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