I saw the oncologist yesterday. They hoped my joint pain would have resolved itself by now. It hasn't, and I would venture to say it is worse. It sounds like I am being dramatic saying I cannot walk, grasp things, and get up from sitting - but that is the truth. I am slowly becoming crippled. I am still functioning during the day, but I would say my pain level is a 3-4 all day long. By 4pm, I start the decline until I am in full pain by 8pm. The oncologist says that joint pain is common during the Taxol chemo, but it only happens during the treatment - not after it is finished. They cannot explain it. The only other thing they can think of is to send me to a neurologist for a nerve conduction test. I don't know what that entails, but it doesn't sound like I would like it! They need me to start the Tamoxofen - like NOW - so we can't really drag this out to resolve this pain right now. They offered me a drug (Gabapentin) that might help my pain IF it is nerve-related. I am 99% sure this is not nerve related pain. The drug also works to reduce hot flashes. My hot flashes have gotten so bad that my glasses actually fog up! Soon, someone will find a pile of my ashes with my shoes - because I will have spontaneously combusted! Anyway, back to this drug - it used to be a seizure medication, but doesn't work good for that....but they determined that it does help nerve pain and hot flashes. She cautioned that it will make me very sleepy and it will also lower my blood pressure - so when I am laying down, I have to sit up slowly so I don't pass out. Sounds like an evil drug, but I am in so much pain, I am willing to try it.
That was, until I saw my chiropractor today. I ran it by her and she said "If it is Gabapentin, I would NOT take that. At least do some research before you do. It is addictive, messes with your head, and can cause anxiety." EEEeek! She recommends that I continue to resolve my pain holistically - I am thinking chiro, acupuncture, diet, stretching, sleeping - and use medicinal marijuana for the pain. It is natural and has no side effects. So, I am back to looking into that. Is is covered? How does it work? Does my doctor have her license to prescribe it?
Oh, one more thing about the oncologist. I always have to tell them if I have any rashes or unusual symtoms. I started feeling a ton of tiny bumps all over my arms. It feels like a rash, but they aren't red or itchy. I made her feel them. She humored me, but said it was just my hair follicles starting to produce arm hairs again. Ha! My eyelashes have all sprouted. My eyebrows have started growing in, but just mostly just the inside parts, so it looks like I have a surprised expression all the time! My hair is about 1 cm long all over. Slow and steady....
I'm laying in bed now. I just took a Gabapentin pill. I might as well see if it does anything. I'll give it a week. I'm nervous - but I'm also desperate.
Thursday, September 28, 2017
Thursday, September 21, 2017
Fight or Flight
I went to the chiropractor today. It's been a full year since I've been there.....'cause I've kinda been busy this past year. I want to do everything I can to try to get rid of this joint pain. I am also in the process of finding an accupuncuturist who has weekend hours.
My chiropractor, Dr. Amy, had some really good insights for me. She talked about my sympathetic and parasympathetic systems. Your sympathetic system is your "fight or flight" response system. She says that with my surgery and chemo, it put my body into fight or flight. Your body should only be in the this response for seconds at a time.....in emergencies. Chemo attacks your body so severely that it puts you in it for unhealthy amounts of time. When your body is in fight or flight - it goes into emergency mode and doesn't do the normal things well, such as digest your food, sleep, think, etc. I had been pushing through chemo, trying to keep a smile on my face and trying to continue with life as is. I didn't want to use the "cancer card" or "chemo card" and bail on things. Turns out that it is impossible. I have been struggling with the last chemo session pretty badly since May/June. In the middle of that struggle, I was finishing up the school year, packing the house, and moving. I was making a lot of mistakes with my thinking. I was quick to react to things, without thinking. My responses to things were highly impulsive. I was argumentive and defensive. After today's visit and conversation, this is all making sense. Even now, I struggle deeply in social situations. There is definitely a bit (a lot) of insecurity because of my looks right now. But, beyond that, I get super anxious in social situations with groups of people. I have a harder time following the conversations and the joking. I constantly feel like I'm missing something. I blurt things out impulsively, because I feel I don't have time to think (and screen) things. It's an overwhelming feeling. I was trying to explain it to a friend recently and I couldn't express it correctly. Now, thinking in terms of fight or flight - it all makes sense. It also makes sense that my heart rate has been going off the charts for the last 3 months.
