Garden Meditation
by Rev. Max Coots

Let us give thanks for a bounty of people.

For children who are our second planting, and though they grow like weeds and the wind too soon blows them away, may they forgive us our cultivation and fondly remember where their roots are.

Let us give thanks;

For generous friends…with hearts…and smiles as bright as their blossoms;

For feisty friends, as tart as apples;

For continuous friends, who, like scallions and cucumbers, keep reminding us that we’ve had them;

For crotchety friends, sour as rhubarb and as indestructible;

For handsome friends, who are as gorgeous as eggplants and as elegant as a row of corn, and the others, as plain as potatoes and so good for you;

For funny friends, who are as silly as Brussels sprouts and as amusing as Jerusalem artichokes;

And serious friends as unpretentious as cabbages, as subtle as summer squash, as persistent as parsley, as delightful as dill, as endless as zucchini and who, like parsnips, can be counted on to see you through the winter;

For old friends, nodding like sunflowers in the evening-time, and young friends coming on as fast as radishes;

For loving friends, who wind around us like tendrils and hold us, despite our blights, wilts and witherings;

And finally, for those friends now gone, like gardens past that have been harvested, but who fed us in their times that we might have life thereafter.

For all these we give thanks.

And joy of joys—some time spent recently with my granddaughters on Abrienne’s third birthday last month at the apple orchard farm.

I will be writing again soon with a medical update.

September 26, 2019

A note from Angela

Mom is home from the hospital and feeling much better. They have stopped all her chemo treatments for the time being. The results of her bone marrow biopsy show that the Venclexta worked, she has less than 1% blasts. This means her cancer is in “remission”, however it is only a temporary remission. No one knows when it will return. Furthermore, she also has no remaining healthy stem cells, which means she is for now transfusion dependent. The Venclexta may have worked too well and killed everything. She will get her blood counts checked three times a week and receive transfusions as needed. She will remain at high risk for infection and as we move into the cold and flu season, this will garner a need for more strict precautions

Her doctor wants her to go to transplant now. She is not ready to go to transplant yet. She still has some unaddressed concerns and is having a re-consult with Dr. Deeg (up at SCC) before moving forward. Some people’s healthy cells can recover, and she would like to wait 6 weeks to give her body a break. This doesn’t mean she would be in “better shape” in 6 weeks to go to transplant, but rather give her 6 more weeks of quality living and a chance to get some additional information and answers she wants before proceeding. While a transplant is still the only “cure” for her cancer, it still comes with some risk and serious side effects.

Thank you to everyone for your loving care and support. Mom continues to be optimistic, courageous and we just love her so much!

September 23, 2019

A note from Angela

Hello friends,

Well this last week has been a hard one on Mom. On Wednesday 9/18 she started her 10th round of Vidaza (IV chemo) cycle, had her third bone marrow biopsy, and another platelet transfusion. She has been developing on-going nausea for almost a month now and when she started her Vidaza, her level of nausea greatly increased.

On Saturday 9/21, her 4th day of Vidaza she continued to feel more sick but Mom being Mom, was carrying on. Her team at OHSU clinic decided to send her via ambulance to the OHSU ER as they were concerned about a potential mouth infection. With ZERO neutrophils, she is severely immunocompromised and infection becomes the number one concern.

At this point in time, it is not at all clear what is going on with her cancer. Her blood counts improved greatly two months ago and there was a beautiful window where we all believed her new oral chemo was working to reduce her cancer (in conjunction with Vidaza). The tentative plan at that time was to continue with that regimen for 6’ish months and then look at doing a transplant .This would give her more time with a good quality of life as well as more time to reduce her disease burden (allow the cancer to go into remission).

However, the improvement was short-lived and her blood counts have plummeted lower than they’ve ever been. They continue to drop every few days. We will be reviewing the results of the bone marrow biopsy with her oncologist on 9/25 for clues as to next steps and will update this site after that meeting and once some decisions are made.

After many hours in ER, an attempt was made by an ENT doctor to aspirate a lump in her neck. She was then moved to the BMT (bone marrow transplant) unit at OHSU where she remains for the time being, receiving IV antibiotics and is under close watch by a skilled team. Surgery is not necessary and Mom will likely be released within the next 24 hours.

Thanks to Aunt Teresa and CeCe who provided primary care for Mom during this time. She has also enjoyed family members’ visits as well as frequent phone conversations with her children and granddaughters. Our good friend Dick will get Mom settled in at home when she is released and we will all be with her at home for the next little while providing extra TLC. Mom has been a good sport and remains in good spirits despite the bumps this past week. As she often reminds us, she has much to be grateful for.

She will be in touch soon.

August 21, 2019

A note from Kathy

Hello friends,

I just started round 9 of chemo this morning and I have a window of time this afternoon to reflect on some things…where I’m at…how am I spending my time…what matters most to me…is there something I want to be doing differently? In sitting quietly, I’m aware once again of how grateful I am to have this time. This summer has afforded me the chance to be with family and friends, stay engaged in my work and most recently to be more active in play with hikes up at the mountain and walks in town.

I’m sad to be letting go of my cabin after 15 years of having a place that I love. It has been a haven for me of rest, relaxation and being in nature. I feel my body relax every time I head up to the mountain. Still, since I’m not certain what lies ahead, this move seems to be a way for me to simplify by continuing to downsize and let go of things—even the precious stuff.

This morning I had a new (new to OHSU) traveling nurse. As she did her thing and was in my room several times, I continued talking with one of my former students—a person who is going through her own life changes and difficult situations. In the face of these intense challenges, she reached out to talk about acceptance—how to let go of resistance and accept what is. She knows that I’ve had practice with that, first with losing Grace followed by Angela’s long and difficult recovery. And most recently with my own diagnosis of MDS. It was touching to be able to listen and to share with my friend. We talked about the “right here, right now” practice I’ve been attempting to live with more consistency day by day. This practice of being present in each moment has made my life more than just manageable—I’ve experienced much joy and an inner peace that I’m ever so grateful for.

After I hung up from my conversation the nurse, Amanda, wanted to know… How did you learn to listen like that? How do you find the right words? Is this something anyone can learn? How do you stay so calm? And finally….”is it okay if I ask to be your nurse again later in the week?” And I share this as a reminder for all of us. Isn’t it true that we enjoy being around one another when we can be present in each moment…really present rather than trying to find what to say next? Or trying to “fix” someone. Something powerful happens when we are together in that space of unconditionality, of acceptance. And it doesn’t necessarily require a specific kind of training to listen but maybe a desire and willingness to “be with” one another authentically.

I’m forever grateful to my teacher, Marshall Rosenberg, who shared the magic of Compassionate Communication generously with so many of us from around the world. We need this compassionate understanding especially at this time…for ourselves and for others. I notice in my “work” each day how hungry we are to be truly seen and understood.

A Birthday party…

My thanks to Angela for pulling together a lovely birthday celebration in honor of my 65th! The photo book is a real treasure and the “mystic” piece of art is in just the right spot on my wall. I appreciate Diana and Lewis being willing to host; Margaret and Tony taking the initiative to facilitate what turned out to be a loving and intimate sharing circle; and family and friends who contributed yummy food and lots of love. Your presence and support remains deeply meaningful to me.

A medical update… and some good news!

