Friday, September 27, 2013
In the past two days, I've done a full skeletal survey (head to toe x rays), had a bone marrow biopsy, had a chest xray, had a dozen viles of blood taken (plus 4 bottles) and collected my pee for 24 hours. We're trying to figure out why I've been feeling bad. Could be the flu. Could be the myeloma reactivating. Could be an infection. We just don't know. We'll know early next week, when all my results come in. Actually the results of the chest x ray are back already. All clear...so it's not pneumonia.
So for the next few days, it's a waiting game. I just want to know what's going on and if I need to reload for another fight, so be it. Let's do it. I'm not the most patient person, so for the next few days, we're talking pacing, short fuse, nervous eating. I'm better than I used to be, but I'm still not so great at waiting.
Also frustrating is that I was kicking up my workout program. I was kicking ass. All of that is on hold. Just not feeling up to it. But I do think a lot of it is mental. The unknown and the worry makes me mope and perhaps feel worse than I really am. So I'm on a break from the gym and riding my bike. Oh, plus my doctors told me to not do anything for a few days. It's important to note that myeloma patients generally have compromised immune systems. The gym can be a germ factory. Dirty muscle heads. So who knows, maybe I caught something at the gym.
Anyhow, we wait. Stay tuned.
Wednesday, September 25, 2013
Well, for those asking for some meat to chew on in terms of updates, here you go. About 4 weeks ago I started to feel achy. My whole body started to feel tight. It wasn't every day, but there were some mornings where it took a while to get moving. I referenced North Dallas Forty in one post. Then two weeks ago, at Phan's office for chemo, I had a low grade fever. 100 degrees. No big deal. Last week I really to started to feel like crap. After breaking out in a crazy sweat during a work meeting, I went in to see Phan He confidently said I had the flu. So I slept for the next couple of days and by last weekend I was feeling pretty good. I mentioned we went up north. We went on a walk on the new Bay Bridge and my back really fricking hurt on that walk. Around the shoulder blades. Odd.
Monday night I had a 102 fever and crazy ass night sweats. Then yesterday at work, in a meeting, I broke out in a raging sweat again. I was soaked. Thank god for undershirts.
So today was Berenson. It's probably not the flu. Could be the myeloma or could be something else, He sent me to an infectious disease doctor ASAP. Here's a picture of all the tubes of blood they took. Oh plus four bottles which aren't visible. The doctor asked if I've been around farm animals. I was at the farm animal sanctuary in Woodstock and got pretty close to a whole bunch of animals, including, yes, goats.
Monday, September 23, 2013
It was awesome seeing everyone. Destiny has about 2 and half months to go and looks great. My mom is amazing. Her energy level and drive is pretty darn impressive.
Here's a photo of the family. From left to right, Uncle Jan, my sister Dana, Justin, Destiny, Leslie, me, my mom Merryll, and Jan's daughter Brigitte.
Now, here's the tidbits:
-Today on Twitter I put up for sale or lease my allegiance to the Vikings. As Adrian Peterson's daughter asked, how can you lose to the Browns? Ridiculous. So I'll listen to any reasonable offer from teams looking for a new fan. All teams will be considered except the Cowboys (never ever ever-see 1975 playoffs), Saints (cheaters-see bountygate), Falcons (the dirty bird-see 1998) and the Patriots (Bill Belichick).
- We stayed in a hotel in Berkeley. Normal check out is noon and we took at late check out of 1. It got me thinking, didn't hotel check out times used to be like 2 or 3 in the afternoon? When did it change? I blame the shift on Vegas hotels. My theory is at some point, their research showed that if visitors were required to check out earlier, guest might need to stay an additional night, because meeting the 11 AM check out is not possible. I could be wrong, Thus, Vegas started the earlier check out trend. Just a theory. Also of note, I've a fan of staying in hotels. There are times I think I could live in a hotel.
- I love airports. Mind you I not a big fan of the actual travel process. But airports are so cool. It's fun checking out different airports in different cities. If I'm flying on my own, I always try to get there early, so I can have a beer, people watch and guess where other people are going. LAX, Los Angeles's airport, is a fricking dump and embarrassment to the city. They've talked about renovating for decades. It's still a dump. I'm a land use planner and I've interviewed for planner jobs at a couple of different airports, including LAX, over the years. Never got an the airport job.
-Any myeloma patients do yoga? Does it help with strength, energy, flexibility? Thoughts? I'm getting so inflexible, with bad balance and aches, I'm thinking I need to add yoga to my program.