I got a nice adjustment today, but more importantly, I got some much-needed advice on how to gain my SELF back. She recommends 1) sleep - good and long sleep (like 8-11 hours a night) to help repair my damage. 2) Meditation - I am going to start some "yoga nigra" tonight and try to incorporate some mindful breathing into my day. 3) Joyful movement - not exercise (cardio is fight or flight), but moving my body with things that make me happy, like taking walks, etc. She recommended the book "Goddesses Never Age" by Christian Northrop, MD. I'm getting it at the library this weekend. I will also go back for adjustments every week or two for a bit.
I finally feel like I have a good start on my path to wellness.
My chiropractor, Dr. Amy, had some really good insights for me. She talked about my sympathetic and parasympathetic systems. Your sympathetic system is your "fight or flight" response system. She says that with my surgery and chemo, it put my body into fight or flight. Your body should only be in the this response for seconds at a time.....in emergencies. Chemo attacks your body so severely that it puts you in it for unhealthy amounts of time. When your body is in fight or flight - it goes into emergency mode and doesn't do the normal things well, such as digest your food, sleep, think, etc. I had been pushing through chemo, trying to keep a smile on my face and trying to continue with life as is. I didn't want to use the "cancer card" or "chemo card" and bail on things. Turns out that it is impossible. I have been struggling with the last chemo session pretty badly since May/June. In the middle of that struggle, I was finishing up the school year, packing the house, and moving. I was making a lot of mistakes with my thinking. I was quick to react to things, without thinking. My responses to things were highly impulsive. I was argumentive and defensive. After today's visit and conversation, this is all making sense. Even now, I struggle deeply in social situations. There is definitely a bit (a lot) of insecurity because of my looks right now. But, beyond that, I get super anxious in social situations with groups of people. I have a harder time following the conversations and the joking. I constantly feel like I'm missing something. I blurt things out impulsively, because I feel I don't have time to think (and screen) things. It's an overwhelming feeling. I was trying to explain it to a friend recently and I couldn't express it correctly. Now, thinking in terms of fight or flight - it all makes sense. It also makes sense that my heart rate has been going off the charts for the last 3 months.
I got a nice adjustment today, but more importantly, I got some much-needed advice on how to gain my SELF back. She recommends 1) sleep - good and long sleep (like 8-11 hours a night) to help repair my damage. 2) Meditation - I am going to start some "yoga nigra" tonight and try to incorporate some mindful breathing into my day. 3) Joyful movement - not exercise (cardio is fight or flight), but moving my body with things that make me happy, like taking walks, etc. She recommended the book "Goddesses Never Age" by Christian Northrop, MD. I'm getting it at the library this weekend. I will also go back for adjustments every week or two for a bit.
I finally feel like I have a good start on my path to wellness.
Sunday, September 17, 2017
Rheumatologist
I saw the rheumatologist on Friday afternoon. And just like I thought, he can see no reason for my joint pain. They had run a bunch of blood tests to check for lupus, thyroid problems, inflammation, etc. Everything was in the normal limits except my vitamin D was low - like all New Yorkers! I do want to do some research on low vitamin D and joint pain. My brother mentioned that there may be a correlation.
Anyway, the doctor asked a lot of questions and looked things up on the internet while I was there. Because he couldn't find a reason for my pain, he wondered if the chemo drugs could cause joint pain. He looked up Taxol and it says that 60% of people who took Taxol have joint pain. I asked him if it was permanent and he didn't have an answer. He recommends I go back to my oncologist and ask her. I go back to her in 2 weeks.
