Final stretch

Suzanne is nearing completion of her sixth and final round of chemo in Seattle. She'll be flying back here late Monday (July 15), arriving in Fairbanks at 12:20 a.m. Tuesday. Her sister Elizabeth will accompany her on the flight from Seattle. Elizabeth will stay 10 days again to help get Suzanne through the post-chemo ickiness and appointments.
Suzanne's vital signs are all doing well, but she is sleeping most of the time at the moment. I talked with her briefly this afternoon.
Pat, Lin, Suzanne's mom Carol and Suzanne's longtime friend Robert Ames, from Walla Walla, all visited with her in Seattle this round. Elizabeth was to have arrived on a flight from London an hour or two ago.

--Sam

Changing of the guard

We packed sister Lynnea off to the airport Saturday for her return to Denver. On Sunday afternoon, Suzanne's mom, Carol, arrived. She'll be here for a few days, perhaps through Thursday. So we're getting lots of helpful help.
Suzanne had a very low white blood cell count Friday, but it's back up today. She actually had some energy on Sunday. Today's results showed her red blood cell count has dropped, and her energy level dropped with it. It's a bit of a roller coaster. Speaking of which, she also continues to have some nausea when she cuts back on the anti-nausea medicine, especially when driving on the permafrost-sculpted surface of Sheep Creek Road.
Thanks to everyone who has been supplementing our evening meals. We've got a bit of a surplus at the moment, so don't worry if you need to skip a week for which you've signed up. We won't starve. Far from it.
Louise got a job at the Division of Forestry warehouse packing firefighting equipment. Yesterday, she came home after an 11-hour shift covered in soot from cleaning and rolling used fire hoses. Working fires is always a gamble, but the weather is going to be hot for another week at least, so it's lucrative business for the time being.
--Sam

Home again

Suzanne and her sister Lynnea, from Denver, arrived at about 12:30 a.m. Tuesday.
She's sleepy and somewhat nauseated but otherwise OK. She seems to have the anti-nausea medicine regimen worked out a little better so that it's not quite as bad as it was the first few rounds. She just stays on a regular dosage, which makes her groggy and unable to drive, but it's better than being so nauseated.
She has a doctor's appointment at 2 p.m. today to check on her blood levels, etc. Lynnea is ushering her.
Based on how she felt in previous rounds, I'm sure she would be happy to talk on the phone with folks in a few days and visit in person a little next week.
Sam

Clear again...

I just texted with Suzanne. This morning, her doctor told her that her scans from Monday showed no sign of cancer. Hurrah!
She is on her way to the UW hospital to check in for round 5.

Off to the emerald city

Suzanne took off for Seattle at 6 a.m. today and I have reliable text reports that she has arrived and is comfortably ensconced at her friend Pat's place. She went to Seattle a day early this time so she could attend Pat's choir concert this evening.
Suzanne had a blood test on Friday in Fbks and it indicated she's up for round 5 of chemo on Monday. Before they start, though, she'll have scans to make sure no cancer has reappeared. There's not been any indication of such in the past two scans, so we're hoping for a three-peat.
She'll be returning late the night of Monday, June 17. Her sister Lynnea will accompany her and stay the week. I'll work that week, given that my boss is out of town and the people of Fbks still expect a newspaper in his absence.
--Sam

The interim update

Hello from Sam again.

Suzanne has been back from Seattle a week now. She has felt about the same as previous post-treatment weeks. Her blood counts were too low Friday, so she got a blood transfusion. That perked her up for a bit. Today's test showed her platelets are very low again. The white and red cells are coming up but aren't normal yet, so she's still pretty tired.

Our neighbor Lin Gale accompanied Suzanne on the flight from Seattle last week. Carol, Suzanne's mom, flew up separately from Anchorage and stayed the week. Carol did most of Suzanne's care and drove her to and from the appointments; the transfusion took nearly the entire day Friday with all the waiting and arranging. I also took the week off from work and focused on getting the garden and greenhouse planted; we got most of it done, with some help from family and friends.

The beautiful weather was certainly a treat last week. I bought Suzanne an outdoor recliner, and she made good use of it in the front yard.