- Do any patients get light headed due to their anemia? Has anyone fainted after getting up too quick? I haven't, but there are times I stand up and have to slow down and lean over a bit to get some blood into my noggin.
- Any vision issues? Anyone experience slow adjustment/focus when going from looking at something in the distance to something very near? Does Dex mess with our vision?
-Lastly, do a lot of folks live remotely from their myeloma specialists and travel at some regularly basis to see the specialist? How's that work. I'm fortunate that I live near Dr Phan, my primary oncologist and where I do treatment, and Dr Berenson, who is my specialist. I just got to thinking this weekend, if we lived elsewhere, how would my treatment work. Any insight folks can offer would be appreciated
And that's it. Feeling much much better this week. Still get weird nighttime heat onset. Thursday is chemo and I'll talk to Dr Phan. Friday will be my big monthly labs, including the 24 urine collection. These labs will give an accurate story on how the myeloma is doing.
Friday, September 20, 2013
To summarize: On Wednesday I felt like crap. I was in a meeting and sweating like a mother fucker, wishing I could lay my head down and take a nap. I went to see Phan. He checked me out, looked at my latest labs and told me that it wasn't cancer progression. Instead he said I had the flu. He has always pushed for me to get flu shots. I have never had one in my life. Call me crazy, but why inject a flu into my system to avoid a flu? Phan just shakes his head when I say this. His recommendation to beat the flu was rest and lots of fluids. My nurse, Kristel, gave me a pep talk. They both reminded me that my immune system is already compromised and what immunity I do have is busy fighting cancer. The flu kind of has a free path to jack me up.
Yesterday I took the day off from work. As the day progressed, I felt worse and worser. I was so sleepy, kept getting chills and then sweats, ached, and by last night I had a fever of 102. Whew wee....I was laying on the couch hoping that Phan was right and it was the flu. The symptoms were so similar to what I experienced when I was diagnosed. All kinds of question were going through my head last night. Have I told people I love them? Will the hospital let Gracie visit me in the hospital? When can I see my mom again? Have I ensured that Leslie is taken care of? Is everything in place? Should I go out with a bang?
This morning I woke up feeling better, but still not so great. I called in sick again, with plans to sleep a whole lot. In the morning I got a terrible cases of the sweats. My purple Friday Vikings t shirt was soaked. We took my temperature and it was 101. Ah shit. I took a shower around noon. And soon thereafter I started to feel better. I must have sweated out the flu toxins. It was like a switch was flipped. I suddenly had energy. I had pep. I had life to my step. Well, here it is Friday night and I feel pretty darn good. My throat is scratchy. But no aches, no chills. I'd say Phan was right, it was the flu. Crisis averted.
Speaking of Leslie, she recently went to a taping of the Queen Latifah show. We watched the episode today and Leslie got a lot of face time on camera. Tonight Leslie got a message from one of my nurses saying she saw Leslie on tv. And this brings me to my point. It is so fricking amazing how awesome all the medical people are. The nurses are amazing. They are like family. Doctors. Great. Even the lab techs who draw my blood are cool. I do blood work every couple of weeks. I'm on a first name basis with quite of few techs. They always ask how I am doing.
At this rate, I'll be back to normal and feeling great, and I'll be blogging with few real updates.
Wednesday, September 18, 2013
I'm pretty pleased with myself for being able to be do so well since being diagnosed. My thinking has been clear this whole time. But not so much of late. Tuesday morning, a friend at work asked what's with the picture of the apple fritter. Huh? I had no idea what he was talking about. But I checked my phone and I sent him two text messages Monday afternoon. One was a photo of a delicious apple fritter, followed by a text that said "y, apple fritter". Absolutely non-sensical. I also went back and looked at some of my work emails from Monday. Holy shit, some also made no sense. I was far out in space.
I've held things together pretty well. But part of my fear about the myeloma returning, was that perhaps, mentally, I had hit the wall. Perhaps I wouldn't be able to function so well moving forward. That's some scary shit. But if it's the flu, then I'm good. Rest and knock it out.
The challenges of life, sure don't take a break when you're fighting cancer. Shit just keeps on coming. It was suggested to me recently that I start meditating, to help clear the brain and free myself of worry. I'm naturally a worrier, so meditation is a great idea. I need to do something, I can't freak out every time I feel bad.
As I am writing this I am getting nasty leg cramps. It's fairly normal during my revlimid cycles. But damn is it annoying. Myeloma...I am going to fuck you up.
