After staring at The Luminaries on my bedside table for a few minutes, realizing as I did so that it might be the last book Sarah ever recommends that I read, I avoid picking it up. I need to make it last.
I instead flip through my phone but can't find much of real interest there. Reading news, watching sports highlights, playing phone games - all seem a silly pursuit at the moment. But I need a break from the stress, and I'm far from ready to sleep.
We'd reluctantly purchased a small television for our room last year, when it became a regular circumstance that Sarah would be recovering from chemotherapy for a couple days every other week, and needed the distraction that Netflix could offer. So I decided to try this method of distraction, and dove into my Netflix queue. It didn't take long as I scrolled through the list to realize it was a mistake.
Shows we had watched and loved but never deleted from the queue - Versaille, The Americans, Portlandia, Stranger Things, Vikings, The Magicians.
Shows we never got to - The Badlands, Peaky Blinders, the last episodes of Parts Unknown.
The third season of The Expanse that we started watching shortly before her hospitalization. The series finale of Sense8 which released 2 weeks ago. We were so excited.
The Marvel shows that she never cared for that I watched when she was crashed out from chemo.
Yes, they are just TV shows. Not even documentaries. But dammit, something we shared - the anticipation, the interpretation, the discussion, the "just one more before we sleep tonight" thrill of shared experience. Knowing that we'd be letting the challenges of our careers, our parenthood, the stresses of daily existence float away for 30 or 60 minutes before we slept and readied ourselves for another day.
I have another book on my table, All The Light We Cannot See; which I planned to pass to her side of the bed when she was ready to consider her next read. (She never took my word for it, my literary tastes were always suspect). Always the scientist, never single-sourcing any input, I always had to work to sell a book choice to her. If it was worthy, she'd devour the 800 pages it took me 3 months to complete in a matter of days. She would have liked this one. A tale of the human spirit and it's ability to persist regardless of obstacles. Sounds like someone I know.
I can place this on her table tomorrow. She may pick it up and hold it; turn the pages, look at them through tired eyes. But it will not be reading. There will be no shared experience from this.
Her clicking away at her computer next to me as I read before drifting off to sleep. Talking about the next day's plans and hopes. A moment stuck in the frame of the past.
We've been fortunate to have travelled over the years. We've been spending time with photo books we've made from trips - Disney, Vermont, Italy, Florida. In lucid moments this brings joy. Which turns to talk about where we will go next, from Sarah. Iceland? Ireland? California? And we discuss the details, and how wonderful this will be. Making lists of things to do. How wonderful this will be.
The queue. "[Items] awaiting their turn to be attended." It's an unfulfilling concept. We'll never have enough time. It defeats us before we can begin. Relive the moments in conversation. Escape into the photograph. Wrap the experiences of life around your heart. Delete the queue. Hug tight the memories that are real and part of you for a lifetime. It's all we really have.
Friday, June 22, 2018
Monday, June 18, 2018
Hopes, hopes dashed, fear, and goodbyes
Hi Friends.
Husband Will here. I wanted to offer thanks and also give you all an update on Sarah. While you are here please revisit some of her amazing words from recent months. She is a light like no other I know.
The benefit was amazing, so much love and generosity. Thanks to family, friends, friends of friends... it was a beautiful afternoon, our family was strengthened by your company, and our ability to fight this disease was boosted through your purchases and donations. I sincerely wish I could send you all individual thanks but this is the best I can muster right now. It means so much to Wylie, Finley, and I that you care so much about their mom.
Subsequent to the benefit, Sarah was ruled out of one clinical trial at Bethesda. She was too much of an outlier towards the results the researchers were seeking. Unfortunately success of trials and money to be gained via pharmaceuticals is a huge factor in being selected for these potentially lifesaving opportunities. We remained in touch with the network and were hopeful to be selected for another promising trial. After going through required tests, prodding, and lab works Sarah was ineligible due to a single lab result. As you can imagine this was devastating for us.
We turned to our holistic doctor to help us design our own defense. Sarah's knowledge of studies and perseverance in staying up to date with the latest papers and research was a huge benefit towards this process. We started on aggressive measures to slow progression.
All of the above was only during the course of the two weeks following the benefit event. During this time we enjoyed a beautiful weekend in Pentwater with her parents and siblings - she even made it into the 50 degree water with a wetsuit. Mobility was not easy (beaches + wheel chairs do not mix well) but it worked out.
Also, Sarah proudly turned in her 3-year Prius lease - she had worried it would be her last car when we put pen to paper in 2015. She drove home with a new model, and a boost - she was going to beat this, and this also would NOT be her last car.
