Wendy's Journey

Day 27

2005-11-08T18:01:00.000-08:00

Today is the last week for my treatment at the Seattle Cancer Care Alliance. Wednesday I will go to the "Long-term departure " meeting, Thursday I will have my catheter take out ( put in on April 3rd in my heart)and I will meet with the doctor for the summary conference Thursday afternoon. On Friday, (11/11) I get to go home.

My general health and digestive is much improved and I am take a lot longer walks.

I am looking forward to going home to the kids and my wonderful friends to completion the recovery in Bellingham. An epic journey that I have grown so much from and have made significant health progress. I can't wait to live fully again!

Day 20

2005-11-01T13:58:00.000-08:00

My blog is dismally behind. I will try to catch you up on my progress.

On October 12, I was ready for the stem cell transplant. I was in the Seattle Cancer Care Alliance in the infusion center. I went unconscious during the stem cell tansplent and was transported by ambulance to the ICU at the University of WA hospital. I was unconscious for several hours and it was determine that I had several mini-strokes. I stayed from October 12 until October 24 in the hospital. Side effects included tingling in my right fingers, very blurry vision, problem with coordination and thought and speech patterns The good news is that I seem to recover relatively fast. I am continue to wait for my vision to be normal, but am pretty well recovered.

I am so thankful for my good care, doctors and nurses, and family and friends. Donna. Peter, Katy, Ben, Norah, Laurie, Nan, Kim. Vicky, Sue, Heather, Alex, and all of the friends and family who prayed for me and helped me during the critical time. Thanks for all the daily notes of encouragement.

I am now at the Pete Gross apartment (since 10/24) --my home away from home. I am DAY of 20 since my stem cell transplant. And am doing very well. I may go home to Bellingham betwee the 11 and 15th. I thank God helping me healing through this time.

Day Minus 0ne

2005-10-11T20:12:00.000-07:00

On Saturday I got a full day infusion of the chemo etopocide, then a day off on Sunday, then a full day infusion of cytoxan yesterday. My sister Nan was here for half they day, then Bert took over as caregiver. The cytoxan infusion is alway the hardest for me. I was sedated with benedryl for most of the day, then come home to a great dinner cooked by Bert,which didn't stay in me very long. I have been taking it it very easy, trying to take the numerous meds propholactically to prevent naueousness, vomiting and diarrhea.

Did fell better today after morning appointments and went for a walk to watch the salmon at the Ballard Locks, and then through the beautiful fall trees at Discovery PArk, west of Ballard.

Tomorrow will be transplant day zero, as will be Thursday, as there are 8 bags to infuse. I am praying for a successful transplant procedure.

Wendy and the Mariner Moose

2005-10-09T15:35:00.000-07:00

Rockin’ and Rollin’ with TBI

2005-10-09T14:55:00.000-07:00

Total Body Irradiation (TBI) took place this week on twice daily field trips to the UW Hospital Cancer Center--on Tuesday, Wednesday, Thursday and Friday. One treatment is from 7-8 AM and the second is from 4-5 PM. After a walk through the UW parking garage tunnel listening to chirping bird sounds, we headed to the first floor and the Linear Accelerator. To make the radiation beam think a human body is flat, a large plexiglass shield is placed in front of the body. The staff carefully placed a neck shield and lead lung shields. For the first 6 of 8 treatments, 2 x-rays are taken each day to confirm that the shields are correctly positioned. Some weight is on a bicycle seat, but I stand vertically for the treatments. Stripping down to my birthday suit, wearing beautiful hospital scrubs only, I am positioned on the stand in front of the linear accelerator’s beam. The technicians roll closed the stout lead door. There are six 2.5 minute treatments, three for the front and three for the back each day. Technicians and nurses watch the activity on a video monitor separated from me by the two-foot thick door. In between the radiation bursts, the door is opened and the staff check on how I am doing offering liquids, encouragement and care. In the background, we played Beatles, Vivaldi, Motown and other groups I could mentally rock out to.

This week I got 150 centrigrays per treatment, for a total of 1200 centigrays (cGy) for the total dose.

The Cancer Center staff reported that I “breezed” through this treatment compared to many others. Typical reactions include vomiting while getting radiation and passing out. TBI is designed to kill most of the cells in the body allowing the stem cells a new start. My leaner body makes the treatments easier to administer.

Common side effects from TBI include nausea, vomiting, dehydration, fatigue, and skin sensitivity. Current medications have reduced most of the side effects . A hydration IV pump and frequent small meals punctuated with naps seem to work. For the skin sensitivity, luxuriating in a hot bath nightly has been the best..

Tomorrow will starts chemo for a day, followed by a day of rest, a day of chemo, a day of rest and then the transplant days on October 12 and 13!

Charles Schultz Philosophy - Simple but True

2005-09-28T23:14:00.000-07:00

Here are some words from a friendly little posting on my mantle cell lymphoma listserve today--for all of you who have made a difference in my life:

Charles Schultz Philosophy - Simple but True

The following is the philosophy of Charles Schultz, the creator of the "Peanuts" comic strip. You don't have to actually answer the questions. Just read it straight through, and you'll get the point.

1. Name the five wealthiest people in the world.

2. Name the last five Heisman trophy winners.

3. Name the last five winners of the Miss America.

4. Name ten people who have won the Nobel or Pulitzer Prize.

5. Name the last half dozen Academy Award winner for best actor and actress.

6. Name the last decade's worth of World Series winners.

How did you do?

The point is, none of us remember the headliners of yesterday. These are no second-rate achievers. They are the best in their fields. But the applause dies. Awards tarnish. Achievements are forgotten. Accolades and certificates are buried with their owners.

Here's another quiz. See how you do on this one:

1. List a few teachers who aided your journey through school.
2. Name three friends who have helped you through a difficult time.
3. Name five people who have taught you something worthwhile.
4. Think of a few people who have made you feel appreciated and special.
5. Think of five people you enjoy spending time with.

Easier?

The lesson: The people who make a difference in your life are not the ones with the most credentials, the most money, or the most awards. They are the ones that care.

"Don't worry about the world coming to an end today. It's already tomorrow in Australia." (Charles Schultz)

Sleepless in Seattle

2005-09-28T21:58:00.000-07:00

After a wonderful break in Bellingham, I am back in Seattle. The joy of going home, being with the kids,working in the yard, picking vegetables from the garden, having friends around the dinner table, going to church, and just doing the simple routines of life was a treat. On Saturday night, I went with Ben and Peter and friends from NSEA and was honored to be inducted into the Pacific Northwest Wild Salmon Hall of Fame in Bremerton. It was a great event with 250 people. I was among a lot of great salmon enthusiasts including our WA Dept of Fish and Wildlife Director Dr. Jeff Koenings, and brought home a beautiful bronze salmon sculpture and plaque.

Yesterday, on Tuesday at 6:30 AM, Peter took friend Bert and me to fish on the lower Nooksack near the Marietta bridge. The sun came up over the Nooksack as we cast our lines across the river for a couple of hours. I caught and released a couple of small fish (Dolly Varden and trout) and watched the returning coho jump in the early morning sunlight.

