Wednesday, June 29, 2016

Kidney Power

My biggest fear since diagnosis has been my kidneys failing. Early on we were on the brink of failure. If you were to go simply by creatinine levels, they failed a long time ago. In fact I had a kidney doctor who, without consulting me, scheduled me for dialysis.  I said no to that and changed kidney doctors.  I have never been symptomatic of kidney failure. No swelling, no nausea, I've always been able to pee. So I have never done dialysis. My fears haven't been realized. I'm all for facing your fears. But this is one fear I want nothing to do with. Dialysis? #FTS

Since we have the myeloma under control, the creatinine dropped from the 8s to mid 3s. For the past two years, I have hovered in the 3s. When I was sick a few months back it bounced to over 4 and that gave us some concern that the myeloma was gaining strength. But I got healthy and the creatinine went back down. For my past two lab results, I've had 3.22 and 3.23.  Record lows for me.

Also recently, my current kidney doctor gave me some flexibility on the food I can eat. I had been on a fairly strict renal diet, i.e. low potassium and low phosphorus.  Now I can cheat a little. I still don't go crazy, but the flexibility is nice. This is especially true since I've cut out beef, pork and chicken. I need plant based sources of protein, and these often have a bunch of phosphorus or potassium.

My most recent labs are significant, because we can see the results of my expanded diet. And all is well. My potassium and phosphorus remain low. My kidneys are in their own kind of beast mode.

Thursday, June 23, 2016

The Original Beast Mode

I talk about going into beast mode for my Kilimanjaro training. Beast mode is a mind set. It's best described by the originator of beast mode, Marshawn Lynch, recently retired NFL running back. Follow the below link and watch the video. Enjoy.

Over and over and over

Wednesday, June 22, 2016

Wilbur Ties the Knot

I'm pretty sure I've mentioned Wilbur before. He's a friend's rescue Basset. The friend is John DiNunzio, who is a bike planning extraordinaire located on the Central Coast of California. John sent me this picture of Wilbur's recent wedding, marrying Jazz. Thought I'd share.

Lowered Immune System Effects

My treatment and the myeloma mean I am typically immune compromised. During my week off, I'm usually ok. But for a week or so after treatment, my immune system is low and I need to be cautious and stay away from environments that may have lots of germs.

Caution will only get me so far. My body has viral crap that is normally dormant in my system. Wouldn't even know I have the virus. But the low immunity gives the crap a chance to come out of hibernation. For me, it's viral warts. Over the past couple of years, they've popped up in strange places. Toes, private parts, etc. Yesterday I noticed them coming in on a finger. This is new. This is also very maddening. My fricking finger? Come on, give me a break! I need to make an appointment with dermatologist. Until then, no shaking hands. That I can live with. But no high fives. That sucks.

We're constantly searching for foods and supplements that will boost my immunity. It's a topic that cancer docs don't really get into. So I and we are left to our own devices. If I discover something, they only thing I can get from the doctor is if whatever I discover impacts the kidneys or how a supplement interacts with my cancer drugs.

Tuesday, June 21, 2016

The Mysteries of Myeloma

I like to think that after 5 years I have this myeloma thing figured out. I understand my treatment and how it's going to make me feel. I know what to look for in my labs. And I think I generally can gauge how I am doing by a variety pack of symptoms. Then there are days like today. I have chemo later this afternoon. This past weekend  I got in two good hikes. Yesterday  I felt good, no lingering achiness from the hikes. This morning I should feel great. But my body and legs ache again and I'm a little worn out. WTF?  But that's the thing. We never really know how we might feel day to day and what is the cause. I'm basically on cruise control with treatment. I'm healthy enough to climb a mountain. But you can never relax and not think about myeloma. I've asked other patients who have had the disease for a decade or longer if they are ever able to go a day without thinking about myeloma. And the answer is no. It's always hanging out in their thoughts. Freaking annoying. Today's aches and pains are unexplainable. It's just one of those things. I'll go to the gym before chemo and try to work things out. A little stretching, movement and exercise should help.

Support my Mt Kilimanjaro Climb to Raise Money for Multiple Myeloma Research Foundation

Sunday, June 19, 2016

Friday, June 17, 2016

Beast Mode for Kilimanjaro

It's an off week from chemo. It's my break between days 1 and 15, if you're interested in schedule. My creatinine this week was 3.22. Tied for the lowest it has been since I was diagnosed. That's fantastic, means the myeloma is under control. Nice results as time passes and my 5 year cancerversary is distant in the rear window.

As much as possible, I've attempted to work out and stay in shape this whole time, even during chemo weeks I try to get some semblance of a work out.  Of late and necessarily, my workouts have been kicked up a notch. Cardio and leg stuff specifically is the focus. And here's where I can tell I am getting older and I have cancer. It's a bear. Gone are the days I can get in shape lickity split. Last weekend was particularly difficult. My bounce back from chemo usually occurs 3-4 days after treatment. I do chemo on Tuesdays. But last weekend, I was  achy and tired the whole time. I tried to do my Kilimanjaro training, but it was super tough. I felt a bit defeated and was wondering why I thought I could do this.

But! This week is totally different. I can tell I'm finally getting stronger and my cardiovascular capabilities are increasing. Now I'm pretty confident I can do this. In 3 weeks, the Kilimanjaro team is going to Colorado for team building and training hikes at high elevation. Kilimanjaro is 19,000 feet. While in Colorado we'll get up to about 14,000 feet. This will definitely be a test for me. I'm always low on blood..ergo less oxygen to keep the muscles moving.  I need to stay in beast mode.

Speaking of Kilimanjaro, I've reached $5,000 in fund raising. Half way to my goal. If you're interested in learning about why I am climbing or if you want to make a donation, simply go to:
Matt's Mt Kilimanjaro Climb for the Multiple Myeloma Research Foundation

Thursday, June 2, 2016

5 years 1 month

Now it gets complicated. What image do I use for 5 years and 1 month since diagnosis? I'll tell you what, this myeloma is the gift that keeps giving. Physically I'm pretty good. I'm waiting for this month's lab results. Tomorrow is Berenson. Next week, we start another cycle of maintenance. Kilimanjaro training is in full force. Beast Mode.  But I'm generally tired, my gut is always a little funky from all the different meds I take. My mood is pretty good, although I can be a bit snappy lately.  I realized that while I dream of the day I don't have to work and can take daily naps, I need a plan. What's my hobby? What's my passion? How will I spend my time? That's my goal this weekend, to put that vision together.

Wednesday, June 1, 2016

Port Pillows

For those with ports, we know that it makes life easier by allowing us to not be constantly poked. For me the port is vital. The veins in my right arm don't work any more and my left arm is off limits, given I have the (no longer functioning) fistula, put in by a previous kidney doctor in case I needed dialysis. Knock on wood, no dialysis. But having a port also can make normal things awkward and challenging. This is a story about a woman who is helping with one of those awkward issues.

You're in my Chair

It's 3 AM as I write this. Earlier today I had my monthly darzalex infusion.  Five hours. The first 4 go by swiftly. I get a large benad...