Joyous Holidays

Joanne and I had a successful medical trip to Seattle last week. Her CT scan came back completely normal - no infection, no signs of cancer. She then had her IP port removed by Jeffrey. I saw my orthopedic surgeon and had sutures removed and a royal blue cast applied (I turned down the white "glow in the dark" model). A good day was had by all! Thanks to Laura Lippman for driving us back home and keeping us company for a few days.

We are now enjoying the lights, the music and other rituals of the holidays and awaiting the visit of my family from Idaho.

Many thanks to all of you for the visits, meals, cards, prayers and general support. We are so blessed to have so many wonderful angels in our network. May your holidays be rich and meaningful. We anticipate a new year of health and joy and more peace on this planet.

Life as Viewed from a Chair

Joanne and I both continue on the road to healing, although I'm the identified patient right now.

Surgery went well. Swedish hospital is like a 5 star hotel compared to VM. Even the food is quite healthy and good. You order it just like room-service, from a menu, 24/7. OK, clearly I'm impressed by small things. . . As good as it was, I was eager to get to our home, a true 5-star abode.

After a few days of screaming bone pain and yucky nausea, I am feeling more human. My life is mostly confined to two places: my brown leather "stress-less chair" in the living room and my bed in the downstairs guest room. The chair is great. The bed so-so (I apologize to all our guests who have had to sleep on it). I maneuver with a roll-about and wheelchair. Both sites provide me with a view of the water, Mt. Baker and the passing fury of the storms. It could be much worse.

Life is simple for me these days. Getting caught up on old, unread magazines, reading books, watching movies from Netflix (I LOVE that company!) and taking narcotic-induced naps, all with several felines on my lap.

We did have an adventure last night. We had tickets for Lily Tomlin and were committed to going. Yes, we had at least four inches of snow on the ground and it was snowing heavily with very icy roads. Fortunately, our dear neighbors, Cindy and Vanessa, offered to feed us dinner and take us with them to the show. I must admit that I have never maneuvered a wheel-chair in the snow before last night. It was a team effort, especially since stairs were involved. A real lesson in surrender and trust for me, made easier by the competence of these strong women. It was a great night and a treat to get out of the house, even in a blizzard!

Joanne and I each have a next step in Seattle next week. On the 9th we go down South for a Seattle Men's Chorus concert. The next day she has a CT scan to monitor her fluid pocket and surgery to remove her IP port. I have an appointment with my surgeon (at the same time!) to have sutures removed and be casted. Different hospitals. My dear friend, Laura, will be chauffeuring us both to these events and then home to Bellingham, as neither of us will be able to drive! What a pair! We are each comforted by the thought that this year, 2007, will soon be a distant memory.

We cut down our Xmas tree last weekend, the house is decorated for the holidays, Joanne is getting stronger every day, and LIFE IS GOOD.

Gratitude

It's hard to believe it's been almost three weeks since I posted. I've been drowning in work (a good thing!) and the time has literally flown by.

Yesterday Joanne had her last chemo treatment!!! It wasn't without incident, of course. Her systemic port was clotted and it took over an hour to unclot it so they could draw blood and give her the chemo. Unfortunately, we had to cancel our celebration lunch - will do it this weekend.

We have so much to be thankful for today. We are both alive. We celebrate our partnership, our cat-children, our friends and family, our clients, and our general well-being.

My major orthopedic surgery is November 27th at Swedish Hospital in Seattle. Joanne and I get to switch roles for a bit - she becomes the caretaker. I will literally be off my feet for several months - a huge challenge for me in many ways!

So, this weekend is a time of getting in all the biking I can, stocking the freezer, and Joanne's birthday celebration. A good time will be had by all.

I don't know what my relationship will be with this blog in the future. Our vision is that Joanne will continue her healing and get stronger each day. My challenge will be staying out of that fear place around recurrence. We plan to celebrate and live fully each day that we have.
We are making plans. . .

May your Thanksgiving be rich and joyous.

We're Moving Forward

The docs have finally communicated and it appears that Dr. Rubin is only comfortable giving Joanne's last chemo over three doses, instead of one. So that means that she will get 1/3 the normal dose this Wednesday, next Wednesday and the 21st. That will be the end of her chemo!
We will have much to be thankful for this Thanksgiving as we focus on her regaining her health and energy.

It has been three weeks since chemo and Joanne has been getting so much stronger each day. We're hoping the "mini-doses" will not have a huge effect on her energy - we'll see. She still needs to get shots to stimulate her red and white blood cell count.

The rat apparently has disappeared - hasn't been seen in three days. I hope he's moved on to greener pastures. He was a very cute rat. . .

The Waiting Game

It's amazing to me that I am still blogging about "waiting". Maybe that's what cancer world is all about: waiting for blood tests, physicians to call, the next treatment decision, recurrences.

This past week was about indecisiveness. We are presently caught between two physicians who see Joanne's situation very differently and are having difficulty talking to each other.

Joanne has still not had her final chemo treatment. Her oncologist, Dr. Rubin, is not willing to authorize it until her infection is over and she has surgery for the fistula. Jeffrey is saying to us that it is OK to have chemo and that he is unwilling to do surgery in her compromised state.

Since she has not had further chemo, her strength is coming back and she is feeling better every day. Meanwhile, we wait for the doctors to talk to each other and agree. We want to finish chemo - the sooner, the better, as my surgery date approaches. Joanne is eager to start detoxing and getting her health back.

We are dealing with a new challenge in our home on the Bay. We have two new four-legged creatures in our home - a rat and a baby rat (hopefully only one). They are quite brazen, scampering around the kitchen on the counters while I cook ( I cannot catch it!). OK, new news. One of our cats got the baby. One down. We'd like to trap it live and drive far up north and release it. I know that it's difficult to imagine a house with five cats and a live rat. But it's been co-habiting with us for almost a week now. We want it evicted. Any suggestions???

