Tuesday, October 28, 2014

Kidneys and More

Recall last month my creatinine went up to 4.9.  Put a bit of a scare in me. The kidneys reflect how the multi myeloma is doing.  At its best several months ago, we had the creatinine number down to 3.2. The lower the better. And that 3.2 was out of failure range.  Last month, I was about to complete my 8th cycle of treanda part deaux, which has done a great job of beating the disease down. But the treanda makes the kidneys work harder and the 8 cycles probably had something to do with the 4.9.

I'm on maintenance now. In the middle of the 1st cycle of maintenance. Velcade, dex, revlimid and medrol. No treanda.  The other day I did basic blood work, using my balky veins. The results are in and the creatinine is back down to 3.79. Good news. Getting a break from treanda was just what I needed.  I've also added a curcumin supplement to my daily regimen.  Curcumin likely helps fight cancer and provides overall physical benefits. And I've gotten serious again about my kidney diet.  Put it all together and we have me out of the failure range again. Phew.  Let's keep it up.

Pat Killingsworth has written about curcumin and I'd suggest going to his website www.multiplemyelomablog.com  to read about it.

One last thing, my friend Brad started treanda this week.  He's the second person I know who has tried it.  It's always a little nerve wracking trying something new. But I am confident the treanda will beat his myeloma down.  Nonetheless, let's all send positive wishes and thoughts in Brad's direction. 

And....that does it for today's update.

Saturday, October 25, 2014

Things We Don't Think About

I've mentioned it before, we can't use my left arm for giving blood, infusions or blood pressure, given the unused fistula in my wrist...the marriage of a vein and an artery...for use if I ever have to dialysis. Hopefully not.  Anyhow, my right arm veins are becoming almost useless. The biggest and best source of blood has scar tissue and is now dry. Weird stuff.  So when I go to give blood, it's a darn challenge. Today was a simple two vial blood test. CMP and CBC.  Took 4 needles before we finally were able to tap into a usable vein. Ugh, that sucks.  Luckily, I know the lab tech and she tries to be as gentle as possible.  Recently I went to a new lab and that was a big mistake. The tech used a large needle and moved the thing around like it was searching for an undiscovered reservoir of oil.  The tech today used a small needle and is real careful. I have a port, but that's reserved for chemo or very specific people to use. But, I need to talk to Dr Phan and figure out what we're going to do going forward. I give  a lot of blood and there's got to be a better way.

File this under: Things we don't think about.

Saturday, October 18, 2014

A Post from Tom Shell writing for the Myeloma Beacon

Here's a good read from Tom Shell writing for the Myeloma Beacon.  It's an apropos slice of life about living life with myeloma.



Starting this week it's back to maintenance. Finally. Great news. And a bit scary. Here's what my new routine looks like on paper.

Monday, October 13, 2014

What Didn't Get Opened

Winding Down on Birthday Celebration aka Protein or No Protein

Fairly tame as far as birthdays go.  Two beers with dinner on Thursday night. One beer Saturday.  I didn't even open up my giant bottle of Shmaltz Beer that I have.  Who am I?  Saturday night we did get to Baskin Robbins for my ice cream splurge. Rocky Road plus Oreo & Chocolate. No Cone.  The highlight of the weekend was a trip Sunday to a place called the Gentle Barn. It's an animal sanctuary about 60 miles from our house.  Just an awesome, fantastic place.  For about a year prior to my diagnosis, I had given up meat. I still ate fish and occasional chicken. But that was it.  As I was getting sick, but didn't know what it was, my energy was really suffering. At first, I chalked it up to not getting enough protein in my diet. Wrong.

Anyhow, once diagnosed, I was told I needed to eat protein to keep the body strong to fight the impact of the chemo and the cancer. And since I had kidney damage from myeloma, I had to limit (and still do) my intake of foods high in phosphorus and potassium.  This ruled out nuts, beans, legumes, and soy as my protein source. So I started eating meat again. Well, after visiting the Gentle Barn I'd like to give up meat again. But again I'm faced with the question of where I get my protein. But is protein really that important? I don't know. I'm curious what other myeloma patients think. Nutrition has always been a challenge. Doctors don't talk much about it. They just tell you to eat. A cancer patient eating is a good thing to an oncologist.

In terms of the week ahead. I've got Berenson this Friday. Should have my lab results mid week. I did notice that I slept through the night last night without once having to get up to pee. That's amazing and must mean the myeloma is under control. Typically, my myeloma produces a whole lot of protein and I pee a lot. At it's worst, I was getting up 4-5 times a night. Of late, it's only once or twice.  But to not get up at all is pretty darn nice.  And having slept through the night, makes me want to spend the entire day in bed.  This is a story for another day...but as much as I like my job, getting up to go to work while having the myeloma hanging around is becoming less enjoyable all the time.

