Saturday, July 30, 2011

Side-effects, again.....

I ended my last blog with "don't mention trip or vacation, to me", and here I am, on the road again! And no, I'm not alone....this honey of mine, that has MM, is along (and he's even doing some of the driving!)

My cousin, Howard, who died from Colon Cancer almost 4 years ago, used to say "I ain't sick, I just got cancer". (Now, Howard was well-educated, but he loved using his southern slang to make more of an impression.) For the past few months, my honey HAS been sick (and he also has cancer). He's been nauseous, couldn't eat (and no, it WAS NOT my cooking!), and has been like someone with the flu - except no cough, cold, temp, etc.

Thankfully, I keep detailed notes, calendars, medical logs, notebooks, etc., ad nauseum! (guess it comes from my many years as a consultant).  First, we went to see the wonderful Dr. H (Bob's oncologist), and learned that it probably wasn't the cancer. (Whew!!)

On Monday, we went to see his PCP, who really looked completely disinterested at the whole situation. Bob explained what was going on (with a "few" interruptions from me.) Having referred to my trusty records, I asked if he would put my honey back on his "old" (took it for 7 years without incident) Blood Pressure medication. Humana had taken his medication off their Formulary (would not pay for it), so in May a new BP med had been prescribed.  I had done some research (I could almost hear the doctor groan), and the "possible" side-effects were exactly what Bob was experiencing. (I'm still considering renting him out as a "side-effects tester".) He agreed, but obviously thought I was wrong, because he suggested it was Bob's gallbladder, and that he should see a surgeon. He also had Bob leave a urine specimen. (Note: Other than getting him back on the BP med, and the urine was a waste of time, and $$)
So, on Tuesday, off we go to see the surgeon. In March, Bob had a colonoscopy, endoscopy and Hidascan (gallbladder). This surgeon had visited him in the hospital when he was experiencing, as we later learned, side-effects (there's that word, again) of Celebrex. Bob's gallbladder wasn't "emptying properly", but he didn't think that was the problem, then (or now). His exact words "I can remove it, but it probably won't fix the problem'll probably still be nauseated." (Oh good, that's just what we wanted to hear.) He suggested that Bob see a Gastrointerologist, because there are "many things" (his words) that can cause nausea. When I asked "Such as?", he said "The Gastroenterologist will tell you." (Hidden answer....."I don't know") (Note: Another waste of time....and $$)

The Gastrointerologist doesn't have an appointment available until the end of August. He's sick! He's losing weight! He's nauseous! He can't eat! Are you kidding me?

My honey was feeling terrible, he was weak, and his eyes were even beginning to have that "vacant" look. He would get up in the morning, and when he got to the sofa he would lie down and go back to sleep. I was researching everywhere, and corresponding with another caregiver (in Iowa) who had some wonderful ideas, info, and suggestions. What would I do without this MM community? I was frustrated, concerned, and frightened. This was beginning to remind me of those days, before we got a MM diagnosis; when he was so sick, and I didn't know what was wrong. 

I tried to get an appointment with a Nephrologist, but learned that he needs a referral (understandable), and doesn't meet their criteria. (And, that's a good thing.....probably isn't his kidneys causing the problem).  His  GFR isn't what it should be but that, alone, doesn't mean kidney issues.

So, on Tuesday night, my honey started back on his "old" BP medication. On Wednesday, there was no instant miracle. On Thursday, he began to be a little better. Friday, he was "more" better, and Saturday morning (today), he woke up, raring to go!! 

And, this time, I said "Let's go get the RV!" It was almost as if I'd give him a shot of adrenaline. I could see it on his face....the "she knows I feel good" smile. And, before I knew, it he was taking his shower, packing his clothes and getting ready to go. Hence the reason we're on the road!

He's no longer as nauseous,his appetite is back, he's beginning to feel good.  Will this happen, again? Most certainly. Somewhere down the line, something new will be prescribed, and we'll go through another episode. It's frustrating, irritating, frightening, all of these adjective, and more, but as long as it isn't the cancer, we can deal with it, if we know what "it" is.

