On the other side, of the "hole"......

Already, the rash is getting better! My honey is beginning not to look so red and blotchy, and the itching is  better. The half-life of the Revlimid is 3 - 4 hours; so this stuff should be out of his system between 5 p.m. and midnite. This just may be the "easiest" side-effect we've ever experienced. (And the one that's red and scratching says "Easy for you, maybe")!

We expected this expensive chemo to immediately put him in the "Donut Hole". For those of you still on private drug plans (not on Medicare Part D), it's time for a lesson known as "Donut Hole 101". After the honey met his deductible of $50.00, at the beginning of the year (it only took one of his drugs to meet this), he moved into Stage 2 where he paid co-pays of either $7.00 or $34.00 for generic drugs, and $70.00 for Brand drugs, and the drug plan paid the remainder. Once he had paid $2,840 in total drug costs for the year (this chart says $2,830), he moved to Stage 3 ......the Donut Hole (Coverage Gap is the actual name)! In the hole, Generic drugs are $14 and any Brand name drugs are at 100%. One remains in the hole until $4,550 in drug costs have been paid.

This morning, I went to the Pharmacy to retrieve one of his "Brand name prescriptions", expecting to pay almost $200.00. When the clerk asked for $9.35, I said "There must be some mistake......we should be paying full price for this". They laughingly told me they'd never had anybody complain that their drugs didn't cost enough.

What I hadn't realized was that, not only would the Revlimid put him in the donut hole.....it would push him right on through, because of the high cost! He's now in what's known as the "Catastrophic Coverage stage" (Stage 4) which makes his other drugs costs less than when he was in Stages 1 and 2. Who knew that the high cost of the drug might, in some way, turn out to be beneficial.

Things are looking up at this house......the rash and itch are better, so much so that he will be back swallowing those chemo capsules, tomorrow. Wish all his side-effects could be resolved this quickly, and hoping this is the only one that he has - from this drug!

It only took 3 doses.......

It only took three doses of the Revlimid  (lenalidomide), and my honey looks like someone that got into a bed of poison ivy! The itching started late Monday, though in typical Bob fashion, I wasn't aware of it until Tuesday morning. The rash didn't make its appearance until later Tuesday morning.

I first gave him Benadryl, and then I called the Cancer Center. His Onc. told me that the itching is "very rare" (not what I'd read, or heard, but he's the doctor, so I didn't disagree). He suggested that he'd have his nurse call our Pharmacy and order Atarax, for Bob. Atarax is an Antihistamine which is prescribed for itching, hives, allergies, insomnia (oh good....he sleeps most of the day, now), nausea, and anxiety (can I please take one!).

I picked up the prescription and gave him one. I understand why it's for itching.......when you're sleeping, you don't have a tendency to scratch!! The Atarax can also cause dizziness (and, it did), and can cause "reddening of the skin" (really don't need anymore of that!).

The rash appeared later, and by this morning, had taken up full residence in his body. The insides of his arms don't have "whelps" or "blotches", they are just one continuous big red "splotch". It's on his stomach and on his back. My concern was when his face and neck began to be covered, and when I read on one of the Myeloma websites that his throat could begin to close if the rash got that far!

Another call to the Cancer Center. Stop the Revlimid. After a couple of days, it should clear up, and when it does (did they say "when" or "if"?) start the Revlimid, again. It "should not" cause a rash the 2nd time, around. He doesn't feel good, and bless his heart, he certainly doesn't look his best - all red and blotchy. I hope it goes away soon; I know this is getting old for him.

Just hoping this drug is doing as much damage on the inside, to the cancer, as it's doing on the outside!

Swallow, but don't touch!!

On Friday, August 12, 2011 Bob's onc suggested that his next course of treatment would be Revlimid, an expensive chemo capsule. Revlimid is shipped to the home of the MM patient, from a pharmacy distribution center.

It took one week, and multiple phone calls, to get the drug approved and finally shipped. We were told that the drug, which had been prescribed by Bob's oncologist, had to be approved by Medicare, the FDA, and a group of doctors. It has been one week since his oncologist ordered this drug;  my husband has cancer and someone who has no knowledge of his health situation is making a decision about his medication! Needless to say, I forgot my "southern raising" and gave my "opinion". (And, I couldn't help but wonder what would transpire once the Obama Healthcare plan is in place.)

