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.

Monday, November 28, 2011

Post Thanksgiving

Happy post thanksgiving everyone. Leslie, Gracie and I did something different this year. We got in the car and started driving. We haven't been anywhere since I was diagnosed and thought it'd be nice to get away.  We ended up in Pismo Beach. I don't think I'd been there before. It's beautiful. We got a hotel room at the Spyglass Inn, with a beach view and they allows dogs. We had a non-turkey dinner from the restaurant and it was great.  I'm feeling good and it was awesome to get away and not think about cancer for a couple of days.  We got home Friday night and I was basically pooped out the rest of the weekend. But well worth it.

Today it was chemo. No treanda this week, so the treatment is very short. I go again Thursday and then I have two weeks off. Dr Phan is letting me not do labs this week...so no worries about the results.  Tomorrow we go back to Cedars to discuss more about harvesting my cell stems. At the very least, it would be good to freeze those suckers.  We'll see what they say. If possible I want to do it during week two of my 2 week break.  I don't want to delay my normal chemo cycle.

Also tomorrow at work is a meeting that I scheduled and really want to be a part of. If we can get out of the doctor appointment on time, I might be able to make it back to the office in time for the meeting.  Hopefully, timing works.

And that's about it. Continue to feel good and make progress.  We see Berenson in a week or so and that will give me a better idea of my status.

Wednesday, November 23, 2011

Whew

hi Blog,  I'm back. Platelets were up today, so I was able to do chemo.  Been napping since I got home. That stuff knocks me out. Don't call it a comeback.

Busy day at Phan's office, lots of new faces. Watched Battle Los Angeles.

that is all.

Tuesday, November 22, 2011

Remember me?

Hello blog. Yes it's been several days since I last wrote. Not much to say. Did blood work today. Supposed to resume chemo tomorrow...assuming my platelets are back up. Am I nervous and anxious? Why yes I am. I can't miss another treatment. Seems like that would give the myeloma a chance to rebound. By nature I am an antsy, anxious worrier....partly explaining how myeloma was able to take root to begin with. So I need to think positive thoughts....high platelet count. I am still feeling pretty good. Been working out.

Well blog, that's all I got. I'll fill you in tomorrow after chemo.

Friday, November 18, 2011

Damn platelets

Well, here's a first. Went to chemo today but couldn't do chemo because my platelets are too low. Why are they low? They're low because of chemo. So I have to wait a few days for the count to go back up. Argh. I hate waiting and I hate missing treatment. Funny that yesterday, we saw the cancer coach and she reminded me that this is a curvy road and to stay focused on the big picture, not little twists and turns. And just like that, here's a curve that I can't let myself get all bothered by. Breathe.

Anyhow, instead of chemo, we went and saw Jack & Jill, an Adam Sandler movie. We had low expectations but it turned out to be funny.

Monday, November 14, 2011

Representing

Here's a photo from my buddy and bike planning guru, John DiNunzio.  It's from his annual bike camping trip. Next year, I'm there.  Take a close look at the flag. Awesome!

Back to chemo

After two weeks off, I'm back to chemo for the next two weeks. Tuesday and Friday this week. Should get some lab results tomorrow and we'll see how I'm doing during my off periods. Still feeling good.  At work today.

Friday, November 11, 2011

Finally the week is over

Way too many appointments this week.  Today it's capped by a blood transfusion.  I didn't even realize I was low.  Physically I am feeling pretty good.  Mentally though, I'm worn out and grouchy. Way too much conversation this week about my kidneys. Those fucking kidneys.  Saw doc Zoller and she's a downer and got me all worried about the long term condition of the kidneys.  Had a consultation on stem cell transplants, but the problem is the kidneys.  Yes, the cancer is getting better and we've found a treatment that works. That's good. Yes, the kidneys have shown improvement and I've been able to avoid dialysis. But when I get paranoid and worry about the long term prognosis, it bums me out. Dialysis sounds like a real impact on quality of life.

Monday, November 7, 2011

Berenson......check

One appointment down, two to go. Berenson was happy with my progress and recommends we not change a thing in my treatment.

The week ahead

Feeling good, entering week 2 of my break from chemo. Busy week ahead.  Today is Dr Berenson. Tomorrow is a new doctor, Dr Lill, to discuss stem cell options.  Weds is Zoller, shot caller, to see how kidneys are doing. We know the kidneys are improving, so let's see what she has to say.  Oh, and of course blood work today.

At work on Wednesday, there is an early thanksgiving potluck.  I'm making a chorizo/apple stuffing. I love stuffing.

Thursday, November 3, 2011

We have photos!

Here are some pictures from yesterday's permacath removal.  On the larger chest xray, you can see the portacath and permacath working their way to the heart. Trippy!!



Wednesday, November 2, 2011

Perm a Cath out

It took all of two minutes. A local anesthetic and it's gone. And more good news, my latest labs showed my creatinin at 7.08. Last week it was 7.7.  It needs to be around 2, but we're definitely heading in the right direction.  And as I've said before, improving creatinin means improving cancer.

This good stuff was needed because I woke up with a bit of an attitude problem today.  I didn't sleep well, I'm off of chemo this week and next, yet I have appointments and stuff almost every day. It's kind of wearing me down and getting annoying. Getting the permacath out and the positive lab results was the pick me up I needed.

Yesterday we saw Dr Durie, another myeloma specialist. His name is actually used in a myeloma measurement term.  Whereas Berenson isn't a believer in stem cell transplants and feels that meds & chemo can do the trick, Durie is more a believer in stem cell transplants. He's not necessarily an advocate, but he does feel it offers benefits to some patients.  Based on what he saw, I may be  a good candidate for the process.  We had thought that the drug treanda, which is effective, is changing up my dna and making a stem cell transplant not an option.  But it still may be.  We've got an appointment next week with a specialist in the process to discuss if I can or should harvest my own stem cells.

Stem cell transplants is a pretty intense process.  Your body is utterly blasted with chemo, so there are some hazards to the process....but I'm young and healthy (funny to say that) and should be able to tolerate it.  However, we've also come upon a chemo treatment protocol that is working. So would I want to interrupt that to do the stem cells? That's a tough one.  Friday we're meeting with Phan to discuss. Hopefully he can bridge the gap between Berenson and Durie.  Two very different approaches.

Durie

Saw Dr Durie, a myeloma specialist at Cedars Sinai. I'll provide summary later. All good. But just know that right now I'm tired of doctor visits. Tired of being tired. Tired of having cancer. Just venting. I could have it worse and I am slowly improving.

Sunday, October 30, 2011

Halloween

I've said before that this myeloma experience has changed me and Leslie.  Here's some visual proof.....



Friday, October 28, 2011

Another new patient at Phan's office

We met someone new today. He was just recently diagnosed with throat cancer and is doing radiation and chemo. It's all new to him and pretty scary. He's much younger than me.  I am definitely the old timer now. We talked with him and his girlfriend for a while about our experience and how things are going.  He also told us about an awesome sounding place in Redondo Beach that provides all kinds of great services to cancer patients. Definitely going to check it out.

Also at chemo today was an older man, who we've seen before. He's in his late 80s and had some real hygiene issues today. They gave him his chemo in a separate room. It was sad to see.

So kind of a sobering day. Sobering in that it really reminded me I have cancer. But also sobering in that I don't have it so bad.  I'm doing pretty darn good.  I was also pretty scared at the start of all this but its become pretty routine. We talked to Phan about my future and our goal with chemo.  The mission is remission but there are also other targets to shoot for, cause I have a life to lead.

Wrapping up cycle 3

Today is chemo. It's the last day of cycle 3. Then I get a two week break, which I am ready for. That chemo tuckers me out. Although we haven't talked about this with Berenson, I imagine I'll be doing this routine through new years.

Tuesday we go see Dr Durie, another myeloma specialist. We aren't going to change anything right now but want to talk to him about the future and opportunities for stem cell transplants.

Weds the perm a cath gets removed.

Wednesday, October 26, 2011

Bye bye perm a cath

Doc Zoller is a funny one. She calls at interesting hours. It's 8 pm and she just called Leslie. But it was a good call. We've scheduled removal of my perm a cath. One week from today, weds nov 2. Far out!

More numbers

Today we got the results from the UPEP lab work. This tells us the percent of bad protein in my urine. The lower the better. This week it is at 51%. Two weeks ago it was at 63%. More progress! Yay!

