Tuesday, June 28, 2011

Update

Finished up cycle 3 yesterday. It was just velcade, which I've handled pretty well. But yesterday it kind of tuckered me out and left me with a little bit of an upset stomach. Nothing that a long nap and anti-nausea pill can't take care of.  July 5 we start cycle 4, with a dose of Doxil on July 8. When we started this while process, we were aiming for 8 total cycles. So, wow, I'm almost half way there. I feel like something is working and happening.  Also of note is that there is a national shortage of Doxil, it's effectiveness and pharmaceutical greed make it tough to get a hold of. So Dr Phan is scrambling to get an order in this week, so none of his patients miss a treatment. He's pretty confident that he'll get it.

Leslie trimmed up my hair yesterday, so the mohawk is a bit more mohawk like.  Today I go back to work. I actually put in a lot of hours at home over the weekend. But today will be my first day in the office for almost a week, It's crazy how time flies.

Monday, June 27, 2011

Wrapping up Cycle Three

It's Monday and I have chemo today. This will end cycle 3. Next week we start cycle 4, including one day that has a dose of doxil. The Powerful Doxil!

I had a good weekend. Felt pretty good the whole time. I worked out a couple of times, ran errands, and hung out. We were going to trim up the mohawk but ran out of time.  Gracie decided she needs to bark a lot more doing the middle of the night and step on my head on occasion.  She was also scared by firecrackers at the park on Saturday morning, and hit the brakes and headed home. Yesterday it was all quiet at the park, but she refused to walk past it. Poor dog, she'll never want to go to the park again.

My uncle got a new harbor legal truck this weekend (well, a 2009). He bought it in Missouri and had a driver bring it here.  I'm pretty excited to see it, the new trucks are supposed to be pretty plush.

and that's my report.

Friday, June 24, 2011

A Story from the Local News Sent to me by David Olivo

I didn't know Jon Polito's name, but definitely know the face. In fact, he was in one of my favorite movies of all the time, The Freshman, with Marlon Brando and Matthew Broderick.

http://losangeles.cbslocal.com/2011/06/23/thinkcure-actor-jon-polito-managing-cancer-thanks-to-new-treatment/

Impatient

I do believe I've reached a new stage in my feelings about this here cancer thing....impatience. I'm ready to blast the living crap of myeloma, now!  We had an office visit with my doctor yesterday. Because of my brief hospital stay, my chemo was postponed this week to give my body a break. But to me, this sounds like we are giving myeloma a free week to do its work. Not good. The doctor (the expert) wanted me to complete cycle 3 next week, then I'd get a week off before starting cycle 4 and before getting doxil again....a week after its originally schedule date.  He said it wouldn't be a big deal and that I'd be fine. Apparently there are safety concerns with the chemo drugs, doxil especially, in terms of overdoing the infusion.  The toxicity of the chemo drugs has to be considered in the scheduling of treatment. So it's ok to delay treatment, but you can't speed it up.  The body needs the break.  But again, I am impatient and all these delays don't sound good to me.

Dr Phan's solution was to have me do my velcade treatment yesterday and on Monday we'll do velcade again and this will complete cycle 3. Then I'll get the rest of next week off (my originally scheduled week off). And on July 5, we'll get going with cycle 4 and another round of Doxil, right on schedule. Make sense? Or did I just confuse everyone? To put it in tennis terms, it's kind of like Wimbledon when rain delays matches. Normally the first Sunday of the tournament is an off day, but when there are rain delays, they'll play matches to get caught up. Yeah, this is just like that.

We're also still aiming for getting me ready for City of Hope and if it were up to me, we'd start that immediately as well.  But as Leslie and the doctor reminded me, stay calm, be patient, and we'll get to things in due time.

As for today, my plans are to work out this morning, do some personal organizing, and spend some good quality on a bike policy that I've been working on for the port. I'm so dang busy with other projects when I'm at the office that my bike planning efforts are really not where I want them to be. So I gotta crank it out today.  Oh and it's my weekly lab work today....results Monday.

