PJ here. We've had several friends, who continue to surround us with their love, ask to post the following on Dina's blog, so here it goes:
Let’s Make a Difference!
Dina Mountcastle has been battling breast cancer for over 3 ½ years now. Dina is a wife and mother to two small girls (Madeline and Ginger), an active member of the Prescott community, local theater, MOPs (Mothers of Preschoolers), and American Lutheran Church.
Recently, due to the advanced disease in her liver, the oncology community has recommended ceasing cancer treatment. Hospice services have begun. It goes without saying; this has been devastating news for her, her sweet family, loved ones, and everyone that she has touched.
How can we help? Being in cancer treatment for over 3 ½ years can take a toll on a family’s savings. The medical bills have been significant and burdensome. As you can imagine, Christmas gifts are low on the priority list.
Dina has hesitantly allowed a group of friends to create a way for all of us to make a difference!
If you are able, please consider making a donation to “Dina Mountcastle’s Game On Fund” to make this an extra special Christmas for her family and help with the mounting medical bills. An account has been opened in Dina’s name through PayPal for medical expenses and Christmas for her family. See the “Donate” tab to the right on how to make a donation through PayPal.
As a community, we can make a difference and help this family.
With sincere thanks,
Friends of Dina -
DINA'S BOOB BLOG - An online journal of my breast cancer experience.
Saturday, December 22, 2012
Tuesday, December 11, 2012
The real McKoy
So, let's set the record straight on what 'hospice' looks like. I'll admit, I used to think was all tubes coming out of everywhere, gasping for air and a lot of dramatic reaching across the room at nothing. It is not. What it is - a nurse that manages my meds, comes in 3 times a week to take my vitals (blood pressure, temp, heart, O2 level), we chat about my pooping, or not pooping, and that is really about it. So I hope that paints a little more accurate picture. It also offers lots of other resources which are really helpful - from pastoral care to house cleaning to bathing assistance to assistance of any kind. I found it quite different from my stereo-typical perception. Shame on me. There, enough of that.
One thing I probably should do here, but am extremely reluctant to do is post a current picture of myself. To be honest, I'm embarrassed. I look nothing like I used to look at all. I could take the baldness, that was easy in retrospect to where I am now. I am jaundice because of my high bilirubin levels, I'm extremely thin and old looking on the top of my body, if that makes any sense, but then fat and filled with fluid on the bottom of my body. To make all the more special, my belly is protruding so badly it makes me look like I'm at least 8 months pregnant. I am relying on the walker now because of this balance issue, the cracked pelvis from Annie (which I don't regret at all!), and just general pain. It just plain sucks. I know I've been very forthcoming about this is the past but right now, I just can't be.
The pain level in my liver is slowly increasing therefore my pain meds need to be increased. That makes my bowels move at a snail's pace, causing horrific pain as well as I try to balance laxatives, stool softeners, pineapple, anything to get things moving. Sorry for being so graphic. No, I'm not; this is the real picture of what dying for me looks like, I guess.
Everything that everyone is saying about me is making me feel like I have one foot in the grave, which I guess I do. However, I see it as my port was receiving man made medicine for the last 3 1/2 years and now it will receive what God chooses to give me. At first, I didn't know how to pray. Did I pray for a miracle? Did I pray for complete healing? What I pray for now, after much thought was something that a good friend shared with me. I pray for peace and healing, either this side of heaven or the other. And, as Pastor Mary graciously gave me in her wisdom, whenever I am afraid, I stop whatever fearful thought I am thinking and I say out loud "Jesus, I trust you", because I do. I trust Him so much. To be honest, fear does not come upon me often at all. I feel like me. Sleepy, but me.
I have never used this blog to address anyone, so this post is very difficult for me because I'm not speaking to anyone specific at all. I just want everyone know collectively that I'm not dead yet and only the Lord knows when that will be. I have to say that I feel very much like the Monty Python skit "Bring out your dead", and I'm the guy slung over the shoulder shouting "I'm not quite dead yet...". On the other hand, as much as that makes me laugh, watching "It's a Wonderful Life" will mean something much more to me this year, because it is.
God Bless,
Dina
One thing I probably should do here, but am extremely reluctant to do is post a current picture of myself. To be honest, I'm embarrassed. I look nothing like I used to look at all. I could take the baldness, that was easy in retrospect to where I am now. I am jaundice because of my high bilirubin levels, I'm extremely thin and old looking on the top of my body, if that makes any sense, but then fat and filled with fluid on the bottom of my body. To make all the more special, my belly is protruding so badly it makes me look like I'm at least 8 months pregnant. I am relying on the walker now because of this balance issue, the cracked pelvis from Annie (which I don't regret at all!), and just general pain. It just plain sucks. I know I've been very forthcoming about this is the past but right now, I just can't be.
The pain level in my liver is slowly increasing therefore my pain meds need to be increased. That makes my bowels move at a snail's pace, causing horrific pain as well as I try to balance laxatives, stool softeners, pineapple, anything to get things moving. Sorry for being so graphic. No, I'm not; this is the real picture of what dying for me looks like, I guess.
Everything that everyone is saying about me is making me feel like I have one foot in the grave, which I guess I do. However, I see it as my port was receiving man made medicine for the last 3 1/2 years and now it will receive what God chooses to give me. At first, I didn't know how to pray. Did I pray for a miracle? Did I pray for complete healing? What I pray for now, after much thought was something that a good friend shared with me. I pray for peace and healing, either this side of heaven or the other. And, as Pastor Mary graciously gave me in her wisdom, whenever I am afraid, I stop whatever fearful thought I am thinking and I say out loud "Jesus, I trust you", because I do. I trust Him so much. To be honest, fear does not come upon me often at all. I feel like me. Sleepy, but me.
I have never used this blog to address anyone, so this post is very difficult for me because I'm not speaking to anyone specific at all. I just want everyone know collectively that I'm not dead yet and only the Lord knows when that will be. I have to say that I feel very much like the Monty Python skit "Bring out your dead", and I'm the guy slung over the shoulder shouting "I'm not quite dead yet...". On the other hand, as much as that makes me laugh, watching "It's a Wonderful Life" will mean something much more to me this year, because it is.
God Bless,
Dina
Monday, December 3, 2012
the news we didn't want....................
Well, PJ and I rec'd the news we didn't want on Friday - and I'm going to be very blunt here, if you don't mind. My liver is shutting down and there's nothing they can do about it. Seems my billirubin jumped a whole point last Thurs then again on Fri - and they (meaning the medical director of CTCA and the intake dr. for inpatient) said any further treatment will cause my liver to shut down completely immediately. My liver has been beat up so much, it is currently working at 600% capacity more than it should be. Not good.
At first I cried, then stopped, then cried again. That seems to be the pattern. I cry, then stop, then cry, then stop.
So I've been sent home to live out the remainder of my life, wth a Hospice team. I can't fucking believe it. Party of me thinks - I go through this crappy shit, all this chemo, theresphere, quadrasphere - and this is what I get? None of it worked, the cancer kept growing, and here i am.
Then, on the other hand, I'm so tired. So tired of fighting, I just want to live out these following days, weeks, months - whatever (I'm pretty yellow so that's why I stop at months) here with my family and friends. However, the sucky part (not that it all doesn't suck) is that I still have the broken pelvis, the edema, the neuropathy that is affecting my living. Like I don't get to enjoy the remaining time without this excruciating pain - everywhere - and that sucks.
I feel like I'm in some sort of movie. Like it's happening all around me, but not to me directly. If that makes sense. We elected to tell our family first. Told my mom, and she cried a little, taking it all in.
Told my sweet angels, which was the singlemost heartbreaking thing I've ever had to do I think. I watched their faces and they just dropped. Madeline started crying a little, then said 'Mom I wish we had three lives, then we could live one, die then come back and live again'. Ginger looked at me with no expression and said 'It's my fault'. I held her close and said "no, no my sweet angel, it's not your fault - it's not anyone's fault". Told my sister, who was quiet and stoic. She asked if I wanted her to come out earlier than Jan, I said I didn't know. I don't know how to answer this question. It's like by me answering I'm saying "yea, I think may die then". Then my daddy and his beautiful wife Nancy. Also heart wrenching. To hold my father in my arms on the couch and both of us sob together. This is surreal. Now here. Christmas is usually my ultimate obsession, however now, not so much. I'm so crushed that I wasn't able to experience NYC with my family, it was one of my lifelong dreams to show my kids the Thanksgiving
Day parade, which we didn't do because of my mothers health decline. Little did we know. I suppose it just wasn't supposed to happen. I need to trust that.
My body is just unrecognizable to me. My belly is distended, my skin color is yellowing, I hardly have the strength to get around so the walker is my best friend these days. So I avoid mirrors these days. And of course I would have JUST placed like the biggest MAC order of my life. Any one interested in some fabUlous MAC makeup barely used? Grrr.
I'm not afraid to die. I can't wait to meet Jesus with open arms. But I wish it wasn't now. I want so bad to be a wife to my husband and grow old together. I have sooooo much to teach my girls, about being girls, and women, and wives. Why is this being taken away from me? We purchased a video camera from Walmart so I can start working on recording messages to them. To be honest, I don' know where to start. My friend Jennifer had a great idea of sending them birthday cards, which I will start on this week. It is all so overwhelming.
I've been sitting here at the kitchen table now for a couple of hours typing and my feet are filling with fluid, and it's me and the girls home here alone this morning, so I'll need to sign off here. But not to worry, I'll be back. This blog will again become what I need to get through this.
God Bless -
Dina
Thursday, November 29, 2012
Thank you sir, may I have another...(ultra-painful ultrasound)
Hi there. PJ, Dina's husband here. Wanted to provide an update from our most recent adventure:
Saturday – Liver pain starts and increases in intensity.
Sunday – Unsettled feeling throughout the day.
Monday – Terrible pain in the abdomen, especially on the right side. Took her to CTCA’s Internal Medicine clinic where they started working her up. She was admitted to the inpatient wing to begin addressing the pain and the swelling of the legs and abdomen. A CT scan was performed where the Dr saw a large amount of fluid had accumulated on the right side. The last CT was performed on 10/28, which did not show this fluid. Dr then drained 2800cc of fluid from this area. Pain management was discussed, as well as the fluid accumulation in the belly. Blood work performed which yielded high levels of bilirubin (http://en.wikipedia.org/wiki/Bilirubin).
Tuesday – Ultrasound of the liver was performed and pain management procedures put in place. Episodes of intense pain experienced throughout the day. Ultrasound reviewed looking for blockages of the common bile duct (http://en.wikipedia.org/wiki/Common_bile_duct) and portal vein (http://en.wikipedia.org/wiki/Hepatic_portal_vein). None were visible. Blood work performed which yielded a lower level of bilirubin.
Wednesday – Second ultrasound performed looking for fluid accumulation on the right side. Fluid found to have started collecting again. Efforts continued to manage pain. New diuretic prescribed. Blood work performed which yielded a yet lower level of bilirubin.
Thursday – Further pain management efforts. Blood work performed which yielded bilirubin levels had returned to the same amount as Monday. GI Dr firmly convinced the distended belly is caused by constipation.
That's about it. Will update with more later. Many thanks in advance for your thoughts and prayers
Saturday – Liver pain starts and increases in intensity.
Sunday – Unsettled feeling throughout the day.
Monday – Terrible pain in the abdomen, especially on the right side. Took her to CTCA’s Internal Medicine clinic where they started working her up. She was admitted to the inpatient wing to begin addressing the pain and the swelling of the legs and abdomen. A CT scan was performed where the Dr saw a large amount of fluid had accumulated on the right side. The last CT was performed on 10/28, which did not show this fluid. Dr then drained 2800cc of fluid from this area. Pain management was discussed, as well as the fluid accumulation in the belly. Blood work performed which yielded high levels of bilirubin (http://en.wikipedia.org/wiki/Bilirubin).
Tuesday – Ultrasound of the liver was performed and pain management procedures put in place. Episodes of intense pain experienced throughout the day. Ultrasound reviewed looking for blockages of the common bile duct (http://en.wikipedia.org/wiki/Common_bile_duct) and portal vein (http://en.wikipedia.org/wiki/Hepatic_portal_vein). None were visible. Blood work performed which yielded a lower level of bilirubin.
Wednesday – Second ultrasound performed looking for fluid accumulation on the right side. Fluid found to have started collecting again. Efforts continued to manage pain. New diuretic prescribed. Blood work performed which yielded a yet lower level of bilirubin.
Thursday – Further pain management efforts. Blood work performed which yielded bilirubin levels had returned to the same amount as Monday. GI Dr firmly convinced the distended belly is caused by constipation.
That's about it. Will update with more later. Many thanks in advance for your thoughts and prayers
Saturday, August 25, 2012
How Time Flies
Well, a lot has happened since late June. I really need to be more diligent here, otherwise it's like when a cancer patient drops someone from their Christmas card list - everyone starts wondering: "Oh! - did she?" No - I'm very much still alive and kicking. Let's catch up a bit shall we?
Our summer was wicked busy - which was great. The kids took swimming lessons then they each went to a week long day camp at the Nature Center up here in Prescott, and that was GREAT for each of them. It was hot - but they also got to experience some monsoons first hand in the forest, pretty cool. Point is, I kept my kids busy busy busy. Then school started for Madeline first part of Aug. She is a big 2nd grader now, I can't believe it, and just absolutely luvin it. Granted they aren't sending home any homework till after Parent Night next week, so her tune may change a bit, but for now, she is happy as a clam. Ginger will start 5 day pre-K at our church preschool after labor day weekend. She is pretty excited too - but I think right now, she's just happy to spend one on one time w/ Mom and by herself.
My treatment has been going along status quo. I am still on the 1/2 dose which is much more tolerable than the full dose, and my hairt did start growing back, thin but coming back, and I couldn't really tell if it was chemo hair or real hair of a mixture thereof. So what do I decide to do to it? Let's bleach it! Yeah! I've always wanted platinum blonde and this is just the PERFECT time to do THAT, right? My awesome hairdresser did it - and did a fantastic job. However, (you knew this was coming right?), now - it's falling out again. My girls had put some semi-permanent pink color in, and to get it out, Grace had to bleach it twice - which I think was just too much for my head to take. Thus, we are once again molting. Also, I discovered that walking around town with my much needed freedom from scarves, I realized how much of a lesbian I looked like. Jeans, light fashionable ladies flannel print button down, croc flip flops, and my spiked white hair. I looked like a lesbian. Not that there's anything WRONG with that, I mean, all I was missing was the Birkenstock (which are on sale now, hmmmmm). Not quite the look I was going for. But I got some cool comments too, Ginger called me a Rock Star, friends called me Anne Lennox, and the nice lady at the reception counter at the pediatricians office called me a grandma. Needless to say, I've rethought this decision on more than one occasion. Perhaps my hair falling out again now isn't necessarily a bad thing. What I have realized though - is that I really miss my hair. A lot. I miss having hair. I'm thinking of becoming a wig person. I always have thought - everyone in this town already knows I have cancer and am bald, who am I trying to fool here? Plus, don't I have to play the 'I'm bald and proud of it and will wear it like a warrior!' This is for me - not for anyone else, and I want to feel pretty. If a wig can help do that, why not? People around here will get used to it - it won't take that long, this is about me feeling good about me - so I'm in contact with my insurance company to see how much they will cover for a 'cranial prosthetic' - good right? That's what I must call it to see where it falls in the land of coverage terms within my policy. We will see.
Something new I have been experiencing as been my tummy protruding. The previous time I went into the doc (just went again yesterday for treatment) I mentioned this, saying it didn't hurt or anything, I was experiencing some constipation issues, but was walking around like frickin E.T. and did not feel real attractive about it. Can we keep adding more unattractiveness to Dina? Please? Anyhoo, everyone thinks is gas and constipation, so I am prescribed this mother of a 'not a laxative but really felt like one' and told to take Miralax with it 2x a day and after 3 days - whala! We have movement!!! So that worked but I still felt super bloated. So I've added a probiotic, Miralax once a day, and Gas X at night, and I think we're on the road to recovery. Still protrusion, not as severe, but I will request a visit from the gastro doc when I return next week for treatment if it's not significantly better.
I finally did visit with a psychiatrist, and have to say it was the best thing I ever did. Spoke to him about my whole life, the good, the bad, the ugly and the uglier - and he seemed to find this extremely refreshing. I said that I had been through therapy before and had come to term with many areas of my like, so those were a bit earlier to talk about. The one thing I couldn't seem to master, which is why I was there, was this dark place my thoughts would go - and this started way before cancer. I'd have this little reel of conversation that would play in my head if I wasn't being productive enough, successful enough, a good enough mother, a good enough friend, a good enough wife, a good enough servant of Jesus, then cancer came and that list just tripled in length. I could shut it off - though I tried throughout the years of my life with alcohol, with prayer - which helped immensely more than ANYTHING else, my relationship with Christ got me closer to healing this voice inside me than anything else, but it still would creep back. Now, I greatly summarizing my visit with my psych doc here, but in the end, he felt that as a young child, I was always taught to fear, and to strive to be better, thus never developing the relaxing receptors in my brain needed to function in this life - general anxiety disorder. He explained this and I just burst into tears. It was like finally, a light went off and there was an explanation for how I was feeling, that it wasn't just me as this complete f*ck up - ya know? It just made total sense to me. So slowly we medicated me onto a drug called Neurontin and it is really helping, on so many levels. Pretty happy about that.
