Treatment Update: Day 7

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Hello Team,
Since there is notice of a lull in updates, I thought I would take a second to let you all know that Tyler is now temporarily at home. He will receive all his treatments for December in the outpatient Moores Cancer Center, starting today. I think I can speak for Tyler, Marlene, and myself, when I say fatigue had definitely set in. The hospital life does not allow for much sleep. That is the plus in being released to go home for now, a chance at rest. The negative is that Tyler’s cell counts are expected to drop significantly in the next few days. He will have to take his temperature frequently and go back to the hospital if it rises. The chemo is also compounding Tyler’s fatigue. I imagine even if he is able to sleep, he is not getting relief right now as those cancer (and good) cells are dying out and draining him. His immune system is now at the bottom, so germs are to be avoided at all costs for the next week or so.

Treatment Update: Day 5

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“Keep your face always upward toward the sunshine – and shadows will fall behind you.”

-Walt Whitman

I could get really philosophical right now. My family says I have a knack for the wishy-washy (they use a more vibrant term), but what I have witnessed this past week is such a flood of love and support from friends and family, that I cannot help but feel slapped in the face on how I was handling our gift of life. Two weeks ago I had a definite list of priorities. Figure out my job situation, train to be faster (or fast as, let’s be realistic here) Tyler on bike,  train my dog to stop barking at select people he doesn’t like, train my dog to not bark at animals on tv, train my dog to not cry when his armpits are touched, and follow Ms. Leigh’s assigned diet to keep me healthy. Easy enough, but enough to keep me busy.

Then we got slapped. All of us. Every single one of you. I know you feel it. What the heck is going on here? Why Tyler? Why the most healthy, strong, beautiful, kind, loving, hard-working, passionate person we know? God knows. A few weeks ago my coworker was diagnosed with cancer, and asked me, ‘What did I do, why am I being punished?’. This is not a punishment, I told her, you can’t see it now, you might not see it for a very long time, but this is a lesson. Her eyes got big and I saw the wheels turning, ‘Maybe this will bring my family closer?’.

Maybe. I said.

So here we are, and my heart is open, and your hearts are open, and I have played team sports my whole life, but I have never felt a camaraderie like this. My priorities have changed, and at the top of my list: FAMILY, FRIENDS. Make my relationships count. This is all we have. This is what we are here for.

Tyler with my soccer star cousin Hamid

So Team Tyler, without further delay, I have the current update for our Hero.

He is kicking cancer in the heart, literally. So far the most uncomfortable side effects are coming from the steroids. Hiccups, irritability, difficulty sleeping, an overall ‘weird’ feeling. Sound harmless but they are magnified in this 10 x 10 room. Cell counts are currently still normal, but are expected to drop significantly in the next few days. That is when we should expect weakness and an increased risk for infection. His spirit is strong and his eyes are bright. So far, so great.

Bracelets are not in yet, I will post as soon as they are delivered.  And, special thanks to my lovely cousin Kathryn Kopczynski for sharing the quote at the top–Tyler loves Whitman  🙂

Team CHIP for Team Tyler!

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I had a nice visit with some of my friends and co-workers from CHIP today (www.sdchip.org). They wanted me to know that they love me me and are fighting alongside me. I missed the company holiday party last night, but they were kind enough to drink a toast in my honor, make the killer get-well banner, and completely spoiled me with an amazon Kindle for christmas. THANKS TEAM CHIP!

Knowing What you Need

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If you don’t know me well, allow me to introduce you to Tyler’s sister. If you should know one thing about me that shoots straight to the core it’s that I’m an over-analyzer (if that’s a noun). I could over-analyze Mary having a little lamb: why is her fleece so white? Do you think the lamb followed Mary all over the place because she was insecure about something? Should I ask Mary how she feels about all this…? Ugh.