My most recent numbers reflect some success with the oral chemo (Venetoclax) combined with the IV chemo (Vidaza). While the chemo itself is not a cure for MDS, it is serving as a much longed-for bridge. I’m all about having as much quality time as possible. My oncologist was pleasantly surprised as he hadn’t expected these results. With the increase in my RBC and platelets, I’m able to remain active and do the things that I love and be with the people I love. This is the very first time since last December that my cell counts have gone up. If you’re into numbers (as I’ve come to be) here they are:

There is confusion and some concern about the WBC and Neutrophil counts as they are now lower than they’ve been. We will know quite a lot more after a bone marrow biopsy in September. They will be able to look at and assess the blast counts and track changes, if any, to the gene mutations.

Right here, right now…all is well.

In gratitude for life and love,
Kathy

July 26, 2019

A note from Kathy

I’m taking time out on my birthday today for a few moments of reflection.

This is a special day and as some of you know, it’s a mix of celebration and tender grief. Grace died on this day three years ago. My second-born granddaughter—beautiful and extremely healthy through 39 hours of labor. I spent time this morning remembering the very sparse periods of time I had with her and words can’t begin to convey the loss and heartache. Going from the highest of highs to the lowest of lows in a space of a few hours has been hard on all of us and touched our family in a way that we have not experienced—before or since. The saving grace is that I continue to feel her in my heart. And certainly her mom and dad do!
I’m grateful to be able to be together this evening with my immediate family. Angela and Scott are on their way over from Bend and Nicole is making a birthday dinner for us. Scarlett and Abrienne are a joy to be with and I’m glad to have them so close. Their 6 and 2-year old energy nurtures me in ways that nothing else can.

I received an early birthday gift on Wednesday with cell count numbers that showed a marked increase.

I just got my labs back and it looks like the Venetoclax is working! While chemo is no cure–if this bridge is working, it at least gives me the quality time I’ve been wanting. The numbers:

Even though the WBC and neutrophils are still very low, they are coming up.

The platelets are amazing and Maziarz thought last week it was a lab error. 5 weeks ago, my platelets were at 9 and I required a transfusion. Now they are 299. So they went from 9 to 22 to 33 to 158 to 299. A very dramatic increase. They want to do a biopsy on 8/15. I may push it back to 8/21.

Today is my 9th round of chemo and it is expected that all my numbers will drop again as is typical.

This is good news for the first time since last December because my numbers never have gone up. Not once. I’ve been reminded of course, even this morning, that there is no cure for MDS except transplant. The docs want to be sure I know this. Still, as Angela said back in December, “for today we dance!” Love to each of you ?”

July 11, 2019
A note from Kathy

Hello friends!

Once again, I look at this date and realize it has been more than six weeks since I last checked in. I’m enjoying a quiet afternoon in my home office looking out on a backyard that has always been a restful and rejuvenating space for me. I feel gratitude for my friends—Dick, CeCe and Kim who have kept it beautiful for me as digging in the dirt is not recommended for a compromised immune system. Sadly, fungi is a no-no. Listening to the birds in the birdbaths and a taste of July sun coming down through the trees is enjoyable.

June was the absolute best kind of busy with lots of family time. Anthony celebrated his birthday with family on June 3rd over in Bend where we stayed at the Meadowbrook house and had four lovely days of picnicking, swimming, paddle-boarding, eating great food, and my favorite—doing all of that while being with Scarlett and Abrieanne. Angela and Scott were able to take us to a couple of special places and my newest grand dog Finn, had his first time of playing in the water. We all enjoyed ourselves and are so glad to have a place there in the same neighborhood as Angela and Scott.

With only a few days of rest back in Portland we headed to the Oregon Coast where Angela found a great place for family to stay at Arch Cape. Fortunately, we were able to make it an extended family affair to celebrate her 40th! Almost all her cousins were able to be there from Colorado to San Francisco and then the gang from here in Oregon. With connect time, play time, and lots of laughter, we very much enjoyed coming together.

Even with the travel and time together, I was able, of course, to remain on my treatment plan.

Many of you know that one of my great joys is my “work” and I’ve been blessed to be able to continue to meet with my NVC practice group family four nights a week. I really don’t have the words to adequately express how meaningful it is for me and each group member to be together in a space we’ve created that is safe, open and supportive. We share in ways that help us embody compassion for self and others. We dive deep into the practice of unconditionality, self-acceptance and self-responsibility.

Here is a recently shared writing that people enjoyed and I share it here:

On the cancer treatment front, I’m a bit overwhelmed to give a full picture since so much has transpired. Here is a very brief summation.

On July 2nd I finished my second round of the combination of Vidaza and the the oral chemo drug, Venclexta. It is too early to know yet if the combination of these drugs will be effective in slowing the growth of the blasts. We will likely do another bone marrow biopsy toward the end of August and have not yet targeted a specific transplant date. There are so many unknowns with this disease and I’ve learned more than I ever thought I would. The one single thing I’ve been clear on from the beginning is that I want to stretch the quality time I have available as long as possible. And yes, there is some risk involved in pushing this envelope so-to-speak, yet it is what feels “right” for me. Being with family, my work, time in nature and enjoying the simple pleasures of daily life have brought me such gratitude and peace.

To give just a bit of the specifics:
My blood cell counts (especially the white) remain very low: WBC .69; Neutrophils .1 Platelets 36; RBC 3.01

The good news is that other than another bout of GI infection which is much better this week, I feel well. I’m able to exercise/walk again and though I’m on quite a restricted (and very bland) diet, I find it doable and I’m able to slowly add more tasty food every few days.

My next round of chemo will start on July 24th and most of my family will be able to be here to celebrate my 65th birthday on July 26th.

Recently, watching a bird in the bird bath in my back yard, I experienced one of those spontaneous bursts of joy—the delight in recognizing the simple ever-present gifts inherent in our world. I thought about the Thornton Wilder play, Our Town and found some of my favorite lines

Once again, I extend my deepest gratitude to each of you who have so generously contributed to my GoFundMe account. So many of you have reached out sending cards, letters, poems and heartfelt caring for my well-being. My spiritual community of friends lift me up with inspirational readings and wisdom drawn from their practice of choosing love. I’m forever grateful for such abundance.

May 21, 2019
A note from Kathy

Hello friends!

It’s been a while since I’ve checked in on this site and I’d like to share a couple of celebrations with you.

First, recently I was able to spend vacation time with my two children and I thoroughly enjoyed every moment. We realized that it has likely been almost 30 years since just the three of us vacationed together. In the past there have been partners, family and other friends or groups. It was my request a couple of months back to plan a shared experience while I’m still feeling physically healthy and energetic.

We headed off for five days up on Bainbridge Island where we had the chance to relax, rest, play, visit and eat great food. Our little slice-of-heaven haven was on Fletcher Bay.  With our own private boat dock and beautiful gardens it was perfect. Our big decision most days was when do we want to go out paddle boarding and kayaking versus going for a forest hike/walk versus reading a book or visiting on one of the patios.  A really rough life!

I especially valued the time and space to just BE together. Talking, listening and a couple of times staying in a potentially tense dialogue long enough to really hear one another—not always easy! The experience of being together confirmed, once again, that relationship—close relationship—is the most meaningful aspect of my life.  My children, grandchildren, siblings, friends and my students continue to enrich my life in more ways than I can actually speak of. And then there is the deepening relationship with myself—such an integral part of this process of navigating life with a life-threatening disease.

