Me vs. MM: The Hair Dryer Phenomenon
We have a hair dryer at home that cannot be run on its highest heat setting, otherwise it overheats in a few minutes and shuts down. After that, you cannot turn it on again until it's cooled down sufficiently.
A lot of electronics function this way, as do nuclear plants, steam turbines, and a variety of other devices that tend to break or explode if they get too hot, spin too fast, or build up too much pressure. In most cases, this helps prevent damage to the device, to nearby people, and to the environment.
Well, add me to the list of things with a safety switch.
For some time, my irritability has been increasing, my patience has been decreasing, and my mood seems to swing with my treatment schedule.
About two weeks ago, I reached my threshold for dealing with multiple myeloma. I've been dealing with it for almost a year and a half, and I think I got to the overload point and needed to shut down for a while (which is probably good, since I hate to think what would have happened to me, people around me, or the environment if I had exploded).
Aside from one or two postings in the Beacon forums, I've done practically nothing myeloma related for the past two weeks.
I haven't followed ASCO 2012, done my normal reading or research, visited the various myeloma sites or blogs I normally do, or even updated my own blog. On the occasions my cancer came up in conversation with friends and family, I quickly steered the conversation in other directions.
Perhaps some of this can be attributed to the nice weather, biking a lot more, and being busy at work. However, the bottom line is I just didn't feel like dealing with anything related to multiple myeloma; the sense of apathy that came over me was almost tangible.
I think most of us can attest to the shock and chaos that accompanies our initial diagnosis. We have to deal with the devastating news we've received, while at the same time going from one appointment to another, getting jabbed, prodded, poked, and x-rayed, while also just trying to figure out what multiple myeloma is and then having to make decisions for treatment.
For me, that period lasted about two to three months. Life settled down a bit after that, but it was still centered around my disease, and time seemed to be measured in terms of how many days since, or how many days until, my next treatment.
I received a very good piece of advice in response to one of my previous columns in which someone recommended I set aside a dedicated time each day to deal with my cancer, then keep the rest of the day cancer-free. By and large, that advice has worked exceptionally well for me. However, for 18 months, I have still focused on it every day in some way or another.
Isn't this in some ways the definition of an obsession?
Granted there's a lot I can't change and can't avoid and consequently have to deal with on a regular basis. But what about all the time when I have a choice? How healthy is it to choose to focus on it day in and day out?
I think two weeks ago I discovered it's not so healthy for me and I need to take a break now and then – for my own benefit and for those around me. I am definitely in better spirits now.
Peace, and live for a cure.
Kevin Jones is a multiple myeloma patient and columnist at The Myeloma Beacon.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
Good for you, I think you did the right thing. I was diagnosed with mm 18yrs ago and quickly felt that burnout. It has served me well all these years to focus on the disease only when I have to- I refused to let it define me but accepted that it changed me. Balance is important but different for everyone. All the best to you.
Kevin
As always, great job. Glad to hear you are feeling better mentally. I know that you and other columnists really help your fellow patients greatly. Be it the humor, sharing experiences or advice. You all are invaluable.
Best wishes.
Art
Without going in to too much detail, I'm in a very similar situation to you and every day it changes, my disease is progressing rapidly and there is even talk of palliative care, I get one piece of bad news after another, I'm done in now, can't talk about it anymore, thanks for writing that because I so understand how you feel, and it also made it easier for me to understand why I feel the way I do right now. I don't want to talk to my friends right now, I'm just going to be quiet and let it be. love roberta
I completely understand. I have not yet hit that "threshold called Cancer" yet. I know I have this disease and I hear all the conversations of what MM is. But sometimes I just want to curl up and tell everyone that I am tired of being sweet and brave and courageous. I just want this over and done with, but I know that will not happen. So like you I take every day as it comes and depending on how I feel, I do. Just know that all of your comments and writings help me to cope and understand what I am now dealing with. Take a deep breath, shake it off if you can, cry if it makes you feel better, and know that you have Multiple Myeloma Angels all around you.
Hi Kevin, I related to your column completely. I confess that, in the midst of treatment, it is so hard to drag myself away from myeloma related blogs, etc. What helps is the fact that I have two young sons who need their father here and now. I took them fishing a couple days ago at a local pond and it was great because for hours all we focused on were blue gills, yellow perch and catfish. Myeloma was the furthest thing from my mind.
Hi Kevin I also relate to your column, This is my first time back dealing with my MM. I left many sites. Hard to talk to people even with MM. I guess i feel like they look at me like I have horns coming out of my head. Thats another story. I do enjoy your articles when I read them.
I have to leave myeloma on the back burner, I am single now (another story) but dealing with this mainly on my own. So work comes first for me and my love of the outdoors. So I focus on that. Sept I go for a 6 month check up. I really have stepped away from it. I am glad I did.