We are well into rehearsals for Annie and I must say, I am having a BLAST!!!! I am tired, tired, tired - this was MUCH easier when I was single and in my early 30's - much less married with 2 kids, tending to my niece, mom, and in full chemo for breast cancer - but whatever. I am loving this show, loving this cast and crew, and loving this part - Miss Hannigan is so much fun I can hardly stand it! What a gift. What a beautiful gift God has given me by laying this opportunity before me and giving me the support network to get out there and do it. I hope I make my family, and this production staff proud. We open Sept 14th!!! Get your tickets now!!
Now, because our life just wasn't full enough - we have added yet another family member in need and her 13 month old daughter into our home - temporarily. You think I was feeling like the Charlie and the Chocolate Factory before with all of us sleeping in the same bed in the middle of the room? Here we go. My husbands sister and her daughter were literally thrown our of the home they were staying in 2 weeks ago - with no place to go. So PJ and I spoke, laid down some ground rules amongst each other first with this decision, then went and got her and her daughter in Phx and brought them up here. They are staying on our couch, we have the baby in what we call the 'boat bed' this inflatable toddler mattress we used when we would travels with ours, and we are helping her get back up on her feet. She has never really been shown how to mother, how to have her own place, take care of herself and be independent, so we are going to take this opportunity to help her in this aspect, and she has made herself open to this, which has been refreshing to say the least. We have made great progress thus far, have a ways to go - but we'll get it done. Whenever I find my self in a selfish thinking mode, which is completely normal and human I think, and I'm talking about thoughts like 'I want my couch back, I want my evenings back, I want my much needed room back, I want my food back' I am reminded of His simple words - Love Thy Neighbor. And I need to help her and this innocent child. It is what we are called to do. Not be taken advantage of, do not mistake. We won't do it for her, we just don't have time, but we can love her, and sternly point her in the right direction then follow up and point her in the next direction and follow up. I love her and this baby so much, and know that with a little help, she can build a life for her and her child, one that she can be proud of, that is all I want. There's a time frame, I can't have someone living on my couch for months, it just isn't healthy for anyone - but I know we'll do it. Together, with God's help.
Just had treatment yesterday, and still on the steroid high, which is why I'm typing this morning. Still quiet although my kids are both fighting colds now. My hubby has gone down to Phx to visit his dad who has gotten much worse unfortunately. We've been told he had a violent outburst last week and had to be sent to a psych ward for evaluation to see if he will even be allowed to return to the facility he was in. I must say, when word of this came I looked up and said to the Lord - "seriously? no more please, just let us get a handle on what we've recently taken on before we take on more". But it's His time, not ours right? Damn. I will scan again after the play is open and done with. I'll have one more treatment next week then I will return to treatment on the 28th of Sept. That may seem like a long time, but, my platelets have continually been in a lower range come the week I am to start treatment - not dangerous, but if I were given chemo, it would drop into a scary range. So I've had to wait 2 weeks between treatments. No biggie. We will scan then and start cycle 5. Praying for good results overall. I'd be lying if I said I hadn't been hurting. My core is hurting - all the time - some liver pain, but it comes and goes, lower back ache, rib pain - is is muscle? Is it bone? It's been hard to differentiate between rehearsal pains and cancer pains. I mean, dancing? Me? I haven't done this shit in like, 10 years. So I just keep praying, and praying, and praying - and looking for the opportunity to love, not bitch and complain. Wow that's hard.
God Bless -
Dina
Our summer was wicked busy - which was great. The kids took swimming lessons then they each went to a week long day camp at the Nature Center up here in Prescott, and that was GREAT for each of them. It was hot - but they also got to experience some monsoons first hand in the forest, pretty cool. Point is, I kept my kids busy busy busy. Then school started for Madeline first part of Aug. She is a big 2nd grader now, I can't believe it, and just absolutely luvin it. Granted they aren't sending home any homework till after Parent Night next week, so her tune may change a bit, but for now, she is happy as a clam. Ginger will start 5 day pre-K at our church preschool after labor day weekend. She is pretty excited too - but I think right now, she's just happy to spend one on one time w/ Mom and by herself.
My treatment has been going along status quo. I am still on the 1/2 dose which is much more tolerable than the full dose, and my hairt did start growing back, thin but coming back, and I couldn't really tell if it was chemo hair or real hair of a mixture thereof. So what do I decide to do to it? Let's bleach it! Yeah! I've always wanted platinum blonde and this is just the PERFECT time to do THAT, right? My awesome hairdresser did it - and did a fantastic job. However, (you knew this was coming right?), now - it's falling out again. My girls had put some semi-permanent pink color in, and to get it out, Grace had to bleach it twice - which I think was just too much for my head to take. Thus, we are once again molting. Also, I discovered that walking around town with my much needed freedom from scarves, I realized how much of a lesbian I looked like. Jeans, light fashionable ladies flannel print button down, croc flip flops, and my spiked white hair. I looked like a lesbian. Not that there's anything WRONG with that, I mean, all I was missing was the Birkenstock (which are on sale now, hmmmmm). Not quite the look I was going for. But I got some cool comments too, Ginger called me a Rock Star, friends called me Anne Lennox, and the nice lady at the reception counter at the pediatricians office called me a grandma. Needless to say, I've rethought this decision on more than one occasion. Perhaps my hair falling out again now isn't necessarily a bad thing. What I have realized though - is that I really miss my hair. A lot. I miss having hair. I'm thinking of becoming a wig person. I always have thought - everyone in this town already knows I have cancer and am bald, who am I trying to fool here? Plus, don't I have to play the 'I'm bald and proud of it and will wear it like a warrior!' This is for me - not for anyone else, and I want to feel pretty. If a wig can help do that, why not? People around here will get used to it - it won't take that long, this is about me feeling good about me - so I'm in contact with my insurance company to see how much they will cover for a 'cranial prosthetic' - good right? That's what I must call it to see where it falls in the land of coverage terms within my policy. We will see.
Something new I have been experiencing as been my tummy protruding. The previous time I went into the doc (just went again yesterday for treatment) I mentioned this, saying it didn't hurt or anything, I was experiencing some constipation issues, but was walking around like frickin E.T. and did not feel real attractive about it. Can we keep adding more unattractiveness to Dina? Please? Anyhoo, everyone thinks is gas and constipation, so I am prescribed this mother of a 'not a laxative but really felt like one' and told to take Miralax with it 2x a day and after 3 days - whala! We have movement!!! So that worked but I still felt super bloated. So I've added a probiotic, Miralax once a day, and Gas X at night, and I think we're on the road to recovery. Still protrusion, not as severe, but I will request a visit from the gastro doc when I return next week for treatment if it's not significantly better.
I finally did visit with a psychiatrist, and have to say it was the best thing I ever did. Spoke to him about my whole life, the good, the bad, the ugly and the uglier - and he seemed to find this extremely refreshing. I said that I had been through therapy before and had come to term with many areas of my like, so those were a bit earlier to talk about. The one thing I couldn't seem to master, which is why I was there, was this dark place my thoughts would go - and this started way before cancer. I'd have this little reel of conversation that would play in my head if I wasn't being productive enough, successful enough, a good enough mother, a good enough friend, a good enough wife, a good enough servant of Jesus, then cancer came and that list just tripled in length. I could shut it off - though I tried throughout the years of my life with alcohol, with prayer - which helped immensely more than ANYTHING else, my relationship with Christ got me closer to healing this voice inside me than anything else, but it still would creep back. Now, I greatly summarizing my visit with my psych doc here, but in the end, he felt that as a young child, I was always taught to fear, and to strive to be better, thus never developing the relaxing receptors in my brain needed to function in this life - general anxiety disorder. He explained this and I just burst into tears. It was like finally, a light went off and there was an explanation for how I was feeling, that it wasn't just me as this complete f*ck up - ya know? It just made total sense to me. So slowly we medicated me onto a drug called Neurontin and it is really helping, on so many levels. Pretty happy about that.
We are well into rehearsals for Annie and I must say, I am having a BLAST!!!! I am tired, tired, tired - this was MUCH easier when I was single and in my early 30's - much less married with 2 kids, tending to my niece, mom, and in full chemo for breast cancer - but whatever. I am loving this show, loving this cast and crew, and loving this part - Miss Hannigan is so much fun I can hardly stand it! What a gift. What a beautiful gift God has given me by laying this opportunity before me and giving me the support network to get out there and do it. I hope I make my family, and this production staff proud. We open Sept 14th!!! Get your tickets now!!
Now, because our life just wasn't full enough - we have added yet another family member in need and her 13 month old daughter into our home - temporarily. You think I was feeling like the Charlie and the Chocolate Factory before with all of us sleeping in the same bed in the middle of the room? Here we go. My husbands sister and her daughter were literally thrown our of the home they were staying in 2 weeks ago - with no place to go. So PJ and I spoke, laid down some ground rules amongst each other first with this decision, then went and got her and her daughter in Phx and brought them up here. They are staying on our couch, we have the baby in what we call the 'boat bed' this inflatable toddler mattress we used when we would travels with ours, and we are helping her get back up on her feet. She has never really been shown how to mother, how to have her own place, take care of herself and be independent, so we are going to take this opportunity to help her in this aspect, and she has made herself open to this, which has been refreshing to say the least. We have made great progress thus far, have a ways to go - but we'll get it done. Whenever I find my self in a selfish thinking mode, which is completely normal and human I think, and I'm talking about thoughts like 'I want my couch back, I want my evenings back, I want my much needed room back, I want my food back' I am reminded of His simple words - Love Thy Neighbor. And I need to help her and this innocent child. It is what we are called to do. Not be taken advantage of, do not mistake. We won't do it for her, we just don't have time, but we can love her, and sternly point her in the right direction then follow up and point her in the next direction and follow up. I love her and this baby so much, and know that with a little help, she can build a life for her and her child, one that she can be proud of, that is all I want. There's a time frame, I can't have someone living on my couch for months, it just isn't healthy for anyone - but I know we'll do it. Together, with God's help.
Just had treatment yesterday, and still on the steroid high, which is why I'm typing this morning. Still quiet although my kids are both fighting colds now. My hubby has gone down to Phx to visit his dad who has gotten much worse unfortunately. We've been told he had a violent outburst last week and had to be sent to a psych ward for evaluation to see if he will even be allowed to return to the facility he was in. I must say, when word of this came I looked up and said to the Lord - "seriously? no more please, just let us get a handle on what we've recently taken on before we take on more". But it's His time, not ours right? Damn. I will scan again after the play is open and done with. I'll have one more treatment next week then I will return to treatment on the 28th of Sept. That may seem like a long time, but, my platelets have continually been in a lower range come the week I am to start treatment - not dangerous, but if I were given chemo, it would drop into a scary range. So I've had to wait 2 weeks between treatments. No biggie. We will scan then and start cycle 5. Praying for good results overall. I'd be lying if I said I hadn't been hurting. My core is hurting - all the time - some liver pain, but it comes and goes, lower back ache, rib pain - is is muscle? Is it bone? It's been hard to differentiate between rehearsal pains and cancer pains. I mean, dancing? Me? I haven't done this shit in like, 10 years. So I just keep praying, and praying, and praying - and looking for the opportunity to love, not bitch and complain. Wow that's hard.
God Bless -
Dina
Monday, June 25, 2012
Looking the Part
Well, a lot has happened since my last post. My neurpathy did get bad - super bad - we took a break to let it wear off a bit, which it did, and I had planned our Disney trip during the time off I was going to have from chemo. Little did I know that I started to not feel well. Wasn't feeling well around the third week off. I mean, usually you give yourself a break and you start gaining your strength back, getting your energy back - me? No such luck. I was experiencing extreme fatigue and liver pain. So I called and they got me in straight away and we started treatment back up on June 1st. The good thing is my doc has decided to only give me 1/2 the dose of what I was receiving before. Trying to avoid the neuropathy issue again. I'm tolerating this dose much better. I've regained about 70% of the feeling back in my hands and feet - no longer having a problem with my arms, but my legs remain in a semi-numbed state. Strength wise though, I'm in a much better position . I do feel though that I'm nowhere as strong or as coordinated as I used to be, which is just, well, frustrating and scary at the same time. Not sure if that is the chemo (probably is) or the cancer. Sucks. But - to stay on the positive side, I am way better than I was - thank you Jesus. My eyelashes and eyebrows have all fallen out - so I officially look like Powder now, except with decent tits. Which no one is really looking at anyway because of the non-featuresque look of my face. My hand is much steadier now applying eyeliner and eyebrows - something I haven't done real well since, well, the last time I lost my eyelashes and eyebrows. Ugh. So I'm looking into permanent make-up - an entirely different world all together I'm finding. I don't want to look like Groucho Marks, and the pictures and people I have seen that have had eyebrows and eyeliner done, seem to resemble some sort of circus character. I had a consultation with a woman here locally who does it, and she seemed ok I guess. There were all these typos in her brochure though - and that concerned me. Should it? Does it make her less able to tattoo on a decent eyebrow if her brochure indicates her office is located in Prescott, AR rather than AZ? Not sure. Again, I'm venturing into uncharter waters here - we'll see what I decide.
I've got this weird chemo fuzz mixed with darker hair coming in on my head - I'm waititing to see what that turns into; and I do have eyelashes starting to grow in - they are white/blonde, but hairs nonetheless. I am torn whether to be excited about this - hair falling out means the chemo is doing what it is supposed to be doing (a myth really but it does bring a comforting false sense of hope) yet happpy about any chance to look and feel somewhat normal again. I think this sucks more the second time around - it makes me want to blend in even more the second time. Although I'm much less self conscience at the same time, which is such as oxymoron, right? I want to have hair and look normal even more than before, but could care less when I walk into a public place with my scarf on. Interesting.
I'm losing weight, which usually is great for me - but I think what I'm losing is muscle mass - because I totally have chalk board arms now - something I've never had! Ever! Going to try to work in some daily, gentle arm workouts each day. I need to do something.
So - back to my chemo getting underway sooner rather than later - get this - I had my second treatment in the cycle on Thurs the 7th, then had to drive down the next day for my Nulasta shot, came back that day and drove right to the Relay for Life where we stayed from 4:30 pm till 8:30 am the next day, came home and slept for 5 hours, left the next day to drive to Disneyland, arrived Sun evening, spend 12 hours at Disney on Monday - 11 hours at CA Adventure Park on Tues, Laguna Beach on Wed, drove back to AZ on Thurs, drove to Lolomai Springs the next day for Fathers Day weekend, back on Sunday, then drove Brittany to camp on Monday in Williams. I cannot even tell you what a great time we all had everywhere - especially Disneyland. First of all, it hasn't been just the 4 of us in quite awhile, and this gave us such a wonderful opportunity to bond as a family. I feel like I know my kids so much better now - what a gift. I did just fine too. We just made sure we took our time, didn't have a schedule and let the day unfold as it would before us. It was awesome. What a blessing this trip was for my family. I will be ever greatful to MOPS for sending me and my family on this trip. We created memories to last a lifetime, We never would have been able to afford this vacation otherwise - thank you, from the bottom of my heart.
So I was supposed to have treatment this past Fri but my platelets were not in a range that was safe - so no soup for me. His time - I know this - but frustrating nonetheles. Now I'm dealing with this leg pain that I thought was from wearing tennies, and walking so much, but it is still hanging around. Any kind of chronic pain scares me. I'll have my blood drawn again tomorrow and see where we are.
Speaking of scared, my mind just goes anywhere and everywhere these days. To a dark place, then I remember a scripture, so I say it out loud, then I'm fine. I just feel like I've lost my sense of humor, and my patience. I have to force myself to be more Christlike lately - which is something that came quite natural the first time around, not so much this time. I'm just too frickin serious lately!!!! I gotta lighten up!! Lord help me lighten up!!!
OH - I got the part. Can you believe it? I'm Miss Hannigan in the Prescott Center for the Arts production of Annie. I am sooooo excited I can't stand it. We open Sept 14th.
Well, I am falling asleep here, so its off to bed for me for now. Girls have swimming lessons in the am, then it's off to Williams to pick up Brittany. Just keep swimming, just keep swimming,
God Bless -
Dina
I've got this weird chemo fuzz mixed with darker hair coming in on my head - I'm waititing to see what that turns into; and I do have eyelashes starting to grow in - they are white/blonde, but hairs nonetheless. I am torn whether to be excited about this - hair falling out means the chemo is doing what it is supposed to be doing (a myth really but it does bring a comforting false sense of hope) yet happpy about any chance to look and feel somewhat normal again. I think this sucks more the second time around - it makes me want to blend in even more the second time. Although I'm much less self conscience at the same time, which is such as oxymoron, right? I want to have hair and look normal even more than before, but could care less when I walk into a public place with my scarf on. Interesting.
I'm losing weight, which usually is great for me - but I think what I'm losing is muscle mass - because I totally have chalk board arms now - something I've never had! Ever! Going to try to work in some daily, gentle arm workouts each day. I need to do something.
