Friday, December 30, 2011

Swim

I actually got fat last week doing the stem cell harvesting. Gained several pounds. Everything is tight. WTF? Talk about the atypical chemo patient. I gain weight, haven't lost hair, etc, etc. Weird.

Anyhow now that I'm feeling better and feeling like a cow, I have to work out fairly regularly. Exercise is also good for mind/body healing. For a while I've been thinking swimming would be the perfect exercise for me. It's all over movement and no impact on my bones. Doc Phan still says I don't need to worry about fragile bones, but I am still a bit paranoid.

So this morning, before chemo, I went with a friend to the local pool and swam for about 20 minutes or so. It was awesome. I'm definitely out of shape and now have sore shoulders. But it felt great. A perfect way to start the day.

Chemo again next week, then a 2 week break. Visits with Zoller and Berenson over next couple weeks.

Wednesday, December 28, 2011

Back to the routine

Yesterday it was back to chemo. Wasn't bad. I got a big dose of benadryl that makes me loopy, but also allowed me to get my first good night's sleep in a couple of weeks. The drugs I got during stem cell collecting seemed to stay in my system for a couple of days, and I hadn't been feeling good at night. But last night, felt and slept good.

I had an extra week off of chemo to do the stem cell harvesting. I was worried about how that would impact the cancer and my numbers.  But they stayed close to the same, which is good.  Hopefully this current round will kick some ass.  Next time we meet with Berenson, maybe we'll discuss moving into a maintenance program. I imagine that I'll have 3 or 4 more cycles and then it's maintenance. But what do I know?

Today it's back to work. Haven't been here in two weeks, taking me a while to get back in the groove and remember what I am working on.  I'll stay to about 2 or 3 today. Not bad, not bad at all.

Yay 2012!!! Let's end 2011.

Tuesday, December 27, 2011

Friday, December 23, 2011

Last day

Hooked up for the last time. I'll probably end with 3.5 million syem cells. That's enough for one transplant, if and when that happens. Seen a lot of the same people this week, each with their own story and experience. The lesson..... You never know what tomorrow holds for you, so do things right when you can.

Thursday, December 22, 2011

900,000 today

2.5 million total. One more day to go.

Day 4

Definitely tired and ready to wrap this up.

The prisoner is back. I hear he is donating his stem cells for someone else.

Wednesday, December 21, 2011

After three days the total count is

1.6 million stem cells collected. 2 more days to go. Going into this the concern was that my chemo drugs would make it tough to get stem cells. That is proving true. Originally the goal was 10 million, but now we're aiming for 2 million, which would be enough for one transplant.

On the positive side, my creatinin is down to 6.6....meaning my kidneys continue to improve and the cancer is lessening.

The night time shot I get is supposed to pump out the stem cells, but it also makes me feel crappy. Just two days to go. We're hanging in there.

Stem cell count

Only one million so far. It's slow gathering. Today could be the jackpot day.

Prisoner in the house!

Getting stem cell harvested all shackled up. I so want to know what his crime is.

Monday, December 19, 2011

Hooked up and collecting

9,998,100 to go.

I forgot to mention that when matt arms and I came for my shot saturday, a couple of sheriffs were escorting a patient out of the cancer center. He was in the orange jumpsuit and all shackled up, with a look of evil in his eyes....like hanniball lector. I guess prisoners get cancer too.

Stem cell harvesting begins today

The goal is to collect 10 million. It could take up to 5 days. I have no idea how they know when the target is reached. But i'll find out.

Friday, December 16, 2011

YeeHaw!

Great day today. We saw Berenson, and he said I am doing great and he's real pleased with my progress. He's happy, we're happy, I'm happy. Perfect early holiday present.

Also went to Cedars today for another shot in preparation for the stem cell gathering.  Next week is the actual gathering. And now, chemo will start up again on Dec. 27. Originally, it was put off until after new years, which had me nervous. But now I gained a week and will be back at it.

Thursday, December 15, 2011

Cedars

Started the stem cell mobilization process today.  For the next 4 days, we go to Cedars every morning for a quick blood check and a shot. The shot is supposed to boost my white blood cell count. Today it took an hour and a half to get to Cedars and we were there for 30 minutes. Starting Sunday we'll be staying up there. Monday morning, I get a new perm a cath installed, then a shot and then we start collecting stem cells. It ought to take 3-5 days. The goal is to collect 10 million stem cells for freezing. Each night next week I also have to go in to for a different shot...a growth inducer to help me produce more stem cells. Once we're done collecting, the perm a cath comes out. This cath will be into my neck, so I'll be sure to get some photos.

