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.