She was able to attend Finley's end of school year orchestra concert (amazing!), enjoyed back to back days of backyard barbecue fun with friends in Ann Arbor and Dexter, and was plotting our next moves in beating this disease.
On June 5, the pain in her hip became extreme, and we took her to UM Hospital. X-ray was inconclusive but an MRI revealed a fracture in her pelvis. She was admitted, and stayed for 4 days.
Per her team of physicians, she is looking at a probably 6-month healing period for her hip. With every transfer and movement there is a bit of danger. But Sarah was so happy to not be on bedrest, to still have a small degree of freedom.
In the past week, and particularly the past few days, her condition has rapidly deteriorated. We are waiting on reading of a scan done Friday to learn if there is any information that the doctors can provide about her prognosis. While hope and optimism are always our objectives this outlook is becoming increasingly difficult. Between pain, disease progression, and heavy medications she is a shell of herself.
I've had tearful conversations with W and F about the potential that their mom, this time, might not get better, like she always has before. My strength gives out as I see hers leave.
Your prayers, love, and affection mean so much to us - keep sending them - but also start sending goodbyes and thanks for all she has been to us. We have been so lucky to have Sarah with us for these 5 years post-diagnosis. She has been an absolute inspiration to me, to her children, to the world. Her fire burns bright still, but it's deep inside, and the spark is fading. If anyone can still beat the odds it is her. But this will be a monumental challenge, as her body and mind are failing her.
I am so scared. love you all so much.
Husband Will here. I wanted to offer thanks and also give you all an update on Sarah. While you are here please revisit some of her amazing words from recent months. She is a light like no other I know.
The benefit was amazing, so much love and generosity. Thanks to family, friends, friends of friends... it was a beautiful afternoon, our family was strengthened by your company, and our ability to fight this disease was boosted through your purchases and donations. I sincerely wish I could send you all individual thanks but this is the best I can muster right now. It means so much to Wylie, Finley, and I that you care so much about their mom.
Subsequent to the benefit, Sarah was ruled out of one clinical trial at Bethesda. She was too much of an outlier towards the results the researchers were seeking. Unfortunately success of trials and money to be gained via pharmaceuticals is a huge factor in being selected for these potentially lifesaving opportunities. We remained in touch with the network and were hopeful to be selected for another promising trial. After going through required tests, prodding, and lab works Sarah was ineligible due to a single lab result. As you can imagine this was devastating for us.
We turned to our holistic doctor to help us design our own defense. Sarah's knowledge of studies and perseverance in staying up to date with the latest papers and research was a huge benefit towards this process. We started on aggressive measures to slow progression.
All of the above was only during the course of the two weeks following the benefit event. During this time we enjoyed a beautiful weekend in Pentwater with her parents and siblings - she even made it into the 50 degree water with a wetsuit. Mobility was not easy (beaches + wheel chairs do not mix well) but it worked out.
Also, Sarah proudly turned in her 3-year Prius lease - she had worried it would be her last car when we put pen to paper in 2015. She drove home with a new model, and a boost - she was going to beat this, and this also would NOT be her last car.
She was able to attend Finley's end of school year orchestra concert (amazing!), enjoyed back to back days of backyard barbecue fun with friends in Ann Arbor and Dexter, and was plotting our next moves in beating this disease.
On June 5, the pain in her hip became extreme, and we took her to UM Hospital. X-ray was inconclusive but an MRI revealed a fracture in her pelvis. She was admitted, and stayed for 4 days.
Per her team of physicians, she is looking at a probably 6-month healing period for her hip. With every transfer and movement there is a bit of danger. But Sarah was so happy to not be on bedrest, to still have a small degree of freedom.
In the past week, and particularly the past few days, her condition has rapidly deteriorated. We are waiting on reading of a scan done Friday to learn if there is any information that the doctors can provide about her prognosis. While hope and optimism are always our objectives this outlook is becoming increasingly difficult. Between pain, disease progression, and heavy medications she is a shell of herself.
I've had tearful conversations with W and F about the potential that their mom, this time, might not get better, like she always has before. My strength gives out as I see hers leave.
Your prayers, love, and affection mean so much to us - keep sending them - but also start sending goodbyes and thanks for all she has been to us. We have been so lucky to have Sarah with us for these 5 years post-diagnosis. She has been an absolute inspiration to me, to her children, to the world. Her fire burns bright still, but it's deep inside, and the spark is fading. If anyone can still beat the odds it is her. But this will be a monumental challenge, as her body and mind are failing her.
I am so scared. love you all so much.