Good luck
Greg
Dear Kevin
I had to write back and say that we are not in exactly the same stage treatment wise but we are in that we are about it all the time I am sorry, I didn't really know your story. I'm in England and it's a lovely day, feeling better. I wish you a lovely peaceful day.
Roberta
Tara,
Wow, 18 years. I can only hope I have that many ahead of me. Being only about a tenth that for into it, I'm still working to find that balance, but am realizing how important it will be.
Art,
Thanks for the words of encouragement. I just try to give back a bit of what I receive from everyone else.
Mary,
I relate completely. Most days go OK, and sometimes it hits like a club, but regardless there are times when you just get tired of dealing with it. That's when some type of release is needed.
Terry, Greg,
Having something that distracts you, whether it's family, work, or recreation, is definitely a great release valve. I find it amazing how every once in a while I'll go for hours, or perhaps even a day or more, and suddenly realize I'd forgotten I had cancer - very refreshing when it happens.
Roberta,
Even though we are in different stages of this crummy disease, it's obvious we share similar feelings - this isn't a disease that comes with much good news. All I can say is my heart and prayers go out to you.
Kevin:
I am a newbie compared to how long you have been dealing with it. I am into my second year of it I guess. Not sure how long I may or maynot have had it. Diagnoised DEC 28th 2010, Stem cell transplant May 2011. Started with a stage III diagnoisis but 2nd opinion said stage I.
I only hope I can do as well as you have. Keep the fight up.
Greg
Hi Kevin,
Your blog, and blogs of other courageous MM sufferers, help me realize what similar experiences we all share. Feeling overwhelmed and exhausted by MM, and not wanting to deal with it anymore, is one of those experiences. One strategy that helps me is simply to yell and shout and express my anger at MM and my determination to keep fighting it. Growling seemed to work for about 4 months, and now I'm into a full-throated warrior yell. Sometimes whimpering is the right thing. Whatever is working for me at the moment, I just let fly in the shower in the morning (you may have to apologize to whoever shares the house with you). It seems to make the day go better!
Thanks for your blog, Holt
Hi Kevin, Thanks as usual for sharing your thoughts with us. I think that what your are doing, i.e. prioritizing your time and activities is just right! Your family, your work, your cycling...they all have to be more important in your life than worrying too much about myeloma. SOunds like you are in wonderful hands medically speaking too. I did really enjoy last month's column about the three secret agents...C,R and D, I think they were. How imaginative! Hope they have left the building too!
Greg,
There must be a bit of a misunderstanding. I am also just a year and a half into the battle with MM. Perhaps it was my statement to being a tenth as far as Tara's 18 years, meaning a bit less than 1.8 years, not ten years in? It would be nice if we all could have the longevity she's had.
Holt,
One of the best responses I see to columns (mine or others) is when people say they can relate to what's been written, and that it's comforting to know they are not alone. This to me is one of the rewards to writing a column. You're vocal approach to dealing with your anger is intriguing - I might consider it if I were alone in the house, but I don't think it would go over well otherwise.
Nancy,
Thanks for the kind feedback. I have noticed that the term "Agent D" from my previous column has also made it into a few postings in the forums - I guess a few people liked it.
Kevin,
I think we have some things in common. We both like biking, both work and both have not gone through a stem cell transplant. You are on CRD and I am on VRD. I have been on VRD plus Aredia for over 3 years (3 years and 4 months).
My question is have they started phasing back the treatements. For example with me I was originally on weekly infusions of Velcade and received 40 mg of Dex each week orally when I went in for my Velcade. I was also receiveing 10 mg of Revlimid on 21 days and off 7. After my light chains came into the normal range my oncologist started to back off the dosages. First he reduced the velcade and Dex to every other week. Then he cut the Aredia to once every 16 weeks intead of once every 8 weeks. Finally he cut the Dex to 20 mg every other week from the origninal 40mg. The Revlimid has always been kept at the same level and schedule. This past January the velcade was changed to subcutaneous but the dosage level is the same.
I was wondering if your treatment has been modified any from your original protocal.
On another subject - biking.
Dex has an impact on me. I usually get my velcade shot and 20mg of dex on Thursday afternoon and cannot ride until Saturday monrning. Even then I am not as strong as the Dex has not worn off (takes me 48-60 hours).
I also noticed that if I ride on Tuesday or Weds before my blood work that my blood counts (red and white cells) are lower on Thursday then they would be if I did not ride those days. My riding during the week is usually 20-25 miles on rolling hills at a brisk pace. In other words I push myself. I think that tells me my body takes more than 24 hours to recoup the red and white cell counts after vigourous excercise. If I lay off those days the counts are higher. I have always had slightly low red and white counts throught the course of my 3 plus years of treatment.