I’ve recently begun reading a book called “The Grace in Dying”, by Kathleen Dowling Singh. She is able to express concepts and a real depth of knowledge in a way that is clear, succinct and moving. It’s not a “feel-good” read and is not what I would necessarily call inspirational, but there is such depth and clarity and it speaks to me powerfully. Perhaps the greatest value for me is that it confirms that being right here, right now is the most essential practice I have at my disposal. Love and gratitude is experienced in every moment that I stop, that I pause, and become present here and now.

Accept—then act. 

Whatever the present moment contains, accept it as if you had chosen it.

Always work with it, not against it.

This will miraculously transform your whole life.

…Eckhart Tolle

My second celebration centers around some new medical information. I’m a bit hesitant to call it a celebration because it involves an unknown (for me) drug and one that has the potential for some uncomfortable and possibly harmful side effects.  Still, there is a chance that it might help reduce some of the disease burden in the growth and evolution of my MDS.

The drug, Venclexta, is known in clinical trials to be effective for patients with AML and CLL and we are going to try it to see how I respond to it—especially since I have high-risk MDS. My doctor and the pharmacists have worked with my private insurance.  They first turned down the request but we appealed and it was finally approved.  I’ll be starting on it this Wednesday. Yippee! Yay! Fingers crossed that I will weather the side-effects fairly well.

I have two big birthdays coming up soon that I plan to enjoy—Tony on June 3^rd and Angela’s beach blast on June 12^th.

If you are reading this message it is because you have donated to my GoFundMe account or you are in one of my NVC practice groups. I’m grateful to have you in my life. Thank you for your continued support and care.

I’m sharing this poem by Gwen Flowers in honor of Pat, the loving son of a dear friend who passed away suddenly two days ago of a heart attack. Pat left behind two young daughters. Life is fragile and we need one another as we navigate through these times that can be so painful.

Grief  by Gwen Flowers

I had my own notion of grief.

I thought it was the sad time

That followed the death of someone you love.

And you had to push through it

To get to the other side.

But I’m learning there is no other side.

There is no pushing through.

But rather,

There is absorption.

Adjustment.

Acceptance.

And grief is not something you complete,

But rather, you endure.

Grief is not a task to finish

And move on,

But an element of yourself-

An alteration of your being.

A new way of seeing.

A new definition of self.

May 1, 2019
A note from Angela

Mom and Tony had an appointment this morning with Dr. Maziarz to go over her cytogenetics report from her biopsy on April 18^th.   I was conferenced in by phone.  Her cytogenetics report came back showing the same thing it did in December.  This is a small ray of relief, since it means her cancer is “stable” and has not worsened from the disease perspective. There is no definitive way to know if the Vidaza has worked in some way since her cancer has not worsened or if the same would have happened without Vidaza.  What we do know is her cancer is resistant as it has not improved in the way we hoped, BUT it has not worsened.

Where does that leave her?

Last week Dr. Maziarz laid out four options that are written up in my update last week.  Today, he re-visted them in depth and answered questions we’ve formulated over the last week.

1 –No transplant, let her cancer take its course.  *Mom is not doing this option as of now.*

2 –Continue with Vidaza and add an oral chemo drug, Vencelxta, that could improve her disease burden or switch to Decitabine (same class of hypomethylating agent as Vidaza) and hope she is in the 10% that responds to Decitabine if they have not with Vidaza.  This would be a 2-3 month continued bridge treatment to a transplant with no guarantees of reducing her cancer.

3 –Do traditional chemotherapy as an in-patient in hospital as a bridge to a transplant in hopes to reduce her disease burden.  *Mom does not want to do this option as of now.*

Why? – There is no evidence as of yet that reducing disease burden before transplant directly correlates with the success of a transplant.  Furthermore, traditional chemotherapy in-patient is very intense thus creating more risk factors related to her health: i.e. infections, organ damage, less health stability to survive/handle a transplant.

4 –Go straight to transplant in 3-4 weeks.  *Mom does not feel ready to do this option.*

What has been made more and more clear to mom is SHE NEEDS A TRANSPLANT.   Dr. Maziarz suggests and recommends she go to transplant now, but is ok if she needs to wait a couple more months.  Mom wants to wait until August or September.  The transplant can be scheduled anytime with a 3-4 week period for preparation.  The risk of waiting is there is absolutely ZERO guarantees her cancer will not decide to explode overnight.   This type of cancer is unpredictable and any day her disease burden could increase.

As of today, she wants to do option 2 and transplant early August.  The drug he wants to try with her is not FDA approved for MDS but is for AML and CLL.  There are current clinical trials in place using Venclexta with Vidaza or Decitabine for high risk MDS patients.  Medicare would NOT cover this, so she is waiting to get an ok from insurance to try this drug. In essence it would be her own little clinical trial.  Again, no guarantees it would help.

We have cancelled our Boston trip and are looking to stay more local and have a trip that is less go go go and more relaxed to be together….. mother, son and daughter.

One day at a time.

April 25, 2019
A note from Angela

Mom has been in a holding pattern for essentially a couple of months while receiving her Vidaza chemo infusions in hopes to slow/reverse her cancer growth.  Last week she had her second bone marrow biopsy.  Yesterday, we went to get her results.  The biopsy measures the % of blasts in her bone marrow.  This tells us what her cancer is doing and if the Vidaza has been working.  She had 10% blasts in her first bone marrow biopsy. This put her in a high-risk category. Unfortunately, after four months/rounds of Vidaza, her blasts are still 9%.  Keep in mind, each biopsy is a random sample of bone marrow, so there is a +/- 1% error with each sample.  Her body did not respond to Vidaza as we’d hoped.

Why is this important? The ONLY cure for MDS is a stem cell transplant.  MDS will eventually convert to Acute Myloid Leukemia with virtually no cure treatments. Mom’s MDS is high-risk which means the time to AML conversion is estimated 9-12 months, with no guarantees it won’t be sooner.  Hence, a stem cell transplant is imperative.  We have been told by Seattle Cancer Care Alliance that the success of a stem cell transplant is greatly dependent on MDS being in remission (which equates to having less than 5% Blasts).  So, receiving news that her Blasts are still at 9% felt like a heavy hit. OHSU is telling her that there is, as yet, no data that confirms a difference in transplant success rates if she is at 5% or 9%.  There is great controversy over how important disease remission is for success outcome in the medical community of those who treat MDS.  This is an important discussion because it determines the next steps in her treatment. If possible, I’d love for Mom to have a third opinion.

OHSU has given her some options for what to do next.

• Option one is to do nothing and let the disease take its course.
• Option two is to switch from Vidaza to Decitabine, which is in the same class of MDS chemo drugs but 10% of people who do not respond to Vidaza respond to Decitabine.  It’s only a 1 in 10 chance, but maybe worth trying, weighing the risks of taking additional time to try Decitabine vs going to transplant before AML conversion.
• Option three is do traditional chemotherapy as an inpatient treatment at the hospital as a bridge to transplant while trying to kill off more of the blasts/cancer.
• Option four is to go straight to transplant.

