Today is Sunday July 24, 2011. About one month ago, I was returning on a flight from Seattle, and I took time to write an update for my blog “My Unexpected Journey”. I finished it today uploaded it...and here is what I wrote..
Friday June 10, 2011. It’s about 13 months after my 2nd stem cell transplant. I’m on a plane from Seattle, Washington heading toward the east coast to Pennsylvania, coming home from a conference for my work.
Several blog readers have written to me over the past year, and have inquired how I’m doing. So, what better time than now, while I’m trapped in a small overpriced seat on a plane, and I have my 6 hours of battery life in my little Netbook, mini-laptop, so I will to take time to share how I’m doing.
I’m doing great. I'd even say I'm doing awesome-like, as someone with multiple myeloma.
I could end it here, but, thought I’d provide a little more detail.
Per my physician, I am in “excellent” remission. It isn’t “complete” remission, but I’m the disease is barely evident. Nothing in the urine, a “trace” of cellular whatever that barely registers on the MM dial. So, that’s good enough for me.
Given that I’m on airplane and do not have my latest reports with me, and I’ve never been good with numbers anyway, I can’t recall the exact IGG numbers, etc. I visit my transplant oncologist about every 6 months. I see my local oncologist monthly..but, the local visit changed to every 3 months starting in Feb of 2011. But don’t mistake this for being detached or uninterested in every morsel of info about MM, I’m about as tuned in as I can be, without it taking over my life and carrying a flag about MM— that’s just not my thing!
I have taken advantage of “power learning” experiences.. attending an MMRF patient education day in NJ in May 2010 –that was a very good experience. Took lots of notes, made some good connections. Also supported the MMRF Gala in Oct of 2010 in CT, as well as Laugh for Life event in NYC in May in 2011. Below is a photo of my mother and I at the MMRF Gala in 10/10.
I just bought my tickets for the Gala again in Oct 2011. I wish I had great wealth to do more..as the MMRF mission speaks to me, as a patient. At this point in my philanthropic life, blatantly self-serving, if I’m going to support anything—it’s going to be an initiative that can continue my (and others with MM) longevity and wellness. I’m very impressed with what the MMRF has accomplished through the Consortia of collaborative and integrated research and development of MM specialty medications and moving them forward for patient access.
I did have a little excitement last year though. In April 2010 I went in for my mammography since I had delayed it from the fall of 2009 when I had my 1st transplant. I had a call back where the words were “atypical cells”..blah blah blah, and then my head went to mush. I thought, ”you've gotta be kidding me.” I had a few follow-up tests. It was determined that it was not a “mass” but just cells..which “could” develop into something...and, the recommendation was to have that area removed. Ok, got it, fine, greeeaaat. Memory is coming back to me now about the test(s). I recall needing to lie on this table, breasts-down dropping through some kind of an opening in the table, and they needed to take an image of my one breast as it drooped – and mark exactly where these “cells” were and marked the area with flags, so the surgeon knew exactly where to remove what. Reminded me of "coordinates" that an officer looks at when peering through a periscope on the old show "Voyage To the Bottom of the Sea". Or something to that effect, anyway.
This was several weeks after I had started the Velcade as mentioned..and I was already getting weary of the needle stick in my hand every week, so as the breast jazz was moving forward, I said to my surgeon, “How about a two-fer? While you’re in there removing my nasty breast cells and would be giving me yet another red moon shaped scar, how about you put in a port?” He said “No problem”. So, that’s what he did. Yay! I was glad when all this was done & over with, that tests showed that margins were clear and all is ok.
The port was a good choice. Sometimes scar tissue can build up in your veins when you get stuck a lot by needles and it can be increasingly challenging over time to accept needles. I didn’t want to wind up with bad veins, so, the port worked well. Even better was this cream called “Emla”. I would apply Emla on top of my port area covered by a little patch of Press & Seal about 30 min prior to each time the nurse accessed my port each week. I never felt the needle entering my skin! Fabulous stuff.
I strongly recommend anyone who must have frequent needle access to consider getting a port. I’ve never had an infection (it’s completely beneath the skin) and skilled nurses would flush it each week. No big deal at all. It’s a nothing. Why endure needle sticks? Ugh! (especially if needed weekly or more frequently than that.)
That was the hub-bub for me about a year ago. Since then, I have also been on what is called “maintenance” medication since March of 2011. In addition to that Velcade (and Velcade has now ceased as of March 1, 2011. A little mini-celebration then.) I have also been on 15mg of Revlimid, the 21 day cycle, and 20 mg of Decadron (dexamethasone) every Monday.
I have been lucky. I have had absolutely no reaction to Revlimid. Decadron of course enables me to clean my house til midnight every Monday, organize drawers and do everything else under the sun..because I’m buzzing around like I’ve had interveneous Starbucks. However, it’s routine now.. I lose a little sleep Monday and Tuesday nights..and pretty much ease back to normal for the rest of the week.