Curious if you tracked anything similar.
Ron
Ron,
There have been two changes in my treatment. The dex dosage was decreased from 40 mg once per week to 20 mg once per week starting with my 9th cycle. At that same time, I also went from getting Carfilzomib weeks 1, 2, and 3 of a four week cycle, to getting it just weeks 1 and 3. My CRD treatment is set to go for a total of 24 cycles, which ends this coming January. After that, they are suggesting Revlimid only as maintenance therapy, but I'm not sure whether I want to go that way yet or not.
With respect to the biking, I have noticed similar relationships between treatment and biking. On weeks when I receive the full CDR treatment (on Wed and Thu), I cannot ride hard until Sat. However, I can usually go out for an easier ride with my wife either Thu or Fri - which is usually nice because 1) my wife and I spend some nice time together, and 2) it seems to help flush my system of the poisons that were pumped into me. I haven't noticed much of an issue on the intervening weeks where I don't have the infusion, but still receive the dex, so the dex doesn't seem to affect me as much as it does you.
I have noticed variations in red and white cell counts. Some of the variation may be associated with biking or lifting weights, but it also appears to vary based on which week in the cycle it is. WBC is normally around 4.00 - 4.30, but drops as low as 2.80 - 3.20 some weeks. RBC doesn't drop as much - it's normally around 4.20, but may drop down around 4.00 - 4.10. For example, last week I biked on Mon and Tue evening (about 20-25 miles each day) and lifted weights Tue and Wed morning (labs and treatment were on Wed), and WBC and RBC were 3.20 and 3.98 respectively, so it looks like they took a decent drop.
Interesting feedback on bike riding.
Makes a lot of sense given the demand for RBC's during cycling& how this disease,MMcells, crowd out RBC in marrow. If there is a higher demand during cycling they should drop, due to demand and low levels due to disease. i.e. low RBC anemia is normal with MM.
IOW's low RBC's is why we have fatigue. So my question is do you feel more fatigued after a ride?
In terms, of Dex impact, curious...it gives u an up but not more RBC's is that the possible reason for not being as strong?
Do you also take lenalidomide on those days?
If so, the myelosupression effect (depressing RBC's) would account for not being as strong. i.e. less hemoglobin..equals less oxygenation of cells. So on days of cycling you deplete the RBC's there...accounting for the drop.
Thinking about cycling...good to know ..what others are seeing.
Kevin,
I can relate to what you are saying. My hubby (31 years&going strong) often tells me..'get off the internet'. I wasn't really listening...then
I spent a weekend at a friends home on the lake...OMG!! it was so peaceful and serene the entire weekend!! Watching the sun rise and set over the lake was just gorgeous. Moreover, I just enjoyed the still of nature..didn't touch the computer.
Know what, i came back refreshed and found it had made a HUGE difference. it is crazy how this disease takes over our lives. But 2 days of not being 'on it' ASCO, Blood articles and being in the forum..made me completely relax.
I have been so engaged and involved and that break showed me how much I need to let it go!!
You are right about the hair dryer :)...just sit back, relax, and enjoy the preciousness of TODAY!!
suzierose,
With respect to biking, dex, and lenalidomide..
I take lenalidomide weeks 1-3, and have week 4 off. I do indeed notice greater fatigue during the weeks I'm taking it - i.e., my best rides are on my week off. The dex doesn't seem to have much effect one way or the other.
Regarding taking some time off..
I actually thought about you while writing this column because I figured you must spend a lot of time researching the information you post, and wondered whether you take some time off periodically to rejuvenate. Sounds like maybe not so much in the past, but maybe it might be a good thing in the future.
Kevin,
My reaction to the Dex is primarily insomia and elevated heart rate. I am "up" for about 30 hours and then come down and am tired. I also get velcade at the same time so part of the reaction may be due to the velcade but I don't think so. As far as I can tell my only reaction to velcade is a local temporary rash around the injection site. I can ride but with the elevated heart rate I choose not to the day of and the day after taking Dex. On Saturdays we I do a group ride of 40 miles to a coffee shop and it is often a hammer fest for parts of the ride. On the weeks I don't have a treatment I am stronger than the weeks I do and ride near the front as opposed the back. After we arrive at the coffee shop we group up with our social riders and then all ride back to our beginning location at a local middle school parking lot. The ride back is at a recovery pace. Total ride is around 60 miles.
I can't say that the I notice any direct impact from revlimid. It doesn't seem to matter if I am on it or on my week off. I just don't notice any impact on my performance. Indirectly, since it impacts red cell production I am sure it has an effect. I don't really have a basis of comparison.
What I do notice is that overall I have more stamina ever since my treatments with Dex and velcade were changed to every other week.
Ron
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