Tuesday, October 25, 2011

Triple entry day

That's a first. That's what she said. When I was first diagnosed, I saw absolutely nothing positive coming from this experience. I saw nothing to learn from the fight. I was pissed in fact. But, I have to admit, I've learned a whole lot over the past several months. Tooting my own horn....I'd say I am better person and appreciate things a whole lot more. Of course, if my positive results became negative, my tune might change. But that aint gonna happen. Visualize positivity, exercise, avoid stress.... Recipe for healing.

Meet Princess Lola Ali

Matt and Rich rescued Lola this past weekend from the shelter. She's a bull mastiff and ought to get up to 90 to 100 pounds. Gracie hasn't met her yet, but is in for a big surprise.

Latest labs are in and

we're making progress.  Creatinin still too high, but down to 7.7. It had been 8.4. Bad protein is down to 2,500. Two weeks ago it was 3,400. My blood count is over 10. All good stuff. We're getting there.

And hopefully next week the perm a cath comes out, which means the exercise for health program starts up. All part of kicking the shit out of myeloma.

Monday, October 24, 2011

A story about fighting myeloma

David Olivo sent me this link and should provide me with good motivation to get back on my bike.

Sunday, October 23, 2011

Sunday ho hum day

Vikings lost. Lazy day. Tired today. Yesterday felt great. I think its the chemo that has me tuckered out. Blahhhhhhh

Friday, October 21, 2011

TGIF

TGIF doesn't mean a whole lot to me. I often am not sure what the day is. Not that I 'm confused, it's just that days don't mean much. I was in the office a couple of days this week. Felt great. I got a transfusion one day and I had two days of chemo. What day these things happened is irrelevant. The important thing is they happened.

Work is crazy busy. But it's busy with stuff that I'm not thrilled doing. And it prevents me from doing what I'd rather by doing, which is planning bike paths in the port.

Speaking of bikes, I've set a goal that before the year is over, I'm riding to work and home. The entire length.

We talked to Zoller today, next week we schedule removal of my perm a cath. Likely the first week of November. Hot diggity dog! Hello shower....how I missed you. Hello stand up paddle boarding. A friend will be teaching me how in early November. But the perm a cath has to be removed first. My fistula is all healed. I now have a super vein. Still no dialysis.

And that's my story.

Wednesday, October 19, 2011

Stuff

Yesterday it was back to chemo. No problem. With my new drug regimen I get a huge dose of benedryl. That shit knocks me out. I get loopy, which is fun, but then I get tired. So I napped through most of chemo and came home and went to bed for the night. At 6 pm. My lab numbers were ok. No major improvements, but stable. And I continue to feel pretty darn good.

Tomorrow I am getting a blood transfusion. I'm a little low on blood. While I am doing that, Leslie will go to my work to listen to what our soon to be new insurance provider has to say. No one is happy about the change, it's a money saving move by the city. But it's being forced on us and naturally those of us in the midst of health issues are worried what the change means for our treatment. Insurance up to now has been awesome.

One side note....Dr Phan seems to have a fair number of new patients, all with some sort of blood cancer. Not necessarily myeloma. But it makes you wonder about our environment and what sort of toxic crap we're exposed to every day.

Tuesday, October 18, 2011

Back to chemo

I've just finished a 2 week break from chemo. I've been feeling pretty good. Two bike rides in the past 3 days, no fevers in weeks, working, not nearly as fatigued as I had been. So something good is happening. Lab results are starting to confuse the heck out of me. So many numbers, less sure now what they all mean. Oh well, I feel better.

But today it's back to chemo and I'm ready. I worry during my breaks that we're giving the cancer a chance to rebound. The purpose of the breaks is to give my body rest,but I'm ready to get back to it. Let's blast the crap out of the myeloma.

Saturday, October 15, 2011

Day 1 of Visualizing

Went on nearly 30 minute bike ride with Matt. Slow pace and flat but felt great. Freedom.

Tried using relaxation technique to go to sleep last night. Seemed to work. I didn't get past my knees and I was out. And feeling rested today.

Question... Anyone claiming the Viking fleece blanket I got for my birthday? It had no name on it and I threw out package with store name. So whoever sent it, thank you....I've been using it.

Friday, October 14, 2011

Must visualize health

We saw berenson today. As I wrote earlier this week, I've been tired and I was worried aout today's visit. Well, It was a mixed bag. The cancer isn't getting worse, it is getting better. But the doctor was hoping to see more drastic improvement. My kidneys are still an issue. But we're staying on the current path, with a couple of minor tweaks to medicines.

So I went in to the appointment with mixed feelings and got mixed results. I need to learn to positively visualize things. Picture the kidneys being better. Picture several months from now, me being cancer free. Mediate, visualize, make it happen. Join the mental and physical. Keep focused on the goal. Think about my happy place. This is all new to me. But I got to do it.

Thursday, October 13, 2011

Fast Week

Thursday night already. Where did the week go? Anyhow, tomorrow is Berenson. I'm a little nervous about it. Nervous about if I'm still improving.  I've been a little more tired this week, so that always worries me and makes me paranoid.   My red blood count is going back down, so that would explain some tiredness.  Leslie has been giving me shots all week for my white blood count. Not sure what impact that has. And my kidneys are still not great. So add it all up and it equals tired and paranoid.

Monday, October 10, 2011

Leslie did it. High five Leslie

Today's Monday. The birthday weekend is over. I still feel good, but opted to not go in to the office and instead stayed home to rest. I broke my five day streak.

This morning I had to go to the lab to give blood and get the container to start my 24 hour urine collection, which is much more tolerable doing at home than it is at the office. It's not a lot of fun carrying a cooler of pee around work.  Blood and urine tests are fairly typical for a Monday. Plus we see Berenson later this week and he needs to see the most recent test results.

What was different today is that I had to get a shot to boost my white blood cell count.Chemo brings it down, but until now it hadn't gotten so low that I had to get a shot. We went to Phan's office today for the shot. But it is something we can do at home. It's only for five days that I need to do it.  So at Phan's office, Leslie practiced. She loaded the syringe and gave me the shot. All without question and all without feeling flush or faint. She did an excellent job. Didn't even hurt. I was impressed. Good job Leslie!

Tomorrow back to work.

50 The birthday weekend...Sunday

Sunday, funday. Football day. The actual day of my birthday. Another perfect day.

In the morning, John, Doreen, Tom and Lonna came to the house and made breakfast for all us. Eggs, bagels, and lox. My brother Seth and nephew, Jared, came over as well and ate and hung out. It was like an old fashioned football Sunday morning. Loved it.  John and Doreen live in Tucson. This was their third visit since I got sick.  The first time they were here, we went to breakfast and then I had to go to the hospital. The second time they were here, I had just gotten out of the hospital and was pooped when they here. Those two, plus Tom & Lonna, were who I was with in Vegas several months ago when I was feeling like pure crap and went to bed at seven on a Saturday night.  They saw with their own eyes me go from having fun to being feverish followed by chills.  So what made yesterday even more special was that they were here, I'm improving and I felt great. I tried to give a thank you toast but I got choked up and was on the verge of crying. I've cried a lot over the past six months and opted not to this time...so the toast was a short one. It was also the first time I've seen my nephew since I got sick.  He's taller than the last time I saw him and he's a real nice kid. Kid? See I am an old man.

At our house Tom and John prepared brauts for a barbecue that my mom was having was later in the day.  The things were soaked in beer and onions. And when grilled, were super good and super tender. Tender not being a typical braut descriptor. My mom usually lives in Berkeley, but she got an apartment down here in Long Beach to be close to her youngest son when he got sick. It's got to be tough to be a mom with a sick kid, no matter how old the kid is.  Now she lives just a few miles from us. The bbq....you guessed it.....perfect. Family, friends and food. Oh and some tequila, although of course none for me.

The day ended around 6 and it was time for home and time for bed. I was pooped, but had a great two days. thanks, thanks, thanks, thanks everyone. The two days meant more to me than I can say. Truly uplifting.

50 The birthday weekend....saturday

I think I've written before that I was turning 50 this year. It's pretty momentous. I was super excited about the prospect. Until I caught the myeloma. It kind of took the thrill away. But as it got closer and as I saw positive results in my battle, some of the excitement returned. Still, I hadn't really planned anything. But Leslie did it for me. She planned a day trip on Saturday with Matt and Rich.  We're fans of the show Diners, Drive-ins & Dives, where the host goes across the country to basically eat. We talk about wanting to take a road trip to eat at some of these places. Well, my birthday road trip was a trip to a place called Oinster in Eagle Rock, about 40 miles from our house. Pulled pork, burgers, pastrami, and more. I had pastrami. It was awesome. Rich had probably every one's favorite, the Royal Burger. Burger, pastrami, and chili all together.

