Interestingly, I came upon a Bible verse that is so fitting to my current struggles, it's uncanny ... but NOT coincidental! Actually it's more like a prayer. Isaiah 35:3 says "Strengthen the feeble hands, steady the knees that give way;" Yes Lord!
My visit with Dr. P this week went well. I was sort of dreading it, because I anticipated having to be firm regarding my decision to discontinue the Eribulin. That's a lot of weight for this cancer patient to carry: stopping chemo that my oncologist deemed was (partially) effective on my cancer. Fortunately, I didn't have to do it! Dr. P came in to the exam room and said she really thought I needed to get off of Eribulin since the neuropathy it has caused is interfering so much with my activities of daily living. She went on to say that all of the remaining chemotherapy drugs available to me were just as likely or more likely to cause peripheral neuropathy. So, she recommended that I see Dr. M at the MD Anderson main campus downtown to discuss clinical trial options. She had already spoken to her about me, and an appointment was already scheduled! Why did I ever doubt my medical team at the world's best cancer treatment center?? Or rather, why did I ever doubt that my God HAS this??
Although I'm nervous about the clinical trial ... what kind of drug will it be, what will the schedule be like, what side effects will I experience, etc.... I have renewed hope that perhaps it will work on the cancer! I've had pleural effusions in the past that have completely resolved after a medication/chemo change. If that is what God has in mind, He certainly has the power to make it happen!
As luck would have it, my appointment with Dr. M was scheduled during the one week of Summer that we have a vacation planned. A modest, one-bedroom vacation rental cabin in the Texas Hill Country while all three kids are at camp. Just me & Danny! I've grudgingly accepted the fact that our vacations can no longer be of the active type that I've grown so accustomed to. There won't be any hiking or biking, that's for sure! BUT what it can be is a relaxing time "away from it all" in the company of my favorite man! A much needed respite from cancer treatments, tests, scans, needlesticks and doctor visits. Woohoo!
The controlling side of me was at first upset that the appointment couldn't be moved up to THIS week, and that the next available was all the way to Thursday of the following week. A quick calculation after consulting my extremely thorough and meticulously accurate "Cancer Treatment" note on my iPhone told me that by the time I see Dr. M, I will have received NO cancer treatment for 4 weeks! (cue alarm sounds and lights flashing and a woman's recorded voice stating "Too long! Too long! Too long!) But then I remembered that I am in the hands of my savior and that maybe, just maybe, He wants me to have a nice relaxing vacation and spend some quality time with my husband!
As I mentioned in my previous post, I am SO THANKFUL that Danny is no longer working at the accounting firm. Yes, we needed the extra money, but having him here (at home and at The Pink Ribbon Shop) is so worth it. With all of my cancer-related issues, I appreciate him having the ability to accompany me to my treatments and doctor visits. Since the position he had was through a temporary employment agency, he simply completed his temp contract and called it a day.
I am also thankful that it's Summer. The kids do have activities, but without the added stress and full days of school, it's all a lot more laid back and enjoyable. One of the things I'm currently enjoying, despite my multitude of neuropathy symptoms, is learning to "sign" songs for our church. My daughter Christa has been interested in sign language for many years, having first taken a few "sign language dance" classes, then signing in church under the tutelage of another beautiful young woman, and most recently taking two ASL courses in high school as her foreign language requirements. Tragically, that young woman who began the sign language ministry at our church took her own life last Summer. This was devastating to our congregation, as you can imagine. In honor of Anne, Christa decided to carry on her "Hands Held High" ministry.
Hands Held High appealed to me because firstly, it was always so beautiful and powerful when Anne did it. Then when Christa joined her it was exceptionally so (proud mom talking)! Secondly, I thought "I'd like to try that." Since it was clear that I wouldn't be taking any more dance classes or running any more half marathons, I thought this was something I COULD do. It was Easter of 2013 when I signed for the first time to Big Daddy Weave's "Redeemed." It was an amazing experience, and I am grateful for that time of getting to know Anne's beautiful heart before her passing.