Friday, May 11, 2018
JOIN US: Silent Auction Fundraiser
Sunday May 20th, 2018; 1 - 4pm
at the Session Room in Ann Arbor, MI
More info @:
734-780-4241; burns1@gmail.com
- Session Room: 3685 Jackson Rd, Ann Arbor, MI 48103. (734) 585-7300
- Spread the word, invite your friends, children welcome.
- Select food & drinks provided. Full bar & grill menu available. 70+ beers on tap.
- Silent auction includes tickets to events, movies, jewelry, artwork, gift certificates for services, gift cards and more. Raffle and door prizes.
- Pay by: cash, check, credit card, Paypal, or Venmo. Direct donations accepted at paypal.me/helpingsarahburns
- Auction winners announced at 2:30pm; raffle/door prize winners announced at 3pm.
Friday, March 2, 2018
it's March now, I've lost my hair but not my spirit.
I'm breathing a sigh of relief now as I sit in a quiet house, feeling calmed by looking at the heavy snow weighing down the tree limbs and the sun shining through the branches, knowing that at least for today I have no more appointments.
My dad just dropped me off at home after an early morning set of appointments, first a CT scan and then acupuncture. Somehow I was able to roll out of bed and into his car at 6:30a this snowy morning after having had a chemo treatment yesterday. Somedays over the last 2 months this may have proved impossible but somehow today it worked.
Since my last post in mid-January, me and my family have pretty much stayed on the single-minded track of chasing treatments to keep my cancer from growing out of control while at the same time doing our best to keep spirits up as we endure this difficult gray weather part of the winter season. All of us have been barely more than anti-social beyond the necessary interactions and as much as this bums me out because it is not our usual modus operandi, it has somehow helped. There are still too many uncertainties and questions to be answered and things to be explained, sometimes it is just easier to let it go unsaid. But that can only last for so long.
So on this sunny morning, I feel that I can give a coherent update. The experimental low-dose chemo that I have been receiving since mid-January has been able to just barely hold-off the disease progression, so the good news is that I am not in that much worse place than I was in early January but the frustrating side of it is that I am not really "better" and the chemo has taken its tolls as it always does. After so many years of this, it is harder for me to counteract all of that, so I'm a bit beaten-down right now but I am not down, not by a long shot.
We continue to work our way towards getting more info on clinical trials and in some cases are starting to take the next steps. It's making our heads swim with so many moving targets at several different institutions, with different departments, and conversations with docs and nurses at different stages, and transfer of hospital records never going as easily as it should (hello...I thought we were in the age of electronic medical records, turns out this is only sort of the case...apparently the computers at X giant hospital in new york can only speak half the language of the computers at X hospital in MI and none of them speak the same language as X hospital at famous university in TN). WTF people.
On top of that the docs at hospitals in our own back yard flip flop back and forth, one day saying they can't do anything more to the next week, someone else seeing my case (because we bargained or harassed them to look at it) and saying that maybe they can actually help but we might have to decide fast with little time for consideration of the impact it might have on other irons we have in the fire. It is totally mind boggling.
Meanwhile the ups and downs of how my body feels vary so much from day to day that I can't find reliable patterns. So I am kind of stuck in limbo. I am not teaching yoga right now and I miss that tremendously. And I am not really doing much of anything that my "normal" self would consider useful. As counter-intuitive as this is for me and my personality, I am not really going to do anything about it right now because I can see so many wheels turning all around me with all the possible treatment timelines that I seriously have little idea what next week's schedule will look like let alone next month's. For now, getting this bi-weekly low dose chemo is still the focus until something better comes up or it stops working, either way it's impossible to guess when that will be.
Every message, email, card, and financial donation I have received in the past 6 weeks has meant so incredibly much to me. The love and generosity that so many of you expressed is overwhelming and uplifting. You have helped make it possible for me to afford the chemo that has gotten me through the last few weeks. You have helped me keep my heart fire lit even when it felt like I was trying to stoke flames from a crappy little pile of ash. Thank you all tremendously. In time, I will respond to you each personally as soon as I can. Just know you have helped so much already.
Next steps that I know right now are to get some exercise this weekend so that what's left of my muscles don't get completely eaten by my body (and the stupid cancer), meditate on all the things, try to do get thru some yoga flows at home, remember to go get blood draw tmrw morning, have some fun this weekend with the kids, lots of hugging my husby and boys, hang out with my sister who is on vaca from work next week, drink lots of green juice and protein shakes (gah) to be ready for next week's chemo on tues & fri, then acupuncture mon & wed, and meeting with new radiation oncologist on thursday. And about 20 phone calls about clinical trials, and don't forget helping husband to get kids to and from soccer, lacrosse, karate, and music....and did someone also say something about figuring out how to expand our recently shrunken family meal selections from pasta and tacos to maybe something more exotic like sloppy joes and rice bowls? jeez.