Friend Sue brought me down last night and we were at the UW hospital at 8AM this morning for a CT scan. Then met with nurse Joanne, attending physician Dr. Michael Fero, and physician's assistant Sara Lill. They outlined the next steps-- the conditioning and stem cell transplant. This is what life will be like for me for the next few weeks.

October 1,2,3 Infusions of palifermin to prevent mucositis after radiation
October 4,5,6,7 Total Body Irradiation at University of WA Hospital twice daily, 45 minutes each morning and 45 minutes in each afternoon
October 8 Rest
October 9 Etoposide chemotherapy
October 10 Cytoxin chemotherapy
October 11 Rest
October 12 Stem cell transplant
October 13 Stem cell transplant
October 14 Infusion of Palifermin
Mid- End of October- Hospital stay
+ Recovery
Mid-November HOME!

The first two weeks of treatment will be outpatient at the Seattle Cancer Care Alliance Clinic and I will most likely be in the UW hospital, going in after the stem cell transplant, staying for 1 to 2 weeks. The newly infused stem cells will "seed" my bone marrow, where all blood cells will have been eliminated by the chemo and radiation.

I will have a rotating team of caregivers coming to help me with an IV backpack pump and with appointments and treatments.

The coming days will be exciting, full of learning and new experiences. Its time to rock and roll...

By the way, I am not sleepless in Seattle--yet--though am staying in an apartment located a few block from the houseboat that was in the movie, located on Lake Union!

MIRACLE-GROW

2005-09-19T08:39:00.000-07:00

I am writing from home in Bellingham after a rollercoaster of a week in Seattle. As predicted, the chemo and growth shots sent my blood counts all over the charts. Two red blood transfusions and one platelet transfusion were done, as well as four shots daily of the growth factor Neupogen (Miracle-Grow) in my tummy. I went in every morning for my blood tests and appointment, waiting for the white cell and platelet counts to rise. I had hope that stem cell collection would be on Monday, Tuesday and Wednesday, but my white cell counts stayed too low.

Then on Thursday, at the end of a yoga class, my beeper went off and the nurses called me for stem cell collection--STAT! The numbers all lined up and if the stem cells were going to flow, this was the time!

I was immediately hooked up to the aphoresis machine for 2 1/2 hours on Thursday afternoon, had a platelet transfusion, then again for a longer time on Friday- for
4-1/2 hours. They ran all of my blood 6 times through the machine. My heart started racing toward the end, so they took me off of the machine 1/2 hour early and sent me back to the apartment.

At about 5 pm, the nurse called with the good news-- the total collection of stem cells was up to 5.8 million! The doctor had wanted to get 5 million for the transplant. After a quick blood test/check-up on Saturday morning, they sent me home for a couple of weeks until the next stage--radiation, chemo, then transplant and recovery.

So one more milestone has been reached--my stem cells are now frozen at the Hutch, waiting for transplant. I arrived home to a clean house and a hot dinner arranged by friends. I am profoundly grateful to the great medical team who carefully watched me and my lab results every day. And to Heather, Sue, Barb, Gay, Kim, and Donna-- friends all who cheerleaded during the process down in Seattle. The frustrating game of waiting paid off.

"The sea, like life itself, is a stern taskmaster. The best way to get along with either is to learn all you can, then do your best and don't worry, especially about things over which you have no control." --Admiral Chester William Nimitz, quoting his father grandfather in E. B. Potter's Nimitz

The Gift of a Pencil

2005-09-12T23:42:00.000-07:00

This morning I went in bright and early at 8 AM to the SCCA clinic for my daily blood test. There was a family with grandma, mom, girl and 2-year toddler Alexis who arrived, speaking Spanish, waiting for their turn in the lab. They had driven, starting at 4 am, from Wenatchee on the east side of the Cascades, to get the one year follow-up test after the mom's transplant for her leukemia last summer. She looked great.

I folded a newspaper pirate hat for Alexis, the toddler, and he ran around the waiting room making everyone smile. Then I gave Alexis the pen I use to do the morning newspaper puzzles so he could draw. Everyone waiting for their blood tests was happy as Alexis ran hurriedly to check out every person and corner of the room.

Next I made the next daily pilgrimage upstairs to the 6th floor, the Transplant wing, to wait for the results and my daily shot. I needed something to write with in order to finish those puzzles. I asked Frank, the receptionist who keeps everyone schedules and their lives in order at the clinic, to lend me a pencil. Frank whipped out a brand new, sharp #2.5 pencil that he said I was welcome to keep.

Finishing jumbles, scrabble words, and crossword puzzles in the paper is definitely better with a pencil. Making guesses and correcting the wrong ones is heck of a lot easier and less messy to do if done with a pencil. Frank's pencil was definitely superior to my pen.

The next stop was to meet with the nurse and my newest doctor on the monthly rotation-Dr. Michael Fero. My last doctor had, in ink, written on my calendar my transplant schedule, which had me getting stem cells collected today. Well, that was in no way possible, as the nurse informed me that the blood tests showed my white cell counts had only progressed from .15 to .16 in the last day and they need to be a minimum of 1.0 for stem cell collection. I would need to be patient to wait for those white cells to grow back.

So with great disappointment I walked back to the apartment, scratched out the inked-in plan, and felt bummed out about not keeping the calendar dates as I highly anticipated. Again, the reminder was that I cannot control the healing functions of my body. I mediated on all of what the body, mind, and spirit goes through at these times. And I thought about the gift of the pencil. And my perspective changed.

I truly need to live with a pencil in hand these days. Writing a plan in script that can be erased and rewritten...and rewritten again. Words and dates that can be changed based on day-to-day new information. Adjusting life to keep up with the latest data.

I ended the day with a walk and trip up the Space Needle. I spent over an hour walking around looking at the mountains, the skyscapers, the water, the islands, and the lakes of Seattle. The view in ALL directions north, south, east, and west was inspiring.

It gave me a new perspective on how to live with a pencil in hand.

A sharp new pencil is a beautiful thing.

*Hope is the thing with feathers
*That perches in the soul
*And sings the tune without the words
and never stops at all.
-------------Emily Dickinson

The Numbers Game

2005-09-11T20:40:00.000-07:00

This has been an interesting week in Seattle. I am mobilizing for the second stem cell collection and am trying to understand how and why the test results translate into a plan of action. I have had growth shots (Neupogen)in my tummy each morning, and blood tests and the rest has been watching the numbers fall and rise after daily blood tests.

The side effect of last week's chemo and this week's shot are a little bone pain, low blood pressure, and a drop in blood counts. I had my first blood transfusion on Friday and a second on Saturday, due to low red blood cells/hematocrit. Shortness of breath, low blood pressure and lack of energy, along with numbers from the blood tests triggered the transfusions, a common action during cancer treatment. Since I had the "Cytoxin truck of chemo" (on 9/2) which hammered the blood cells, low counts were anticipated. The transfusions each lasted about 2 1/2 hours-- the nurse said that the blood most likely came from a strong and handsome firefighter :)

What a concept-- someone else's blood in me! I felt so much better with the new red blood cells--like a new woman!