Anyhoo, what I am really enjoying about signing this Summer is getting to spend some one on one time with Christa. I still suffer from chemobrain (at least that's what I blame it on) and so I require a LOT of practice and instruction. So glad I live in the same house as the teacher! She is an awesome, dedicated, leader, and she is so beautiful to watch ... full of emotion. Sometimes it's just me & her signing and the praise team & band singing/playing, but interest is growing and this next time (8/3) there will be 5 of us signing, including her sister! Bethany has agreed to take on a very small part, the introduction to the song, before stepping away and taking her usual place on the drums (where, I might add, she also displays exceptional talent!). We will be signing to "The Well" by Casting Crowns. If you're not familiar with that song, well, look it up. It has amazing lyrics and hopefully we will be able to do those lyrics justice and bring them even more to life, help the words reach people's hearts, with sign. Exciting!
I always seem to have a really low point in my attitude after receiving bad scan news. This is normal! But thankfully, through prayer and the help (and sometimes merely the presence) of family, I eventually find my way to hopefulness or at the least, peace.
"Come to me, all who are weary and burdened, and I will give you rest." Matthew 11:28.
P.S. Yes, I've enlarged the font. Guess my eyes are getting old.
Thursday, July 17, 2014
Sunday, July 13, 2014
Side Effects of Chemo Outweighing Benefits?
Hello all! It's been an eventful two months on the cancer front. I'm so thankful that (1) Danny is no longer working at the accounting firm, and (2) It is Summer so our family's schedule is dialed back quite a bit from its usual craziness. More on both of these later on.
After my last "so far, so good" post, I began experiencing symptoms of peripheral neuropathy. It started out as numbness in the hands and feet. But then it began progressing, and quickly! The numbness started creeping up my legs and up my arms. Oddly, I noticed that my slip-on slippers were coming off around the house, without my knowledge. And I was beginning to drop things if I wasn't paying close attention to the act of holding onto the object. I reported the symptoms, and my concern, to Dr. P and the nurses. The standard medical professional question regarding neuropathy, "Are you having difficulty buttoning your shirts?" was asked by a few different nurses. (I, too, learned this in nursing school. I guess that was the extent of our neuropathy evaluation lesson!) No, no trouble there. I could still button my clothes. But otherwise, the seemingly quick progression of symptoms was quite disconcerting and worrisome to me.
Dr. P recommended that I take Neurontin, starting just at bedtime then gradually increasing until the dose reached three times a day. She said that Neurontin 100mg at bedtime that Dr. Coscio had prescribed months earlier for what I now know was barely perceptible neuropathy symptoms was nowhere near a therapeutic dose. Expectedly, that dose didn't seem to help at all back then, so I had stopped taking it. With the new plan, the problem arose when I was unable to get past twice a day. It made me so tired and groggy! I simply couldn't imagine adding another dose. Additionally, it didn't appear to be working at all on the neuropathy symptoms. Then again I had yet to get up to the recommended therapeutic dose, so who could really say? Since I was distressed and as she considered the side effects, Dr. P recommended that I be seen by an MDA neurologist, since they see lots of patients who have chemotherapy-induced peripheral neuropathy. She also prescribed a different drug: Lyrica, three times a day. This, too, didn't seem to help. In fact, the symptoms were much, much worse, even though I tolerated the Lyrica much better than the Neurontin. Taking it three times a day, I was a little tired but seemed to have a clearer head than when on Neurontin.
Let me clarify what I meant by the symptoms being "much, much worse." This is basically where I am now. I have numbness and tingling in the hands/arms and feet/legs. I also have weakness. I have difficulty walking distances such as from the parking lot to the grocery store. I'm having trouble starting my car, brushing my teeth, wiping myself(!), turning magazine pages, and holding onto things. I can't do or open anything that requires finger strength and/or coordination -- this is probably one of those things that you can't imagine or comprehend the breadth of until it's happening to you. I can't put on earrings or operate necklaces. I have a lot of trouble picking up pills and also Q-tips. My keyboarding has slowed to a crawl and my accuracy sucks since I can't feel or coordinate my fingers. Weirdly, sometimes my middle finger gets bent up under things, such as a shopping cart handle or steering wheel, and I don't even realize it until I see it or it causes pain. And alas, I have a LOT of difficulty (and sometimes find it impossible and require assistance) buttoning my tops and pants/shorts. I can finally answer "yes" to the most popular question! :) At least I still have a sense of humor! (sometimes)
Last weekend, I finally reached my breaking point. I was making pancakes Saturday morning, and I was unable to flip the pancakes in a coordinated fashion. They weren't landing where I wanted them to! I'm normally very good at this (one of my many trivial, unimportant talents!) Then, I couldn't hold on to my fork while eating the pancakes! It fell from my hands once, then I held it, but it was more like it was just resting on my fingers as opposed to being held by them. I CRIED! I know, I know, it seems such a trivial thing to cry over. I was scheduled to start my next cycle of Eribulin on Monday. And at that moment, I decided that I couldn't do it. I actually sobbed through these words to Danny: "I couldn't flip the pancaaaaaakes!" LOL! But I couldn't bear the thought of allowing them to infuse more poison into my veins. See, Eribulin is a known neurotoxic agent. And since my serious symptoms began shortly after starting it, clearly it's the most likely cause.
