POST #9 - Reflecting Back: My Diagnosis Story

I’m writing this on October 18, also known as Day +5 after transplant. Today is a good day and I feel in the mood to type. The past 2 days have been ok, and since today is better than yesterday, thought I'd get in some more blog fodder. I”m propped up in a recliner in my room, with my sister’s Sony Vaio laptop a buzzin’.


It’s interesting being here and learning about others with cancer. Hope Lodge, the Cancer Society owned facility where my sister is staying for these two weeks to be with me during the day, is a place of relaxation and story-learning. Family members and well as cancer patients receiving day treatments can stay in this full amenity homey lodge while visiting Hershey. My sister has met several family members of people who are having their care at Hershey. Again..no matter what happens in my life from this point forward connected to cancer or anything else, I feel so lucky, words cannot express.

The first question that people ask me when they've learned of my status, is “How did you find out that you HAD this??” (multiple myeloma). I’ve done a Cliff Notes version of unraveling my multiple myeloma story. For those of you who have heard this.. feel free to skip to Post #10.

Long ago and far away in March of 2009, I went in for a blood series with my primary care physician.. cholesterol, etc. and I was anemic. Slightly anemic. I felt absolutely fine. I was not tired, no pain, no bone aches, no nothing.

In fall of 2008 my GYN shared with me that I was just slightly anemic, “.5” below normal..I believe I was 10.5 where normal was 11 of my hemoglobin, if I recall correctly. Understandably, she was not overly concerned as tons of women can be anemic by this tiny bit. The suggested was to take an over the counter iron supplement, which I was ready to purchase after our conversation. I spoke with the pharmacist regarding the name of suggested projects, and she shared that “..are you aware that these may make you very constipated”. I thought.. OH GEEZE! It was not a welcomed state to be in for various reasons..so I said to her, “How about if, first, I’d load up on spinach and red meat and see if I could pull out of my anemic state with doing that, versus taking one of these products? So I self-decided this is what I’d do.

A few month’s passed and it was time for me to have regular blood work done for cholestral, etc. through my primary care physician. I had forgotten to have it done for a while (like, a year).. so I thought now, March, was a good time to do this, and it's how the ball got rolling.

I went to my PCP for the bloodwork. After my blood series came back “fine” except for being anemic, and I shared with him about my prior knowledge of beng anemic..he checked my counts last fall and now, I had now dropped a full point..so I believe I was at 9.5, down from 10.5. That is not normal, so I learned. “Well, your b12 and iron are fine..so something else is causing you to be anemic.” If my memory serves me correctly, it was then that I asked him what can cause anemia that could be concerning? Multiple myeloma was in the possibilities discussed, which was fine, well, fine because it was explored verbally in our conversation, it was not yet an “it” factor. I tried to wedge into the conversation that “Gee..couldn’t this anemic state just “be me”? ..or, how about that I’m probably peremenopausal? Or.. or.. or.. My PCP smiled and said, “well, anything is possible..but, “I want to investigate and vampire you a bit and do a big series”. I agreed of course. Those results came back within a week or so. I went back to his office and he had that “look”, which in 15 years of seeing him and not having any out of the ordinary issues, that “look” was a bit different. He said something like.. “there are some things present in your blood that indicate something is going on”….and as the discussion continued he said it was time to referred me to a hematologist-oncologist specialist .. and did I know any at my hospital where I worked? Well, sure. We agreed on a name and he PAGED him. I thought hmmmm.. PAGE vs. PHONE.. not good. My physician said, “I have to leave for a conference tomorrow…but I want this all buttoned up with the oncologist before I leave.” Oh geeze. Maybe I was obsessing—whatever. I believe the oncologoist prescribed yet another blood series to be conducted & turned around rapidly. Then when my oncologist delayed the start of his vacation in order to meet with me regarding his blood series results, I knew I wasn’t in Kansas any more.

I had already Googled endlessly about MM and the next few days. Multiply that by about a trillion, and that’s how much my sister was researching MM. We wisely kept my mother in the dark, as, we didn’t have face-to-face 100% confirmation yet..why pass worry that is not confirmed?

So, as I was gathering the entire scoop on MM from my oncologist, I asked my sister to join me about 20 minutes into our chat.. even though I remained calm and his words were resonating based on some of what I found through research..it was still a lot to take in. My sister took copious notes & asked questions based on what she knew through her research, which was voluminous.

As luck would have it, 8am the next day there had been a cancellation for a bone marrow biopsy and I was sliding into that vacant spot! That would be the final “confirmation” of the condition, and, would also show more. I also had a Pet Scan.. (or a bone scan? memory fade..must be my current drug load) …a painless xray of my entire body. It revealed a few small lesions in my skull..which wasn't too bad and pretty typical. At least my bones didn't look like a dalmatian.

