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
DINA'S BOOB BLOG - An online journal of my breast cancer experience.
Saturday, May 26, 2012
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
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