I asked about doing accupuncture for the pain. After I had the boys, I had joint pain in my hands and feet. I did accupuncture for about a year and felt that it helped. Whether it helped for real or just helped me mentally....either way, it helped! He said accupuncture cannot hurt. I probably need to go that route. I do not see this going away on it's own. His recommendation is to take Advil or Aleve in max doses before bed. I tried Advil last night and had a little bit of relief, but not through the whole night. I took 2 Aleve tonight and am curious to see if that helps.
Plugging on......
Anyway, the doctor asked a lot of questions and looked things up on the internet while I was there. Because he couldn't find a reason for my pain, he wondered if the chemo drugs could cause joint pain. He looked up Taxol and it says that 60% of people who took Taxol have joint pain. I asked him if it was permanent and he didn't have an answer. He recommends I go back to my oncologist and ask her. I go back to her in 2 weeks.
I asked about doing accupuncture for the pain. After I had the boys, I had joint pain in my hands and feet. I did accupuncture for about a year and felt that it helped. Whether it helped for real or just helped me mentally....either way, it helped! He said accupuncture cannot hurt. I probably need to go that route. I do not see this going away on it's own. His recommendation is to take Advil or Aleve in max doses before bed. I tried Advil last night and had a little bit of relief, but not through the whole night. I took 2 Aleve tonight and am curious to see if that helps.
Plugging on......
Thursday, September 14, 2017
Still postponing Tamoxofen
I met with the breast surgeon on Monday. Uneventful. Two seconds, a quick exam, and I handed over the co-pay. I have to see her again next year. I asked about my looming mammogram that is always due in November. It was last October that I found my lumps and thus began this damn journey. She said that I have to have a mammogram on both breasts. This terrifies me for two reasons. 1). What if all the stitches in my reconstructed breast rip apart in that machine? 2). What if they find a lump in my right breast? I honestly don't know what scares me more. I shared my concern about my reconstructed breast ripping apart at the seams. So, she said I could skip that side this time, if the mammography place agrees. She said I will definitely need a mammogram and sonogram on the right side.
I called Elizabeth Wende Mammography and scheduled the appointment. They looked at my chart and said, "Plan on being here 2-3 hours." Sigh. I can't remember if they have wine in the waiting room. I need someone to hold my hand and a wine bottle seems like the perfect companion.
Yesterday, I had an appointment with the oncologist. I cannot say enough good things about Interlakes Oncology in Brockport. It was like a reunion with long lost friends! I do love them all. I told the doctor about my joint pain. At night, I cannot grasp the blankets to pull them over me, I cannot turn over in bed because my elbows and hands are in so much pain, and during the day at school, if I get on the ground to work with kids, I struggle to get back on my feet. What the hell!!? It's like I'm 109 years old. She ordered 5 more vials of blood to be taken, so thankfully I had put lidocaine on my port prior to going. She also wants me to see a rheumotologist ASAP. I was supposed to start Tamoxofen a month ago - but had to postpone with the shingles. Now, she does not want to start it due to the body pain because Tamoxofen can also cause body pain. She looked at my nails (which are bruised and only connected by a tiny bit) and said "Ah, yes, Taxol nails. They will grow out." Cool.
Today the rheumotologist called me and is able to get me in tomorrow afternoon. I know they won't find anything. I know I'm going to be extremely frustrated. Again.
I do love being back at school without a million looming absences. It is a nice distraction and feels good to exercise my brain. I am struggling with name recall and following group conversations - especially if they are social in nature. It's weird. I am working with 5th graders this year and have decided not to put myself through the agony of wearing a wig. I spoke to all the classes on the first day of school and told them my story in a 5th grade fashion. It was an absolute relief to put it out there. The kids have been so interested in things and ask questions. It's really great that it is out in the open and not a taboo subject.