The package arrived, and upon opening, we read the warning at the top of the med pack: 'Caution - Chemotherapy. Handle with gloves.' So, he can ingest......he just shouldn't touch! (We don't put on gloves, but we do "dump" it onto a napkin....and he picks it up that way.)

I, very carefully, read the list of side-effects,  and couldn't help but wonder which one he'd be having! The Revlimid is taken daily in conjunction with 40 mg. of Dexamethasone, which is taken weekly. The Dex has already begun to cause swelling in his feet, and his hiccups are back. Revlimid can cause bone pain,  rash, blood clots, low white counts, low platelets, fatigue, and probably so many other things.  There have also been many articles on the possibility of  'secondary cancer', caused by Revlimid. I just don't let my mind go there! I think I finally have him convinced to tell me if he feels any changes, in his body.

We can deal with the side-effects, if the Revlimid can deal with the cancer!

Please let this stressful day, end!!!!!

This morning we visited (well, it wasn't really a visit.....it was an appointment)  with Bob's oncologist, Dr. H. And, as expected, my honey is going to have to have chemicals (chemo) again, to try and fight the enemy (cancer).

His M-Spike (Monoclonal Protein) is still at 0.3 m/dl, but for the first time, he has a lesion. Per his recent MRI, there is a "punched out" (hole) lesion of several centimeters in his left back hip. For those of you unfamiliar with the term lesion, it's explained as holes in the bones that look like lace, or swiss cheese. His last MRI was in December, when there were no lesions. The Myeloma is really waging war. He wasn't surprised, since he has been experiencing pain, in that area.

After reading the MRI, I realize that his back is in terrible shape, because of age and the cancer.  I try to refrain from so many "please be careful" admonitions......but I don't want him in a wheelchair. He's the "man"....he's always been the one to pick up the heavy stuff, so it's embarrassing for him to have me doing the heavy lifting.  

Dr. H suggested Revlimid, this time. Velcade has been successful but has caused neuropathy (terrible pain and tingling, in his feet), and because his M-Spike has already started to creep back up (after only a couple of months), it is now considered to be ineffective. Revlimid is a tablet, taken at home, 21 days with steroids (Dexamethasone).

It's known that Revlimid can cause (1) secondary cancers (2) nausea (3) kidney problems (4) blood problems. Knowing how Bob has reactions, to EVERYTHING, it scares me to death to have him swallow, anything new, or different!

Revlimid is Chemo - a tablet - but it can't be picked up with a prescription, at your local pharmacy. This afternoon the phone call came from the pharmacy, in Florida, that will ship the drug to us (after he's approved). It's a good thing that I don't have heart problems - his Velcade was $3,710, each week. This is much worse. I would really suggest the Customer Rep not start a conversation with "your cost will be $2,000, each month". (This wasn't how we intended to "spend" our retirement!)

There is "assistance" (the Chronic Disease Fund) to help defray the cost of this drug. It helps with the $2,000 tab, but immediately puts Bob in "the donut hole", so all of his other drugs will be at full cost, for the rest of this year.....and for as long as he's on this drug. We (Bob and I) have differences of opinions. I will do anything, ANYTHING, to keep him with me. Bob, on the other hand, does not want to leave me penniless. And, Celgene (drug company that makes Revlimid) gets rich!!

What a stressful day, and we only wanted to know what his M-Spike was and if he had to have more treatments!!!

Duct Tape, Scotch Tape, and Safety Pins.....

After a thunderstorm and overnight stop in Fort Payne, Alabama, we got the RV home from Virginia without incident. Well, not really........Bob had no problems, but we were trucking down the Interstate (I-20) and suddenly, we heard a terrible noise. It sounded as if the canopy had come loose (we knew that sound, since it had happened once in terrible South Dakota winds). Bob pulled onto the shoulder (I'm really not crazy about having to do that) and we both got out and checked thoroughly (okay, we thought we checked). The canopy was fine, and nothing else seemed to be out-of-place.

