#myeloma

21 Love.

~ Roger JG Albert ~ 7 Comments

Sunday morning. The huge snowfall we had over the past few days is slowly yielding to the onslaught of warmer temperatures and steady rain. It will still be a few days before we can extricate the car from its cocoon of snow and ice but that’s fine because we can always use the truck to get around. Having two vehicles is a bit of an indulgence, but the security of a backup is important to us right now.

Every once in a while we hear a loud thump as large chunks of snow and ice break off of the load on the various metal roofs we have like a calving Alaskan glacier and crash to the deck or the ground below. Metal roofing creates a nice slick runway for ice and snow to slide off the roofs. We need to be vigilant when we walk under the eaves of the house or outbuildings for fear of getting walloped. I’m pretty safe though because I haven’t left the house in days, since my last visit to the hospital on Thursday actually. I’m having a rough time of it right now and I don’t rightly know if it’s because of the chemo or the myeloma. I know by my lab results on Monday that my hemoglobin counts are down and that means anemia is getting worse. Who knows why. I just know I’m exhausted for no goddamn good reason. I don’t mind being exhausted. Exhaustion can be a reward, actually, after a long run or a good workout. Being exhausted after sleeping all night and most of the day is not what I consider a reward.

I’m backing off my pain meds for a bit. I want to see where my baseline is. Getting the right dose of pain meds means constantly re-assessing pain levels. To be sure, pain varies a lot for me, not only in intensity but in kind. Lately I’ve experienced a dull, throbbing pain in my legs, particularly my right one. Every once in a while I get a spike of pain but that’s usually manageable. On my last visit to the hospital for my infusion of zeledronic acid, as I was sitting there in the chair with tubes sticking out of me, I got a cramp in my left side. I sometimes get cramps in my left side as an artifact of the surgery I had in 2002 to remove my left kidney. In any case, the nurses got very attentive all of a sudden as I writhed in my chair trying to find a comfortable position. They thought I was having a heart attack or something. It took me a while to assure them that it was just a cramp and not to worry. Pain is such a weird thing. I’ve had chronic pain for a couple of decades related to low levels of vitamin B12. Now, I have a hard time distinguishing between the chronic pain of the past few years and the new pain created by my myeloma. Not that it’s important, I guess, but doctors do want to know what kind of pain I’m having. I get pretty frustrated at times because I don’t know what’s causing my pain. It might be arthritis or degenerative disks too, but they don’t want to know about that pain. They want to know about pain associated with the myeloma. It’s not a simple thing to tell the difference. It’s funny: my orthopaedic surgeon in Campbell River asked me about pain in my right leg. I told him, yes, I have pain in my right leg, along my femur and even below the knee. Well, he said, that’s odd because your lytic lesion from your myeloma is at the distal end of your femur. Isn’t that where the pain is? Well, yes, but, but…

So, dealing with the symptoms of myeloma is one thing, explaining how I’m feeling is another thing entirely.

Some people love winter. They’re off skiing, snowshoeing, and doing other wintery stuff. I’m not a big fan. I’m a big fan of summer. You’ll never catch me complaining about how hot it is. Winter to me means short hours of daylight and long rainy nights. I am fortunate, though, in that we have a beautiful home to hunker down in and I have Carolyn as my caregiver. There’s always a hot cup of coffee ready for me in the morning and tea during the day. It’s clear I’m not the best of company a lot of the time but Carolyn is always there. I don’t know what people do if they don’t have community, family, and love, and find out later in life that they have incurable cancer. I’m feeling good knowing that I’m not on this road alone. Of course, dying is a lonely affair. You shouldn’t expect to have people accompany you into the grave like the Chinese emperor Qin Shi Huang Di, but having them along as companions until the last moments of life is as good as it gets in my books.

20 Calm down!

~ Roger JG Albert ~ 2 Comments

The piece of music posted here below came to my attention when one of my FB buddies, Ed Brooks, posted a link to it. It’s available on YouTube along with a lot of other fabulous and calming music by Arvo Pärt and others.

Yesterday was an especially challenging day for me and I was right bent out of shape because I felt so helpless and weak, totally exhausted, not being able to help Carolyn with the snow shovelling and needing to go to the hospital. At the end of the day yesterday I listened to this piece of music and it almost brought me to tears. I listened to it again as I lay in bed getting ready to fall asleep and it was like a lullaby. I actually fell asleep listening to it. I woke up later and played it again.