So - back to my chemo getting underway sooner rather than later - get this - I had my second treatment in the cycle on Thurs the 7th, then had to drive down the next day for my Nulasta shot, came back that day and drove right to the Relay for Life where we stayed from 4:30 pm till 8:30 am the next day, came home and slept for 5 hours, left the next day to drive to Disneyland, arrived Sun evening, spend 12 hours at Disney on Monday - 11 hours at CA Adventure Park on Tues, Laguna Beach on Wed, drove back to AZ on Thurs, drove to Lolomai Springs the next day for Fathers Day weekend, back on Sunday, then drove Brittany to camp on Monday in Williams. I cannot even tell you what a great time we all had everywhere - especially Disneyland. First of all, it hasn't been just the 4 of us in quite awhile, and this gave us such a wonderful opportunity to bond as a family. I feel like I know my kids so much better now - what a gift. I did just fine too. We just made sure we took our time, didn't have a schedule and let the day unfold as it would before us. It was awesome. What a blessing this trip was for my family. I will be ever greatful to MOPS for sending me and my family on this trip. We created memories to last a lifetime, We never would have been able to afford this vacation otherwise - thank you, from the bottom of my heart.
So I was supposed to have treatment this past Fri but my platelets were not in a range that was safe - so no soup for me. His time - I know this - but frustrating nonetheles. Now I'm dealing with this leg pain that I thought was from wearing tennies, and walking so much, but it is still hanging around. Any kind of chronic pain scares me. I'll have my blood drawn again tomorrow and see where we are.
Speaking of scared, my mind just goes anywhere and everywhere these days. To a dark place, then I remember a scripture, so I say it out loud, then I'm fine. I just feel like I've lost my sense of humor, and my patience. I have to force myself to be more Christlike lately - which is something that came quite natural the first time around, not so much this time. I'm just too frickin serious lately!!!! I gotta lighten up!! Lord help me lighten up!!!
OH - I got the part. Can you believe it? I'm Miss Hannigan in the Prescott Center for the Arts production of Annie. I am sooooo excited I can't stand it. We open Sept 14th.
Well, I am falling asleep here, so its off to bed for me for now. Girls have swimming lessons in the am, then it's off to Williams to pick up Brittany. Just keep swimming, just keep swimming,
God Bless -
Dina
Saturday, May 26, 2012
Long Time No Feel!!!!!
I can't believe how long since my last post - and trust me, it's not because I didn't want or need to - cuz I have really needed to as of late - it's just after my last treatment my neuropathy got even worse, and I literally can't feel the keys I'm typing right now on the laptop. PJ sweetly offered to type while I dictated, but that just wouldn't feel right. To be honest I don't really know what I'm going to say until I start typing. So the house is completely quiet right now, which never happens, so I'm taking advantage as this is taking FOREVER - I must watch everything I am typing and be very intentional. This neuropathy stuff is the most bizarre thing I get to add to my 'side effects' list. Before I start bitching, let me bring you up to date:
So I went back on the 18th of this month for the PET scan and we had really great results. Everything is shrinking!!! Bone mets and liver mets!! I totally had the line from Seinfeld enter my mind when they said shrinkage "I WAS IN THE POOL!!!" Anyway, so after 3 years of trial and error, we finally found the drug that is killing this shit. My neuropathy however has gotten worse. The only way I can describe it, is the way I explained it to PJ when we went out to lunch waiting for my scan results. I said 'If I had to quickly run for whatever reason, I would fall. I feel that unsteady on my feet.' I can't take my pills each morning without dropping them because I can't feel them in my fingers, I can't draw Ginger's meds without almost spilling it all over the counter, I can't button small buttons. It is awful. My doc performed a reflex test on my legs, where they hit that part of your knee with the little mallot thingy? No reaction. Not good. So the plan right now is to take a couple weeks off, let the neuropathy heal a bit, then go back to chemo at a lesser dose. I can't tell you how thrilled I am for this break - a good couple of weeks to just heal and get stronger. I'm still doing the rebuilder system, gloves and socks, and to be honest, not sure if its working at all. But I'll continue like they have instructed. I just want to exercise, and my energy lately has just been in the shitter. (in reviewing my blog, the the brown word seems to be at the forefront of my mind today, just warning)
I did finally get to perform just 10 minutes of my one woman show I wrote, which was quite liberating I must say. It is a show I wrote just before I met PJ and then I never did anything with it. So I pulled it out, dusted it off, updated it a bit, and put it on its feet. It awakened things in me I had no idea were still there. I know it sounds corny, but when I'm on stage, I don't feel any of my side effects. I don't feel sick. Maybe it's adrenaline, I don't know - but I love it. So then that led me to do something else quite crazy looking at it now. Considering I'm in the middle of chemo treatment, I did something I am quite proud of. I auditioned for a musical being put on here in my community by a local theatre. I haven't been on stage in, I figured, 10 years, much less auditioned for a show which takes me to like, 13 years - crazy right? The show is Annie and I auditioned for the part of Mrs. Hannigan. A total dream role for me. Whether I get it or not, I have seen something in myself that even after all this time, I can still do it. And when I left the audition, which I really felt like I nailed, I walked out of the theater and said "Fuck you cancer! You can't take this from me!" Then I promptly fell down some wooden stairs cuz I couldn't feel my feet beneath me. I'm fine, my legs are banged up, but I'm fine. Once again, I got up and said - ok sorry for the f bomb, but I still mean it. I think what I need to do is really figure out what I need to do to do this now. I can still do it, and I bring so much more to it now than I did 10+ years ago. I bring maturity, confidence, calmness, love - and most of all, I give it all to Jesus before I go and do anything. It takes all the pressure off - I almost wish I knew then what I knew now, but then I wouldn't be here. Anyway, it was very empowering on so many levels. I literally decided on Sun to audition on Wed, found the music I needed for the audition in Phx on Monday, drove down to get it and got to have dinner with my fabulous friend Cindi, ran through it about 4 times with my awesome friend Kerry using the church piano, then did it on Wed. This is funny, I'm filling out the audition form and it asks if you are willing to cut or dye your hair. I wrote "HA! Let's say I am 'wig-ready'" I didn't realize how much I loved this piece of me that had been buried for so long, and for good reason, I'm not complaining about this. I needed to focus on husband, children, cancer - but the things that fill you up, I forgot that this was one of them. So cool. We will see if I get cast, but seriously, as cliche as this sounds, this showed me something that I need to continue to tap into, in whichever way God needs me to. The cobwebbed door has been opened once again.
I have handed over the MOPS group to the new Coordinator. It was bittersweet I must admit. I am excited to see where God wants me next, but letting go was harder than I thought. They surprised me though, my last meeting was last Thursday, and this inspirational, lovely group of women really got me. They performed this little skit where I was in an Italian restaurant, and Kerry was hilarious!!!! She played the owner of the restaurant, then proceeded to introduce me to the menu. Turns out the entire MOPS group pitched in and gathered enough money to send me and my family on a trip of my choice this summer. I just couldn't believe it. I mean, we wonder how we are going to put gas in the car, much less even think about taking a trip anywhere - so I can't even tell you what a blessing this is for us. They offered 5 different trips, one of which was a romantic weekend away for just PJ and I, then they offered us Disneyland. Well, as much as I bitch about not spending enough one on one time with my husband, I couldn't pass up the opportunity to see my kids faces light up at the happiest place on earth. So we are going to Disneyland!!!! I am so excited! And we are going here right quickly as I wanted to take advantage of it while I'm on this break from treatment - when PJ's grandmother gifted us Disneyland a couple years back, I was right in the middle of treatment and had a blast, but pretty much spent half the time in bed. I want my strength up a bit more this time - since we will have both girls with us this time, Ginger wasn't old enough before. Since we didn't plan for this, we have like, no spending money, but I'm trying not to worry about that - it will all work out fine, I'm sure of it. What a gift. And what an honor to be part of this awesome organization MOPS. I am humbled by their generosity, and blessed by each of their friendships. Never in my life, have I ever felt connected to a community like I do in this one. I was led here, most definitely. I ask for God's direction in seeing where He needs me next, and I can take the love shown to me by this fabulous organization and bless others.
I'm working hard at keeping my head in the game. Knowing that where the mind goes, the man follows, I gotta make sure my mind is always going in a good direction. That's hard sometimes, most of the time, but I'm practicing it - and practice makes perfect, right? I still get those, let's call them 'shitballs' thrown at me every now and then, that try to knock me off my game. I got greeted by a friend I hadn't seen for awhile at church on Mother's Day with 'God gave you another one!' cue confused look, do they mean another kid? like Brittney? then here comes the explanation 'Another Mothers Day - He gave you another one'. Seriously? I mean, in my mind, I have many many more coming to me - what a stupid thing to say to someone, right? Shitball hitting me right in the face. So I take out my boogie wipes, chuckle a bit, and start to wipe it off. Most times I get it all and continue throughout my day just fine, other times this shitball gets stuck in the creases and crevices of my aging complexion and I find myself continuing finding remnants of it throughout the day, week. But I guess we all have shitballs thrown at us, we just have to always arm ourselves with the proper wipes, chuckle to ourselves, know what Gods Word says that He wants for us, and wipe it off.
God Bless -
Dina
So I went back on the 18th of this month for the PET scan and we had really great results. Everything is shrinking!!! Bone mets and liver mets!! I totally had the line from Seinfeld enter my mind when they said shrinkage "I WAS IN THE POOL!!!" Anyway, so after 3 years of trial and error, we finally found the drug that is killing this shit. My neuropathy however has gotten worse. The only way I can describe it, is the way I explained it to PJ when we went out to lunch waiting for my scan results. I said 'If I had to quickly run for whatever reason, I would fall. I feel that unsteady on my feet.' I can't take my pills each morning without dropping them because I can't feel them in my fingers, I can't draw Ginger's meds without almost spilling it all over the counter, I can't button small buttons. It is awful. My doc performed a reflex test on my legs, where they hit that part of your knee with the little mallot thingy? No reaction. Not good. So the plan right now is to take a couple weeks off, let the neuropathy heal a bit, then go back to chemo at a lesser dose. I can't tell you how thrilled I am for this break - a good couple of weeks to just heal and get stronger. I'm still doing the rebuilder system, gloves and socks, and to be honest, not sure if its working at all. But I'll continue like they have instructed. I just want to exercise, and my energy lately has just been in the shitter. (in reviewing my blog, the the brown word seems to be at the forefront of my mind today, just warning)
I did finally get to perform just 10 minutes of my one woman show I wrote, which was quite liberating I must say. It is a show I wrote just before I met PJ and then I never did anything with it. So I pulled it out, dusted it off, updated it a bit, and put it on its feet. It awakened things in me I had no idea were still there. I know it sounds corny, but when I'm on stage, I don't feel any of my side effects. I don't feel sick. Maybe it's adrenaline, I don't know - but I love it. So then that led me to do something else quite crazy looking at it now. Considering I'm in the middle of chemo treatment, I did something I am quite proud of. I auditioned for a musical being put on here in my community by a local theatre. I haven't been on stage in, I figured, 10 years, much less auditioned for a show which takes me to like, 13 years - crazy right? The show is Annie and I auditioned for the part of Mrs. Hannigan. A total dream role for me. Whether I get it or not, I have seen something in myself that even after all this time, I can still do it. And when I left the audition, which I really felt like I nailed, I walked out of the theater and said "Fuck you cancer! You can't take this from me!" Then I promptly fell down some wooden stairs cuz I couldn't feel my feet beneath me. I'm fine, my legs are banged up, but I'm fine. Once again, I got up and said - ok sorry for the f bomb, but I still mean it. I think what I need to do is really figure out what I need to do to do this now. I can still do it, and I bring so much more to it now than I did 10+ years ago. I bring maturity, confidence, calmness, love - and most of all, I give it all to Jesus before I go and do anything. It takes all the pressure off - I almost wish I knew then what I knew now, but then I wouldn't be here. Anyway, it was very empowering on so many levels. I literally decided on Sun to audition on Wed, found the music I needed for the audition in Phx on Monday, drove down to get it and got to have dinner with my fabulous friend Cindi, ran through it about 4 times with my awesome friend Kerry using the church piano, then did it on Wed. This is funny, I'm filling out the audition form and it asks if you are willing to cut or dye your hair. I wrote "HA! Let's say I am 'wig-ready'" I didn't realize how much I loved this piece of me that had been buried for so long, and for good reason, I'm not complaining about this. I needed to focus on husband, children, cancer - but the things that fill you up, I forgot that this was one of them. So cool. We will see if I get cast, but seriously, as cliche as this sounds, this showed me something that I need to continue to tap into, in whichever way God needs me to. The cobwebbed door has been opened once again.
I have handed over the MOPS group to the new Coordinator. It was bittersweet I must admit. I am excited to see where God wants me next, but letting go was harder than I thought. They surprised me though, my last meeting was last Thursday, and this inspirational, lovely group of women really got me. They performed this little skit where I was in an Italian restaurant, and Kerry was hilarious!!!! She played the owner of the restaurant, then proceeded to introduce me to the menu. Turns out the entire MOPS group pitched in and gathered enough money to send me and my family on a trip of my choice this summer. I just couldn't believe it. I mean, we wonder how we are going to put gas in the car, much less even think about taking a trip anywhere - so I can't even tell you what a blessing this is for us. They offered 5 different trips, one of which was a romantic weekend away for just PJ and I, then they offered us Disneyland. Well, as much as I bitch about not spending enough one on one time with my husband, I couldn't pass up the opportunity to see my kids faces light up at the happiest place on earth. So we are going to Disneyland!!!! I am so excited! And we are going here right quickly as I wanted to take advantage of it while I'm on this break from treatment - when PJ's grandmother gifted us Disneyland a couple years back, I was right in the middle of treatment and had a blast, but pretty much spent half the time in bed. I want my strength up a bit more this time - since we will have both girls with us this time, Ginger wasn't old enough before. Since we didn't plan for this, we have like, no spending money, but I'm trying not to worry about that - it will all work out fine, I'm sure of it. What a gift. And what an honor to be part of this awesome organization MOPS. I am humbled by their generosity, and blessed by each of their friendships. Never in my life, have I ever felt connected to a community like I do in this one. I was led here, most definitely. I ask for God's direction in seeing where He needs me next, and I can take the love shown to me by this fabulous organization and bless others.
I'm working hard at keeping my head in the game. Knowing that where the mind goes, the man follows, I gotta make sure my mind is always going in a good direction. That's hard sometimes, most of the time, but I'm practicing it - and practice makes perfect, right? I still get those, let's call them 'shitballs' thrown at me every now and then, that try to knock me off my game. I got greeted by a friend I hadn't seen for awhile at church on Mother's Day with 'God gave you another one!' cue confused look, do they mean another kid? like Brittney? then here comes the explanation 'Another Mothers Day - He gave you another one'. Seriously? I mean, in my mind, I have many many more coming to me - what a stupid thing to say to someone, right? Shitball hitting me right in the face. So I take out my boogie wipes, chuckle a bit, and start to wipe it off. Most times I get it all and continue throughout my day just fine, other times this shitball gets stuck in the creases and crevices of my aging complexion and I find myself continuing finding remnants of it throughout the day, week. But I guess we all have shitballs thrown at us, we just have to always arm ourselves with the proper wipes, chuckle to ourselves, know what Gods Word says that He wants for us, and wipe it off.
God Bless -
Dina
Thursday, May 3, 2012
The Big Toe Theory
So here I was, going along, dealing with side effects, and things are settling into what I think is my new temporary normal, when I get a phone call while in Walmart looking for birthday presents for Ginger from my husband who starts out the conversation with 'first of all, I'm OK'. My heart sunk. Here I was, slightly irritated that he wasn't getting back to me to discuss gift options, when he finally calls and says this. I said OK - what happened. He begins to tell me that he is at the ER and has fallen off a ladder. I told him I would be right there. I intentionally calmed myself and calmly left, drove to the ER, praying all the way there. I knew, in my heart of hearts, that he was OK - that he was taken care of. I have no explanation for this feeling, but panic never came into my being. I arrived just as they were coming to get him in the ER waiting room. He was in a wheelchair, and they wheeled him back. Long story short, he fell from a 15 foot extension ladder, and escaped with a bruised right heelbone, and a laceration and bruised arm. Nothing short of a miracle. The other day PJ showed me his 'angel grip' on his arm - there are 2 small round bruises on his forearm, like fingerprints, as if someone caught him on his way down.
So I am blessed enough to have the BEST circle of friends who gets my kids attended to while I tend to my husband - I just can't believe how blessed I am sometimes.
Now, flash forward to the next day, I am heading to my WOW bible study group, have a great session and upon leaving, I buckle Ginger into her carseat, turn around to head around the car when I slam my right big toe into the tire of the car parked next to me. It feels like any other time I've really stubbed my toe - so I close my eyes and take a deep breath, look down to see my toenail half ripped out of the nail bed, and blood literally pouring out of my toe. I immediately thought 'are you serious? did this really just happen?' Luckily, once again, this awesome circle of friends and community at my church surround me and get my kid inside and me inside and we asses the situation - I need to go to someone, quickly. So we choose Urgent Care - thank you Debbie for the ride - and now I get to call PJ and say 'I'm OK' - which we are totally laughing at this point, and he tells me 'you just couldn't let me have my moment, could you ? you trump me with your big toenail'. So I get there fully expecting for the doc to remove the toenail, but he tells me he really wants to try to protect the nail bed - (this is gross, so prepare yourself) by pushing the toenail back into the nailbed and then suturing it in place. He then tries to do this, right there, he tries to push the toenail back into my nail bed - and I finally understand the deep relationship between pain and cursing. Words came to me that I haven't thought of since my teenage years. He then decides that perhaps I need a local as he has to cut into my nail bed to put the nail back in then suture it closed. Wha???? We have to go to another room for that. Now, I'm a little concerned, and not quite as brave as I thought I was walking in. I call PJ and tell him what is going on, and get a little emotional I'll admit. He says he is coming. Then I realize I better call CTCA and see if I am even allowed to have this done - where are my platelets? I get my care manager on the phone, tell her what is going on, and after completely grossing her out, she thankfully checks my last labs from the prior week and I was in pretty good shape. Thank God! So after 3 - yes 3 locals shot into my big toe - he indeed cut into my nail bed, shoved the nail back in, then after breaking 2 very large needles, he sutured it all into place, then cut the nail back. I tell you my friends, I have never felt such pain as this - it was brutal. I totally get the toenail torture thing, totally. So picture PJ and I both hobbling around our house, both with right foot injuries. Ridiculous I tell you, ridiculous.