The more I learn about cancer treatment, the more I realize that the doctors are paying most attention to numbers. Numbers of cancer cells, numbers of stem cells, numbers of white and red cells, number of platelets, hematocrit, hemoglobin, percentages, risks,numbers of patients in clinical trials, and numbers of patients responding to different kinds of treatments.

I daily ask the doctors and nurses what the numbers mean and am slowly developing an understanding of the art and science of transplants.

Here are some numbers from tests done daily this week:

WBC=White Blood Cells=infection fighters
Normal White blood cell counts are 4.3-10 Thousand/uL
This week my WBC count bottomed out on Friday at .07 THOU/uL. This condition is called neutropenia, when you are subject to infections and need to be very careful of sanitation, food hazards, and avoiding people with colds.

RBC=Red Blood Cells--carry oxygen throughout the body
Normal Red blood cell counts are 3.9-5.0 Thousand/uL
This week mine RBC count was at a low of 3 THOU/uL.

HCT=Hemotocrit
Normal range is 36-35%
This week my HCT was down to 26%, which triggered the transfusions. You just can't get enough oxygen attached to your red blood cells when your HCT is low.

Today they started testing my blood for the CD34 marker. We are looking for a reading of 10-- a measure that will trigger stem cell collection!

In the meantime, friend Dave Tucker and Ara Taylor came down to be my caregivers on different days this week, along with Peter and Katy coming down over the weekend. We went to the Ballard locks and watched the fall chinook salmon migrating. On Friday night we went to see the Mariners beat the Orioles. Today I walked with a friend to use my free tickets to the Experience Music Project museum, located at the Seattle Center (aka Jimi Hendrix museum) There was a Bob Dylan retrospective exhibit there which brought me right back to old feelings of activism of the late sixties/early seventies. His songs are still some of the best in the world. I was awed and inspired re-thinking what a difference all of those musicians made 30+ years ago.

Cytoxin

2005-09-03T10:39:00.000-07:00

I am back in Seattle. It is Saturday and I just completed my one day of Cytoxin chemotherapy to get the stem cells re-activated. Checked in at 7:45 AM yesterday morning and,after the daily test, was hooked up to the chemo-drip machine. First for hydration, then with Mesna to protect the bladder, then the Cytoxin 'til about 7:00 PM. Peter and Katy started out the day with me. then Peter went home and my sister Nan came up from Portland and will stay through Sunday. I threw up twice--the worst side effect seem to be mild bouts of nausea.Nan strategically pulled out a plastic bag as we were going down the elevator on the way back to the apartment.

If the doctor okays it, I hope to go to Bumbershoot, the music festival at the Seattle Center either on SUnday or Moday, afer morning tests and clinic. Depends on counts. (We won 2 tickets on the Bellingham KUGs radio station last week!) We will attempt to find the U-District farmers market today and get Katy some school supplies at the UW book store.

With my schedule now revised with stem cell collection over the next two weeks, then radiation and transplant in early October, I have decided to start on my children's book. This is a project that has been inb the making for a few years. I have debated what to write it--loons, frogs, geoducks, orcas--fish!. I think I will stick to salmon, as it is a subject I know about as well as it will be one that is hopefully well-used. Am hoping that Peter will illustrate. SO now I am collecting lots of info and will be organizing the content. Let me know if you have any sterling examples of good natural history books. So for the most inspiring to me are the Holling C Hollings books of the 1940s-50s (Pagoo, Minn of the Mississpi, Tree in the Trail, Paddle to the Sea, etc)

All for now. I am writing from the Seattle Cancer Care Alliance Resource Room--where they have lots of computers for patients. Off to the morning clinic!

SENDING Love and HUGS to All who read this!

WEndy

The Garden of Stem Cells

2005-08-28T11:11:00.000-07:00

The bone marrow is the garden of your body, with stroma cells being the soil and stem cells are the seeds. That is how my new doctor Leona Holmberg described it.

After a 1 1/2 hour meeting with Dr. Holmberg on Friday evening, we scrapped Plan A for the stem cell transplant and are now on Plan B. She methodically explained how, what and why that a new plan was needed and I made decisions with her based on the best information. She is the smartest woman that I have ever met and it is amazing how she can sort, understand, and explain the variables of this highly complex treatment.

So right now I need to produce more seeds ( or stem cells). After four days of aphoresis this past week, here were the results on my stem cell collection:

8/23 = .64 million stem cells per kg of my weight
8/24 = .52 million stem cells per kg of my weight
8/25 = .32 million stem cells per kg of my weight
8/26 = .27 million stem cells per kg of my weight

That is a grand total of about 1.79 million stem cells per kg of my weight. The mimimum number of stem cells they can do a transplant with is 3.5 million stem cells per kg of my weight and the preference is 5 million. So now I need to make more stem cells.

This is the latest plan.

8/28-8/31 GO HOME to Bellingham
9/1 Back to Seattle to Test blood and meet with doctor
9/2 Day of Cytoxin infusion + neupogen stem cell growth stimulator shot
9/3 Neupogen stem cell growth stimulator shot
9/4 Neupogen stem cell growth stimulator shot
9/5 Neupogen stem cell growth stimulator shot
9/12 Aphoresis to collect stem cells
9/13 Aphoresis to collect stem cells
9/14 Aphoresis to collect stem cells
9/15 Aphoresis to collect stem cells
9/19-9/29 GO HOME to Bellingham
10/3 Start radiation for stem Cell transplant
10/12 Stem cell transplant

So that is the news o' the day and I am off to Bellingham. It is a good time to go home, as Katy is getting geared up to go back to school and I can help her. I will re-group with the wonderful folks who have come to Seattle to take the training to be my caregivers, which now is a bit delayed.

I am not in control of how my body is performing, a scary feeling for me, but have confidence in my doctors and God to go at the pace with the treatment necessary for success.

Every day continues to be a gift and I feel thankful for it.

I will now make the drive back to Bellingham to check out life on Larrabee.

Stem Cell Collection Day One

2005-08-23T20:30:00.000-07:00

I checked into the Seattle Cancer Care Alliance clinic at 8:15 this morning, first for a blood test, then for a Neupogen shot in my belly to further stimulate stem cell growth. I lay down on a recliner bed and then was hooked up to the Aphoresis machine. Phil, the nurse (who used to live in Bellingham), put an IV in my right arm where my blood was removed. All of my blood was filtered three times through the aphoresis machine, then it was "recycled" back to me through the catheter that is implanted in my juglar vein, back to the heart. (The Aphoresis proces is when my blood is passed through a continuous-flow blood processor, where the stems cells are extracted from the normal whole blood through a centrifuge, and the remaining blood components are then returned to me.)

Son Peter sat by me for the entire process, which is pretty amazing considering he has never really liked the sight of blood! They got 0.64 million stem cells of the 5 million they need. I was a bit disappointed they didn't get all 5 million, but realize that I need to take this process one day at a time. (Some people get all collected in one day.) I need to remind myself that I am not in control of this process and trust the doctors in their work.