The road trip didn't end there.  I love ice cream. Love it. But dairy is on the prohibited list due to my kidneys. Unbeknownst to me, Leslie talked  to Zoller and got the ok for me to have some ice cream, to break the rules for one day. So from Oinkster we drove the Farrell's Ice Cream. It's an old fashioned ice cream parlor. We used to go as kids for birthdays. Ice cream sundae for me, with marhsmallow and chocolate sauce. Heaven.

We hung out at Farrell's game area for a while and then head home. I was tired but had the perfect day.





Saturday, October 8, 2011

Perm a cath

I asked doc Phan about getting my perm a cath removed next week. He said if it were up to him we 'd get it out for sure. But it is Zoller's call and doesn't want to step on her toes. Step on them, I say. Waiting for Zoller to return our call.

Ho hum week

Twas an uneventful week. I worked all 5 days....that's a first since I caught the cancer. Saw the cancer coach who said to not work too much...that my energy should be focused on getting better and not expended at work. She also recommended I try acupuncture.....help with healing and relaxation. Dr Phan, though, not thrilled about the idea....it exposes me to risk of infection during a time when my white blood count is low from chemo and I am susceptible to infections. Speaking of white blood count, I got a shot to help with that and for the next 5 days will be administering the shot at home (probably team effort...me and Leslie). Shots at home...a first...but not a big deal.

My 50th is sunday. At work this week, my smaller work group had a lunch for me. Had cake with the larger group. It was pretty darn nice of everyone. Leslie has a mystery day trip planned today and Sunday is a bbq with friends and family.

So, as the post's subject indicated, it has been a ho hum week....and that is great.

Tuesday, October 4, 2011

7 Hours!

7....seven....one more than 6.  I actually spent 7 hours at the office today. That's a record. I even went to an afternoon meeting and not once during the meeting did I think about being tired, fatigued or worn out. Because I wasn't. I felt good. This for sure is progress.

I am getting some weird cramps though. It's almost like a cramp from not eating enough bananas (potassium) during some long physical event. The cramps hurt, but I can't have potassium. Might need to ask Phan about this.

But the key point is that I worked nearly a full day today and I'll be back tomorrow.

Monday, October 3, 2011

Brain fart

I worked today. The goal was to stay till 3. I made it to 2 and then was exhausted. Needed to get home for nap. We'll try again tomorrow. Right now it's about 7 pm and I'm beat and a bit naseous. My temperature is good. So I think it's just a delayed reaction to chemo.

I finally made an appointment with the cancer life coach today. I'll be seeing her thursday. There's a book she recommended I read. I stopped at book store and had to order it for shipment to my home. But when ordering it, my brain went dead, I couldn't think of my address for the life of me. I actually had to get my license out to check my address. That's sad.

Saturday, October 1, 2011

insomnia

I'm feeling good, stupendous, fabulous, encouraged, motivated, stoked, jazzed, and all that. We saw doc Zoller today, she's a baller, a shot caller. Normally she's the bearer of pessimistic news regarding my kidneys. But today she actually smiled and gave positive news. While my creatinin is still high and we won't know long term kidney status for a while, my kidneys are showing sign of improvements...slowly getting better, slowly showing fewer signs of the cancer caused protein. So Zoller was happy for me and for my progress, and even eliminated one kidney medicine, The downfall to her positivity is that it caught me off guard. She said 4 more weeks till we take out the perm a cath.....and idiot me said ok. If she had been her normal bad news self, I'd of been ready and fought to have it out in 2 weeks. I still might call her this week coming up and push for 2.

The down part of feeling good, and of having steroids today (well technically yesterday), is that it's 2:30 and I can't sleep. This wouldn't be so bad, except we're having a yard sale today and we need to get up early to set up. Me don't want to be tired for the sale. It'll be fun and perhaps profitable Maybe our sign should say Cancer Sale....then we might really clean up. I had some sleepy time tea and that got me a couple of hours of shut eye. And now I'm kind of hungry but don't think Captain Crunch at 3 am is the best idea. Oh quick side note, when I first got sick I weighed 205. This morning I was 186.  I notice it the most in my shorts (TWSS).....they're all so baggy now. But I don't think I look sickly or skinny...hence the man boob in the perm a cath photo.

And that's all I got. I need to sleep.....wish me luck.

Tuesday, September 27, 2011

Another double entry day


You're looking at a picture of my perm a cath (and my man boob). It's a couple of tubes that are connected straight to a major artery.  I've had it since mid July.  It has to be flushed every week or two, can't get wet and carries a risk of infection. We had it installed when I did plasmapherisis. It stayed in, in case I was to do dialysis. However, I now have my av shunt also known as the fistula....which said repeatedly can lead to a number of double entendre jokes, Double fistula, if you will.   But with the shunt, the perm a cath ought to be removed in a week or two. Yes!

Today it hit me. I'm taking my kidney meds, I'm sticking to a kidney diet, and I'm flushing. But the kidneys are not quite seeing the improvement that the cancer is. So what's the missing ingredient? Exercise, of course. I walk Gracie sure, But that's it. I haven't really worked out since I got the perm a cath. I don't want to sweat on it, I don't want to get an infection and I can't shower....bathes only, which is working. But I did a little research on the internets today and exercise is good for kidney disease. I need to exercise. So once these tubes are out, we'll start slow. Ride a little, lift a little, maybe even swim....which won't put strain on my bones. I need to attack this kidney issue. Fuck you myeloma and the kidney problems you've caused. But I've got it under control.

chemo day and lab results

First, latest labs. The bad protein in the urine is down to 2,700. Good news. It had been 6,500 at one point. 2,700 what, you may ask? Heck if I know, but the number is going down and that's real good. My red blood count went up to 10.6....that's as high as it's been this whole time.. Normal is about 14 and my low was 6, a couple of months ago. Creatinin is still way too high...7.9. so the kidneys aren't following the trend. But I'm not on dialysis and everything still works. Friday we see Zoller the kidney doctor.

When the kidneys do improve, here is what I plan to ingest....mac & cheese, pizza, blizzard from dairy queen, quesadilla, and cold beer.

Chemo was uneventful. No treanda today, so it was a short treatment...just a couple of hours. No drama in the doctor's office, but there was another new person getting chemo. Cancer takes no holiday.

Vikings are 0-3. They blew another halftime lead. What the heck? Give Peterson the ball!

Monday, September 26, 2011

Monday already

Damn, the days sure do blend into one another. It's Monday. And it's almost October. I'm going to work today, although I am tired. Tomorrow is back to chemo, so I'm right in the thick of it.  Stopping at the lab on the way to work and tomorrow I'll have the results. Come on treanda, keep doing your magic.

Later this week, it's the kidney doctor and the av shunt doctor.

Friday, September 23, 2011

steroids

Another component of my infusion chemo is the heavy dose of steroids that I get.  dexamethesone. This equals irritation. Steroids increase my irritation level....plus I imagine I'm no longer qualified for Olympic competition.

Fun stuff. But getting better and that's the key.

Neuropathy

When I first started chemo way back when, I was told that one of the side effects could be neuropathy. Basically, neuropathy is when the nerves in the fingers and toes lose feeling. For some folks it can be real painful. For others it means they can't button their own shirt. I had associated neuropathy with diabetes.  But as I said, it can be a side effect, albeit temporary, from chemo.

I've been lucky that up to now I haven't had it. But since starting treanda I do have it. But I have a minor version. It's not painful and doesn't prevent me from doing anything.  However, everything I touch feels the same. Everything has a rough texture feel.  Very odd sensation...nothing is soft, nothing is smooth. Clothes, paper, Gracie, Leslie, keys on the computer, my own skin...all feel the same......rough.  The feeling went away during my off weeks from treanda, but now that I'm into cycle two, it's back.

I had treanda today. Tired me out, it's doing it trick.

No new lab results. I'll be doing blood and urine tests this weekend, with results on Tuesday. An older man fell in the doctor's office today. He was trying to get up ofter his chemo. Leslie jumped up to help. I was hooked up to the IV and napping. He's Turkish and neither he nor his wife speak English. His sons showed up to translate between he and the doctor & nurses. He was taken to the hospital. I don't think the fall hurt him, but whatever his cancer is and the chemo are taking their toll.   My guess..I'm not a doctor.