Back in the RV, and headed down I-20, the noise started again. I began searching, and finally stood up and looked down (out my window). It looked as if the front panel, over the right front tire, was going to start on a trip of its own! Now, anyone that knows me, knows I didn't calmy say "the right front panel is coming off"! (Yes, I was very animated.) Bob pulled off the Interstate, at the next exit. (Thankfully, it was an exit with a Truck Stop.) After examination, Bob discovered that the screws were coming out of the panel. We dug through the tools that we had on board, and finding nothing to fix the problem, decided that the Truck Stop might have something more. (There were lots of "No, Sarah, that won't do!) After several minutes, my honey returned with the magic "Fix All" (Duct Tape). After a few minutes, and all taped up, we were ready to go. Now, didn't we just look like the Rednecks on Vacation!!

We arrived home, without further incident. What's a trip, without a little excitement!!

We had to get back home because it was time to check and see what the Myeloma was doing!  On Monday, we went to the Cancer Center so they could get vials of my honey's blood.  After the "blood-letting" we toured all the RV Campgrounds, on the beautiful Mississippi Gulf Coast. It's time to camp closer to home, in the event my honey has to get back to to his doctor.  We never know which side-effect he's going to have, next! I did suggest to him; if I completely lose my mind, or get eaten by a big dog, DO NOT allow anyone to change any of his medications, period!

After a long day of touring, we finally decided on a spot in an RV park on the Back Bay of Biloxi. We'll be able to dip our line into the water, and we're minutes from the beautiful beaches of Mississippi. It reminded us both, of happier times (before cancer), when we camped with dear friends, in Florida.

And yes, he did remove the duct tape....and the panel is fixed! And, for the record, I'm putting safety pins and scotch tape in the tool box.

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 sample....it 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 .....you'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.....

You want me to do what?????

Just exactly two weeks from the day we left home, we returned home. What?? Weren't you planning on staying a month?? Yes, in fact, we were.

I think my honey thought this trip would be magic. We'd take off in this rolling hotel (RV) of ours, with him at the helm (most of the time, I drive .....the car), we'd stop along the way at Rest Areas, and have breakfast or lunch.......just like we used to do.......before cancer.

He got tired, as we loaded, but I thought nothing of it. I got tired, too. He said he felt okay, and he seemed okay....and silly me....I listened, and I believed.

So, on Thursday morning  - just two weeks ago - on the road we went. He seemed okay. He looked okay. He even acted okay. The man shoulda' been an actor!

We finally arrived at our campground, near Hillsville, VA on Saturday about noon. He seemed okay. He looked okay. He acted okay.

He was tired, and he rested, and I thought nothing of it. After all, Myeloma causes fatigue, and weakness, and so many other things. And, it had been a long trip, and I was tired.

One week from the day we left home, we went on our first excursion up in the mountains. (That really was a clue that things weren't as good as he was pretending.) We didn't go to the Blue Ridge Mountains, which were to our East and South......but to the Appalachian Mountains which were back to our West. I drove. Because he tires easily, it was really just a road trip and a visual experience. We never were into hiking, so not being able to climb the mountain didn't bother me. After all, I have an excellent Treadmill, in my bedroom, and it's such a great place to hang clothes and is in air conditioning, why get all hot and sweaty, outside!

For the next few days, he sat and rested....or slept on the sofa, in the RV. And, he started doing something that he hadn't been doing. He began to ask for a pain pill when he first got up, in the morning. He finally quit, as our friends like to say, "putting on a front" and began to admit that he wasn't feeling good - and really hadn't felt good for some time (even before we left home).

I began to ask "do we need to go home, while you can still drive this thing?" (I drive cars....not RVs). So finally, on Wednesday (just one day shy of two weeks from when we left home), my honey decided that we needed to head home - so he could get back to his doctor. And, because he really was no longer able to drive the RV......bless his heart....it's still on vacation, in VA!

Was I upset? Yes, a little. But, I realized that this was something he was trying to do for me. He wanted things to be as they were ....... before cancer. But our life has changed.......nothing is the same.

We have taken three vacations in the past year. The first vacation, he got sick and we came home to a diagnosis of Multiple Myeloma. The second vacation, he got sick and we came home to see the doctor. This was the third vacation, and he got sick and had to come back to the doctor.

Please, please, please don't mention the words trip, or vacation, to me.......I'm just not sure how I might react. You know what they say, "All's well that ends well"....well, so far, these vacations haven't ended too well.