Tuesday, March 27, 2012

Life with Afinitor - and other medical odysseys

Today I took the last pill of my first first four-week cycle of Afinitor.  I will start the second cycle tomorrow, and at the end of that four weeks, I'll have scans to see what it's doing to the cancer.

So far the side effects from the new drug have been milder than what I experienced on Sutent.  I have some mouth sensitivity, but it's really minor.  Nausea has popped up several times; usually nibbling on something helps to get rid of it though one evening I did end up taking Compazine so that I could just go to sleep.  I was given prescriptions for Compazine for night use and Zofran for day use.  I'm happy that I haven't needed to take them more so far, but I won't try to be a hero if I feel really sick.  It's just not worth it.

I also have experienced some rash on one lower leg; it will itch like crazy for a bit each day.  Good lotions have helped a lot; the itch can be annoying at times but it hasn't been severe at all.  All in all, not a bad experience so far.  A little voice in my head worries that the lack of side effects could be indicative of Afinitor not working for me.  The rational voice in my head is louder, however, and reminds me that some people experience very few side effects while still having a great response, and that I'm still in early days on this treatment.

The main effect for me has been fatigue.  It's not a feeling of sleepiness per se, but a lack of will to get up and move to get things done.  Afinitor may not be wholly or even partly to blame however, because my hemoglobin and associated counts have been declining over the past several weeks.  My oncology team is watching them closely; Dr. Rini told me that if they get too low, I might need a blood transfusion.  I find myself at the end of the day kind of collapsing, knowing that I need to do chores, or balance the checkbook, or even write on my blog, but I often don't feel like doing anything that requires effort.  Instead I just play around on Facebook or read funny tweets to Jim.  Lovely pastimes, but it feels like being in a bit of a rut.

Someone recently observed that he has noticed a difference in my spirit since I got the news that Sutent had failed.  According to him, I seemed like I'd kind of had the wind knocked out of me, and that I didn't express the same positive attitude that I usually display to people.  I think he's right.  Even though I don't consciously think about it much, I know that failing on one drug and having to move to another is scary.  I definitely felt my mortality more concretely, even though I'm certainly nowhere near being terminal.  But the feeling of being out of control of something going on in my body, something that could kill me, is really scary.  Sometimes I think that my positive attitude and the way I try to downplay my cancer in my interactions with people around me are a way of maintaining a sense of denial about the possibility of dying in the near future.  The thing is, my tumor load is really pretty small, and the tumors themselves don't affect me physically.  If it wasn't for side effects of treatment, I wouldn't "feel" like a cancer patient at all.  I don't like thinking that I might leave this life before doing more of the things I want to do.  And when I think about how young my girls are, I really get upset.

It's been a crazy past couple of months for other reasons, too.  In late January Jim slipped on a patch of ice in our driveway and fell, landing on his side.  He was sore, but seemed to get better over the next several days.  About a week later he went for some dental work for which he needed to be given nitrous oxide, for longer than he's usually had it.  The next day, he started experiencing severe hip pain.  He saw someone at our regular doctor's office, who ordered an xray.  Before he got the results of that, he felt worse, so I took him to the emergency room where they did another xray and said nothing appeared to be broken.  Since then, he's had constant pain, running down the backs of both legs.  He did some online research and thought that he might have had a reaction to the nitrous oxide, but this doesn't appear to be the case.  Our doctor referred him to a rheumatologist, who gave him a week long dose of steroids.  The first couple of days were great; he felt much better.  But he had to taper down the dose after that and his pain increased as the drug level decreased.  Last week she ordered an MRI for him... finally... for this week.  However, he was in so much pain that he called her and she gave him another prescription for steroids.  On Saturday he started feeling numbness in his leg and foot, which understandably scared him, so back to the emergency room we went.  That turned out to be another waste of time (and co-pay).  We were told that the hospital we were at doesn't staff the MRI on the weekends; if a case is emergent they call techs in to do the testing.  But Jim didn't meet the qualifications for emergent, despite his pain level being at around a 9 and keeping him from doing anything other than laying or sitting, trying to find positions that eased the pain.  The hospitalist who works with our doctors said he could be admitted overnight but the only thing they could do for him was try to manage his pain, so he would likely be discharged on Sunday morning.  This wasn't going to really help the total picture, so we opted to go home, with a prescription for Percocet, which has helped take the edge off Jim's pain but by no means has allowed him to resume daily activities.  The folks themselves at the ER were really wonderful though.  They felt that Jim's issue is likely orthopedic - perhaps a nerve impingement - which is the same idea his rheumatologist expressed last week.

