And so IT continues...
I'll be back with an update... GI sabotage...
Yes Life, You Never Let Me Be Bored!
9.18.17 Update:
Never ever, stop laughing at life… I have to, to survive...
This morning, I woke up to a “kitty mess” in the “Cat Sanctuary”. See, all my
life I wanted to eventually open up an animal rescue. It would be a combined
animal and human rescue. A rejuvenation, healing center. Humans healing
animals. Animals healing humans. But life moved busily forward, and I devoted
my life to my family, my personal menagerie of rescued creatures, my career as
a college counselor, and just living life… until December 30, 2009, when I was
diagnosed with Multiple Myeloma. Life as I knew it, changed dramatically and forever, when I
came face to face with cancer and the realities of it’s life stealing elements.
But life continued, altered. Evolved, different, rearranged.
I
have always had a moral and literal “forever obligation” to any creature that comes to
live with us, either by selection, adoption, or dropping from a nest. There are
those days now, especially treatment and steroid crash days, where I think I just can’t do this any longer. The chores, the messes, the needs of everyone here, demanding me, needing me,
all the while, me dealing with my own yucky physical side effects that sabotage me
so. The caregiving to others, when I need the care given to me, is often overwhelming. But I go deeper within. I go beyond my own suffering and look from the perspective
of those that have “not chosen” to come into our lives, and I know I must carry
on, carry forward for them, no matter what, no matter how awful I feel.
Today I was greeted with a very unappealing mess in the “Cat
Sanctuary”. If you have cats, you know what I am referring to. If you don’t,
well… put verbally sanitized… cats meticulously groom themselves. They
develop “hair balls”, and their biology then “gets rid” of "it". Today, 2, maybe
all 3 of the cats, decorated the floor with their biology. Additionally, our 20
year old disabled, palsy, somewhat paralyzed, mentally crisp, quite amazing
cat in diapers, greeted me with his “mess” too.
I dreaded going in there. I didn’t feel like dealing with
it. But I knew I must. "Better get it over with Julie", I urged myself on. "Remember… you always
wanted to open up an animal rescue sanctuary". "Well, here you go. Just a very small
reminder of what a large operation would have been", I laugh. I laugh at my
life. I must laugh at my life, or I’d cry each day. Can’t cry. Must move
forward every day. What happened to my life? Why was my life stolen from me?
"Carry on Julie, one foot in front of the other", I continually admonish myself. "Move away from your woes,
your side effects, your diagnosis, you have so very much to be grateful for", I reprimand myself. "Things could ALWAYS be so much worse", I swallow the lump in my throat. And it IS for so many I know.
Myeloma incapacitates so many. "You are not Julie. You have so much to be grateful for", I discipline myself!
Charlene- shelter rescue at 12 years old
As I look at the mess on the floor, in the litter box, on my senior cat’s
diapers, I glove up and get to work. And then another kitty starts to heave! Another
lovely hair ball present for me…. I laugh… I shake my head in disbelief of what my life has become on so many levels. I laugh at what I got MY SELF in to years and years ago. They cannot
help their situation. They are cats. They haven't a clue about cancer and how yucky I feel. I am human. I can process all of this
mentally. Forward Julie... I get to work cleaning. I laugh. I process. I shake my head as all of
this represents so much more than what it is literally.
Luci- road rescue at a kitten
I am sick, I have incurable cancer, but thankfully I still can care for myself. I
am functional. I still have choices. The most dramatic awareness and reality check
for me is my senior cat in diapers… I am not, yet... I remind myself always, fearing for the future. My husband is not. We are still
“independent”. Our physiology has not stolen our ability to take care of our
basic needs. I am grateful. I smile. I pet the kitties, and laugh. They purr
their appreciation to me. I clean and clean. I change his diaper. I clean and
clean everywhere. I am grateful. My senior cat puts it all in perspective for me.
Binkx- now 20, shelter rescue in 1997
Last week I had my status check up Doctor appointment on Tuesday September 12. Most of the news was good. Protein Electrophoresis, M Protein, M Spike is still "undetectable". Results show "abnormal", but fortunately, that factor is still being suppressed by the Darzalex, Pomalyst, Dex steroid combination.
However, my IgA crept up a bit and that is worrisome. Especially since I began the new "once a month" dosing protocol, as directed by the Darzalex pharma developer. Confusing, but the established regimen is first, every week for the first 8 weeks. Then every other week for the next 8 weeks. Then on to monthly, which is where I am now. My type of "high risk IgA" myeloma treats fast, but also mutates fast and becomes refractory to each chemo, immunotherapy after about 9-10 months. So I am wary that the myeloma cells are beginning to overpower the healthy fighter cells, since they are not being continually bombarded... we'll see what happens...
This past week, I only took 12mg of the 20mg Dex steroids. I was on my Pomalyst break, and also on the Darzalex break, so I thought, "let's give this ol body a little further break". Felt ok on Tues and Wed, then suddenly late Wed night, I developed an incredible headache. A killer headache. Not a migraine, as I've never had that torture, but a crazy slam me in head with a brick headache. And that lasted through Friday, and into Saturday, when I woke up. I canceled all the plans I had, as I also began lovely lower GI distress. Strange how recently I've been having my ol surprising volcanic diarrhea again. Hmmm...Killer headache, diarrhea again... what's going on I wondered.
Slowly, with the help of Tylenol and Advil, my headache subsided. The GI stuff calmed down, but I was still unsure about what had happened to me. Thought I was getting a bug, but it wasn't. I just couldn't identify what happened. What a way to live. Feeling "sick" 4 to 5 days out of a 7 day week is pretty frustrating. Never knowing what is treatment related, cancer related, and what is an "illness" is crazy making. Feeling well is rare, and so surprising to me... But forward I go, as I want to live and have fun. I want to do whatever I can, on the days I can. So on Saturday, I uncanceled our canceled plans, and off Jim and I went to visit a family friend we hadn't seen over a year. I was worried about unexpected side effects, but took the risk...
Can you guess what happened? We had a lovely visit. Went to this beautiful "Lake Shrine Retreat" park, which was so peaceful, lush and visually nourishing. Next up, dinner... I mentioned to Linda I felt like Italian food. She knew of a wonderful neighborhood gem. We had a lovely time. Amazing food. Warm conversation. Can you guess what happened? I felt fine during dinner. Enjoyed lots of bread, olive oil and balsamic. Yum! Chicken Parmesan with sautéed spinach. Yummy! Can you guess what happened? We chatted, caught up from years past. I was confident I'd be fine. Can you guess what happened? We visited some more, lingered, said goodbyes, and headed for home. Can you guess what happened? Traffic was cooperative, no problem. Then close to home, I felt the ol telltale slight GI rumble. I ignored it. Lower GI stuff hadn't been an issue for me much in the last few months. I thought I was imagining it. Just a random fluke. Can you guess what happened?... Yep........... I BARELY MADE IT IN THE DOOR, and I haven't left the bathroom much since then lol! Except for lunch today, as I tried an outing again with a girlfriend I haven't seen in months, which had been planned for months and months. I almost to canceled, but didn't, as I was sure Saturday was a fluke, sure I was just fine. Can you guess what happened? Yep, same story!
So it appears my unpredictable volcanic GI side effects are back. I cannot believe my recent, scary close calls. Such a wake up call to me that I really am not a well person, and I can't go out and about freely. I must accept cancer and treatments are constantly hovering, changing my system, ready to sabotage me. Hello Imodium again, and hello fearful eating status again. I just cannot believe my life. Just when I think things will calm down... ha! Not a chance, myeloma's mischief is always lurking.
Thank you for reading and caring about my crazy myeloma journey!
Ohh.. I hope you're ok..and side effects are minimal.hopefully positive results. GI issues getting difficult for my husband.. BRAT diet. chicken and baked potato..rice Krispies for fun!! been his mainstay..he's holding it together!! never ending fatigue.think of you often. Always read your blogs..thank you .. your efforts appreciated and information so important.. .Karen
ReplyDeleteAlways in my thoughts and prayers.
Hi Karen! Thanks so much for checking in and being such a loyal blog friend :))
DeleteYour hubby and I are twins with our side effects. Ugh :(( Tell me again which treatment he is on. Is his GI stuff "predictable" or sudden, surprising, and OMG... am I going to make it... type lol? Hoping you 2 can get out and about enjoy life. I try... sometimes it works, sometimes not lol. Love and supportive hugs your way Karen xoxo
Julie, For GI issues have you talked to your doctor about Questran (cholestyramine)? It has helped me over the years on various treatments (especially Revlimid for me - yuk). I know many myeloma patients have found some measure of relief and more GI predictability when taking Questran. Hang in there.
ReplyDeleteHi Anonymous (or one my pals that forgot to leave their name :))
DeleteSee this GI stuff with me is so unpredictable, that I really don't need medication daily (yet!). And actually, don't we all need "cleansing" lol ahaha! Plus, this situation is new these past several weeks,... actually now that I really think about it... since I began the monthly Darzalex regimen. So this leads me to think that Darza "corked" me up, or helped me be more "normal", and now that I'm not receiving it regularly, perhaps I am back to the GI surprises.
So my routine is to eat... see what happens... clear biology... then if it gets "ridiculous" I take Imodium, and that works like magic for for me! But since things are a changn... and if it does go down the volcanic road again (like on Revlimid!), then for sure I will inquire about Questran. Thank you so much for the recommendation. And thank you for reading and commenting!! :))
My 'volcanic; GI stuff started in my last 2 years on Revlimid. ( I was on for a total of 5 years). I kept telling my oncologist about my diarrhea problems but he never really responded. I unfortunately had 2 incidents where I DIDNT make the bathroom so not fun. Then I read on the Beacon about Questran and got the prescription. It was a miracle worker.
DeleteJulie, you don't have to take it daily. As a matter of fact I don't anymore since on not on chemo. BUT, when I'm going out to eat or when we went camping in Tahoe, I took it every Day so as to NOT have an incident. So check it out. I only take a teaspoon not the dose on the package. It has been a miracle worker for me. It's actually just binding the fats in our absorption and keeping the enzyme which causes the instant diarrhea to happen in check. I cannot speak highly enough about it. As a matter of fact, we went on an over night to the Sierras and for sure I took it both mornings to check things in check.
Anonymous, I'm with you, it has been a miracle worker, read my reply to Julie!!
DeleteWhat a great story and explanation Christina! Thanks for letting me know. Yes Rev sure does a number on us (lol no pun intended at first lol). It's just so unpredictable with me. Haven't had a problem since I wrote that post. So weird. Imodium really does to the trick for me, and like you, I always take less then the required dose as I don't want to get corked up. But I haven't had to use it for a while now. So far so good, but I had my Darzalex infusion today, with Dex steroids, so I should be ok tomorrow... but the crash creeps in slowly tomorrow, thru Thr, Fri, Sat? I am so happy that you are stronger than MM now, and your body is your friend! Hope it stays that way for your for a very long time, or to infinity :) Thanks for your comment! xoxo
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