I am leaving you with a link if you want a good belly laugh. I don't know how to directly put the video on this blog, so click on the link if you want a delightful treat. Enjoy.

http://birdloversonly.blogspot.com/2007/09/may-i-have-this-dance.html

Good News

Joane spent most of the day with Dr. Grice in Seattle, enduring more cat scans and being poked and prodded. We have good news. He believes she has a low-grade, smoldering infection which has resulted in the "tunnel" internally. Basically, there will be no IP chemo - ever. We are at peace with that and have taken the position that we are continuing to be spirit-led in this whole process and that she is not supposed to have toxic chemicals infused into her belly. We believe she will heal faster and better without it. This is validated by Dr. Grice saying he has never seen this many problems with an IP port. Some relief in that arena.

It gets better. Dr. Grice believes she will heal from this infection WITHOUT surgery at this point. He will re-examine her in three weeks to see if that is true and we will go from there.
The IP port will be removed when she is stable and the infection cleared up.

Many thanks to Sharon Allen for driving Joanne down there and back, and to Kathleen for being with them during the M.D. visit. Joanne was well cared-for.

So, it looks like Joanne has only one more chemo infusion next week - and she is DONE!!
She is exhausted and weary, and so am I. We are celebrating!

A Rant

On this blustery, windy day, I am going to use this blog post to be equally blustery - to rant, yell, pound my fists against the cosmic wall. . .

We went to Madrona today to start Joanne's IP chemo - finally. Fortunately, the nurses started with an infusion of salt water, just in case. Very quickly Joanne noticed the fluid bubbling out of her vagina, flowing out as fast as it was going in. A major problem. We nurses all agreed she had a major fistula (tunnel) between her peritoneal cavity and her vagina.

I called Jeffrey right away. He doubts that it can be repaired without another abdominal surgery. He'll know after he examines her. Joanne is going down to see him in Seattle tomorrow. Bless Sharon Allen, who will be driving her down, as I am giving workshops all day tomorrow, starting at 8 am.

So, unless a miracle occurs and it heals on its own very quickly (ok, I know I believe in miracles, but right now it's hard to see the miracles amongst the fear, anger and pain), Joanne will NOT be getting the much needed IP chemo and will probably face another major surgery.

I can't imagine her enduring another surgery. I don't WANT to imagine her enduring another surgery. I want her to get the life-saving IP chemo. It looks like that won't happen. I'm angry at myself for having a thought several weeks ago that she might have a fistula, based on her symptoms, but not pushing it. I'm angry at Jeffrey for writing off the symptoms as "normal".
But mostly, I'm afraid for her.

I have the first of possibly many requests as we get closer to MY major surgery. I won't be able to clean our house after November 27th, so we need a good housecleaner real soon. Anyone have any good referrals???

Waiting Over

I'm posting this in Joanne's private room as she is eating solid "mystery" food that was just delivered. The surgery was very short - and very successful. Jeffrey took out the old kinked port and inserted a brand new one in a different area - all is working well and he is quite pleased.

We are not on the oncology floor this time, but the short-stay unit. It seems much more upbeat here! We will be leaving tomorrow morning, barring any unforeseen circumstances. We are both quite relieved. I will be sleeping, with the help of drugs, in a chair tonight - all out of cots.
It's only one night. Many thanks to all of you for your prayers, your poems, your support.
All is well.

Waiting again. . .

Since there is no cell phone coverage down here in the bowels of Virginia Mason, I will give an update now and later when there is news. We were told to be here at 2:00. We were. They took Joanne up to pre-op at 4:00 and now it is 5:40 and she still hasn't gone to the OR.

So, one of the gifts of this healing journey is that I am becoming a better "waiter". It's never been one of my strengths. Actually, I avoided waiting at all costs, except for a short stint as a waitress. A line? I move on.

I am proud to announce that I think I'm starting to surrender. After all, what's the alternative?
Resistance - and we all know that not only is it unattractive, but quite ineffective. It doesn't speed up anything except the adrenals and the heart rate.

Fortunately, I am equipped with books, I-Pod (and all those NPR podcasts) and my trusty lap top. Life is good - and I just wait. . .

He's Back!!!

Joanne's visit with Dr. Grice went very well today. He explained the "why" behind many of the symptoms she has been having and was very reassuring. We have a plan! Joanne and I will go back down to Virginia Mason on Tuesday for surgery that late afternoon - Dr. Grice is adding her on at the end of the day. He will attempt to fix the port and insert a new one. We will stay overnight in the hospital at least one day or longer if more extensive surgery is needed.

He encouraged her to take the narcotics for the pain - so she is currently pain free, sleepy and very relaxed! A huge thank you to Cindy Davis for driving Joanne while I worked. We are so glad that Jeffrey is back - he knows what to do and he cares.

Still Waiting.. .

I haven't updated since there is no new news - we are still waiting to see a surgeon. Meanwhile, Joanne continues to have more pain and is very weak. Life for her mostly revolves around our "Stressless" chair in the living room. Virginia Mason has clearly dropped the ball. Today Group Health double-booked Joanne for an appointment this Friday with Dr. Grice. It's his first day back from Brazil and we are so glad he is returning. It appears no other physician wants to deal with this peritoneal port issue.

Our dear friends Cindy and Sheila have just flown in from Houston, and Cindy will be able to take Joanne to Seattle on Friday, as I am giving an all-day workshop here in Bellingham. So, we may be spending the weekend in Seattle - or not. We have no idea what the next step will be.
Waiting for Grice. . .

Another speed bump

I wish I could say the first IP chemo went well today. Yesterday, Joanne got her IV Taxol and today she was supposed to get her first IP Cisplatinum. She was given all the initial IV drugs for nausea, etc. and then they discovered that her IP port was clogged - the fluid wouldn't go in.

So, it was off to the hospital for a dye study and then a cat scan. We were told to go home and wait for a decision. We are still waiting. It appears they are not sure what to do next.

So, a whole day at the office and all she got was sleepy! Maybe tomorrow.

Our friends Mara and Natalie are here from Nova Scotia to help us with the harvest and home repairs (Natalie can fix anything!). We're eliminating all our "tolerations" and putting up all the tomatoes, beans, beets. Now, if we could just run out and buy another freezer. . .

