Hello All! I have been battling computer issues this weekend, along with unexpectedly difficult dex-related side effects. Life can be challenging!
I haven’t been able to solve the computer glitches (I’m using the laptop I use when I travel to write this) but the dex driven inflammation that was giving me fits Saturday has improved markedly today.
Pattie and I were taken aback by the way my body was reacting Saturday. My belly was distended, both knees swollen, my bad right hip even more painful than normal and my back was killing me! I hurt more yesterday than I have for years. For those of us that experience chronic pain, it can really wear on you 
mentally and emotionally. By the time Pattie and I joined her family for her niece’s birthday gathering, I was spent. I almost fell asleep at dinner–and I love to eat!
Still, as difficult as it was, I wouldn’t have missed the party for the world! A young lady’s 9th birthday is an important event. Happy birthday, Marley!
I don’t know about you, but I always find it easier to deal with pain when I understand why my symptoms are occurring. In this case, I believe I had experienced a perfect storm of dex-related side effects.
I understand why most myeloma patients hate dex. Difficulty sleeping, mood swings, anxiety, irritability, muscle wasting and stomach distress to name only a few. But for someone like me with a lot of bone, back and joint damage, dex can be a good thing. When used judiciously, dexamethasone and prednisone can reduce inflammation and significantly reduce pain. I also get a jolt of energy from dex. It often acts as an “upper” for me. Since I tend to be so driven and on-the-go, when I take a large dose of dex it’s like giving speed to a wound-up junkie! I get a lot done, but the crash that results can be tough to take.
When administered in large doses all at once, I never know what I’m going to get: demon dex or more positive benefits. For me, usually I get a lot of both.
In this case I felt better for a couple of days after I took my 20 mg dex, experiencing less pain and able to push myself more on those two days. We were preparing for our subdivision’s yearly community rummage sale; climbing up into the attic, moving boxes and furniture, setting-up tables and and putting-up signs.
But what allowed me to be more physically active than I normally would or could be jumped-up and bit me Saturday. So as the dex began to wear off, I was sore and fatigued.
Remember how I wrote “I never really know what I’m going to get: demon dex or more positive benefits?” As has often happened in the past, I got both. I’m good with that–all part of my new normal. What I wasn’t expecting were the bathtub-full of inflammation I described above.
Despite having trouble sleeping for the third night in a row, a little rest and some well placed ice on my knees, back and hip did the trick. I was able to walk with Pattie and Finnegan (our Island Dog) today and enjoy a beautiful spring-like bright, sunny day.
Still puzzled as to why 20 mg of dex would hit me so hard (I had been taking 40 mg on and off for years), Pattie reminded me that I had retained water and experienced excessive inflammation at the end of my fourth Velcade/dex cycle last month, too. All dex? Or maybe some end of cycle peripheral neuropathy attributed to the Velcade, too? Guess I’ll never know for sure.
This is an example of why keeping a journal is a great idea for any cancer patient. Pattie did it back while she was undoing surgery more than a decade ago while successfully battling cervical and uterine cancer. Later, when she needed surgery again to remove her cancerous ovaries, she had a benchmark to remember what to expect and how she felt. It also reminded her that recovery would soon follow. Too bad she then endured a brutal six month cycle of chemotherapy for the second go-round. Tough to prepare for that!
Need a bit of hopeful inspiration? Pattie has been cancer free now for over eleven years! And her difficult cancer journey has helped make her an amazing caregiver, too. I love you, Trish!
Feel good and keep smiling! Pat
March 10th, 2013 at 4:16 pm
Demon, what a great name for DEX. Let’s see, you did death, now demons, good thing you included that 9 year old princess so we could have some sunshine.
Hope you are feeling better soon, good for you that you keep a sense of humor.
March 10th, 2013 at 8:58 pm
One of the chapters of my first book is titled “Demon Dex.” I first heard it described that way at a IMF Patient/Family seminar in Minneapolis two months after I was diagnosed in 2007. No worries–I’m not turning dark!
March 11th, 2013 at 12:30 am
Hi Pat!
I do not feel you are dark. Just realistic. Your columns are really of service. I think about death too. I wondered how most myeloma patients die and asked my physician. I did not get a reply. Simply was told, I did not need to be thinking along those lines. But I was curious wondering what to expect. The most I am able to read or hear from others is that usually it is pneumonia?
What have you heard or seen? I do not even know what you feel when you have pneumonia in your last days. Are you in pain? Are you simply having difficulty breathing? Just curious is all. And I think it is good to prepare. I want to know what to anticipate.
Do I want to believe life is going to be great? Do I want to believe that I am going to keep the myeloma at bay? You bet. Yet, I understand the word incurable. It is simply a matter of knowing..if I go, how will I most likely go? Haven’t had an answer to that.