Wednesday, June 22, 2011

Weds Update

Yesterday, it was back to work and today it is back to work. Pretty darn busy. Even if I were working full time, I'd be swamped with projects. So working half time, at best, it's getting tough to keep up. Which sucks, cause I actually like what I am working on. Yesterday we had a meeting to figure out how to get me support and help. I think we have it figured out.

I was supposed to be wrapping up cycle 3 this week, but because of my hospital stay, I am getting a break from chemo this week. We'll finish up cycle 3 next week. Tomorrow though, I do have an office visit with Dr Phan as well as with my primary care doctor, who's not really involved in the process. But I think insurance is the reason for that office visit.

Just took Gracie for a walk, ate some cereal, and now time to get ready for work.

Monday, June 20, 2011

Home

Got out around noon today. Fever and low blood count likely due to doxil doing its job. I feel pretty good today. And that's all I have to say about that.

Sunday, June 19, 2011

Weekend with a View

It's sunday evening and I am looking out across the city from my 6th floor room at Long Beach Memorial. Once again, I didn't expect to be here. Woke up saturday tired but ok. John and Doreen were in town for visit. Leslie and I went to breakfast with them and then came back to our house to relax and maybe nap a little. We thought we'd go out for dinner and I could rest up for it.

But I had to go and get a fever. Dr Phan said to keep an eye on fevers. Chemo + fever = something to watch. Leslie called the doc and he said go to hospital. We need to make sure I don't have an infection, which can happen while on chemo. Lots of lab work and lots of precautionary antibiotics....and no infection. But my blood count was low so since I am here, i got a transfusion today. Thanks anonymous donor. And since it is sunday, not a lot of doctors around to release me and I am here till monday. I did learn that it is common to get a fever two days after doxil. Good to know.

So John and Doreen and Leslie spent a lot of time here at the hospital. Fun for everyone! At least I have a good view, tv and my own room. But i will also say this: This sucks. The whole fricking myeloma deal sucks. I miss Leslie. I miss Gracie. I miss my house. I miss my friends. I miss being able to simply hang out. I miss being able to talk to family without them worrying, I try to minimize their worry. i would rather be able to talk about something other than my health. I feel like I've become a one dimensional, one topic person. A one trick pony, if you will. Boring!

But! This is all part of the process. Fatigue, fever, unexpected hospital visits. It happens. A couple of days in the hospital is worth the peace of mind and might simply go along with doxil. Yeah i hate cancer and yeah it bums me out, but I' ll beat it and in a few months when I am in remission, these couple of days will have been forgotten.

Friday, June 17, 2011

TGIF

Put in 5 hours of work today.
Had blood taken for weekly blood work.
Craving a big old juicy fatty steak. Please kidneys get better so I can have steak. Is that too much to ask?

Doxil-The Next Day

It's the morning and no walk of shame for me. Slept normal through the night. No sickness, I still have hair, and I just walked Gracie.  Maybe there's a delay factor, but seeing how I don't get Doxil again for a few weeks, maybe I'll be ok. I'll do it again today if that'll help.

Thursday, June 16, 2011

Kool Aid....I mean Doxil

Had my first treatment of Doxil today. Looked a lot like Kool Aid or perhaps Hawaiian Punch.  It added about an hour to my treatment time. But I feel ok. When I burp I get a funny little aftertaste, but otherwise, so far so good. Been hungry all day. I'm hungry every day.

Full house at the doctor's office today. Watched Secretariat. It was good. I actually had a poster of Secretariat in my room as a kid.

Wednesday, June 15, 2011

In Your Face Myeloma!

Did  a little experiment today. Matt Arms picked me up this morning and we took our bikes about half way to work. Then we rode the rest of the way in. It felt great! We went slow and got to work no problem. Then when I left at noon today, a friend, Bernadette, met me at work with her bike and we rode back to about where I started riding in the morning. We had some lunch and she drove me home the rest of the way. Yes! First time on the bike in a couple of months. I was pretty nervous and excited this morning,  If I can do this twice a week, I'll be real happy.

Took a good nap after I got home, but that's a good thing.  Tomorrow is chemo and we add Doxil to the mix. 

Monday, June 13, 2011

Ron Swanson!

