Everyday, I think about having cancer and everyday I forget that I have cancer. Reminders of my illness abound. It does not take much to make me hesitate and ponder the calculus of my future.
For example, because we live in a remote area, I often shop on the web. Just last week, I procrastinated about some sports equipment I’d found on sale. As I anticipated hitting the purchase button, I thought, “Wait a moment, maybe I should first hear what my oncologist has to say at my upcoming visit.”
Then, our roof needed replacing. Currently, it is bald. I couldn’t help but think how it resembled my head following chemotherapy. The sun exposed all the irregularities: its bumps, the blistered surface, and the misfit sheeting. Soon, new shingles will cover the imperfections much as my hair hides the lumps on my skull.
So it goes…
I expect the cancer to return. I think about it but seldom worry about it. I stay informed on the latest developments in research specific to multiple myeloma. I’m comfortable with the options in my future. Life’s surprises are not limited to anticipating what the illness will do. I attempt to take things a day at a time. I accept that I am occasionally sidetracked by irrational anxiety.
This week, marks two years of drug-free remission since my stem cell transplant at the Seattle Cancer Care Alliance. My health during that time stabilized about three months after the procedure.
I received the complete battery of childhood vaccinations at one-year post transplant. I opted for both flu shots last season and will follow the recommendations again this fall. This year, I’ve had a colonoscopy (normal), PSA test (normal), and lipid panel (excellent). In May, I underwent dental surgery for an extraction and insertion of two implants.
I see my oncologist, Dr. M, at 60 to 90 day intervals. Multiple myeloma is a blood cancer. Accordingly, routine blood draws determine its status. Overall, things look good. I not only feel well, but my blood work confirms that I am healthy. Low-grade anemia is the only question mark on my CBC test. The chemistry panel, which measures organ function, looks fine. For the last 24 months, my M-Spike, the best indicator of disease, hovered between too small to be quantified and 0.1 g/dL. This month, for the first time, the number ticked upwards to 0.3 g/dL.
Dr. M has a cheery disposition. I’ve been a boring patient. Usually, he stands and delivers a rambling somewhat incredulous exposition about my remission. Today, he entered, shook my hand, and took a seat. Though my lab tests look good, the ascending M-Spike prompted him to discuss with me the value of what is referred to as maintenance therapy. He knows I am determined to remain drug-free. We will more closely monitor my blood to determine if this is just an aberration or a trend. Until further notice, I am now on a monthly visit schedule.
Remissions are, by definition, temporary creatures. Multiple myeloma, on the other hand, endures. Like a dragon sleeping in the cave of my marrow, it is destined to awaken. The question for patients is whether to risk going after it using weapons that carry their own dangers or wait until it’s actually breathing fire.
That proposition led to an awkward moment in Dr. M’s office. He is a compassionate man. No doubt, some of his patient’s pain and uncertainty leaks, by way of empathetic osmosis, into his life. For a while, we’ve been able to tacitly ignore that this cancer has staying power. I felt guilty, as if I’d done something wrong, broken the pact we had between us. Yet, given the realities of MM, this development was inevitable.
I am a well-informed patient. Dr. M is an experienced oncologist. The tiny bump in the M-Spike number showed that the myeloma stirred a bit in its lair. When it comes time to go after that dragon, I’m glad someone who cares will come along.
P.S. Today, I’m more relaxed. Technically, the remission is intact. Many of my acquaintances with MM can only dream of such a modest number as mine. So, I have reason to rejoice. This is just another day in the life of a survivor. There’s unreasonable fear, confusion, as well as good old forgetfulness.
Good Blood, Bad Blood 
I don’t know if this will be helpful to you, but my hematologist doesn’t believe that the m-spike is a reliable test. She never even glances at it. She looks at other markers instead, including uric acid.
I am never concerned when I notice the worsening of just one marker, especially if it is only a very slight worsening, as in your case. I instead look at the whole picture and at trends, as I am sure you do, too. See if that pesky 0.3 goes back down with your next set.
I love that photo of Spanky! 🙂
LikeLike
HI, Its nice to read that someone over there is in drug-free remission. Even though I ask about maintenance therapies I don’t really want to take anything unless I have to, but I still get a teeny, tiny bit thoughtful when I read about intensive consolidation and maintenance therapies in the US.