It is healing now, but when we showed up for my treatment on Friday, my doc took one look at my toe and said 'you aren't getting treatment today'. Seriously? My platelets were ok - good enough for treatment but if he had given me chemo my platelets normally drop and I could have bled out. Nice. Especially nice since I had asked if this was OK and was told to come in. ARG!! So basically we drove to Goodyear for me to get a new dressing on my toe from an official 'wound nurse'. Impressive, I'll admit, but still.
So my treatment was rescheduled for just this past Tues. Monday was my sweet Ginger's 4th birthday - and she and I just had the best day. It is tradition in our house to decorate the house for your birthday so when you wake up in the morning you are greeted with signs and balloons and streamers - and of course, gifts. It was a long day though, and as the day wore on, I noticed that my neuropathy has started to worsen. It was now starting to go up my arms, as I felt the tingling on my wrists and was having trouble grasping things. Here's what is actually happening - chemotherapy kills fast dividing cells - like cancer - also hair, and nerve endings. So with the nerve endings being compromised, the wrong messages get sent to my brain when I go to touch things, pick up things, etc. Instead of me feeling what I'm touching, I'm feeling tingling and numbness. This is happening on the bottom of my feet, both legs, my full hands, and now my wrists into my arms. By Monday evening, I completely broke down and just cried. From having trouble getting Ginger her meds, to feeling like I couldn't hold a glass in my hand I felt like such a failure as a mom. I'm so tired of not feeling like the woman I want to be. The wife I want to be, the mother and daughter I want to be. This disease just seems to keep throwing road blocks in my way on all levels of this. PJ didn't want me to have another treatment of Halivan, and I understood why - he doesn't like seeing me suffer like this, and wants to fix it. But I know that this drug is kinda the only one left on the table here. If we change drugs, it would be one that I've already been on, and although I feel Taxol worked the first time, my doctor feels that this drug is the best one for me right now. So they put me in occupational therapy to tackle the neuropathy, which involved a brief emotional breakdown for me - OH - PJ couldn't come with me to treatment on Tues as Madeline was throwing up all morning, so he stayed home to play Mr. Mom while my dear friend Debbie graciously took her whole day to spend with me. This was totally by God's design, she was awesome. Anyhoo, occupational therapy ends up giving me these gloves and socks that have this small electrical unit hooked up to them - I wear these, dampened, once a day for a scheduled amount of time, and it is supposed to stimulate new nerve growth. I have to do this for 30 days, we'll see. So there's some hope. Also, my naturopath has put me on an additional B vitamin, also supposed to help. I am also now able to take milk thistle for my liver and kidney function, and I'm pretty thrilled about that. My doc is concerned about my neupopathy, and he conducted some neurological tests on me to make sure it hasn't gone far enough to effect my balance. We are good there - didn't pass with flying colors, but I passed enough for him to feel confident to have treatment. The last treatment of cycle 3 in fact. So now, I wait for 2 weeks and then get scanned. My PET scan is scheduled for May 18th.
I am hopeful - the pain I was experiencing has been gone for some time - in fact, I've not needed any sort of pain medication of any sort for some time now - which is a very hopeful sign. And that pain diminished pretty much after my first treatment. I know that my thoughts MUST line up with God's Word - they MUST. Anything that doesn't line up with God's Word must be cast out - but shit, that is hard to do. Especially when I don't feel well, when the side effects just seem to take over. I need to keep my head in the game and tell myself that this is only temporary, that I must suffer only temporarily, and that I will indeed be healed by the stripes of Jesus. His Word says I will. And I need to believe that with all my being, but it is hard to do sometimes. Even if I don't 'feel' it, I am saying it - then hoping my feelings will catch up. I guess it doesn't help that I recently lost a friend to cancer a week or so ago. She had stage IV lung cancer, and it took her life 18 months after diagnosis. Hard to watch that, and still keep on keepin on. But I will not live in fear - I will not. I live each day to its fullest, or try to anyway, and keep trying to be the best wife, mother, daughter, friend and child of God that I have been placed on this earth to be. I try to start each day lately by asking the Lord to show me how to be a blessing to someone else - get the focus off me and onto someone else who needs loved on. It helps, immensely, and it what I believe we are all supposed to do anyway.
So that should catch ya'll up for now. It's taking me forever to type this as I have to cope with not feeling the keys beneath my fingertips, just makes me pay attention a little differently than before. I want to share something that Madeline said to me recently. I was in the kitchen and dropped something on the floor and I said something like 'dang it' or something like that. She came into the kitchen and asked me what was wrong. I told her that the medicine that Mommy is getting to kill her cancer is now making her not always feel things the right way with her fingers and that I am frustrated. She looked at me and said "well, at least you still have your ears to hear and your eyes to see with". I said "indeed I do Madeline, indeed I do". There's some perspective for ya, eh?
God Bless -
Dina
So I am blessed enough to have the BEST circle of friends who gets my kids attended to while I tend to my husband - I just can't believe how blessed I am sometimes.
Now, flash forward to the next day, I am heading to my WOW bible study group, have a great session and upon leaving, I buckle Ginger into her carseat, turn around to head around the car when I slam my right big toe into the tire of the car parked next to me. It feels like any other time I've really stubbed my toe - so I close my eyes and take a deep breath, look down to see my toenail half ripped out of the nail bed, and blood literally pouring out of my toe. I immediately thought 'are you serious? did this really just happen?' Luckily, once again, this awesome circle of friends and community at my church surround me and get my kid inside and me inside and we asses the situation - I need to go to someone, quickly. So we choose Urgent Care - thank you Debbie for the ride - and now I get to call PJ and say 'I'm OK' - which we are totally laughing at this point, and he tells me 'you just couldn't let me have my moment, could you ? you trump me with your big toenail'. So I get there fully expecting for the doc to remove the toenail, but he tells me he really wants to try to protect the nail bed - (this is gross, so prepare yourself) by pushing the toenail back into the nailbed and then suturing it in place. He then tries to do this, right there, he tries to push the toenail back into my nail bed - and I finally understand the deep relationship between pain and cursing. Words came to me that I haven't thought of since my teenage years. He then decides that perhaps I need a local as he has to cut into my nail bed to put the nail back in then suture it closed. Wha???? We have to go to another room for that. Now, I'm a little concerned, and not quite as brave as I thought I was walking in. I call PJ and tell him what is going on, and get a little emotional I'll admit. He says he is coming. Then I realize I better call CTCA and see if I am even allowed to have this done - where are my platelets? I get my care manager on the phone, tell her what is going on, and after completely grossing her out, she thankfully checks my last labs from the prior week and I was in pretty good shape. Thank God! So after 3 - yes 3 locals shot into my big toe - he indeed cut into my nail bed, shoved the nail back in, then after breaking 2 very large needles, he sutured it all into place, then cut the nail back. I tell you my friends, I have never felt such pain as this - it was brutal. I totally get the toenail torture thing, totally. So picture PJ and I both hobbling around our house, both with right foot injuries. Ridiculous I tell you, ridiculous.
It is healing now, but when we showed up for my treatment on Friday, my doc took one look at my toe and said 'you aren't getting treatment today'. Seriously? My platelets were ok - good enough for treatment but if he had given me chemo my platelets normally drop and I could have bled out. Nice. Especially nice since I had asked if this was OK and was told to come in. ARG!! So basically we drove to Goodyear for me to get a new dressing on my toe from an official 'wound nurse'. Impressive, I'll admit, but still.
So my treatment was rescheduled for just this past Tues. Monday was my sweet Ginger's 4th birthday - and she and I just had the best day. It is tradition in our house to decorate the house for your birthday so when you wake up in the morning you are greeted with signs and balloons and streamers - and of course, gifts. It was a long day though, and as the day wore on, I noticed that my neuropathy has started to worsen. It was now starting to go up my arms, as I felt the tingling on my wrists and was having trouble grasping things. Here's what is actually happening - chemotherapy kills fast dividing cells - like cancer - also hair, and nerve endings. So with the nerve endings being compromised, the wrong messages get sent to my brain when I go to touch things, pick up things, etc. Instead of me feeling what I'm touching, I'm feeling tingling and numbness. This is happening on the bottom of my feet, both legs, my full hands, and now my wrists into my arms. By Monday evening, I completely broke down and just cried. From having trouble getting Ginger her meds, to feeling like I couldn't hold a glass in my hand I felt like such a failure as a mom. I'm so tired of not feeling like the woman I want to be. The wife I want to be, the mother and daughter I want to be. This disease just seems to keep throwing road blocks in my way on all levels of this. PJ didn't want me to have another treatment of Halivan, and I understood why - he doesn't like seeing me suffer like this, and wants to fix it. But I know that this drug is kinda the only one left on the table here. If we change drugs, it would be one that I've already been on, and although I feel Taxol worked the first time, my doctor feels that this drug is the best one for me right now. So they put me in occupational therapy to tackle the neuropathy, which involved a brief emotional breakdown for me - OH - PJ couldn't come with me to treatment on Tues as Madeline was throwing up all morning, so he stayed home to play Mr. Mom while my dear friend Debbie graciously took her whole day to spend with me. This was totally by God's design, she was awesome. Anyhoo, occupational therapy ends up giving me these gloves and socks that have this small electrical unit hooked up to them - I wear these, dampened, once a day for a scheduled amount of time, and it is supposed to stimulate new nerve growth. I have to do this for 30 days, we'll see. So there's some hope. Also, my naturopath has put me on an additional B vitamin, also supposed to help. I am also now able to take milk thistle for my liver and kidney function, and I'm pretty thrilled about that. My doc is concerned about my neupopathy, and he conducted some neurological tests on me to make sure it hasn't gone far enough to effect my balance. We are good there - didn't pass with flying colors, but I passed enough for him to feel confident to have treatment. The last treatment of cycle 3 in fact. So now, I wait for 2 weeks and then get scanned. My PET scan is scheduled for May 18th.
I am hopeful - the pain I was experiencing has been gone for some time - in fact, I've not needed any sort of pain medication of any sort for some time now - which is a very hopeful sign. And that pain diminished pretty much after my first treatment. I know that my thoughts MUST line up with God's Word - they MUST. Anything that doesn't line up with God's Word must be cast out - but shit, that is hard to do. Especially when I don't feel well, when the side effects just seem to take over. I need to keep my head in the game and tell myself that this is only temporary, that I must suffer only temporarily, and that I will indeed be healed by the stripes of Jesus. His Word says I will. And I need to believe that with all my being, but it is hard to do sometimes. Even if I don't 'feel' it, I am saying it - then hoping my feelings will catch up. I guess it doesn't help that I recently lost a friend to cancer a week or so ago. She had stage IV lung cancer, and it took her life 18 months after diagnosis. Hard to watch that, and still keep on keepin on. But I will not live in fear - I will not. I live each day to its fullest, or try to anyway, and keep trying to be the best wife, mother, daughter, friend and child of God that I have been placed on this earth to be. I try to start each day lately by asking the Lord to show me how to be a blessing to someone else - get the focus off me and onto someone else who needs loved on. It helps, immensely, and it what I believe we are all supposed to do anyway.
So that should catch ya'll up for now. It's taking me forever to type this as I have to cope with not feeling the keys beneath my fingertips, just makes me pay attention a little differently than before. I want to share something that Madeline said to me recently. I was in the kitchen and dropped something on the floor and I said something like 'dang it' or something like that. She came into the kitchen and asked me what was wrong. I told her that the medicine that Mommy is getting to kill her cancer is now making her not always feel things the right way with her fingers and that I am frustrated. She looked at me and said "well, at least you still have your ears to hear and your eyes to see with". I said "indeed I do Madeline, indeed I do". There's some perspective for ya, eh?
God Bless -
Dina
Sunday, April 15, 2012
Is that your liver or are you just happy to see me?
Well, low and behold I was actually able to have treatment on Friday - Hazzah!!! My labs were fine on Wed and held till Fri and we are back on track. I did see a different onc as mine was on vacation, and that was actually a pretty interesting experience.
He asked me lots of questions, and I told him that I had been having some liver pain, as I had mentioned in my previous post. I told him I could feel it - didn't know if it was inflamed or what. He sent me for a sonogram to see if there was anything besides the obvious that was wrong. My chemistries came back 'abnormal' - which to be quite honest, frightened me, since the last time they were 'great'. There is another level they test, the ones they test on newborn babies against jaundice, and that was completely normal, which is good they say, cuz that would indicate liver failure. Oh joy. Just knowing they are looking at that now makes me a bit nervous. So the sonogram revealed that my liver is just 'enlarged'. Ok. Thank you? The doc said it didn't tell us anything we didn't already know. Good. And, how blessed am I that I get the test right then, and get the results from the doc on the phone as I'm in infusion. Very blessed to not do the waiting game. Thank you Lord.
Good news is that they are officially switching me to a day 1 day 15 schedule - again, thank you Lord. No more running to the lab twice a week playing the white blood cell count dance. Now I have treatment, go down for the Nulasta shot the next day - have a week off, then do it again. This means 2 Nulasta shots now, which, is good for the white blood cells, bad for the side effects. The bone pulse pain is so strange, it makes me wanna walk really slow, and carefully, like on egg shells or something. So weird. Those started for me last night after returning home from taking Britt to her dance, and has continued throughout the day today. Taking Aleve - which helps a little. OH - and they have taken me off anything containing acetaminophen - which means no more percocet, no more vicodin - too rough on my liver. The doc said that my liver was probably in the shape it's in because of everything that has been done to it - chemo, more chemo, 1 thereasphere, 2 quadrashpere, chemo, pain meds, now more chemo - seriously, can we give it a break already? I wish I knew what I could eat, ingest, read, massage, something to give it some relief. I lay in bed at night, and place my left hand over it - feeling it under my palm, and pray for healing. I pray for relief of pain, pray for the trust I need in the Lord that He will heal me. Please, heal me. Please.
Bone pain wasn't keeping me from church this morning, although it almost did. I drugged myself with what I could take, which was Aleve and one oxycodone and off we went. So glad I did. Got to see my girls in church with their new Bibles I bought them for Easter, and Britt and her sign language group signed Amazing Grace for the traditional service. Pretty cool. So proud. Then, promptly came home and my awesome hubby put me right into bed. I know I've talked about this bone pain before, these pain 'pulses' if you will, this time they were in my rib cage and my forehead. I climbed into bed, tuned into some sort of Waltons marathon, cuz I realized I never really remembered what that show was all about, and found it really only provided me with creepy in and out dreams of John Boy.
OH - and here's the best part - I forgot to mention this. First of all, I have never really bonded with my nutritionist at CTCA. She and I - well, let's just say our personalities are like oil and water - and anyone that knows me, knows that I'm not real good at hiding it when you annoy me. And she annoyed me - a lot. Well., I'm taking this class called Power Thoughts by Joyce Meyers which basically fixes your brain in certain situations - helps you create a more positive life for yourself through God's word instead of being negative, and judgemental, all those little nuggets we never like to admit to. Well, this weeks power thought was 'I am difficult to offend'. Do you know how hard this is???? I get offended all the time!!! Well, I was able to put this into action with my nutritionist - and let me tell you, it totally worked! Plus, we got to chit chatting and I found out that if I take a teaspoon of honey 15 min before and 15 min after chemo - then 6 hours later - no mouth sores. I did it and she was totally right - no mouth sores! In fact, the dry mouth is about 1/2 as bad as well. What a blessing. If I had continued my bitch face, I never would have been open to this information from her before - thank you Joyce Meyers!!!!
So I am looking forward to a normal week finally. My husband gets to work normal hours, I get to enjoy a normalesque week, and I hopefully heal. I did do something a little crazy. I entered the Ellen Degeneres 'change my life' portion of her show. I told my story (in like 1500 words - yikes) and asked for help in cooking and preparing healthy meals for me and my family on a budget. I just am having the hardest time forming these new habits - or making them stick. I've made small changes, little by little, but I know I need to do more. It's so hard when I'm so frickin tired all the time. I just wish I had someone to come in and show me how to do it. Showed me what to buy and a different way of thinking about food. I wish I had someone to do it for me - but that is never going to happen. I do have such an awesome community that cooks for me and my family on my treatment days - and what a blessing that it is - but I am not talking about that. I'm talking about me and what I am cooking for me and my family to keep them healthy and also help me fight this disease. Everything is so expensive, there has to be an answer somewhere. So - say a prayer for me on that front - cuz that would be wicked cool if her producers picked to help me. Plus, hello?? How cool would it be to meet Ellen Degeneres???