Today

Started Cycle Three today. No Doxil today, we'll start that on Thursday.  My most recent lab reports were good. My blood count is up, to be expected with the transfusion. My kidneys have stabilized, not better, not worse. But starting Doxil on Thursday ought to whip those kidneys into shape.

I worked out this morning for the second day in a row and I've actually felt as good today as I've felt in a while. I also learned a real lesson (I can be a bit of a slow learner). If I keep myself vertical as opposed to horizontal, I get less fatigued and no headache.  Apparently giving in to fatigue simply leads to more fatigue. Exercise is also a good counter to fatigue. Man, I wish I could ride my bike to work. I miss it.

I've been off red meat and pork since last October, but today I woke up craving a hamburger. So I have to admit that after chemo, Leslie and I went and had a burger. It was pretty darn good. Sorry cows.

Sunday

Sunday I took Gracie to the Seal Beach dog park. Jim and Penny picked us up and we met Jen, Paul & Mocha at the park.  Penny is a black lab who we rescued from Uncle Jan's truck yard in Wilmington almost exactly a year ago. Jim works for Blizzard Entertainment (makers of World of Warcraft, perhaps the most successful video game ever) and which has to have the best work environment I've ever heard of. Penny gets to go to work with Jim 2 or 3 days a week. How cool is that? Jen and Paul are friends from the port. Gracie and Mocha took an agility class together last year.

Gracie used to like dog parks, but now she really doesn't care. She loves other dogs and loves to play. But get her in a dog park and she just hovers by the gate, hoping to escape to the car. For while she hid behind a park bench. Weird. Then we get back to my house and she decides she wants to play with Penny started playing which she could have done at the dog park. They both decided to jump the wall in our front yard to scare the daylights out of a poor woman walking her dog.  I need to do some refresher training with Gracie. I'd say it's overdo. Part of the problem is that Gracie thinks she is a person and we've pretty much spoiled her and allowed it happen. Oops.

Which brings me to Meetings 4 Mutts.  This was an idea I had several months ago, as a way to raise awareness and funds for pet rescue groups and the need to spay & neuter your pets. I had some big ideas for M4M, but pretty much it took a lower priority when I started to get sick. So I haven't touched it in a couple of months (yes....that's what she said).  But for a while it was good way to give some meaning to the myriad of meetings that are a normal part of my daily job.

And to give a little plug to two of my favorite groups, check out the SPCALA and For the Love of Animals, which is where Gracie came from.

Saturday Breakfast at Art's Deli

From left to right: Uncle Jan, Toby, Me, Ray, and Al.  Just what the doctor ordered.

Links

I have some weekend updating to do, but for now wanted to add a few links that were sent to me and make for interesting reading.

The new drug being added to my chemo mix is Doxil, take a gander.

A little more information about multiple myeloma and fatigue, which is a real nuisance.

A little outdated, but a motivational cancer story.

And some research on a dog's perception capabilities.

Enjoy your reading, pop quiz to follow.

Saturday, June 11, 2011

Last Night

Yesterday Matt Arms came over and did some work around the house for us. Mowed the lawn and drained the spa.  Stuff I'd like to do, but can't. Not because of energy, but because there is the potential for infection doing those things and I need to be careful. As a thank you, we had Matt and Rich over for dinner and Leslie made a tasty shrimp salad, quesadillas and it was all real good. We watched a few episodes of Modern Family which is some funny shit.

Aggressivity

Had our meeting with Dr Phan yesterday. He was a little disappointed about the kidneys. Who isn't? So we're getting more aggressive with my treatment, starting with Cycle 3 this week. We adding Doxil. The side effects are more of the stereotypical impacts. Hair loss, nausea, etc. That sucks, but we do need to be aggressive. The goal is to get me to the point where I can do the stem cell process. The long term prognosis is much higher with that process.  Goodbye hair, hello vomit. The doctor also told me to keep exercising and keep doing stuff. He said I need to fight off depression. I know, I know. This was a bit of a tough week, so I've heard that a lot this week. Just too pup for a walk and I will work out today. We'll get there.