I notified Dr. P via MDA Secure Messaging that I no longer wished to be on Eribulin, and I cancelled Monday's infusion. She advised me to keep my neurology consult appointment and my appointment with her for the following Monday. Here's where it gets complicated...
My every-3-month scans were done at the end of June (it's actually been 4 months because all was delayed due to radiation.) They are calling it "mixed results." The CT scan of the chest showed "significant enlargement of pleural metastases in the left hemithorax and enlargement of the left pleural effusion in keeping with progressive disease." The CT of the abdomen & pelvis showed "no progression of hepatic disease." The MRIs of the spine showed "widespread osseous metastases of thoracic spine, lumbar spine, and sacro iliac joints with no significant interval change detected ... no disease progression ... positive response to therapy within the lumbar spine."
Dr. P recommended that I stay on Eribulin since it appears to be working on at least some of my cancer. Sorry but I am somewhat out of order here ... the scan results and this recommendation came before my meltdown and cancellation of my next cycle of Eribulin. I suppose this is why it was such an emotional time for me. My doctor is telling me that the chemo I'm on is somewhat working, yet I am making an executive decision to stop it! But here's the thing: I contend that the chemo is not actually working. That's right, Dr. Kim thinks that the improvement shown in the bones is instead a result of the radiation to the spine and sacro-iliacs. The plot thickens!! My tumor markers continue to plummet downward, well into the "normal" range. Dr. Kim can only speculate that this, too, is the result of large doses of radiation therapy to the back (so large, in fact, that she endured MUCH suffering from their side effects in the weeks following RT, and to this day she has a large patch of soft tissue edema on her back that regularly gets displaced into alien-like bulges. Additionally her bowels have never been the same ... but I digress!)
Sooooo, clearly I need to have some discussion with my doctor! Appointment coming soon.
Thanks for hanging in there with me. I appreciate your prayers and support. Thought I was coming out of this "rough patch," but I seem to have slipped right into another one.
After my last "so far, so good" post, I began experiencing symptoms of peripheral neuropathy. It started out as numbness in the hands and feet. But then it began progressing, and quickly! The numbness started creeping up my legs and up my arms. Oddly, I noticed that my slip-on slippers were coming off around the house, without my knowledge. And I was beginning to drop things if I wasn't paying close attention to the act of holding onto the object. I reported the symptoms, and my concern, to Dr. P and the nurses. The standard medical professional question regarding neuropathy, "Are you having difficulty buttoning your shirts?" was asked by a few different nurses. (I, too, learned this in nursing school. I guess that was the extent of our neuropathy evaluation lesson!) No, no trouble there. I could still button my clothes. But otherwise, the seemingly quick progression of symptoms was quite disconcerting and worrisome to me.
Dr. P recommended that I take Neurontin, starting just at bedtime then gradually increasing until the dose reached three times a day. She said that Neurontin 100mg at bedtime that Dr. Coscio had prescribed months earlier for what I now know was barely perceptible neuropathy symptoms was nowhere near a therapeutic dose. Expectedly, that dose didn't seem to help at all back then, so I had stopped taking it. With the new plan, the problem arose when I was unable to get past twice a day. It made me so tired and groggy! I simply couldn't imagine adding another dose. Additionally, it didn't appear to be working at all on the neuropathy symptoms. Then again I had yet to get up to the recommended therapeutic dose, so who could really say? Since I was distressed and as she considered the side effects, Dr. P recommended that I be seen by an MDA neurologist, since they see lots of patients who have chemotherapy-induced peripheral neuropathy. She also prescribed a different drug: Lyrica, three times a day. This, too, didn't seem to help. In fact, the symptoms were much, much worse, even though I tolerated the Lyrica much better than the Neurontin. Taking it three times a day, I was a little tired but seemed to have a clearer head than when on Neurontin.