Given she was on the spot and had two minutes to decide, for now she is doing one more round of Vidaza. It’s tricky, as most people who are going to respond to Vidaza, will respond by 4 cycles.  However, there is a very small percentage of “slow responders”, who show no response until cycles 4-6.  But since her disease is so high risk and will progress to AML with unpredictability, you don’t want to wait and keep doing a treatment that is most likely not working.  She is starting some heart and lung evaluations next week that are required in preparation for a transplant.  This will get that process started and in the meantime she has a few weeks to weigh her options, re-group with Dr. Deeg in Seattle, and potentially seek a third opinion. It also allows her to go to Boston with Tony and me for Mother’s Day.

Her bone marrow biopsy site has not been healing.  I did multiple dressing changes since last Thursday and it has continued to bleed. It has been scary for Mom as one time, as she was bleeding so much, we had to go to OHSU last Saturday.  They’ve finally decided she needs a platelet transfusion to help heal this wound.

Overall Mom is in amazing good spirits and we love her so much!

April 15, 2019
A note from Kathy

Hello friends!

While there is no big news to report in terms of my current MDS condition and treatment, this is nonetheless a significant week since a bone marrow biopsy is being performed this coming Thursday, 4/18. If all goes well and they get a good sample from the aspiration, we will likely have at least some partial information back around 4/24. The final pathology report will be available to us around the first of May.

I will be meeting with Dr Maziarz on 4/24 to make the next decisions in the treatment plan.  If the Vidaza treatment (I completed Round 4 on 4/2) is being successful—and we will know that based on a reduction in the “blast” counts in the marrow as well as any cytogenetic changes in the gene mutations—we will likely continue on to a fifth round of Vidaza. They will follow my blood counts closely and we will hope for continued reduction in blasts and stabilization. This would be wonderful news and we remain hopeful about this as a possibility.

If the Vidaza is not having an impact, there are three or four options for me to consider as next steps:

1. If the blast counts are not decreasing and there are no changes in the mutations, we can try adding another drug to the Vidaza to see if that is helpful
2. We can switch to a different hypomethylating drug called decitabine (generally only a 10% chance of success, but still an option to consider).
3. We can switch to a more intensive chemo treatment and/or a slight chance for a clinical trial drug to be added to treatment (not sure about this but it was mentioned)
4. We can proceed with medical tests and intensive chemotherapy as a preparation for a bone marrow transplant, sooner rather than later. I believe that I would be admitted to the hospital for this type of chemotherapy since it is very rigorous. They will want to do all they can to have me enter into a transplant when I’m stable and the blasts are decreased as the overall chances post-transplant are best if I begin in a stable place. Stable means low blasts, neutrophil counts of 1,000+, and in general good health.

If this option is the way we go, my sister Diana (a perfect match), will also begin the obligatory tests—heart, liver, kidneys and general blood work. I will be receiving her immune system and they will do a full analysis on her as well.

So, there you have it! The medical stuff is always very uncertain and amazingly, I find that I’m adapting to this state of “not knowing”. I honestly never would have believed it possible that I could sleep well, wake up (usually) in a positive and grateful frame of mind and move through my day in inner peace and great gratitude. I’ve discovered along with my students, family and friends, that there is so much to appreciate about LIFE! It is quite possible that each moment be recognized as the gift that it is, but it does require to BE HERE NOW IN EACH MOMENT. What a powerful practice to watch my mind move to the future and then to gently and lovingly come back here / now. I’m not trying to be at peace, it just seems more and more like an experience of grace for which I’m forever grateful. It’s hard to imagine receiving this diagnosis and then on top of that, being scared, unhappy and / or bitter.

I was with a friend this morning and as we were walking the last stretch back to my house, I was overcome with happiness that I’m able to walk…that I still feel well…that I have wonderful friends…that Life has given so much to me: a hug, a yummy meal, a comfortable bed, birds singing, being with loved ones. And on top of being with loved ones, I notice that everyone is a loved one. If it’s up to me, I want this to last for a long time!

I’d like to imagine that when I’m not feeling well, that not feeling well state, will also be able to be held. Here is a writing that I continue to enjoy:

• In this passing Moment
• I vow to choose what is:
• If there is cost, I choose to pay.
• If there is need, I choose to give.
• If there is pain, I choose to feel.
• If there is sorrow, I choose to grieve
• When burning—I choose heat.
• When calm—I choose peace.
• When starving—I choose hunger
• When happy—I choose joy
• Whom I encounter, I choose to meet
• What I shoulder, I choose to bear.
• When it is my death, I choose to die.
• Where this takes me, I choose to go.
• Being with what is—I respond to what is.

Excerpt from writing by Hogen Bays, Roshi

And finally, I’d like to celebrate with you the joys of a wonderful trip to California a week ago with Anthony and Nicole, Angela and Scott, and of course my granddaughters—Scarlett and Abrienne. We were able to be together under one roof and in one mini-van, for six whole days in the sun. It had been my dream to be together just to play, relax and connect. There were many highlights including the fact that my sister Teresa and my brother-in-law Allan were also there just a few miles away so we were able to be together just about every day. Perhaps the biggest highlight—believe it or not—was sharing a room with Scarlett and Abrienne. If you have not yet had the joy of being a grandparent, let me tell you that waking up early and cuddling with two incredibly bright and fun beings is, for me, a heavenly experience. The talking in whispers while planning a day full of adventures brings out the playful part of me. Add to that music, pool time, yummy meals prepared by others (thank you Angela), desert animals and plants—just what I wanted!

My Family

Abrienne and Scarlett

Grandma and Scarlett

ONLY CONNECT
On your deathbed, will you still care about all the arguments you won, about all the times you proved to others how ‘right’ or how ‘enlightened’ you were, about all the knowledge you amassed on your journey to this moment? Will you still be thinking about how much money you made or didn’t make, or how far you advanced up the material or spiritual or social ladder?

Or perhaps only this moment will matter, only the grace of each and every breath, only the precious fragility of life itself and the gratitude for life having been at all.

Like the dream of a childhood Christmas long ago, perhaps you will not remember the size or shape or the monetary value of the gifts that life offered, or what the gifts were wrapped in, or who got a bigger or better gift than you. Perhaps you will only remember the love and the longing and the hope with which the gifts were given and received.
It was only ever about the love and connection.Jeff Foster, Falling In Love With Where You Are

March 28, 2019
A note from Kathy

It’s been some time since adding an update and sitting here at my desk looking out on my garden seems a perfect time to share what is on my mind and in my heart. I worked in the garden this morning with a friend and feeling the breeze, the sun on my face and the new spring growth fills me with joy and a longing for more spring seasons to enjoy. Again, and again and again, I’m struck by the beauty and aliveness in the most simple activities. And a lovely time in the garden is not required! It can be washing dishes, stopping for groceries, even going to pick up my taxes which I did this week! I realize that being here in Life and feeling well is such a gift. This writer says it beautifully, I think:

Normal day, let me be aware of the treasure
you are. Let me learn from you, love you,
savor you, bless you before you depart.
Let me not pass you by in quest of some
rare and perfect tomorrow.
…Mary Jean Irion

Many of you have asked about my treatment updates which is why this page was initially created. There is not a lot of new information to share so here is a brief summary:

I began Round 4 of chemo on Wednesday of this week and while we had hoped that my cell count numbers would reflect an increase in my baseline count, that is not what we found. Instead, we found a decrease in the neutrophil count from .9 to .4. This is not necessarily “bad” news—just not what we had hoped for. I may be one of those whose body responds more slowly. This means, however, that I’m back to being in the neutropenic range so I’m again taking all of the anti-meds—fungal, viral, bacterial. My body seems to tolerate them with minimal side effects, so that is a blessing. For some people it can be harder to take these meds.

