So as some of you know I did get some neuropathy from the chemo. Not as bad as some, but bad enough that I have been experimenting with treatments. I had some limited numbness in my fingers during the end of treatment and through January/February, however, it still remains in my feet. It got really scary there a few months after treatment stopped that I started noticing it more up the insides of my legs on my calves. I did have some thoughts that it was due to me being more active and dressing in REAL clothing again where I had been in jammies and sweats for months!
What does it feel like? Well, it's hard to describe. My toes feel like they are ice cold all the times... sometimes this feels like they are simply cold, sometimes it's like a slight burning cold as in edging on frostbite type of cold. BUT you physically feel them and they feel fine... nice and toasty. In addition to this lovely "chill" they are numb, but not totally numb... it's like there is a few layers of latex gloves over them... so I can feel, but not really well. I feel pressure and I do feel tickles, but at a distance. And yet, saying this they are super sensitive as well, I can feel every grain of dirt on a floor.... but still can't feel the sticker stuck to the bottom of my foot. Weird contradiction in feelings, isn't it? Yeah, I have a hard time wrapping my head around it too... I think, "How on earth can I feel all the GRIT and not the sticker?" Yeah. Weird.
What have I tried so far?
1. Gabapentin. Possible side effects:
a. Common side effects: ataxia (unsteady gait), dizziness, drowsiness, fatigue, fever, nystagmus (twitchy eye movement), sedated state, and viral infection. Other side effects include: blurred vision, diplopia (double vision), peripheral edema (swelling), tremor, amblyopia (lazy eye), irritability, and xerostomia (dry mouth).
b. Negative side effects: After a month I had kankles, as in hugely swollen ankles... and that was a known side effect, so I opted to stop that treatment as an option... swelling of the extremities isn't something I would take lightly.
c. Positive side effects: Well, it really did resolve quite a bit of the numbness in the calves and did wake the toes up a bit more. I didn’t experience any of the common side effects listed with the exception of the above mentioned negative, thus why I discontinued this treatment and wanted to seek others
2. Henna. Henna? Yes, as in the paste you put on your feet to make it a temporary tattoo look, henna.
a. Common Side effects: darkened skin – duh. I’m laughing here.
b. Negative side effects: No true negative side effects are experienced
c. Positive side effects: Limited response. I think it really just gets into the pours and blocks some of the more sensitive feelings you get... but it didn’t' help the numbness or glove wearing feeling.
3. Wanted to try acupuncture as it’s covered by my insurance but there are no providers in my local commute and I’m NOT paying $250 per session, thanks, so back to drugs!
4. Cymbalta.
a. Common side effects: asthenia (weakness), constipation, diarrhea, dizziness, drowsiness, fatigue, hypersomnia (daytime sleepiness), insomnia, nausea, sedated state, headache, and xerostomia (dry mouth). Other side effects include: agitation, erectile dysfunction, nervousness, psychomotor agitation, tension, vomiting, abdominal pain, anorexia, decreased appetite, decreased libido, hyperhidrosis (extreme sweating), loss of libido, and restlessness
b. Negative side effects: I'm feeling a LOT of the side effects from this one that are a bit more concerning, but they state these should wear off after the first week or so... the first morning I got up and almost ran into the TV, then the wall... yeah, super wobbly and not steady at all and this was a full 12 hours after taking it. AND the sleeping difficulties are truly a bear. First night I woke up at 4:30am and found it hard to go back to sleep... this from the girl that takes MULTIPLE alarms to actually GET me out of bed, I have been out of bed and at work an average of ½ hour early for the duration of taking this drug…. Really – weird. Night two woke at 1:30 and had that feeling of never really going back to sleep, but knew I must have, so I’m sleeping, it’s just restless and broken. Last night was no exception – 4 hours in and *ping* awake and finding it hard to drift back off. Finally looked at the clock. 1:30am. Nope, nope, nope… I do feel like I really did go back to sleep for a few more hours last night. The other thing is DRY MOUTH. Good lord. Yep, it’s there… always have a dry mouth feeling – like after surgery can’t get saliva going if they paid you type of dry mouth. But I drink more tea in the morning and water during the afternoon, so I should be fine. I can’t decide if I have constipation or diarrhea at this point. The first night I had multiple poopcidents in Target (yeah, it was a “fun” shopping trip) then had more issues the next night with running to the potty… it may have been the very same night, who know… but thinking not as I was wearing a shift on the night that I was pausing TV shows constantly to run to the potty (yeah, memory like a steel sieve). Anyway that indicates I was in the pool prior J I didn’t do Target and Pool in the same day. Sort of mystery solved. So… still working out which this is as yesterday I just felt constipated and didn’t go all day long, which at this stage in recovery shouldn’t be surprising to me as my bowel movements are still all over the place where I’m either purging in a day and holding for two/three and repeat. So… this one is up for debate still. I also feel a little “jumpy” twitchy… but not where I can’t control it. I definitely feel a bit “high” at times, but hoping these will pass as time goes and my body adjusts to the drug.
c. Positive side effects: Well, I'm on day three and so far the reaction on day 1 was shockingly GREAT. I can really FEEL my toes, they don't feel quite as muted. There are still a few spots that are "off" like the crooks under the toes on the bottom... they are a bit numb, but the rest are actually feeling more like toes. That high feeling may need to be here as well on occasion... ha!
So, other than the dry mouth, jitters and sleeping issues, life is good. Fewer Poopcidents. I think that this Target one was the first in at least three weeks or more. I even had a beer Monday and didn’t have any bowel reactions until Tuesday. So, I can’t blame the beer for that one!
All in all, I can’t complain.
I went to the new colorectal doctor here locally. We had a very nice LONG discussion about my cancer and what lead me to go to Mayo. The question was did I know he was here. NOPE. And I was blatantly honest about why I didn’t stay local – aka I asked for a 2nd opinion and was treated like a leper and I basically left… I was never offered a more experienced surgeon here in the local area, none were mentioned and the doc I went to was an ass.
So… I like the new doctor although he told me some things that really worried me. He informed me that I had in essence two different cancers in my colon. One in the colon that was the pre-cancerous that was so VERY close to being full blown cancer and the true already formed one. The pre-cancerous one concerned him as it was one that would have spread as it wasn’t well defined and was ready to strike out to places unknown. These statements along with the concern about the polyp removed from the Cecum area make me KNOW I’m glad I did the chemo now. All problems associated with it or not.
So I am just a cancerous person… basal cell, colon, and lots of variety in the colon to boot. Odds of this are probably better than the Lottery jackpot. Yeah, not the lottery you want to hit, eh? Me either. I should be in a panic, I should be scared shitless at this point, but really? Is there anything I can DO about it now? Nope… not yet… just be vigilant and watch. Follow doctors’ orders and do as I’m told get screened when I’m told and hope for the best!
