Crackers.

All tests but one are complete and results have been sent to Dr. Sarriera.   We, once again, knew what we were going to hear.  We, once again, tried to prepare ourselves knowing what we were going to hear.   We, once again!!!

Three years ago about this time I discovered a small lump on my head and proceeded to get it checked, X rayed, etc.  Three years ago and we are still fighting the fight.  Three must be the magical number because it seems Bill and I get 3 months of easy going and then BAM!!  This time the Myeloma is back as well as the lump.   And the lump is in the same area where the first one started.  It's measures about 1.5 inches by 1.6 inches and covers the "crater" as I called it.

My bone marrow biopsy didn't show any detectable Myeloma present.  My MRIs of the spine didn't show any active Myeloma lesions present (still have the lumbar MRI to do yet).  My lambda light chains have spiked to 15.5.   The pet scan showed "soft tissue mass on the underlying brain."  No other masses or lesions were detected on the pet scan.  Tears wouldn't stop.

All this we were told by Dr. Sarriera but had read some of it in my health portal.  So, once again, we are going to change up the treatment plan.  No longer just going to the Cancer Center once a week.  Dr. Sarriera first said about us going to Moffitt to see if I qualified for a clinical trail.  I told him that I was on their list for clinical trials and apparently there isn't one for me at this time.  He then said he would like me to see a radiologist again.  Just to have them look at the lump.  I told Dr. Sarriera that I really didn't want to do radiology again if I didn't have to.  I am being a bit vain but I don't want to shave my head again.  2 times is enough.  But if there isn't any alternative, I would do what I have to do.  He also mentioned he is going to refer me to the Mayo Clinic in Jacksonville.

Last he discussed the treatment plan he has for me now.  My Myeloma is very aggressive as I have mentioned before.  He wants me to get started on the plan and not wait for referrals etc to happen.  As far as going back to what I was doing, that is not going to be.  He feels the meds I was on have worked their course.  So I will now be taking a chemo pill with the name of Panobinostat (Farydak - I will be calling it fairy dust).  Will take this on Tuesdays, Thursdays and Saturdays every other week.  I will still have the chemo infusion of Kyprolis at the Cancer Center but will be twice a week instead of once a week.  The dosage will be increased also.  He also increased my Dex from once a week to twice a week (sorry Bill).  The Kyprolis and Dex will be three weeks on and one week off in conjunction with the Panobinostat.  All this is to start May 7th.  More tears.  Just so tired of it all.  But what are my alternatives?  We will fight this ugly disease once again and for as long as it takes.  Dr. Sarriera was sympathic and let me cry.  We then discussed the hernia operation.   He said that he does not recommend me doing this for several reasons.  My blood counts are low, I would have to be off treatment for 3 to 4 weeks and then there would be a recovery time of 2 to 3 weeks (I think I have that right).  His recommendation is no surgery.!!  With the way the Myeloma is progressing, he doesn't feel I can be without treatment for that long of a period.   So no go on fixing the hernia at this time.  I will deal with the pain.  If it gets to bad, I can always get some pain pills.   We talked a bit more and he and his fellowship trainee left.  More tears.

But guess who just happened to be walking down the hallway?   Desiree.  Whether she knew I was there or not, I don't care.  She came in my room and and gave me the warmest, caring hug.  A hug that was so needed.  Desiree.  Almost three years ago, she was my first oncology nurse with a heart of gold for her patients.  Even though she has moved on to another position with the hospital, she seems to pop up every once in a while when I seem to need her.  Thanks Desiree.  Love those baby stories that brings me joy.

I would like to also ask for prayers for my friend Benn.  He had hoped to be able to do a clinical trial but couldn't reach the markers needed.  He is now going to start Darazalex along with Dex and I think, Pomalist.  Similar, once again, to what I was doing.  Praying this treatment works for him.

I had to fast for my bone marrow biopsy.  And without thinking when I made my appointment, the day I had to fast was Easter Sunday.  What, no mashed potatoes, no bread but most of all no Reeses peanut butter eggs???   The day of my biopsy, we were waiting in a room for the nurse to come and get me to prep me for surgery.  In this room are several other patients waiting for nurses to get them for whatever surgery they were having.   I am sure they too had to fast.  So, I had to laugh, when Bill pulled out a pack of peanut butter crackers to eat.  I was waiting on someone to tackle him for them. I was about ready to and I don't like peanut butter crackers.



Quote:

Dang cancer.  Get up every morning and remind yourself, "I CAN DO THIS'!