Tuesday, May 31, 2011

Today

  • woke up
  • walked gracie
  • napped for an hour
  • rode stationary bike for an hour
  • chemo
  • fish tacos at holy mole
  • napped for 2 hours
  • tv
  • sleep

Post Buzz Cut 2011

Matt and Rich only live a few miles from us. Luckily. After the day yesterday, I was fricking beat. No nap all day. I did get a little shut eye on their couch...during which a whole bunch of stuff fell out of my pockets, including my house keys. But we didn't realize the keys were in their couch until we got back home. That sucked! I was so mad at myself and so sad.  I had a little neck pain driving home and I got paranoid about my bone strength. I just wanted to lie down. I'd done some reading of other people's blogs this weekend and read a couple of stories of broken neck bones that people thought were simply strained necks. Paranoia...once of the worst emotions you can have.  Anyhow we drove back to Arm's house and got the keys. Like I said, lucky we live close to each other. Nonetheless, it was a great day and worth the exhaustion.

On my to do list: Get a massive key chain that I can't lose and can't forget. 
We mentioned my neck pain to the doctor today and he assured me that the full body bone x-rays we did 3 weeks ago showed no bone weakness or damage.

One other note, which is really a pre buzz cut note. Amber came over and did some yard in our backyard yesterday.  It was very thoughtful of her and once again reminded me of how darn nice people can be.

Leslie's Cut


The Aftermath

The tools

Buzz Cut 2011

In support of kicking myeloma's ass, yesterday we had Buzz Cut 2011.  I haven't lost any hair from treatment and perhaps I won't. But in a show of resolve, support, and focus, we cut a whole bunch of hair yesterday in Matt and Rich's backyard. Gracie got the ball rolling with her own Mr T Mohawk. I followed with my mini-mohawk.  8 buzz cuts followed. It was an awesome day and really meant a lot to me.


Sunday, May 29, 2011

Newly discovered word......We

I've never been a big sharer of personal information. I don't volunteer a whole heck of a lot. But in the past 3 weeks that sure has changed. And what's interesting is that I'm not my typical uncomfortable self with this whole sharing thing. And what's also a new thing for me, I use "we" a bunch, as opposed to "I". I don't say I had treatment. I say we had treatment. Leslie goes with me to every appointment, which is good, cause I'll often tune out the doctor once I hear that one thing I can glom onto and then I dissect every aspect of that one thing. So I need to think in terms of we. It's a subtle shift in thinking. And I think even this blog is a manifestation of we. We in this case being anyone who reads it. There is a we in winning and a we in tiger blood. Duh!

Sunday's Report

Really, not too much to report. A little tired today. I had a bit of nausea during the night, but took some meds and everything was good. Tomorrow is a big day...hair cut day. Haven't lost hair, but Gracie and I are getting matching mohawks. Solidarity and power of the mohawk!!! It's even stronger than the power of the pyramid. That's a fact.  Gracie already has hers, but I'll post pictures tomorrow when we both have our cuts.

Friday, May 27, 2011

current reading

Suggestions

How best to spend my free time?
Learn instrument...banjo?
Read a lot.
Write screenplay/book.
Angry birds 24/7
Bake a cake a day
Paint

what else?

Time to get deep. (wait for it........that's what she said)

In October I am turning 50. I've been pretty excited about it. 50...no big deal. Now I am excited for the birthday, but for another reason, that's when I'll be winding down on chemo.  Now that's a reason to celebrate. I always figured I'd live till about 90 or so. There's a pattern of people in my family living a long time. And I suppose that is what trips me about my diagnosis. Even with complete remission, multiple myeloma is the type of cancer that will likely show up again. Frankly, hitting 90 for me isn't a sure thing. But that's fine.