Today, I’m better. We went to the lab this morning for more bloodwork and that was fine. It’s bloody cold in Cumberland this morning and we have another snow warning in the forecast. Whatever. We can use the truck to get around until the end of next week. We were supposed to take it in Tuesday to get some body work on it, but Carolyn called the autobody shop and changed the appointment until Friday. I hope that delay will allow us to get the car out of the yard or at least at the bottom of our fifty metre driveway.

We see my Victoria based oncologist, Adrian Yee, on Tuesday via teleconference from a ‘studio’ at the Comox Valley hospital. Remote examination! At least I get to talk to him and discuss my progress. Like I said, I’m feeling better. I’ll know I’m really better when I can get down to my shop or studio and finish a painting or carve some wood. Today I’ll do some drawing. That’s a start, at least.

Have a good day all of you and count your blessings!

12 So it begins…

~ Roger JG Albert ~ 4 Comments

First off, I’d like to welcome all of you who are new to following my blog. It’s gratifying to know that my writing is of interest.

[Still holding off on the post about the Emergency Department at the Royal Jubilee Hospital in Victoria. I’m working on it, but I need to write this post and at least one more first.]

Day before yesterday Carolyn drove me up to the North Island Hospital, Comox Valley Campus (I think that’s right) for my first chemotherapy treatment using a drug combination sometimes referred to as CyBorD. The ‘cy’ stands for cyclophosphamide, ‘bor’ stands for bortezomib and ‘d’ stands for dexamethasone. This article from 2009 suggests that this combination is associated with a very rapid response with manageable toxicity. I can only hope that it works for me.

I get the cyclophosphamide (cyclo) and the dexamethasone by tablet to be taken orally every seven days on a cycle of four weeks. I get a subcutaneous injection of bortezomib on the same day as I take the oral doses of the other two drugs. I get another drug by infusion once a month. It’s called zoledronic acid and is a bone strengthening medication often given to patients who have weakened bones due to cancer, which I do. I haven’t had my first injection of zoledronic acid yet but that’s coming soon.

So, I take a schwack of pills, probably fifteen, every Thursday morning then head up to the hospital in the afternoon for my bortezomib injection and for a visit with the oncology nurses. The oncology department at the hospital is superb. The staff is wonderful, calm, attentive and supportive.

The day before the day before yesterday Carolyn drove me to the hospital for a visit with the GP oncologist who is the local connection I have with the oncologist at the BC Cancer Agency in Victoria. Like the rest of the staff, Dr. Bakshi explained all the procedures I was about to experience calmly and attentively. One thing I appreciated with Dr. Bakshi was the way he explained the difference between myeloma and other forms of cancer. Myeloma is not like pancreatic cancer or other forms of virulent cancer. It’s more of a lay-low, make you sick for a long time type of cancer. It’s not unusual for people with myeloma to live ten years after being diagnosed and by then life is mostly a rear-view mirror phenomenon in any case. Myeloma is a disease mostly of older people.

I have to keep this post short because I have very little energy today. Yesterday I had a ‘high’ which was like I imagine I would feel after drinking twenty cups of strong coffee. Boy was I hyper! That’s caused by the dexamethasone. I had a hell of a time trying to sleep night before last, but last night was okay. I finally got a different prescription for my pain meds, hydromorphone. It’s a slow release prescription. I take two tablets a day twelve hours apart rather than taking two short acting tablets every four hours. I still have to get up to pee at night a couple of times, but not having the alarm go off every four hours is quite nice.

Today I got up feeling like I had a huge hangover. That feeling is still with me. It’s not all that pleasant, but it’s tolerable and I’m not going to complain about it. I knew that chemotherapy was not going to be a cake walk and I was right. I have a long way to go with it yet and the experience with it will change as I go along. I just hope I can tolerate this cocktail of meds and it doesn’t push my peripheral neuropathy to intolerable levels, nor does it damage my poor lone kidney.

More tomorrow if I can.

7 About pain, cold sweats, hallucinations, delayed chemotherapy, rashes and, other fun stuff.

~ Roger JG Albert ~ 3 Comments

[A note: I’m used to writing posts here of approximately a thousand words. Because I’m so fatigued with anemia and other conditions that affect my concentration, for the foreseeable future I’ll make my blog posts a little shorter. That way I will be able to continue writing and not tire myself out too much.]

