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'!

Jewelry.

Bone marrow biopsy went pretty well.  We were there by 5:45.  They took me to a room to register me.  Can’t understand why they even call to preregister you and you still have to go register again.  Well, that took about 15 minutes.  Then we waited until 6:25 till the volunteer took a group of us to another room to wait for our nurse to come get me for prep.  That was about close to 6:50.  Took me back to the prep room for surgery.  Routine stuff.  Change into a hospital gown, put the blood pressure monitor on your arm, the finger tape with the monitor for your heart rhythm, access my port for labs and anesthesia later, ask a bunch of questions, bring Bill back, talk to doctor, talk to anesthesiologist, talk to nurses that will be in the room with me.  Finally ready at 7:54.  Once in room at 7:57, roll over on table at 7:58, done.  I am out.  It seemed to be pretty important with these times the nurse was saying to one another. Now in the recovery room.  Bill is there.  Need to stay an hour once I am awake.  Home around 11.  Something to eat and to bed.  Slept till about 3.  Fell asleep sitting in my chair and in bed by 9:30.  Slept till 8 next morning.  A little sore next day but nothing I can’t stand.  Just feels like a bruise.

Tuesday was my Dex, Kyprolis and Myeloma labs.  Once I had my port accessed, back to the infusion room we went.  Had to wait on labs.  Nurse told me it was Zometa time.  So infused that first and then the Kyprolis.

Now, tomorrow.  As much as I tried to put it out of my mind, I just couldn’t.  2 1/2 hours.  I told Bill when I got up that I was going to cancel.  Didn’t think I could do 2 1/2 hours.  He wasn’t real happy about my decision but left it up to me.  I called the MRI department and thought maybe if they could answer some questions, I may change my mind and try to get it done.  Well, didn’t take me long to cancel.  When I asked if this was the “wide”  MRI machine, she said no.   Wide one was not scheduled.  WHAT?   It’s in my record that I need the wide one.  That I am very claustrophobic. Can it be changed to the wide one?  Yes, May 23rd.  Cancel and don’t schedule the 23rd. On the phone and email with Dr. Sarriera’s office.  Ana was right on top of it.  MRI, OPEN MRI, is now schedule for next Wednesday, April 23rd.  They will only do the thoracic and cervical scan that day.  The lumber scan will be done on the 30th of April.  Dr. Sarriera was kept in the loop and agreed to all the changes.  Thank you Ana for putting me first this morning.  I was very upset and stressed.  Ana took my problem and ran with it till it worked for me.

Still on for the Pet Scan Monday.  Kyprolis and Dex Tuesday.  New MRI Wednesday.  Appointment with Dr. Sarriera Friday. Then last MRI on Wednesday.

I always leave my sewing room covered in pieces of threads and material. I was IMing with another quilter I have met online and she told me this is called quilters jewelry.  

Quote:

One day at a time, one step at a time.  Do what you can, do your best.  Let God handle the rest.

Smiley.

The requested tests Dr. Sarriera ordered to see the progression of my Myeloma have been scheduled for this week and next.

Tomorrow, April 15th, will start with my bone marrow biopsy.  This biopsy will be done at ORMC (Orlando Reginal Medical Center) which is part of UF Health Cancer Center.  And I will be under anesthesia.  We have to be at the hospital by 6 AM.  Will have to leave here by 5:15.  Surgery scheduled for 8 AM.

Tuesday, April 16th, is my chemo infusion of Kyprolis.  Should be a short day.   Do need to have Myeloma labs drawn along with my regular labs (CBC and CMP).  Dex day too.

Scheduled for Thursday, April 18th, is the MRI.   This will be a 2 1/2 hour scan.  I hope I can do this one, claustrophobia that I am.  Dr. Sarriera prescribes anxiety meds to help me through it.

Then, Monday, April 22nd, we have scheduled the Pet Scan.  Another test that I need anxiety meds for.

Tuesday, April 23rd, chemo infusion of Kyprolis.  Dex of course too.

Friday, April 26th, is our appointment with Dr. Sarriera to discuss all the results from the above tests. Praying that nothing shows up.  But in my heart, I think there may be Myeloma lurking somewhere again.  Dr. Sarriera will have a plan if it shows it’s ugly face.

Been thinking about my great grandmother especially when I am sewing.  Grandma Smiley.  She was the one who taught me to sew using a “Treadle” machine.  No electric there.  Just use your feet to operate.  We made quilts, rugs, dish rags, pillows, doll clothes and more.  Wish I had that machine to teach my granddaughters to sew on.

Quote:

In the darkest times, Hope is something you give yourself.

240

Today, April 8 was a long day for us.  Doctor’s appointment and then our Myeloma Support Group meeting.  Left the house at 2 and got home at 9.  And we have to be at the Cancer Center at 8:30 tomorrow.  My long Darzalex day.

