Thursday, December 31, 2015

The day after chemo

I was at work today. Super productive with the dex impacting me full force.  I was out in the field part of the day, checking on progress on a bridge construction project.  Being in the field kicks the ass of sitting in a cubicle. 







Wednesday, December 30, 2015

Day 1 Cycle 16

This photo is of the second to last step of my infusion today. It's the flush of the port at the end of day one of cycle 16 of my latest cycle of maintenance routine. A cycle is a month. Note that there has been countless other regimens over the past nearly five years. So total cycles for all treatments is an unknown number to me. I suppose I could calculate it, but there is no point.



I'm wide awake from the dex. I tried a different sleep aid tonight and it has had zero effect. My mind is spinning widely.

I'm thinking about my brother and sister in law, who have been faced with one family emergency after another. My sister in law's sister in the hospital, struggling against her lifelong diabetes....another horrible disease. My sister in law has lost both her parents over the past 18 months. Truly sad. But my sister in law carries on in a way that I'm not sure a lot of people could do.

My wife has been sick for a few days with some kind of flu. She's finally feeling better. Gracie, my pup, has an odd fear of coughing. So anytime my wife coughs, Gracie freaks out and leaves the room. Then she comes back. Then there is another cough and she leaves again. So all night I am hearing the click clack of Gracie's nails on our faded hardwood floors.

I'm sick of myeloma at this point. Not the myeloma itself. As I said before I'm at a comfort level with it. It's the physical and mental shit that accompanies myeloma that have me angry (an anger fueled by dex). I'm angry that I'm constantly thinking about my financial future. I'm good right now...as long as I am working. But what about later, when working becomes too much of a chore?  I'm most angry at myself, as I think about and regret and re-regret past decisions I've made that I can't get over right now.  I've decided that I'm a horrible decision maker. I need to adopt the George Constanza of Seinfeld approach, where I do the exact opposite of everything I'd normally do. It seemed to work for him.

I visited my mom for Christmas. We went to her neighbor's for Christmas. I really enjoyed it. A diverse and interesting group of people. It reminded me that I need/want to be more interesting. I've carried a fear my whole life of being an uninteresting older person and I think I may be on my way. I'm thinking about getting a new mountain bike and riding again. A friend goes to the nearby trails on weekends and I think I'd like to join him.

Over the next two weeks I have to see my dermatologist. I know that she'll burn a few pre-cancerous spots off my face. I'll also be seeing the ass surgeon soon. About two years ago I had the most miserable experience of my life at his hands. Because of my lowered immune system, I'm prone to warts and skin viruses in unmentionable places. I'll tell you this, there's probably nothing as humiliating as someone staring up your ass, taking notes.

Before I was diagnosed, I had basically zero exposure to cancer. My perception was very black and white. I thought you were either cured in a few months or you died. Boy was I wrong. Myeloma just keeps giving. Mind you, I know I'm fortunate. I'd doing really well. I'm working and living and planning on getting jacked...lean and mean... in 2016. But if I'm being honest, I'm a tinch envious of other cancer patients, who get sick then several months later are well. I don't say this much, but it's a bit unfair. And I feel like an asshole for even expressing these feelings.

I miss my friends. I miss being able to do whatever I want, going wherever I choose...without having to consider my treatment and doctor schedules.  I can't miss treatments. I never achieved complete response or remission. So delayed  treatment would mean the resting myeloma can go nuts. I'm going to meet my friend David Saturday to hang and watch some college bowl games. But in the back of my brain, I already know that after about 3 hours I'll need to get home for a nap. And that a couple of beers will mean I'm exhausted Saturday night.

On the positive front, the Vikings have qualified for the playoffs. I love this year's team. Super Bowl visions occupy about 15% of my awake time every day. The game is in the SF bay area this year. So if the Vikings make it, you know I'm going. Of course writing this has now jinxed the prospects. I'm up for a new job at work. It's something I'm pretty certain I should get. Again though, I shouldn't write or talk about it...lest I jinx the whole thing. I have a host of conspiracy theories about why I might not get it. I can get a decent level of paranoia going on certain things. This is one of those.

This time of year at Dr Phan's office is always busy. With holidays, people try to squeeze in their infusion treatments. The Dr has a fair amount of newer patients. Not all are doing so great....as far as I can tell, but you never know. Sometimes, like today, it kind of trips me out that there I am. Hooked up, getting chemo drugs infused through a port. I ate cheezits and watched a bowl game on my ipad. I used to sleep under a blanket, so I've definitely improved and made progress. But still it's an odd feeling if you really stop and think about what you're doing. I try not to.

