ETFF

Last night was our support group meeting.  Speaker was Dr. Rudy.  He was knowledgable on the subject of Myeloma.  We had our annual summer picnic.  Everyone brought a covered dish.  Was really good.   Ken had mentioned to someone at the annual IMF (Internal Myeloma Foundation) meeting that it would be nice to have the doctors sign a baseball hat and raffle it off.  Someone ran with it and they are raffling it off.  Here is the link for information about this raffle.  Great organization to support.  Also, if you scroll down to the bottom of the link, you will a picture of our support group, me and Bill included.

http://give.myeloma.org/site/TR?fr_id=1600&pg=entry#.WyBwXGaZPVq

Today was my 4th treatment of Darzalex.  No Kyprolis this week but still the Dex.  Took my 5  pills of Dex to get ready for the treatment.  Got to the Cancer Center about 8:15 for my 8:30 start time.  First taken to the draw station for labs.  Had Ellen again.  Her and I have become closer because her mother in law was a neighbor of mom's at Savannah Court.  She has since been moved because dementia had set in.  When mom first moved in there, Millie and her did a lot together.

Port accessed, three tubes of blood drawn and sent back to room 17 with Meredith as my nurse.  Did recognize her but don't remember having her as my nurse during any treatments.  Got me a warm blanket, asked some questions and left to wait on my lab results to come back.  They did and around 9:30 gave me my premeds of Tylenol, Benedrayl and the drip of 20 mg of Dex.  Waited for Darzalex to be mixed.  Started that drip around 10:30.  I was out shortly after it was started.  Had to have my blood pressure taken every 1/2 hour when she upped the ml from 25 to 50 to 75 to 100 to 150 to 200.  We finished up around 3:15.  So just a little over 4 1/2 hours this week for the drip.  7 hours total.

When Meredith asked me how things were going before anything started, I told her about the headaches.  They just won't quit.  Been going on for over a week.  Told her I had talked to the pharmacist yesterday at Costco.  She recommended to try sedafed altering checking the net to see if any information stating not to be taken with Darzalex.  I took one but didn't help much so took Aleve even though I am not suppose to because my platelets, red blood cells and white blood cells are low.  It helped get me through my support meeting with just a dull headache.

Woke up with the headache again.  Mainly around my temples, my sinuses, just above my eyes and horrible pressure behind my eyes.  So about 3/4 through my treatment today, the headache was becoming worse.  I talked again with Meredith about these headaches and asked if they could get me something for it.  She was able to get me more Tylenol.  Not much help.  She also contacted Dr. Sarriera's office.  I had told Abby about these headaches at my Friday's visit so she was aware of them.  Told me to take the sudafed.  If no relief after a few days, gave me a list of 3 other drugs she will try me on.  One more over the counter and two prescriptions.  Just please one work.  I was never one to get headaches and now I am not doing well with them.  Just something work please. Hard being myself with my head pounding.  So just something work.  It's there as I write my blog but need to get this all down in words.  Please something work.

Thank you all for your prayers, cards, phone calls (talked with Louise and Judy for 2 hours or more), texts, comments on my blog and on FB.  I appreciate them all more than you know.  This appreciation is from ETFF.  Everyone's Trusted Florida Friend.  That's the first part of my license plate.

Quote:

May you find the strength to face tomorrow in the love that surrounds you today.