I started the chemotherapy drugs, lenalidomide and dexamethasone last Thursday morning. I was to take one lenalidomide tablet and five dexamethasone, continue with the lenalidomide for three more weeks and five dexamethasone tablets every Thursday morning until they were done. Frankly, it was a relief to finally get going on a treatment for my multiple myeloma (MM), any treatment. Well, you know what they say about the best laid plans of mice and me. They never go according to plan, and this was not about to become an exception to the rule.

It must have been Saturday (I got a CT scan that day) when I noticed that my butt was getting really itchy. Well, naturally, I scratched it. I knew it isn’t a good thing to scratch an itch, but I just couldn’t help myself. The welts just got bigger and hotter and covered my whole midsection. I developed a slight fever. Carolyn, my very competent care aide spread some lotion on my backside and up under my armpits to relieve some of the itching. Damn good thing too because I was close to losing it.

Well, it turns out that the reason I developed this rash in the first place is that I happen to be allergic to my main chemotherapy drug, lenalidomide. Now, that’s not cool! Lenalidomide is an oral therapy drug, and for that reason is very convenient to take. So, it’s the weekend, I’m itchy as hell, but I persist in taking my chemo meds. On Tuesday, yesterday, I call the oncology nurse in Victoria who seemed quite concerned about the rash. She tells me that she would try to track down my oncologist to get some idea of what to do. My regular oncologist was out of the Cancer Centre at meetings but she tracked down his colleague who told the nurse to tell me to cease taking lenolidomide immediately. So, great. Here I am, not a week into taking my first course of chemo meds and now I can’t take them anymore! What the hell is that all about, universe?

I was pretty bummed out for a time there, but then I realized that this is not an uncommon turn of events in oncology. In fact, about 40% of people enrolled in the lenalidomide/dexamethasone regimen turn out not to be able to tolerate the drugs.

A Cancer Clinic receptionist called this morning to set up a telephone consultation with my oncologist for the 20th, next Wednesday. At that time I should learn more about my next course of treatment as well as what they learned from my last CT scan. Strangely enough, I also got a call from the hospital here in Courtenay telling my that I needed to call them and set up a second course of treatment. She mentioned lenalidomide and I said it’s unlikely that it would be for lenalidomide because in all likelihood, I’m allergic to it and I was told to stop taking it. I guess it takes a while for messages to get from Victoria to Courtenay and back. I soon learned to take all phone calls from the hospital or the Cancer Clinic with a grain of salt and usually wait for confirmation from a third source before moving on with anything.

In my next post I’ll address the fun topics of pain, hallucinations, and cold sweats.

I was going to write a post about the social triage that happens in emergency departments everywhere, and I will get around to that, but for now I have other more pressing issues to deal with. I’m intent on documenting my experiences with myeloma as completely as possible so, for the moment, that will be my priority for this blog. One strange thing that’s happened to me is that I have a recurring dream about the emergency department at the Royal Jubilee Hospital. More on that to come.

3 What? I’m giddy about seeing an oncologist?

~ Roger JG Albert ~ 4 Comments

Well, giddy might not be exactly the correct word to use here but it’s close. I’ve known for a month or so now that I have multiple myeloma, an incurable bone marrow cancer, but I have also been told that it’s treatable and some people live for some years after their diagnosis. But I’m not sure about anything yet because I have yet to see an oncologist. That changed yesterday, at least the anticipation part.

Yesterday, around 1 PM I got a call from the BC Cancer Agency in Victoria, telling me that I have an appointment with an oncologist at the clinic on Thursday, the 31st of October, Halloween morning, at 10:30 AM. I have no idea what to expect because I have no idea at what stage my cancer is at nor what treatment options there are. Oh, I can make up stories based on Dr. Google research, but that’s a futile pursuit. This disease is idiopathic. No two patients are alike. I guess that’s true for most cancers. There are commonalities and there are individualities. The only reason they can be treated at all is because of the commonalities. Without pathological patterns no illness could be treated. Still, the idiopathic aspects of this disease make it hard to compare experiences with others facing the same disease. We can commiserate, but that’s about as far as it goes. That said, there is comfort in commiseration.

So, this morning at 7:45 I attended the medical lab in Cumberland so they could take a dozen vials of blood and some urine (boy, did I have to pee when I got there) in anticipation of my appointment with the oncologist, but also with a nephrologist in Nanaimo on November 7th. On Saturday I have a CT scan and on Sunday I do a twenty-four hour urine collection for the nephrologist. I might already have told you this, but I am taking prednisone now and I’ve had an infusion of some drug the name of which I forget. So, in effect, my treatment has already started. I can’t wait to see what the oncologist has in store for me come Halloween morning.