Well, it's time I try to get a little sleep. Don't worry about me. I'll be fine. Just unloading my brain. I guess that's why I better find a new therapist...tout de suite, aka double time in French.



Thursday, December 24, 2015

Doctors Update

Saw Berenson yesterday. First visit in two months. I skipped November. Oooh, so bold. All is good. No changes in my numbers.  So Tuesday we start up cycle 16. 
Also saw the kidney doc. First visit in about 5 months. As with Dr B, no changes. I take losarton, a blood pressure medicine, to slow kidney damage progression.  Lately with my low blood count and low blood pressure, I've been getting a little light headed when I stand up too quickly. So Dr Froch gave me the option of cutting out losarton. I thought about it and nope...gonna keep taking it. Changing what works is not something I do. 

Now on my way to see my mom for a quick vist. Happy holidays, Merry Christmas and Happy new year everyone. Be well. And let's all seize 2016 with gusto and a vengence. As my friend Ken says, it's beast mode time in 2016.

Monday, December 21, 2015

Cycle15

I got back most of my monthly lab results today. These are the precursor to my Weds Berenson visit. So far everything looks good. Low on hemoglobin, so I got a Procrit shot this morning. This might explain my tiredness today.  Creatinine, though, is back down to 3.44. I've been focusing on the renal diet, given the number was creeping up. So I'm quite pleased with that result.


Total protein looks good. Now just waiting on the Upep, which is a measure of the paraprotein (bad protein) in the total protein. I'm anticipating this will fine.


No doubt next week will be the start of cycle 16.


Then we're in 2016.

Thursday, December 17, 2015

Artist Lydia Emily faces down death to spread her light

By now, folks should now that I struggle with finding my meaning. It's been my goal since I was diagnosed. Not only do I want to find my meaning, I want to embrace life and live life to the fullest. I'm particularly taken by people who are doing just that. It's inspiring for me. In 2016, we're going to figure this thing out. For now, I want to share the story of an artist who is doing what she loves as she deals with a likely fatal illness. Please give it a read.

http://www.latimes.com/entertainment/great-reads/la-et-cm-c1-lydia-emily-muralist-20151217-story.html

Hot Links

Just wanted to share a few things:


First is a Caregiving 101 article, that addresses the unique issues of being a myeloma caregiver:
http://mymultiplemyeloma.com/fight/caregiving-101/


Next is an article about adding certain spices to your diet, as a anti-cancer move:
http://anticancerclub.com/healthy-mind-and-body/adding-spice-to-your-life-as-an-anti-cancer-move-by-barbara-versaeval-cunnings/


Then we have a link to webinar that I listened to regarding Disability Benefits. It's very informative and worth about a half hour of your time.
https://disabilityrightslegalcenter.org/sites/www.disabilityrightslegalcenter.org/files/2015-12-16%2014.16%20Disability%20Benefits.mp4


Finally, it's a link to an organization that isn't necessarily cancer related, but for an organization that provides a vital service...connecting people with disabilities with a service dog. Canine Companions for Independence.
www.cci.org/



Tuesday, December 15, 2015

False Alarm on the Port

Yesterday I had an appointment at the hospital for a check and repair of my port. Dr Phan wasn't able to get blood return from it a week ago or so. In my mind, I'd go to the hospital, they'd hook some pressurized connection and blow out whatever was clogging it. Instead, they checked me in for same day surgery, as if they were replacing the port. Had to go through the whole surgery rigamarole. That threw me off. We arrived at 7 am. 4 hours later, they wheeled me into the surgery room, hooked up to my port. Lo and behold, perfect blood flow. The thing was working great. "User error" the doctor said. I'm at one with my port, so getting a new one did not sound like something I wanted. Definitely relieved.


Today, we'll use it for real. It's day 15 of cycle 15 of maintenance. 24 hour urine later this week. Berenson next week.


The Leukemia and Lymphoma Society has a program called First Connection. It allows newly diagnosed patients to talk to more experienced patients with the same blood cancer. I went through training to be a first connection volunteer about two months ago. Last night I had my first connection. I spoke with a woman who had recently been diagnosed with myeloma. She had all the same fears and questions that I had when I was diagnosed. I think she was relieved to talk with someone else with the cancer. And for me, it was a nice step towards my personal goal of being relevant and giving back. Win win. On a side note, the LLS provides support for all blood cancers, including myeloma. But they don't have the M in their name. Some say this should change. I'd agree.