So I will go to the UW hospital for another growth shot at 9:30 PM tonight, be back in the clinic at 7:30 AM in the morning, have a blood test and then another shot in the morning,then start Day 2 aphoresis stem cell collection at about 9:30 AM and be at it 'til about noon. This process will go on for 4-5 days until they get enough stem cells for the transplant.

This afternoon, friend Donna Romjue came down from Bellingham and took the Caregiver/Transition class with Peter and me. We got a lot of good tips for what level of care to expect will be need once I am radiated. Then Donna's son Curtis came over to our apartment and we mothers with our wonderful sons had dinner down at Duke's chowder house outside in the evening sun on Lake Union together.

I am connecting with more and more Mantle Cell lymphoma patients--here, by email and with three people from Bellingham/Whatcom County who have called up to tell me they have been recently diagnosed with this uncommon cancer. We are all sharing experiences in our different places along our treatment journey.

Oh yes, last night I won 2 tickets from Trader Joe's to see silent Buster Keaton movies at the Paramount Theater. The Mightly Wurlitzer organ was played to accompany the movies, The Navigator and The Boat. Peter and I laughed all the way through both movies, classic funnies never grow old.

Pokes and jokes

2005-08-21T09:54:00.000-07:00

For four days I am only going into the clinic for blood tests and shots of Neupogen, which I get daily to stimulate my stem cell production. They will harvest my stem cells for the autologous transplant starting Tuesday, 8/23. So not a whole lot of action 'til Tuesday. My sister Nan and I have been taking lots of walks and I have been trying to organize my multitudes of paperwork here at the apartment and set up calendars and systems that work. We are going to the Farmer's Market on Capitol Hill and Trader Joe's to stock up today before Nan takes off for Portland and Peter assumes the caregiver role for 3 days.

Since shots are not too exciting news, today I am sharing some good jokes sent to me by good friend Heidi Alford. I love jokes, so send me any you may have!

(By the way the belly is the most painless place to get shots--especially if you've had 3 kids!)

Here is some ZEN SARCASM...

1. Do not walk behind me, for I may not lead. Do not walk ahead of me, for I may not follow. Do not walk beside me either. Just pretty much leave me the hell alone.

2. The journey of a thousand miles begins with a broken fan belt and a leaky tire.

3. It’s always darkest before dawn. So if you’re going to steal your neighbor’s newspaper, that’s the time to do it.

4. Sex is like air. It’s not important unless you aren’t getting any.

5. Don’t be irreplaceable. If you can’t be replaced, you can’t be promoted.

6. No one is listening until you fart.

7. Always remember that you’re unique. Just like everyone else.

8. Never test the depth of the water with both feet.

9. If you think nobody cares if you’re alive, try missing a couple of car payments.

10. Before you criticize someone, you should walk a mile in their shoes. That way, when you criticize them you’re a mile away and you have their shoes.

11. If at first you don’t succeed, skydiving is NOT for you.

12. Give a man a fish and he will eat for a day. Teach him how to fish and he will sit in a boat and drink beer all day.

13. If you lend someone $20 and never see that person again, it was probably worth it.

14. If you tell the truth, you don’t have to remember anything.

15. Some days you’re the bug; some days you’re the windshield.

16. Don’t worry; it only seems kinky the first time.

17. Good judgment comes from bad experience, and a lot of that comes from bad judgment.

18. The quickest way to double your money is to fold it in half and put it back in your pocket.

19. A closed mouth gathers no foot.

20. Duct tape is like the Force. It has a light side and a dark side, and it holds the universe together.

21. There are two theories to arguing with women. Neither one works.

22. Generally speaking, you aren’t learning much when your lips are moving.

23. Experience is something you don’t get until just after you need it.

24. Never miss a good chance to shut up.

25. We are born naked, wet and hungry, and get slapped on our ass. Then things get worse.

26. Never, under any circumstances, take a sleeping pill and a laxative on the same night.

27. There is a fine line between “hobby” and “mental illness.”

28. No matter what happens, somebody will find a way to take it too seriously.

29. There comes t\a time when you should stop expecting other people to make a big deal about your birthday …around age 11.

30. Everyone seems normal until you get to know them.

31. If you think you are too small to be effective, you have never been in bed with a mosquito.

ALL FOR NOW.

Ready, set, go!

2005-08-18T22:55:00.000-07:00

I met yesterday with Dr.Oliver Press to find out my latest health status and treatment plan.I was elated to find out that all of my numerous tests of the past two weeks indicated that my cancer was out of my bone marrow and that my body was pretty much normal. Blood counts, bone marrow, lumbar puncture, CT scans, PET scan, mammogram, chest Xray, MUGA and pulmonary tests--ALL TESTED OUT NORMAL. The chemo did its work!

Besides all of this, I again got free tickets to a Mariners game, which my sister Nan and I went to and had the pleasure of sitting between home plate and first base, and we watched the Mariners beat Kansas City! And Katy, Nan, and I went to the Columbia City Farmers Market and had dinner with dear friend Claire and her daughter Chantae. A good day!

So this is what is next:
1. Stem cell mobilization: I will get shots of G-CSF (Neupogen) starting Friday, August 19th and continue every day for four days. The shot will stimulate stem cell growth. My stem cells will be collected on August 23rd. If they don't get quite enough, the more shots and collection on the following days until they get 5 million for every kilogram of my weight.

2. Conditioning: This will be followed by four days of Total Body Irradiation (TBI) at the UW hospital, on August 30 through Sept 2. (I met with the radiation oncologist today to see the machine I will be strapped to.) The purpose of the radiation is to condition the bone marrow for the transplant. I will have two 45-minute sessions per day for four days. Further conditioning will include chemotherapy.

3. Stem cell transplant: Planned about Sept 7th.

4. Waiting for Engraftment

5. Engraftment

6. Recovery after engraftment

7. Long Term Recovery

I agreed to be part of several studies, donating extra blood and stem cells, as well as agreeing to taking experimental drugs that produce stem cells faster, throughout my treatment. I feel strongly that the more knowledge we have about this emerging science, then the faster we can find a cure to lymphomas and other cancers.

Nan, Katy and I walked around Green Lake tonight under the full golden moon. I thought about this same moon shining all over the world tonight. We are so blessed with beauty around us and within us and the drive we have to live fully in the moment with those around us. I thank our creator for this beauty.

Tests

2005-08-15T22:19:00.000-07:00

I finally am back on-line to update the blog, thanks to the help of Joanie, Dale, --and Christine from Florida, whose daughter is getting treatment here. I have officially made the transition from dial-up internet to the DSL cable.

The last 1 1/2 weeks have resulted in the completion of many tests to determine the staging and protocols for the treatment of the cancer. They include bone marrow samples from both hips, mammogram, PET scan, lumbar puncture, chest X-ray. pulmonary test, blood test,dental Xray, MUGA test (heart), EKG,cultures, and more.
You name it, they know me inside and out. Lots of pokes and probes and pictures. With the tests all finished last Friday, I now will meet with my attending doctor-- Dr. Oliver Press-- for the data conference on Wednesday to discover what is next.