I do understand why you write and think about it and I do not feel you are dark. I also recognize that each person had their own journey and what they want to focus on. Realities can get in the way of what we tell ourselves!
Positive thinking is what keeps us going but reality is planning and doing all we can to thrive as we survive. I recognize that discussing death is not what many want to think about. But I don’t see exploring the topic as dark. It is what it is. No different than how we save money and plan for days that could come when we are financial unable to support ourselves in a manner we are accostumed to or where we want to be. But like all things that are bleak that may occur, planning is a good thing.
So, keep doing what you are. Know there will be criticism. But we all feel the wind at our backs and face the issues differently
Thanks for having the courage and self-assurance to broach a topic many would rather not.
It’s OK!!
March 11th, 2013 at 12:53 am
Actually, Pat, I wouldn’t mind if you DID move a bit toward the dark side…
To tell you the truth, sometimes all of your sunny optimism can wear on guy just a bit! 
Just kiddin’ of course…I look forward to my morning cuupa and your blog to get my day jump started…don’t know what I’d do without either, frankly!
And by the way, you know your most recenbt TMB column was well-recieved by at least 80% of the readers, so I’d say the “vocal minority” were more of the Woody Allen crowd that would likely agree with his famous quip, “It’s not that I’m afraid of dying…it’s just that I don’t want to be there when it happens.”
Best,
Steve
March 11th, 2013 at 8:49 am
Thanks! Yes, my recent column in the Myeloma Beacon stirred-up some controversy. I’m OK with it when readers don’t agree with me. But I appreciate the love!
March 11th, 2013 at 7:46 pm
I’m pleased to find a topic on which Suzierose and I can correspond harmoniously.
I, too, asked one of my consults about dying from the disease. This doctor didn’t have terrific bedside manner to begin with (he flat out told me I would be very unlikely to be around for my daughter’s high school graduation when she was six). So I knew he wouldn’t hold back.
The most likely cause of death is from an infection that the body cannot fight off. White counts try to rise but the system can’t do it. Temperature rises and eventually cannot be controlled. I assume this is accompanied by fluid in the lungs and difficulty breathing. Eventually the patient slips into a coma and then we’re off to find the answer to the big riddle, so to speak.
I asked him directly “will it be painful” and he said “no, it shouldn’t be.”
That was the last time I thought about dying from this disease, thankfully…I don’t think it does any good to dwell on it.
I did, however, have a pretty bad infection that I had trouble fighting off during chemo, and I was on high dose Dilaudid with oxygen to help me breathe for a week or so. It didn’t hurt. You sleep a lot. I wasn’t that close to death but I suspect with pain control, eventually there’s little difference between being loopy on high-dose synthetic morphine versus the actual coma that you’ll be in once your system decides it’s time to go.
My point being: it didn’t seem that bad.
Death sucks. We’re all gonna deal with it. Lying in a hospital bed, doped up to the point where you feel no pain, is better than falling into a hay-bailer or being set on fire, so…there ya go.
Happy happy happy! 
Seriously, though, I think it’s something that we must come to terms with, beat decisively by refusing to let it dominate our thoughts or actions, and then move past.
All that said, put it out of your mind, everybody, and let’s keep kicking this stupid disease in the teeth while they continue to research the cure.
March 11th, 2013 at 11:39 pm
Most caregivers of those with myeloma report a rather peaceful death. I have visited several patients right before they passed-away. All but one seemed ready to go. One in hospice fought it to the end. I think the whole thing sort of “snuck-up on her” and she simply didn’t want to die. My final days in hospice? Hopefully writing, describing the experience, laptop resting on my chest. With any luck at all it won’t be anytime soon!
March 12th, 2013 at 4:48 pm
I have had the unfortunate experience to witness the death of both of my
parents from myeloma. My father battled myeloma for 13 years and experienced a lot of infections but eventually died from kidney failure.He died relatively pain-free. My mother was diagnosed 14 months after his death,survived 5 years and died 3 months ago. She did very well until the last 4 months of her life. Her last blood test suggested that she had developed plasma cell leukemia. Basically her hemoglobin and platelets crashed. During her final months she experienced extreme fatigue and then bleeding issues. Pain was not an issue.
It was hard to believe that this was the same disease in both of them.
The initial symptoms, course of the disease and final stages and cause of
death were totally different.
The only thing I can say for sure is that hospice was a godsend.I wish we had used them earlier in the process.
March 12th, 2013 at 8:05 pm
I’m so sorry for your loss. What a horrible coincidence, Sybil! But maybe not. Any shared environmental exposures that might help explain this? I’m not a statistician, but I believe the odds are off-the-charts this would happen. But for this to have happened so close to together. It must have been so hard…