Friday, September 13, 2013
There was a 1979 movie called North Dallas Forty. It was loosely based on the Dallas Cowboys (my absolutely most hated team ever, by miles). Nick Nolte played Phil Elliot, an aging wide receiver who will do whatever it takes to keep playing. A scene early in the movie has him struggling to get out of bed in the morning. He has a career’s worth of aches and pains. Old injuries stiffen up over night and his pain killers from the previous day have worn off. He manages to get up, takes his meds/painkillers and bounces back. And then it’s off to practice.
Yesterday I felt exactly like this. My whole freaking body ached. It was a pain getting out of bed. I took my meds (not painkillers, instead cancer drugs), but they didn’t help and I went to work and I dealt with the aches all day.
Yesterday was day 1 of cycle 17 of maintenance. Typically a chemo day is work followed by gym followed by chemo followed by insomnia. Yesterday I did make it to work, but was tired and yes achy (and I am whining a bit now). Usually enough days away from my previous chemo, I am feeling great. By the time chemo day arrives, I feel better than I’ve felt in years. Chemo ruins that, for a good reason.
Anyhow, yesterday I didn’t have that great feeling prior to chemo. I tried my best to keep a semblance of my routine and I forced myself to go to the gym. I made it, but can’t say I was super productive.
Lately I’ve been getting a small case of night sweats. Right before I was diagnosed and for a couple of months after diagnosis, I would get horrible night sweats. I’d be soaked every night. We'd lay a towel underneath me so I wouldn’t drench the bed. Getting minor sweats now is a bit disconcerting. Mind you we have been in a heat wave and nights are pretty toasty. We have AC so the house is at a decent temperature.
Before and for many months after diagnosis I’d also get afternoon chills followed by a 102/103 fever. Having cancer, I need to be vigilant about controlling fevers. Fevers can be sign of infection, a real no-no for myeloma patients. Any time I’d get a high fever, it’d be a trip to the hospital for at least 5 days while they tested me for everything possible. Those days in the hospital were the absolute worst. My myeloma was getting worse and it took us a while to find a drug mix that worked. I can honestly say there were a few times that I’d lie in the hospital thinking about my exit strategy. I’d wonder what would be the most painless way to commit suicide. I never got to the point where I had to seriously consider it.
It's been over a year and a half since I’ve had a fever. It’s been lovely. Yesterday though, at Phan’s office for chemo, I had just over a 100 degree fever. Very low grade. Phan wasn’t too bothered by it and was ok with moving ahead with chemo.
For the first several months of my initial treatment, I’d sleep during chemo. I’d be cold, needed a blanket and always watched a movie. For the past year or so, I work or read or talk during chemo. I’m warm, don’t need a blanket and typically don’t watch a movie. My treatments take less than 2 hours so there’s not really enough time to watch a whole move. It was a full house at Phan’s for yesterday’s treatment. All of the infusions chairs were being used. Damn you cancer. Everyone is so damn nice that I am fortunate to have met them and that’s a plus. A weird movie was playing called The Little Black Book. It was about 10 years old and starred Brittney Murphy, who got her start in Clueless and recently died from a drug overdose, I think. The point is that I watched the whole thing. It wasn’t necessarily good, but I watched it nonetheless.
If we packaged up the aches, tiredness, minor night sweats, low grade fever, sleeping during chemo and watching a movie at chemo and you can guarantee I was a little worried and paranoid. My numbers are good though. Creatinin is at a record low. Both Berenson and Phan are very pleased with my numbers and how I’m doing. Seemingly, we have the myeloma under control. All good, right? But notice how I added “Seemingly”. I throw in a qualifier. Underlying that sentence is my thought bubble that says “yes, everything is great, doctors are happy and there is nothing to worry about. However, I’m a little nervous anyway”. Go away thought bubble. Let’s stick with the facts. Today I feel great. I am high on dex. I rode in today, as a little test. Leslie wasn’t thrilled given how I felt yesterday. But I rode in and it was great. My pace was good, no problems catching my breath.
The take away of all this? Myeloma is a tricky one.
Thursday, September 12, 2013
Tuesday, September 10, 2013
Today is Tuesday. Thursday is chemo. The start of a new maintenance cycle. Today I felt pretty good. Rode to work, which is more often the case than not how I get to work. I had 2 and a half meeting with the Port's senior management and some other folks involved in the bridge project I'm working on. Today's meeting was about budget increases and folks trying to wrap their heads around how the budget got to where it is. Not only was the meeting long, it was intense. It had its ups and downs. Everyone was on edge. I was right in the middle of it. On one hand I really like the back and forth. But on the other hand I feel like I'm being launched under a bus. Before the meeting I had a little talk with myself. I reminded myself that I know more about subject than anyone else. I also said to be clear, concise and accurate. I sometimes imagine a scenario where I bring my cancer into the discussion. I never do, but oddly I imagine situations where things get heated, and I have to remind people that I"m working while doing chemo to remind them of my dedication and need to do the job right. Things never get to this point
By the time the meeting ended, I was spent, tuckered out. It took a lot of energy to stay focused and calm. I ate lunch, had a follow up meeting with my boss, and started working on a presentation.