OK - I'm just going to bitch about one more side effect, and that's it I swear. I have neuropathy - bad. I never experienced this with any of the previous chemotherapy drugs I used - but this one is bad. It was just my fingertips at first that were numb, now it's the whole palm of my hand. Also, my legs started feeling numb this weekend. Not to the point that it is effecting my strength or walking or anything, just the nerves are effected to the point where they have a numbness to them. Both legs, the whole legs. Sucks. Totally sucks. I may be setting myself up here, but I am praying that after the third cycle (which ends after my next treatment) I get scanned and hopefully they tell me it's all gone and I can have a break. Please. I need a break.
OK - done. Now I need to get back to the trust part. Ironically enough, my devotion today was just about that - sometimes I think God has a sense of humor about this with me.
"Trust Me, and don't be afraid. Many things feel out of control. Your routines are not running smoothly. You tend to feel more secure when your life is predictable. Let Me lead you to the rock that is higher than you and your circumstances. Take refuge in the shelter of My wings, where you are absolutely secure.
When you are shaken out of your comfortable routines, grip My hand tightly and look for growth opportunities. Instead of bemoaning the loss of your comfort, accept the challenge of something new. I lead you on from glory to glory, making you fit for My kingdom. Say yes to the ways I work in your life. Trust Me, and don't be afraid."
I have to be honest, I read this and at first was VERY irritated at it. Growth opportunities??? I'm sorry, but I'm a little over the 'growth opportunities' already. Have I grown through this disease? Lord yes, and I am grateful - but I am tired. Then, I try to quiet my soul, and know, that anger is really just fear - and I need to turn my fear, into faith. If I get out of my head long enough and actually allow myself to be brought to the rock that is higher than my circumstances, then in fact, I do Trust Him, and I'm not afraid. Shit. Sometimes I hate it when He is always right.;-)
God Bless -
Dina
He asked me lots of questions, and I told him that I had been having some liver pain, as I had mentioned in my previous post. I told him I could feel it - didn't know if it was inflamed or what. He sent me for a sonogram to see if there was anything besides the obvious that was wrong. My chemistries came back 'abnormal' - which to be quite honest, frightened me, since the last time they were 'great'. There is another level they test, the ones they test on newborn babies against jaundice, and that was completely normal, which is good they say, cuz that would indicate liver failure. Oh joy. Just knowing they are looking at that now makes me a bit nervous. So the sonogram revealed that my liver is just 'enlarged'. Ok. Thank you? The doc said it didn't tell us anything we didn't already know. Good. And, how blessed am I that I get the test right then, and get the results from the doc on the phone as I'm in infusion. Very blessed to not do the waiting game. Thank you Lord.
Good news is that they are officially switching me to a day 1 day 15 schedule - again, thank you Lord. No more running to the lab twice a week playing the white blood cell count dance. Now I have treatment, go down for the Nulasta shot the next day - have a week off, then do it again. This means 2 Nulasta shots now, which, is good for the white blood cells, bad for the side effects. The bone pulse pain is so strange, it makes me wanna walk really slow, and carefully, like on egg shells or something. So weird. Those started for me last night after returning home from taking Britt to her dance, and has continued throughout the day today. Taking Aleve - which helps a little. OH - and they have taken me off anything containing acetaminophen - which means no more percocet, no more vicodin - too rough on my liver. The doc said that my liver was probably in the shape it's in because of everything that has been done to it - chemo, more chemo, 1 thereasphere, 2 quadrashpere, chemo, pain meds, now more chemo - seriously, can we give it a break already? I wish I knew what I could eat, ingest, read, massage, something to give it some relief. I lay in bed at night, and place my left hand over it - feeling it under my palm, and pray for healing. I pray for relief of pain, pray for the trust I need in the Lord that He will heal me. Please, heal me. Please.
Bone pain wasn't keeping me from church this morning, although it almost did. I drugged myself with what I could take, which was Aleve and one oxycodone and off we went. So glad I did. Got to see my girls in church with their new Bibles I bought them for Easter, and Britt and her sign language group signed Amazing Grace for the traditional service. Pretty cool. So proud. Then, promptly came home and my awesome hubby put me right into bed. I know I've talked about this bone pain before, these pain 'pulses' if you will, this time they were in my rib cage and my forehead. I climbed into bed, tuned into some sort of Waltons marathon, cuz I realized I never really remembered what that show was all about, and found it really only provided me with creepy in and out dreams of John Boy.
OH - and here's the best part - I forgot to mention this. First of all, I have never really bonded with my nutritionist at CTCA. She and I - well, let's just say our personalities are like oil and water - and anyone that knows me, knows that I'm not real good at hiding it when you annoy me. And she annoyed me - a lot. Well., I'm taking this class called Power Thoughts by Joyce Meyers which basically fixes your brain in certain situations - helps you create a more positive life for yourself through God's word instead of being negative, and judgemental, all those little nuggets we never like to admit to. Well, this weeks power thought was 'I am difficult to offend'. Do you know how hard this is???? I get offended all the time!!! Well, I was able to put this into action with my nutritionist - and let me tell you, it totally worked! Plus, we got to chit chatting and I found out that if I take a teaspoon of honey 15 min before and 15 min after chemo - then 6 hours later - no mouth sores. I did it and she was totally right - no mouth sores! In fact, the dry mouth is about 1/2 as bad as well. What a blessing. If I had continued my bitch face, I never would have been open to this information from her before - thank you Joyce Meyers!!!!
So I am looking forward to a normal week finally. My husband gets to work normal hours, I get to enjoy a normalesque week, and I hopefully heal. I did do something a little crazy. I entered the Ellen Degeneres 'change my life' portion of her show. I told my story (in like 1500 words - yikes) and asked for help in cooking and preparing healthy meals for me and my family on a budget. I just am having the hardest time forming these new habits - or making them stick. I've made small changes, little by little, but I know I need to do more. It's so hard when I'm so frickin tired all the time. I just wish I had someone to come in and show me how to do it. Showed me what to buy and a different way of thinking about food. I wish I had someone to do it for me - but that is never going to happen. I do have such an awesome community that cooks for me and my family on my treatment days - and what a blessing that it is - but I am not talking about that. I'm talking about me and what I am cooking for me and my family to keep them healthy and also help me fight this disease. Everything is so expensive, there has to be an answer somewhere. So - say a prayer for me on that front - cuz that would be wicked cool if her producers picked to help me. Plus, hello?? How cool would it be to meet Ellen Degeneres???
OK - I'm just going to bitch about one more side effect, and that's it I swear. I have neuropathy - bad. I never experienced this with any of the previous chemotherapy drugs I used - but this one is bad. It was just my fingertips at first that were numb, now it's the whole palm of my hand. Also, my legs started feeling numb this weekend. Not to the point that it is effecting my strength or walking or anything, just the nerves are effected to the point where they have a numbness to them. Both legs, the whole legs. Sucks. Totally sucks. I may be setting myself up here, but I am praying that after the third cycle (which ends after my next treatment) I get scanned and hopefully they tell me it's all gone and I can have a break. Please. I need a break.
OK - done. Now I need to get back to the trust part. Ironically enough, my devotion today was just about that - sometimes I think God has a sense of humor about this with me.
"Trust Me, and don't be afraid. Many things feel out of control. Your routines are not running smoothly. You tend to feel more secure when your life is predictable. Let Me lead you to the rock that is higher than you and your circumstances. Take refuge in the shelter of My wings, where you are absolutely secure.
When you are shaken out of your comfortable routines, grip My hand tightly and look for growth opportunities. Instead of bemoaning the loss of your comfort, accept the challenge of something new. I lead you on from glory to glory, making you fit for My kingdom. Say yes to the ways I work in your life. Trust Me, and don't be afraid."
I have to be honest, I read this and at first was VERY irritated at it. Growth opportunities??? I'm sorry, but I'm a little over the 'growth opportunities' already. Have I grown through this disease? Lord yes, and I am grateful - but I am tired. Then, I try to quiet my soul, and know, that anger is really just fear - and I need to turn my fear, into faith. If I get out of my head long enough and actually allow myself to be brought to the rock that is higher than my circumstances, then in fact, I do Trust Him, and I'm not afraid. Shit. Sometimes I hate it when He is always right.;-)
God Bless -
Dina
Sunday, April 8, 2012
Wheel of Chemo - where will it land this week?
Had the most fabUlous weekend. First off, I luv luv luv Holy week - I just relish in soaking up sermons and scripture so I can continue to learn more and more about Jesus. I get so excited about it. Corny, yes. Then had my husbands cousin and her husband and their two precious little girls come and stay with us over the weekend. It was so much fun. When I first met Peggy, it was like I had already known her forever. Have you ever met someone like that? We just fell into such an immediate comfortable conversation, it was lovely. So I was so excited to get to spend more time with her and her family. Our girls just got along swimmingly, and to have my home filled with giggles and laughter and love - was just the bomb. Also getting to share our church with them today meant more to me than I can express. So sad to see them pull away today - the house was so quiet. It's so funny what people bring into your life unexpectedly. She is such a great mommy to her little girls, and watching her mother them showed me a calmness that I need to bring to my own mothering. I've lost that lately, and thank you God for showing me this through my wonderful new friend. She also says Yes much more than she says No to her girls. And I'm not talking about them asking for 'things' I'm talking about when they ask her and her husband for 'time'. Playing, coloring, trampoline, being silly outside - anything. I need to do that more too. So thank you Peggy and Brian, for being awesome parents, friends, and showing me some things I need to work on myself.
On the cancer side of life, my blood work which was drawn twice this past week is climbing, but slowly, so once again, no soup for me this week. Which was bittersweet I guess - glad to feel good for our time with our guests - but really want to um, like kill the cancer too ya know? I guess since my levels are down it means the medication is still working, I don't know. Some say that's true some say it's not - does anyone really know? I like to say my hair fell out cuz the medication is working, but I've heard that is bullshit too - it sounds really good when I explain it to my girls, so that's my story and I'm sticking to it. I get my blood drawn again on Wed, then we will see where we are. Oy. Hate this not knowing. Trust. Trust. Trust.
I'm pushing for my treatment to at least be every other week if not every 3 weeks. I can't keep doing this blood level dance. So tired of this. It's draining emotionally, it is driving me crazy from an organizational standpoint in trying to arrange childcare for my kids - and as long as it doesn't screw up the effect of the medication - it would really make my life easier. Then I start thinking that I need to finish this cycle, then do one more then I get scanned - and I initially think YAY! but then I think SHIT! cuz I remember the mental dance I do when I have a scan. I feel like I pray and pray and pray for a certain outcome and it ends up being completely opposite of what I pray for. I'm so tired of that. I need this drug to work, it has to. I don't want to manage these side effects for a year - can you believe they have someone who has been on this for a year? Ugh. I mean, ok - yes, I'll do it if I have to. Of course I will, but I'm really starting to weigh out this 'quality of life' thing. I've had a taste of life on treatment - and this sucks. I can manage most things, I don't want this. This medication sucks, plain and simple. We'll see. I just have to wait and see. And pray. Pray. Pray. Pray.
I watched the movie 'Jesus' today with Madeline. She watched the whole thing w/ me - all 3 1/2 hours - just the two of us. It was awesome. Every night at the dinner table we have a little ritual we do by each of us taking a turn telling the family what the best part of their day was. Did you know that Madeline's best part was watching that movie with me today? I beat out the Easter Bunny, the egg hunt, the candy - well, I didn't, Jesus did. Pretty cool. Happy Easter.
God Bless -
Dina
On the cancer side of life, my blood work which was drawn twice this past week is climbing, but slowly, so once again, no soup for me this week. Which was bittersweet I guess - glad to feel good for our time with our guests - but really want to um, like kill the cancer too ya know? I guess since my levels are down it means the medication is still working, I don't know. Some say that's true some say it's not - does anyone really know? I like to say my hair fell out cuz the medication is working, but I've heard that is bullshit too - it sounds really good when I explain it to my girls, so that's my story and I'm sticking to it. I get my blood drawn again on Wed, then we will see where we are. Oy. Hate this not knowing. Trust. Trust. Trust.
I'm pushing for my treatment to at least be every other week if not every 3 weeks. I can't keep doing this blood level dance. So tired of this. It's draining emotionally, it is driving me crazy from an organizational standpoint in trying to arrange childcare for my kids - and as long as it doesn't screw up the effect of the medication - it would really make my life easier. Then I start thinking that I need to finish this cycle, then do one more then I get scanned - and I initially think YAY! but then I think SHIT! cuz I remember the mental dance I do when I have a scan. I feel like I pray and pray and pray for a certain outcome and it ends up being completely opposite of what I pray for. I'm so tired of that. I need this drug to work, it has to. I don't want to manage these side effects for a year - can you believe they have someone who has been on this for a year? Ugh. I mean, ok - yes, I'll do it if I have to. Of course I will, but I'm really starting to weigh out this 'quality of life' thing. I've had a taste of life on treatment - and this sucks. I can manage most things, I don't want this. This medication sucks, plain and simple. We'll see. I just have to wait and see. And pray. Pray. Pray. Pray.
I watched the movie 'Jesus' today with Madeline. She watched the whole thing w/ me - all 3 1/2 hours - just the two of us. It was awesome. Every night at the dinner table we have a little ritual we do by each of us taking a turn telling the family what the best part of their day was. Did you know that Madeline's best part was watching that movie with me today? I beat out the Easter Bunny, the egg hunt, the candy - well, I didn't, Jesus did. Pretty cool. Happy Easter.
God Bless -
Dina
Sunday, April 1, 2012
The Hallivan Dance continues......
So, get this - my blood work comes back completely fine from my Wed draw - which I get the results from on Thurs, green light to Goodyear, right? So we get there on Friday and we are ready to go - I was only a little hesitant as my side effects were still kind of in full force and the thought of having another treatment gave me a little fear of side effect overload - and my blood work was once again in the hole. Can you believe this?? My white blood cell count went from 10,000 to 2,000 in less than 48 hours. My doc even said he hadn't seen this before. He ordered my labs again just to double check because he didn't believe it. Crazy. So home we went. I'm going to get labs done on Monday and see where we are, then just take it from there I guess. I'm back on antibiotic again, and just realized I ate an entirely fresh organic salad tonight with dinner. Ooops. So there you have it.
As I process these events, I am trying, so hard, to just let it be what it is supposed to be. I mean, thank God they did do my labs, right? They didn't just go off the Wed results, they do my labs every time and for that, I am truly thankful. However, I, if you haven't figured this out yet, am a planner. I like to know when things are happening, where, for how long, and how much it is going to cost if any, so I can organize my life. I would love to be one of those fly by the seat of your pants kinda ladies, alas, I am not. So when these last minute change of plans things happen, it really throws me - physically and mentally. One, it freaks me out my body is doing this - it is surreal to know I can feel one way, and my body behaves completely opposite. More on that later.
So hopefully I will be able to have treatment next Friday, and I just should probably lay low until my numbers come up again, but I must go to church tomorrow, I just can't NOT go. It fills me too much to miss. It feels lately the more I try and go with the flow and work this new treatment into my life, the more it continues to change. Like I'm supposed to be paying attention to it more, or in a different way - I don't know.
The trip to Goodyear was not for nothing. I had a really powerful meeting with my Mind, Body, Spirit guy which turned out to be extremely powerful for me. He and I have been discussing my relationship with my mother. It has been a very interesting dynamic between my mother and I as of late - trying to play the daughter role to an ailing mother, watching her fight her own stage IV lung cancer, and trying to adapt to the inherent role reversal of the child suddenly parenting the parent. Problem is, I think I'd be so much better at this transition if I wasn't fighting stage IV breast cancer myself, thus subconsciously putting myself in a position as a daughter who really wants her mom to mother her. It's like we are both fighting for the child role. And she's really winning. I need to give her some grace. Her choices about her life, I need to forgive her for her addictions that have guided her much through her life. I never considered the biological piece of her, but both of her parents were alcoholics, and that has to factor into her 'person' and what she has gone through her life. Fact is, I've been pissed off about it all these years, bringing it into my relationship with her, while she just carries on as usual. Only hurts me. I don't have to agree with it, and I won't forget, but I need to forgive her. Jesus said 'Forgive them Father, for they know not what they do'. If He can forgive complete strangers for doing the horrific things that were done to him, I think I can work at forgiving my mother for choosing her addiction over her life. I do feel that yes, there is a human choice here too - she has always had the power to choose to drink, choose to smoke - but I also think some people are just stronger than others, and some people are strong enough to make those choices and fight right through them to the other side. Some are not.
I've got neuropathy this time, numbing of the tips of my fingers - so I have found myself dropping things more often. Also slight numbing of my lips. Annoying more than anything. The mouth thing has really been the most frustrating - nothing tasting right - and such dry mouth - so gross. Back to the extreme constipation too - major ouch and bleeding hemorrhoids - so much fun. I just want to do this, get it done, and then stop this chemo thing. I'm trying so hard to trust. Trust. Trust. That He knows what is best, has trusted me with this suffering. Truth be told? Some days I want to just stay in bed and sleep. Sleep it all away. That's normal right? Funny, when I start thinking this way, Ginger will come in and ask me to tickle her back to help her fall asleep, or Madeline will call for me to come in and snuggle with her. I know that is not by mistake.
