Memories.

So the headaches did not stay away.  They came back strong.  So hard to keep my eyes open as they feel like they are going to pop out.  Friday, Saturday, Sunday.  Took one of the other meds that is similar to Mucinex.   This seemed to work the best of all.  Today, Monday, it's not near as bad.  Is it because the Darzalex treatment from last Tuesday is almost out of my system?  Is it because the new med is working?  Answers please!!!

Today was our day to go to Moffitt Cancer Center in Tampa to meet with Dr. Ochoa for a consultation on his opinion as to my journey with Multiple Myeloma.  Moffitt, where I got my transplant.  Moffitt, where I spent almost 30 days 1 1/2 years ago recovering from my transplant.  Moffitt, Tampa.  We left around 8:30.  My first appointment was at 12 for labs.  Then 1 for Dr. Ochoa and 2:15 for my immunizations (my baby shots).

We got to Moffitt around 10:30.  Way early but you just don't know what the traffic conditions will be on 417 and I4.  Ate, then headed to customer service to asked where Dr. Ochoa's office was located.  Been awhile and just wasn't too sure.   Bill and I had a good laugh because I asked the customer service agent where, he told me and I walked away to get Bill.  Then all of a sudden I forgot what he told me.  Chemo brain is real!!  Went back and asked him again.  Good laugh even from him.

Elevator A, 4th floor, make a left, office on the right.  BMT Clinic.  Had my labs drawn and around 12:50 was called back to Dr. Ochoa's office.  Sat there for only about 10 minutes and in he comes.  Looked at me and said, "You really look different since the last time I saw you."  Yes, hair and about 20 pounds heavier.  Dr. Ochoa started off by asking some questions about my treatment plans etc.  We discussed my labs, my treatment plans, my failed treatment plans, my CT's, Dexoscns, Pet scans, radiation, bone marrow biopsies, MRI's and my 3 relapses over the last 1 1/2 years since my transplant.  He felt all the directions Dr. Sarriera where ones he would have chosen.  And he totally agrees with the plan I am now on with the Darzalex is the right one at this time.  I discussed my headaches with him.  Behind my eyes, at my temples, across the top of my eyebrows and sometimes at the nape of my neck.  (I have a CT scan of my sinuses scheduled for next Friday).  He too, felt it is sinus related.  I have a low level of antibodies making it hard to fight off certain infections.  Dr. Ochoa recommend that I discuss with Dr. Sarriera the possibility of an IVIG infusion to help strengthen my immune system and possibly help with the headaches.

After being a bit emotional about my relapses and wanting a plan to work, Dr. Ochoa talked about what could happen next if the Darzalex failed.  This could be before the plan was finished or even after a bit of time has gone by.  The failure would show in my labs or my Pet scans etc.His recommendation would be for me to participate in a new clinical study regarding Car-T cells that he feels I would qualify for because of my "markers".  Markers like relapses, low antibodies etc.  Car-T cell treatment is where my T-cells (an immune type cell) are removed and changed in a laboratory to attack cancer cells.  This process would be a 30 day stay at Moffitt.  Dr. Ochoa is going to submit my info to the clinical trail to get my name on a waiting list.  We are hoping this will never happen but this would be another plan in case it does.

We spent an hour with Dr. Ochoa and his PA Kristin.  Can't wait to discuss with Dr. Sarriera.  Good byes, good luck and off to get my 5 baby shots.  DPT (diphtheria, tetanus and pertussis), Hip (flu), Hepatitis B, Polio and Pneumococcal Conjugate vaccine (pneumonia, meningitis).  Ouch, ouch, ouch, ouch and OUCH.  Done.  Stopped at Starbucks for the first floor for a Chai Latte, got our car and home.  Great visit.  Glad we did it.

Pulling in to the Gold Valet parking at Moffitt started a flood of memories.  Unhappy and happy memories.  Remembering needing a wheel chair to go from labs, doctor's offices, infusions.  Remembering infusions of potasium and other fluids.  Remembering being so tired as I waited for appointments to see doctor or for labs.  Remembering my head of no hair.  Remembering wearing masks.  Then I remember Christie the BMT receptionist.  Remembering when I was so cold and so tired, Christie bringing me a blanket and helping me lie down on a small couch till my appointment with the doctor.  Remembering the tuna, ham or turkey bag lunches we were able to enjoy a while waiting for appointments.  Today I got to see and hug Christie again.  She didn't recognize me with hair but she did remember once I mentioned the name Snowberger.  So happy memories and unhappy memories.  Memories of my Moffitt days.

Quote:

And if I relapse again, I will get up, dust myself off and try again.