The next big date coming up will be for the biopsy that will happen on 4/18. I expect we will know within 24 hours whether or not the chemo has been effective in at least keeping the blasts under check. As you know, if there is stabilization in the blast growth, it will buy me more precious time. If the Vidaza (chemo) is not working, I will need to decide very soon how to proceed—transplant or not? I trust that I will know what is right for me.

With friends and family close by, I’ve been treated to rides and company during the chemo visits and since I feel so well physically, I’m living a fairly luxurious lifestyle. Angela will continue making trips over from Bend and I couldn’t ask for a better nurse!

This round of chemo will complete next week on 4/2, and with permission from my doctors, Anthony & Nicole, Angela & Scott and Scarlett and Abrienne and I will fly down to Palm Springs for a mini-vacation in the sun. I’m looking forward to six whole days/nights with my family on an extended play date!

With love and gratitude to each of you who have given to me in so many ways—financial, emotional, spiritual. I feel truly blessed to be able to be sharing this journey with you.

February 28, 2019
A note from Kathy

Hello Dear Ones,

I’m taking time this afternoon to sit for a few moments in quiet contemplation, reviewing my day and feeling my heart. What a perfect time to share with you a mini-update.

On the medical front, I began Round 3 of chemo yesterday and all went smoothly. While my numbers have remained low, that is not necessarily an indication of  how effective Vidaza is on stabilizing/stalling my cancer growth. For some people, it can take up to three rounds before there are measurable results and it’s possible that that is what is happening with me. Still, though my numbers remain low, I’ve not yet required any transfusions and my platelet counts actually increased this week. As Angela has said before “for today we dance!”

In the midst of the uncertainty and the stress of time passing by so quickly, I’m glad to feel the depth of love and gratitude I have for others, myself, and even for this crazy, chaotic world we seem to be living in. I notice peace, stillness, love and trust as daily companions—at least for segments of each day. There are also moments of uncertainty and fear, but these are short-lived, as I come back to “right here, right now”.

One of the best parts of yesterday was being able to spend time with Anthony (I’m not sure why, but I’ve begun to think of Tony as Anthony again. I called him Anthony for at least the first 10-12 years of his life and it’s coming back to me again for some reason). I had a lovely oncology nurse named Jade yesterday and we shared the room with a man who is also ready to undergo a stem cell transplant. Our topic of conversation was: hope…a word I’ve been contemplating a lot recently.

I’ve made the firm decision to wait until April 17^th before having another bone marrow biopsy. My doctor agrees that this is a reasonable approach and best of all, it buys me an extra month to spend time with my family and continue to facilitate my groups—two priorities for me. On the family front—we are planning some time away in early April to do nothing more than play, visit, share and connect. I plan to soak in Scarlett and Abrienne each and every minute I am with them.

I continue to receive cards with touchingly warm sentiments along with donations for financial support. The well wishes are heartfelt and I am both moved and inspired. I want to share here a writing that I’ve been sharing with others and reading daily for myself. I hope that you enjoy it as much as I am.

Headlong Into Love by Danna Faulds

I slip into the swift river of grace
the moment I stop trying to control
my fate. The current takes my 
breath away, leaving me amazed
at the release. Use me up, I say.
Smooth my rough edges
until I offer no resistance to the flow.

Within the enclosure of my open heart,
may awareness wake and take aim
at my last attempts to grasp the known.
I pray to give myself over to a strength
that isn’t mine, to be carried by the 
energy of change and evolution.

I pray to tumble headlong into love
and not reach out even once
to try and break the fall. 

February 17, 2019
A note from Kathy

I have some downtime here in Bend and I sit relaxing with my newest grand dog, Finn. The girls are upstairs taking their naps.

There is so much happening inside me in this experience of coming to terms with a disease that is fraught with uncertainty. There are decisions to be made and the clock is ticking. As my friend CeCe says, there are a few options yet none of them have good outcomes. The active lifestyle I’ve enjoyed is different now. Even a “successful” transplant contains many short- and long-term health effects that impact one’s quality of life. Still, in the midst of the intensity and uncertainty, if I stay in the present moment, or as I’ve begun to term it “right here right now”, I discover again that “all is well”. I feel the gratitude in being able to still be with those I love. I see the awesome beauty in nature. I experience the wholeness of my work, being present with others in such an honest and vulnerable way. And if I’m able to have this for a while or for a long while, I’m forever grateful.

In a conversation with Angela last week, I reminded her of a hike we did years ago—McNeil Point up by Mt Hood. There is a place where the trail turns and opens onto an amazing full-on view of the mountain. It looks close enough to reach out and touch. As I approached this place in the trail, my fear of heights kicked in big time and I was unable, on my own, to move forward or to turn on the narrow trail and go back. I was frozen. With one in front and one behind me, Tony and Angela were able to help me to keep moving forward.

I liken that mountain trail, maybe four feet wide in that spot, to my experience now with the Present Moment. This very moment is the trail. When I stay in the moment, I’m present, trusting and calm. I know from inside myself that all is well—with or without this disease. At those times that I step off the trail (and I do) I fall into worry, anxiety or fear. I’m definitely on an accelerated spiritual course and it has its ups and downs.

I watch my granddaughters play, laugh and show their delight in the most simple things and I remember what matters most.

February 14, 2019
A note from Angela

Mom finally got to see Dr. Maziarz yesterday at OHSU. Mom had originally been under the care of Dr. Meyers and after some networking she heard Dr. Maziarz could have more experience with MDS. She had a consult a month ago and decided to switch but has been essentially lost in the transfer and not able to see any doctor for the last four weeks, which has been stressful.

The appointment yesterday was neither good nor bad. Her blood counts continue to be low and while its positive she has not required a transfusion yet, we were hoping her counts would be trending upward more by now. It may still be too early to know if the Vidaza is working for her. The waiting game adds a lot more uncertainty to a disease that is already completely uncertain. She has decided to do four rounds of Vidaza chemo before having a second bone marrow biopsy. Dr. Deeg in Seattle recommended this and Dr. Maziarz is fine with this plan.

After her fourth Vidaza round in March, she will have a second bone marrow biopsy. The second bone marrow biopsy will give us an idea if her blast count has been reduced, which would mean the Vidaza is working. In one sense this means her MDS is “regressing” and research shows higher stem cell transplant success rates when disease regression occurs. At this point, if all things were equal, mom’s preference would be to receive care in Seattle, but ongoing post-transplant support is much more easily accomplished here. Additionally, mom’s insurance does not cover treatment in Seattle so she would have to wait until July when her Medicare kicks in. She is doing her best to take this step by step and holding onto all possibilities. If her counts improve there is a small chance she could wait longer, but the trickiest aspect of her cancer is waiting could also give it a chance to grow even more. Decisions are not easily made on this journey for mom.

