Monday, February 04, 2013

February already?

I never realize just how long it's been since I've last posted, until I finally get into Blogger to do it and see the date of my last post.  I certainly hope nobody has been holding their breath waiting for me; if you have, my apologies and condolences to your loved ones.  Throughout the week I have lots of ideas in my head that I'd like to commit to the screen, but my general sense of inertia keeps me from getting into it.

Medical update first:  I had scans in December, and they showed a terrific response to Inlyta.  Everything that had blown up in the last scan was back down to the sizes they were before.  What a complete relief that was, to know that I can keep on this path for now and not worry about what treatment might be next.  I've "graduated" to seeing Dr. Rini every 6 weeks now instead of every 4, and having scans after 12 weeks instead of 8.  And, when I have my next scans next month, we're skipping the chest CT for now, instead just having the MRIs of the abdomen and pelvis.  He feels that we're not getting any information from the chest CT; all of the changes in mets and sizes of mets are in my liver and pelvis.  I could feel nervous that we're not doing the CT, but instead I agree that it's a good thing to do.  That's one less dose of radiation for now; if I develop any symptoms or issues, he will have me scanned at that point.  It's just too bad that it's the quick test that is being tossed; the MRIs are together but I am in there a long time.  When I had my first MRI in 2005 I prayed I would never have to have another... ha ha on me.  I've gotten used to them, learning first to keep my eyes closed, then to find things to recite or think about to keep me focused away from the machine.  It's helped that I go to the same place every time, and they have a machine with a wider opening, which keeps the claustrophobia at bay.  Really the only annoyance now is that I have to do a number of breath holds during the test, so that means I can't fall asleep in the tube.  Long ago Jim told me that he found it easy to fall asleep in the tube and I was incredulous.  Now I totally understand and wish I could too.  But it's a small price to pay to get the information we need for my treatment.

The larger price has come in the form of more side effects, now that I've been on treatment for about four months. (TMI warning)  I have had a lot of trouble with diarrhea for the last several weeks.  I had some issue with it when I was on Sutent but this time it's been much worse.  Dr. Rini suggested taking Immodium (or whatever generic equivalent I've picked up at the store) first thing in the morning, rather than waiting until after I have had a bout.  This seems to be helping to lessen it a fair amount.  There is lots of anecdotal information online about the digestive benefits of eating coconut or drinking coconut water.  I bought some shredded coconut and while I haven't been eating it as regularly as I should, I have been eating some.  It's not bad in yogurt; I've added coconut, some pineapple and a bit of honey to plain yogurt and that's been pretty good.  I had a good simple macaroon recipe but somehow it has disappeared from my recipe box; so I need to find it or another one like it.  Then I will need to lock up the macaroons so that my girls don't eat them all.

Unfortunately even eating macaroons is a mixed bag for me these days, as my mouth sensitivity is as bad as I ever remember it being on Sutent.  My sense of taste is definitely altered and anything with any amount of spice is uncomfortable to eat, usually painful.  I have a sore on my tongue which is very annoying, and the back of my throat is sore.  This means I have to be careful to eat small bites and chew really well to avoid pain when I swallow.  Anything dry is difficult to eat.  On the one hand, this is good news for my dieting life, as I need to re-join Weight Watchers for a session of 12 weeks (or 13 - I don't remember the exact amount) as part of my employer's health insurance premium incentive program.  Since I made it to my goal last year, I want to keep doing so.  It's been nice to have clothes fit better than they used to.  Interestingly, the last time I lost this much weight I got a lot of comments from people I know, noting the loss, etc.  This time nobody has said anything.  It could be that it's not that noticeable, though Jim and the girls all think it is.  It occurred to me that it might be that people are afraid to comment, that they may think the weight loss is a sign of me 'wasting away'.  The lack of comments doesn't bother me; I just found it interesting.

In better news, the leg pain that I suffered with throughout the autumn is gone now.  I believe it was an effect of how badly hypothyroid I was.  Once I'd had the higher dose of synthroid for a few weeks, my legs began to feel better, and continued to improve.  Since October, my TSH number has gone from 36.67 to 16.75, to 5.77,  The standard range for it is 0.400 - 5.50 so I am almost back in normal range.

Now for an update on Jim, as I have left the blog hanging as to his medical status.  He did go for a physical therapy session, which ended up being rather pointless.  The PT had him try various exercises, but when he would experience pain, she would have him stop and try something else.  She eventually decided that what might help him was the use of a TENS unit.  Jim is familiar with TENS, having worn a unit daily for several years after his hip injury in 1995 until he had that surgically corrected in 2001.  She put the electrodes on him for a bit; he said it felt better while it was on, but he couldn't see having more visits just to be hooked up to it.  Good thing - in spite of not recalling receiving a bill for this appointment, he recently received a collection notice.  We looked at our insurance paperwork and found that our health plan doesn't cover "electric stimulation".  He has made some calls about this, as it wasn't a treatment he asked for, and since he was at a Cleveland Clinic facility, he assumed that the PT would know that it wasn't covered for people on the CC employee health plan.  Oy.

His last MRI showed that his disk did move back into place quite nicely; his back stopped hurting after a time.  He has narrowing of the channel at the bottom of the spine, which is apparently what has caused him to cotinue to have pain starting in his glutes and running down his legs.  This pain definitely started after his second spine injection, so while the narrowing was a pre-existing condition, I believe that something in how that injection was done pushed or moved something so that this area "lit up" for him.  So frustrating.

Fortunately he has been keeping himself moving, and working on losing weight, and has found that his pain has continued to decrease.  He had been told with time and exercise he could improve, though it could take a year or more.  Well, around the first of the year he decided that his pain was no longer bad enough to take ibuprofen for.  In the latter part of 2012 he was taking a LOT of ibuprofen, which of course creates its own concerns, but it was the only thing that was helping him.  As of this weekend, he told me that he hasn't taken it once, that the pain has been bearable.  He's also stopped using his cane.  I was so heartbroken to think of him perhaps always needing the cane, so I've been thrilled for him that he's not needing it.  

I'd like to post more, about the girls, life here, etc. but fatigue is setting in.  I am going to try very hard to get back to the keyboard soon however.  Writing these posts is good for me, so I need to keep at it.  Maybe one of these days some humor will creep back in.  Stranger things have happened...

3 comments:

Julia said...

Still crossing my fingers here for a continued long, long, long tumor growth cycle... I am thrilled to hear about your great response to treatment (although the side effects sound less than fun). It's great that Jim is better, too. Here's wishing you the very best--looking forward to hearing more about the girls!
Julia
(OMOM from way back)

Sarah Yule said...

Although I wish it were under different circumstances I enjoy reading your blog, I a Mum like you & also on Inlyta who also keeps a blog whom much like you goes back to it every now & then but find it helps too.
Stay strong.
Sarah Yule
UK

Dena said...

Thinking of you always! Hope the side effects become more manageable!

Love, The Battles