What's weird is that about a month and a half ago, pre-diagnosis, I was in Vegas. I met my friends John and Doreen there, as well as a few other people. I knew I wasn't feeling right, but I went anyway, cause I really wanted see J & D.  I've known them since I was 20 and they are the best unconditional friends a person could ask for. I did let several years go by where I didn't talk to them. I blame myself and me being a dickhead. Sorry guys. I guess that is the plus of my cancer, I can use it as an opportunity to be the best person I can be. ( I said it was time to get deep). Anyhow, while in Vegas, I felt like crap. I got the worst chills and fever and went to my room at 7 pm on a Saturday night. Didn't make a single sports bet. The next morning I got up early and was meeting John for breakfast. People were concerned and wanted to know what was up with me. Walking through the casino to meet John, I had this oddly powerful feeling that something was really wrong with me and perhaps I was dying. Scared the crap out of me. I didn't tell John about this feeling, but did let him know I was going through testing to get to the bottom of my health issue. The diagnosis came a couple of weeks later.

The point of all this? The point is..fuck that, I am not dying. I am super happy about the meeting with the kidney doctor, and it's reinvigorated me to kick up the fight a notch. And that's my story. Thank you everyone. This is a team effort.

Rice Krispy Treats

Yum! Thanks Dana.

TGIF Part II

  • Chemo...uneventful. Nothing new from doctor. No one else getting treatment while I was there.
  • Blood work...annoying. Will not go back to this lab again. The woman doing the work talks and talks and talks, on things such as a baby possum that got into her house for two weeks. The smell of urine in her house finally gave it away. The only highlight was a guy who was getting blood taken. He was on the on the phone telling someone how he hates needles. Yet he had a whole bunch of tattoos. But those are "fun needles."  He also smokes a lot of weed, drinks a lot, and smokes a pack of cigarettes a day. He hadn't been to a doctor in 10 years, but he is perfectly healthy. How about that?
  • Kidney doctor...very good. The kidneys continue to make improvement and I can expand my diet a bit. This includes the occasional banana and occasional beer.  Thank you Leslie for keeping me focused on the diet and improving those kidneys. And thank you Beachwood BBQ for the celebratory pulled chicken sandwich and IPA.

TGIF

It's Friday. Doesn't really mean a lot to me at this point. Right now, the days seem to blend together. I do know that it's pay day today. I have chemo, blood work and an appointment with the kidney doctor. I'm hoping my diet can expand. But I will say that Leslie had tomato-free salsa and salt-free chips for us last night and it was pretty good. So I'm actually ok with my diet at this point.

I worked yesterday, but I felt myself fading at around 10. I was hoping to stay till noon. But I knew it was time to go home when I couldn't even muster the energy to get worked up during a conversation with a co-worker who just couldn't see the point I was trying to make. Sometimes I like getting fired up at work, but I just didn't have the fire in my belly. So I came home early and took a nap.

Wednesday, May 25, 2011

Quote of the Day

John DiNunzio, Bike Planner: " The mission is remission."

The Word of the Day

No! no to myeloma. no to this shit. I'm not fucking around.

Anyhow, worked for 4 hours today. Got  a couple of things done. I feel pretty good after yesterday's chemo. I gained a couple of pounds. And then I came home for a nap. That nap seems to be a real key component of every day.

Tuesday, May 24, 2011

Cycle Two

Started cycle two of chemo today. Fairly uneventful. Some good news....my kidneys continue to show improvement. Which means treatment is working. Blood count is down a little, which was expected...transfusion from two weeks ago has worn off. But doctor wasn't concerned and blood count is ok. Two other people were getting chemo next to me. Last couple of times, I was the only one there. A documentary on illegal whaling was playing.

I worked out for the second time. That was good.

not much else to report.  I'll go to work tomorrow for a few hours.