I have been able to go home to Bellingham for the last two weekends. Each weekend there has been a wedding with friends and lots of catching up on home chores.

Katy is with me in Seattle this week and is taking a tennis camp every afternoon.

My sister Nan and friends Laurie and Vicky will be here tomorrow to take the caregivers "Managing Care at Home" class. Eli, Katy, and I took it last week along with the nutrition class. The education they provide to patients and caregivers at the Hutch along with the treatment here is very useful. Here there is a shifting emphasis from hospital to homecare, with patients, families and friends assuming more responsibility for care. Once I start the chemo and radiation, and during the stem cell transplant, I will need to have folks here everyday to help out. I could do the whole thing outpatient, staying at the apartment, although most people check into the UW hospital if a fever or infection set in.

...from the Caregiver's Manual.

"There are only four kinds of people in this world:
Those who have been caregivers
Those who are currently caregivers
Those who will be caregivers
Those who will need caregivers."

--quote from Rosalynn Carter's colleague

Days 1, 2, and 3 in Seattle

2005-08-05T22:19:00.000-07:00

Day 1---8/3/05

Today was my first day at the Seattle Cancer Care Alliance in Seattle. I drove here with my sister Nan and started a series of five appointments at 1:00 pm. I am assigned to work with the Aqua Team in the Transplant Unit. Being a water lover, I immediately thought that this is a GOOD OMEN.

Every day I get a personalized itinerary that lists all appointments and procedures, as well as when and where I need to be. In just one afternoon, it went like this:

1:00 pm—Meet Physician’s Assistant Sarah Lill for History and Physical
2:00 pm—Meet Nurse Joanne (a 24-year oncology nurse) who examined my Hickman catheter, took vitals, and answered all of my questions about the process.
3:00 pm—Blood draw in the lab
3:15 pm—Chest X-ray with Radiology
4:00 pm—Vein check in the Aphoresis Unity

At 5:00 pm we were finished for the day and checked into the Pete Gross House. My one bedroom apartment is extremely clean and efficient. All of the 60 apartment units are filled with folks from all over the world who are here for their cancer treatment. Almost everyone here has no hair from chemo/radiation, so we all are part of the hairless clan. The Pete Gross van takes us in about 2 minutes to the Seattle Cancer Care Alliance (SCCA), or we can walk there in about 10 minutes. We are not allowed to have any flowers or plants here, as they have potential molds and mildews on them.

The view from the SCCA and the third floor apartment is spectacular—looking over busy Lake Union. Float planes, sailboats, and many other activities are constantly going on down below. We walked to REI for dinner at the World Wrapp. I am living about 10 blocks from the Space Needle/Seattle Center and about 6 blocks from REI. If any one wants to come and visit and have a place to stay, there is a foldout couch here!

My phone number here is 206-262-9028 and the address is:

Wendy Scherrer
c/o Pete Gross House
525 Minor Avenue N. Apt. 313
Seattle, WA 98109

My first impression is that the treatment offered by the SCCA/Hutch/UW is serious, highly professional, and top-notch. The patients that come here are seeking the best treatment in the world and are in good hands. The medical team/machine is well coordinated and state of the art. I am blessed to be a patient here.

Day 2---8/4/05
Nan walked me through the morning appointments, which included meetings with my social worker, a nutritionist, and then the finance department. Then we stopped in the chapel where, serendipitously, there were 3 women doing meditations from Taize, France. (My parents went there and we sing these chants at church.) At three o'clock, we met with the nurse Joanne, as well as the doctor, Dr. Oliver Press. Nan and my friend Heather Higgins-Aanes from Bellingham also listened in and took good notes. We met for about one hour to go over information and to answer all of my numerous questions.

Here are few things that I learned:
--Dr. Press strongly recommended that I do this stem cell transplant, as I am now in remission and this is the best recommended treatment to do as soon as possible.
--After I finish the many tests over the next week, I will get growth factor shots daily, I will get chemo, and then they will harvest 5 million stem cells per each kg of my weight. They will harvest the cells out of my Hickman catheter, put them through an aphoresis machine, the return the extra blood through the vein in my arm. The stem cells will be frozen and can be stored in DMSO for up to 5 years. They do about 150 of these autologous transplants each year at the Hutch. I will do my work in as much outpatient treatments as possible, and will use the UW hospital as a back-up if infections or complications arise. After all of the test are completed next week, Dr. Press will again meet with me to analyze and prescribe the specific treatment.

I discovered the beautiful rooftop garden at the Pete Gross apartment house. Lots of flowers, beautiful furniture and views. Heather cooked a delicious and healthy dinner will all local foods-- salmon, roasted vegetables, new potatoes and a fresh salad. The view from the rooftop deck looks west to the Space Needle and Seattle Center, and to the north over Lake Union.

Day 3---8/5/05
Heather came in and woke me up at 6 AM this morning (thank you Heather-- as my alarm didn't go off!), as the first appointment was at 7 AM. We walked in the beautiful morning sunshine to the SCCA, where a sedation nurse gave me a lollipop drug and Ativan to relax me before doing bone marrow aspirations from both sides of my hips. This was followed by a blood draw, then we walked back to the apartment to rest. I promptly threw up all of the medicine and water on the way and slept a couple of hours upon returning. Heather had lunch waiting when I woke up. In the afternoon, appointments included dental X-rays and a meeting with yet another nurse who continued to go over self-care, caregiver roles and transitions throughout the treatments.

The drive was long back to Bellingham with a lot of traffic on a busy Friday evening, and we returned about 7:30 PM. The house is still in one piece and Ben had a delicious Greek salad waiting. My next appointments are on Tuesday, August 9th.

Seattle here I come!

2005-07-15T19:29:00.000-07:00

Dear friends and family,

I am excited to share the next few steps of my journey to health with you. I will be entering Fred Hutchinson Cancer Research Center in Seattle on August 3 to start the stem cell transplant process.

I will start with about 3 weeks of outpatient treatment at the Hutch followed by up to 5 weeks in patient at the UW Hospital and another 3 weeks outpatient treatment.

During this adventure I will need some help both in Seattle and on the home front. The Hutch recommends caregivers assist me during all of the outpatient treatment and as an advocate during the in patient experience.

My sister Nan from Portland will escort me to The Hutch on Aug. 3 and my kids will assist during that first week. I will be home for the weekends of August 6-7 and 13-14. The Hutch offers classes for caregivers daily (M-F afternoon) to prepare any of you who want to assist.

The first week will be filled with appointments, tests, evaluations and preparation. A medical team headed by world lymphoma expert Dr. Oliver Press will oversee my treatment and make decisions regarding medical issues. Ten to fourteen days later after another medical conference, I can start the mobilization chemotherapy for collection and conditioning for the transplant.