Worked ended and I rode home with two friends from work. Before I was diagnosed, I had the toughest time getting a deep breath when on the bike. It's how I knew something was wrong me. When I ride home now, I take a route that requires me to work. I test myself to see if I get that same out of breath feeling. I don't. Everything is good.
Once home, I fed and walked Gracie. Gracie likes people and she'll take any chance she gets to get attention from a random person on the street. We have an older lady who lives maybe 5 houses from us. I think she's well over 80 years old. She walks all the time. She is quick witted.
When we first moved in to house, I think maybe we were in the house for a month. We were in the front yard and this neighbor lady introduced herself to us. She then asked if I was from New York, because I look like a New Yorker. I'm pretty sure this was code for "hey you're Jewish". I'm not religious but do I identify myself as Jewish based on the cultural part of it. I know a good deli from bad. I like black and white cookies.
Since that awkward first meeting, Leslie and I have aways been wary about this lady. Something about her bothers both of us. Today when I walked Gracie to the sidewalk in front of our house, I saw the neighbor lady talking with another neighbor, just two houses away. I made Gracie do a 180 and we went the other way, I don't even like casual greetings with this woman. Well, the woman saw us and yelled for Gracie. I had Gracie ignore this and keep walking. Gracie kept turning around and looking back to see if the neighbor lady was there. Gracie likes anybody and this woman is no different in that regard. I really really did not want to talk to the woman, so I made Gracie walk fast and skip a couple of her favorite pee spots.
After the walk, Leslie and I went to Matt and Rich's house for bbq and hanging out. Now I'm home and need to sleep. It's late and a work night, plus I'm more a morning person
Friday, September 6, 2013
Side note. Next month's visit to Berenson will be followed by the kidney doctor.
Side note. Ramon is helping me with my get back in shape work outs. Today, we shifted my work out routine. It'll now kick things up a notch.
A couple of things. We track my creatinin, monthly protein and upep (bad protein). I asked Dr B about the M Spike today. I've noticed a lot of myeloma patients follow it. So I am a bit curious on what it is. I didn't get an answer though. Berenson simply said I have kappa myeloma so the m spike isn't a relevant measure.
Also, I've read a couple of things lately about Alpha Lipioc Acid, which I take daily to minimize neuropathy. So far I've been lucky and I haven't had any neuropathy. I've read that APA might reduce the effectiveness of velcade, which is one of my chemo drugs. Berenson said that it's been proven in research trials, but not in patients. To be safe though, the days I have velcade I don't take Alpha Lipoic Acid.
Thursday, September 5, 2013
This week I've been waiting and waiting for the latest edition of Momentum Magazine to come out. I did my interview and photo shoot a couple of months ago. It's a short piece about the importance of bicycling to my cancer recovery. The issue finally came out earlier this week. I'm not yet able to get an electronic version to share. But you can find the magazine in your local Barnes and Noble, bike shops or you can buy a digital issue for $1.99. When I saw my picture and name and my story, I was fired up. I nearly screamed "I made it, I'm somebody". But it got me thinking, why am I getting so excited. Sure it's cool to see our name in print. But it's there because of my cancer. So perhaps I ought to slow my roll, and be less excited.
I mean it is cool. For me it's motivation and a nice reminder of how far I've come in this battle. I thought I'd never ride to work again, and now I ride almost every day. And I hope that it gives some motivation to others that we can fight through this crap. I've never been one to seek attention, so it feels a bit funny being excited about this.
When I was first diagnosed, I didn't want to talk to anyone. It's a pretty shocking thing to hear you have an incurable cancer. Mind you, I'm at 28 months and doing well, and planning on growing old. I got a whole bunch of emails and messages wishing me well, people sending words of wisdom. One thing I got was an email that said I'll beat this thing and go back to living that life of mine, Those words stuck with me. I read between the lines and took the message to mean that I've been living a selfish life and doing my own thing. Living that life of mine. As I have reflected on my past (which I do a lot less of now, it's pointless, we need to look forward) (Satchel Paige once said "don't look back, somebody might be gaining on you), I do think I was a bit selfish and self concerned and self absorbed. But I had set myself up for that. I liked it. I came and went as I wanted. I used to try and travel somewhere once a month. It was easy. I had no mortgage, no wife, no dog, no kids. Pretty foot loose and fancy free.