Here's another picture of our new children - never say I don't respond to your requests. . .

Chemo Update

We are NOT in Seattle today! After much dialogue and consultation, it has been decided to do the IP and systemic chemo at Madrona, in consultation with the folks down South. We found a nurse at Madrona who has some experience in IP chemo. This will alleviate much stress for us as neither of us are fans of traveling to Seattle twice a week (especially now that we will have a Trader Joe's up here!). The first IP chemo will be this Thursday - we will be at Madrona all day.
We are proceeding in faith that this will go smoothly and easily with minimal side effects. Joanne will be VERY filled with the Holy Spirit on Thursday!

Back in Bellingham

We are finally home - and Joanne is in our wonderful tempur-pedic bed. She received two units of blood yesterday and felt much stronger afterwards. Her temperature never rose above the "must have antibiotics" level, so we dodged that bullet.

We had several conferences with the new oncologist and our surgeon yesterday. They painted a very clear, and sometimes a bit frightening, picture of the chemotherapy road ahead. We have the first session a week from today, the 17th, in Seattle. They are definitely raising the bar in terms of chemo, with both IV and intraperitoneal chemo and a new drug. We are going ahead with the first session to see how Joanne tolerates it. She is in charge, and if the side-effects are too bad, she can cancel future treatments. I believe she will do fine - she is strong, resilient, and heals well. There are only three more cycles - six treatments total. We're starting to see the old proverbial light at the end of you know what.

Speaking of healing, even though this surgery was more extensive (larger incision, hysterectomy, etc.) Joanne is recovering much faster. She is actually much healthier this go-round, even after four cycles of chemo! We expect the healing to continue.

Bumps on the Road

Two challenges have arisen. One, Joanne is now quite anemic. She will be getting blood transfusions all day tomorrow - so obviously we are here until at least Monday. Also, it appears she may have an infection due to spikes of fever, so if this continues, we will need to start antibiotics this afternoon. Disappointing, especially since I am so eager to get us back home. I am so aware that a hospital is the WORST place to heal. Now I know this will sound weird to most of you, but I also get weary of eating all my meals out. I'd rather cook my own. Hopefully today Joanne will be able to start eating that great hospital "food" that appears on her tray.

We also got the sobering news today that Joanne's chemo protocol will involve TWO days in Seattle, six days apart every chemo cycle. One will involve an overnight stay in the hospital.
Since my work schedule really picks up in September and October, we will need to rally the troops for transportation help.

Apple did come through - gave me the new super-powerful I-Pod that came out this week!

Good News Details

I am writing this from our PRIVATE room - and the room is at the end, close to the lounge.
Why is that significant? Well, the WIFI (only available in a depressing lounge) leaks into our room!! We must be doing something right. . .

Joanne is deep in sleep and looks great. I knew it was good news when Dr. Grice came into the conference room smiling and beaming. The news is that he found only "dead" tumors and was able to remove them all. He didn't have to resect her colon, she didn't need any blood, and the surgery was only 1.5 hrs. He was able to put in a peritoneal port for her future chemo. There was only one small lymph node involvement. He was quite pleased with himself!

My team (Kathleen, Carol, Sharon and Peggy) and I cried this time too, but it was tears of joy.
One beloved member of the team was absent this go-round. Rev. Jenn was taking care of her partner, who left the hospital today after surgery for a shattered tibia.

Joanne is mercifully pain free again due to the epidural pain meds. She has NO nasogastric tube this time and already there are good rumblings in her GI tract. Clear liquids tonight!

We are determined there will be no infection this time and that the rest of her recovery will be easy and quick.

Only glitch so far is that my brand new I-Pod apparently died today as I was playing music for Joanne. Apple is seeing me tomorrow to hopefully replace it. So, we are on a roll! Thank you again for your support and prayers. It was palpable down here in Seattle.

Damn Good News!!!

Dr. Grice just left us. The news couldn't be better - we are all breathing and celebrating.
Details to follow - stay tuned. Thanks for your prayers - break out the champagne or carrot juice.

Count Down To Surgery #2

We found out today that Joanne is first case tomorrow. That means check-in at Virginia Mason at 5 am. Oh boy. It's going to be a short night! We will be staying with a friend of mine who lives about a 10 minute drive from the hospital (Thank you, Kathleen!).

Today I am working and Joanne is spending the day on clear liquids and a bowel prep (I'll leave the details of that to your vivid imaginations!) We leave Bellingham after my dinner tonight.

We are visualizing the following:

• A private room
• Dr. Grice is able to remove everything that shouldn't be there, and leave all that should be
• An easy and swift recovery so we can return home to our cat children and garden

We both believe that collective prayers and subjective support are powerful phenomena. Please join us in manifesting many miracles this week.

I will be posting every day during our stay at VM. Stay tuned. I am determined to have good news this time.

A rendezvous with Dr. Grice

Today we met with Dr. Grice, Joanne's surgeon, in Seattle for her pre-op visit. He explained what will happen in surgery on the 6th, giving us the best-case scenario and the worst case. We felt he was quite optimistic that he will be able to get out all the visible tumor.

We discussed the pros and cons of doing "double chemo" after surgery - both systemically and into her peritoneal cavity. The research supports doing this, and there are more side-effects.
Joanne and I agreed that we want to go this route, so if all goes as hoped, he will insert a peritoneal port at the time of surgery. Joanne will be a two-port gal! The plan is that chemo will start about a week or two after surgery, with the systemic chemo being done in B'ham, and the peritoneal being done in Seattle, where they are experienced with this.

We both enjoyed seeing Dr. Grice again. He is so kind, confident and engaging. He excels at being fully present. All the information we heard today was sobering. Joanne is not looking forward to another round of surgery, obviously. We are choosing to believe that this trip to Virginia Mason will be easier and the recovery faster.

So, she has a week of feeling good ahead of her, and plans to make the most of every minute.
Her two sisters are coming out from the East Coast on Thursday for a few days and we are very excited to spend time with them.