Much love to all.
My dad just dropped me off at home after an early morning set of appointments, first a CT scan and then acupuncture. Somehow I was able to roll out of bed and into his car at 6:30a this snowy morning after having had a chemo treatment yesterday. Somedays over the last 2 months this may have proved impossible but somehow today it worked.
Since my last post in mid-January, me and my family have pretty much stayed on the single-minded track of chasing treatments to keep my cancer from growing out of control while at the same time doing our best to keep spirits up as we endure this difficult gray weather part of the winter season. All of us have been barely more than anti-social beyond the necessary interactions and as much as this bums me out because it is not our usual modus operandi, it has somehow helped. There are still too many uncertainties and questions to be answered and things to be explained, sometimes it is just easier to let it go unsaid. But that can only last for so long.
So on this sunny morning, I feel that I can give a coherent update. The experimental low-dose chemo that I have been receiving since mid-January has been able to just barely hold-off the disease progression, so the good news is that I am not in that much worse place than I was in early January but the frustrating side of it is that I am not really "better" and the chemo has taken its tolls as it always does. After so many years of this, it is harder for me to counteract all of that, so I'm a bit beaten-down right now but I am not down, not by a long shot.
We continue to work our way towards getting more info on clinical trials and in some cases are starting to take the next steps. It's making our heads swim with so many moving targets at several different institutions, with different departments, and conversations with docs and nurses at different stages, and transfer of hospital records never going as easily as it should (hello...I thought we were in the age of electronic medical records, turns out this is only sort of the case...apparently the computers at X giant hospital in new york can only speak half the language of the computers at X hospital in MI and none of them speak the same language as X hospital at famous university in TN). WTF people.
On top of that the docs at hospitals in our own back yard flip flop back and forth, one day saying they can't do anything more to the next week, someone else seeing my case (because we bargained or harassed them to look at it) and saying that maybe they can actually help but we might have to decide fast with little time for consideration of the impact it might have on other irons we have in the fire. It is totally mind boggling.
Meanwhile the ups and downs of how my body feels vary so much from day to day that I can't find reliable patterns. So I am kind of stuck in limbo. I am not teaching yoga right now and I miss that tremendously. And I am not really doing much of anything that my "normal" self would consider useful. As counter-intuitive as this is for me and my personality, I am not really going to do anything about it right now because I can see so many wheels turning all around me with all the possible treatment timelines that I seriously have little idea what next week's schedule will look like let alone next month's. For now, getting this bi-weekly low dose chemo is still the focus until something better comes up or it stops working, either way it's impossible to guess when that will be.
Every message, email, card, and financial donation I have received in the past 6 weeks has meant so incredibly much to me. The love and generosity that so many of you expressed is overwhelming and uplifting. You have helped make it possible for me to afford the chemo that has gotten me through the last few weeks. You have helped me keep my heart fire lit even when it felt like I was trying to stoke flames from a crappy little pile of ash. Thank you all tremendously. In time, I will respond to you each personally as soon as I can. Just know you have helped so much already.
Next steps that I know right now are to get some exercise this weekend so that what's left of my muscles don't get completely eaten by my body (and the stupid cancer), meditate on all the things, try to do get thru some yoga flows at home, remember to go get blood draw tmrw morning, have some fun this weekend with the kids, lots of hugging my husby and boys, hang out with my sister who is on vaca from work next week, drink lots of green juice and protein shakes (gah) to be ready for next week's chemo on tues & fri, then acupuncture mon & wed, and meeting with new radiation oncologist on thursday. And about 20 phone calls about clinical trials, and don't forget helping husband to get kids to and from soccer, lacrosse, karate, and music....and did someone also say something about figuring out how to expand our recently shrunken family meal selections from pasta and tacos to maybe something more exotic like sloppy joes and rice bowls? jeez.
Much love to all.
Saturday, January 20, 2018
2018 begins, I wonder will I see it end?
The new year is young but instead of thinking about resolutions, "new me's" or new projects, or spring-cleaning, I am counting my blessings repeatedly throughout the day and seriously wondering if I will get to see the end of this year.
My cancer journey started back in mid-2013. It has asked me to give up and change so much in my life, it has introduced me and my family to experiences and ideas we did not expect. It continues to do this. However the one thing that has been my single focus, remains strong as ever....this is my wish to see my children grow up and to be their mother in every possible way. Another day, another week, another year. I want it more than anything else.
