Saturday, October 31, 2009

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. 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 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 I believe I was at 9.5, down from 10.5. That is not normal, so I learned. “Well, your b12 and iron are 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 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.


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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Friday, October 30, 2009

POST #8 - Let the Games Begin

Today is Wednesday October 14. Even though this Posting on my blog will appear much later, I wanted to capture my experience before it faded. This Posting is about my first 3 days at Penn State Hershey Medical Center, of my two-week stay, including chemo and transplant.

I was all set for my Monday October 12 trip to Hershey, or so I thought. I woke up at 3am Monday morning with a migraine-level headache of a LIFEtime. My conclusion was, perhaps pent up stress and anxiety had arrived and packaged itself in the form of a headache that included being physically ill, if you get my drift. All I knew was I was in 100% agony on my Important Day. Hershey called with the preferred estimated time of arrival & we agreed on “before noon”. I shared that I was suffering with a wicked headache and was told nicely “well, we have wonderful drugs here that can help”. That was the only smile I managed that morning—I was determined to get to Hershey in record time.

So, there was my sister, driving me to Hershey in her red PT Cruiser, I was sitting in the passenger seat with my red & black scarf pulled over my face to keep the sunlight out. For anyone peering the window as they drove by, it looked like some wacky kidnapping. We arrived, and were told beforehand to walk right upstairs to the unit without need to stop at the main desk. As my sister did the valet parking thing, I waited inside main entrance doors, standing by the beautiful new hospital map, with my head in my hand, obviously in pain & probably downright scary looking. I was now a patient in pain. People were staring at me. I could care less. As we approached the elevator tower, I was losing ground—I HAD to get up to that 6th floor for the DRUGS or I’d know the reason why. Just like in an annoying scene from a movie or TV show, the elevator took forEVER, then finally we entered one of the three that was finally free, and four other people had to re-open the doors to hop on. I tried to say calm, thinking.. “hmm..they too have somewhere to go, to heal the sick.” Then, a final person had to also enter our elevator pushing a huge cart of equipment. I said out loud: “I’m not moving” and if my lip curled, it did then. The cart-pusher did end up wedging it on our elevator though, and we ascended, stopping at every blasted floor. Jesus. Just get me up there, please.

So, on the 6th floor we walked down a long hallway,and around the corner was the Cancer Institute unit behind double doors. We were met outside the doors by a nurse holding a chart and she said “Are you here for room 6127?” I said, ”I’m not sure about that, but I’m Jody Millard, I’m here for the next two weeks – TAKE me.”

As I got acclimated to my room, imitrex was ordered, but was slow coming up from the pharmacy. I had already been ill repeatedly that morning and I was certain that pattern would continue. My physician and others came by shortly after my arrival and we discussed the headache. He ordered dilaudid, an opoid. Yep, not-your-father's-painkiller shall we say, as it was a bit higher than morphine (or, was that me?) Anyway, I must have really indicated how much pain I was in.. and, he was concerned. As it flowed into my catheter I felt a woozy rush and my headache went away in what seemed like 90 seconds. LOVE IT! Even though it did make me ill, it was not a big deal. I HAD NO PAIN.

So, I began to receive my medications prior to chemo, more anti-nausea meds. I was already in a nice woozy state so I welcomed anything into that catheter, bring it on! Chemo started at 5pm. Thirty minutes prior, I had to chew on crushed ice. This I’m told would decrease the percentage of the severity of mouth sores from 75% to 25% in about a week or so from now. Oh goody. My mouth was numb by the time the chemo started, so, even though the chemo was strong—with all the prior medication-- it was manageable. My episodes of illness (aka vomiting) weren’t bad. Actually, it’s unlike being ill from a virus or food poisoning, . It comes upon you rapidly, it “happens”, then, it’s over. So, my day had about a dozen “episodes” pink basin and I were friends by then, but I bid him farewell by evening. Little did I know I'd be marrying that basin, or so it would feel, in the next 13 days.

I didn’t sleep at all on Monday night, but oddly, I felt ok. Having never stayed in a hospital overnight before in my life, this was baptism by fire. Overnight due to cancer, not a broken limb or some other thing. But—the overnighting experience was fine. The sleep loss was probably due to steroids.

While awake, I thought about writing this posting. I thought about changing my furniture around in my home to accommodate my new flat screen TV. I thought about redecorating other peoples houses. I thought about work and was going on. I thought about my cat being tenderly cared for by friends, I thought about how great it was that I was here and everyone knew what was going to happen next. I thought about how lucky I was.

Tuesday (called Day 0 in Transplant Land) was the day that my stem cells would be infused into me. So the troops entered the room at about 11am. The person from the blood bank wheeled in a dry-iced container with my stem cells in 2 bags. A triangle of conversation took place to triple-check the accuracy that my cells matched me, each person read my wristband/label on cells/label on order which was most all reassuring. They were indeed MY cells, the same ones I had spent 10 hours “giving” at Hershey just 3 weeks prior . The nurse practitioner actually did the infusion directly into my catheter with my physician present and a second nurse standing by and my sister as my guard.

