Wednesday, July 29, 2015

Leukemia and Lymphoma Society First Connection Program

The Leukemia and Lymphoma Society has a number of great programs. One is their First Connection program. It connects newly diagnosed patients with someone who has similar experiences with the same cancer. Tonight was my first training to be a First Connection Volunteer. Soon I'll be off and running. When a newly diagnosed myeloma patient calls the LLS,  I may be provided the patients contact info. I'll have one or two calls with the patient to provide support, listen and share my experience. It's a great program and I'm excited to participate and give back.

Also this week, I did my first myeloma twitter chat in partnership with WeGo Health. It's an hour Q and A, where fellow patients share information or answer questions. My job as host was to pose the questions and keep the discussion moving forward. It was fun and interesting and I hope to do more in the future.

Day 15 of the current chemo cycle was yesterday. Tomorrow I do my 24 hour urine collection and give several vials of blood. Next week Berenson.

The good news is that creatinine is back down to 3.3. and hemoglobin is up to 11. Both good omens for positive news with my myeloma numbers.

And that's my story.

Monday, July 27, 2015

Tuesday July 28 Twitter Chat

Don't forget Tuesday July 28 at noon west time, I'm hosting a twitter chat to discuss the patient experiences of multiple myeloma, an incurable blood cancer. The one hour event is presented by Wego Health. If you want to participate, follow along or ask a question, simply follow this link or use ‪#‎HAChat‬

http://twubs.com/hachat

Friday, July 24, 2015

Myeloma Chat on Twitter Tuesday July 28

On Tuesday July 28, at noon o'clock west coast time, I'll be hosting a twitter chat to discuss myeloma and myeloma challenges.  To participate, ask questions or follow along, just use the hastag #HACHAT.  WEGO Health is putting the chat on. The chat will be for an hour. To make things even easier, you can simply use this link:    http://twubs.com/hachat

Diet flexibility

Saw my kidney doctor this week.  Everything good with the kidneys. In fact he loosened up my dietary restrictions.  I can have a little bit of dairy now and again. One of my favorites: apple sauce and cottage cheese.  Haven't been able to have it in over 4 years.  And, bam! Here it is. 

Wednesday, July 8, 2015

Hit the Wall


It's been a while since I've wrote anything substantial. Just haven't been feeling it. There's nothing really noteworthy with my myeloma. But noteworthy is a relative term. And that's the thing with myeloma. Nothing going on doesn't mean we're kicking back worry free. In the past two months, I had a nasty cold that verged on pneumonia and hospitalization. We beat that back, avoiding the hospital, after finding an awesome pulminologist. I'd be lying if I said I didn't spend one night in bed wondering if that was my week to die. Then I lost a good friend to myeloma. Brad passing away is a tough one to move on from. Then I've had an achy back for a couple of weeks. Normally we'd let it go. But given I have myeloma, I've had to do a full body skeletal survey and bone density test. This Saturday is an MRI. Mind you, I'm claustrophobic, so this should be interesting. Also note, that my myeloma impacts my kidneys, I haven't had any bone involvement but the question is has my myeloma morphed into something else. Berenson thinks no and that doing bone surveys, etc is unnecessary. Phan on the other hand says we need to err on the side of caution. I am guessing it's nothing but we gotta rule bone issues out. And then this week I've been tired as all hell. It's a tired that is similar to the tired I was feeling right before I was diagnosed. So I'm thinking, ah shit, time to get off maintenance and attack the myeloma with one of the new drugs. But we did my full myeloma labs this week and all my numbers remain stable. That's good.  However I am hugely anemic, almost anemic enough to warrant a transfusion. I haven't had one of those in two years. Instead, yesterday I got a Procrit shot to bring my hemoglobin up. And through all this, I'm working full time, working out, crushing it and living life. Easy?  Heck no.

The summary: I'm still on maintenance, everything remains routine. A new cycle of maintenance starts next week.  All is good. But it's been a scary, nerve wracking, emotional, wall hitting month or two.

And that's myeloma. It never totally goes away. Every day, every week, every month is a challenge and a victory.

Thursday, July 2, 2015