I've been going back and forth on completely shaving my head. I'm holding onto this patchy 1/4 inch hair, so I can have some resemblance of a hairline for whatever reason. I have decided however that I will henna tattoo my head, I think that would be wicked cool. That way maybe I would feel comfortable walking around in public without a scarf on. PJ said he would do it, I found a website, 'chemo chicks' that sells these kits to make the paint and has the templates. Super excited about that.
Trying hard this evening to keep my perspective. It wains sometimes, truth be told, and tonight, is one of those nights. I can feel my liver when I touch my abdomen. I can feel it's outline, and I don't have to press very hard at all. What does that mean? That it's inflamed? I have no frickin clue - just know I haven't been able to feel it before, not like this, not ever. Yet, once again, I feel pretty much fine. Tired, yes, but I jumped on the trampoline with my kids yesterday, and cleaned the front and back porches - doing chores, making dinner, blah blah blah. So frickin frustrating to feel one way and have your body behave in a completely contradictory manner - so out of control feeling. I guess I get the scripture 'the spirit is willing but the flesh is weak'. Sorry, this is getting depressing now, isn't it. Ugh.
Well, hate to end on a depressing note, but I'm so sleepy now, and it's very late. I'm going to go the scripture my blessed babysitter, Anna, spoke to me when I got home from CTCA on Friday, she said it's her 'life verse' - which is pretty inspiring considering she is a mere 16. Romans 8: 28 - get how frickin appropriate this is, especially now that I look at it again after writing this post: ' And we know that God causes everything to work together for the good of those who love God and are called according to his purpose for them'. Wow. Thanks Anna, you rock.
God Bless -
Dina
As I process these events, I am trying, so hard, to just let it be what it is supposed to be. I mean, thank God they did do my labs, right? They didn't just go off the Wed results, they do my labs every time and for that, I am truly thankful. However, I, if you haven't figured this out yet, am a planner. I like to know when things are happening, where, for how long, and how much it is going to cost if any, so I can organize my life. I would love to be one of those fly by the seat of your pants kinda ladies, alas, I am not. So when these last minute change of plans things happen, it really throws me - physically and mentally. One, it freaks me out my body is doing this - it is surreal to know I can feel one way, and my body behaves completely opposite. More on that later.
So hopefully I will be able to have treatment next Friday, and I just should probably lay low until my numbers come up again, but I must go to church tomorrow, I just can't NOT go. It fills me too much to miss. It feels lately the more I try and go with the flow and work this new treatment into my life, the more it continues to change. Like I'm supposed to be paying attention to it more, or in a different way - I don't know.
The trip to Goodyear was not for nothing. I had a really powerful meeting with my Mind, Body, Spirit guy which turned out to be extremely powerful for me. He and I have been discussing my relationship with my mother. It has been a very interesting dynamic between my mother and I as of late - trying to play the daughter role to an ailing mother, watching her fight her own stage IV lung cancer, and trying to adapt to the inherent role reversal of the child suddenly parenting the parent. Problem is, I think I'd be so much better at this transition if I wasn't fighting stage IV breast cancer myself, thus subconsciously putting myself in a position as a daughter who really wants her mom to mother her. It's like we are both fighting for the child role. And she's really winning. I need to give her some grace. Her choices about her life, I need to forgive her for her addictions that have guided her much through her life. I never considered the biological piece of her, but both of her parents were alcoholics, and that has to factor into her 'person' and what she has gone through her life. Fact is, I've been pissed off about it all these years, bringing it into my relationship with her, while she just carries on as usual. Only hurts me. I don't have to agree with it, and I won't forget, but I need to forgive her. Jesus said 'Forgive them Father, for they know not what they do'. If He can forgive complete strangers for doing the horrific things that were done to him, I think I can work at forgiving my mother for choosing her addiction over her life. I do feel that yes, there is a human choice here too - she has always had the power to choose to drink, choose to smoke - but I also think some people are just stronger than others, and some people are strong enough to make those choices and fight right through them to the other side. Some are not.
I've got neuropathy this time, numbing of the tips of my fingers - so I have found myself dropping things more often. Also slight numbing of my lips. Annoying more than anything. The mouth thing has really been the most frustrating - nothing tasting right - and such dry mouth - so gross. Back to the extreme constipation too - major ouch and bleeding hemorrhoids - so much fun. I just want to do this, get it done, and then stop this chemo thing. I'm trying so hard to trust. Trust. Trust. That He knows what is best, has trusted me with this suffering. Truth be told? Some days I want to just stay in bed and sleep. Sleep it all away. That's normal right? Funny, when I start thinking this way, Ginger will come in and ask me to tickle her back to help her fall asleep, or Madeline will call for me to come in and snuggle with her. I know that is not by mistake.
I've been going back and forth on completely shaving my head. I'm holding onto this patchy 1/4 inch hair, so I can have some resemblance of a hairline for whatever reason. I have decided however that I will henna tattoo my head, I think that would be wicked cool. That way maybe I would feel comfortable walking around in public without a scarf on. PJ said he would do it, I found a website, 'chemo chicks' that sells these kits to make the paint and has the templates. Super excited about that.
Trying hard this evening to keep my perspective. It wains sometimes, truth be told, and tonight, is one of those nights. I can feel my liver when I touch my abdomen. I can feel it's outline, and I don't have to press very hard at all. What does that mean? That it's inflamed? I have no frickin clue - just know I haven't been able to feel it before, not like this, not ever. Yet, once again, I feel pretty much fine. Tired, yes, but I jumped on the trampoline with my kids yesterday, and cleaned the front and back porches - doing chores, making dinner, blah blah blah. So frickin frustrating to feel one way and have your body behave in a completely contradictory manner - so out of control feeling. I guess I get the scripture 'the spirit is willing but the flesh is weak'. Sorry, this is getting depressing now, isn't it. Ugh.
Well, hate to end on a depressing note, but I'm so sleepy now, and it's very late. I'm going to go the scripture my blessed babysitter, Anna, spoke to me when I got home from CTCA on Friday, she said it's her 'life verse' - which is pretty inspiring considering she is a mere 16. Romans 8: 28 - get how frickin appropriate this is, especially now that I look at it again after writing this post: ' And we know that God causes everything to work together for the good of those who love God and are called according to his purpose for them'. Wow. Thanks Anna, you rock.
God Bless -
Dina
Wednesday, March 28, 2012
I don't FEEL like I lack white blood cells........
Treatment went really well on Friday - my blood work was in a good place, my liver chemistries were finally in a good place, something that hasn't been said in, I don't even know how long - and my doc said he was 'pretty pleased' with that - woo hoo! I like the sound of that.
It's so funny, I don't know what they put in their Benedryl, but I am like, OUT when they give it to me - I'm too sleepy to pray for my actual treatment, too tired to talk, I just literally pass out. Then, since my actual treatment is only a 2-3 minute push, when they're done and say "OK Dina, you're all done!" I'm like all ready to snuggle in and sleep for like and hour or so. They said I could totally do that, but then logic kicks in and I think to myself - seriously Dina, are your really going to snuggle up here in this chemo chair and dream sweet dreams? That's like a total oxymoron, right? So PJ leads me out like some sort of drunken date night. Nice.
Something totally cool that my oncologist recommended that I try is Qi Gong. (pronounced Chee-Kung) It is actually wicked cool. My first session was a little intimidating, a little uncomfortable only because it is something completely new and different to me, but I really am enjoying it. Here's the quick run down of what this is: Qi means breath or air, and can also be referred to as the relationship between matter, energy, and spirit. Qi is also considered to be a focus of energy. Gong is with force or power. The two words together describe the manipulation of energy for purpose, most commonly health. The foundation of this practice is the cultivation of energy and awareness. Lost?
Here's my interpretation - through intentional breathing, I am beginning to learn to empty my mind. Once I learn how to do this, I can then begin to fill it with intentional thoughts. Can I tell you how hard it is to empty your mind? To NOT have thoughts running through your mind all the time? It is a really great relaxation technique and I am super happy to be adding this to my treatment plan. Another cool thing is, my homework, to breathe 108 breaths a day (intentional relaxed breathing) needs to be counted, but not counted in my head. I found that a rosary has 108 beads - coincidence? Probably not. I'm able to use the rosary that was given to me by PJ's grandmother as my guide through this. So cool. I was instructed to begin this at night - and as of now, I still haven't been able to get to 108 without falling asleep. Still learning I guess. But sleeping - that's good right?
I thought maybe I was doing better with my side effects since on Sunday, although my taste buds are completely shot which sooooo sucks - I felt pretty good otherwise. Then Monday came and I started to fade a bit - then by Mon night into Tues I felt like complete shit. Typical chemo stuff, muscle achy, nauseous, and I found myself on my knees Tues morning, praying, saying to God "please, just let me get my kids to school, that's all I ask, just get my kids to school". Sucks. But - He came through - I got them to school, then had some more energy to go get a new belt for Brittany, then had an amazing prayer time with my dear friend Pastor Mary - and then it was like someone flipped a switch. Just like that, I felt better. I'm giving my props to God on this one. Thanks.
My girls continue to bring me smiles and surprises every day. I cannot thank God enough for my beautiful family. I still battle the guilt that I am not the 'typical wife' to my husband, 'typical mom' to my kids, but to be honest, I don't think PJ signed up for typical when he married me. I know I didn't. We just didn't have THIS in mind. But as I learned today in my first hour of WOW - my story is one that is playing out as I type here. My life has all the makings of a good story, it's got interesting characters, it's got awesome sub characters, it's got conflict, it's got tragedy and heart, it's got twists and turns, it's got humor, it's got all the things people look for in a good story. No one wants to read the book of status quo - that's pretty boring. God needs me to live my story, so those that watch my story can tell it to others. It all brings glory to Him, and that is the ultimate purpose isn't it? For us all to hear 'well done faithful servant'? Well, my story is a good one, and I can't wait to see where it takes me next. I had my blood drawn today to see if I get to have treatment on Friday - we'll see - I don't feel like I have more or less white blood cells - wish I could tell on some level.
I'll check in tomorrow and find out - I trust what needs to happen will happen. Just glad to have some energy back - even if it's only for a couple days. I'm going to try to get to the gym tomorrow. I want to have a chance to try to build up my muscles before they all get shot with a dose of chemo again. Give them a fighting chance kind of theory.
Thank you to all those who pray for me, send me energy, good thoughts. Those who put my needs above their own, who pray for me when I can't, which was just this week actually - thank you. I'm just going to keep on keeping on - that's how I roll today.
God Bless -
Dina
It's so funny, I don't know what they put in their Benedryl, but I am like, OUT when they give it to me - I'm too sleepy to pray for my actual treatment, too tired to talk, I just literally pass out. Then, since my actual treatment is only a 2-3 minute push, when they're done and say "OK Dina, you're all done!" I'm like all ready to snuggle in and sleep for like and hour or so. They said I could totally do that, but then logic kicks in and I think to myself - seriously Dina, are your really going to snuggle up here in this chemo chair and dream sweet dreams? That's like a total oxymoron, right? So PJ leads me out like some sort of drunken date night. Nice.
Something totally cool that my oncologist recommended that I try is Qi Gong. (pronounced Chee-Kung) It is actually wicked cool. My first session was a little intimidating, a little uncomfortable only because it is something completely new and different to me, but I really am enjoying it. Here's the quick run down of what this is: Qi means breath or air, and can also be referred to as the relationship between matter, energy, and spirit. Qi is also considered to be a focus of energy. Gong is with force or power. The two words together describe the manipulation of energy for purpose, most commonly health. The foundation of this practice is the cultivation of energy and awareness. Lost?
Here's my interpretation - through intentional breathing, I am beginning to learn to empty my mind. Once I learn how to do this, I can then begin to fill it with intentional thoughts. Can I tell you how hard it is to empty your mind? To NOT have thoughts running through your mind all the time? It is a really great relaxation technique and I am super happy to be adding this to my treatment plan. Another cool thing is, my homework, to breathe 108 breaths a day (intentional relaxed breathing) needs to be counted, but not counted in my head. I found that a rosary has 108 beads - coincidence? Probably not. I'm able to use the rosary that was given to me by PJ's grandmother as my guide through this. So cool. I was instructed to begin this at night - and as of now, I still haven't been able to get to 108 without falling asleep. Still learning I guess. But sleeping - that's good right?
I thought maybe I was doing better with my side effects since on Sunday, although my taste buds are completely shot which sooooo sucks - I felt pretty good otherwise. Then Monday came and I started to fade a bit - then by Mon night into Tues I felt like complete shit. Typical chemo stuff, muscle achy, nauseous, and I found myself on my knees Tues morning, praying, saying to God "please, just let me get my kids to school, that's all I ask, just get my kids to school". Sucks. But - He came through - I got them to school, then had some more energy to go get a new belt for Brittany, then had an amazing prayer time with my dear friend Pastor Mary - and then it was like someone flipped a switch. Just like that, I felt better. I'm giving my props to God on this one. Thanks.
My girls continue to bring me smiles and surprises every day. I cannot thank God enough for my beautiful family. I still battle the guilt that I am not the 'typical wife' to my husband, 'typical mom' to my kids, but to be honest, I don't think PJ signed up for typical when he married me. I know I didn't. We just didn't have THIS in mind. But as I learned today in my first hour of WOW - my story is one that is playing out as I type here. My life has all the makings of a good story, it's got interesting characters, it's got awesome sub characters, it's got conflict, it's got tragedy and heart, it's got twists and turns, it's got humor, it's got all the things people look for in a good story. No one wants to read the book of status quo - that's pretty boring. God needs me to live my story, so those that watch my story can tell it to others. It all brings glory to Him, and that is the ultimate purpose isn't it? For us all to hear 'well done faithful servant'? Well, my story is a good one, and I can't wait to see where it takes me next. I had my blood drawn today to see if I get to have treatment on Friday - we'll see - I don't feel like I have more or less white blood cells - wish I could tell on some level.
I'll check in tomorrow and find out - I trust what needs to happen will happen. Just glad to have some energy back - even if it's only for a couple days. I'm going to try to get to the gym tomorrow. I want to have a chance to try to build up my muscles before they all get shot with a dose of chemo again. Give them a fighting chance kind of theory.
Thank you to all those who pray for me, send me energy, good thoughts. Those who put my needs above their own, who pray for me when I can't, which was just this week actually - thank you. I'm just going to keep on keeping on - that's how I roll today.
God Bless -
Dina
Thursday, March 22, 2012
Less Hair - More Sparkle.
So my hair is looking so - weird. I still haven't done the close shave thing, I really want to hang onto my hairline as long as I possibly can. It's all bald patchy on top, and bald where my sunglasses rub above my ears - then not bald patchy at all in the back. Instead of 'party in the front, business in the back' I guess you could say I'm 'Patchy in the front; Scratchy in the back'. Hmmm. And I've started getting real creative with my head gear - I wrap a very sparkly scarf around my head then tie it in the back, then sport a baseball type cap. I am now officially addicted to sparkle - of any kind - anywhere. I want sparkly shirts, sparkly shoes, sparkly makeup - you name it, I want it. I think I am suddenly drawn to pretty things to feel pretty everywhere else. When I went through this the first time, I think I was so preoccupied with so many other things, and overwhelmed by all that was going on, I didn't have the ability to figure out how to try to make up for what I had lost in some other way. Does that make sense? It was all so new, so devastating, so difficult. It is still difficult, but I think I am familiar enough with this 'phase' of it to be able to mentally find ways to fill that feminine part of me that is tied to hair. I know that sounds silly, but I am one of those women that just really loves having hair. Now that it's gone, I am tapping into other things that make me feel feminine, pretty, girly. Interesting.
So I have been given some really powerful insight on how to look at people who approach me with the 'how are you feeling' comment. I have been perceiving these inquiries as a sign of my weakness - my sickness - my vulnerability. I react with such defensiveness and anger. More so on the inside, I don't think I'm outwardly rude to anyone, short maybe, but not rude. Inside though I'm filled with such a high level of frustration. Why do I have to feel like I'm supposed to be so strong in front of people? Why do I see people's compassion and concern for me, in whatever way they are able to express it, why do I see this as a sign of weakness on my part? We aren't meant to be 'stoic' through our trials - we are meant to be stoic in our faith, but not necessarily in our outward appearance to others. When people approach me with concern and compassion, aren't they being exactly as He wants us to be towards one another? Isn't this what I should be seeing instead of someone threatening my strength? Like me pretending like nothing is wrong and I'm the same person I was 4 years ago is doing anyone any good - part of it is me needing to embrace fully where I am - which sucks sometimes - and the other part is seeing Jesus in the face of those who are showing me compassion. People aren't always going to say the right thing, act the right way, do the right thing - we're human, we aren't known for our appropriateness - but we're trying, aren't we? This was a HUGE wake up call for me - and I have started to change my heart on this issue. Let the guard down Dina, let it down.
Something else that I have been toying with in my spare time is the possibility that perhaps I have been trusted with this suffering, for a purpose, for a reason. What that is I'm not sure, but I'm starting to really think about this. I in no way believe that God gave this to me - I never have felt that. It was never something I had to convince myself of or had gone back and forth on the issue, it just literally was never something that I have ever felt. How that all relates to this possible theory, I have no idea. Interesting perspective.
