UW Clinical Trial - Visit 7

Apologies for not posting sooner.  It's hard for me to post when I'm traveling . . .

I received my Herminator-2 cells on Thursday - all 16 billion of them!  They weren't sure if that was the most that anyone received in this trial - or the second most. At any rate, it was a lot!  : ) 

They said I might feel flu-like symptoms, namely chills and a fever.  It didn't really hit me until later (I got my t-cells from about 2:30-3:00pm) - not really chills.  I just felt chilly and then I felt my forehead about 9pm and decided it was warmer than usual.  So, I took Tylenol.  I took some again the next morning and then mid-day, but didn't really have a fever after that.  I have only been taking Tylenol since then mostly for the pain in my lymph nodes.

My lymph nodes became a bit more swollen and that whole area is red - with even a bit of bluish-purplish areas.  That's a good thing.  It means the Herminator-2 cells are at work in those lymph nodes releasing cytokines and hopefully killing those cancer cells.  I'll keep y'all posted about the status of these lymph nodes.  My hope is that they start shrinking; they said that it might take a couple of weeks.

I asked Dr. S how they would know whether the t-cells (Herminator-2 cells) they harvested from me where the ones that my body started creating after I received the anti-Her-2 vaccinations.  Dr. S replied that they don't know for sure.  However, they do measure something (wavelengths?  frequency?  something?) in my blood before I get the vaccines and they measure it afterwards several times.  I guess this wavelength?/frequency? changes when there's these t-cells.  But I won't know about these for awhile. 

So, fairly minor side effects. I have been having trouble with the bottom of my feet these past few weeks - my heels feel bruised and that tenderness extends up into the arches of my feet.  I think that it might be plantar fascitis. I talked to my physical therapist about it and she said to do runner's stretches for the achilles.  So, I've been doing that and massaging the tenderness.  They did say I might have muscle aches.  Is it due to my shoes?  I wore Keens all winter.  Starting wearing Chacos more regularly a few weeks ago. Could it be the Chacos?  Hell if I know.  I just know I'm tired of the achiness. 

I played softball today, though.  My left big toe wasn't as sore in my shoe as last week.  And, I could throw without tweaking my shoulder.  I batted 3 for 4 today and my team won 19-6!

Countdown to Hermination - 1 day

I'm sitting in my hotel room in Seattle - watching the news that Ken Griffey Jr is retiring (we were just at the Mariners game last night - they won 7-1).

I had my CT scan yesterday, but I wasn't able to get the results yet.  We had P.F. Chang's for dinner (yummy) last night and then went to the game.  Both Kevin (my brother) and I were really tired, but happy the Mariners did so well.  We walked to the hotel room from Safeco Field - about 45 minutes.

I'm feeling a little bit woozy and tired but it could be worse.  I think the anti-nausea meds are working.  I have a bit of a headache, which is a side effect of one of the meds I'm taking (I think Zofran, the anti-nausea one).  I am also taking a drug called Mesna, which is supposed to help protect my kidneys and bladder from the chemo drug I had today.  I also have Compazine in case I feel really nauseous, but so far, so good.  I do feel a little bit "urpy", meaning that I have a bit of a gassy stomach.  But again, it could be worse, so I'm happy.

Hermination is tomorrow - my appointment is at 1pm.  They say I may feel like I have the flu - feverish and with chills.  But if it does what it's supposed to do, yay!

Okay, our neighbors just showed up and they are noisy as hell.  I'm gonna call the front desk.  Sheesh.

Countdown to Hermination - 3 days

We head to Seattle tomorrow morning, early.  I'll pick my brother up at his house around 7am so I can get to my appointment at noon - and my CT scan is scheduled for 2pm.  Then, Kevin and I will go to the Mariners game at 7pm.  We got some seats behind the Mariners' dugout.   

On Wednesday, I have a Cytoxan treatment.

Thursday is Hermination Day.  Hasta la vista, baby!

Hopefully, on Wednesday, I'll feel well enough to do something.  Not sure what.

We come home on Friday - I hope to be here in time to pick Spagedward up from school.  Eddie's school carnival is that night and I hope to make it to that as well.

I'll miss Spagedward.  But I have great hopes for this treatment . . . especially for Eddie's sake.

Countdown to Hermination - 6 days

I head to Seattle in a few days - yay! - and I think my brother, Kevin, is driving me up there.  I'll be up there for three nights - and unfortunately, the American Cancer Society was not able to secure a hotel room for me, so I will have to pay out of pocket.  Good thing that I received donations from a couple of friends, the Chaplain's Office, and the local Cancer Center (about $1350), and a gas card from the American Cancer Society.  I think that I've spent about $550 so far for four trips and used all the money from the gas card.  It would have been twice as much if I paid for the hotel room myself - the going rate at the hotel I was able to stay in was over $150/night and I received four nights from the American Cancer Society.   I wanted to thank everyone who gave me donations - it's been very very helpful! It means that my own money could be used for every day things and even day trips to the coast, like we did on Sunday.

In other news, I did finish my mosaic and I finished repainting my bedroom in the colors that I prefer since I'm single now!  I liked the seascape I created - I will try to post pictures when I get a chance.  The blue sky was in a color called "Still Moment" (appropriate, since I'm trying to learn how to meditate) and my blue sea is in a color called "Healthy Waters" (also appropriate for obvious reasons).  When I looked for something to paint the sand at the store, after trying out various ones, I picked a color that I thought was more tan (so I guess it wasn't really "sand" but more tannish hills in my seascape; when I think about my image, it comes closest to a place in Spain called La Herradura that Eddie and I visited five years ago).  But when I brought it home and used it, it was more yellow.  So, I ended up mixing the yellow with a "coffee bean" acrylic paint to make a tan and then added water to make a "wash" and then used that to paint my hills a tan color.  When experimenting with paint strokes, I ended up with some splotchy clumps that I needed to fix. I ended up making them into clumps of grass.