We're Going on a Field Trip!

Joanne had her fourth chemo yesterday and it went smoothly. This morning we take off for Sand Point, Idaho. My 83 year old mother and my 55 year old sister are both being ordained in the Church of Religious Science on Sunday. This same sister is also being married on Sunday! Even though it is really poor timing in terms of Joanne's chemo cycle, we wouldn't miss these events for anything.

The pull to the ministry is clearly a strong genetic trait in my family. Even I still have fantasies about going to Vancouver School of Theology or Seattle U. I'm really proud of my mother and sister - they worked hard for this. They are both my spiritual soul sisters.

We will enjoy Idaho for a few days and return to Bellingham on Thursday.

Summertime - Living is Easy

I realized it's been awhile since I posted, and I want to assure all of you, no news is good news.
The injections have worked very well and Joanne's white blood count is quite high at this moment. Other than a deep fatigue, she is doing well. Chemo is this Friday again.

My pleurisy has finally resolved and I can breathe deeply again! Since I have three free days and Joanne is doing well, I am leaving tomorrow morning for a three day solo kayak trip. I get to commune with the salt water and the seals. So feel free to call Joanne - she will probably want someone to talk to!

Many thanks to all the gardening divas who so graciously weeded and dug this week: Linda Diane, Shan, Kristi, Donna and Cindy. Your help was greatly appreciated.

Our summer has been very different this year, for obvious reasons. We have stayed close to our home, enjoying summer in Whatcom County and our gorgeous surroundings right here at Lummi Shore Road. We are grateful to Netflix, Village Books and our new children, Ginger and Fred for constant entertainment.

New Additions

We are proud to announce the arrival of two new children in our family - Ginger and Fred (or Freddie until he is larger!). They arrived as foster children from the Whatcom Humane Society two weeks ago, and they have decided they want to live here. They recognize that they hit the kittie jackpot. We are madly in love. Most importantly, they are a continual source of laughter and delight. There is nothing more healing than two purring fuzz balls on your lap - and they are rapidly becoming lap kittens. Our other three adult children are in various degrees of acceptance - from cautious delight to outright contempt. They will come around.

Joanne is handling the injections for her blood count well - no side effects. Unfortunately, her counts continue to be very low so she must avoid crowds and sources of infection.

Healing Garden

When I moved into this house in 1989 I planted a small patch of garden in front of the house. Between 1989 and now it became a victim of gross neglect with overgrown shrubs, morning glory vines, wild roses that refused to die and waist high weeds. A visual embarassment on the garden palate. I regret not having taken a picture of this mess.

So, when making my goals for 2007, transforming this plot was at the top of the list. I started the brutal job of digging up huge rootballs, etc. in early spring. In May I had most of the debris dug out, but had no idea what I was going to do with this patch of earth. Then Joanne was diagnosed. Now I had a project that a was a symbolic, life-affirming act. It would become a healing garden dedicated to my best friend. Now I could move forward.

The garden was finished last week and we like it. A final note of irony. While laying the crushed white rock, I literally impaled myself on a branch of the one conifer that was allowed to remain in the garden. It hurt like hell, but I recovered quickly. A week later I could barely breathe, walk or sit and the pain was an 8 on the old pain scale. A trip to the physician revealed pleurisy with effusion. Yes, I am curious why I needed to wound myself while working on a healing garden. I'll let you know when I know. . .

Living by numbers

The week after the Relay for Life, Joanne called the Madrona Oncology Clinic and the nurse asked her if she was a celebrity or a political candidate, since she had so many bags in her name!
Of course we all know that she IS a celebrity!

Today was the third chemo infusion. I'm aware that when I'm in the infusion room with Joanne I find myself curious about all the other people sitting in these plush recliners getting their toxic chemical bath. I want to know each person's story. Some are with loved ones, some are not. Some are bald, others have hair growing back. Some are becoming familiar faces. There is one commonality that unites us all - the faith that these chemicals are vanquishing the beast so that each may live a long, fulfilling life.

I'm learning that how Joanne is doing clinically is ascertained by numbers. The most crucial number is the CA125, the cancer marker. Fortunately, hers is dropping dramatically and is approaching the normal range. This is an important criteria for her next surgery, which is now scheduled for September 6th at Virginia Mason.

The other important numbers, checked weekly, are her blood counts - especially the white blood cells. The effects of the chemo are cumulative, so hers have dropped precariously in the last week. Fortunately, she rebounded enough today that she was able to get her chemo. It also means she will need to get three painful injections next week of a drug that will stimulate her bone marrow to produce more cells. When her cells are low she is very susceptible to infection. One of the side-effects of this drug is bone pain, so we are holding the vision that she will sail through this next treatment.

Following the orders of the oncologist to do something fun after treatment, Joanne went to lunch at Anthony's with a friend and then to a yarn sale where she did major shopping.

A Juicy trip

Currently we are in the part of the chemo rotation where Joanne feels quite good, although her white blood cell count is very low, making her susceptible to infection. So we decided to hitch up the old tent trailer and take a summer camping "vacation" for three days to San Juan island. I was going to bike voraciously and Joanne was going to drive around, hoping to meet up and share our favorite places together. Mother nature had other plans. Thursday was beautiful. We strolled through the Westcott Sculpture Garden at Roche Harbor.

Friday it rained all day. In a moment of misplaced optimism, I took off on my bike and managed to get in 13 miles before calling it quits (literally calling Joanne on my cell - "Come get me"!) I was oozing water from my bike shoes and soaked to the skin. It wasn't enjoyable anymore. I'm getting smarter in my old age - most of the time I know when it's OK to quit. Friday night we had an enjoyable dinner with friends, and Saturday it rained again. With a worsening forecast, we headed home.

The best part of this trip was that Cancer took a back seat. We rarely gave it much thought or conversation. That is very unusual these days. Other than Joanne's not biking, it felt like a normal summer camping trip to S. J. Island. Normalcy feels delightful. It's easier to focus on Joanne's healing and the concept of her being well again at some point.