Monday, May 23, 2011

Work

It's Monday and I'm at work. For the most part, on days I don't have treatment, I come to work.  Typically I try to work till noon or 1. And then it's go home and it's nappy nap time.  I also put in some hours from home, answering emails or making calls.  I've only had one bad day at work and that was last week. I was sitting in a meeting and I could feel tiredness and a headache building.  Meetings generally seem to last forever. This one in particular really dragged on. I had an item I needed to discuss and it didn't come up until the end. But when that meeting ended, I knew I needed to get home. It was only 9:30 in the morning, but I was beat.  I didn't even want to drive myself home. So Matt Arms, who has been great through this process...watching Gracie when I was in the hospital and with Rich, doing a bunch of work in our yard, making it super low maintenance, since doing yard work is a no no for me and my weakened immune system. (Was what I wrote even a sentence or make any sense?)

Anyhow, Arms gave me a ride home and I had my second little mini breakdown about how much this sucks.  But then we started talking about when I can go to the Pike again for beer and fish & chips and that always makes me feel better.

Today I feel great and will make it to noon, no problem.

This week's schedule

After a week off from Chemo, I start Cycle Two tomorrow. Tuesday and Friday are my treatment days this week. We'll also meet with my doctor, Dr Phan (who we really like), tomorrow to review the results of my latest blood work.  A key marker he's looking at is kidney function. Improved kidney function means that the chemo is working.  Last time we met with him, my kidneys showed some improvement. So chemo is working.

We also meet with the kidney doctor on Friday. Just a follow up, to also review my labs.  Pretty straight forward.

Also, looking ahead, I have a consultation appointment on June 6 at the City of Hope. This is to discuss undergoing a bone marrow transplant process. But I wouldn't be getting bone marrow from a donor. They take my marrow out, clean it, and put it back.

Sunday, May 22, 2011

Friday's blood work

This past week I completed cycle one. Which means I had a week off from treatment. The only medical related appointment I had was getting some blood drawn on Friday. But that really pissed me off. I hadn't been poked by a needle in a week and that blood work reminded me about it. Plus some annoying ass lady was on her cell in the lab talking to her doctor about some antibiotic she needed for her infection. Really? Annoying. The anger lasted for the rest of the day.  I even went to lunch with my Mom afterwards and was stewing on the inside cause of the lab experience. Sorry Mom, I might not have been the best person to eat lunch with that day.  But as Dillon says, as long I keep the fire in my belly, I'll be ok.  Take that cell phone lady!

The big question

It took about two weeks to hit me, but Leslie and I were at chemo the other day and had just had a talk with the doctor. It wasn't anything different than what we've already talked to him about. But it all hit me, and I had the tearful "what'd I do to deserve this?" moment.  This things sucks! The answer though is that this thing is random. There's no reason. Stuff happens. But we'll deal with it and move on.

Numbers

The first time I read about MM, I was a little tripped out. Damn, this is some serious shit. But as my doctor reminds us, and as Leslie and I have talked about, I'm not in the typical patient category on this one. I'm an outlier. So we can't put much stock in prognosis, statistics, and all that other stuff. Yes...I want to know where I am with everything and I need to have all information, good or bad.  But these are just numbers.  I'd caution anyone who reads about this cancer to stay calm and not get hung up on numbers. Fuck those numbers!

The new normal

I just finished my first cycle of chemo. Trying to get into a routine. I like routines.  So far, no sickness from the treatment. My sleep at night is a bit jacked up. But my mornings are great. I feel good in the mornings, as good as I've felt for the past few months. Oh wait, those haven't been so great. Nonetheless, I have energy in the morning and try to do what I can when I have the energy. But I also am typically tuckered out in the afternoons. Naps and quiet time in the afternoon are key.

However, today was a little different. I worked out for the first time in a month. I won't go to the gym cause I need to avoid germ factories...like the gym. But Jenni created a home gym for me in the garage.Used it for the first time today. I was actually a bit nervous at first. Are my bones ok for working out? Will I get tired out after 5 minutes? etc, etc. But it was ok, good actually. It felt good to move and get the juices flowing. And it felt a little normal and nice, just thinking about what I was doing at that time, and not thinking about everything else.

About an hour after working out though, I was tired and needed a nap. It was only 10 am. So I took a nap. That is my prerogative. But now here it is, almost 6 pm, and I don't have the afternoon tiredness. Yay!