Mom remains neutropenic (susceptible to infections) and is continuing to take many anti-infection medications: antibiotics, antifungals, antivirals. She is going through many emotional ups and downs and is doing amazingly well, all things considered. She continues to be there for her family and show courage and strength. Her NVC groups give her a sense of connection and grounding and I’m so grateful she has them. She had the unfortunate task of being deposed for my lawsuit and had a week of grueling days with attorneys. I’m glad that is behind her now. Her strength truly is remarkable. She is coming to Bend this weekend with Tony, Nicole and the girls and we’re planning on having a nice “family weekend”.

January 25, 2019
A note from Angela

We met with Dr. Deeg at The Fred Hutch Center (also known as Seattle Cancer Care Alliance) this morning in Seattle. This was a consult to gain an idea of how The Hutch would treat mom’s MDS, any clinical trials/different treatments they offer in Seattle that OHSU does not offer and also to create a connection with Dr. Deeg in case she wants to consult with him at a later point. Dr. Deeg is considered to have expertise with MDS and is a long-time physician with a lot of research experience around MDS and stem cell transplants. He is someone you want to have on your team, even if it’s just to consult with.

It was a very helpful meeting but did not necessarily change what we already know about her MDS, except giving us more in-depth details and an honest reality of the gravity of her MDS. He concurred her MDS is high risk and very aggressive. He agrees she should continue 2-3 more rounds of her Vidaza chemotherapy with the hope her MDS stabilizes before a transplant. The more stabilized her MDS is going into a transplant, the higher the success rates are.

Dr. Deeg stated that the research shows, going into a transplant with a stabilized MDS can offer a 35%-40% cure (not counting GVHD, see below) and going into a transplant with an unstable MDS could mean a life expectancy of 1.5 years. With these next Vidaza cycles we are looking for improved peripheral blood counts and a decrease in her number of blasts. There is a 50%/50% chance her body will respond to Vidaza. If it does not, he said The Hutch would recommend induction chemotherapy, the type of intense chemo that kills all dividing cells in the body and has the usual intense chemo side effects.

It is unknown at this time what OHSU would recommend if her body does not respond to Vidaza. For now, she will continue, and OHSU will do a second bone marrow aspiration after her 3rd or 4th round of Vidaza to re-evaluate and decide treatment course and transplant schedule at that time. At that time, mom may have a follow-up consult with Dr. Deeg. We are learning this disease is unpredictable and the level of uncertainty is extremely high. It is nearly impossible to know all treatment options at this time until we know how her disease will behave.

Mom’s blood counts on Jan 22nd went back down slightly. This was concerning but Dr. Deeg said is too early to know if it’s the disease progressing or the expected window of fluctuating levels during the Vidaza stage. However, going into her second round with lower numbers, means she will be very susceptible to infections and will have to go back on antibiotics and anti-fungals. Additionally, Dr. Deeg told her when numbers go this low at this time, there is always the chance of hospitalization until she re-stabilizes.

He did agree she was lucky to have found a 100% match with her sister, Diana. However, when female donors have had pregnancies that presents additional GVHD risk factors for complications. Dr. Deeg also helped clarify that even with a related 100% donor, the risks of disease relapse and GVHD (Graft Vs Host Disease) still apply. I think this was hard for mom to hear. The bottom line, stem cell transplants are very risky and no one is invulnerable to all the serious potential complications.

A little information on GVHD (Graft Vs Host Disease)… roughly 50% of all transplant patients develop GVHD. A person can develop acute GVHD that lasts 3-6 months or chronic GVHD that can last years. The treatment of GVHD involves high doses of steroids that have serious side effects not only rendering quality of life potentially lower, but also incapacitating someone for years requiring long term care. This was also not easy to hear.

It’s a difficult time, but mom is a Rockstar through it all. No surprise there. We got to have an afternoon in Seattle together: Pike Place Market, fish and chips, connection and good conversation. I can only hope mom can have more of these life, love, joy filled small experiences woven between the heavy weight of her disease.

January 17, 2019
A note from Angela

This was a busy week for Mom. She was supposed to start her second round of Vidaza on Tuesday; however, her blood counts were too low. Dr. Meyers explained that some people need an extra week of recovery in addition to the three weeks in between Vidaza infusions. At first, we were very worried, but her blood counts are trending upward (this is good) and her body just needs a longer recovery. Her blood counts will be re-checked this Saturday (01/19) with the intention to start her second round next week.

Mom also had an appointment with Dr. Maziarz this week, who is the head of the blood cancer oncology department at OHSU. It’s important for Mom to get second opinions and to have a doctor whom she feels most comfortable with. Dr. Maziarz was recommended through a family friend and she was finally able to secure a consult with him. She really likes Dr. Maziarz and his approach to the treatment of MDS. He was able to shed light on several key elements as well as answering questions on her MDS and treatment. She has requested to be under his direct care for the remainder of her treatment at OHSU. Dr. Meyers is a great doctor, but Dr. Maziarz is a better fit.

One important thing we learned more about is Mom’s cytogentics report. She was given a twenty-page printout with no real explanation so we’ve assumed, in our own attempts to interpret, that it was horrible. We learned that Mom has normal chromosomes. This is good. She only has gene mutations on a molecular level.

Think of chromosomes as the foundation and frame of the house and the genes as a window or a light fixture. The goal is to have everything functioning, and it’s easier to fix a window than the foundation. Her gene mutations, however, are indicative of being aggressive, so they need to be eliminated, which will happen with a stem cell transplant.

Mom and I will drive up to Seattle next Wednesday for a consult with the Fred Hutchinson Cancer Center. “The Hutch” is considered a pioneer in developing stem cell transplants and is very active in using clinical trials. Dr. Deeg, whom Mom is seeing, is a long-time senior oncologist who comes very highly recommended in the MDS community. This will be an opportunity to see what they are doing for treatments, gain insight into any difference in treatment courses between the Hutch and OHSU, and again receive a second opinion. Mom’s insurance does not cover treatments if she were to pursue any in Seattle, so it is unlikely she would be able to go there. Additionally, having a transplant at OHSU still makes the most sense, since she lives within 5 minutes and can recover at home after her transplant during the 100-day quarantine.

On a personal note, it has been a somewhat trying week for Mom. It has been difficult for her at times with living alone, especially as little micro events occur that require help. One day she was flossing and one of her crowns fell off. She couldn’t sleep, worrying about a possible infection and went to great lengths to get in to see her dentist the next day. But then OHSU told her she needs to take a large dose of antibiotics before any dental procedures, but she was occupied with other obligations and couldn’t get to a pharmacy. It sounds small but was very stressful.

Another night, her port kept bleeding after being accessed. Thank goodness I was here to help her bandage it and troubleshoot while calling the on-call doctor. Battling this serious disease is stressful and the level of uncertainty adds an extra layer of challenge. We’re learning quickly things can change day to day. I’m grateful Mom has amazing family, friends and a community to support her. As the week closes, she is feeling more upbeat and is very excited to spend the weekend with her sister, Teresa, who just flew in from California.

January 12, 2019
Note from Kathy

Hello,

I’m writing with a heavy heart today after finding out yesterday that Jerry and Teresa are both only a 50% match. I was honestly surprised, but perhaps that’s how hope works. We stay “up” until we find out otherwise. I guess life feels better that way so maybe it’s a good approach. I found a quote by Desmond Tutu, “Hope is being able to see that there is light despite all the darkness.