I've changed. Cancer/myeloma tends to do that. When you get down to it, dealing with a disease and ensuring you are focused on your recovery is in and of itself a selfish act. In many ways, I'm way more all about me. More so than ever before. How I interact with people, what I allow myself to do, everything I do is geared at keeping me alive and functioning at a high level. You can't be anymore self centered than that. Sounds weird, but that's kind of how it is. It's not a bad thing. People should always be concerned about number 1. You are your biggest advocate. And that's me, I've become my own fan. Self confidence was hard to come by for decades for me. Even while living that life of mine, I was shaky about who I was. No more. I'm clear on that.
Lately, I've been thinking about what it means to live that life of mine. I can't do what I once did. I can't get on a plane to visit people every two or three weeks. I have a mortgage, a wife, a dog, a job, bills, obligations. I can't grab a bud light at 10 in the morning and watch football in a vegas casino any time the itch hits me. But part of me, misses that. Life was so easy.
I'm guessing many patients feel at times they want to say fuck it, I'm going out in a blaze of glory. A friend and fellow myeloma survivor just mentioned to me that she was questioning the point of saving for retirement. What is the point? If you look at the survival rates for this thing, a long retirement is not statistically in the cards. But is it a given for anyone? Life is pretty much a giant mystery and crap shoot. Anything can happen to anyone at any time. So how do we balance the uncertainty surrounding us with needing to be prepared for the future. What stops any one for living large? Like I said I am 28 months in to myeloma and am planning to be around for a long ass time. But then again, there are times I wonder why the hell I'm putting on slacks and a work shirt every damn day for work when I should be embracing the world and life. I need to experience stuff before it's too late. I feel good. I have energy to do stuff. But I'm in my routine. The routine is kind of necessary.
I think I need to expand my selfish side. I've been getting a bit lazy with my diet and other things I need to do to stay healthy. I had acupuncture last week. I should go every month or even every two weeks. It's important to my recovery. When I went last week it was the first time in many months. That is not acceptable.
The show Breaking Bad is winding down. The final 4 episodes are coming up. It's been on for 5 seasons. The basic premise of the show is that a chemistry teacher is diagnosed with a likely terminal cancer. He wants to take care of his family before he goes, so he starts cooking and dealing meth to make extra money. It's a fascinating transformation that Walter White, the main character, goes through. But the underlying foundation to the whole show, is that he thought he was going to die and he figured what the heck, he's going to do whatever it takes to ensure his family is taken care of. All of his actions through the five seasons have roots in his cancer diagnosis. At least that's how I see it. And I get it.
All of my actions should be founded in my diagnosis. I should do whatever it takes to stay alive and to make sure that Leslie, Gracie and the people I love are safe and secure when I'm gone. But if I want to embrace life and break out of the 9 to 5 routine, that would mean doing the exact opposite. If I only thought about me and thought about today, I'm not doing much to take care of others. So what the heck? Where and how do you balance these things?
It's been a while since I've written this sort of philosophical, inward looking post. I figured folks were tired of reading about. And I was tired of listening to myself. I'm cruising along, and myeloma hasn't been effecting my life. Last week and even this week, I've been a bit more tired than usual. Paranoia sets in that the myeloma is coming back. My numbers don't look so bad, so I think I'm still holding steady. Tomorrow is Berenson and we'll get the full scope on my condition. Likely, nothing changes...knock on wood. tap, tap, tap. But being tired does raise the question about my mortality and what the heck I am doing. Do I become more selfish and live it up? Drinks on me!!!
As I said, just battling myeloma or cancer or any disease is a selfish endeavor. I'm thinking about me all the time. That's not to say I don't think about others. I do. More so than ever before. I think all my emotions and capacities have expanded hugely in the past 28 months. A fellow patient just told me I should do meditation and yoga to ward off the worry. Worrying never accomplishes anything and doesn't change things. Meditation and yoga will help clear my mind and improve my control over my body. Selfish goals. Yet so crucial.
What's the wrap up here? I'm selfish. I care about others. I miss my old life. I like my new life. And so on and so on. Me, me, me. Tap, tap, tap.
Tuesday, September 3, 2013
Gary Peterson is a fellow myleoma patient. He has a website that discusses myeloma survival rates; comparing doctors, hospitals, etc. It...
The first one is June 20. MMRF Immunotherapy Series