Relay for Life

Yesterday was the first time I attended the Relay for Life where the cancer beast has hit so close to home. We walked the survivor's lap with other members of our church family (caregivers were allowed also!) We then went out to dinner some of these survivors . Joanne napped at a friend's house, then we returned at 11:00 for the ceremony and walked amongst the illuminated luminarias. Joanne had over 100 of them - a wave of "Joanne Kotjan" bags. We were both very moved. Thank you to all who donated bags - and especially to Peggie Moore for expediting so many donations through your store.

Every year I find this event to be an emotional roller coaster. There are so many names that I recognize on the bags. This disease is so prevalent and exacts such a huge toll.

Joanne had a phone conference with her surgeon yesterday. They have decided on a tentative date for surgery the end of the first week of September. So she will have four chemo treatments instead of three before the next surgery. She wanted more time to recuperate from the first surgery.

Today we experienced a sense of normalcy in our lives. Joanne has recovered from the post-chemo pain and weakness and actually felt quite energized. I went on a long bike ride and Joanne visited nurseries - we both met up in Lynden for raspberries and ice cream! Life is good.

Lights for Healing

This Friday is the Cancer Relay for Life in Bellingham. Those of you who have attended and/or supported this event know that there are many luminarias for those who have survived cancer, are fighting cancer or who have died from cancer. It's quite a moving, beautiful sight when they are all lit at night during the Ceremony of Hope.

Joanne now is a member of two categories: survivor and fighter. We are focusing right now on the later (wish the category was "healing" instead of "fighting").

Anyone can donate a luminaria to honor a particular person - it is $5.00 per luminaria. I envision hundreds of these for Joanne!

This Wednesday, July 11th, Peggy Moore is opening her store, Yak Magic, to have a fundraiser for luminarias for Joanne. From 6 PM on, there will be wine and cheese, and 20% of all jacket sales will go towards luminarias. She will also have lots of bags for people to personally decorate. The store will actually be open from 2 PM, so you can come in anytime during the afternoon to buy a jacket or simply make a donation. If you want wine and cheese, wait until 6!
The money donated goes to the American Cancer Society.

Parties at Yak Magic are always high energy and lots of fun (besides the gorgeous jackets!) The store is located at 1114 Finnegan Way in Fairhaven (that sliver of a street between 11th and 12th). If you want to talk to Peggy, you can call at 715-3573.

Joanne and I will be walking the survivors lap with other members of our church. We will be staying at the event as long as her energy holds out. Maybe we will see you there. . .

Bald is Bold

Today is chemo day (infusion of the holy spirit), so Joanne and I are camped out at Madrona for five hours and had fun coming up with the top ten best things about being bald this summer:

#10 Passing by a mirror is a totally entertaining experience.
#9 Bald is bold. You get big smiles and thumbs up just walking down the street.
#8 The ventilation is great, especially when the thermometer passes 80’.
#7 No worries about earrings being hidden by flowing locks. And the bigger the earrings, the better.
#6 You have instant community with others in "the club".
#5 In Paris, bald is totally “in”, so this is a great excuse to go to Europe.
#4 It’s fun to wear hats and scarves you forgot you had.
#3 Big savings on hair products, hair cuts and coloring.
#2 You have a great palette for head art.
#1 You never have a bad hair day.

Anybody out there have anything else to add to the list?

Happy Interdependence Day

"The love of one's country is a splendid thing. But why should love stop at the border?"
Pablo Casals

"To him in whom love dwells, the whole world is but one family." Buddha

With the 4th rapidly approaching and already many illegal fireworks punctuating the silence out here on the reservation, I again face the fact that this is NOT one of my favorite holidays! I would like to create some meaning out of this day, and the Network of Spiritual Progressives have come to my rescue. They are encouraging us to celebrate July 4th as Inter-Dependence Day. The point is to take a traditional ultra nationalist holiday with its theme of "bombs bursting in air," and American triumphalism, and reshape it in 2 ways:

• To affirm all the good in America, particularly the struggles of ordinary citizens that led to the expansion of democratic rights and civil liberties throughout the past two hundred and thirty one years.

• To affirm that in the 21st century there is no such thing as "independence" without affirming and thinking in terms of our inter-dependence with all other people on the planet, and with the planet itself.

They suggest that we start talking to our family members about ways we might commemorate how our well- being, as a people, is linked to the well- being of everyone on the planet. It could be a great topic of conversation around the picnic table.

Since Joanne was diagnosed, I am profoundly in touch with our own interdependence on this journey. It truly takes a village to heal a cancer patient.
We both are full of gratitude to all of you. Let the fireworks begin.

Cancer Markers Falling

More good news from the physician: Joanne's Ca125 has fallen dramatically! This means her tumors are responding to the chemo. Yes!!! So, when the cancer marker has approached normal, we can have the second surgery - hopefully end of August.

A huge thank-you to Linda Lee for shaving Joanne's head on Sunday. The hair coming out in handfuls was too traumatic. A picture will be posted soon.

Joanne's appetite is voracious. She is making up her calorie deficit. Today she has more energy than she has had in six weeks.

I will post again on the 4th of July with a special "Interdependence Day" musing.

We are holding the vision for two new kitties joining our family very soon.

An Omen

I just took this picture and feel compelled to share it with all of you. Rainbows occur fairly frequently out here, and never fail to take my breath away. I am choosing to view this one as a metaphysical high-five. We saw it while eating wild salmon, broccoli from our garden and fresh local strawberries. Life is good.

A Celebratory Day!

Toot the horns, wave the flags, and throw the confetti - it's celebration time! Both of Joanne's blood counts are way up - her bone marrow has rebounded with gusto! So, for the time being, we have staved off the nasty drugs that kick start the bone marrow. Her next chemo will now be on schedule - next Friday. Today is the last day of the antibiotic for the infection. Her appetite is great. Only irritating symptom is the weakness and fatigue, a natural result of major surgery, cancer and an infection. Her hair is starting to come out, so the ritual shaving will be very soon.