Wednesday, September 21, 2011

Double Entry Day

And the response to the subject line would be?

Any how, I don't update my blog as much as I used to. The thrill is kind of gone. And who wants to read about my anger (although anger has subsided quite a bit) and worry and stuff like that?  But I do update it with key information.  So today I thought it worth noting, that I'm at work today and for the first time in months, I am working past noon. I'm taking a lunch break, just like regular people and then I'll continue working after lunch.  We'll see how I do, but so far I feel pretty darn good. It's a beautiful day!

Progress? It would seem so.

Yesterday was chemo day. The start of Cycle Two of my new regimen. The night before chemo I never sleep that good, because I know I am going to get my latest lab results.  Nervous time....always.  Plus yesterday morning I woke up with a headache, and that set off my paranoia that the cancer had migrated to my skull.

But everything is cool. The headache is gone, we can do a brain xray to calm me down, but Phan assured me I'm ok.  Lab Results?  Positive.  My hemoglobin (red blood cells) is up to 10.  Typically through this whole process I've been in 7s and 8s. Once I was down to 6. Normal folks are 13-15. So that's awesome improvement. It means my body is producing blood and the cancer isn't immediately chomping on it.

The bad protein in the urine is down to 3,000. I had been up to 6,400.  Last week it was 3,500. So more progress. Fuck yeah, mother fucker....myeloma Schmyeloma.

My creatinin is 7.5. Not good, my kidneys are still jacked. But I'm holding steady and still not on dialysis. That's good news.  My AV Shunt is healing....so maybe in 3 or 4 weeks I can get the tubes out of my chest. That'll be nice.

When I first started chemo back in May, it was a pretty nerve wracking experince.  I didn't have the port a cath, so drugs were given to me straight through an IV into the arm.  The nurses introduced me to a guy named Steve, who showed me his port a cath and explainned how it works and that it's not a big deal.  The thought of a permanent thing under my skin on the chest was scary.  But now, going to chemo is no biggie and the port a cath is way better than having a needle stuck in my arm every time. And now the tables have turned. There was a woman in chemo, and her husband, yesterday, who was getting her first treatment.  This time the nurses asked me if i could show the port a cath to them. She was going to be getting one, and naturally had a lot of questions.  I think I calmed her down a little bit. Funny, how cancer patients are all part of the same team, a fraternity if you will. And I don't even like fraternities.  Life is funny. But I feel good, it's a beautiful day and we seem to making progress.

Friday is more chemo and more treanda. Bring it on!

Sunday, September 18, 2011

Field Trip

Yesterday I went with Matt to the Reagan Library in Simi Valley.  It's about 60 miles from home. The highlight....the actual Air Force One plane. That alone made it worth it.  But more importantly, it was my first big outing in a long ass time. And I did pretty good. I was definitely tuckered out last night, but not too bad.

Also of note, we had lunch at Chilis...Crunchy honey chipotle chicken. So good!

Another Viking loss today, back to work tomorrow and chemo on Tuesday,

Thursday, September 15, 2011

Treanda says " F u myeloma"

Saw Dr. Berenson today. He's basically my myeloma consultant. He said it looks like we're getting "traction" with the new chemo regimen. We're doing good and next week I start cycle two of this regimen, Good news! We're getting somewhere.  Thank you treanda.

I've felt really good this week. Worked a lot, had energy, etc, etc.  Next week that ends as cycle two starts. But that's ok, its working.

Kidneys still questionable...but lab work I had done today ought to give some answers. My arms is recovering from the AV shunt surgery. It's pretty freaky. You can feel the blood moving in my wrist and if you hold the wrist up to your ear, you can hear the blood pumping away. Really weird.

I've been missing the bike a lot lately. Might try and ride the stationary bike this weekend.

Other news...going to Reagan library on Saturday with Matt.
Sunday, Vikings bounce back and win.

Tuesday, September 13, 2011

Tuesday

It's another off week of chemo. Well, sort of. I do take a chemo drug orally at home during the non-infusion weeks. But that doesn't count. I'm feeling pretty good. Been at work two days in a row, tomorrow ought to be three. Gracie got a morning and afternoon walk today, that's a first in a while.

Thursday is Berenson...hopefully he'll echo Phan's sentiments that we're making progress.  Lab work on Friday and next week it's back to chemo and treanda and feeling like crap.

Saturday, September 10, 2011

Home

Got home last night about 9 pm. aaah.

Now have 3 connection spots on my body...port a cath, perm a cath, and av shunt. Frankenstein's monster.

Friday, September 9, 2011

Rapid Fire Summary and Update

Diagnosed with multiple myeloma May 2.
Started chemo May 3.
Three different chemo mixes didn't work.
Started new drug mix late August. Signs that it is working.
Drop in bad protein in urine.
Kidneys still bad but has been stabilization and a little improvement.

Still not on dialysis, although super duper close. I've opted to put it off for now and let chemo do its trick.
Nonetheless, getting AV shunt (merging of a vein and artery in arm)today. Shunt would be used if dialysis were needed and allows for eventual removal of tubes hanging out of my chest.

Currently in hospital cause of high fever the other day.
Should be going home today after AV procedure.

Other facts:
Still have my hair
Still working part time...in office and from home
Threw up for first time the other day
Also a first, talked to a cancer life coach yesterday....the mental part is as difficult as the physical.

Wednesday, September 7, 2011

Son of a bitch

So I am just cruising along, taking the new chemo regimen, feeling tired, naseous, etc, etc. I was going to go to work yesterday, but just couldn't muster the energy. But that's ok, part of the process. Then late in the day I threw up for the first time. Still part of the process. But soon after I had 103.3 fever pop up out of nowhere. What the fuck? So now I am back in the hospital, fevers that high are treated as if I have an infection. Fever is gone and actually feel prety darn good today. Fingers crossed for getting out by Friday. Football starts this weekend and John & Doreen are coming to town.

Thursday, September 1, 2011

Two in a row.....do we have a trend?

Me says yes. Two labs in a row with positive results. That's a first! Creatinin down to 7.28.  Alright, we are seeing some improvement. Got the results while I was getting a blood transfusion today. So seems like the treanda might be working.  It certainly is kicking my ass.  Fucking tired and often nauseous. But I'll take it.  Tonight I add revlamed to the mix.

Tuesday, August 30, 2011

1 for 4 (pending a more definitive trend)

Well, even Dr. Phan was happy today. My creatinin was down to 7.6 this week. It had been up to 8.5ish....on the edge of dialysis. As we all know by this point, the kidney function is a reflection of the power of the cancer.  The higher the creatinin in the kidney, the more powerful the cancer and less effective the treatment....and you know the rest of this story.  It's been gaining steadily for the past few weeks. Today, good news, it's down, likely meaning the reconfigured chemo (treanda with revlimed on the way) treatment could be working.  So I'm happy, Leslie and Dr Phan are happy. But we need to see a trend to definitively say it is working.  Later this week, more blood work. That will help answer the question. And next week, a bone marrow biopsy to give an even better picture of what's what.  But fucking finally, that's what I say.

My red blood celll count is hanging in there, but we're doing a transfusion this Thursday, just to get the blood count up a bit and get my energy up. The transfusions at this point are no big deal.  White blood cells also hanging in there, a good thing.  One other difference with the new chem drug is that I've been feeling real naseous the past few days. Haven't thrown up but been pretty close the last two days.  With all the previous drugs, I haven't had any stomach issues, other than a newly formed layer of fat. The doctors say the level of side effects experienced does not equate to the effectiveness of the drug, but I beg to differ. The fact that I've been feeling bad, to my mind, means the shit is working.

And here's another odd thing....You know how when you close your eyes and you try and focus on what's right in front on you (other than closed eye lids), and you can make out shapes and movements and shadows. Lately, when I close my eyes, it's been real dark and I see real scary, ominous shapes moving in front of me. Weird, right? Well, the past couple days I close my eyes and it's been brighter with less intimidating shapes and images. Trippy. What's it mean? Hell if I know. I'm not a spiritual or religious person, but I've been trying super hard to have positive thoughts, and perhaps that is working as well. The brighter images behind my closed eyes means something, I'll tell you that.

