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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