Nell is working at Marty's Bakery quite a few hours every day. Louise is still looking for work. She received her certified nursing assistant license from the state last week, so she's officially eligible to be employed in that field now. I'm back at work this week.

Suzanne is planning to fly to Seattle on Saturday for her 5th round. No reason to delay it.

Wednesday update

Sam again here.
I talked with Suzanne last night. All her systems checked out OK so she started chemo late in the day.
Still no definitive decision on a fifth and sixth round, but they're looking likely at this point.

Back to Seattle

Sam writing again.

Suzanne flew off to Seattle late last night after staying an extra week in Fairbanks between rounds. This will be her fourth round of chemo. She'll return home Monday next week.

The extra week here meant she got to attend Louise's graduation from West Valley High School on May 15. Suzanne's mom and her husband Walter flew in for that event, and all the Fairbanks relatives attended except my mom, who was down with the flu.

The extra week also meant Suzanne began to feel better. Her blood counts recovered well. She went to work each day, sometimes for a full shift. That wiped her out for the evenings, though. Lots of couch time.

Getting on the plane for another round was hard for her yesterday. There's little that is novel or interesting or adrenaline-inducing about going to Seattle anymore. She knows it just means feeling sick for the next three weeks, and that's difficult to be upbeat about. The one bright spot is that she'll get to visit with Lin and Pat for a few days -- until the drugs kick in anyway.

Suzanne is planning to fly home post-chemo with Lin as escort next week. And Carol is planning to come up from Anchorage for the post-chemo week to help take care of her. I'll also take the week off to help and try to get something of a garden planted, now that the snow is mostly gone.

We're not sure how many more treatments Suzanne will have. When she began, they said she should have 4-6, depending upon how her body holds up. She seems to be doing OK, but it's a day-by-day, week-by-week assessment.

Louise took her state nursing assistant test this morning, the last step in her semester-long effort to get certified. She thinks she did well. The state license should come through in a few weeks. In the meantime, she's looking for a non-nursing job to fill the gap.

Nell, who is back from UAA for the summer, started work at Marty's Bakery last week. I think this is her third summer there now. It's great for her to be able to do that.

Thanks to everyone for your help and kind words.

Travelers and visitors

Our cat, Josephina Poot (we call her Jojo), would like to go along to Seattle. She's pretty insistent.

My sister Lynnea lives in Denver. She flew home with me after Chemo2 and made us this big pot of  borscht (mmmmm) while she was here. Can't beet that!

And my sister Elizabeth, who lives in London, joined me in Seattle and then flew with me home. She and Louise kept us in stitches @ the Michael Carroll Cancer Treatment Center infusion room while I was getting a blood transfusion (to replace red blood cells and boost my energy level). I am so grateful for the gift of this blood -- and the giggles. 

The days are flying by, in fog, in mist, in the harsh light of a clear head. I am in awe of so many things -- time thundering by; the gift of really experiencing one moment without looking ahead for the next one; trying (along with the rest of you) to find the silver lining on our May snow cloud. Mostly I feel gratitude.  Thank you.

Back home

Sam doing the posting here again.
Suzanne and her sister Elizabeth arrived in Fairbanks Monday afternoon. Suzanne is feeling very sluggish and remains prone on the couch or bed, not really sleeping but not really awake.
Elizabeth drove her to see the doctor this morning to get her blood checked. It's OK, but she'll likely get a transfusion this time to help her through things.
Right now, Suzanne plans to be here for three weeks rather than two before returning to Seattle (May 20). That will allow her to attend Louise's high school graduation May 15. It also might allow her to have a little more time at home when she's feeling better.
Elizabeth will be here until Saturday morning, May 4, when she'll fly home to London.

Good results

Sam again here. Suzanne had her mid-treatment scans on Monday, consisting of a CT scan and a chest x-ray. The doctor told her Tuesday that they found no cancer lesions, which is all we'd hoped for.
That result, and her relatively healthy blood counts, allowed her to start her third round of chemo Tuesday afternoon. She'll be in Seattle through Monday. Her sister, Elizabeth, will join her in a few days in Seattle and fly back with her on Monday.
Thanks again to all who are keeping her in their thoughts.