Therapy for transplant will begin immediately after the stem cells are collected and last about 3 weeks inpatient at UW Hospital. Watchful waiting comes next to understand if and how my body responds to the treatment.

The actual length of the hospital stay and the length of the final outpatient recovery depends on blood cell counts, platelets and my medical stability, again determined by my medical team.

A Long-Term Follow-Up team will provide specific instructions for the next several months.

I am thinking now about how best to use all of your willing helpful hands. I’m working on a calendar for specific days I will need caregivers while in Seattle. I will work with Kim Brown to coordinate specific needs both for me in Seattle and for the kids in Bellingham.

I bet the kids would really appreciate some company for dinner, cookies and home cooked meals a couple times a week.

Love, peace and healing,
Wendy

Round 5

2005-07-05T15:22:00.000-07:00

I am at St. Joseph's hospital once again, for Round 5 of chemotherapy, from July 4-7. Friend Donna Romjue brought me a great red, white and blue bouquet with stars shooting out the top. I saw the fireworks on TV from the other Washington (D.C.), after talking to my dear friend Clare Cuddy, who lives there and was going to a potluck at the newest Smithsonioan museum, the Museum of the American Indian, where she works.

I am doing the same chemo treatment plan as Rounds 1-4, with 3 hours of Rituxin on afternoon #1, then 4 other chemo cocktails throughout my 4-day stay. No significant side effects at this point. I am currently on Day 2 and have found a computer in the third floor solarium that patients can use. It is also a room with a view, with plugs for my 2 - 3 IV pumps. The nurses gave me a beeper to put into my pocket so that they can find me!

I chose to go into the hospital on the holiday, July 4th, as the 3 kids and I are all going to a wedding in Mazama on July 8. Yarrow Moench, a dear family friend, a student I taught in 3rd-5th grades and who was my intern last summer, is getting married. She is now a collegiate track and cross country coach, as is her sweetie Steve, and will be living in Iowa coaching at Luther College.

Friends Kim and Tucker called today from England, where they are vacationing after picking up daugher Kailyn from Schoo. Amazing to hear voices so crystal clear across the world.

All the news for today! Sending out lots of love to friends and family.

Round 4+

2005-06-25T10:45:00.000-07:00

The fourth round chemo in St. Joes was from June 13-16. Other than a bit of nausea, I went through this treatment well. I try to walk 2-3 times daily while in the hospital and go as far as the batteries will let me on the IV poles. Have discovered the garden and the chapel at the hospital. Nice places for fresh air and contemplation.

The last day at the hospital was time for another bone marrow aspiration (my favorite test... NOT!) and then a CT scan to upgrade my progress.

Since being home, I was happy to get a call from my old friend Chris Eaton from high school days. She just spent the last three days visiting from San Luis Obispo. We had a lot of great time together reminiscing about the sixties and seventies and she got reacquainted with the kids and my new journey. Took lots of walks and did lots of errands and catching up together. Had a great Thai dinner last night with all of the kids and Chris, followed by a sunset walk along the bay.

Have been working with Peter and other builders to remodel the studio space in our house to become a rental unit. The boys made great progress when I was in the hospital and put in windows and erected a wonderful cedar tree post in the room. The plumbers and electricians are now finished and the boys are sheetrocking the walls in today. The transformation looks great and I hope we can get the work done in the next month. Lots of little choices now on kitchen cabinets and details.

Chris came with me to yesterday's appointment with Dr. Nestor to find about the results of the bone marrow aspiration and CT scan. The CT scan again showed my lymph nodes and spleen to have returned to normal size. The number of cancer cells in my bone marrow has reduced 99% since the chemotherapy has started. There remains a count of 7 cells in 10,000, so one or two more sessions of chemotherapy are necessary. I will go in again from July 5-8 to St. Joseph's hospital for Round 5, then re-assess the need for Round 6 during the last week of July. Between Rounds 5 and 6, I will meet with the doctor at the Fred Hutchinson/Seattle Cancer Care Alliance to mobilize the Stem Cell Transplant process. If Round 6 is needed, then I would go back to St. Josephs Hospital from July 26-28.

So there are a few unknowns and few knowns at this point. Living one day at a time is the only way to be able to proceed. I feel grateful to feel healthy enough to take walks, work with the kids on projects, cook, clean, garden, and live fully each day. I find my memory is a bit hammered by the chemo--I have more excuses for forgetfulness than senior moments now! I thank God, my doctors, my family and friends for the strength to continue the healing journey.

Sunday update

2005-06-05T17:48:00.000-07:00

Greetings after a busy week. My brother Guy was here from Utah until last Sunday and helped a lot when I was in the hospital. He did a lot of running around with the kids, watched Katy's final tennis matches, and helped Peter with the studio re-model.

We had a celebration of Peter's graduation from California College of the Arts on Memorial Day. Lots of his friends stopped in for a BBQ and croquet. I feel so lucky that the three kids are here to support each other and me this summer.

My two nephews from California, Frank and Mark, were here from Monday through today (Sunday) and helped out a lot with projects. They worked hard all week and helped Peter demolish the interior walls of the studio and frame in the new space. This is our summer family project. Peter and I took Frank and Mark to Vancouver Saturday, as they had never been to Canada. We went to Stanley Park, the aquarium, Granville Island, the UBC anthropology museum, and ended up in White Rock. My strength kept up remarkably well all day! I feel so lucky to have such wonderful support from my family

I have been out of the hospital now one week after Round 3 of chemo. The good news that Dr. Nestor had when I was last in the hospital was that the CT scan done on May 19 after Round 2 of chemotherapy showed that my lymph nodes and spleen were of normal size. If, after Round 4, my bone marrow shows no cancer cells and the lymph system looks normal, then I will proceed earlier with the stem cell transplant (SCT) in Seattle, maybe not going through rounds 5 and 6 of chemotherapy.

I will go back in on June 13th for Round 4 of chemo. After Round 3, I felt a little more hammered-mainly sore and fatigued,with various reactions during the day in different areas of my body. I hope that my white and red cell counts will be up this week to continue on the accelerated schedule of 21 day treatments.

I get about 10-20 emails each day from mantle cell lymphoma (MCL)list-serve participants. Several people who have this disease share their treatments and ideas, frustrations and triumphs. I feel lucky to be responding so well to the treatment, as not everyone does. It seems that there are not a lot of experts around the country for this disease, the research is fairly new and inconclusive and new treatments are being piloted all of the time. MCL is fairly rare and there seems to be a lot of variations between individuals on the symptoms and response to treatment. The more I read, the more it is obvious that it is up to the patient to find out all of the options and be very proactive with the medical community on a picking treatment plan.

In addition to my chemotherapy and many medicines, I am doing acupuncture, massage, energy healing, getting good nutrition, and exercising as much as possible. I believe that healing needs to intergrate the mind-spirit-AND-body.

A continuing thanks for the food, water, cards, flowers, help and support from all. (Thanks Shari for sewing the angel on the prayer shawl today.) I am profoundly grateful to all who surround us with their care and love.

"It is in touching and letting ourselves be touched, we experience the power of God."
---Dorothee Soelle

Round 3

2005-05-23T19:07:00.000-07:00

Tomorrow I go in to St. Joseph's Hospital for Round 3 of Chemotherapy and will be there from May 24-27. My energy levels have rebounded and blood counts are up, so I am going in one week earlier than originally planned, 4 days in, then 17 days out. A 21-rotation, instead of 28. My brother Guy is coming from Utah for Round 3 and will be home with the kids.

I took a hike up to Fragrance Lake at Larrabee State Park yesterday with the 3 kids and our friend Eli. I felt lots of energy and we all marveled at the beauty of our backyard forest--magnificent cedars, delicate wildflowers, plus Peter and Katy found lots of salamanders too. It was Katy's 17th birthday yesterday. I can't believe that my youngest is now a young woman. We had a shishkabob party with croquet and lots of her friends popped over for cheesecake in the evening.

Peter is home from college (the Graduate) and is re-grouping for a summer in Bellingham. It is great to have all three kids together.

I was honored on Saturday night at the ReSources dinners with an "Environmental Hero" award for 20 years of work in restoration. It was inspiring to be around many others who have a passion for and have made a lifelong commitment to the environment. It was obvious that the long-term work of environmental education, restoration, advocacy, and preservation is never complete, but has to have people who are committed to ongoing decades of work.

Don Drake of the Whatcom Community Foundation gave a good speech at the Saturday event about community, and shared this wise little story which I am passing on, called TWO WOLVES:

One evening an old Cherokee told his grandson about a battle that goes on inside people. He said, "My son, the battle is between two wolves inside us all.

One is Evil. It is anger, envy, jealousy, sorrow, regret, greed,
arrogance, self-pity, guilt, resentment, inferiority, lies, false pride,
superiority, and ego.

The other is Good. It is joy, peace, love, hope, serenity, humility,
kindness, benevolence, empathy, generosity, truth, and compassion.

The grandson thought about it for a minute and then asked his
grandfather: "Which wolf wins?"

The old Cherokee simply replied, "The one you feed."

Way to Go

2005-05-14T17:43:00.000-07:00

I received the news this morning when opening the Bellingham Herald. Our pastor from the First Congregational Church died yesterday (Friday) at home. Donel McClellan found out that he had cancer less than one year ago and more recently found that it was imminently terminal. If you haven't visited Donel's blog, it can be found at www.hellbox.org/donel

I never knew what a blog was before Donel started his up. (He was alway ahead of everyone in the computer world.) His dance with cancer was chronicled almost daily by himself and family members. (Much more regular than my updates--I promise to be a more regular writer!)

Donel's openness about his story was a inspiration to me. When I was diagnosed with Stage 4 lymphoma, and encouraged to start a blog, I couldn't imagine being so public about something so personal. But Donel's candid words were an inspiration. The blog is not only a posting to update my friends and family near and far about my journey, but it is a time and place for me to reflect on the meaning of this disease, the processes of of healing, living and dying.

My friend Vicky gave me Lance Armstrong's latest book, "Every Second Counts." His first book, "Its Not About the Bike" was his record of his cancer treatments and how he dealt with the mental and physical implications. In the new book, Lance reflects on the nature of surviving cancer. "What surviving cancer teaches you is the magnitude of your dependence on others, not just for self-definition, for your mere existence. Cancer robs you of your independence; you're reliant on friends, family, and complete strangers, stoic doctors and nurses, and when you finally recover, you're never casual again about your place in the human chain."

In the the whirlwind past two months since my diagnosis and treatment started, I am more and more aware each day of the interdependence of my mind/body/spiritual/social needs. Whereas I have alway advocated for recognition of the interdependence of animals and plants and the relationships that people have with the earth that can either help or hinder the web of life, I have not truly understood the web of the human community and the powerful connections that can be woven, broken, and healed. It is okay to be robbed of your independence--because strength, transformation and healing can only come from connecting most strongly with the self, the community and the spirit.

Way to go, Donel. You knew how to live and how to die. Your kind work as our pastor has paid off in so many ways. You continue to be an inspiration as I pursue my dance with cancer.

2005-05-03T16:50:00.000-07:00

St. Joe's, My House of Healing

2005-05-03T16:47:00.000-07:00

Healing, one drip at a time.

St. Joe's, Round 2

2005-05-03T16:00:00.000-07:00

May 2, 2005

I am writing from the laptop in Room 231 in the Medical Care Unit (MCU) at St. Joseph’s Hospital. I am in for Round 2 of chemotherapy. I checked in at 9 AM today and got “plugged in” a little before noon. Hospital time always seems to be in slow motion. One step at a time-not too efficient, but the job gets done. I will be here for four days—‘til Thursday, May 5. I have 5 bags of chemicals going into my body right now and am feeling no negative side effects. I am thankful that so many of the negative interactions from chemo have been minimized. It is good to see some of the same nurses that I got to know last month.

I may be starting a new treatment schedule—coming in every 3 weeks instead of every 4 weeks for my chemotherapy. This would speed up the 6 treatments, and is contingent on my white blood cell counts rebounding as fast as they did in April.

Katy just left after a nice visit tonight. She is now 11-0 in her tennis matches with 3 more matches to go before the league final matches. Peter is getting ready to graduate with a painting major, BFA from California College of the Arts on May 15 and will be driving up from San Francisco following graduation. Ben is the middle of spring quarter at WWU and is getting ready to go back to Lawrence, Kansas for the National Collegiate Final bike races. 5 WWU men are going next weekend for the races on May 14-15.

Last week was a busy one. I am trying to walk at least one hour each day, which has been a wonderful time to connect with old and new friends. Lots of walks around my old haunts—Connelly and Padden Creeks.

I took a wonderful ride on Friday evening to Sucia Island on the Snow Goose to pick up over 30+ kids who were doing environmental education for the week. The islands are always beautiful and fresh. Bert and Sue graciously invited my to come along to get the group--½ from Huxley College and ½ from an alternative high school in Sedro-Woolley. Everyone seemed to have a great time. Environmental education has come a long way in the last 32 years since I was at Huxley. Lots more integration with good science and art.

Friends came over Sunday to help with the garden. Lots of buttercups got weeded out of the strawberries and a new little native plant garden got planted with maidenhair ferns, deer ferns, wild ginger, and trilliums. I am going more native in our garden every year.
Our local plants are so amazingly beautiful. Ben’s vegetable garden is growing fast.
And tomato starts went in. Everything is growing fast and is early this year.

With my hair gone, I am amassing a great collection of hats and scarves. Friends have been dropping off favorite head gear and Katy picked out some nice sun hats for me. Whereas hair has been the aura, now hats create my image. It is fun to experiment.
Some friends also sewed some “prayer flags” for me, which I think is a Tibetan tradition.
I will hang them when I get home. Several are left with space for messages, so I am hoping that people will drop by and write and/or draw on them.