My transplant oncologist also shared with me that if things stay on course..and my numbers stay in good range, I would probably stop all medication in March of 2012.
As far as other things I take: I had been on 400mg of acyclovir for 13 months, however my oncologist recently haulted that. I also take 400 iu of Vit E daily; 1000 Vit D; 1000 of Selenium (however I think I’m going to stop that soon & just eat 2 Brazil nuts every day, I think they’re better for you than popping a pill); 1000 mcg Biotin (hair/nails); 50 mg B6. I also have been taking a small scoop of ground powdered Flax Lignans (not oil, not seeds; these are the finely ground / powdered shells of the seeds—the most potent) since my diagnosis in 2009. Good for immune system.
I am careful to not go overboard at this juncture and begin to experiment with Eye of Nute, powdered pigs knuckles or some other craziness out there. My thinking now is: so far, so good. A mix of traditional medications that have worked well for me, and, that I can tolerate – plus, immune builders. I might be singing a different tune and eating freeze dried crickets from Zimbabwe if I heard that they could help and had minimal side effects, aside from the expected chirping.
And let’s face it, our immune system calls the shots. The stronger we can make our immune system by what we put INTO our bodies, how we take care of our health in terms of exercise, staying away from coughing people, washing our hands a lot, etc. – the better off we are. If you have MM and you smoke, for Pete’s sake, get a patch or some other assistance to help you with that addiction. Tobacco is a difficult drug to kick for many – you don’t want that to burden your system when you have MM. There’s help for smokers today, all kinds of choices, unlike 30 years ago. I’ve never smoked – I always thought it was gross, but I’ve known people who have and it is not a “habit” it’s a chemical addiction. Smart people get help. Stupid ones don’t. End of story. So get smart—it’s NEVER too late. Aside from lung issues (cancer or emphysema); circulation or cardiac issues, smoking gives you wrinkles and gives your skin a dreadful color. I’d be too vain for that. At age 53, I can almost watch fine lines forming on my face if I sit long enough in front of the magnifying mirror. What’s with that? Lordy. Isn’t MM enough? Can't we who have MM get a bonus, like, “You might have a stem cell transplant, be on lots of meds that end in 'ide or 'al for most of your life, but, your skin will look FABULOUS! Guess not.
Why normal cells go rogue and turn into MM, who knows. We need to treat our bodies right. And, the faster we can develop pharmaceuticals that trick MM cells into feeling that the environment within our bodies is not a happy place for them to flourish—the better off we MM patients will be, and the longer we’ll live with a “chronic” disease, versus a fatal one.
So, I also have made it a point to eat organic dairy, meats and fruits and vegetables whenever possible and when I don’t think I’m getting ripped off. At least once a week my dinner is simply a huge plate of steamed broccoli with a little butter & a sprinkle of cheese; or, brussel sprouts dressed the same (yes, I love brussel sprouts. Always have.) I also strongly attempt to shy away from anything that isn't whole grain -- breads, pastas, you-name-it.
The more you read..the more it just makes sense. Do I still indulge in things I adore like chocolate, etc.? Of course. Though I never was a chronic junk food / bad eater, I am MUCH more thoughtful about what I eat than ever before and am always reading about what’s “good” and “not good” for the body, and try new things all the time. I also eat so many blueberries and drink SO much “blue or dark berry” organic juices, I’m surprised I haven’t TURNED blue by now.
Back to how I’m feeling. I’ve never had bone breakage or bone issues from MM. I read a lot of information from patients on listserves and blogs about how MM has presented, often through a broken bone. My bones are ok. I just had a body scan about a month ago and it all looks good.
I did start back at the gym in fall of 2010. I’d say I’m at 90% of the energy level I was prior to the transplants. I am not at the gym to do what the people to the left and right of me are doing on the treadmill, stepper or on the machines as planned out by a trainer. I’m 33 in my head, but 53 in reality. Ooops. Keep forgetting that. I’m there for me, to feel good, to do “something”. A forty five minute routine is better than nothing. I hope to go to the gym more frequently than I do currently—working on that.
Oh yes. The Hair. For us girls who might be reading this, let’s talk. Here’s what happened to me. All good. By April of 2010, I stopped wearing my wig after about 3 1/2 months of hair growth. Here's my $375 wig. (below) a gift from my mother when I went wig shopping way back in August 2009 prior to my first transplant (I wanted to be READY!). The photo in my Post #12 shows my wig. I wore it from Feb through mid April 2010. A great investment. Now it's nicely packed away.