His MRI was scheduled for this morning, so now we're waiting for results.  He had a weeks' long wait to see the rheumatologist despite having a referral from his primary doc, and so he and I have both been beyond concerned about how long it might take to see an orthopedist.  Yesterday morning I sent an email to both our primary doc and the rheum doc, letting them know what happened over the weekend.  This constant pain is depressing for Jim, as is not being able to contribute to our daily activities and having me do things he normally does.  I expressed that in the email, and asked the docs to PLEASE try to get him in with the right doctor as soon as possible based on the MRI results.  Our primary doc replied within two minutes!  He said that he would facilitate getting Jim in to see a back specialist within a day or two as long as the MRI results indicated that was the right direction.  So if you are the praying type, please send some prayers, otherwise put out some positive vibes that the MRI shows something fixable so that Jim can get back to being himself.  It breaks my heart and the girls' hearts to see him suffer.

Interestingly, my energy level has been better over the past several days.  It could be because my body realizes that I need to "step up to the plate" right now, or maybe my blood levels are improving.  I hope it's the latter, and will find out tomorrow when I see my onc team for my regular check-in.

Now, this drama isn't enough for our family... not at all.  On Sunday I was letting our dogs out the back door into the yard.  As Scooter trotted away, I noticed that his, er, behind-type area didn't look right.  A closer look when he came back in led me to think that he has an infected anal gland.  I took him to the vet yesterday afternoon to confirm this.  The vet took him into the back room for a rectal exam and I have to say, that dog is really quite a wonderful little guy.  He came back to Caroline and me as happy as ever, and when the vet returned to the room, Scooter was wildly happy to see him again.  If you had your butt poked at, would you be enthusiastically greeting the poke-er?  I wouldn't!  Anyhow, our vet's news was not what I wanted to hear.  He aspirated a bit of the lump and found that it was solid, so he's calling it a mass.  Not a cyst, not just a swollen gland.  He told us that these masses are not uncommon and are almost always benign, but that the mass definitely needs to be removed.  So on Friday Scooter goes under the knife, and will probably have to wear a Cone of Shame for a few days.  I am not even allowing myself to entertain the possibility of this tumor not being benign.  I have had three dogs with cancer in the past 20 years and really had hoped that was my limit.  I do think this will be fine, but will feel much better when I receive a good pathology report from the vet.  The girls are surprisingly okay about the surgery, mostly because he won't have to stay at the vet overnight, and also because a dog wearing a CoS is kind of funny in a sad sort of way.  I'm sure Scooter will receive a lot of TLC this weekend, especially from his BFF Rebecca.

For my next post I need to think up something funny/positive/not cancer-related to write about!


clarkette said...

You are a gifted writer Liz. I go from crying to laughing reading your updates. The part about your dog greeting the vet after being "examined" made me laugh out loud to the point where John was asking me what was so funny. I know you are feeling better so hopefully it won't come to it, but I am O-negative which I think is the universal donor and I would be happy to donate. Beyond that, I will keep praying for great results for you after this round and for Jim to get some relief....and for your doggy too.

Anjeanette said...

Oy! I don't really know what to say. Hugs to you and your family. Thanks for sharing. I will keep you and your family in my thoughts.