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
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