I’m going to be brief because I’m completely tired of sitting at this computer! Still….I want you all to know what I know. It makes me feel less alone.

More stuff as it floats into my mind:

I had more labs drawn yesterday because I called in Thursday night seeking advice about what feels like blood blisters in my mouth. There was concern about my platelet count so I was asked to come in, have blood drawn. The good news is that my numbers went up ever so slightly since Tuesday and I did not need a blood transfusion. Small celebrations, but each one counts!

Diana went with me to OHSU since her HLA match test needed to be repeated as the first one did not have enough saliva to test and we want to avoid the time delay of sending a second sample through the mail. Her mouth was swabbed and the test results should be ready next Wednesday.

I did not see my physician, Dr. Meyers, but did talk with the physician assistant Sean on her team. He said that after the results are known on Diana’s HLA match they will look to the world-wide donor pool for a match for me if needed. He also said the stem cell transplant may occur as soon as in a month or two. (!!) This came completely out of left field and I’ll cover more about this with Dr Meyers this coming Tuesday

Round 2 of Vidaza begins this Tuesday, 1/15 and Angela is driving over from Bend on Monday. She will be here I think until maybe Friday. It’s always nice to have her here with me. Just sharing the house with someone is nice.

Dick has set up a Caring Bridge site that will be ready to go when I need more day-to-day support. There will be a calendar with things for people to sign up for. It’s not yet necessary.

I have an appointment with Dr Deeg up in Seattle at Seattle Cancer Care Alliance (SCCA). Angela and I will drive up most likely on the 23rd for the early morning consultation on the 24th.

I’ve reached out via email to Nicole’s uncle Kent and hope that we will connect within the next several days. He’d suggested I obtain an “expert quarterback” to assist in providing information and ideas related to my care. I’d like to find out a bit more about what he thought this person might do and how I might find such a “quarterback”.

We finished the final draft for the GoFundMe site, and Angela gave Dick some photos to include on the page. After we complete some final tweaking next week it should go-live! It’s good to have my part done and I’m looking forward to having it posted. A big thanks to Dick, CeCe, Angela and Tony for their help with the website and agreeing to oversee it long term!

I’m making progress and being very busy as I feel compelled to ‘“get my affairs in order” along with doing what needs to be done for my MDS. There is still quite a lot to accomplish, but the overall plan for getting important things in order is coming together and I like the attorney I’m working with. She understands that I really want to get this done and she’s made herself very accessible.

At times I feel completely overwhelmed with so much happening so quickly. It’s a time of uncertainty, some anxiety and intermittent bouts of feeling the heaviness of all this. I hope to get more clarity about my options, possible outcomes, etc. since I want to be as ready as I can for what comes next.

I love you all very much!

December 31, 2018
A note from Kathy:

Hello sweethearts,

CeCe picked me up this morning and I went in for my blood labs. They decided not to try to access through my chest port (still a large hematoma and very tender), but the oncology nurse did a great job of finding a good vein.

Good news—no transfusions needed yet

Okay-to-be-expected-news—all three of my numbers fell
Platelets from 103 to 36
WBC from 5.4 to 1.9
RBC from 3.8 to 3.73

Oncologist reminded us that based on ten days past first round of chemo, this may be a low point and the numbers dropping is totally expected. It was my last day at Providence. Wish to heck that I had had a crystal ball before I cancelled with them, but realize that I had no way of knowing.

My next appointment is on 1/8 at OHSU. I will also be meeting with the OHSU oncologist, Dr Meyers. I will be scheduled there every Tuesday morning for labs and transfusions (when needed). I expect that they will have the HRL reports back on the sibs on or about that same day.

My energy is good. Felt a little “down” last night after coming back from Maury’s and being with the girls and Tony and Nicole and Maury. But the “down” didn’t carry over into today and I’m glad for that. When I think of it (like waking up in the middle of the night), I remind myself that this is what is unfolding now in my life. I realize in those moments that I have a wonderful life—with so much love and support. And that love will always remain with me. For that I’m so very grateful. And we all might get lucky and have a great match!

(will reach out to Dr Deeg’s office at Hutchinson on Wednesday)

December 29, 2018
This is a note from Kathy:
In general, I’m doing well and even sleeping very well. I continue to find two emotions in the foreground of my daily experience—gratitude (most of the time) and grief (in moments of time). It seems like an odd combination, but the gratitude is so palpable and alive that I often find myself smiling—for no good reason!

Another thing that I see EVERYWHERE is the “goodness” of us as a human species. It doesn’t matter whether I’m talking to an insurance agent on the phone or setting up a doctor appointment or having an email exchange with an attorney, I find that every person I’m connecting with has this great “goodness”. It’s as if goodness is ever-present and now I see it everywhere and all the time. I’ve experienced these “states” before as part of my own spiritual journey but this present experience of gratitude doesn’t seem to come and go—it remains here.

December 24, 2018, 10:06:45 AM from Angela Marchant
Mom’s lab work from today is fabulous after her first week of chemo!!!! All her blood counts went up! This is fantastic news. She is still at risk for acquiring an infection BUT it’s a promising sign her body is responding positively to Vidaza and she needs that. It’s still early and next week her levels should/could drop as the chemo continues to work and kill off the Blasts and blood cells but this is a small victory we’ll take. This is not predictive of how her body will respond long term, but it’s a good first step forward in a long journey! And while mom is chemo symptom-free for now, we were reminded that there is a accumulative effect that will be more likely to occur in the next chemo rounds. But AGAIN, for now we dance!

December 17, 2018
Kathy had her first infusion of Vidaza this afternoon. While she was waiting for it to begin she texted the following:

Hello family! I’m here at the infusion room st St Vs. Super nice team supporting me. CeCe is here with me. They are about to start the chemo thru a standard IV. They agree that the hematoma is pretty bad and not worth trying it today. It does however, look and feel better than yesterday. My blood counts are slightly better than a couple of days ago. My blood pressure is back down to my normal range–120 over something.

All in all, I’m doing pretty well. They gave me a half dose of anti nausea meds (at my request). We will pick up a prescription as we leave here and I’ll have more drugs if I need them tonight.

Sending my love to all of you. I’m keeping my 6:30 practice group tonight, but I canceled my 4:30. Feeling gratitude, but I’m not sure why!?! Still….it’s definitely present.

December 14, 2018
Kathy had a port implanted today. Her Vidaza treatment is scheduled to start Monday afternoon. She’s under severe threat of infection, so everything she may touch needs to be sanitized, and anyone in a room with her should wear a face mask if at all possible.

December 11, 2018
Kathy has been diagnosed with Myelodysplastic Syndrome (MDS). If you seek information on this disease, the MDS Foundation has a 3-minute video introducing Building Blocks of Hope, an extensive exposition of symptoms, treatment, and ways to support MDS patients. The page includes instructions for viewing the document online or downloading it.