Tomorrow is also Berenson. Hopefully he's happy with latest results, and hopefully he'll calm my anxiety over my delayed chemo. Phan says it should be ok, but I'm still nervous about it. I want to keep blasting the myeloma and not give it any chance to rebound.  Leslie talked to Zoller the kidney doc today. I won't be seeing her till after new years, but she saw my latest labs and was pleased with the kidney improvement.

Here's what I am missing right now....Baileys. I love Baileys at this time of year, it's the perfect holiday drink. But no alcohol for me. So instead it's water, apple juice, and cranberry juice.

Wednesday, December 14, 2011

An Open Letter of Thanks

Happy Holidays,

I just wanted to say thanks to everyone.  I don't think I could have gotten to this point without the positive thoughts, kindness, prayers, wells wishes and faith of people around me.  I've received well wishes and prayers from so many people and that has meant a whole heck of lot. It's been powerful.  Nine months ago, I am not sure I would have understood the importance of all this. But it's huge and I really want to say thanks. 

I've still got a ways to go with my treatment, but I am clearly feeling and doing better.  I've learned some real lessons during this time and appreciate things and people like never before. It's been amazing to see how people have gone above and beyond to provide support.

Happy holidays and best wishes to all, Matt

Tuesday, December 13, 2011

Latest labs

I hadn't done any lab work in a while, but I did this weekend. Things are still looking better. My blood count is doing good, so no transfusion is needed. My creatinin is down to 6.9. First time under 7 in months, so my kidneys are slowly improving. Protein holding steady, still needs to be lower, but we're getting there.

Thursday I start the prep for my stem cell gathering.

Friday, December 9, 2011

Friday

wow, another week has passed. Time is zipping by.  Not much to report this week. I'm on a break from chemo. I won't restart until first week in January. Today I am doing lab work and I'll see the numbers next week. So right now, I have no idea how I'm doing...other than I feel pretty good. I worked every day this week. busy, busy.

Next week we see Berenson and will get more of an idea about how I am doing. Saw my cancer coach yesterday, which is really helpful. Keeps me focused on my health.

Later next week I start the mobilization process for my stem cell harvesting. Mobilization is a fancy way of saying I'll be getting daily shots to boost my stem cell production. Then on December 19 I'll get another perm a cath and get hooked up to a machine for 3-5 days to collect my stem cells. Once they are done collecting, this perm a cath comes out. So I won't have tubes hanging out of my neck for some indefinite period of time.  This is all happening at Cedars, and Cedars is paying for hotel room so we can stay right near the hospital.  So other than being hooked up to a machine for hours every day, it'll be like a mini vacation.

Saturday, December 3, 2011

Better

Ok, I'm feeling better. We spent the whole day at cedars yesterday. Blood work, xrays, pulminary test, echo, ekg.....all tests necessary to get insurance approval for harvesting my stem cells. We're aiming for the week of Dec 19. It will take 3-5 days, done as outpatient. With the holidays, my chemo schedule is getting messed up, so now is the time to do it. I hate the thought of missing chemo, but Phan says it should be ok and we'll keep a close eye on my numbers.

Monday I have an appointment with my boss and H.R. I definitely need some answers about my time off, so I can do some planning. It's crazy that they make it such a mystery.

Today, going on a short bike ride with matt arms. I've been riding the stationary bike a bit, so the real thing should be ok.

Friday, December 2, 2011

Argh...

Vent time.  I'm still doing good. Had chemo yesterday, now it's break time.  We'll do complete lab work in about a week to get some numerical results.  But at the same time, this week has been a mentally draining one.  Going back to Cedars today to do some tests and work ups that would all be used to get insurnace approval for harvesting my stem cells.  Logistical problem though....I want to do the process during my off weeks and not miss any chemo.  But with the holidays coming up and likely approval timeline, seems like I might be pushing back chemo this month. I don't like that. And then as of the first of the year, my work is changing insurance provider. The decision was made with no apparent consideration on what it might mean to people currently being treated.  My current insurance has been great, they've approved everything in a timely fashion. I've heard nothing good about the new provider and they'll likely question much more of my treatment..which we already know is not traditional.....I have my own special chemo mix.  Meanwhile at work, I'm dealing with our H.R. who is doing very little to help me not worry about getting paid and being insured.  I've got a meeting scheduled Monday with H.R. and my boss to discuss.  There shouldn't be any glitches and everything should be ok, but they make the process so unnecessarily convoluted and frustrating.

Thus...Argh!!  Between scheduling and insurance and work and being over 7 months into this, my brain is at capacity.  But I need to remember I'm doing better and have made some giant improvements over the past few months.