Strange, how something as simple as Blood Pressure medication can potentially be an issue. We see the advertisements on television, everyday, of the possible side-effects of various drugs. Bob's cancer (and his sensitive digestive system) has taught me to be very cautious, and aware, of the potential danger of every drug. At the time his Blood Pressure medication was changed I voiced my opposition, and concern, and deaf ears were turned - so I'm not saying "I told you so!" (Oh heck, yes I am!!)

My honey is feeling better - he's eating, he's not nauseous....and that's what's important. Thankfully, it isn't always the cancer......maybe it's just the side-effects, of something else.....


  1. Oh the joy! What fabulous news, Sarah. Enjoy the journey with your guy.

  2. Dianne: Have to enjoy every one of these feel good days!

  3. Oh thank goodness! So sorry for being shuffled about though! One of the things about MM, and I suppose other cancers or illnesses as well, is you don't know what's causing what and the fear of it all can make us crazy!

    I remember Dave doubled over with stomach pain like crazy, early on in our treatment, demanding I call at all hours of midnight the docs in Little Rock, then the local doc, all perplexed and saying to go to the ER. Oh joy. I was sure it wasn't the cancer and yet Dave wouldn't listen to any of my advice. We go to the local ER and sure enough it was an antibiotic a local doc had put him on. So there we sat in the ER, 3 AM, Dave has been given something to calm the stomach, under a nice blankey sleeping and I'm in a hard chair freezing my butt off. Boy I was pissed off. :) haha But also relieved that the ER doc was actually excellent, sorted it all out in quick order and we were able to get on with it.

    I'm so glad you guys are back on the road again!

  4. Wow - thank goodness you were paying attention to every detail!!!! Love you guys soooo much!!!!

  5. oh, sarah, i am sooooo relieved for you and bob, and thrilled that life has taken on a new shine - on the road again - isn't that a song? i'll sing it to you in my heart, a catchy anthem for the days ahead.

    by the way, this is karen. i have what might be a helpful hint for any others who are facing changes in BP medication. our insurance nixed the one hugh was on - it's avapro. i was beside myself, being a nurse and having seen sooooo many horrific problems patients endured with certain of these meds. avapro had absolutely no side effects for hugh, and with 2 SCTs within 6 mos., i did not want him to have to endure anything more nasty than necessary. but the price out of pocket was astronomical. what to do? i found out some meds can be cut in half (many cannot - especially time released ones), but avapro is on the approved list for 1/2'ing. so we had hugh's doc prescribe 300 mg, which when halved, equalled hugh's daily dose of 150 mg. (we also informed the doc of the whys, and wherefores and he gave us the go ahead, saying it would be fine) thus, the prescription for 300 mg pills lasts twice as long and don't cost any more that the 300 mg. pills. but PLEASE,everyone reading this, always check with the pharmacist and doctor on what is safe to cut in half. it's been a real help with saving $$, but you have to ferret out the info - no one ever tells you - especially the insurance companies!!! if only the people that are making these decisions could see first hand how devastating the cost in patient' well-being, as well as the how much all those specialists cost in health care $$$'s, and all the time, horrible worry, and life-altering side effects like you and bob had to endure. don't you wish you could bill them for YOUR tme??? anyway, bob is so fortunate to have you to keep such meticulous records and have such superior instincts.

    now you can relax and enjoy, and i am so thrilled for you both. thanks so much for sharing this saga - i bet it will really help a lot of other MMer's and CG's. warm hugs - karen

  6. hi sarah - a big, "oops" where i wrote the"... 300 mg pills last twice as long and don't cost any more than...", it should say "...don't cost any more than the 150 mg pills". i read and re-read - still...sigh. love, karen

  7. So glad Bob is feeling better thanks to you tracking down potential reasons. :D

  8. GREAT job!!! I've had this happen myself where docs told me it was not a med causing something and it was. I've said it before, Tim's doc knows more about MM than I will ever know, but I know my husband better than he does. I had a 22 year head start in that dept. and Tim is my only "patient." After a few times of being right and catching things they missed, they have learned to listen to me now.
    Have a wonderful trip!