The bone marrow biopsy was interesting. I had read up on what it was like, and it wasn’t too bad really. It was weird and uncomfortable vs. just painful. Local anesthetic injections and conducted by a physician who’s done about 10,000 of them, literally, made me feel ok.

Always inquiring about what’s going on during a procedure..[hey, when someone is sticking a needle in your bone, you're focused on every second of the experience..] ..I asked him “This procedure must be challenging when a patient is obese or morbidly obese? ”.. he almost paused and said “You have no idea”.. and went on to say that in some cases, the sample must be obtained from the breast bone.. a place of least fatty tissue.” Ugh. I was glad I've kept myself in relatively fit condition...but I suddenly I wanted to jump off that table & sprint to the fitness center.

The biopsy was conclusive. Multiple myeloma was now part of my life, but not my life.

I also learned my chromosomes were “good”. I had not at that point realized why my oncologist was so happy as he delivered that piece of news. I know now. I have the most common form of multiple myeloma. Yeah! I was prescribed three medications. (1) Dexamethazone or decadron, a steroid (2) Revlimid, or lenalidomide, a med that was found to attack MM when coupled with DEX (3) zometa, a bone builder, similar to what Sally Fields wails about on TV, boniva.. this med will be a once per month I.V. drip.

SHOCK AND AWE

I purchased DEX in our hospital pharmacy. I was informed that Revlimid would be shipped to me directly. Fine. So I had to begin taking all 3 meds on a Monday. The Thursday before that day, I had a phone call at home from a company called “Biologics”, the distributor for Celgene, the Revlimid manufacturer. A very friendly and helpful woman said to me “I understand you’re starting Revlimid soon?” I said, “Oh yes, Monday!” She continued, “We’d love to send you your prescription, however there are a number of forms to be completed and you need to take an online survey about this medication as I does have significant side effects for women who are still in their reproductive years, and it also addresses birth control.” (oh LORDY!)

So, of course, I would go ahead and do what needed to be done, surveys and all, just so I can get this med on time to start taking it! Upon me finishing the highly personal surveys, she and said, “How would you like to pay for this?” I said, well, I believe my insurance will cover it, and she then contacted my insurance co. and was told I could submit paperwork later. However, I needed the medication NOW to begin it on Monday. I said, “Just send it along to me.” She said, “We can only ship with confirmed payment. How would you like to pay for this?” I realized then it was my turn and I needed to anty up. I said, oh, ok, do you accept a personal check? Visa? She said “No personal checks. We take visa, MC, or a bank check…and, this is a very costly medication.”

Hearing that, I was envisioning maybe $1,000 thereabouts. I said, “What are we talking here for this prescription for 21 days of pills?” She replied: “$7,555.84.”

If you haven't guessed, this was the “shock and awe” part. I must have looked like one of those cartoon drawings where the eyeballs bulge out of a character's head, or what comes naturally to Jim Cary in his roles. I said, “OH!” and oddly, burst into tears. That wasn’t because I couldn’t pay for it, but it was the simple shock of it all. I had managed everything for the first week really well….though I was still on emotional Bambi legs, then, this hit. I put it on my visa card as it was the quickest and medication arrived FedEx the next day. I was at the office and someone has to sign for a FedEx package so I wrote an email to everyone in the suite stating “To All: a $7,500 medication is being delivered to me today..please sign for it & page me when it arrives”.

It took several weeks for this to be ironed out and I was thrilled when I was told Revlimid would be fully reimbursed and covered under my insurance.

I was on revlimid and DEX since April 2009 up until late August. No extraordinary side effects. Revlimid was 21 days on, 1 week off. I believe it kept my blood pressure happily low, thus, no meds needed for my hypertension—a condition for which I had been taking medication for over 10 years.

DEX, 40 mg every Monday, became predictable as far a side effects. Hyped up on Mon/Tues an difficulty sleeping, but melatonin helped. Tuesday, my face would turn red in my cheeks and I'd look oh-so fit and sunned. (sigh) but it would go away the next day. Then there was the Gain-5-lbs-in-one-day phenomenon. It'd melt off by Saturday..only to start that and the rest of the side effects again on Monday. But.. those two meds made a big difference in the numbers that were being closely monitored by my hematologist oncologist over the spring and summer.

I visited the the Hospital of the University of PA's MM program, as well as Penn State Hershey's program as potential locations for the transplant process. Both are excellent. I'm very very happy with where I am right now.

So that's how this all began for me. What a year, eh?

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