The doctor’s appointment was with Dr. Kahky to review my CT scan.  He came in to the room and the first thing I did was look to see if he was wearing khaki pants. 😂  He reviewed my info and asked questions about my abdominal pain.  He said there wasn’t any mention on the CT report of any hernias other than a small umbilical one.  A few small cysts in my kidney but nothing that would cause my pain.  He then left the room to look at the actual scan again.  Back in about 2 minutes and said that he sees a hernia on my right side and a very small one on the left.  Not sure why the person who reviewed the scan didn’t see it.  He then did an exam and verified his findings of a hernia.  Dr. Kahky then discussed the treatment.  It would an in and out procedure.  Laparoscopically and under anesthesia.  First he wants to review the scan with his team.  Then he will call Dr. Sarriera to make sure the procedure will not interfere with my Myeloma.  My immune system i.e. platelets, white blood cells etc. being the concern.  Will get back to me in a few days.

Nancy Bruno from the IMF (International Myeloma Foundation) was our speaker tonight. What great info she shared with us.  This wonderful organization is fighting hard to help find a cure for Myeloma.

This past weekend our HOA president, Jeff, passed.  He battled colon cancer and won about 3 years ago.  In January of this year, he was diagnosed with liver cancer.  He lost that battle.  Great person.  Will be missed.

After Dr. Kahky introduced himself to us, he asked how long have I had my pain.  I explained it had been forever.  He then showed us a paper that said I have had my pain for 240 years. Well, that sure did make us laugh for a bit.  I think I look good for being that old.

Quote:

The struggles you are having today developes the strength you need for tomorrow.

Emma

Today was my appointment with Dr. Sarriera to discuss my Myeloma labs.  Today We were hoping to hear good news as we reviewed the lab results and Bill and I felt they were good.  But we saw one that we weren’t to happy about but still hope for good news.  First Abby came in to discuss my results.  She talked about my CT scan scheduled for tomorrow looking for a possible hernia and my appointment with the surgeon on Monday.  Then she said - not too happy with your labs.  I knew she was talking about my Lamba free light chains (plasma cell disorder).   It went from 1.53 (12/26/18) to 11.0 (3/26/19).  She did say that sometimes the tests could be wrong.  This would be due to the draw sitting around too long, calibrations not set right, draw not shaken enough.  Has happened.  All other labs were good.  M Spike still good at 0.1.  Abby then went to discuss with Dr. Sarriera.  He came in but didn’t have his usual good news smile on his face. He, too, discussed my CT scan for tomorrow for the possible hernia.  He doesn’t think it’s a hernia.  And he doesn’t think it’s Myeloma related since I have had this lower abdominal pain for forever.  So we will see.  Then discussed my increase in the Lambda light chains.  He didn’t mention what Abby said about the lab tests being fluckey at times.  He started off saying he wants me to have a full body Pet Scan (last one was January 30), a MRI of the whole spine, bone marrow biopsy and repeat of the Myeloma labs.  Then an appointment with him in 3 weeks, April 26th.   All tests to be completed by then.  Need to see if the Myeloma is progressing.  We will keep my treatments the same until all tests done.  If it is progressing, will talk then of what changes will be done with the treatments.  Dr. Sarriera is on top of things and I trust him and his team with my Multiple Myeloma health care.  He also mentioned, again if it is progressing, that I may want to contact Dr. Ochoa (transplant doctor at Moffitt) and get into the Car-T trial.   Not something I want to do unless it’s the last step.  I mentioned that my M Spike was good and he said it’s always been good.  Which it has.  He and Abby left the room with us following behind.  We waited for check out to call us for appointment settings.  Then left the Cancer Center.  It was all I could do to keep the tears from flowing. This merry go round we are on as Bill called it today.  A merry go round without brass rings to catch.  A merry go round.

I will get through this set back like I have in all the set backs in the past.  But dammit it hurts to once again go through all these tests to see what’s happening.  We all know there is always Myeloma lurking but I wish it stay away. Give Bill and I some happy days for more than 3 months.  Seems like that’s the time frame.  Yes, I am angry.  Yes, I am hurting.  Yes, I am crying right now.   Yes, I am angry.  Just have to let me be angry, let me be hurting, let me cry.  This ugly disease makes us that way.  I hope and pray that in three weeks I will be blogging all tests are good.  Then I won’t be angry, won’t be hurting, won’t be crying.  Until then, I ask again for your prayers and support that you all give freely.  And we greatly appreciate it.  Some of you have stuck with me since the insight of my diagnosis.  It’s will be 3 years in July that I was first diagnosed with Multiple Myeloma.  3 years and I am still fighting and will continue to fight.  Right now, tonight, I feel like I got punched in the stomach.  Need a day or so to jump up and feel like fighting back.

So thankful for Michelle and Gery.  They were once again ready to make us smile a bit tonight once I shared the news with them.  Always there when we need them.  Not sure how I would do without Michelle.  And I am sure Bill feels the same about Gery.  Oh, we can’t forget Tucker.  He’s always happy to see us on good days and bad days.  Just bring him some treats.  😋

Today I got a text from Kristi that started out this way - just got pulled over by a Winter Park cop (I am thinking was she speeding, go through a red light or stop sign?) while walking the dogs (I read that part then).   She wanted to know what kind of dog Emma was.  Really. 😂 Emma is a beautiful dog.

Quote:

Some days there won’t be a song in my heart.  But every day I challenge this cancer and survive is victory for me.