As much as I wish to write about hopeful things and talk about how lucky I am to still be alive after 4.5 yrs living with stage 4 cancer. How happy I am to be with my husband, children, family, and friends and how thrilled I am that after everything I've been through my body still moves and is relatively strong. I can't stop thinking about and trying to process all of the upsetting and bad news that my doctors have given me over the last few weeks.
It is difficult for me to talk about all of this in person and repeatedly, so I've written this post to update you. I'm not saying that I don't want to talk about my cancer with friends and family or want to pretend it's not happening. I am not interested in hiding my story from anyone who may care or who I might be able to help through my own experience. So please feel free to email me directly or to pass this blog link on to other friends and family who would like an update. I'm just being honest that sometimes, it is hard for me to talk about and the blog helps me say it and share it, all in one place.
No matter what, please know that I am deeply thankful in advance for all of your support....now and over the past few years. I am always glad to hear from any or all of you. If you send a kind email or card or donation by paypal or in the mail.....know that my heart bursts with appreciation. If I don't respond by email or facebook in a timely manner, please know that I'll be in touch as soon as I can. Things can get crazy juggling lots of doc appts with various treatment side-effects and a husband+2 kids to hug all the time.
OK now for the short and the long story.....choose your own adventure.
The short story is that since late October 2017 my disease went into overdrive and started progressing quickly. In November I went back on a strong type of chemo that has worked for me in the past. However the lab results and scans from late December showed that my cancer has now developed resistance to that chemo.
Several of my oncologists have recently told me that there are no longer good or reliable options for controlling my cancer. So I am in a rather frantic search for clinical trials that I can qualify for and I am begging all of my doctors to work with me as much as possible, even when that means grasping at straws and thinking outside the box (sometimes, way outside the box).
It usually takes 4-16 weeks to search/sort, get registered, and to start a clinical trial. During this time, if left untreated, my cancer will continue to do damage pushing me closer to the end game. So in the mean time, me and my family decided that I must try to do something to slow down the disease in hopes of buying time and helping me feel better (the symptoms of the progressing disease are not pleasant).
So I've started some experimental treatments and medicines from my integrative MD and my chinese med doc. I'm getting regular labs done to track whether it is helping. We are trying to remain hopeful while still very focused on finding more powerful meds through clinical trials.
These treatments are significant out of pocket expenses to the tune of several thousand per week as our insurance does not cover treatments that are not performed in the hospital. And once a clinical trial is found, there will be more out of pocket procedures, travel and possibly lengthy stays out of town will be required.
In the coming weeks, my family & friends will be putting together some fundraisers for me and my family. Once we know more details of the current and upcoming financial need, we will let everyone know about online crowdfunding campaigns or events. In the mean time, if you have the means to help financially or know someone who does, please visit the section at the top of this blog "How can you help"? to get info on how to donate.
For those interested. The longer, more detailed story is as follows.
This is year 5 living with this disease. I have already outlived most of the predictions but still, I want more. During this time, I have been in cancer treatment continuously. No remission, no "NED" (no evidence of disease", maybe some brief weeks or a month or 2 of stable disease. No chance to take a break from some kind of treatment. I am tired. I need a break. I want "my life" back. Instead I wake every morning and do my best to renew and tend the heart fire that will pull me through another day.
I did not choose this path. I had other plans. Since my diagnosis I've let go piece by piece, most of those plans and dreams. In their place, I've developed new hopes and possibilities that are less tied to any ideas of certainty or future. Yet these mean no less to me than the former. I am not doing this hard work for myself. It's about something bigger.
In the midst of all of this treatment and frustration, I have lived well and happily. I have been given the gifts of seeing so many milestones in my children's and family's lives achieved. Babies born, science fair projects made, goals scored, raises obtained, retirements and weddings celebrated, and marvelous travels experienced. I have made many new friends and lost touch with many old friends. Life has gone on. Every new springtime that I have seen since my diagnosis has thrilled me no less and maybe more than I thought possible. Every moment I have appreciated deeply. I have suffered, I have grieved, I have been in awe, I have been thrilled. I have let go. I have held tight.
For the sake of clarity and so there is no confusion, I will be blunt here. This is difficult to put into writing but I want my friends, neighbors, and family to know where I'm at with this and what is going on. The next few months will be really challenging and scarey as I try to pull through a dangerous progression in my disease.
It's hard for me to repeatedly explain my status and the situation on a one on one basis because it is very upsetting and pushes me to focus on something that makes me sad and not the fact that I am have a conversation with someone who is special to me. Also my condition and where I am at with various medicines or treatments is constantly, sometimes suddenly changing based on lab results and exams. It is too hard for me to keep everyone updated on a regular basis. No matter what though, you can trust, for the forseeable future, I will be in some sort of treatment.