So chew on all this and I'll update more later this week

Saturday, August 27, 2011

0 for 3

Holy shit, what a busy week. Monday was kidney doctor. Tuesday chemo. Weds was second kidney doctor at Cedars. Thursday was Berenson & Phan. Friday was chemo and Phan.  The end result of all these appointments? My kidneys are worse than ever...I'm inches from dialysis. Everything still works, so I'm fighting the dialysis.  The problem is that the kidneys are a result of the myeloma. So what this means, is that my treatment isn't working. The myeloma is getting worse. I don't feel any worse or different, even worked this week.

But I'm 0 for 3 on treatment. We finished up cycle 1 of the latest regimen...thalidomide, which is supposed to be super powerful. I've handled it pretty well. It tires me out at night, but otherwise no side effects. No success though, so thalidomide is already out the window. Yesterday we started a new more powerful regimen which include Treanda (never heard of it) and Revlamid.  Wrapped up my treatment of Treanda at 3 yesterday and basically slept from the moment I got home until now. Phan says we are basically throwing everything possible at the myeloma. Lots of guess work at this point.  Something better work and soon. This is no joke!!  Also going to work on seeing another myeloma specialist to see if we're missing anything in terms of treatment or results.  Berenson is good, but don't want to miss out on anything.

Phan is going to do a bone marrow biopsy in 2 weeks, this will answer some questions as well. It's all scary and frustrating,  to say the least.

A few years ago, my nephew Dillon and I decided to climb Mt Whitney in one day. Early in the day, we were laughing at these other people with all their equipment, who were saying how hard climbing the mountain was. We figured it would be a piece of cake for us. By the time the sun was setting that day, we weren't off the mountain yet and realized that it is a difficult task, and that we are pretty stupid. At one point my leg was stuck in between a patch of snow and a rock, and I thought to myself that I'd be spending the night on the mountain. But we made it up and back in one day.....and as time has gone by we are still dumb enough to say we'd do it again.

I think I approached my myeloma treatment the same way. I figured early on, that I can do it, no problem. I had no reason to listen to folks who said how hard it would be. Well, I was wrong.  This shit is a lot of work and a real long process.  But we'll keep fighting.

Tuesday, August 23, 2011

I hate roller coasters

We go to Berenson and he says there are encouraging signs. Awesome! Then we see Phan and he paints a less rosy picture. Not so awesome. Kidney functions are worse than ever, but they are still working. Ummm...ok. A month ago, kidney doctor was all panicky over state of kidneys. Now she is all casual about it. Head scratcher. Going to see another kidney doctor tomorrow for another opinion. Need to get those tricky little bastards under control.

Still been getting low grade fevers but today was chemo and it's likely the steroids in the chemo are preventing a fever today. Plus my voice is gone, which seems to happen after chemo.

So tomorrow I'll work half day then go to new kidney dr.

So as you can see, this myeloma ride is a real roller coaster. And I don't like it. Then you throw in all of life's stresses which get magnified by illness, and my head is ready to explode. I think for both me and Leslie, we feel like we're 4 months in and no further along. What the hell?

My 50th is less than 2 months away and I can honestly say that I didn't envision dealing with cancer as how I would be celebrating. I was super excited to turn 50. Not so much now.

Sunday, August 21, 2011

Sunday humday

Friday and Saturday were good days. Saw friends, went out, and felt pretty darn good. Today? Super duper tired all day. So its been naps, tv, bills and that's about it. Still getting low grade fevers but catching the fever early with tylenol does the trick.

Busy week coming up. Monday is lab work and kidney doctor. Tuesday is chemo. Thursday is back to Berenson and Friday is chemo. Also going to try and make it to work.

Thursday, August 18, 2011

Finally

One of the toughest things about this myeloma situation is the mental part of it. I've been waiting a while for some positive news.  The worry and fear can really take a toll on a person.

On Tuesday, I saw Dr Phan. He said, yes fevers are cancer related and in all likelihood it meant that the cancer is getting worse. He thought that Berenson might want to change up my chemo mix to deal with this.

Well, today I saw Berenson and he said that the fevers aren't cancer related. Myeloma doesn't lead to fevers. And In fact, in looking at some of my numbers, he sees some encouraging signs and thinks the treatment is probably working...so no changes in the chemo mix. Next week we start cycle 2 of the new regimen.

So finally good news!!!  Now let's kick some ass.

Tuesday, August 16, 2011

This week

Obviously things can change. But here's the schedule for this week. Worked yesterday. Home today, appointment with Dr Phan in the morning. Work tomorrow and Thursday. Off on Friday. At some point we'll see Zoller, the kidney doctor. I thought Berenson was this week but it's next week. Still getting fevers, but learning how to control them.

Drug Supply

Remember last month when we were scrambling to get Doxil? It seemed odd that a vital drug would not be available. Turns out this is a growing problem. Who's to blame? Perhaps everyone. Interesting article...

Drug shortages set to reach record levels

Sunday, August 14, 2011

Home!

Says it all

damn

what a crap ass day yesterday. here's how it went.....going home, not going home, going home, not going home, and finally going home. Leslie came to get me about 7 pm. We were putting my stuff together and my temperature was taken one last time. 102.5. not going home.  it had been fine all day, but turns out there was an issue with a broken thermometer, that I kind of knew about, so my earlier readings might not have been accurate. the end result....still in hospital.

all tests for infection have been negative. good news. but it's likely the fevers I've been having are due to the cancer. bad news.

Saturday, August 13, 2011

hospital blur part 2

So I fell back asleep, only to be woken up by a tag team of doctors. Nothing to report. Blood cultures not back. Then a series of questions. Any pain? Swelling? Nausea? Headaches? Blah? Blah? Blah?  Nope. Nope. Nope. Nope. Nope. Then doctors ask if I have any questions. When can I go home? Oh well, that depends on your blood cultures, if your fever doesn't return, etc, etc.

Ten minutes later, another doctor. Exact same questions. Exact same answers.

Ten minutes later, I see a gurney in the hallway. Apparently I was scheduled for chest x rays this morning. Odd, given I had chest xrays thursday night and yesterday morning. The nurse checks and some other doctor ordered more xrays. I go. They take the exact same pictures that they took yesterday, even though yesterday's were clear. Now back in my room.

Hence, being in the hospital is a blur. Every day and every doctor starts to meld into one. Boredom, anxiety, and the desire to get the flock out of here grows as that melded blur grows.

hospital blur

It's Saturday..I guess...and I'm still in the hospital. This is what happens. One day becomes two days becomes three days and next thing you know, I've been here too long. It all becomes a blur. I eat, sleep, watch tv, talk to visitors, and wait for lab results.

No fever yesterday, I've gotten two transfusions already, lots of powerful antibiotics, fluids, blah, blah, blah.

My potassium is now fine. Kidneys still aren't good, but they haven't gotten worse.

uh oh, see that, as I am writing this, I got tired and need to take a nap. It's a boredom nap, but a nap nonetheless. It'll be Sunday or Monday or Tuesday soon enough.

Friday, August 12, 2011

Oops

I managed to make it to work 4 days this week. I fought off a fever the other night. But the fever came back yesterday, so now I'm back in the hospital. I didn't necessarily go kicking and screaming, but I wasn't happy about it. Probably the right thing to do, we really do need to avoid infections. I imagine I'll be here through the weekend. My blood count is super low, as low as its been this whole time. So I am getting blood as I write this.

My potassium is down which is a good thing and creatinin is about the same. Mixed bag on the kidneys.

Luckily I have angry birds and preseason football to keep me occupied.

Thursday, August 11, 2011

good patient becomes bad patient

We're in the 4th month of this shit. So far I've been a pretty good patient, doing what the doctor says, following orders and working to get better.  Sure I've had moments of being pissed off or depressed, but generally I think I've kept a fairly positive attitude. Until yesterday that is.  Every morning I take about 11 or 12 pills. Yesterday was no different, except it really pissed me off. 11 fucking pills, every fucking day. It's becoming a real bullshit deal.  I really need to see improvement.  Anyhow, that got my day started off on the wrong foot.  Then last night I had a fever, and Dr Phan has been very clear that if I have a fever I need to go to emergency, because I might have an infection.  Well going against his recommendation and Leslie's recommendation, I opted to not go to the hospital.  (Please note.....not looking for advise or any tsks tsks).  I knew the fever would break. And more importantly for me, I knew if I went to emergency I'd end up spending 4 days in the hospital and by day 2, I'd be thinking about how I can kill myself and if I'd have to gumption to actually do it. (again, no advise please.....just venting and letting the thoughts flow).  When I spent 8 days in the hospital a couple of weeks ago it was horrible and I'm not ready for that again. Foolish? Perhaps. But it was decision I made. Leslie called me out as a bad patient, and I can't disagree.