We had a very good appointment with the naturopath this morning. She validated all the natural supports we are using to decrease the side effects of the chemo. We like her.

The next big milestone will be the appointment on Monday with Dr. Rubin when we find out the results of the cancer marker and know if the tumors are responding to the chemo. Stay tuned and make it a wonderful weekend.

Tribute to Bennie

Another one-way journey to the vet's - another tearful, painful good-bye. After so many good-byes to pets, it doesn't get any easier, even when it is the right decision. Such is the price for loving.

Ben was special - he was the first kitten Joanne and I adopted together when she moved in 14 years ago. He was a battle-scarred protector, lover, mother/father to many siblings, and master cuddler.

Right now, it feels like my heart cannot hold any more sorrow. So, it's time for some dancing, laughing and bike riding. Joanne and I continue to live one day at a time.

Beautiful, but rough day

Today Joanne went in for blood work and got the bad news that her white and red blood cell counts are way down. We didn't expect this to happen until she had been through several rounds of chemo. The M.D. wanted to start some strong drugs that have unpleasant side effects. We have decided to wait until Friday. We have a naturopath appointment that day and will then have another blood draw and make a decision.

We are both discouraged. The context of our day didn't help. Bennie, our 14 year old cat is dying from end-stage kidney disease and we will probably be euthanizing him on Wednesday. It's so painful to see him suffer. We euthanized another cat just a few months ago who had cancer. Looks like it's time to adopt some kittens. Also, today I opened the cabinet below the sink and discovered pools of water and coffee grounds - major plumbing problem to be fixed tomorrow!

So, I am requesting that all of you powerful visualizers see Joanne's bone marrow as a bustling factory working overtime to produce lots of cells. Our vision is that cell counts are on the rise.

Turning Point

Joanne has finally turned the corner in terms of her healing. We discovered on Friday that she had become very dehydrated from the GI infection, so she received IV fluids on Friday, Saturday and today. She now feels so much stronger and finally has an appetite! This has been a very sucky weight loss program.

I finished leading Reset for Excellence tonight, and Joanne requested that I bring home a Papa Murphy's veggie pizza. I have never been so excited about bringing home a take and bake pizza - you'd think I was transporting the Hope diamond.

Many thanks to Jerry Horner, Cindy Brooks and Rev. Jenn for driving Joanne to the hospital on Friday and Saturday while I was in Reset. Today she actually drove herself - a big milestone! So, we're looking forward to two weeks of increasing strength before her next chemo treatment.

Many Trucks and Naturopaths

Wow, I didn't realize we knew so many people with trucks. I promise I will never even consider renting in the future. We're surrounded by friends who truck! I put the debris - a mountain of it - in the front yard. Our neighbor came by in his truck and whisked it away. Actually, if we put ANYTHING in the front yard out here, it will ultimately be whisked away. . .

Thanks for all the input about naturopaths - it appears we also have an abundance of those in this community. We have an appointment next week with a Dr. James in Ferndale who specializes in oncology.

Joanne is going through a particularly rough period. We found out today that she has an infection in her GI tract, and that is probably contributing to her severe fatigue and lack of appetite. She starts on antibiotics tomorrow and is really looking forward to having more energy in the near future. Fortunately, the bone pain is gone.

I, on the other hand, got in a 50 mile bike ride today. That's a huge stress reducer for me and I feel quite energized. It's a good thing, because Reset for Excellence starts on Thursday.

Gardening angels

Joanne is now dealing with some of the yucky fall-out of chemo (no, she still has her hair - for one more month). It's been nausea and fatigue and today is deep bone pain, due to steroid withdrawal. My challenge is the fine dance between knowing how important nutrition is (some of you know I'm a nutrition nazi at times!) and her lack of appetite. The only thing that really appeals to her right now is ice cream - I surrender!

Yesterday, under cloudy skies, seven gardening angels came out to do a blitz cleaning up of the back border of our property. As someone who traditionally would rather pull her fingernails out than ask for help, I must say that yesterday's experience was delightful! We accomplished so much in a short time and had fun doing it - I could get hooked on this. Many, many thanks to Rev. Jenn, Ellen, Marie and Mary Ellen, Kristen, Sharon and Bruce. Next step is to rent a truck and take all the debris to it's final resting ground.

Anyone know a good naturopath in town who works with cancer patients???

Smooth Sailing

Joanne's first chemo session went super smoothly. We were in the infusion room at Madrona for 5 hours. The only casualty was when the IVAC machine and IV pole fell on my face (I was sitting in a chair). First aid was immediately rendered, and the bruising should fade in a few days!

The nurses were great, they have snacks in the kitchen, the recliner was super comfy, and they have internet hookups - what more could any couple want. I blessed both bags of chemo before they were infused - we visualized the liquid as the holy spirit cursing through her veins, cleansing her body of any ill cells.

Thank you, Etta, for the treatment buddy. He/she is yet to be christened - we'll let you know.
Thank you, everyone, for your supporting vibes. While I was praying at the beginning of chemo I saw an image of angels surrounding and supporting Joanne's body. Cool.

Chemo Orientation

I just want to reassure everyone who visits the blog daily - no news means I was just taking a break from posting this blog - nothing else!

Today we had a 2 hour appointment at Madrona with Dr. Rubin and the chemo nurses. They were able to squeeze us in for the first chemo treatment this Friday. It will be a five hour session, receiving two drugs.

We are both quite sobered, and sad, about the journey ahead. Joanne has been through chemo before and is accessing memories of that experience. I was an oncology nurse for years so I know what we're facing. We both feel better emotionally when we focus on the present and what is right in front of us. When our thoughts wander to the road ahead - the rest of this year with another major surgery and then more chemo, it feels overwhelming and scary. I know the physician has to tell us all the worse case scenarios, but in many ways, it is not helpful. So, it's one day at a time and the kite strings we are holding onto are Joanne's amazing ability to heal and the belief that she will sail through the chemo process. We are pointing our boat downstream and going with the flow. . .