Thursday, June 9, 2011

Blood

Alright, got my transfusion today. 2 units of O+. We thought it would take all day, but only took about 5 hours and I definitely felt better afterwards and actually had some color in my face and lips Just as a point of reference, a male should typically have a hemoglobin count of 15. Monday I was 8.4. The transfusion ought to get me up to 11ish.

I had the transfusion at Community Hospital in Long Beach. It's a small, old school hospital that was super quiet and nurses were super friendly and talkative. One nurse ran the whole show, she's been there 32 years and was cool. She had a Russian woman helping her today, and there was a bit of tension between the two nurses. Rocky vs Ivan Drago.  (side note, I heard a Broadway musical is being developed based on Rocky. But what I'd really like to see is the Book of Mormon Broadway show. Did you hear that Make a Wish?)


Leslie and I watched Modern Family, read, she did some spreadsheet work and I napped.  The nurses listen to an 80s station, and Tears for Fears was by far their favorite of the day. Some woman who looked familiar to me and Leslie came by who knew all the nurses and spent half an hour telling them about all her recent plastic surgery. They were pretty into it.  Weird.

The highlight though was lunch. Turkey and stuffing. It was fucking good. Best hospital food I've had....ever. I really loved the the stuffing. We're going to make some at home for sure. Lots of fat and empty calories. That's on my diet. Just need to make sure we use low sodium broth. Sodium=bad.

I've increased my liquid intake and I didn't think it was possible to pee more than I already do. But I am. Peeing=good.

I did read a couple of things that I shouldn't have read while lying there. Bad idea. It kind of got me down and made me wonder if I can do this. Fear & doubt=bad. So my lesson learned today is to focus on  the positive.

Tomorrow is Dr Phan office visit to discuss adding additional med to my chemo mix.

Wednesday, June 8, 2011

Change in Plans

Other than City of Hope, this was supposed to be an uneventful week. No chemo, no other doctors, nothing. I've gone to work the past couple of days for a few hours, but then have come home exhausted. Really exhausted. City of Hope did blood work on Monday and I was more anemic than I had been, so that would explain the tiredness. But today driving home from work I was so tired, I was thinking I could close my eyes at a red light and doze off. Not good. Probably should have asked for a ride home. Pride...I can do it myself!!!

Anyhow, got home and immediately took a nap, but the funny thing is that I didn't think I fell asleep, but nearly 2 hours later I woke up. Leslie called my oncologist to discuss the results of Monday's consultation and he said I definitely needed a transfusion to get more blood in my system. So that is tomorrow morning at 8 am. It's outpatient luckily, but still, I'll be getting 2 units so it's an all day affair. We also have an office visit Friday with my doctor to discuss adding another drug to my chemo mix. We want to get more aggressive in fighting the myeloma. Fuck that myeloma.  We need to get my kidneys working better, so I can do the stem cell process in August. So we'll see Dr Phan on Friday and I'll get an EKG, which is standard procedure before adding a new drug to the mix. It looks like next week when Cycle Three starts, I'll be getting more drugs. I forgot what the new stuff is called. It starts with a "D". Fine by me, let's be more aggressive.

So see that, what was supposed to be a quiet week, just got more interesting. 

Gracie had a sleepover at Matt & Rich's Monday night and apparently Rich was able to teach Gracie to fetch. I need to see proof of that. Her Mohawk is starting to fill in, but still looks awesome.

Tuesday, June 7, 2011

what else?

Let's see...what'd I do this past weekend? Saturday, rode the stationary bike, we took my mom out looking at apartments, and stopped at congregation ale house in long beach for lunch.  I had water. I think we found my mom a place. It's close to my house, resort like, has a pool and I think will actually be a nice place for me to hang out.

Sunday, went to Jerry's deli for breakfast with my mom and Uncle Jan. There's a lot of stuff on that menu that I wanted but can't have. I suppose I am learning discipline. A friend David came by for a visit Sunday. We were at UCLA at the same time, but I didn't know him until a couple of years later, when he was an intern at the port of los angeles, where I was working. We've been friends ever since. Common likes.... stupid jokes that we can tell over and over.  David had cancer while at UCLA and we talked about the shit life throws you. David also has triplets who are around 18 months old. Even before I got sick, we didn't see each much. But it was real nice having him stop by, and just talking about stuff.