1 Timothy 1:12; 1 Peter 4:12.
I have treatment tomorrow. I guess I'm ready for it. I'm a little concerned to do treatment 2 weeks in a row, because of my WBC and also because I just will feel like shit a lot longer than I do when I have it every other week. I'm just feeling better now, and now I get to go get hit again. Trying to keep it all in perspective and keep an open mind. I will get to forgo the steroid tomorrow which is exciting, if I can be excited for something so ridiculous as that, right?
My girls are doing just great - I've just been soaking them in this week, more than usual I think. They are just growing and giggling and being silly so much more lately than usual. I'm so blessed that they are, because they are a reminder to me that they see me as mom, just mom - not Dina who has cancer, not Dina who has no hair, not Dina who gets tired and sick. Just mom. Such a lesson they teach me - everyday. That it's really about this moment, this very moment, right here, right now. I'm so blessed to be constantly reminded to live in the moment. What a cool way to spend each day.
Oy - is it really 11:30? Nighty night. I'll be in touch on how treatment goes tomorrow. Wish me luck once they hook me up!
God Bless -
Dina
So I have been given some really powerful insight on how to look at people who approach me with the 'how are you feeling' comment. I have been perceiving these inquiries as a sign of my weakness - my sickness - my vulnerability. I react with such defensiveness and anger. More so on the inside, I don't think I'm outwardly rude to anyone, short maybe, but not rude. Inside though I'm filled with such a high level of frustration. Why do I have to feel like I'm supposed to be so strong in front of people? Why do I see people's compassion and concern for me, in whatever way they are able to express it, why do I see this as a sign of weakness on my part? We aren't meant to be 'stoic' through our trials - we are meant to be stoic in our faith, but not necessarily in our outward appearance to others. When people approach me with concern and compassion, aren't they being exactly as He wants us to be towards one another? Isn't this what I should be seeing instead of someone threatening my strength? Like me pretending like nothing is wrong and I'm the same person I was 4 years ago is doing anyone any good - part of it is me needing to embrace fully where I am - which sucks sometimes - and the other part is seeing Jesus in the face of those who are showing me compassion. People aren't always going to say the right thing, act the right way, do the right thing - we're human, we aren't known for our appropriateness - but we're trying, aren't we? This was a HUGE wake up call for me - and I have started to change my heart on this issue. Let the guard down Dina, let it down.
Something else that I have been toying with in my spare time is the possibility that perhaps I have been trusted with this suffering, for a purpose, for a reason. What that is I'm not sure, but I'm starting to really think about this. I in no way believe that God gave this to me - I never have felt that. It was never something I had to convince myself of or had gone back and forth on the issue, it just literally was never something that I have ever felt. How that all relates to this possible theory, I have no idea. Interesting perspective.
1 Timothy 1:12; 1 Peter 4:12.
I have treatment tomorrow. I guess I'm ready for it. I'm a little concerned to do treatment 2 weeks in a row, because of my WBC and also because I just will feel like shit a lot longer than I do when I have it every other week. I'm just feeling better now, and now I get to go get hit again. Trying to keep it all in perspective and keep an open mind. I will get to forgo the steroid tomorrow which is exciting, if I can be excited for something so ridiculous as that, right?
My girls are doing just great - I've just been soaking them in this week, more than usual I think. They are just growing and giggling and being silly so much more lately than usual. I'm so blessed that they are, because they are a reminder to me that they see me as mom, just mom - not Dina who has cancer, not Dina who has no hair, not Dina who gets tired and sick. Just mom. Such a lesson they teach me - everyday. That it's really about this moment, this very moment, right here, right now. I'm so blessed to be constantly reminded to live in the moment. What a cool way to spend each day.
Oy - is it really 11:30? Nighty night. I'll be in touch on how treatment goes tomorrow. Wish me luck once they hook me up!
God Bless -
Dina
Thursday, March 15, 2012
Work the Scarf girl - Work It!!
So there I am, in the drive thru at McDonald's - which, by the way, tasted awful before chemo, on chemo it tastes even worse, anyway - I'm ordering and I realize that I forgot one of the children's drinks so I get out the receipt, right there at the window, to ask the simple question "is the drink for the happy meal included or charged separately?" at which time the worker who wasn't looking at me yet but was obviously annoyed I was holding up the line, gives me a resounding "No!" then looks up and sees me - suddenly she is shoving a child size drink in my face with this huge smile on her face telling me it's ok - it's ok - no problem no problem - while I'm trying to hand her a dollar for my mistake. I take the drink and pull away baffled - thinking "what the chicken? how passive aggressive is that?" then I realized I was wearing my scarf. Aaaahhh - the familiar ' oh my God she has cancer and I was angry at her just give her anything she wants so she will go away' scenario. How quickly I forget.
So it was a quasi normal day today, play date at the park which my girls thoroughly enjoyed - and I waded through the once again uncomfortable 'getting to know you' chit chat with a new mom while we both tried to ignore the fact that I am bald wearing a scarf, albeit, a FABULOUS rhinestone embellished pink scarf today. Conversation eventually made its way to me telling 'my story' - the abridged version of course. Why do I feel compelled to leave parts out just because I know it will make people even MORE uncomfortable?? Arg.
Had to get my blood drawn today, which I do weekly now at the local lab then results are faxed down to CTCA. My girls come with me, and Ginger sits on my lap as they put the needle in and draw blood. Madeline got to come this time due to spring break and she announces as the tubes are filling with blood "blood is blue in your veins but it turns red when it comes out of our body". Yay Mads!!! Woot Woot! I'm eager to see what the results are - see where the Nulasta shot has placed me with my WBC count. My mouth irritation is at an all time high today - just all around sore, consistent horrible taste in my mouth, and the only thing that stops it is to fill my mouth with ice cold water. Doesn't lend itself to a lot of conversation time, which I'm sure my husband is secretly grateful for tonight. :-)
I'm watching my kids process this new round of chemo for me- Ginger will bring up the hair loss at least once a day, and for some reason she thinks that she too will be asked to have her hair cut off. I reassure her that no, she will not lose her hair, nor does she have to cut it. She seems so relieved when I tell her this. And she likes to rub my head, a lot. And she likes to kiss my bald spots.
Madeline is processing this so differently - it's like I can see the little wheels spinning in her head. I had to take Brittany to craft night tonight, so PJ fixed dinner for the girls and I guess the following exchange happened:
Madeline: "Going to Phoenix sucks Dad."
PJ: "Well, I suppose it can, but I don't think we should really be saying the word 'sucks'. Let's only use that word at home for now, and only in certain circumstances, when it's appropriate - ok?"
Madeline: "Chemo Sucks. Is that appropriate Dad?"
PJ: "Absolutely Madeline. That is absolutely appropriate."
Yea, I think she gets it way more than she's letting on.
While I was waiting for Brittany at her craft night, I decided to walk through our new Trader Joe's here in Prescott - so exciting. (it doesn't take much up here) Anyways, it was lovely to just stroll through the store and really look at everything at my own pace. I happened to run into someone I knew who greeted me with a rub on the back and a 'how are you feeling?" to which I respond "I'm fine thanks - how are you feeling?" I wasn't being a bitch about it, but I think I secretly had bitch in mind. They are legitimately concerned for me - and I react like some defensive - angry - bald person. At first as I dissected my behavior I thought well, I have been going through chemo although in different forms for the greater part of the last 3 years, I've had shitty days all along and because I had hair, no one knew. Now that I don't have hair, suddenly everyone wants to know how I feel. But in reality, now is different than the greater part of the past 3 years. My cancer has once again spread to my bones, so this is different I suppose. More aggressive medication for a disease that is progressing - it's totally OK for people to ask how I feel. And I don't need to hear this question as a sign of weakness - or think I have to answer the question pretending to be fine. Why do I do that? I mean, I'm not going to break down into great detail about how the meds make me super constipated and I spend the greater part of the morning feeling like I was pushing a log through a pinhole - although I would LUV to do this just once to get a reaction. I guess I just don't know what to say. I don't feel fine - but I'm doing the best I can. Maybe that's what I need to say.
Looking forward to a quiet weekend, there is supposed to be a snow storm, so we are excited to cuddle with my family and just lay low. Having my dad and Nancy over for BBQ tomorrow night as the storm rolls in on Sat - it'll go from like 73 to 44 in 24 hours - cool eh? I know sometimes my dad has trouble looking at me, especially when I look the part like now - and it breaks my heart. When he looks at me I see the tears well up in his eyes - I need to have a conversation with him though, and remind him that I'm fighting - I'm fighting everyday and not giving up - I feel like he needs to hear me say this to him. I love my daddy so much. What a gift that I get to live so close to my family, and see them, hug them, hang out with them - and better yet - my KIDS get to do all this too. They get to know my whole family - what a gift. I'm so glad we live where we do, to be surrounded by family who we can talk to, lean on, cry with, laugh with - I am so blessed, my children are so blessed. It sucks what my girls are being exposed to and the language they are learning, this 'cancer' language - but what they are witnessing, in my home, in my family, in my entire community, the outpour of humanity, is simply indescribable. What a gift.
Well., I think I gotta go grab the bottle of baby fish mouth - oy.
God Bless -
Dina
So it was a quasi normal day today, play date at the park which my girls thoroughly enjoyed - and I waded through the once again uncomfortable 'getting to know you' chit chat with a new mom while we both tried to ignore the fact that I am bald wearing a scarf, albeit, a FABULOUS rhinestone embellished pink scarf today. Conversation eventually made its way to me telling 'my story' - the abridged version of course. Why do I feel compelled to leave parts out just because I know it will make people even MORE uncomfortable?? Arg.
Had to get my blood drawn today, which I do weekly now at the local lab then results are faxed down to CTCA. My girls come with me, and Ginger sits on my lap as they put the needle in and draw blood. Madeline got to come this time due to spring break and she announces as the tubes are filling with blood "blood is blue in your veins but it turns red when it comes out of our body". Yay Mads!!! Woot Woot! I'm eager to see what the results are - see where the Nulasta shot has placed me with my WBC count. My mouth irritation is at an all time high today - just all around sore, consistent horrible taste in my mouth, and the only thing that stops it is to fill my mouth with ice cold water. Doesn't lend itself to a lot of conversation time, which I'm sure my husband is secretly grateful for tonight. :-)
I'm watching my kids process this new round of chemo for me- Ginger will bring up the hair loss at least once a day, and for some reason she thinks that she too will be asked to have her hair cut off. I reassure her that no, she will not lose her hair, nor does she have to cut it. She seems so relieved when I tell her this. And she likes to rub my head, a lot. And she likes to kiss my bald spots.
Madeline is processing this so differently - it's like I can see the little wheels spinning in her head. I had to take Brittany to craft night tonight, so PJ fixed dinner for the girls and I guess the following exchange happened:
Madeline: "Going to Phoenix sucks Dad."
PJ: "Well, I suppose it can, but I don't think we should really be saying the word 'sucks'. Let's only use that word at home for now, and only in certain circumstances, when it's appropriate - ok?"
Madeline: "Chemo Sucks. Is that appropriate Dad?"
PJ: "Absolutely Madeline. That is absolutely appropriate."
Yea, I think she gets it way more than she's letting on.
While I was waiting for Brittany at her craft night, I decided to walk through our new Trader Joe's here in Prescott - so exciting. (it doesn't take much up here) Anyways, it was lovely to just stroll through the store and really look at everything at my own pace. I happened to run into someone I knew who greeted me with a rub on the back and a 'how are you feeling?" to which I respond "I'm fine thanks - how are you feeling?" I wasn't being a bitch about it, but I think I secretly had bitch in mind. They are legitimately concerned for me - and I react like some defensive - angry - bald person. At first as I dissected my behavior I thought well, I have been going through chemo although in different forms for the greater part of the last 3 years, I've had shitty days all along and because I had hair, no one knew. Now that I don't have hair, suddenly everyone wants to know how I feel. But in reality, now is different than the greater part of the past 3 years. My cancer has once again spread to my bones, so this is different I suppose. More aggressive medication for a disease that is progressing - it's totally OK for people to ask how I feel. And I don't need to hear this question as a sign of weakness - or think I have to answer the question pretending to be fine. Why do I do that? I mean, I'm not going to break down into great detail about how the meds make me super constipated and I spend the greater part of the morning feeling like I was pushing a log through a pinhole - although I would LUV to do this just once to get a reaction. I guess I just don't know what to say. I don't feel fine - but I'm doing the best I can. Maybe that's what I need to say.
Looking forward to a quiet weekend, there is supposed to be a snow storm, so we are excited to cuddle with my family and just lay low. Having my dad and Nancy over for BBQ tomorrow night as the storm rolls in on Sat - it'll go from like 73 to 44 in 24 hours - cool eh? I know sometimes my dad has trouble looking at me, especially when I look the part like now - and it breaks my heart. When he looks at me I see the tears well up in his eyes - I need to have a conversation with him though, and remind him that I'm fighting - I'm fighting everyday and not giving up - I feel like he needs to hear me say this to him. I love my daddy so much. What a gift that I get to live so close to my family, and see them, hug them, hang out with them - and better yet - my KIDS get to do all this too. They get to know my whole family - what a gift. I'm so glad we live where we do, to be surrounded by family who we can talk to, lean on, cry with, laugh with - I am so blessed, my children are so blessed. It sucks what my girls are being exposed to and the language they are learning, this 'cancer' language - but what they are witnessing, in my home, in my family, in my entire community, the outpour of humanity, is simply indescribable. What a gift.
Well., I think I gotta go grab the bottle of baby fish mouth - oy.
God Bless -
Dina
Do what the Good Book, do what the Good Book, do what the Good Book tells you to!
The Mighty Wind is one of my most favorite movies of all time.
So I felt like crap on Sunday as I mentioned before, Monday was not much better, then come Tues, around 11am or so, it's like someone switched on the 'ENERGY' light. I felt pretty good, was able to get outside with my girls, cleaned out the minivan and started to investigate what the wretched smell was that has been making all of us gag inside for the past couple days, ran some errands, had a really lovely day. I probably pushed it a little, but I was just to happy to have energy.
Just prior to this burst of energy, ironically enough, was my new weekly prayer time. I am blessed enough to have weekly prayer time now with two of my bestest friends on this planet. We do it via conference call, which isn't traditional I realize, but I figure we are still 'gathering in His name' just not all in the same room. We spoke about my previous post, and some of the things I spoke about in that post - specifically my need to be 'realistic' and me trusting Jesus knows what is 'appropriate' for me. First, let me say, that I am privileged to know these women, much less get to pray with them each week. And I am equally as privileged to know them because they aren't afraid to call me on my misinterpretations of the Word - and I must admit, I got it wrong on my last post. Not wrong on how I felt, how could that be wrong, but I was wrong on where I thought Jesus was in all of this. To think that I didn't know what He wanted for me - was wrong. I do know, and I think, in my current state of fatigue, fear, irritation, frustration, anger, you name it - I got the better of myself. There's a reason I want Jeremiah 29:11 tattooed on my forearm, and I was reminded of John 10:10 as well - a verse I hadn't even been reading deeply enough. He wants me to have a long life - He wants me to have 'rich and satisfying life'. That is Gods Will - 'on earth as it is in heaven'. That's what I need to trust.
It's funny, I have these visions of the way I look and feel and carry myself when I trust 100% all the time, I just gotta work on getting there. I can see it - I just need to get there. I'll admit - I'm tired of this. 3 years I've been doing this - I've only had a break from any sort of chemo way back in 2009 for 3 months, ever since then I've been on some form of treatment. And now, to be back to the infusion cycles and the hair loss, and the constipation and the mouth sores and the nausea and the fatigue and the ass taste in my mouth 24/7 - it has taken its toll I suppose - and my attitude is a little but harder to snap right back on these days. I do - I get there - no worries - it is just a different path this time is all. I have a different route to get there this time. Thank God I have friends that remind me of where I need to be, and what God ultimately wants for me, what He promises me - each of us, all of us.
Both of my children have been trading off little ailments the past couple of weeks and I swear to you it's to remind me of where I am needed and what my focus is supposed to be. I'm a mother - a mother of 2 beautiful children who need me. Who only want to be consoled by their mommy, which is both irritating and flattering all at the same time. I look at them and realize they are why I must push through this rough spot I'm in and be the woman God has created me to be on this earth. It's work, but I will not be afraid and I will be that person I see in my mind who walks around with such trust, no one can touch her. I strive to be that woman. Now, as I know you all are wondering and if you don't follow me on FB you don't know that the stink in my minivan was meat. Yes, meat that I had inadvertently left in a defrosted cold pak in the back of my van. I cannot begin to describe how revolting this was, and I owe poor Brittany an apology because I insinuated to her the other day that she really needed to excuse herself and chew her food better next time. I'm such an ass sometimes.
Something else I've been avoiding are all my incoming medical bills. They have been stacking up and stacking up for sometime and it is time for me to face the music and get a handle on these. The more I am in denial about them, the more they control me - something else my fabulous friend imparted to me. How can anyone on a fixed income even afford to get sick?? Seriously???? And I'm still fighting with frickin insurance companies, it just never ends. So since this is my week off from treatment, that is on my agenda this weekend. Jealous right? I know. Scary thing is, I am on an individual policy which has a wicked high annual deductible, then I literally went uninsured for a spell when I was trying to deny medicare - I just need to breathe deep, go through them one my one, and know I will do what we can do. With God, all things are possible? (there's not supposed to be a question mark there, I just don't think He had medical bills in mind when it was written is all).