I want to express my continuing gratitude to all of the folk helping us out—gardening, yard work, cleaning, flowers, food, chauffeuring, books, cards, CDs, computer help, walks, looking out for Katy, hats, scarves, phone calls, NSEA work, prayers, and all of the other simple and gracious acts of kindness that have been coming my way.

2005-04-27T13:48:00.000-07:00

The Blooming of the Buddhist Monkette

2005-04-27T13:47:00.000-07:00

Spring Gypsy

2005-04-27T13:40:00.000-07:00

Family Support!

April 24, 2005

2005-04-24T20:02:00.000-07:00

This week was one full of learning and good energy.

On Monday, a friend took me to the Seattle Cancer Care Alliance, a cooperative partnership between the Fred Hutchinson Cancer Research Center, the University of Washington, and Children's Hospital, an awesome resource just 90 miles down the road. The clinic is right next to the Mercer St. exit in a building that overlooks Lake Union. There were lots of wonderful volunteers and resources there. People come from all over the world to go there. I was the only one I met from Washington State!

At the "Hutch" I met with both a lymphoma specialist and a nutritionist. Dr. Petersdorf gave me a great explanation about mantle cell lymphoma and treatment options. He recommended that I continue my course of treatment of chemotherapy through the summer, until remission, then a go through stem cell transplantation. It would be an autologous transplant, which would be from my own body. This would require about 6 weeks in Seattle at the end of the summer. Two weeks outpatient treament, then four weeks in the University of Washington hospital for the transplantation process. I will discuss this option tomorrow with my local oncologist, Dr. Patrick Nestor. This would happen at the end of summer--August or September.

The nutritionist spent over an hour with me, reviewing my diet and educating me on recommendations for the best food. It was great to find out that the best diet is what I am already eating. Lots of protein, fruits, veggies, fish, whole grains, few sweets--plain healthy eating! She recommended lots of walking--3-4 miles each day. So I hope that all of you will come by for a walk with me!

Oh yeah, I lost my hair this week. All of a sudden it was itchy, then tingly, then in about 3 days it was gone! POOF! I now can relate a bit more to Zen monks. New discoveries include how to tie scarves just right and ways to keep my head not too hot and not too cold. Got to look out for sunburn too! Katy has been great about finding good hats to wear. Maybe I can get someone with a digital camera to get a picture of my hairless head.

Highlights of the week:

Walks with friends
Watching Katy (w) in 3 tennis matches!
Listening to local live music at the Roeder home
Blooming lilacs
Cards from friends
Planting 300 native plants with the Sehome High School Earth Service Corps for Earth Day.
Spring!

I will be home this week, then in the hospital for the 2nd round of chemo from May 2-5.

Thanks for all of the great notes, calls, and acts of kindness.

Here is a Inuit poem sent to me from Waldron Island this week:

MAGIC WORDS

In the very earliest time

when both people and animals lived on earth,

a person could become an animal if he wanted to

and an animal could become a human being.

Sometimes they were people

and sometimes animals

and there was no difference.

All spoke the same language.

That was the time when words were like magic.

The human mind had mysterious powers.

A word spoken by chance

might have strange consequences.

It would suddently come alive

and what people wanted to happen could happen.

Nobody could explain this:

That's the way it was.

April 17, 2005

2005-04-17T20:06:00.000-07:00

Okay, it is time to get going on this BLOG. Thanks so much Dale for setting it up. It has taken me a while to get to this, but here I am finally. All of the multiple tasks and information going through my wee brain in the past month have been overwhelmingly. I finally, today, feel that things are calming down and in control.

It is Sunday, April 17 and a beautiful spring day in Bellingham. I woke up and felt great this morning--lots of energy and no aches and pains. Katy and I went to church, then I had lunch with friend Vicky and took a walk along the new boardwalk at Boulevard Park. It was windy and beautiful. We saw a loon diving, a harlequin duck and grebes all fishing. Probably catching all of those salmon fry heading from our local streams out to sea.

Every afternoon sometime between 3 and 6 I take about a 2 hour nap, which seems to be a good healing time. Today was a good sleep. When I got up, a friend brought by a hot rhubarb pie.

So here are two weeks of updates and I hope to post most regular entries from now on!

The nurses at St. Joe's during my first week of chemotherapy all were wonderful. Especially great were nurses Stephan and Pat. Stephan, father of 3 10-month old triplets, sat with me patiently late in the evening and instructed me on what to expect, how to manage all of the variables, and gave me a wonderful piece of advice-- to set up a chemo-journal--documenting my treatments and my reactions to the treatments. This was an incentive to set up a 3-ring binder with all of the meds, calendars, blood test results, appointments and other miscellaneous information.

Another stand-out nurse of 30 years was Pat who sat down, assured me I had the right attitude, and instructed me on the details of what are the top methods of healing.

Home this week had its ups and downs, vomiting and up all last Sunday night, then new medication on Monday to manage the nausea. Bone aches and pains and fatigue seem to be the other major side effects. Rest and drugs seem to work well together to deal with both.
I go to the Madrona infusion center Monday, Wednesday, and Friday mornings to get my blood tested. I am thankful to have the Hickman catheter that was surgically implanted in my jugglar on my first day in the hospital. Except for occasional shots, I have no needles with all my blood tests and medicines.

A friend dropped by the ORGANIC PRESS today, which is a monthly, wtih the April issue dedicated to the topic of Journey through Cancer. Instead of conjuring up cancer as an image of death or spiraling downward to some uncertain end, I rather like the image presented of cancer being a lesson, a gift, a journey...

I am definitely on a new individual journey. A journey of healing.

HEALING IS

A journey into wholeness
Seeking harmony and balance in life, in family, in community
An instant of transcendence--above and beyond the self
Embracing what is most feared
Creativity and passion and love
Seeking and expressing self in its fullness, its light and shadow
Remembering what has been forgotten about connection, and unity, and interdependence among all things living and nonliving
Learning to trust life.

Most of all, my healing is coming from my unbelievably wonderful friends and family. You are all my angels. Helping with finances, cleaning our house, cutting my hair, bringing us food, teaching me visualizations, sending gorgeous bouquets and baskets of flowers, helping me with trips to the doctor or to pick up prescriptions, mowing the lawn, setting up support for the kids, covering work at NSEA, helping Katy with her school projects, watching Ben at his bike race, meeting with bankers and lawyers and doctors, researching the best ways to heal, helping with email and BLOG communications, spiritual support, legal help, insurance help, cards, books, on tape, trip to Eliza, music on CDs, books to read, teaching me restorative yoga poses, dream dinners, offering your prayers, building shelves, getting extra appliances, and ALL OF THE SUPPORTIVE AND LOVING WORDS have boosted me up and are holding me high.

I go into this healing journey with a most profound awe and gratitude to ALL of my old and new friends who are with me. I truly feel blessed with the gifts from all of you. I love you all.

2005-04-06T20:04:00.000-07:00

Last minute blog setup before heading out to hospital, Day 1.

Day 1 at St. Joe's

2005-04-04T11:29:00.000-07:00

Today I check in at St. Joseph's Hospital to start my journey toward healing this lymphoma.