I went to work for a few hours today. That was alright. I was busy, but not really into it, I was kind of focused on yesterday's stuff at City of Hope. Been napping and lounging ever since I got home. 

And that's my action packed, thrill a minute report.

City of Hope

Finally had my consultation at City of Hope. Wow, what a facility. First class all the way. Everyone is friendly, customer service is amazing...they provide a patient navigator to help maneuver through everything....and no waiting for anything. Lab work, check in, all that was so smooth. Very impressive. I'll be in good hands there, that is for sure.

Me, Leslie and my Mom drove out there. It's 32 miles from our house, up the 605 freeway. I checked in, gave blood and urine, we had a bite to eat, then met with the doctor.

So....the plan of attack is that sometime around cycle 5 or 6, I will undergo a autologous stem cell transplant process.  In theory, at this point in my chemo, the cancer will be going away, and what they do is take my stem cells out and blast them and me with chemo to kill all remnants of the cancer and then put the cells back into my marrow. This process, in combination with my normal chemo, is supposed to be pretty good in getting me into remission.  Obviously this is a simplified version of the process. And there are a lot of things that need to happen before we can do this process.  Also, during this process, I'd be in the hospital for 3-4 weeks.My immune system during this process is essentially non-existent. So I need to be isolated, monitored and kept away from anything that may infect me. I can have visitors, but they have to be healthy, and wear masks and gloves. Whew....pretty overwhelming right there. 3 or 4 weeks. That's a long ass time, but I'll do it. And then after the hospital stay, I'll need to stay pretty isolated at home for a couple of months.

And like I said, a few things have to happen before we do this. Number one is get my kidneys better. They've taken a step backward, so we need to get more aggressive on the treatment. Yesterday's doctor added a new medicine at home to treat the kidneys and is going to recommend to my oncologist that another chemo be added to my treatment mix. I pee a lot. At night I get up 4 or 5 times to go. So I've cut back on my fluid intake a bit. That's bad. Hydrating and keeping the kidneys with liquid is super important. So it's more water and more juice for me.  Peeing is good, and the more I pee, the better. So like I said, before we can do the stem cell process getting my kidneys better is super key. The kidneys is also what scares me a whole lot. When they talk permanent damage (which I do not have) and dialysis (which I do not need), that is pretty powerful. I'll drink more water, I'll tell you that.

My anemia is getting worse, which also doesn't help the kidney recovery process or my energy. It sounds like I might be getting another transfusion soon. Gotta get the blood count up.

And there is the whole tricky diet thing. Balancing between a cancer diet and a kidney diet is tough. They're like two distinct things, but have to work together.  City of Hope has nutritionists on site, and the doctor is going to hook up Leslie with that person. The patient navigator might also help with this.

All in all it was an overwhelming, scary and maddening day. But when I step back and think about it, it's a good plan of attack and one that will get me to remission. It's a long road ahead, but we'll do it. Not much choice on that.

Monday, June 6, 2011

Update Coming

I know, I'm a little behind on updates. But we got a whole bunch of information from City of Hope. A lot! So I need to summarize that and I need to summarize a visit I had this weekend from an old friend. Tomorrow I'll get up to date.

Sunday, June 5, 2011

Mornings with Gracie

The first words out of my mouth this morning were "god damn dog, I am fucking beat".  I was talking to Gracie. I think she gets it. I've mentioned before that my sleep patterns are jacked up. Last night wasn't much different, by around 4 am, I move from the bedroom to the living room, lie on the couch, watch some tv and dose off eventually. Gracie always joins me on the couch at this time. I've read that dogs have an extra sense and can tell if someone is sick or something isn't right. I wonder if Gracie knows what is going on. I know she does realize I am home a lot more.

I also know that dog therapy is real important. Having Gracie join me on the couch and taking our morning walks is important. We cruise around the neighborhood. I talk, she checks things out, and I come back from the walk feeling a whole lot better.

Yesterday was a good day.I worked out, then my mom came over. Mom, Leslie and I then went and checked out apartments for mom, who is going to spend a good portion of the summer in Long Beach. But no nap during they day, and I've learned that if I don't get the nap, I am beat by the end of the day.  