The following is Angela’s plain English description of Kathy’s situation…

Mom has an aggressive form of MDS, Myelodysplastic Syndrome. She has the kind that will turn into Acute Leukemia without treatment. MDS is a form of blood cancer, where the stem cells inside her bone marrow that are responsible for creating her blood cells have basically mutated and cannot create healthy blood cells. Blood cells consist of three types: red blood cells, white blood cells and platelets. Red blood cells are what carry iron for our bodies as well as oxygen. White blood cells make up our immune system to fight infections. Platelets are involved in helping the body form clots. For example, if you get a small cut, platelets are partially what clots up the blood at that site, so the wound stops bleeding. In MDS, a person can have abnormal red blood cells, or white blood cells or platelets. In severe MDS cases, all three are involved (multilinage dysplasia). This is the case for mom. These abnormal cells seen in the blood marrow are called BLASTS. MDS’ severity is also graded based on the percentage of BLASTS seen in the bone marrow. Mom has 10% BLASTS, which is considered high. Once BLASTS reach 20%, it becomes Acute Leukemia. Additionally, at mom’s age, her bone marrow should be roughly 45’ish percent made up of blood cells and the rest fat. Her bone marrow is made up of 95% cells (called hypercellular), which is also abnormal and further confirms the severity of her MDS.

Mom is still waiting for the full report on her bone marrow biopsy, which will include a Cytogenetics report. (This report tells us how many chromosomal abnormalities there are in her cells which is a part of the MDS grading process.) This will help predict how fast her MDS could progress into Acute Leukemia. It will also help complete the grading on the severity of her MDS, but Hematologist/Oncologist, Dr. Moore, has made it clear without these extra details, there is more than enough sufficient data to suggest she needs aggressive treatment NOW.

Mom was recently in the ER for a severe Diverticulitis flare up. While this infection has cleared, because her white blood cells are suppressed, she is considered, Neutropenic. Neutropenic means her body cannot fight any infection. This becomes critical because any infection can become very serious for mom. Her coagulation study is normal, which means the other clotting factors involved in her body’s ability to clot are working. This is good. Her organs are also functioning normally right now.

The first treatment mom needs immediately is to start a mild chemotherapy drug called Vidaza. Vidaza suppresses the production of the abnormal blood cell growth in her bone marrow. By suppressing the growth of these abnormal cells, her normal blood cells can hopefully be stabilized. This has two benefits. One, it hopefully stops her BLASTS from increasing, thus thwarting her MDS turning into Acute Leukemia. Second, it will resolve her MDS symptoms: shortness of breath, fatigue, inability to fight infections, excess bruising with significant hematomas (large swollen areas of internal bruising and bleeding from her inability to clot).

Vidaza is given intravenously through a port. Mom needs to have a port placed. A port is like an internal IV catheter. These are under the skin, have a low risk for infection and are very convenient. Once the port is in place she is ready to receive Vidaza. The protocol, is Vidaza infusion daily for one week (Mon-Fri), followed by three weeks off. Vidaza infusions will take 1-2 hours. And then back for one week and then off for three weeks. This can be done indefinitely. She will also require weekly blood work to monitor her blood cell levels. The disease will eventually find a way around the Vidaza treatment, but on a short term basis, it can help stabilize her blood cells and buy her time for her next treatment: a stem cell transplant. Initially on Vidaza, her blood counts will get worse before getting better. The biggest concern here is she will become even more Neutropenic and very susceptible to any infections if exposed. The side effects are in theory less than with aggressive chemo treatment. Most people have some fatigue, maybe light nausea. She will not loose her hair. Until she completes one cycle (one week/month) she won’t know exactly how her body will feel on the drug. While her counts are even lower initially, she will need to be extremely cautious about any exposure to any infections, will probably need to take antibiotics prophylactically and may need blood transfusion(s) until her blood cells stabilize.

Dr. Moore has placed a referral to OHSU Oncology. She should have her first appointment by the end of the year. Dr. Moore at Providence does not do stem cell transplants, so mom has to go to OHSU. She can also go to a clinic in Seattle (more on that later). OHSU would handle her stem cell transplant. Its actually a very straight forward transplant (as far as transplants go). Follow the link below for a simple explanation. The first place to look for the best matched donors are siblings. The only caveat to this is sometimes gender and age. Female donors who have been pregnant can carry antibodies on their cells making them less favorable, but not always. OHSU will look at the age and basic health profile of mom’s siblings and determine if they will try to match them first. Otherwise, they look to the International Donor Database. Mom’s children can sometimes be a match but are not ideal. To determine if someone is a match, they would just have blood drawn (like any regular blood work up) and from their blood they are determined to be a match or not. The process of finding a suitable donor can take months. And the better matched donor increases the success rate of the transplant.

Of course mom has a friend who had MDS and had a stem cell transplant and developed Graft Vs Host Disease (GVH). This is a worst case outcome from a transplant and as Dr. Moore stated, equates to trading one horrible disease for another one. However, this is a worst case outcome. I do not have the statistics for GVH in MDS, but will obtain them from OHSU. GVH is lowered when the donor match is better. There are 10-12 markers in the donors blood they are trying to match to the recipient. The higher the match , the better suited the donor is.

*If mom does NOTHING, she has around six months to live.
*If mom waits more than a couple of months (an approximation) before staring Vidaza, her MDS could convert to Acute Leukemia and she could have weeks to live.
*If mom does Vidaza chemo through a port, and her blood levels stabilize, she can hopefully avoid her MDS developing into Acute Leukemia, and have time to find a donor for a transplant.

When she starts the transplant process, she will basically need to sacrifice a year of her life. More details to follow on that but it is very intensive and she will need to not work, not take care of Scarlett and Abrienne, not do a lot. It will be a rough year, but with a good donor, she has the potential to “cure” her MDS and restore a more generous life span that would far surpass the six months life expectancy with no treatment.

Of course when you go back to the risks of a transplant, which have not been discussed yet, as that will be with the OHSU team, it is a very overwhelming and scary decision. But a somewhat obvious decision to an outsider who wants her to live. Given that her health is otherwise perfect, Dr. Moore, says its all the more reason to be aggressive and eradicate the disease. Mom does not have any other significant health issues that would complicate her treatment options. Being in good health also means her body will be strong to endure the treatment.

Mom has an appointment on 12/18 to recheck her blood counts.
Dr. Moore will be ready to start a port and Vidaza as soon as mom says yes. I’m not sure yet what mom’s insurance/financial status is, but given her MDS could convert to incurrable acute leukemia in a matter of months without Vidaza, I think this needs to happen no matter what.
Dr. Moore is also ready for a follow up the day after mom has her first appointment with the transplant team at OHSU.
Mom can get her weekly blood work and Vidaza infusions with Dr. Moore’s office while OHSU coordinates finding her a donor. Once a donor is secured, all her treatments will be at OHSU.

Mom can always seek a second opinion at any other institution that treats MDS and specializes in stem cell transplants. Dr. Moore recommended the Fred Hutchinson Cancer Research Center in Seattle WA if mom wants to shop around for second opinions. Fred Hutchinson is has a larger program with access to other potential clinical trials. They are international and pioneered stem cell transplants. This does not mean OHSU isn’t a good viable option, but some people like to get second opinions. Vidaza was a clinic trial drug before being approved by the FDA in 2004. It currently is the industry standard and has been for 20 years for treating MDS.

Link for basic diagram on stem cell transplant:

Angela Marchant, High Acuity RN
Bend Memorial Clinic Urgent Care