I told you in my last post that I had gotten a skeletal CT scan a week ago Saturday, November 9th. I know what these scans are looking for and I was somewhat apprehensive about getting the results. I still haven’t heard from my oncologist about the scan and I won’t be talking to him about it until Wednesday, the 20th. However, my GP called me on Friday the 15th at 5:30 PM to talk to me. Truth is, whenever my GP calls at 5:30 on a Friday evening it’s never good news.
The first question he asks me is if I’d heard anything about the scan. I said no, nothing. He then proceeds to tell me that I have a four centimetre tumour (lesion) in my right femur. Now, that’s a fairly large lesion but it’s in a fairly large bone too. Still, one of the main problems with multiple myeloma is bone lesions. Patients can have several bone lesions simultaneously making their lives somewhat precarious. Any wrong move can lead to broken bones and immobility.
My GP is rightly concerned about this femoral lesion and tells me that I may need a full length splint to keep my leg immobilized but it’s Friday evening now and I’m in no shape to even consider getting one, especially if it means going to the ER. That’s not going to happen. Not in a hundred years!
After a time my GP and I settle on a plan to keep me more or less immobilized, at least until Monday. Carolyn and I get back to our dinner. A while later my GP calls again after having consulted with an orthopaedic surgeon. The surgeon tells him that I will probably need radiation on that tumour and that radiation treatments happen in Victoria. Until then, I need to keep my right leg as immobile as possible. We’re getting a wheelchair on Tuesday. That will help, and on Wednesday I talk to my oncologist about where we go from here in terms of chemotherapy and now radiation treatments.
You know what? I want some straight answers. That’s all. I know that straight answers are not as easy to come by as they should be, but I’d like a clear, unadulterated assessment of my prognosis at the moment, if you don’t mind. So far, my oncologist and I had not even discussed bone lesions and the treatments for them, and we assumed that the lenalidomide/dexamorphosone chemotherapy drug combination would work and that we would reassess in a year or so.
Yes, I understand that multiple myeloma is highly treatable although it’s incurable, but every myeloma patient presents with an idiopathic set of conditions making blanket prognostications about remissions and potential lifespans kind of useless, if not overly optimistic. So far I have no idea how bad a case of myeloma I presented with and my oncologist is not really interested in what stage I’m at. He says he’s much more interested in how a patient responds to treatments than where they might be on a staging continuum. That’s fine. I hope that sometime soon we will actually be able to assess just how I’m doing on a new course of chemotherapy drugs and that we will be able to conclude that what I’ve experienced so far is a temporary glitch in my treatment.
Whatever. I like taking road trips on winding roads in unfamiliar territory, but a nice stretch of open highway now and again can be exhilarating too. I’d like to see some open road for a change where obstacles can be seen a long way off and I can put the petal to the metal. Is that too much to ask for?
7 thoughts on “8 Tread lightly, you could break a bone!”
Roger – I hear your frustration….and no wonder. I would be screaming and tearing what little hair I have left out of my head by now. It appears that this latest journey is forcing you to muster all of your courage and reserves simply to stay on this side of a seemingly decent person. However, nobody says you have to….IMHO you are allowed to not like this, to rail against it and to increase your cussword vocabulary by at least four fold. (I’m sure you can do that even without the help of a dictionary, and if not, then you are not the man I imagine and care about!)
Frankly, it all sounds pretty shitty…pain, uncertainty, conflicting info, allergies, and potential broken bones. Who needs this?
I hope you and Carolyn realize you only need ask if there’s something you want or need that I can get or do for you. It’s damned difficult to guess how one can be helpful without being interfering so it would be most advantageous if you and/or Carolyn would simply call out when a little help could ease the daily grind for either of you.
Beyond this, I applaud your commitment to document this journey. What a gift that is to me and others. Thank you, Bette
Thanks, Bette. It’s hard to know when and how to ask for help, but we’re slowly learning. Some of the tasks we need help with are so trivial by most standards that it seems ridiculous to ask. We’re trying to figure it out. Carolyn will need a lot of help over the Spring getting the garden ready and I have no idea how well I will feel and what kinds of things I will be able to do. My oncologist makes big promises, but I’m a little sceptical. I speak now and again with a woman in the Valley here who has had myeloma for ten years and is still going strong. She’s now 76 years old and has great insight into chemotherapy, radiation, doctor/patient relations, and being our own best advocates. I’m learning.
Thanks you for your thoughts. I’ll write again on Wednesday or Thursday after our consultation with the oncologist.
Keep me posted Roger. Good to speak with you last evening. You will be a strong advocate for yourself. We are to some extent in charge.
They’re putting me on CyBorD. It’s what I expected. I spoke with Dr. Yee this afternoon for a few minutes and he’ll get the ball rolling for my treatments to happen here in Courtenay. I asked him about the CT scan but he wasn’t too forthcoming. He actually asked me if I had got the skeletal scan. I said, yes, ten days ago. He had a quick look and said he’d be taking to a radiation specialist about the lesion in my right femur. He didn’t answer my question about how to deal with my leg (immobilization, splint, etc.) He seemed to be in a hurry when I spoke with him. So, it’s more hurry up and wait.
When’s a good time to call you, Brenda? I’m not sure if I will be able to make the support group meetings because Thursdays are my days for my chemo treatments. I have a standing appointment for Thursdays at 2 PM for an injection and check-in.
Hi Roger, thinking of you and Carolyn, sending you love and courage. And keep writing!
Thank you, Monika. I will keep writing, you can be assured of that.
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