A friend’s PP (who hasn’t yet needed treatment) jumps by 3, 4 and 5 whole points and as long as it keeps coming back down she’s happy – well reasonably! The difference it makes once you’re the other side of treatment!
With regard to spending money, the MM makes me spend more. Whereas I would have thought – ‘No, there’s nothing wrong with those curtains/settee/cupboards’, why replace them – I’m now thinking ‘I’d like to change them, why not!’ If I can afford it I may as well have what I want while I’m here!
LikeLike
In November, I hit my three year mark out of treatment for a rare form of sinus cancer. I bristle a bit at the label “survivor” for the same reason you might – you’re never done with cancer. Yeah, my oncologist calls me the poster boy for recovery, but with every twinge…
As I’ve often said, even as a someone who’s been declared in remission, life is lived between office visits.
But as I also say, any day I can get up out of bed, get dressed in my own clothes, and fix my own breakfast, is going to be a good day.
I look forward to your posts and your photography. Thanks for taking the time. And I wish you many more years of continued health…
– Jeff
LikeLike
John, I always appreciate your photos, your prose, your observations.
Thanks!
LikeLike
I also look forward to your posts and photography and rejoice with you for the continued remission.
LikeLike
Hey John, Chris from Vancouver Fire here. My M- Spike went from 0.1 and started to move to 0.22 for a couple months then back down to 0.1 again last round of tests. Don’t sweat it you’re doing great. Take Care Chris
LikeLike
I love your opening sentence, and it just gets better from there. As always, I take great comfort and support in your words. Sorry to hear about The Spike, but your attitude, as ever, strikes me as perfect.
Happy fall.
LikeLike
Your pictures are beautiful, and your words very moving. I am always touched by your writing.
Once cancer has touched our lives, it’s hard to ever attain that feeling of invincibility again. I don’t even try. My approach is similar to yours – I don’t obsess about it, but I try no to ignore the dangers either.
When I was very sick and didn’t have the language yet to discuss the disease with my children and family, my daughter Nena (16 at the time) got me to read The Cancer Ward by Alexander Solzhenitsyn.
Have you ever read that book? It is honest, and true, and completely un-patronizing. I loved it. It gave me the courage to address a lot of issues I didn’t even know I had, and a vocabulary to discuss those issues with my daughter and family.
My very best to you.
Liliana
LikeLike
I like the image you paint about the dragon. Slaying this dragon is a hard road. I’m glad for you, that you can linger on in you remission.
I hope the spike returns in it’s cave….
Sander
LikeLike
Hi John, thanks for visiting my blog! My husband’s MM “numbers” are described as “stable” and he remains drug-free for the moment. We have come to realise that its not the numbers that count (ho ho ho!) but how he is feeling, and right now he feels WELL. So, I would agree with you – avoid the drugs until you have no other choice… and be well!
LikeLike
I agree with Roobeedoo, stay drug free for the longest time if your QOL is good and there are no other worrying symptoms. We know there comes a time to ‘push back the dragon into the cave’ should he awake (the poet in me loves that) but you seem a very long way from starting yet again.. Have heaps of fun with your on-line shopping and with every day. We send you all very best wishes for continued remission.
LikeLike
We have a woman in our support group who went into a remission after transplant. She had no m-spike. A few years later, a small spike appeared and started to inch up very slightly every month. She retired from her job figuring she was going to have to start chemo soon and her m-spike went back to zero and stayed there. I know of others who stayed stable with a very low m-spike for a long time. We are VERY grateful for this chemo vacation that Tim has had and I often wonder if those on maintenance would be doing just as well without and not have the side effects and risks to contend with. I suppose if one has a lot of chromosomal issues and aggressive disease though, maintenance makes good sense.
LikeLike
The first paragraph of your post struck a chord with me, as I also have MM. In fact, just yesterday I’d discussed much the same with my wife. Thankfully, it’s still stage I where it has remained for the past 18 months (I am 44). Every day I wake up remembering I have cancer, but it is so nice to forget during the course of the day. I’d started a blog to help me deal with MM, but I have not updated the thing since June. I suppose I wanted as few reminders as possible.
I appreciate the honesty, intellect and appreciation behind your posts. I wish you well in your fight, and will be a regular reader of your blog. Take care.
LikeLike