Oh Myeloma, you are becoming too predictable in your unpredictably! I make plans, I change plans. I think I’m ok, I’m not ok. I feel well one moment, and awful the next. I can “tell” now when I am “worse”, I can just “sense it” myeloma. Then my lab results confirm it. I’ve sure learned a lot about life, myself and my physiology in 6 years 9 months. I know my body, I know what’s happening.
Truly now, living life one day, one week, one month at a time.
In 2008/2009 prior to diagnosis, I was in denial. Actually it was “selective ignorance”. With little cancer history in my family (except 3rd gen cousins on my Dad’s side with breast cancer), it NEVER crossed my mind that my symptoms and side effects then, represented anything more than “normal” physiological changes, allergies, stress and calorie-counting, minimalist eating (almost vegetarian, as I love animals too much to eat them). Being the intuitive aware person I am, I was very aware of my exhaustion, extreme fatigue, crazy bleeding, losing weight, dizziness, headaches, GI issues, food allergies, bone pain, etc, but I “ignored” the symptoms and wrote it off as “too busy at work”, “too busy with family and animals”, ” it’s just this time in my life, getting older”, “allergies”, “female change of life”, blah blah.
Stupid me! Bleeding out for years is just Not normal! I look back on some of my “bleeding out” experiences with humor and horror. Sometimes I would just stand over my sink and just let my nose bleed until I felt light headed, thinking “ok, nose, time to stop bleeding from “allergies”. Stupid! Times during “that time of the month” I would bleed like crazy (I’ll spare you the details).., I got so I would only wear black pants, “just in case”. I wouldn’t let myself think something was actually “wrong” with me. I really truly just thought it was a “phase in my life”.
|Eating the “healthy rainbow” sure didn’t prevent myeloma in my case!|
Fast forward to now.
I can sure tell now when myeloma is “winning” and the meds are not stronger than the battle they are fighting. I can just feel it. The Fatigue. Achiness. The lack of physical “helium”. The Headaches, Dizziness, GI issues, and the Unquenchable Thirst. Ugh, I drink water like a fish, and still I feel so thirsty and dehydrated. And then…, my lab work confirms my intuitions and suspicions. WBC’s low. RBC’s low. ANC low. Platelets low. Hemoglobin low. Myeloma markers up. The return of GI issues. Yep, myeloma you’re “slightly” winning now. Crazy how I can feel you brewing, swirling, churning up disaster throughout my body.
Yet, I still feel so disassociated (mentally) from this whole experience. I “force” my life to be “normal”, fun and productive (on good days that is). I just go about my life, saving other lives, as if my life was ok. I am not a panicker. I’m not a worrier, and I have really reduced most all stress in my life. Actually, I have always tended to under-react to things I should be reacting more intensely too. More than ever now, I am following my old adage “You Can’t Control The Things You Cannot Control, So Analyze It, Understand It, Accept It, Move Forward”. But there are those times when suddenly it hits me: I HAVE INCURABLE CANCER. I know I am going to get sicker than I ever expected, and I’m going to leave this earth… sooner than I “planned”…
I physically feel you creeping further into my life myeloma and I realize I have little to no control. It’s a very strange, surreal feeling. After 6+ years of treatments, 7+ years of symptoms, I “know” you myeloma! You are the monster that lives within me.
So with all the reading I do about myeloma, all the blogs I follow, all the posts I follow, all the research I read to stay informed about current and new medication options, it hits me there will come a time I will exhaust all my medication options. Wow, it hits me: I REALLY am not in control of my body. Medical science and medical research (and all the brilliance behind that…) controls whether I live or die. So when I have run through all the myeloma meds.. What then? Start over again? Go back to meds that stopped working and see if they may work again? Try higher doses of ones I’ve become “refractory” to? Agree to another stem cell transplant, if I am even eligible? Participate in clinical trials? What happens when I run out of options? What would it be like to not be in treatment at all? What would happen if to me if I didn’t have anymore chemo or medication options, or if at some point I just reached my limit of being in treatment and decided, ok, enough. No more treatment, no more meds… let nature takes it’s course…
I asked my Doctor this last month…
Here’s how the conversation went (after going over all my labs and concluding I will need to change to another treatment soon).
Me: “So my amazing Doctor, let me ask you a question that I know you don’t want to answer”… “Not to worry, I have NO intention of doing this”, I reassured him… “but me being me, I need an honest “reality check”…
“What if I decided to not treat any more”… “What if I decided that’s it, I’m done with meds, tired of side effects, and I just want to live life “freely”… (I take a breath, and so does he and so does my hubby Jim)… I continued, “So How Many Years Would I Have, If I Decided To Go Off All Meds?” …. pause … “Months”, he replied. I thought he may not have understood what I asked, so I rearranged my question and restated it: “Sooooo, if I decided to not treat anymore, how many YEARS would I have?”
He leaned closer to Jim with a smile and said, “You know I am not God, and I don’t have a crystal ball, doctors are only human”… he continued after a pause… “If you chose to not treat any more, and go off all meds, you would have months”…“Your treatment medications are keeping you alive”.
Saaaaay Whaaaaat? Process Julie, Process. What? Huh? Ok, move forward, respond.
“Ohhh, wow… really…well ok…”months”… “Soooo… if we really wanted to do that Hawaii trip I keep mentioning, it’s time, right?” Me being me, I need further reality in my face…
“Yes”, he replies, “do whatever trips you want, but be aware your immune system may not be able to handle all the potential infections out there”… (We discuss and recount what happened in 2012 when we went to Hawaii and was sick for most all of the trip.)
“Travel may not be the best thing for you Julie, but I understand”, he comments. “It’s not necessarily the myeloma itself that will “get you”, it’s the (potential) complications and (potential) organ failure and compromised immune system, that “gets” most patients…”
Process, Julie, process…
I ask: “so when would be the best time for me to take a trip, if I decided to take the risk?” He replies, “Actually, the best time would be between your upcoming medication change.”That would be an ok time to take a little break, go on a trip, then begin the new treatment”… “But be aware”, he continues, “something could happen on the trip (like 2012), and this trip may not turn out to be what you “expect” it to be… your energy, stamina, compromised immune system…”
Process, Julie, process…
I love this Doctor. He’s intelligent, insightful, caring, thorough, goes along with my blunt, direct and joking personality. We understand each other. He thinks I’m a bit “off the wall” and nutty, and that’s good, I am. I’m not the typical cancer patient. I’m verbally direct, mentally strong, and want reality. Always, reality.
Jim and I drive home just like any other appointment. Navigating the freeways distracts me and forces me to focus on safe driving. I always drive. “So Jim, did you hear what I heard?” Jim’s eyes are moist and emotional. “I did”, he says… “Did I really hear “MONTHS” I ask him. Jim is having a hard time. We’re trying to process what we heard. Did we misunderstand. Hear wrong. We talk about what we “think” we heard. We talk about what it means. Surreal. Unbelievable. Hard to digest.
Process, Julie, process….. Myeloma is Incurable. I’ve known this from the moment of diagnosis. Myeloma is “treatable”, but myeloma is chonic, myeloma is forever. Myeloma changed my life forever and continues to.
Process, Julie, process…
So it’s been so hot I haven’t taken my lil bug out for a spin in a long time. The other evening, I finally felt I had the energy to clutch and shift, so lil “Bucket List Bug” and I went for a short spin around the block.
That’s my life today, 9.6.16.
How’s your life, your challenges, successes and joys? What plans and goals do you have? Let me know by leaving a comment.
live well, and make a difference somewhere, somehow, with someone or something
as often as you can!