All in all, I'm happy with it! I used a paint called "Fresh Aire" that has "No VOCs in the paint, no VOCs in the colorant and no chemical odor".  However, after painting with it for several hours on Sunday, Monday, and Tuesday, and sleeping in my room, I ended up feeling really fatigued for a couple of days and yesterday, I was headachey.  Part of my fatigue was staying up too late.  But I think part of it was the effects of the paint fumes.  So, today, a student (who just finished remodeling his house) let me borrow his respirator mask.  I think it worked great!  I don't feel nearly as yucky after finishing my room today.

So, six more days until I get my t-cells back.  I am very curious to see what happens!

Countdown to Hermination - 12 days

I head back to Seattle on June 1. My brother, Kevin, is going to drive me this time.  I think we're planning to go to a Mariners game on the 1st.  I may not feel up to it on the 2nd or the 3rd.  I still haven't heard from the American Cancer Society about lodging - will give them a call today or Monday about that.  My schedule for the visit is as follows:

June 1 - history/physical plus CT scan
June 2 - Cytoxan treatment (a conventional chemo - they say that they won't be giving me as big a dose as they would if I were undergoing treatment)
June 3 - Hermination (i.e., t-cell infusion)

Not much else going on - just work related things, like grant proposals, working on course assessments, etc.  It feels good, though, one grant proposal is almost ready to be submitted through our Research Office and then it can go on to NSF. 

Today, I want to finish grouting my mosaic so that I can seal it tomorrow.  I also want to start repainting my bedroom - I'd painted it this kind of warm maroon color with gold sponging, but that was because my partner, at the time, liked that color scheme.  I like cooler colors, so I think I'm going to repaint it in a series of blues . . . and might even paint a kind of seascape in there . . . I also want to declutter my areas.  I may go into my office and declutter my desks and email.  My problem is that I have so many projects going - both at home and at work - and many of the projects are waiting on stuff from other people so I can't finish them and put them away.  So, I keep them out until such time as I get back what I need from the other folks.  But that can take months and months and months . .. and months.  : ) 

So, who knows what I'll do.  But that's the plan and I'm sticking to it.  hee hee hee

Countdown to Hermination - 15 days

This morning, I got to thinking about "hermination", the word I used for "terminating" the cancer cells, using my super duper Herminator-2 cells.

It occurred to me that while hermination rhymes with termination, it also rhymes with "germination" and again, it seems a perfect term for me to use.

Hermination represents the TERMINATION of the cancer and the GERMINATION of a life in which my immune system is able to kill the cancer cells.

How cool is that?  : )

Also, I got most of the pieces for a grant proposal uploaded today.  We've been working on pieces of this for months, so we're glad that there's some forward movement. A good day!

Herceptin . . . and Week-end News

On Thursday evening, I went to the cabin at Shotpouch Creek for an interesting discussion with an author named Jack Nisbet, who's written several books about various explorers here in the Northwest. The most recent book was The Collector and that was what we talked about over a dinner and a glass of wine. It was an interesting conversation - and I was able to talk some about the colonial predilection to collecting artifacts and how some indigenous peoples have had to fight to get their artifacts returned to them. Anyway, it was an interesting conversation and I met more interesting people.

Then, I had another Herceptin treatment on Friday. I was able to go to work afterwards - feeling somewhat tired, but not dog-tired-fatigue. I went to our department faculty meeting - we were discussing our policies with regard to our Ph.D. program. My legs felt slightly shaky (not a lot) afterwards, but not as bad as before. I think this means that my body is getting used to Herceptin - and I think Joanna from Colorado might say that I don't have as many cancer cells floating around. I hope she's right!

I went to the Drag Show with dad on Friday night. When I went a couple of years ago, they had some of the professional drag queens from Portland and Eugene perform first. They weren't able to perform this year, so it was just students. However, some of the students were great! I was pretty tired, though, and my butt and hips were sore from sitting in those uncomfortable chairs. Also, my lower back was achey, which was a result of my kidneys trying to process the Herceptin.

On Saturday, after getting to sleep in some, I ended up putzing around the house and running errands around town. I also worked on my mosaic - grouting around the tiles. I am using a grout that I can color different colors. I worked on it a couple of hours on Saturday, then we went to the OSU Pow Wow. We had a free meal there - salmon, wild rice, salad, yams, and huckleberry cobbler. Yum! After a few hours, I took mom, dad, and Eddie home and then went back to the Pow Wow to keep my colleagues and friends company. Not many people showed up . . .

Then, on Sunday, after sleeping in again, dad and I went to Home Depot to exchange some items for the side storage shed we're building. Then I worked on the mosaic, ran errands, took a walk with Eddie, and then, since it was so nice, Eddie played on his slip /n slide. My softball team had its first game of the season - I didn't play very well at all and my right shoulder is very tight still so throwing was difficult. It was fun though - a couple who played with us beginning 19 years ago and who have played in maybe 6 or 7 years decided to get back on the team. That was fun! We won 15-14 with no help from me. Then off to a local pizza place and a beer.

So, it was a great week-end. Luckily, I had energy and had fun with friends and colleagues. I'm glad that Herceptin isn't giving me the really bad fatigue anymore. It's nice to function somewhat normally!

I had a physical therapy appointment this morning - good thing as my right shoulder was feeling tight from softball. My therapist is loosening some adhesions and I think it really helps.

Anyway, life is good. Just waiting to get my Herminator-2 cells back. The countdown to "hermination" of the cancer cells is 17 days.