The infusion was another weird experience, but again, manageable.

Because my stem cell collection was “good”, I only had two large syringes of stem cells destined for me, about 2 million cells. The team shared that sometimes an infusion requires 15 or 20 syringes for one patient, based in part on how well the collection had gone or if ones' stem cells were not strong due to prior chemo or other reasons—more vials are needed for the same final count.

Anyway, these were thick sausage-wide syringes. Eeeew. The Nurse Practioner began the process and I was forewarned about experiencing things like nausea, shortness of breath, feeling overheated, etc. As she pressed my cells into my catheter, I instantly felt like a low ember fire was making its way through my body. At first it was heat, then, it was more like a peppery feeling in the back of my throat. It felt like someone put a bit of lite Tabasco sauce or pepper in my throat and I needed to cough for no real reason as nothing was actually there of course. It wasn’t comfortable. The idea of having 20 syringes would be quite a challenge, but of course I’d endure it if that was what was needed. I’m grateful that it was just two. I had been told there’d be an aroma of creamed corn, something I never did end up sensing...but others could. My sister confirmed even hours afterwards that yes, it was in my room wafting around. Never knew it. For about 20 minutes, I had 10 eyeballs (though very friendly eyeballs) staring at me in silence as the NP was infusing me, which added curiously to the experience . In hindsight, the eyes made it more comfortable as they were all focused on me.

The infusion ended. I felt unsettled the rest of the day on Tuesday, no other way to describe it. I needed anti-nausea medication to enable me to sleep and I did so.

Wednesday “Day +1” (the day I’m writing this, Oct. 14) .. has been terrific! I feel super! I can eat (a little) and my sister and I did two 20 minute walking laps around the unit. It felt great to be out and about, even if it wasn’t far from my room, it was great.

My infusion NP stopped by and updated me with detail about “what’s next”. That was a boatload of information that was a bit new. I learned today that about 6 days from now, my white blood count will be dropping and it’ll drop to it’s lowest point. My numbers will be bottoming out , though with my stem cells, they’re fighting for me at the same time. I’ll be most susceptible to infection and from then, all will start to rise. Interventions may include continued need for acid reduction for my esophagus (as chemo weakens cells that reproduce the fastest: mouth, esophagus, mucus membrane areas) , neupogen to build blood cells, and possible blood transfusions. It is expected that I may get some kind of infection and then I’d have chest xrays, maybe a CTscan to find out what’s going on.

This concludes my update on my first 3 days. Chemo and transplant are now officially “history”. More stuff to come behind the remainder of my stay, but I'm game. Life is bettering!

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Sunday, October 11, 2009

POST #7 - Almost There!!

Today is Sunday October 11. A little gap in time since my last posting on my blog. I can't believe it has been over five weeks since my world shifted off it's axis, beginning a new rotation through November. Coming in on the home stretch, my “transplant” which technically is a rescue from chemo, is now tomorrow.

I'm used to my no-hair look. It certainly shortens the primping phase of my morning. It's been fun to experiment with various scarves and such, as demonstrated below. Turbans sort of make me look like Ethel Mertz. Found some great accessories online as well.

My skin near my catheter insertion area has healed and now, it's part of me (sigh). Word is, it can be removed at the end of October. But, it has One More Big Important Job to do before then.

This past week had been much the same as the one before: Monday and Thursday visits to Hershey for an in-the-catheter syringe of another chemotherapy medication used for multiple myeloma, Velcade. To me, the name Velcade sounds so crisp & slick, compared to the 100s of meds that end in an “ox-an” or an “an-ide” or a “gen”. Velcade sounds like an adventure.. I picture some red sports car screeching to a hault and this attractive sunglassed guy jumps out, scoping out the area, looking for a crime to solve, and the harmonizing group wails.. “Vel - Caaaaade!”

Ok, maybe the steroids are eating my brain. Who knows. My double dose of dexamethazone for the past two weeks has kept me fairly hyped up, which meant some significant sleep loss. I had mild tingling from Velcade in my feet on one evening and some leg swelling but fortunately it all subsided. When your scope in life is narrowed and focused as mine is now...everything in front my lens is magnified: how I feel, who's walking down the street, what's in that drawer over there across the room that should be thrown out. To me, everything is of interest. Nothing is boring. What ever is caught under my newly focused lens quickly gets dissected on a glass slide. Knowledge and information is true power and (for me) and it's extremely comforting.