I've been at work every day this week, but I've also been pretty tired. I think the chemo is starting to wear me down a bit. It's hard waking up in the morning.  Tomorrow we have a kidney doctor appointment and hopefully there is improvment. There sure the fuck better be. And I really want these tubes out of my chest.....they're annoying, there is a risk of infection, I can't shower, and I can't roll over on my side. Please let me get the tubes out next week. That alone will help my mood.

We see Berenson next week and will have a good idea if this new regimen is working or not. Again...it sure the fuck better be working. I've been thinking about a rental house I have in Fallon, Nevada. The mortgage is like $850 a month and it's in the middle of nowhere.  Maybe I'll just move in to that house and live a quiet cancer filled life in the middle of Nevada. Woohoo, exciting!!!

What else? I think that's about it for the update.  I had blood work this week, I did a 24 hour urine test (self dignity is out the window), and I'm taking a laxative to flush potassium from my system and that's playing mad games on my belly...if you know what I mean.  But otherwise it's been quiet.

Saturday, August 6, 2011

Saturday

Kidneys still jacked up, but we're doing a whole lot of flushing. A LOT! Go back to Zoller, kidney doc, next friday. I am predicting kidney turn around. I got a glimpse of a dialysis room. Scary. I have to say the kidney issue makes me more nervous than the cancer.

Saw the new planet of the apes movie today with Matt Arms. A bit disappointing, the movie not Matt. But it was my first movie in a long time, so that was awesome. Had blood taken today. Leslie tweaked her back today.

And that's my report. Signing out.

In Williams' wondrous life, cancer a means to ... another beginning

Pat Williams, owner of the Orlando Magic, and his fight against myeloma.

Thursday, August 4, 2011

2 days in a row in the office

Baby steps.....Made it to work yesterday and today. Loved it.  I'm feeling pretty good. Had blood taken today and we'll see results tomorrow morning at kidney doctor. Think positive thoughts for the kidneys! I'm sending good vibrations to all my organs....that's what she said.

Next week is an off week for chemo, so hopefully I'll put in some more days in the office. I thought I'd forgotten what I was working on, but turns out it all came back to me.

Wednesday, August 3, 2011

Awake

Weird...woke up to the alarm today. Going to work. Yay!

Tuesday, August 2, 2011

Almost back to a routine

Tomorrow I go to the office for the first time in 3 weeks. Who knew I'd be excited about going to work. I've actually been getting a lot done from home and while I spent a week in the place that shall be nameless. But going to the office will feel like I am part of the real world.

Friday we have follow up kidney doctor appointment. I still need lots of kidney improvement, but seems like I have at least stabilized. I hope so, cause for some reason, issues with my kidneys scares me more than the cancer does.  I can eat just about anything now, which is good. No dairy though....so no ice cream.

My red blood cell count is up, which is odd. Seems like good sign to me, but both cancer doctors say it's nothing to get excited about.  My light chains ( a measure of the cancer) are down, also seemingly a good a sign, but Phan wants to see a trend....a consistent downward trend before we consider it significant.

I owe some people some phone calls. Sorry about that, I'll try to catch up with people this weekend.

And that's it. A couple of days coming up with no appointments. Just me and my annoying tubes. I'll take it.

Saturday, July 30, 2011

Errands never felt so good

Store, gas station, cleaners, roasted chicken, windows down in car on a saturday. So nice being out and about, a little slice of normalcy.

Spent the day yesterday getting pheresis and chemo....long ass day. But we're done with pheresis...now the new chemo regimen has to do its job. We see Dr B on Monday and continue chemo on tuesday, plus I have thalidomide that I take at home at night. That shit knocks me out....in a mellow sort of way, so it's alright.

Tuesday, July 26, 2011

Home.....Oops not home

Craziness. We thought I was going home today. And we thought I'd do more plasmapheresis (pp for now on; too long to type) as out patient. BUT, the hospital doesn't do pp as an outpatient thing. Instead I'd have to be readmitted into the hospital for a day. Stupid, right?  SO since tomorrow is my next pp, it didn't make sense to leave today and then come back tomorrow. SO, I can go home tomorrow. BUT, my next pp is scheduled for Friday. SO, do I check out tomorrow or stay till Friday to make things easier? That is the question. If I can find somewhere that does do it as out patient, then I can be out of here tomorrow. Otherwise I feel pretty good, I've been up walking around and actually doing a fair amount of work.

The kidneys improved initially and now they have stabilized. Still not good though. The goal though was to stabilize them until I started the new chemo regimen. I've started the new regimen, so let's see improvement.

Here's the chemo drugs I now take: velcade, thalidomide and cytoxan. Plus, there are a whole bunch of other meds. Thalidomide is some powerful stuff. It knocks me out. Too bad they wake me up 4 or 5 times a night. Annoying, which is why I want out. It's anything but relaxing here. Motel 6 is more comfortable than a hospital. At least I have my own room.

My diet has changed again, my kidney doctor wants me to eat everything, except dairy products. And she wants me to eat lots of salty food and protein. This is totally opposite of the kidney diet that Leslie has been working on for 3 months (3 months? holy shit, this has been going on a while). WTF? I don't understand the change, but I'll take it. I had salt and pepper chips today. So good!  My appetite is pretty darn good, I'm hungry most of the time. Now that I can eat just about whatever I want, I should be putting on some pounds. I might be one of the few chemo patients to get fat during treatment. Between my appetitee and steroids, don't be surprised if I become big, puffy, fat blob.

Got a plant and card from work folks today. That was awesome, really helped my mood. I've had a pretty bad attitude (baditude) for the past few days The hospital sucks, but having the crap attitude doesn't do anyone any good. So that card helped me turn it around. Thanks everyone.

And here's a little tip.....when I have a bad attitude or am seriously not happy, its unlikely that I'll update the blog. So if I go a few days without blogging, you can assume I am down. If I'm updating, then my attitude is good. So I'm good right now.

Another tip..... if I write about my anger or irritation, I'm actually doing ok. I use the ire as motivation.

And my final thought for today: I really need a passion or hobby. Something that I talk about and think about all the time. It needs to be one step away from an obsession. And it needs to be something that I talk about so much, that people walk away from me after a while cause they're sick of hearing about it. The question is: What is my passion? That's a tough one.

And my final final thought for today: I'm real excited for the new planet of the apes movie. I'd kind of like to do a planet of the apes marathon and then see the newest one. Might be a tough one to pull off (that's what she said). But when the new one is on dvd and I have fewer doctor appointments, I think I can do it.

Monday, July 25, 2011

I do know it's Monday

Well, still in the hospital. Boring and not at all relaxing. I had the last of the plsamapheresis today. I still have tubes sticking out of my chest. Assuming my blood work is ok in the morning, I should get out of here tomorrow.  So tonight I am lying in my hospital bed, trying to think positive thoughts about positive blood results. I'm also worried about leaving here with tubes sticking out of my chest. How do I clean them, avoid infection, and prevent Gracie from jumping on my chest in the middle of the night?  Scary!!

What else? I could go through a laundry list of little things that are bugging me physically, but I won't. I actually feel ok, not much different than I've felt for a while.

Saturday, July 23, 2011

Is it really Saturday?

Well, we saw Dr Berenson on Monday and felt encouraged by what he had to say. That encouraged feeling disappeared quickly Tuesday when Dr Phan told us that I needed to get in to a kidney doctor right away, that I was on the edge of kidney failure. We'd been trying to schedule an appointment with a new kidney doctor, given the first one has been totally disengaged.  I got a Tuesday appointment and was told to check in to the hospital, that I needed to get a process called plasmapheresis....which is being done to prevent permanent damage and help me avoid dialysis.

So now it's Saturday, I'm still in the hospital, I have new tubes sticking out of my chest and I've been hooked up to a machine 3 days in a row, with 2 more to go. The good news.....my kidneys are showing improvement and I'm feeling better. But Weds was bad, I felt bad, the doctors were scaring me and it didn't sound good. I'm feeling better about things again. I've also already started my new drug regimen. And the doctors seem calmer.

I'm here until at least Monday and then I really hope to get out.

Tuesday night (I think) I was wheeled downstairs in the middle of the night for an ultrasound. When it was over, the tech said someone would get me back to my room. I closed my eyes and actually fell asleep. I woke up 30 minutes later, still in this dark room in the basement. I'd say they forgot about me. I got of the gurney and walked in to the hall and found a cleaning woman who flagged down a nurse who flagged down my transport. They definitely forgot about me.