Narcotics Be Gone

Joanne had a great day. A whole day with only Ibuprofen. We realized it was the narcotic pain med that was causing the nausea and other discomfort. Today she ate food, went for several walks in the garden and generally felt much better. In the picture she is wearing the prayer shawl that Sharon Allen gave her today. Sharon, as part of the Prayer Shawl Ministry group at our church, choreographed this project. Many of us knit one or more prayerful rows in the shawl that will give her protection and comfort in the months to come. Thank you to all who participated. There is a little angel sewn into the shawl and the following is the note attached:

"This shawl was created for you with love and prayers,
May God who formed your being,
Who knit you together in your mothers womb,
Who gave you the breath of life,
Renew you this day and give you hope to sustain you.

May this prayer shawl be a sign of Christ's healing presence.
May it warm you when you are weary;
May it surround you with comfort to ease your suffering;
May it encircle you with caring when you are in pain.

Wrap yourself in this shawl of comfort and pray. . .
Amen

Home Sweet Home

We had an uneventful journey home with Joanne stretched out in the front passenger seat asleep most of the trip. I set up her office downstairs as the "Recovery room" where she has a reclining chair and a bed so she can see out the door to the courtyard garden. Mostly, it has a door that will keep the cats from coming in and jumping on her painful lap! Her biggest challenge today is nausea and lack of appetite. We're hoping it's from the strong pain meds, and we're working to transition to milder drugs. I've heard all the horror stories about loved ones over-encouraging patients to eat, and I'm afraid I've become one of them! I want her to get some nourishment before she starts chemo next week.

We really, really appreciate all the offers of support, like meals, gardening, etc. In terms of meals, both of us are living with nausea right now (empathy pains?), so very little cooking is required in this household, and I can easily handle it. We have a very challenging road ahead when she starts chemo and then goes back for major surgery again, and then real intensive chemo, so I suspect we will welcome gifts of meals later on. I haven't surveyed the property yet other than my vegetable garden (looks good!) but I understand that if you want to help me garden anytime in the next two months, you can contact me or Sue Hindman at sch@fidalgo.net.

Jerry Horner :) has graciously volunteered to bike my legs off. . Anyone else that wants to join in on that fun can email him at: jerryhorner@windermere.com.

Thank you Linda, Taylor and Shelly for your generous gifts of housesitting during our stay in Seattle.

We have our first appointment with the oncologist Dr. Reuben next Tuesday and will hopefully start chemo right after that. The healing continues with reiki, spiritual mind treatments, prayers, guided visualizations, laughter and music.

Free at Last!

Joanne is now free of her IV, foley catheter, and epidural catheter. It's great to move about the room without pushing all those machines. Her first "real food" was a USANA nutrimeal, of course! I don't consider beef broth and jello "real food". She now will hopefully slowly upgrade to Trader Joe's organic yogurt, bananas and soup (I went on a field trip). Bad news about losing the epidural - she now feels pain and was quite surprised to really see, and feel, the extent of her incision which is stem to stern. That is REALLY BIG on a little person. Our next challenge is to adjust and tolerate the oral pain meds.

Here's the best news of all: we go home tomorrow!

We Did Carpe the Dang Diem

Thanks, Sharon, for that expression - it really sums up today. Joanne took three (3) walks down the oncology corridor. Yes, the mighty wind did roar and she had some explosions of all those clear liquids! So, we're hoping tomorrow she can start on full liquids. Going home is not a possibility until at least Wed or Thurs. This is an exercise in patience. Joanne has much of this - me, not so much. So, many thanks for all that visualization and those wonderful farting comments. I think we all needed the comic relief. . . OK, you powerful visualizers: see Joanne with no more tubes or catheters, taking oral pain meds and us driving carefully North on I-5 to our home on the Bay. Home, ET, Home. ..

Speed Bump

We've hit a slight speed bump on the road to healing. Joanne's GI tract is not willing to "wake up". So, it looks like it will be Tuesday, at the earliest, that we get to leave here. So we need everyone to visualize Joanne "passing gas" in a big way - and often! I must admit that I am also visualizing a good rain dump so our gardens get a sufficient drink. It's hard to be away from our home this long.

This morning I went to church at the Plymouth UCC church which is only three blocks away in hope of some spiritual nourishment. I had lunch today with an RN on the floor who recognized me as one of her instructors at the UW back in 1980 - some people have amazing memories!

Tonight I am staying with a friend who lives close to here - I am in desperate need of some renewing sleep. I think this whole journey will look a bit brighter when I am not so fatigued.

Jello at Last!

Today we've seen real progress in Joanne's healing from surgery. She had that pesky nasogastric tube removed and is finally able to feast on broth, tea, and jello. Actually, jello never tasted this good to her! A journey of a 1000 miles begins with a few steps and three times today she stood and took about five steps. She's in good spirits and still mostly pain-free due to the wonderful epidural anesthesia. In the picture she is holding the button that dispenses pain-relieving meds - she's in charge and she likes that!

We are focused on going home - aiming for Monday. Hold the vision.

I read your comments to Joanne every day. Your thoughts, prayers, poems and eloquent posts are so supportive to both of us - we feel cradled by angel wings. Thank you.

Just Happenings: Spirit Walking and Spirit Talking

Those of you who know me know that I don't believe in luck, coincidence or fate. It's all about intention and attraction. So yesterday and today I had several encounters with spirit walking and talking which I KNOW weren't just serendipity. I had lunch in the hospital cafeteria yesterday with a friend and pastor of a UCC church in Magnolia who "just happened" to be at Virginia Mason to visit someone - we ran into each in the cafeteria. I had a brief encounter in an elevator with a friend I haven't seen in years who "just happened" to be at VM and who had a friend whose cancer was cured by Jeffrey Grice and who validated we had a great physician.

Today I went out for a walk, seeking a green patch of nature, and happened upon Seattle University. I was walking through the gate when I saw in the distance a friend, Jen Sandoval, running toward me with a healing hug. She "just happened" to look out the window in her dorm and see me coming onto campus and ran down the stairs to catch me in time. We walked and talked and I got a personal tour of campus.