Tuesday, October 7, 2014

Identity Crisis

So here's the deal.  I turn 53 in a couple of days.  Recently I passed 41 months since my diagnosis.  Later this week I do my monthly labs...24 hour urine, urine catch and about 186 vials of blood.  This is followed by a visit next week with Berenson.  My creatinine has been going up, but I blame it on the chemo and my getting lazy on the renal diet.  Assuming my myeloma numbers are all good, we're switching to maintenance next month.  I've done 8 cycles of treanda since my March relapse. It's time to give the body a rest. I think I jacked up my new port already. Painting, working out, blah, blah, blah. It sucks. You want to live normally. You want to work out to stay ahead of the game. I don't want to look sick. Well, I'm not sick. But then again I am sick.  Anyhow, having this balky port is annoying. But my veins don't work so well anymore, so the port is pretty necessary. Phan wanted to take it out. I said no to that. I did ask for an ultasound just to make sure it's still in place, but he wants to wait. He does want me taking antibiotics just to make sure it's not infected. Infections are the mortal enemy, the kryptonite to myeloma patients.

Earlier today I re-read emails from when I was first diagnosed. Bad idea. That was a scary ass time, for everyone all around. Life has changed a lot. In my early posts, I wrote about all the anger I had that came with the diagnosis. I wrote about not wanting to be identified from that point forward as a cancer patient. Like that was some kind of scarlet letter. I'm no longer angry. Well, it's a different anger. I'm no longer worried about being identified as a cancer patient. That's who I am. I can't remember me before myeloma. And I've met amazing, incredible people. Why wouldn't I want to be associated with them. And in terms of anger, I think now it's an anger that results from kind of being in limbo.  Cured? No.  Sick? No.  Doing treatment and being careful? Yes.  I think folks forget that this is what myeloma patients go through. You can't be on alert non stop for years.  But you also can't get hung up little stuff. 

I've also been having those questions about how I got here. Rethinking life decisions from 20 years ago. Wondering where I go next.  As I turn 53, it's important to note I'm just two years from being able to retire from my job. Sounds weird. I feel about 30 years old. But now that I'm coming up on 4 years since diagnosis, how much time do I have left? Could be a lot. Could be a little. But the point is, do I want to spend my days and my energy working? Or do I want to spend my energy and my days living life?  I've got a Vegas trip in November and a Minnesota trip in December.  In the spring I want to investigate other states, other cities. Start thinking about where I could or should move to in two years.  I imagine getting Leslie on board with a  move to Ames, Iowa could be tricky. But it is rated as a top ten place to live.

I got a dog a harness for my Go Pro last week. I really wanted to hook it up to Gracie and film things from her vantage point.  And guess what, I can't find my fricking Go Pro.  Dammit. Anyhow, I was talking to a co-worker yesterday and I was saying how I could retire in two years. Their suggestion was to put in ten additional years and I'd nearly be matching my salary in retirement. 10 years? I didn't say this, but ten years is a hell of a long time for me. Working for ten more years is a non starter.  At that point I'd really be pushing the myeloma limits. Of course unless a cure or better treatment has been identified. Always possible.

But this all boils down to what is next. Keep fighting myeloma of course. And?

Thursday, October 2, 2014


41 months. 41 months since diagnosis. Getting to be an old timer with this stuff.

41 was the number of Brian Piccolo, a running back for the Bears in the last 60s who died from cancer. His story was told in the tear jerker movie, Brian's Song, starring Billy Dee Williams and James Caan. It'll get you every time. 

Wednesday, October 1, 2014


So my myeloma numbers have been dropping. That's a good thing. All signs point to getting back to maintenance soon. Friday I'll wrap up the current cycle. Next week we do our monthly test.  Mid cycle I do basic blood work. Got those results yesterday.The disappointing thing? My creatinin. It went back up to 4.9. That's it highest in over a year. It typically is a reflection of how my myeloma is doing. But if my myeloma is doing ok, why is the creatinin going up?  I have gotten a little lax on my kidney aka renal diet. So I guess I better tighten things up. Need to lower my phosphorus and potassium intake.  We all draw a line in mental sand of what we'll tolerate. I'll put up with chemo till the cows come home. It's a known quantity. Dialysis? That's an entirely different story. I haven't done it. I do have a fistula in my left wrist, just in case. But my plan is never to use it. Dialysis feels like an absolute life changer.  It's a scary thought. So now I'm on pins and needles till my next lab work.  I should know better. No point in being anxious.

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...