Tuesday, July 19, 2011

Dr B and the new approach

Well, we saw Berenson yesterday. And it definitely gave me some hope. He talked about getting me to the point where I live a complete life....not quality of life. He was surprised we waited this long to change things up, given it was clear that doxil/velcade isn't doing anything. So he's got me on a whole different regime....starting today basically. He says we ought to see some quick results.

My kidneys worried him....more on that in a second. He couldn't believe that fuckhead Warner went on vacation, without following up with us. We need to be seeing a kidney doc once or twice a week.  But, other than my anemia and bad kidneys, he said you couldn't guess that I have myeloma. However lab work shows it progressing.

He sees no need to do a kidney or bone marrow biopsy. We have enough information already and need to go after the myeloma. He doesn't see the benefit of the stem cell transplant....that all you are doing is treating a symptom and not really killing the myeloma. His goal is to kill the myeloma. Leslie and I left Dr B's office feeling pretty good about things.

Then last night Phan called, we got the results from the morning blood work. Fucking kidneys....even more jacked up. We need to act quick and need to avoid dialysis. That was kind of a bummer. I was going to go to work today, but the plan instead is to see a kidney doctor this morning. Warner is absolutely out of the picture, so it'll be a new doctor who hopefully actually cares about their patients. Warner had me do the 4 day in a row saline drip and ran some tests. And then he never he followed up with us.

And I think that is the gist of yesterday. There's hope and hopefully I'll see progress in the next week or two. I need some positive results.

Monday, July 18, 2011

24/7

It's Monday and we're seeing Berenson, the myeloma specialist, today.  I imagine we'll be changing up the chemo drug mix and discussing next steps.  I am going to push for lots of stuff and lots of stuff soon. Bone marrow biopsy, kidney biopsy, start the stem cell harvesting process. I'm 3 months into this shit hole and it feels like zero progress has been made. In fact, it feels like the opposite of progress has been made. What's the opposite of progress? Crap, that's what. I think about this thing 24/7 now. The mental exhaustion is almost worse than the physical fatigue.

I'm not writing this post because I want some words of wisdom from anyone or any positive "atta boys". I am writing this, because I'm tired of it already.  I have this October date in mind for going back to leading a somewhat normal life. I've always been active, healthy and independent. My life now is anything but those 3 things. When everyone talks about "quality of life", are we talking about how I am living right now? Cause this sucks.  If it's October and I'm not improving, it might be time for me to emulate Marley in Marley & Me and find a tree to sleep under for my final days. I thought that was going to be a happy dog movie, but it sure wasn't.

Last night in doing some research on Berenson, I read a linked story from 2 years ago about a local, young police office and his brave fight against myeloma and how great he was doing. Curiosity got me searching how he is doing now....two years later. Two months ago...his memorial service. Awesome.

If my treatment changes and I start feeling worse, I'd imagine there will be a point where I can't work any more. Sure maybe I can collect disability, but how's that compare to working? It doesn't .  And cause of my medicines and treatment, I won't be able to waste my monthly disability check on booze and junk food. What fun is that?

I want Leslie to lead a normal life. She's living this 24/7 and is amazing. But how fair is that...she needs to do other stuff once a while.  I'm feeling like a burden and pity case to everyone.  I don't like being a burden.

Jan and Michelle had a bbq at their house the other day. It was very nice of them. I got a lot of hugs and "how're you doing?", all with that pity look in their eyes.  When leaving, one person said to me "don't be a stranger."  Ummm...ok. I don't see you often even when healthy. Weird. Awkward.  And the awkwardness likely comes from me. One of my best friends, Matt Arms, has been absolutely awesome during this whole time. But I worry that at some point he and friends will fade away.....24/7 myeloma conversation and new medicine talk will only take a friendship so far.  Family.....family is tricky even in the best of times. We're all trying to figure out how to balance the family concern/worry with what my needs are.  And like I've said before I need to get better at communicating and putting my foot down. 

So you see, October is huge. I turn 50 and that's my target for leading a somewhat normal life. And that's why today and this week are huge in my mind and I am a nervous wreck.

Saturday, July 16, 2011

Anxiety and Impatience on the Upswing

Thursday I had a transfusion, my 5th one since early May. I didn't get the immediate energy boost that I usually do. Although my labs showed my blood count went up.

The lab work also shows my kidneys worsening. What the fuck? Dr Phan has some ideas what to do, with the goal being to avoid dialysis. Amen to that goal. But Phan isn't a kidney doctor. My kidney doctor never called us this whole week and it turns out he is on vacation. Fuck you. Leslie made some calls and hopefully by Monday, we'll have an appointment with a new kidney doc.

Monday also is a consultation with a myeloma specialist, James Berenson.  He has already consulted with Phan and has some ideas about super sizing my chemo mix. Let's do it. I'm still tired all the time, but otherwise feel the same. Well, physically I feel the same. Mentally I am more paranoid, more worried, and more impatient. I'm real fun to be around.

Thursday, July 14, 2011

Transfusion # 5

Yesterday was my 5th transfusion since this whole myeloma crap started. Damn, that's a lot of blood. But it was my first one in almost a month, so my body is hanging on to blood longer. That's got to be a good sign, right?

Today I am in the office for the first time in a week. A little weird being here. After work, I go get blood work done, and then it's home for a nap and hang out with Dillon and Jacquie.

Tomorrow is chemo, the end of cycle 4. I was supposed to do about 8 cycles, so in theory I'm half way done. But given we're changing things up, I don't know how many more cycles I have.  Plus I am waiting for consultation appointments with a couple of local myeloma experts. Hopefully, that'll happen next week. Times a wasting!

Wednesday, July 13, 2011

Reason # 38 for the downfall of the traditional daily newspaper

# 38 The local delivery lady

Up until about 3 years ago, I was a lifetime subscriber to the LA Times.  Just like with books or magazines, it's nice to have that tangible paper in your hand. Eventually though the paper became an outdated way to get the news and the writing just isn't what it used to be.

But the biggest problem is my local delivery lady. Every damn morning, while walking Gracie, I see her hauling ass through the neighborhood. She doesn't stop at stop signs, goes about 45 on residential streets and totally ignores the fact that there other cars on the road. More than a couple of times, Gracie and I had to stop ourselves from crossing the street to avoid getting mowed down by her. She has also grazed our feet a couple of times with her paper toss. She refuses to look at me...which makes no sense, given I've taken to flipping her off and yelling at her. I've become that neighborhood grouch who yells at people that aren't obeying the rules.  But I don't care, she really is a hazard. And she's not a good representative for whatever paper she is delivering. Argh...maddening.

Otherwise, I feel pretty good today. I slept good, again no night sweats following chemo. So seems like something is happening. I just need that lab work to reflect how I feel. Transfusion today. Energy!

Tuesday, July 12, 2011

Progress? No, maybe, yes, a mixed bag

Kidneys stayed about exactly the same. Not bad, but not good. But Dr Phan said we might not see immediate improvement from the 4 days of saline drip and 2nd dose of doxil. So we'll do more lab work later this week and see if there are any changes.  We didn't have the results of the "light chains" which is a real marker for the cancer. This is where we really want to see improvement, given the cancer is impacting the kidneys.

I haven't had night sweats in a few days, even after chemo and steroids. This is a real change and possibly a good sign, given they've been a symptom I have had since the get go.  Sooner rather than later, we'll do a bone marrow biopsy and this will give a real clear picture of what is going on.  My bones and calcium count are still ok.

I'm low on blood, so tomorrow is a surprise transfusion day.  It's been a while since I've had one, so I am about due. We'll do it as out patient.  I had planned to go to work tomorrow, but blood trumps work. I am still trying to keep up with work, but it's tough to do with the ever changing medical program.  This sucks, I really just want to go to work and be a normal working stiff.

Dr Phan is referring me to 2 different local myeloma experts.  At this point, he said we need to get creative, aggressive and talk to some other myeloma specialists. It doesn't necessarily mean I have to travel to Arkansas just yet.  It's more the doctor than the location. So he is sending me to two of who he thinks are the best....James Berinson, who is somewhere in LA and Dr Durie, who is at Cedars. 