I currently have numerous tumors in my lungs, at least one in my left hip bone, and several in my liver with my liver function being increasing challenged by the growing tumor burden. I am incredibly lucky that as of now there is no sign of disease in my brain or spinal cord. The tumors in my lungs are slow growing and for now, not affecting my breathing but they do increase my susceptibility to infection. The tumor in my hip bone is a problem as it will eventually affect walking and cause pain so I am now receiving a series of radiation treatments to my hip. The tumors in my liver are the most dangerous and the fastest growing. These are the tumors that sap the life of cancer patients and that kill. These are the tumors that must be controlled in order for me to live longer.
Blood test results and CT scans from mid December show that since October 2017, my disease has progressed quickly, likely due to the development of resistance to the few chemotherapy drugs that have been most effective for me over the years. This also comes after 2 experimental treatments that I received in March-May 2017, including a clinical trial with a newly developed immunotherapy drug and internal radiation via radioactive microspheres that were injected directly into my liver tissue.
I currently have several different clinicians that I see on a regular basis including, a radiation and medical oncology team at Univ of Mich, another radiation and oncology team in Nashville TN, an integrative & holistic MD in Ann Arbor with oncology resources, and a Traditional Chinese Medicine doctor based in Ann Arbor and China with oncology resources. I also have relationships or connections to with clinicians who specialize in using experimental drugs and clinical trials. Also the genetics and genomics (the unique fingerprint) of my very own cancer has been sequenced and analyzed thoroughly. It has revealed numerous mutations and other signatures but none of these are what the doctors call "actionable targets" meaning that currently there are no drugs available or known to block or reverse one or more of "my" cancer's mutations.
A lack of doctors and specialists is not my problem. The problem is that once a cancer patient becomes resistant to 1st, 2nd, or 3rd line chemo options and once the function of key organs in the body are affected, there are few options to keep the cancer from growing and killing. The much discussed options of clinical trials are wonderful in theory however in reality they are very difficult to qualify for and can take weeks to months to get registered and then actually receive a drug. This does not work when the patient only has weeks to months to live. And all of this is assuming that the patient can even find a clinical trial at some hospital, somewhere that is testing drugs or procedures that have a reasonable chance for working for their cancer.
Today there exists a variety of options to kill mine and other people's advanced cancers. This includes experimental drugs, combinations of new drugs and procedures, cancer-killing viruses, and hand-made personalized fighting immune cells. Some of this is still in research labs, some only tested in cells or animals, some in human clinical trials, some being tried for one cancer and not another. It is possible that one, and more likely, a combination of these new things could help me. It is possible, maybe even probable that there are drugs and procedures being used in other countries that could help me. But how do I do this? How do I get access to drugs & treatments that the FDA says I can not have? How do I find the right oncologist who is creative and daring and able to work with me to devise a drug combination that might work, and then "got to bat" for me to convince the researchers and other clinicians to take a chance? How do I pay for the drugs, procedures, housing, and travel?
Even if I could figure all of this out.....the biggest question I ask myself is how can I trade all of the time it takes to do this for the loss of that same time with my children? My 2 boys (now 6 and 11yrs) are the shining stars of my life. My dharma, my reason for breath. So how can I spend time and focus on anything else?
It would make sense to trade 4 weeks in a far-away hospital if I am receiving a life saving drug or procedure, maybe those 4 weeks are the 1st 4 weeks of the rest of my life as a healthier woman. BUT on the other hand those 4 weeks could be 4 weeks of the last 16 weeks of my life.....I can not know ahead of time if it is 1 or the other. How does one decide something like this?
In spite of my disease and everything that it has taken from me and everything that it has taught me and shown me. I know that I AM NOT DONE. I have so much more to do. I have surfed these waves and rolled with the punches. When one opportunity became blocked from me, I found another. I am determined to keep this up. As my disease has progressed and the number of different treatments I have received has increased, more and more of the clinicians and practitioners have begun turning away, saying that there is little or nothing that they can offer me. So now I am on a hunt for doctors who are willing to take chances with special patients. I am one of those special patients...I am strong and I still have energy and hope and so much will to live. But the process of finding these few doctors in a world of naysayers is not easy. And I must do it quickly because the cancer is ever marching forward, blind to what I want and blind to my search for help.