I did not actually get my hair cut at all until about June of 2010. I just let it grow. It was short of course..and wavy / curly-ish. People thought I had gone to the hairdresser! What a hoot, as I had poker-straight hair my whole life. This was intriguing, so, I thought I’d let it grow..and just see how it would look as it got longer. NO idea what “wavy longer hair” might feel like or act like. Well, it was not so great.. That inbetween length was a geeky drag, and now I actually like it on the shorter side..so I’ve kept it that way instead of growing it to a blunt-cut shoulder length..like my “old” blonde hair. Also, I had no idea really what color it would be.. as I had lightened my hair one way or another since college -- which feels like about 15 years and is actually about 30 years. OMG! Still waiting for someone to invent that Time Machine..(sigh).
My hair came in darker than I thought it would. When my hair first started to grow in (the pics with very short hair..) it had a mind of its own. My there was no ”memory” of where my hair parted or anything. It was “new” little baby waaah waaah soft hair. Now forming new patterns on my old head. Ha! I remember when my hair had started to grow back, there was sort of a swirling thing going around, close to my scalp. Surprisingly, just a few gray hair--just good genes I think in that case. If I get that gray “haze” look at some point, I may do the low-light hi-light thing.. we’ll see. I do like the new brunette Jody though.
I am accustomed to looking at myself in the mirror now as a brunette..but I must say, when I look at photos of myself, recently taken, I STILL do a double-take.. even after a year. For just a few nano seconds, I think, “Who is THAT?” Oh, that’s me. Right. This photo below was from June 2011, atop of the Seattle Space Needle. This is how I look today:
In terms of how MM has impacted my life..it’s sort of a unique chapter of a story of my life. It isn’t “my life”. I do enjoy however sharing the story when I feel it can be helpful to someone who might have MM, or, to share a perspective of life. that I find I share with people sometimes, based on the kind of con
And finally, I’ll share with you how I am in my head, 13 months post-transplant and counting.
I feel so grateful and fortunate. Not only that I feel ok, but that I do see the world differently now. Is it every minute of every day? No..but, I must say, it is every day. I realize that even though I’m doing well, there might be a time when I might not be. I’m not putting that out there as something to attract, mind you. But, I’m also a realist. I also know though—that ANYone can say that at some point, he or she may not be feeling well. Right? The only difference is, I might have a little advanced knowledge about “why”. The “when” is as unknown as it is for anyone else, frankly.
I do find I can get emotional very easily. Of course, I’ve always been that way. I’m unsure if my body chemistry has changed and exacerbated that tendency, or, because I was pushed into menopause due to high dose melphalan, or, if it’s just me.
As I sit here on this plane typing this, I am tearing up. I pause to look out the window on this gloriously clear day, looking over the plains.. patterned cornfields somewhere between Seattle WA and Charlotte NC where I’m landing in a few hours.. this is just one of the million moments I have where I just take joy in taking everything in. The beauty of this view out the window, the humor in the fact that as a passenger, I’m entitled only to free water or soda, and I can buy a “comfort package” of pillow, blanket & earplugs for $9 from US Air, or, I can buy a “snack”. The lunacy of life. I just love to experience it.
At work, the same thing..if I had a dollar for every time I fight off tears when talking about something that touches something within me with colleagues, I’d be rich. I have to focus sometimes on thought patterns that I hope might clamp off my tear ducts..but I haven’t quite mastered that yet. Sometimes it doesn’t help that listen to an emotional song on my iPod either or flip it over to Lady Gaga or some other outrageous tune. I should turn the darn thing off.
Oh well. The mystery of mind over body. And so it goes for me – this is just me.
I have begun to do some things I haven’t done before..nothing outlandish, but, things that bring me joy. Rode in a hot air balloon with friends last summer. That was a blast. I want to do some traveling. I try to keep perspective on what is important to me, how I truly want to spend my time, every day, every hour, almost every moment.
I find myself observing people and the dialogs they have.. a lot more than before MM. I am amused at the seemingly serious content of conversation people engage in; I sit back and smile inwardly ...as I find much of the time in the grand scheme of things, it is often not very important. However I do respect and never ever belittle what is being discussed, and I often join in. But I may reflect to myself silently afterwards.. thinking how people can actually worry or be concerned about “X”..Lordy.. let me tell you about being worried or concerned.. ha! And from time to time, I may say to myself “this is nuts.” And I laugh to myself. I’d say most of the time however, I move along and swim with the rest.. standing true to what I believe in along the way and I enjoy feeling how I am and who I am. I think going “through stuff”, whether a death, a disease, a “bad time”, however defined, does being to etch a new path of thinking as you move forward in life.
So, I’m finished for now. Thanks again for taking to time to read this. I'd be more than happy to connect with anyone reading this who has questions, needs clarification, or just needs a listener. I'm good at that.
Take care all, and I will post again when something post-worthy occurs!
Jody
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