Let me clarify what I meant by the symptoms being "much, much worse." This is basically where I am now. I have numbness and tingling in the hands/arms and feet/legs. I also have weakness. I have difficulty walking distances such as from the parking lot to the grocery store. I'm having trouble starting my car, brushing my teeth, wiping myself(!), turning magazine pages, and holding onto things. I can't do or open anything that requires finger strength and/or coordination -- this is probably one of those things that you can't imagine or comprehend the breadth of until it's happening to you. I can't put on earrings or operate necklaces. I have a lot of trouble picking up pills and also Q-tips. My keyboarding has slowed to a crawl and my accuracy sucks since I can't feel or coordinate my fingers. Weirdly, sometimes my middle finger gets bent up under things, such as a shopping cart handle or steering wheel, and I don't even realize it until I see it or it causes pain. And alas, I have a LOT of difficulty (and sometimes find it impossible and require assistance) buttoning my tops and pants/shorts. I can finally answer "yes" to the most popular question! :) At least I still have a sense of humor! (sometimes)
Last weekend, I finally reached my breaking point. I was making pancakes Saturday morning, and I was unable to flip the pancakes in a coordinated fashion. They weren't landing where I wanted them to! I'm normally very good at this (one of my many trivial, unimportant talents!) Then, I couldn't hold on to my fork while eating the pancakes! It fell from my hands once, then I held it, but it was more like it was just resting on my fingers as opposed to being held by them. I CRIED! I know, I know, it seems such a trivial thing to cry over. I was scheduled to start my next cycle of Eribulin on Monday. And at that moment, I decided that I couldn't do it. I actually sobbed through these words to Danny: "I couldn't flip the pancaaaaaakes!" LOL! But I couldn't bear the thought of allowing them to infuse more poison into my veins. See, Eribulin is a known neurotoxic agent. And since my serious symptoms began shortly after starting it, clearly it's the most likely cause.
I notified Dr. P via MDA Secure Messaging that I no longer wished to be on Eribulin, and I cancelled Monday's infusion. She advised me to keep my neurology consult appointment and my appointment with her for the following Monday. Here's where it gets complicated...
My every-3-month scans were done at the end of June (it's actually been 4 months because all was delayed due to radiation.) They are calling it "mixed results." The CT scan of the chest showed "significant enlargement of pleural metastases in the left hemithorax and enlargement of the left pleural effusion in keeping with progressive disease." The CT of the abdomen & pelvis showed "no progression of hepatic disease." The MRIs of the spine showed "widespread osseous metastases of thoracic spine, lumbar spine, and sacro iliac joints with no significant interval change detected ... no disease progression ... positive response to therapy within the lumbar spine."
Dr. P recommended that I stay on Eribulin since it appears to be working on at least some of my cancer. Sorry but I am somewhat out of order here ... the scan results and this recommendation came before my meltdown and cancellation of my next cycle of Eribulin. I suppose this is why it was such an emotional time for me. My doctor is telling me that the chemo I'm on is somewhat working, yet I am making an executive decision to stop it! But here's the thing: I contend that the chemo is not actually working. That's right, Dr. Kim thinks that the improvement shown in the bones is instead a result of the radiation to the spine and sacro-iliacs. The plot thickens!! My tumor markers continue to plummet downward, well into the "normal" range. Dr. Kim can only speculate that this, too, is the result of large doses of radiation therapy to the back (so large, in fact, that she endured MUCH suffering from their side effects in the weeks following RT, and to this day she has a large patch of soft tissue edema on her back that regularly gets displaced into alien-like bulges. Additionally her bowels have never been the same ... but I digress!)
Sooooo, clearly I need to have some discussion with my doctor! Appointment coming soon.
Thanks for hanging in there with me. I appreciate your prayers and support. Thought I was coming out of this "rough patch," but I seem to have slipped right into another one.
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