I've read glossaries of medical terminology trying to memorize terms and creating my own mental quizzes. Holy crap. (of course..I'm not going to reveal how well I do..). But, it's fun. I watched a 55 minute online video conference featuring two physicians discussing current protocol for multiple myeloma treatment. Most of the content wasn't new to me, but a few points were more detailed and helpful. More information, more comfort.

There is a saturation point, even for me. I've read numerous blogs of patients with MM whose stories are soberingly different from mine. Many of the stories have been concerning, disturbing and not optimistic. I can understand this, for if I scan through my electronically bookmarked collection of clinical academic journals of MM studies up to 2005, it's kinda bleak.

However, since 2007, from a medical research perspective, outcomes are much more encouraging. Living in this country is a huge plus as well, versus other nations with health care systems heralded as efficient and cost effective, but not by what I have viewed on YouTube. I have seen one too many videos of MM patients who've opted to chronicle their own care story online vs a blog. I've heard and seen their frustration in waiting six months for basic lab results and were unable to start any form of MM medications for 14 months because of inconceivable access problems and medication costs. I'd rather not even continue with what else I viewed.

I realize I'm only five months into this gig. I admit, I was in freak mode early on, trust me. And I still do go there still, but I don't stay there..I just visit. It's human nature.

Multiple myeloma is currently an incurable cancer of the blood plasma. GOT it.

Incurable is a curious word.

I have had time to do a lot of reflecting these past weeks about my current situation, my life, the lives of others. I have come to realize that many people have incurable things in their lives, and these things have absolutely nothing to do with one's physical health.

I wonder, perhaps I'm the lucky one.

At the risk of getting too much inside myself, I believe from the deepest part of my soul that multiple things are at play here, and I'm not just talking myeloma. Each of us has a plan in life. We are each fully able to be 100% engaged drivers of our own plan. Bottom line, our plan is a blend of who we genetically are, what we learn and experience in life, and what we decide to do with this combined “it” as we continually redefine who we are as a person.

Then, one day, something may interject itself into our life plan that is unexpected. It could be something absolutely wonderful, or, it could be something absolutely less than wonderful. Both are deserving of the same degree of understanding, reflection, engagement and decision-making as we keep evolving. Something wonderful can change into something dreadful...and something dreadful can change into something wonderful, as they become part of our life plan. Only we can decide what we do with what we've got, no one else. We can share our thoughts with others, seek wisdom, learn, remain open, make decisions from our own gut.

We can decide how it is we will manage and feel about what is interjected into our life.

So, I believe it is within the power of each of us to recognize and manage what is that seems incurable and decide how to deal, how to live, how to be.

So, that's where my head is at on this Sunday, and I'm feeling blessed, fortunate and GOOD!

Now back to the here and now of tomorrow, and my comfort zone of information, as I circle back to the beginning of this post to close out this update!

Last Monday, I met with my physician who is overseeing the protocol for my transplant at Hershey this week, along with the nurse transplant coordinator, and I came prepared with my list of clarifying questions about the minutia of this coming week.

For some reason, I wanted to know when exactly will I receive melphalan, the hi-dose chemotherapy that will wipe out all my bone marrow, myeloma cells and anything else that isn't nailed down in my system early this coming. Will they meet me at the registration desk with my I.V. pole? Will the I.V. drip be synchronized via an atomic clock? I had to know! How silly.
I did need to fill in some gaps about process and side effects. I learned everyone is different, and there is a good possibility I may feel pretty poorly for five to seven days, not just the first three days (which was what I had initially thought.) Hmmm. I've also learned that before, during and after the I.V. begins its drip drip drip, I must crunch on crushed ice to alleviate the mouth sores that typically go hand-in-hand with melphalan. Hmmm. Well, that's the way it goes. Ice, I can do. I also learned some people actually receive a morphine drip to ward off the discomfort. Hmmm.

Well hey, bring on the drugs I say—not interested in “toughing it out” AT ALL. I'd much prefer to be in La La land than feel like a semi is road testing it's tires on me.

I already knew I will be in isolation, as my immune system will be completely bottomed out & obliterated, thus subject to feather weight germs / infections. I've learned that I will not be able to leave the unit where I will be for the next two weeks. Based on how I progress, I will be permitted to leave my room. I'm told the melphalan will probably make me extremely weak and tired.

I will be infused with my stored stem cells on Tuesday, if all goes as planned. That process will jump start my wellness. I'm told there is always an aroma of crèamed corn in the room when stem cells are transplanted into a patient. Well, that's a new one. How bizarre.

I believe I have enough information for now. I will take it a moment at a time, and I will try to retain my experience for my next blog posting, which probably won't be penned until the last week of October.

So, I'm all ready for this next road trip. I spent some of today packing for my next two weeks: ironing my pajamas, packing color coordinated scarves, ear plugs, books, Ipod. All the comforts for chemo and a transplant.

Looking forward to the next time I will write a posting here.

Nothing incurable is in my way.

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