Sunday, December 13, 2015

The Beat Goes On

I was in Orlando this past week, just for two days. Kind of a long way to go for one night.  I went for a meeting of a myeloma group that I am a member of. I'm not sure I contribute much, but I definitely learn a lot. I also get to spend time with other patients and caregivers, which doesn't happen a lot. For me the benefits are worth traveling cross country. Two notes: One fellow patient, Yelak, is a 20 year survivor of myeloma. He's about my age, so he obviously was diagnosed at a young age. It definitely seems like myeloma isn't just a cancer for older folks. Anyhow, what was interesting is that even after 20 years of living with the disease, Yelak still talks about having the bubble of unknown hanging over him. He does velcade every week. And he knows that any day, the myeloma could renew it's strength or he could get an infection. Geez, I feel like I'm tired of thinking about myeloma after nearly 5 years. 20 years. But it's nice to know that people are living longer and longer with the cancer. Also of note is the awesome strength of Pat Killingsworth. He's recovering from transplant number 2 in the past few months. Dual transplants is one of several lines of treatment available to patients. Pat hung in there for our meeting, after being in Orlando leading up to this for the American Society of Hematology annul meeting. Pat left Orlando and headed to Iowa to see his transplant doctor. In Iowa Pat had a fever and some gut issues. He's now hospitalized until he can knock out the stomach infection. But how strong must Pat be to have endured a conference, our meetings and a couple of flights. He must have felt horrible but he persevered. He takes his role as advocate quite seriously.

This week I have chemo. Wrapping up the latest cycle of maintenance. Before I can do chemo on Tuesday, I have to have my port checked on Monday. It's clogged. Hopefully, it can get unclogged without much effort. If it can't be cleared, then I might have to get a new port. Fingers crossed I don't. I like my port, I don't want to go through the process of getting a new one.

Lastly I wanted to share the following op-ed from the LA Times. It's written by a woman who was diagnosed with a terminal cancer. I realized that I might be posting a lot of stories related to death lately. Don't worry, I think it's just something that myeloma patients need to get a little comfortable with. Doesn't mean we aren't going to fight. But it does mean, we/I am realistic.

http://www.latimes.com/opinion/op-ed/la-oe-welsh-time-i-have-left-20151213-story.html

Tuesday, December 8, 2015

Power port

I'm on my second port. I've had the current one for quite a while. It's under the skin on my upper chest.  It's great for infusion. Easy.  We can't use my left arm for blood draws or infusion and my right arms veins no longer work. So the port is also used for my bi-weekly blood draws.  Usually a nurse draws my blood and I walk it over to the lab. No nurse was available the other day so Dr Phan was going to do the draw. Takes just a minute. But we couldn't get a blood return. Phan moved the needle around but no luck. The damn thing is clogged. Why? Who knows. It might not have been flushed properly after my last infusion. Possible given the turnover and work load of nurses. But I watch every step and it seemed like it was flushed. Anyhow Monday I have to go to radiology for them to try and unclog it. If it can't be unclogged, then I get a new one. It better clear, I love my port. The lesson here?  Myeloma is always full of suprises. This is a new one for me.


Saturday, December 5, 2015

The Beauty of Certainty

I came across this short documentary about a man finding certainty about his life in the face of his death.
Brian Hendricks just learned that he has terminal cancer. Brian is a teacher and writer filled with the joy of life. He has the tools to put everything into a universal context – even his own death. But will these tools fail him as he wrestles with his mortality and what it means for his life, his family, and his legacy?
What do we know for sure? About ourselves, our purpose, and the people we love? Are we realistic about ourselves and our fate when faced with mortality? Does life become clearer or cloudier when we are dying? Our weaknesses, our failings, our anger, our hurt – what happens to them in the end? Watch one man’s struggle to answer these questions and find beauty in the certainty of his own death.

The Beauty of Certainty

Wednesday, December 2, 2015

55!!

Today is 55 months since my myeloma diagnosis. Yesterday was day 1 of cycle 15. Revlimid, velcade and dex. Today I'm operating on 4 hours sleep and fired up.


55 is also Anthony Barr a linebacker for the Minnesota Vikings. He went to UCLA. Go Bruins! In case you haven't been keeping track, the Vikings are looking awesome this year and there is talk of them being a Super Bowl contender. And that's not just me talking, although I am a bit focused on this possibility.


Check out this play by #55 in last week's Vikings game....







Tuesday, December 1, 2015

Full House

With the holidays, people have to adjust their chemo schedules. Full house today to accommodate folks who missed Thursday/Friday.