April 21, back to Seattle

This is Sam with the latest.
Suzanne will fly back to Seattle Monday morning (April 22) to start round three of her chemo.
There was some question whether she would be going because her blood counts were still a little down as of Friday. However, they had bounced up to healthy levels by Sunday morning. So she's planning to sail out of Fairbanks if the air traffic controllers are on duty.
Suzanne was more sick this past two weeks following the second round than she was following the first. She didn't really bounce back until Thursday of the second week home, when she was able to go to work for a bit. Last time, she stopped taking the anti-nausea medications after about a week. This time she has continued to take them occasionally all the way through last night.
We were all happy to see Suzanne's sister from Denver, Lynnea, who flew from Seattle to Fairbanks with her and stayed for four days. She drove Suzanne to her appointments, cooked, shared hilarious stories and generally held the house together. And she only got lost walking in the neighborhood woods once. Cell phones are great inventions for such circumstances.
We're looking forward next to seeing Aunt Elizabeth, Suzanne's sister from London. Elizabeth will join Suzanne in Seattle for a few days before flying back to Fairbanks with her on April 29 after round three. She'll fly out of Fairbanks the morning of May 4.
Thanks also to everyone who has been helping by bringing us food and entertainment. It has been much appreciated.

70F and sterile

The weather is always the same in the hospital.
Being on a floor where everyone is a sarcoma patient affords a unique view of the world. On the plus side, the nursing staff is deeply knowledgeable about this class of very rare cancers. They know the chemo regimen and are brilliant at anticipating and mitigating the side effects. On the other side, being amongst 30 or so other patients with my form of cancer can be unnerving. In the halls during my thrice-daily walks I see other patients pushing IV towers with the same "cocktail" of chemo drugs. Sometimes we make eye contact, sometimes we avoid it. Almost no one stops to talk. As Lin says, not everyone is into "group cancer."
I'm back home for two weeks of recuperation, and the effects of the chemo are quite different this time.
As always, we are so very grateful for our friends' generosity and good wishes.

Chemo 2/Days 1 and 2

I was admitted to the 6SE (sarcoma unit) at UW Medical Center on Tuesday at 1:30. The infusion of my two chemo drugs was started at 6 pm. The nurses here specialize in sarcoma chemo regimens, so are well-equipped to anticipate and alleviate any side effects.  I'll have one drug given continuously for 3 days, and daily 4-hour infusions of the second drug. Six days in the hospital, 5 days of infusions. Then home!

Next up -- Chemo 2

Back to Seattle on Monday for my Chemo 2 hospital stay which will begin on 4/3, Wednesday. Seattle warrior women Pat Shanahan and Lin (Gale) Burgess will again be helping me stay organized and are a huge emotional support. Andy Burgess, of Howling Dog Trail fame, gave me a buzz cut yesterday thus reducing the shedding substantially. An egghead, just in time for Easter!

We're so grateful to our friends and family for the support. In awe, really, of many unexpected kindnesses.

Chemo One - 3/12/13 to 3/17/13

This was the first of four to six treatments. I will be at the University of Washington Medical Center for each of them since the treatment requires a six-day hospital stay. Two drugs are used (doxorubicin and ifosfamide): one is infused around the clock for three days, the other once a day for four hours each time. The side effects are substantial, so the hospital stay is required to help mitigate those.

This is the standard beginning chemo treatment for Leimyosarcoma and choosing it will make it possible for me to qualify for clinical trials should I need additional treatment.

In early February 2013 I was diagnosed with Uterine Leimyosarcoma. Of the sarcomas, which as a group are rare, Leimyosarcoma is rare. And of Leiomyosarcomas, Uterine Leimyosarcoma is rare. Super.

I have always been inspired by the ancient Greek myth about Ariadne, princess of Knossos, Theseus and the Minotaur. She gave Theseus a spool of thread before he entered the Minotaur's labyrinth. He unspooled it on the way in and followed the thread to escape. Her solution to the problem was both elegant and unexpected. She out-maneuvered the beast.

This blog chronicles my battle with this disease. And, I hope, of how I out-maneuvered my personal beast.