Friday, June 3, 2011

End of Cycle Two

Had treatment today. And did pretty much nothing else all day. It's 9 pm and I feel pretty darn good.  Tomorrow I work out, Mom comes to town and that's about it.

Cycle Three starts on June 13.

City of Hope Consultation on Monday

http://www.cityofhope.org/patient_care/treatments/myeloma/Pages/default.aspx

This Morning's Topic- My Angry List

For the most part I'm staying positive and upbeat about this whole thing. What else can a person do? But last night and this morning, I put together a list of what I am pissed about. Here goes:

  • having to get up 85 times a night to pee
  • today's rock
  • the headache I occasionally get right behind my eyes
  • the switch that flips from being awake to being exhausted
  • brett favre throwing the interception against the saints and then jacking up the 2010 season
  • the NFL lockout (I can't even watch the NFL Network because it's all labor talk and nothing about training camps and the upcoming season)
  • the one person at work, who almost maliciously, refuses to acknowledge that I am doing my job while battling cancer. ( this I will not forget)
  • not being able to sit and eat a super sized bag of sour cream & onion potato chips
  • not being able to mow my own lawn
  • seeing the empty bike rack at work and not being able to ride to work
  • forgetting to do stuff
I suppose that's it.

Thursday, June 2, 2011

A Tired Day

I didn't sleep so well last night. It happens. I sleep, wake up, read, fall back asleep, etc, etc.  But normally by the morning, I'm pretty well relaxed. Today I went to work and had a meeting with my immediate boss and our big boss. I just needed to get them updated on some of my projects.

I've noticed that my delivery has changed when I speak. I speak slower and once I get rolling with my information, I keep on going until I get everything out. It's almost like in my head I have a script of what I am going to say and I don't like interruptions. I figure with my low blood count and general tiredness from chemo, that I'm not as able to think spontaneously. Odd side effect. But my boss asked me a question today that wasn't part of my script and I think my answer/delivery was super slow, because I swear out of the corner of my eye, I saw him giving a pick up the pace sign. Man, maybe I actually dosed off while talking. It's possible I suppose.

Tomorrow is chemo...the end of Cycle Two. Then I get next week off from treatment before starting Cycle Three. I'm 25% of the way there. City of Hope consultation is Monday.

Wednesday, June 1, 2011

Mark Bixby Memorial Bike Ride

View from the Desmond Bridge

File this under: A Conversation I Never Would Have Predicted 4 Months Ago

Today I spent about 45 minutes talking to a co-worker who just returned to work this week after being out for several weeks as he recovered from having a portion of a lung removed due to lung cancer. His surgery was successful, but in a few weeks he'll still be undergoing chemo.

He was diagnosed earlier this year and had been bothered by a nagging cough. Our cancers are different and our treatments are different. But it was pretty darn interesting to talk to him about our similar experiences and emotions since our diagnosis. He's young, healthy, a non smoker and his cancer was totally random. We talked about this, how cancer really knows no bounds. It can hit any one at any time. But the thing is, you could be hit by a car any day of the week and that's pretty random as well. As an example, a few months back a local bike advocate who had been pressuring the port to include a bike path on a new bridge, died in a small plane crash at the Long Beach Airport. Two days earlier, he had been at the port, pressing his case. I spoke with him pretty regularly and we had a fair number of meetings. He was younger than me and his family had a long and substantial history in Long Beach.  I went to his memorial which included a bike ride to the top of the existing bridge. I've ridden up that bridge many times, taking people on tours to see what has to be the most impressive view of the port available. Anyhow, on the memorial ride I barely made it up to the top of the bridge. I just couldn't catch my breath. Who knew that a few weeks later I'd be diagnosed with cancer.

Which gets me back to my story. Eric and I today discussed how every day is a mystery and a bit of a gift. We talked about our initial shock when we got the diagnosis. We talked about how we weren't ready to die, how we have no choice but to be positive, and how we're taken aback by how nice people can be. All pluses in our fights. But if we were to turn back the clock to January, I never ever would have predicted this turn of events or this conversation. Life is funny and full of lessons.