The lesson of today is that there is no new normal. Every day might be different.

words

surreal, tired, angry, disbelieving, revenge, oops, damn, wow, bullshit, focus, attack, lesson

and so many more

Ted Drewes Frozen Custard

http://www.teddrewes.com/home/default.aspx



Enbal, Blake, Sierra, and Hannah Support the Cause

One month ago, who had ever heard of multiple myeloma? Not me. Turns out that in St Louis a couple of weeks ago there was a Multiple Myeloma Research Foundation 5k.  In support of kicking myeloma's ass, my friends ran the 5k.

Two side notes: Blake runs in his bare feet and St Louis is home to the greatest frozen custard ever, Ted Drewes. Also not on my limited diet.


Kidneys

While in the hospital, I had a visit from a kidney doctor who told me kidneys are functioning at about 30%. Another fun side effect of myeloma. So on Thursday (only 3 days after being diagnosed), I had an appointment with the kidney specialist and was put on a weird ass diet. Low protein, no whole grains, low potassium, low sodium. Lots of white bread, fat, pasta, minimal dairy and some fruit.  That eliminates super nachos. Oh and beer is out too. Damn you myeloma!!!

Port-a-cath and X-rays

On Weds, May 4, it was back to the hospital for a couple of out patient procedures. First, I had a port-a-cath inserted just below my collarbone.  The port is used for IVs, it's a much more efficient way to administer chemo and saves the veins in arms from being abused.  I also had a whole bunch of x-rays. One of the side effects of multiple myeloma is that it weakens the bones and a lot of people suffer from broken bones. So I had pictures taken of every bone in my body. Waiting for the x-rays, the whole thing started to hit me. This shit is real.  Luckily my bones look good (that's what she said).and I don't have damage.


Here's what the port-a-cath looks like:


Chemo...huh?

I was diagnosed on Monday and started chemo the very next day. what the fuck? In my head I was thinking "ok I have the diagnosis and we'll start treating it in a month or so" But nope. Started right away.  The program is Tuesday and Friday for two weeks and then I get a week off. That is considered one cycle.  I need to complete 8 cycles. Doing the math, we're talking 24 weeks. Almost 6 months. The treatment is a mix of velcade (the chemo) and dexamethasone (a steroid).  I also have a steroid and antibiotic pill regimen for home. The chemo weakens my immune system, hence the antibiotics.

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000358/

http://www.nlm.nih.gov/medlineplus/druginfo/meds/a682792.html

Saturday, May 21, 2011

I should have stretched

On May 2, 2011 I was diagnosed with having Multiple Myeloma. My girlfriend Leslie and my mom were with me when I got the diagnosis. It's a bone marrow cancer that severely impacts my body's ability to produce blood. I'd been real fatigued for about 3 months and tests after tests came up with nothing. Finally I was hospitalized for a blood transfusion, and a bone marrow biopsy identified the problem.

The typical patient for this type of cancer is someone over 65 years and an African American, of which I am neither. I'm 49 and Jewish.

How did I get this cancer? We might never know. But in thinking about things, I wonder if my years of never stretching had something to do with it. All my life I've been pretty active...running, cycling, hking, gym, etc, etc. But I've never been a stretcher. Friends told me it would catch up to me. When I'd go to the gym with my friend Jenni, she'd stretch and I'd just stand there and tell her that Jews don't stretch. My nephew Dillon stretches several times a day and believes that is a real key to good health. Well, for him, good heath is stretching, trigger points, and coconut oil. He was actually visiting when I first started feeling weak. We just assumed I was getting old and out of shape.

People weren't kidding when they said it would catch up to me. I should have listened. Anyhow, this blog is the story of my adventure of battling the disesase. I have already started chemotherapy. And my calves are already smaller from the lack of physical activity. But I am about to start working out again. Doctor says I can do as much as my energy allows me to do. I'm also continuing to work part time.

It's going to be quite a ride.