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patient with a port and his doctor

Three Days of Cancer Stability

This September is Blood Cancer Awareness Month. It’s my 8th one as a member of the blood cancer club. It’s not a club any of us asked to join and I still occasionally shake my head wondering how this all happened. But as my oncologist told me 8 years ago and as he told me just the other day, our goal for my myeloma is to be on cruise control, and that’s basically where I’ve been since starting my current treatment regimen two and a half years ago.

Having acknowledged I’m on cruise control and doing relatively well, I’m still spending a good amount of time doing things medical-related. Let’s recap 3 somewhat typical days in the journey.

Three days in the life of a myeloma patient

Wednesday: Back pain wreaks havoc

I awake early as usual. 5:30 AM. My dog and I go from the bedroom to the living room. I let her outside and put water on for coffee. I put the TV on and go for a mix of news and sports. I make my coffee, put a splash of chocolate sauce in it and make some toast. My dog hears the toast being buttered and is back inside staring at me. After coffee and toast, I do some stretches and ice my recently achy back. I finish the stretching and get up to feed my dog. Typically, after she eats, I take her for a walk and then go to the gym. Because of my back, I know I’m not going to the gym, but I do plan to walk her for the first time in several days. We take a slow walk around the block and I’m keenly aware that my back is still problematic. After the walk, I shower, say good morning to my now awake wife, and I head over to my oncologist’s office for a blood draw. My veins don’t work too well anymore, so we must use my port for my monthly blood draw and because of this, I can’t just go to the lab. I go to my doctor; they access my port and I walk the blood over to the lab. After dropping off my blood, I go back home for an hour or so. Then it’s off to the dermatologist for my quarterly full body check. With my lowered immune system, I’ve become particularly susceptible to skin cancers, so we must stay on top of things. The remainder of my day is free for a nap and a movie with my wife. I go to bed around 8:30 PM.

Thursday: Frustration at the physical therapy office

Repeat the morning routine except for a much shorter walk with my dog. After the usual routine, I go to physical therapy for my back. The pain is a bit less but still traveling down my left leg. At PT, the therapist wants to add an electrical stimulus but wants a written ok from my doctor. I tell it’s fine, but she stands firm on needing the doctor’s ok. I tell her, I’m sure he is ok with it but definitely isn’t going to write a note saying as such. It’s hard for the therapist to understand I’ve been doing this for 8 years continuously and I am a good judge of what I can and can’t do. My frustration rises with the inflexibility of the therapist. After PT, it’s back home for lunch and a quick nap. Then I go to my oncologist for a quick review of my latest labs, prior to doing my Friday infusion. At the doctor, we’re pleased with my latest labs. “cruise control, just like I told you many years ago” says my oncologist. I tell the doctor that x rays show a degenerative disc in my lower back, but no lesions or visible signs of cancer. He’s glad to hear and tells me to do yoga and stretch, that I’m getting old, which is a good thing. The remainder of the day is free.

Friday

Repeat the morning routine with a bit more expediency, given I need to be at the oncologist office for my infusion by 8:15. On the way to the doctor’s office, I stop at the store for a couple of snacks and lunch. My infusion is about 5 hours long, so I need to be stocked up for the day. The doctor’s office always has a box full of a variety of chips, but I’m trying to minimize carbs, so I need to bring my own food. With my infusion, I am pretreated with high dose Benadryl that makes me loopy and steroids that make me anxious and hungry. I like to get to the doctor’s office early, so I have the pick of infusion chairs. I prefer the corner away from all the activity. Typically, I chat with a friend and fellow patient for a bit, then I dose off for a while. When I wake, I’ll watch a show or two on Netflix. Soon enough it is 1 or 2 in the afternoon and I’m done. Once my port is unhooked and I am untethered, I gather my stuff and take myself home where it’s back to bed and some more sleep. My friend actually goes to the gym after our infusion. He’s basically on the same regimen as me and I don’t know how he does it. All I want to do is sleep afterward.

Finding my new normal while my myeloma is on cruise control

And that’s my 3 days of stability. Some call it a new normal, others call it a routine. Any way you slice it, if you had told me 8 years ago that this would be my routine or my new normal, I would have said no way, that I can’t go through all that. But we all adapt and get used to this newness, which is no longer so new to me. We do what we need to do, trying to remain positive, fit, strong and engaged.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Blood-Cancer.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • VinnieCent moderator
    2 months ago

    This made me stop and remember parts of my treatment – like infusions – that I had completely forgotten about. Wow. I remember infusions just being a time when I just sat in a chair and chatted with nurses for hours 😂 I never thought of how demanding this could have been for other patients. I’m grateful that you shared this with as much detail as you did.

    P.S. – Chocolate syrup in your coffee though? I’ve done hot chocolate in my coffee – but never chocolate syrup. I will let you know my thoughts when I try it 😆

  • Daniel Malito moderator
    3 months ago

    @mattg It’s good to give a day-to-day perspective on just what it’s like to live with these awful illnesses we have. Sometimes the minutiae of the struggle gets lost in the grandiosity of the word “Cancer,” and even we sometimes forget just how good we become at surviving every day. Great stuff. Keep on keepin’ on, DPM

  • Racheli Alkobey moderator
    3 months ago

    Matt, this is an incredibly insightful view into what it is like to be on cruise control with your diagnosis. I’m grateful for your vulnerability to share. While I am an “expert” on the type of cancer I was diagnosed with, I must remember that there are so many other types of blood cancer that are wildly different. and in order for me to be an advocate and fundraiser for this mission, I should know the day to day life. Thank you for sharing <3

  • Ann Harper moderator
    3 months ago

    @mattg Yes, our new normal may not be the choice we would have made, but it is the life we live with now. For me, there’s the life before cancer and the after life. It’s been ok and definitely better than the alternative. We never know how strong we are until our strength is tested. Good luck to you.

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