I want to celebrate my childrens' and my family's and my friends' achievements and special occasions. I want to plan exciting vacations and small adventures to keep spirits up during the gray winter and early spring. I want to organize a dinner party or a brunch and invite people whose smiling faces, I miss seeing more often. I want to arrange workshops about happy things like self care and essential oils. I want to say "yes" I can teach that class, and "yes" I can pay that registration fee for a yoga training. And "yes" I have time to work on the books I am writing, and "yes" I can finish that online class I started 4 months ago....and "yes" that retail space for rent on Ashley St. looks like the perfect place for the Align Botanica shop, the one that me and my sisters and mom and husband have been dreaming of. The one that will be filled with green plants, the smell of tea and candles, and welcoming customers to hope and possibility and discovery of more wellness in their lives.
That is a lot of "wanting".....and I've always been very good at transferring "wants" into "do's" and getting things done. Moving forward, jumping hurdles, diving into projects and relationships, fully engaging with people and life.
Yet, for now, today I must concentrate instead on the "needs" not the wants. I need to continue to call my doctors, leave messages that may or may not be returned, send half-crazed, half-rational emails to clinicians I have never met and to researchers who may never read the email. I need to haul my self to another radiation treatment and then acupuncture and then maybe a stop at the integrative med doc for something or a blood draw at a local lab then come home and take more than a handful of pills, and somehow ignore the fatigue and not crawl into bed because I have kids to pick-up from school and dinner to make and people to hug. I need to search google and clinicaltrials.gov and try to sort through all of the studies, read the ways that the clinicians will need to control and parse drug access, learn what small indecencies and bigger tortures will be required, then scan the eligibility requirements, then breathlessly read the disqualifying requirements....holding my breath, hoping I don't see something that automatically blocks me from even considering the proposed treatment.
Today, I need to look into my mother's eyes. I'll see a kind of desperation reflected back at me. Is it my own or hers? Does it matter? We are both locked in this. Tonight I need to look into the eyes of my husband and partner. I'll see desperation there too, and loss, and fear, and desire....desire for what we've had, what we could have had, what we both wish we had. It is so bittersweet. We are so thrilled with our life in some ways but so much of the joy and possibility has been sapped by what is happening.
Today, I need to kiss, hug, squeeze, and smell my children. Inhaling their scent, feeling the vibrancy of their young, soft, lively bodies. Their crazy morning hair, one kid looking like a young Robert Smith from the band the Cure, with a kind of wild, ferocity pumping through his veins begging me to let him stay home from school, and the other kid just coming out of the shower looking like some kind of wet floppy puppy version of Pig Pen from Charlie Brown. How I love them both so much. So very very much. How I want so desperately to see this sight every morning and to watch it evolve as they get older. Will they embrace their inner fire or shy away from it? Will they feed off the flames or simply stand by and watch it burn?
Send me prayers and good vibes. Take a moment to find thanks for your own beautiful life. Take a deep breath and feel the suffering in your own body mixing with the joy of being able to take another breath. Close your eyes and try to remember the last grand sunrise you saw, the pinks and purples, reds, and oranges, mixing and shifting into grays and blues, yellow and mist. Let a gentle smile come onto your face and soften and relax your forehead and your jaw.
This is life. It is a wonder.
My cancer journey started back in mid-2013. It has asked me to give up and change so much in my life, it has introduced me and my family to experiences and ideas we did not expect. It continues to do this. However the one thing that has been my single focus, remains strong as ever....this is my wish to see my children grow up and to be their mother in every possible way. Another day, another week, another year. I want it more than anything else.
As much as I wish to write about hopeful things and talk about how lucky I am to still be alive after 4.5 yrs living with stage 4 cancer. How happy I am to be with my husband, children, family, and friends and how thrilled I am that after everything I've been through my body still moves and is relatively strong. I can't stop thinking about and trying to process all of the upsetting and bad news that my doctors have given me over the last few weeks.
It is difficult for me to talk about all of this in person and repeatedly, so I've written this post to update you. I'm not saying that I don't want to talk about my cancer with friends and family or want to pretend it's not happening. I am not interested in hiding my story from anyone who may care or who I might be able to help through my own experience. So please feel free to email me directly or to pass this blog link on to other friends and family who would like an update. I'm just being honest that sometimes, it is hard for me to talk about and the blog helps me say it and share it, all in one place.
No matter what, please know that I am deeply thankful in advance for all of your support....now and over the past few years. I am always glad to hear from any or all of you. If you send a kind email or card or donation by paypal or in the mail.....know that my heart bursts with appreciation. If I don't respond by email or facebook in a timely manner, please know that I'll be in touch as soon as I can. Things can get crazy juggling lots of doc appts with various treatment side-effects and a husband+2 kids to hug all the time.
