Hello another month of unwanted challenges and wonderful times
Hello to tears, frustrations, meltdowns, laughs, good times and gratefulness
Hello to Life with 2 Terminal, Incurable Illnesses…
Here I am, riding on 40mg Dexamethasone Steroids, writing this post, late at night, early morning… as again… my life is just so crowded with sooooooooo many needs and caregiving, but also with many wonderful times. You don’t even want to know how late it is, rather how early it is, this 4.9.19 lol.
Crazy how my husband’s Alz situation has so taken over our life, and Myeloma is somewhat in background now. What? Myeloma in the background!! I hardly have time to focus on me, pay attention to my side effects, and take good care of me as I used to… We’ll see what my labs say in a week about this. I really don’t know how I am doing all that I am doing. Just one foot in front of the other, one task at a time, one need at a time… And it’s so bittersweet when Jim says “Thank You” for the caregiving things I do. He’ll thank me for giving him cereal and milk, saying “how delicious it is”… one foot in front of the other, one task at a time, is what I do. I’m not always a “nice” person. But I am learning fast to edit my words and what I say, constantly telling myself, “Just Shut Up Julie” “Shut Up, Shut Up, Shut Up”… “It’s the disease Julie”, “He can’t help what is happening to him, and what his needs are”…. Laundry, laundry, laundry. Living with 2 heads on my shoulders… Animal care, but lots of animal laughs too. Lots and lots of bathroom “activities”. Lots and lots of cleaning and sanitizing. Then Luci the 9 year old kitty cat throws up. Something has changed with her, and all the food I am trying, is not agreeing with her… remember when I was diapering our 20 year old cat… what a wonderful comedy show my life is! But I always remind myself, except for our incurable illnesses, most of my current responsibilities were a previous “choice”. All of the critters we are responsible for, we invited to live with us. Bodies get old and fail. Bodies get sick. Bodies need care. I, we, committed for life, human and animal. So I march forward, one chore at a time, trying to take healing deep breaths… reminding myself to just breathe…
I say myeloma is in the “background” now,… as myeloma has CONSUMED my life and thoughts for over 9 years. Side effects, treatments, appointments, researching treatment options, talking about it to anyone that asked about my situation, constant wondering Not “If”, but “When” my current treatment cocktail will fail. No I am not a pessimist, remember Myeloma is Incurable, Terminal, but Treatable… Reality is Reality. I feel so fortunate right now that my current crazy “Monday Medication Madness” of 40mg Dex steroids, 1 Velcade shot in the “belly jelly”, then 8, yes 8, 50mg Cytoxan pills with dinner, is still “working”. Add in Acyclovir daily to prevent Shingles, low dose Aspirin, a few vitamins- B12, D3, Thyroid pill, and Mepron (anti viral pneumonia liquid, when I remember to take it)… I just cannot believe how my body can digest and handle all this! All my organ status labs are good, very good according to others who’s aren’t as low as mine. Maybe it’s all the diluted (100%) Cranberry juice I drink for hydration. Yes, myeloma has taken a back seat to Alzheimers. Insane situation from every perspective. Oh wait… lest I forget… my myeloma is still over 3x the high end of normal… I’m in “ok”, not ok, status…
I still have Surprise Volcanic diarrhea, which leaves me housebound on crash days, and other days, as there’s often a lot of “Surprise” to this side effect. This all too familiar event visits me on days I think I’m ok. Or it visits me at a time of day that surprises me. So thankful I am home, when this biological surprise sabotages me. I was out in the horse arena yesterday, lovely warm day, soaking in the rain nourished green trees, green hills and the flowers bursting out, when suddenly, and yes I mean Suddenly, it’s wow!… get to the house now Julie! I “barely” made it! I’ll spare you the details. That’s the suddenness and surprise of this crazy cleanse side effect. No cramps, no pain, just total Urgency. It’s the “cleanse” non cancer patients “pay for” lol!
How can life be so awful and wonderful, at the same time. Why did we both get so sabotaged with such serious illnesses. Yes I always knew Jim would age faster than me, being so significantly older than me, but seriously Universe… all he wanted to do in his retirement was walk without pain, garden our property, do healthy outdoor chores, enjoy the animals and his family, etc. His life is completely stolen from him physically and mentally, with moments of clarity here and there… Our life is a bad movie, that I just can’t believe I am unwittingly participating in. But again… I have soooo much to be thankful for, in others areas of my life.
My labs from Sunday show I am borderline “Neutropenic”.
WBC = 2.4
ANC = 1.2
RBC = 3.5
HGB = 11.7
CREATININE = .65
GFR = 97
ALT, AST, AP, BILIRUBIN = all quite low (low is good in this case)
I take the Myeloma specific labs later this week, for my Dr appt April 15th. Can’t believe how fast the weeks go, but I am glad they are, for multiple, complex reasons… but in this case, so I can see my monthly cancer status. How crazy this 9 year journey of living Lab test to Lab test is, just to stay in touch with my survival status. Currently my IGA “is only” 3x the high end of normal” lol, at 1260, (normal rage is 70 – 400). I didn’t get around to taking screen shots, that’s why I’m reporting all this like this. (Booo on Kaiser’s website “upgrade” view, as I have lamented previously.)
I mean seriously, how nuts is it to live like this, wondering when myeloma will overpower the treatment, and we have to race to figure out the next “smarter than myeloma” treatment plan. When I write all this, I just smirk and shake my head, how UnReal all this is… what the heck happened in my life… oh well… onwards, one challenge at a time…
In in between all this medical nonsense, chaos and unbelievable physical and psychological challenges… our son Scott turned 33 and our daughter turned 31! We managed some wonderful celebrations, that I never thought either Jim or I would be here for. How “lucky” are we!
Here’s a slice of the happy side of our life: