It's Goodbye October, Hello November!
Inching closer to my 9 year Myeloma Diagnosis Anniversary! Wow! Becoming more and more surreal, unbelievable, crazy, amazing that I am still here!.
I just can't believe that 9 years ago this time
Myeloma was RAGING inside of me, and I didn't know it yet.... My IGA was close to 5800 (normal = 70-400). My M Protein was over 4.3 (normal = 0) and my first Bone Marrow Biopsy showed 70% cancerous myeloma plasma cells! And here I am to talk about it, almost 9 years later, having survived more rounds chemo than I can count, a Stem Cell Transplant, and all the 9 years of side effects I have endured! But I'll reminisce about all of this soon...
Because, since my last post, the Adventures of Julie in Myelomaville continue :))
1- Yes I bit the dust and got sick
, but thankfully only a lousy head cold. Seriously, how amazing is that! I go on a Cruise with 2000-3000+ humans, and only get a lousy head cold! Guess those magical Zarxio, Neupogen WBC immune system building injections gave me some back up power to fight off all the potential nasty cooties out to get me! I am very cautious and careful though, and incessantly wash and sanitize my hands, myself, those around me, my living space, etc. I tried very hard to not let anyone touch me, hug me, and I never shake hands, I use antibacterial wipes to touch most anything public, and I brought my Mint Isopropyl Alcohol spray to sanitize and spray anything and everything and everyone! My finger nails even turned a lovely light green from the the Wintergreen color LOL. Wow, I sound like a freak... but it worked... I did not get any deadly viruses, bacterial yuckies or pneumonia, etc...
2- Next I agreed to begin the Vintage chemo Cytoxan with my Velcade and Dex steroids
... only I am going to Cheat... ssshhhh don't tell my Dr yet, but no way am I downing 8 frikn Cytoxan pills at one time! I asked her for a lower dose, and she was kind enough to lower the standard of 10 Cytoxan pills to 8, but after I picked up the Rx, and saw them, and began to visualize ingesting all of them at once!... I'm Helllllllooooo, Noooooo, I'm not going to put all those in me at once, risking a nasty GI backlash! I know, I know, I'm a Cancer Patient with Incurable High Risk Myeloma, and I should be on board for high dose- kill off those super strong myeloma cells trying to kill me!! Well, yes, but No! At this point in my life, and treatment.... Quality of Life, and lessening the chance of feeling gross and sick, is my main priority! Yes my myeloma is 4 Times the High End of Normal right now... but sorry, I just can't stand the idea of getting grossly GI sick. See way baaaaaack in June 2010 I had "that reaction" to IV Cytoxan, and uuggghhhh, nope, no thank you... not again, if possible. So Tomorrow Night, Oct 29, after taking 40mg Dex steroids in the morning, my weekly Velcade shot in the afternoon, I will very tentatively, unbravely take 4, yes four of the 8 Cytoxan pills!
Hello pretty blue Cytoxan pills!
Blue just like my lil blue Bug...
Would you take 8 or 10 of these at a time?
I'm also armed with Zofran, but I don't think I'll "pregrame" with that just yet, as I'll be on the high dose, 40mg Dex steroids, and that should help with any nausea, right?? Suggestions please!!!, if you've done this combo, which most of the Myeloma patients have, early on! Why didn't I?? I was concerned about all the warnings from myeloma patients about BAD Neuropathy from Velcade, so I skipped over to Kyprolis, and never had the Cytoxan pills added in, as Kyprolis Dex worked for me for about 10 months, then Darzalex, Pomalyst, Dex worked for me for about 18 months, so here I am, going backwards to meds I skipped, before I'll do clinical trials, CAR T, etc. Yes, no matter how "bad" my situation becomes, Quality of Life is first and foremost to me... since what's the point of treating myeloma, if I'm so sick all the time, I'm not living. Isn't the point of treatment to give a cancer patient their life back??? I've been doing this for almost 9 years now, and for so many hours, days, weeks, months, etc, my life has been so limited by side effects, I learned that for me, the treatment has to make sense... kill the cancer cells, but let me see the sunshine too!
So after the cruise, and getting sick, the pressure was on to get well fast, as I had the honor of being selected as Opening Ceremony Speaker for the Doggie version of the American Cancer Society's Relay For Life. Yes, "Bark For Life" is a similar theme as Relay For Life, but the focus is Dogs as our companions, our "support animals", and how they help us emotionally and psychologically. Here's the event in pictures, and I will be back to narrate the details later, as so much has happened, I'm so exhausted :)) I've done this event for many years, but this year was super special, since they asked me to be Opening "Barker", Speaker, and my Team- Mutts For Myeloma, was the Grand Marshalls, leading the doggie walk! So fun, so cute, and such a happy, positive event! Go Team Mutts for Myeloma!
I made these hand held signs for our Team members to carry
How adorable is this!
Special parking privileges!
There I am speaking
Sharing my Crazy Myeloma story
And we're off!
Mutts For Myeloma
Leading the Pack
Go Team Mutts For Myeloma!
How I did all this... I don't know
But 1 lil 4mg Dex steroid pill did help!
My hubby Jim is having such mobility issues
Best Son Ever Scott, pushing Jim for the Walk
Best pals ever!
Susan and our Hanna
Me and our crazy puppy Jack
And Daughter Alissa with her Nala
Super friend of Alissa
Kristy, and her adorable kiddies
Alissa and Susan
Jack, Nala, Hanna
David and Debbie with doggie Abby
So happy you could come!
Jack, Nala, Hanna
Susan and Hanna
Scott's GF Ashley
with her adorable Pugs
Knuckles and Porschia
The Crazy Pack
Go Doggies enriching our lives!
Kathy's sweet Portia and Alissa's Hanna
Portia and Porschia!
How Lucky Am I!
This Is Why Quality of Life is so very important to me! I could not have done this event if I was feeling GI sick from chemo side effects. Been there, done that for so many years on Revlimid with "volcanic diarrhea". It was challenging enough with this event so early in the morning, as I never feel well in the early mornings! And I'm still challenged with all the bone, nerve, leg, muscle, etc pain from the myeloma tumors, plasmacytomas, lytic lesions, holes, etc, whatever the heck they are... so I took one 4mg Dex steroid late Friday night, so I would feel less pain, and also have the energy to get up early, function and be able to give my speech about my life, myeloma, and the importance of doggies, pets, animals in my life. It was a challenge to get me, my disabled hubby, and the 3 doggies all at the park by 8am! Thankfully my amazing family, and Team Mutts For Myeloma were there to help when we arrived. And did you see the pic of my reserved parking space? So Adorable!
But later on that evening,
I decided to do as my Drs and Nurses always say:.... "Go To ER! or Urgent Care! if you have Pain, Fever, etc... So I went, as the pain in my lower back, hips, pelvic area is erratically painful, with different type of pains all the time. So I thought it best to get an updated xray, as I've had a few crazy "slip, trip, ALMOST falls. Ever since my July fractured RIB, I've realized 9 years of crazy Ouchies, may have been other fractures, sprains, bruises, bone involved issues, that I ignored. So I went, was seen by a wonderful, thorough Dr, and the good news is... no new fractures, just all my myeloma plasmacytoma tumors, lytic lesions, etc affecting my nerves, muscles, etc.... Hmmmm ya think I should do the Radiation??? I think I should, as better to be ProActive, than ReActive, right!! And when that pain comes.... OMG... it's truly unbearable... especially since it's at night, when I've stopped moving around... Crazy stuff!
And I'm still laughing about the amount of Meds I'm needing to take to keep me ALIVE! Here's to Velcade, new Cytoxan, Dex steroids, Mepron/Atovaquone, Acyclovir... just to name a few LOL
Welcome to my life :))
40mg Dexamethasone steroids- 10 pills
400mg Cytoxan chemo- 8 pills
200mg Acyclovir- 1 pill
and other Vitamins, pain meds, Thyroid daily pill....
Hello weekly Velcade shots
Thank you for checking in, and caring about my myeloma story! Hoping you are doing well, and have figured out how to bring your blend of Quality of Life into your Life. It's different for all of us, and I just want to be able to feel less pain, less side effects, and be able to do a few social-family events here and there. LOL---- this October was of course and exception... I usually don't have all these activities at a time... well maybe I do... thinking back to some of my posts :))
Be well, stay well, and find that which gives you joy and purpose!
Hi Julie. Glad you had no new breaks. This is Jewell. I told you last time I would let you know what happened at my next appointment. My Kappa light chains are on the move, so my doctor is raising my Revlimid back up to 25 mg - 21 days on 7 days off. Hate this. And adding 32 mg dex weekly. Ugh!! Hopefully this will work. If not he will add Darzalex or one that is similar. It is so weird because my blood work shows no monoclonal bands, but the pesky little Kappa is not cooperating. I am so glad that you got to enjoy the cruise and didn't get a nasty virus. Til next time.ReplyDelete
Hi Jewell :)) Thank you for your update! Wow, go you for being able to tolerate 25mg Rev! I never got beyond 10mg, 15mg alternating for the 21 days. I sure hope you do ok on this, and Rev doesn't give you too many lousy side effects. For me, with Rev, the main insane side effect, was the "volcanic lower GI surprises", and the extreme fatigue.Delete
So crazy how MM morphs differently for all of us, with you Kappa Light Chains, and me IGA and M Protein.
Hoping this new option pummels those nasty MM cells for you asap!
Thank you for following my story and letting me know how you are Jewell :)) xoxo