Well, off to bed with me - I'm not supposed to be us this late, but the quiet house, which is so rare for me to enjoy while awake, it sometimes is just too inviting. Have a great day tomorrow everyone, Happy Spring Break - we are off to play date #2 of 4 for the week.
God Bless -
Dina
So I felt like crap on Sunday as I mentioned before, Monday was not much better, then come Tues, around 11am or so, it's like someone switched on the 'ENERGY' light. I felt pretty good, was able to get outside with my girls, cleaned out the minivan and started to investigate what the wretched smell was that has been making all of us gag inside for the past couple days, ran some errands, had a really lovely day. I probably pushed it a little, but I was just to happy to have energy.
Just prior to this burst of energy, ironically enough, was my new weekly prayer time. I am blessed enough to have weekly prayer time now with two of my bestest friends on this planet. We do it via conference call, which isn't traditional I realize, but I figure we are still 'gathering in His name' just not all in the same room. We spoke about my previous post, and some of the things I spoke about in that post - specifically my need to be 'realistic' and me trusting Jesus knows what is 'appropriate' for me. First, let me say, that I am privileged to know these women, much less get to pray with them each week. And I am equally as privileged to know them because they aren't afraid to call me on my misinterpretations of the Word - and I must admit, I got it wrong on my last post. Not wrong on how I felt, how could that be wrong, but I was wrong on where I thought Jesus was in all of this. To think that I didn't know what He wanted for me - was wrong. I do know, and I think, in my current state of fatigue, fear, irritation, frustration, anger, you name it - I got the better of myself. There's a reason I want Jeremiah 29:11 tattooed on my forearm, and I was reminded of John 10:10 as well - a verse I hadn't even been reading deeply enough. He wants me to have a long life - He wants me to have 'rich and satisfying life'. That is Gods Will - 'on earth as it is in heaven'. That's what I need to trust.
It's funny, I have these visions of the way I look and feel and carry myself when I trust 100% all the time, I just gotta work on getting there. I can see it - I just need to get there. I'll admit - I'm tired of this. 3 years I've been doing this - I've only had a break from any sort of chemo way back in 2009 for 3 months, ever since then I've been on some form of treatment. And now, to be back to the infusion cycles and the hair loss, and the constipation and the mouth sores and the nausea and the fatigue and the ass taste in my mouth 24/7 - it has taken its toll I suppose - and my attitude is a little but harder to snap right back on these days. I do - I get there - no worries - it is just a different path this time is all. I have a different route to get there this time. Thank God I have friends that remind me of where I need to be, and what God ultimately wants for me, what He promises me - each of us, all of us.
Both of my children have been trading off little ailments the past couple of weeks and I swear to you it's to remind me of where I am needed and what my focus is supposed to be. I'm a mother - a mother of 2 beautiful children who need me. Who only want to be consoled by their mommy, which is both irritating and flattering all at the same time. I look at them and realize they are why I must push through this rough spot I'm in and be the woman God has created me to be on this earth. It's work, but I will not be afraid and I will be that person I see in my mind who walks around with such trust, no one can touch her. I strive to be that woman. Now, as I know you all are wondering and if you don't follow me on FB you don't know that the stink in my minivan was meat. Yes, meat that I had inadvertently left in a defrosted cold pak in the back of my van. I cannot begin to describe how revolting this was, and I owe poor Brittany an apology because I insinuated to her the other day that she really needed to excuse herself and chew her food better next time. I'm such an ass sometimes.
Something else I've been avoiding are all my incoming medical bills. They have been stacking up and stacking up for sometime and it is time for me to face the music and get a handle on these. The more I am in denial about them, the more they control me - something else my fabulous friend imparted to me. How can anyone on a fixed income even afford to get sick?? Seriously???? And I'm still fighting with frickin insurance companies, it just never ends. So since this is my week off from treatment, that is on my agenda this weekend. Jealous right? I know. Scary thing is, I am on an individual policy which has a wicked high annual deductible, then I literally went uninsured for a spell when I was trying to deny medicare - I just need to breathe deep, go through them one my one, and know I will do what we can do. With God, all things are possible? (there's not supposed to be a question mark there, I just don't think He had medical bills in mind when it was written is all).
Well, off to bed with me - I'm not supposed to be us this late, but the quiet house, which is so rare for me to enjoy while awake, it sometimes is just too inviting. Have a great day tomorrow everyone, Happy Spring Break - we are off to play date #2 of 4 for the week.
God Bless -
Dina
Monday, March 12, 2012
I'm not sick - I'm getting better.
Doesn't that have a much better ring to it? That came to me this morning in the shower, as I scrubbed my buzzard head with the cooling effects of Head and Shoulders - love that stuff. I don't like saying that I'm sick, I'm going to start saying that I'm getting better. Done.
So treatment on Friday went great, my white blood cell count was up even higher then when they had taken in on Monday, so that was good. I was in perfect range. I have to admit though, I was all geared up and ready to do this, until I got up there into infusion in that chair, and then I just got nervous. Mostly because everything everyone told me about this drug has gone completely opposite of what people have said. I know that everyone is different and responds differently, it's scary to try to prepare to expect the unexpected, I guess. But I prayed through it, and they must have some kicked up Benedryl because I am sooooo sleepy when they finally give me my treatment. And the fact that it's just a 2-3 min push, they are like "ok, you're done!" and I feel like I could just lay there and snooze for a couple hours. Thus the not able to drive yourself home thingy - got it. We did 1/2 the steroid this time, and I handled it fine, so we will get to forgo that piece next time - YAY!!!! So glad. One less drug in my system. Yuk. Then back down we went for my Nulasta shot on Sat morning, and that went fine. I'm pretty much on the pre-med high for the next 24-36 hours because by the time we get home from church on Sunday, I am so ready to collapse, it's scary. And the bone pain from the Nulasta shot started bright and early Sunday morning as well. So weird - right? Those of you who care, the Nulasta shot makes your body produce more white blood cells, the ones that fight infection, and those come from your bones, mostly your biggest bones in your body - your back, your forehead, your breastbone, your femurs, hips - and the pain feels like, well, it's like pain 'pulses' - quick ones, that take you by surprise, it's quite uncomfortable. They say Claratin is supposed to alleviate this, and oddly enough, I think it does. I take the 24 hour one, and it does help. Did I remember to take one yesterday? Nooooo - dork. Then today I was just weak - just a massive headache and weak - need to remember to keep eating because everything tastes awful - must keep eating. Oy. My mouth sores are not as horrific this time either, which is good. I actually finally tried the infamous 'miracle mouth wash' that the pharmacist will make for you and I have to say I was horrified. It didn't taste bad, but it made the entire inside of my mouth numb, completely numb for like, 30 minutes - no joke. I felt like my mouth was the size of a frickin watermelon - I've decided to call this mouthwash not 'miracle mouth wash' but 'baby fish mouth'. Thank you When Harry Met Sally. I will only use this in case of utter emergency. Yuk.
So church was entertaining. I was so nervous to walk into church because the last time everyone had seen me not only did I have a full head of hair, but I had been giving my testimony at the pulpit in the sanctuary. Now here I come with my little bald head wrapped in some wanna be chic scarf thing. Do you know someone actually came up to me and said 'So I guess the answer is YES then?' and I say 'YES to what?' and they said 'Yes to losing your hair?' Seriously? Well duh - am I not standing in front of you with a frickin scarf on? I need to pray hard for grace here, because I thought I didn't have patience with people the first time I lost my hair, this time is much worse. I will say it again - if you don't know what to say - to me or to anyone in this situation - you have 2 choices - say NOTHING or say THIS SUCKS because it does. That is the most accurate statement anyone can make. Moving on.
I've been really starting to work through the fact that this could really go either way. I've started coming to grips with that and oddly enough, it is quite a peaceful feeling. I feel in my heart of hearts, right now, that I am supposed to fight. However, I know that God knows how this all turns out in the end, and I trust that, whatever that may be. It is a HUGE step for me to be here emotionally, spiritually, and some moments (not days) are easier than others but for the most part, I'm starting to really embrace both possibilities, and trusting that Jesus knows which one is appropriate - and I'm OK with that. Crazy right? PJ and I have started talking in these terms as well, started. I don't want to dwell here, I want to be practical and realistic, then get on with enjoying and loving on one another. As much as we possibly can.
I'm attaching a link to my testimony I gave earlier this month that I mentioned above, if you care to take a listen. Isn't it ironic that the very night after I gave my testimony my hair started falling out in handfuls, and was gone just 2 days later. I feel very passionate about my beliefs, obviously, as there is nothing in this world that has made more perfect sense to me, or been able to comfort me in ways that no one else on this earth has ever been able to do. My relationship with Jesus is one of such monumental friendship, and I hate the fact that this probably sounds 'preachy' to some who read it - I wish it didn't because that is so not who I am, I just feel like I can't adequately express my spirituality into words that can even remotely describe the completeness it has given my life. Perhaps this does, who knows.
http://www.americanlutheran.net/index.php/2012/02/29/personal-story-dina-mountcastle/
God Bless
Dina
So treatment on Friday went great, my white blood cell count was up even higher then when they had taken in on Monday, so that was good. I was in perfect range. I have to admit though, I was all geared up and ready to do this, until I got up there into infusion in that chair, and then I just got nervous. Mostly because everything everyone told me about this drug has gone completely opposite of what people have said. I know that everyone is different and responds differently, it's scary to try to prepare to expect the unexpected, I guess. But I prayed through it, and they must have some kicked up Benedryl because I am sooooo sleepy when they finally give me my treatment. And the fact that it's just a 2-3 min push, they are like "ok, you're done!" and I feel like I could just lay there and snooze for a couple hours. Thus the not able to drive yourself home thingy - got it. We did 1/2 the steroid this time, and I handled it fine, so we will get to forgo that piece next time - YAY!!!! So glad. One less drug in my system. Yuk. Then back down we went for my Nulasta shot on Sat morning, and that went fine. I'm pretty much on the pre-med high for the next 24-36 hours because by the time we get home from church on Sunday, I am so ready to collapse, it's scary. And the bone pain from the Nulasta shot started bright and early Sunday morning as well. So weird - right? Those of you who care, the Nulasta shot makes your body produce more white blood cells, the ones that fight infection, and those come from your bones, mostly your biggest bones in your body - your back, your forehead, your breastbone, your femurs, hips - and the pain feels like, well, it's like pain 'pulses' - quick ones, that take you by surprise, it's quite uncomfortable. They say Claratin is supposed to alleviate this, and oddly enough, I think it does. I take the 24 hour one, and it does help. Did I remember to take one yesterday? Nooooo - dork. Then today I was just weak - just a massive headache and weak - need to remember to keep eating because everything tastes awful - must keep eating. Oy. My mouth sores are not as horrific this time either, which is good. I actually finally tried the infamous 'miracle mouth wash' that the pharmacist will make for you and I have to say I was horrified. It didn't taste bad, but it made the entire inside of my mouth numb, completely numb for like, 30 minutes - no joke. I felt like my mouth was the size of a frickin watermelon - I've decided to call this mouthwash not 'miracle mouth wash' but 'baby fish mouth'. Thank you When Harry Met Sally. I will only use this in case of utter emergency. Yuk.
So church was entertaining. I was so nervous to walk into church because the last time everyone had seen me not only did I have a full head of hair, but I had been giving my testimony at the pulpit in the sanctuary. Now here I come with my little bald head wrapped in some wanna be chic scarf thing. Do you know someone actually came up to me and said 'So I guess the answer is YES then?' and I say 'YES to what?' and they said 'Yes to losing your hair?' Seriously? Well duh - am I not standing in front of you with a frickin scarf on? I need to pray hard for grace here, because I thought I didn't have patience with people the first time I lost my hair, this time is much worse. I will say it again - if you don't know what to say - to me or to anyone in this situation - you have 2 choices - say NOTHING or say THIS SUCKS because it does. That is the most accurate statement anyone can make. Moving on.
I've been really starting to work through the fact that this could really go either way. I've started coming to grips with that and oddly enough, it is quite a peaceful feeling. I feel in my heart of hearts, right now, that I am supposed to fight. However, I know that God knows how this all turns out in the end, and I trust that, whatever that may be. It is a HUGE step for me to be here emotionally, spiritually, and some moments (not days) are easier than others but for the most part, I'm starting to really embrace both possibilities, and trusting that Jesus knows which one is appropriate - and I'm OK with that. Crazy right? PJ and I have started talking in these terms as well, started. I don't want to dwell here, I want to be practical and realistic, then get on with enjoying and loving on one another. As much as we possibly can.
I'm attaching a link to my testimony I gave earlier this month that I mentioned above, if you care to take a listen. Isn't it ironic that the very night after I gave my testimony my hair started falling out in handfuls, and was gone just 2 days later. I feel very passionate about my beliefs, obviously, as there is nothing in this world that has made more perfect sense to me, or been able to comfort me in ways that no one else on this earth has ever been able to do. My relationship with Jesus is one of such monumental friendship, and I hate the fact that this probably sounds 'preachy' to some who read it - I wish it didn't because that is so not who I am, I just feel like I can't adequately express my spirituality into words that can even remotely describe the completeness it has given my life. Perhaps this does, who knows.
http://www.americanlutheran.net/index.php/2012/02/29/personal-story-dina-mountcastle/
God Bless
Dina
Thursday, March 8, 2012
Thank you Sir may I have another????
Well, finally - cleared for my second treatment of Halivan tomorrow. My white blood cell count was finally in a decent range when I went in on Monday for them to OK me for treatment tomorrow. So I get to finish up this cycle. Thank GOD!
My little whisker hairs left graciously on my head by the lovely lady at The Wig Wam who shaved me last weekend are coming out now. I think I was secretly wishing maybe I could keep some resemblance of a hair line. No. And my eye lashes are falling out. What gives here????? I'm the only one at CTCA on this drug who has reacted this way - of course I am!!!!! I guess I don't care if it's doing what it's supposed to be doing - but I'm not going to even know that until I finish 3 cycles - and that just seems like a lifetime away. But, we'll get there. I know, one day at a time - yadda yadda yadda. Part of me just really wants to believe that I'll do 3 rounds then I'll be done. I don't know if I I want to be one of those people who spends the rest of their life on chemo. Definitely not THIS chemo - what else can start falling off of a girl? Seriously! I can't believe my reaction to just one treatment - I'm still baffled by this. I have to let it go - I have to accept that I don't know what is going to happen, and I have to trust Him that He will see me through this. Jeremiah 29:11.
It seems like when it rains, it pours at my house. Maybe I'm not seeing it correctly - but this is how I see it this week. So here I am, with little to no white blood cells, and Ginger gets sick on Tues then has a major seizure Tues night. She starts to aspirate on her vomit, so there I lie, sideways on the carpet along side her, our noses almost touching as I talk her through this seizure, trying to get her to open her mouth and let the vomit out that is coming out of her mouth. As many of these as she has had, I cannot get used to them. I know what to do now, so auto pilot kicks in, but they still just suck, and there's not a damn thing I can do about it. I decided to find the good in this - and found that I will look at this as a reminder of what my purpose is here on this earth - to take care of my children. As soon as she went into this seizure, it was like anything and everything I was feeling was placed on the back burner and I kicked right into 'mom mode'. Don't you think there is something to that? What is it about our mind that can make us kick into overdrive and negate everything we are actually feeling when adrenaline kicks in? So interesting.
I've done ok this week I guess with the 'looks'. I know sometimes people just don't know what to say, but, I hope I don't turn into one of those bitter cancer patients here - the ones all barking at people in the parking lot at Walmart, acting all sorts of crazy yelling 'what are you looking at?' or 'take a picture it'll last longer!' I guess the second time around is a little easier to handle emotionally for me, sucks, but at least I've been here before and know what this feels like, I just need to stay as positive as I was before, despite what I know this looks like to others. So hard to not be defensive, to be bitter, which really means, to be afraid. I am afraid, every day. And I just pray it away - I give it all to Him everyday - practice, practice, practice.
I'm not as envious as I was before - I had a huge problem with that earlier. I'm in a pretty good spot with that now. However, I do find myself envious of peoples health - and I think I need to work on envisioning myself in a healthy place rather than sick place. I'm listening to this amazing meditation/visualization cd that is really helping, gotta focus in on that more.
Well, I haven't had much sleep this week with Ginger being sick and all - makes it for numerous interruptions throughout the night, which, comes with the territory of being a mom - but being a mom while fighting cancer, makes the no sleep thing just a bit more intrusive. Sucks. OH - another weird side effect it this itching - the bottoms of my feet and the palms of my hands itch - and I am either itching or lotioning all the time. Annoying.
I best get some sleep - gotta get rest up for the big 'chemo' day tomorrow. Thought I'd go ahead and share a pic of me with my patchy balding head. Now, I had just taken my makeup off for the evening, so cut me a little slack here, k? And my pups - it's sounds silly, but our dogs are just the best. Our dogs are such a fun part of our family - so cuddly and loving. We love them so much.
Maybe my nickname should be 'patches' now considering my hobo hair here. Well, it'll be gone within a week or so, no need to bitch for too long. Then I can have both girls color on my head with magic markers. Only Madeline was old enough to do it last time, we'll let Ginger take a go at it this time. Washable of course.
God Bless -
Dina
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