One thing I’ve learned this week is the importance of knowing what you need; something Tyler knows without even trying. Monday, on my long trip home (an unexpected 7 hour delay in Salt Lake City… I know that wasn’t time-wasted, as I directed some Mormon prayers out to San Diego 😉 kidding… I was wondering what I might say to Tyler right before chemo: Should I make a joke? Should I tell him about the overly-eager-to-engage-in-conversation, overwhelming salesman I sat next to on the plane? I know, I’ll tell him about all of the older, frailer people I work with who go through chemotherapy and who are now living vibrant lives! Continue reading →

Treatment Update: Day 3

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Greetings from Room 360 West, Thornton Hospital, UCSD Medical Center, La Jolla, California, USA.  I’m happy to report that, all in all, today has been a good day.

HankShay

I got a nice visit from my friends Hank and Shay tonight. As my cell count begins to drop in the coming days, it will be increasingly important to minimize contact and exposure to germs--which is really going to be tough! Don't worry though, they washed their hands before they came in, and for now my cell count is normal.

Chemotherapy continues with little in the way of major side-effects, for which I am truly grateful.  It is still very early in the process, and while further adverse effects are to be expected, the only hiccup so far has been just that–a wicked case of hiccups.  Apparently this is a common reaction to Decadron, which is a steroid I’m being given in combination with Cytoxan, which they’re cycling through me via IV every 12 hours.  My next scheduled dosage will start at 10pm Pacific, and typically takes about 3-3.5 hours to complete.  Tomorrow will be my last day of the Cytoxan, and then they will transition me to one day of Doxorubicin and Vincristine along with one more dose of the the hiccup-inducing Decadron.  I’m drinking lots of water, and I’ve got saline and potassium on a constant drip which helps to ensure all these toxins don’t hang around in my body any longer than we need them to.

Smart Port

They implanted this alien-looking device in my chest on Monday.

Monday morning they implanted a device called a Smart Port in my chest.  It’s a little circular metal disk which feeds my medication and fluids directly into my blood stream and removes the need for a pick line or traditional IV.  They just stick the needle through a thin piece of skin, into the port, and start the drip.  When I leave, they’ll just pull the needle, and the port will remain in my chest until I’m ready to come back for my next treatment.  It’s much easier to keep clean and minimize risk of infection. I’m learning so much about hospitals, drugs, oncology, technology…it’s all pretty amazing.

I had a nice visit from my friends Shay Davis and Hank Connell this evening, so that was good for my spirits.  Shay is an amazing artist, and he’s got a lot of great glycee prints ready to ship for the holiday season.  Check them out at www.shayvision.com.  Oh, and Hank’s not a bad guy either!

Well, Nurse Kim is here with more hiccup pills and some Zofran (anti-nausea), so I’ll sign off for now.  Lots of love and gratitude coming from me and my family to all of you.  I can’t tell you how humbling your support and encouragement has been.  One day at a time until I’m healthy!

Love,
–T

Treatment Update: Day 2

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The Champion with Dr. Michel (oncology/hematology)

Day 1 is done. Yay! Lot of love and concern for how Tyler is doing after his first round. I can happily report that he took it like a champ. As this is now going to be the start of chemo build-up in his system, we will still have to wait for possible side effects to show face. Tyler is still under a quarantine of sorts, so visitation is to be determined.

For those that are interested, we were informed today that the cancer has been detected in bone marrow but not in his spinal fluid. As mentioned in the treatment plan, I think the doctors were expecting this, as this type of lymphoma is common in bone marrow.

“This does not change treatment plan or prognosis” – Dr. Curtin

Keep the support coming. On to Day 2!

Team Tyler – get ready to unite!

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I received this message today from my family in Milwaukee, I am super pumped on this idea and I hope you all are too:

Hi Tash,

Kathryn came up with a really great idea for Team Tyler. There are 600 lime green “TEAM TYLER” rubber wrist bands coming your way — in about 7 days. You can hand these out to  your family and friends to symbolize that we are all a united front under “TEAM TYLER”.  Lance Armstrong started this bracelet movement to increase awareness of the disease and solicit support. Lance beat it and so will Tyler. Please mail us a dozen so that we can also wear the bracelet and be on the team!

We’re thinking of you all!
Love,
Aunt Debby, Kathryn, Uncle Jim and Anthony

Stay tuned Team Tyler – bracelets are on the way! A BIG HUGE THANK YOU to Aunt Debby, Kathryn, Uncle Jimbo and Anthony. Great idea guys, we love you!