I am writing this post from home tonight because I will be facilitating a retreat tomorrow morning in Bellingham that was scheduled way before our lives changed so dramatically. On
the drive north I was cruising radio stations to try and stay awake. I just happened upon the "Delilah Show" (sp?). I normally find her quite grating and avoid the station, but tonight I felt compelled to stop the scanner. I immediately heard a caller say that two years ago she was diagnosed with ovarian cancer and given two months to live. She was calling in to request a song celebrating her great health and vitality now. Coincidence? I don't think so. Spirit walking and talking today. We are well.

Joanne's tucked In

This is a difficult entry to make. Joanne came back to her room about 8 pm tonight. The news from the surgeon was NOT what we wanted to hear. The cancer was widespread and he could not remove it all. The next step is chemo that will shrink the remaining cancer so it can be removed later. We have a lot of work to do is this healing process.

I felt cradled all day by the support of my "team" who waited a very long time in a very hot waiting area. We were both supported by the love and thoughts of all of you. Joanne is not in pain due to the wonderful technology of epidurals. She is resting comfortably. Please hold us both in your prayers. Oh yes, we did score a private room, but unfortunately they ran out of cots for family! So, it will be a long night in a chair - and fortunately, I'm exhausted.

Holding Vigil

Joanne walked herself to surgery at 2:20 pm. Yes, it's true. Joanne and five of us were sitting in the "Surgery Waiting Area", aka twilight zone, at Virginia Mason. It's very crowded with other waiters. They came for Joanne and I was not allowed to accompany her to the OR. I attempted to pull the "nurse card" and Jennifer Yocum, our pastor, pulled the "pastor card", all to no avail.
It was not how I fantasized saying good bye to my sweetie. It was the way it was. So, I'm surrounded right now by dear friends, Carol Peringer, Sharon Allen, Kathleen Carie and Jennifer Yocum. We presented Joanne with a half-finished prayer shawl and several other gifts from dear friends. Now we wait - it will probably be a 2.5 hr surgery. We wait, pray, and laugh together.
Stay tuned.

Count-down to Blessed Surgery

"...the powerful, ceaseless, thunderous waves of love and healing are in and it's high tide." Marla Morrow

Marla's statement provides me a wonderful visual image that is an anchor during the hard moments. Thank you, Marla.

We've had a rich few days. We laughed at the Mt. Baker's production of "Hairspray" (thank you, Bob and Karen for the tickets). We laughed even harder at the Cody River Show at the Idiom Theatre. Most of our precious time has been spent in our massive garden, frantically planting, weeding and watering, trying to catch up. We've called a halt to the war on horsetails - they can have their way with us and we surrender.

Tomorrow (Wednesday), Joanne begins her all-day "prep" for surgery, which is a major cleansing of her body so that the surgeon has a clean field in which to work his magic. I've reframed this purging as a purification process to allow more space for light and healing, and to discharge the cancer cells that have already surrendered their lives.

There is a Karen Drucker song that Joanne and I have been singing all week:

"Love fills every cell in my body,
Every cell is alive with love.
I relax into the healing process,
I allow spirit to do what it does."

It is an understatement to admit that relaxing is not my forte. Joanne, however, is a wonderful teacher in the art of relaxing and receiving. I do frantic strategizing, she does calm. We are both eager for the surgery so she will be more comfortable and we know with what we are dealing.

My next post will be from our private room (hold the vision!) at Virginia Mason on Thursday - the sacrament of surgery will be around 2:00 pm. Thank you for all your support.

When you post your comments, please sign your first and last name so we can visualize you
as we read them.

The Roller Coaster Ride Begins - All Aboard

Joanne had not been feeling well for several months, so tests were ordered right after the amazing 60th birthday party for me that she planned and hosted. The "phone call" came
on a Friday (May 18th) of a five day residential workshop that I was facilitating in Skagit
County. The dreaded CA125 blood test was very high and the tentative diagnosis of ovarian
cancer was declared. Now getting this news in the middle of a workshop via phone is not ideal, but then again, I don't know what scenario would be. The good news was that I had twenty
participants to focus on. The bad news was lying in my lousy bed at night, alone, and encountering the dark night of the soul when my brain felt out of control with fear. It really sucks to be a nurse. . .

After many phone calls and the pulling of strings by physician friends, we scored an appointment with a GYN oncologist at Group Health Central on Wednesday, May 23rd. Unfortunately, I was scheduled to give a luncheon talk to 60 folks during her appointment. Again, separated by my work. . .So, Kathleen Carie, a very dear friend, agreed to meet Joanne in Seattle and take notes during the appointment. The physician is Dr. Jeffrey Grice and Joanne really likes him - hallelujah!! He scheduled surgery for May 31st at Virginia Mason
Hospital in Seattle. She will be there about 3 days, and then will probably start chemo
two weeks later.

So, Joanne basically has 5 1/2 days of feeling relatively energetic before the surgery. We decided we would use this time to have fun, laugh much (I need to make some changes to that Netflix que!), and focus on healing. We canceled a camping trip to Orcas Island because Joanne wants to sleep in a comfortable bed!

The healing process has already begun and we have attracted a great team. Thank you, Betsy and Jennifer, for your profound work. Thank you, Cathy, for a beautiful Spiritual Prayer Treatment for Healing which we carry around with us at all times. Thank you, Laura, for reminding me that I am not always right! Thank you, Carol, for researching easy blog sites - even I can do this one. Thank you to my mom and sister (many of you met them at my party and experienced their powerful energy) for your prayer treatments 24/7. Thank you Marie and Mary Ellen for staying with Joanne while I was leading the workshop. Thank you, Sharon, for choreographing the prayer shawl project. Thanks to all of you for sending so much love and light our way - we are so blessed.

Both Joanne and I believe that miracles are commonplace and we invite you to join us in that vision. We know that we are on a roller coaster ride, and we are hanging on to each other and our faith.

I will make another post close to May 31. Stay tuned.