Hi Friends and Loyal Followers :))
I’ll have a medical update for you tomorrow, as I have a phone appt with my Dr in the morning. Some of my labs have come through, and I’ll post screenshots of those tomorrow, after I discuss the results with my Dr. SEE BELOW :))
I’m still processing my recent Pet Scan… will ask my Dr more details tomorrow
I did a follow up Xray on my leg bones, and see what she has to say about that
I didn’t do the follow up MRI on my Liver, as I am concerned with the Contrast used, Gadolinium. Have any of you had any negative reactions from it? I remember reading something about a specific concern for Myeloma patients, since it’s processed thru the Kidneys?? Let me know if you’ve had a MRI with the Contrast and if you had any Reactions!!!
Or just Google Gadolinium and see what comes up. Kinda scares me. And especially with all the chemicals I am putting in my body weekly, that’s a lot of STUFF to process out. Again, I recall something about a warning or caution for Myeloma patients, because of the Kidney issues…
Ok, I’ll be back tomorrow, June 10, 2019 with a more detailed update.
Thanks for checking in, reading and caring as you do!
Here’s my recent labs and Myeloma status:
IGA holding steady! Just up 50 points
M Protein holding steady too
Just up a few points from last month
Beta 2 down a bit
And for the first time in a long time
ACTUALLY in the NORMAL range!!!
Fighting Myeloma is crazy. Has just taken over my life mentally (aside from my husband’s tragic Alzheimers decline). So many say cancer is not them, they “just have cancer”. Cancer does not define them. Cancer does not consume their life. Cancer is just a bump in the road. Cancer is just a disease, it is not them. Well, for me, living day to day, week to week, month to month with my cells trying to kill me… well that consumes me, along with weekly treatments and daily side effects. How can this monster not consume my life and thoughts. My body is trying to Kill Me!
I put “healing poison” in me weekly! The myeloma cells are trying to kill me, and the chemo treatments nearly kill me. How can this not be my life, my thoughts? If I don’t treat, I die. Simple as that. I have a very “aggressive” type of Myeloma. I don’t even get chemo treatment breaks anymore! How can this not consume my thoughts, my plans, my feelings?
See, Myeloma is so different from so many other cancers and cancer journeys… BECAUSE MYELOMA IS INCURABLE. Yes that’s the biggest, hugest, ginormous difference. Myeloma IS NOT curable. I don’t get to move on, I can just keep moving forward.
It’s a different battle every day. Monday = 10 steroid pills, 1 Velcade shot, 8 Cytoxan pills. The act of taking them, going for treatment, hearing about all my labs, Pet Scan results, then eating so I don’t get sick. Trying to hydrate properly. Trying to consume things that taste ok with Metal Mouth. How can cancer not be me? Fighting myeloma has completely changed my life since Dec 2009. This is my reality. Treat, Treat, Treat. Side Effects, Side Effects, Side Effects. Labs every Sunday, for treatment on Monday. How can this not be my life. Then the side effect Crash on Tues, Wed and into Thurs, and sometimes Friday. I basically only have Sat and Sun somewhat ok. And the Fatigue. OMG the ever present FATIGUE… Yep, myeloma owns me. Because Myeloma Is Incurable. Simple as that. It owns me and owns my life, if I want to continue to Fight to Stay Alive.
In between Fighting, I do have a little Fun- when side effects let me.
Attended Kaiser’s Cancer Day, and had a wonderful time hangin with my Chemo Lab staff, Outside of the chemo lab!!
My Chemo Lab buddies
My amazing Chemo Lab Pharmacists
Always answering my endless questions
More Chemo Lab buddies
My Amazing Doctor
Saving my life, one prescription
one appointment at a time
My ever loyal personal Nurse
The wonderful Chemo Lab Crew
Couldn’t Fight this Fight without all of them! Endless thanks of appreciation and gratefulness!
And lest I forget to mention…
I asked my Dr additional clarification of my May 2019 Pet Scan. There’s just so much Anatomy and Physiology to understand. I read and reread the report, but it’s just so much to absorb and process. So I asked her about the comments where it showed additional metastasis on the ribs, pelvis, femurs, tibias.
I have a “soft tissue growth from the anterior aspect of the right third rib”. “Expansile lesion measures 3.9 x 3.3 “Highly concerning for worsening of metastatic malignancy”. “Overall significant progression of hyper-metabolic widespread osseous lesions, such as significant interval worsening of hyper-metabolic bilateral rib case lesions, including masslike soft tissue thickening arising from right third rib lesion”… So yes, I have a “soft tissue Mass” on my Right side ribs. Lovely. Thank you myeloma.
Also, “right proximal tibia shaft lesion”… “Left femoral plateau… significantly larger elongated shape within the mid left tibal shaft”… “New hypermetabolic right femoral plateau…”
I also have something “between hepatic lobes”… “within the right hepatic lobe”… “low density lesion of bilateral hepatic lobes”… “There is a curvilinear pattern of mild uptake between hepatic lobes as well as adjacent focal uptake within the right hepatic lobe near porta”… “Limited evaluation of unenhanced CT” … “for better characterization further evaluation with contrast imaging/MRI may be of value”… This is what my Dr wants to have me do the MRI with contrast for. Still thinking about that…. ummm…. no, at this time… maybe in a few months… Gadolinium… hmmm…. noooo, not at this time. I don’t need any additional DRAMA, thank you Myeloma…
Whew… that’s a lot to take in… and that’s only a portion of the report. I think I may have posted a screen shot in another post? Just had to type all this out, it helps me to process it… I still feel like I am reporting in for someone else, not me. I live such a 3rd person life in so many ways… my life is the Twilight Zone. So Out of Body… so much to process and comprehend.. daily, weekly, monthly. One foot in front of the other, one day at time, one challenge at a time, one treatment at a time, downing 10 steroid pills at a time, bracing for belly jelly shots one jab at a time, downing 8 Cytoxan pills at a time… really? can this really be real?
Oh, did I mention… maybe more Radiation… or Metal Rods and screws. Bionic metal lady, here I come. Noooooo… not any time soon, thank you Myeloma.
But serious THANK YOUS to my AMAZING MEDICAL TEAM, saving my life one treatment at a time, one scan at a time, one visit at a time. I seriously wouldn’t be here without my incredible medical insurance… yes, that I pay for, worked for all my life. So grateful. Thank you everyone saving my life. Medically, emotionally, family, friends, and all my virtual friends supporting me always!