My hair is starting to regrow. Gray. Lovely. It's soft and fine like baby hair. I'll get it dyed as soon as I can. It's also straight so far (it's only about a centimeter long), which is weird because it used to be curly/wavy. My eyelashes have also started sprouting. Very exciting. No eyebrows yet. My white blood cell count it back to normal (4.8) so I would guess I could get them tattooed on, but I forgot to ask. I have to go back to the oncologist in 2 weeks with hopes that my joint pain is figured out and Tamoxofen can start. Fingers crossed......even though I really don't want to be on this drug......but I figure I NEED to be to keep my life expectancy up to 90%. I don't want to ruin their data! Ha! :)
I called Elizabeth Wende Mammography and scheduled the appointment. They looked at my chart and said, "Plan on being here 2-3 hours." Sigh. I can't remember if they have wine in the waiting room. I need someone to hold my hand and a wine bottle seems like the perfect companion.
Yesterday, I had an appointment with the oncologist. I cannot say enough good things about Interlakes Oncology in Brockport. It was like a reunion with long lost friends! I do love them all. I told the doctor about my joint pain. At night, I cannot grasp the blankets to pull them over me, I cannot turn over in bed because my elbows and hands are in so much pain, and during the day at school, if I get on the ground to work with kids, I struggle to get back on my feet. What the hell!!? It's like I'm 109 years old. She ordered 5 more vials of blood to be taken, so thankfully I had put lidocaine on my port prior to going. She also wants me to see a rheumotologist ASAP. I was supposed to start Tamoxofen a month ago - but had to postpone with the shingles. Now, she does not want to start it due to the body pain because Tamoxofen can also cause body pain. She looked at my nails (which are bruised and only connected by a tiny bit) and said "Ah, yes, Taxol nails. They will grow out." Cool.
Today the rheumotologist called me and is able to get me in tomorrow afternoon. I know they won't find anything. I know I'm going to be extremely frustrated. Again.
I do love being back at school without a million looming absences. It is a nice distraction and feels good to exercise my brain. I am struggling with name recall and following group conversations - especially if they are social in nature. It's weird. I am working with 5th graders this year and have decided not to put myself through the agony of wearing a wig. I spoke to all the classes on the first day of school and told them my story in a 5th grade fashion. It was an absolute relief to put it out there. The kids have been so interested in things and ask questions. It's really great that it is out in the open and not a taboo subject.
My hair is starting to regrow. Gray. Lovely. It's soft and fine like baby hair. I'll get it dyed as soon as I can. It's also straight so far (it's only about a centimeter long), which is weird because it used to be curly/wavy. My eyelashes have also started sprouting. Very exciting. No eyebrows yet. My white blood cell count it back to normal (4.8) so I would guess I could get them tattooed on, but I forgot to ask. I have to go back to the oncologist in 2 weeks with hopes that my joint pain is figured out and Tamoxofen can start. Fingers crossed......even though I really don't want to be on this drug......but I figure I NEED to be to keep my life expectancy up to 90%. I don't want to ruin their data! Ha! :)
Friday, September 8, 2017
Severe joint pain
Since August 26th, I've been suffering from severe joint pain. I have had joint pain before - for the year after the boys were born - but it was only in my hands and feet. After a year or accupuncture, the pain subsided. This pain is in every single joint in my body: feet, hands, elbows, knees, pelvis, spine. It is ridiculously painful and makes me feel and look like I'm 140 years old when I try to move. I've been trying to figure out why it came on all of a sudden. The day that it started was also the first day that I had stopped my Shingles medication. I also wonder if I've had joint pain all along, but the chemo steroids had masked it. I don't know, but I do know that the pain is so severe that Dave made me call the emergency number at the oncologist's office on a Sunday. They called back and advised me to have my blood labs done. I just got that done today.....so maybe I'll have some answers on Monday.....but, I can't imagine it's going to be anything easy to figure out or solve.
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