Friday we finish cycle 4, and then in all likelihood we'll switch to revlimid.  For revlimid, I had to sign some forms that I didn't have to do with the other drugs. The forms had to do with me acknowledging that revlimid can cause birth defects in babies. So I had to sign, agreeing that Leslie and I won't be having any babies while I am on this drug.  Not a problem, but kind of a trippy thing to have to sign.

Leslie is still kicking ass and really doing more than I ever could of asked anyone to do. My mom was here, as was my brother and his youngest. It's really tough for me to simply say I'm tired, go away and conversely really tough for me to ask for help on simple things.  Either way I feel guilty and like I am a burden to everyone. And then you throw in the damn Jewish guilt......like me thinking "damn I should be have been nicer to my visitor" or "damn, I'm a horrible communicator". Communication takes energy, I really should have worked on this when I was younger and healthier. It would make things easier now.  Got a real nice card from my sister and her family.  As always, I really appreciate every one's concerns, thoughts and prayers. That is also real important.

And I think that's about it for the update. It's all overwhelming, but we all agree that we need to get more aggressive. Generally I feel the same as I have felt for months. Fatigued a lot. But otherwise I'm strong and now is a good time to fight.

Monday, July 11, 2011

Monday, Another Week....Time to dig in

Today we have a dietitian appointment in the morning. We need to figure out this kidney diet. Leslie read me some stuff over the weekend, and it's just ridicules. We need to feed the body with good stuff to help fight the cancer. But then I have to watch what I eat because of the kidneys. But then the kidneys are jacked up primarily because of the cancer. It's a vicious, annoying circle.

And I am starting to think that we need to go all in with regard to fighting the cancer. Not sure I can wait for the kidneys to be ok for the City of Hope to do the stem cell process. We're getting lab work today and will have results tomorrow. Based on those results, I want to have a conversation with Dr Phan about looking at Cedars, UCLA, USC or even University of Arkansas, which has a leading myeloma research & treatment facility.  What's interesting, is that most folks talk about myeloma in terms of managing it, extending life and maintaining quality of life.  Arkansas talks about an actual cure and how that might be achievable. It's a slight difference in wording.....manageable vs cure.  But it's a huge difference. I want a cure. I want to bike to work, I want to climb mountains, I want to lead an active life. Sure maintaining quality of life sounds pretty good right about now. But it doesn't sound like it means leading life as I used to.  Perhaps I am reading between the lines or am getting into semantics.

Either way, I need this week to make some decisions and map out a path to normalcy. Fuck myeloma and fuck waiting.

Sunday, July 10, 2011

Relaxation

Nap time for me and Gracie after calming aromatherapy from Leslie.

Day 4 of saline drip

Getting ready to go get saline drip. It takes about 2 hours. This is the 4th day in a row. Tomorrow, I do lab work and we'll see if it helped with the kidneys. I've handled the latest doxil treatment ok. So Tuesday, based on my lab work and kidney status, we may or may not change my chemo drugs.  If we change, we'll go to revlimid, I think in combination with dexamethasone. But we'll see. To say I am anxious, would be an understatement.

Friday, July 8, 2011

This shit is getting old.....real fast

Saw the kidney doctor yesterday. He and my oncologist had talked and they agree that my kidneys are worsening because of the cancer..and not necessarily because of my diet. I still need to watch my diet and I still need to keep to protein intake low.  But the real key is to get the cancer under control. Today is doxil and hopefully that will help.

But we also need to get the kidneys better asap, while we are treating the cancer. In the past couple of weeks, they've moved close to the critical stage. And what we want avoid is dialysis. So yesterday, today, and over the weekend, I'm going to be getting a saline infusion that should help flush and clean the kidneys. I just sit there for an hour and get a bag of the saline solution, I suppose I can handle that. And I need to drink even more water.

But overall, I gotta say I am getting real sick of this shit. Poked, prodded, tired, stressed...every darn day.  I know this is going to be a long process, but wow, it just really takes over your life.  I'll do what I need to do, but that doesn't mean I am going to like it.

Thursday, July 7, 2011

Bye Bye Protein...See You in a Couple of Months

When we first started treatment and first started dealing with my kidneys, I was on a super low protein diet. And I had kidney improvement. Over the past couple of months, my kidneys have gotten worse and I've eaten more protein...too much protein. This past weekend, I had steak, a hamburger, chicken, fish, a couple of turkey sandwiches and maybe something else. Between last Friday and this most recent Tuesday, my kidneys have had a further decline. I'm no doctor, but I'm placing some of the blame on my protein intake. I got lazy with my eating. Can't do that anymore. I gotta stay focused on doing everything right.

Today we have an appointment with kidney doctor. Dr Phan talked to the kidney doc and he knows what is going on. The cancer also produces a bad protein that is impacting my kidneys and my meds have some impact as well. So hopefully the kidney doctor will have some recommendations for getting the damn things under control. I'll probably see another kidney doctor next week to get a second opinion. Also have an appointment with a dietitian next week. The kidney diet and a cancer diet are unfortunately two different things, so finding a balance is key.

Tuesday, July 5, 2011

Back to Reality, and Then Some

Lab work not so great today. Kidneys are worse. WTF?  So now we need to go see kidney doctor this week to get those damn things under control. We're not totally thrilled with the current kidney doctor, so we'll see our doctor this week, but then perhaps make a switch.  My blood count is hanging in there, maybe I'll need another transfusion in a week or so.

Chemo was fine, but if the kidneys don't improve, we might try a different mix of chemo drugs. Got more lab work today, doxil Friday. Argh, so frustrating.

I did talk to an old friend of me and Uncle Jan today.  She was diagnosed with multiple myeloma about 4 years ago.  She was breaking bones at the time, which is how they diagnosed MM. She's doing well now, still has a home chemo routine, but is nearly in remission. She described myeloma is being a diseases that isn't curable, but is certainly manageable over time.  Her message was positive and encouraging. Certainly there is the potential for lots of other side effects.

Back to Reality

Had a good weekend. Hung out. Saw friends, saw family, ate some bbq, relaxed. I got addicted to the Ken Burns documentary on the Civil War, so I watched several episodes. I wish the doctor had wifi so I could watch during treatment today.

Most importantly, I kind of shut everything off this weekend. Physically, I felt fine...hadn't had chemo in several days, so I wasn't bothered by that. I got tired here and there, but it was nice to have a mental break over the past 3 days.

But today it's back to reality.  Chemo today...just velcade. Chemo Friday....includes the elusive doxil. Doctor was able to track some down. Most recent lab results today. And back to work. Well, I'm not going to the office today, but I do have work to do.

My mom gets here today and is signing a lease on her apartment. My brother and niece arrive tomorrow. It's July.

Sunday, July 3, 2011

Electric Planking

Planking

Amber came over yesterday and helped us with a bunch of yard work. Very cool of her.  And she taught us about the growing trend of planking. Leslie had mentioned it to me a couple of weeks ago, but we had kind of forget about it.  It's so random and so funny.



Friday, July 1, 2011

4th of July Weekend/Update

Also: Happy Birthday John, Happy Birthday Uncle Jan and Happy Anniversary Jan and Michelle. 4th of July is one of the better holidays.  I recently watched the documentary Beer Wars, and because of it I should hate the big brewers...trying to crush the little guy. But then I watch the Budweiser commercials with the special edition 4th of July cans and I get fired up. Hell yes Bud!  But no beer for me this holiday weekend.

In terms of my myeloma fight.  I took this week off from updating the blog and from talking about it.  Not much has changed this week. I had chemo on Monday and had the rest of the week off. I start cycle 4 on July 5.  Dr Phan finally found Doxil, there really is a national shortage.  One pharmaceutical company could have rush delivered it, but insurance wouldn't have covered that and it would have been $1,000 out of my pocket.  Instead, for the Doxil treatment on July 8, I'll go to a different location for chemo. Still close to home though.

Put in a fair amount of work hours this week.  But I've been particularly tired all week as well. Lots of naps after work.  Yesterday morning getting ready for work, it took me so damn long to find socks that matched, I got all pissed off. I seem to be moving in slow motion and can't do things very quickly, like find socks.  If I had to guess, I might need another transfusion soon.  But I am getting my normal Friday blood work today and that'll answer the question about my blood count.

This whole time, I've had a great appetite, which is good.  But my appetite is starting to go away, and things that sounded good a couple of weeks ago, now don't sound good at all. Haven't gotten sick yet though and still have my hair. I've lost about 10 or 15 pounds since early May.

What else? I think that is it. Giving Gracie a bath this weekend cause she stinks.

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.