OK now for the short and the long story.....choose your own adventure.
The short story is that since late October 2017 my disease went into overdrive and started progressing quickly. In November I went back on a strong type of chemo that has worked for me in the past. However the lab results and scans from late December showed that my cancer has now developed resistance to that chemo.
Several of my oncologists have recently told me that there are no longer good or reliable options for controlling my cancer. So I am in a rather frantic search for clinical trials that I can qualify for and I am begging all of my doctors to work with me as much as possible, even when that means grasping at straws and thinking outside the box (sometimes, way outside the box).
It usually takes 4-16 weeks to search/sort, get registered, and to start a clinical trial. During this time, if left untreated, my cancer will continue to do damage pushing me closer to the end game. So in the mean time, me and my family decided that I must try to do something to slow down the disease in hopes of buying time and helping me feel better (the symptoms of the progressing disease are not pleasant).
So I've started some experimental treatments and medicines from my integrative MD and my chinese med doc. I'm getting regular labs done to track whether it is helping. We are trying to remain hopeful while still very focused on finding more powerful meds through clinical trials.
These treatments are significant out of pocket expenses to the tune of several thousand per week as our insurance does not cover treatments that are not performed in the hospital. And once a clinical trial is found, there will be more out of pocket procedures, travel and possibly lengthy stays out of town will be required.
In the coming weeks, my family & friends will be putting together some fundraisers for me and my family. Once we know more details of the current and upcoming financial need, we will let everyone know about online crowdfunding campaigns or events. In the mean time, if you have the means to help financially or know someone who does, please visit the section at the top of this blog "How can you help"? to get info on how to donate.
For those interested. The longer, more detailed story is as follows.
This is year 5 living with this disease. I have already outlived most of the predictions but still, I want more. During this time, I have been in cancer treatment continuously. No remission, no "NED" (no evidence of disease", maybe some brief weeks or a month or 2 of stable disease. No chance to take a break from some kind of treatment. I am tired. I need a break. I want "my life" back. Instead I wake every morning and do my best to renew and tend the heart fire that will pull me through another day.
I did not choose this path. I had other plans. Since my diagnosis I've let go piece by piece, most of those plans and dreams. In their place, I've developed new hopes and possibilities that are less tied to any ideas of certainty or future. Yet these mean no less to me than the former. I am not doing this hard work for myself. It's about something bigger.
In the midst of all of this treatment and frustration, I have lived well and happily. I have been given the gifts of seeing so many milestones in my children's and family's lives achieved. Babies born, science fair projects made, goals scored, raises obtained, retirements and weddings celebrated, and marvelous travels experienced. I have made many new friends and lost touch with many old friends. Life has gone on. Every new springtime that I have seen since my diagnosis has thrilled me no less and maybe more than I thought possible. Every moment I have appreciated deeply. I have suffered, I have grieved, I have been in awe, I have been thrilled. I have let go. I have held tight.
For the sake of clarity and so there is no confusion, I will be blunt here. This is difficult to put into writing but I want my friends, neighbors, and family to know where I'm at with this and what is going on. The next few months will be really challenging and scarey as I try to pull through a dangerous progression in my disease.
It's hard for me to repeatedly explain my status and the situation on a one on one basis because it is very upsetting and pushes me to focus on something that makes me sad and not the fact that I am have a conversation with someone who is special to me. Also my condition and where I am at with various medicines or treatments is constantly, sometimes suddenly changing based on lab results and exams. It is too hard for me to keep everyone updated on a regular basis. No matter what though, you can trust, for the forseeable future, I will be in some sort of treatment.
I currently have numerous tumors in my lungs, at least one in my left hip bone, and several in my liver with my liver function being increasing challenged by the growing tumor burden. I am incredibly lucky that as of now there is no sign of disease in my brain or spinal cord. The tumors in my lungs are slow growing and for now, not affecting my breathing but they do increase my susceptibility to infection. The tumor in my hip bone is a problem as it will eventually affect walking and cause pain so I am now receiving a series of radiation treatments to my hip. The tumors in my liver are the most dangerous and the fastest growing. These are the tumors that sap the life of cancer patients and that kill. These are the tumors that must be controlled in order for me to live longer.
Blood test results and CT scans from mid December show that since October 2017, my disease has progressed quickly, likely due to the development of resistance to the few chemotherapy drugs that have been most effective for me over the years. This also comes after 2 experimental treatments that I received in March-May 2017, including a clinical trial with a newly developed immunotherapy drug and internal radiation via radioactive microspheres that were injected directly into my liver tissue.
I currently have several different clinicians that I see on a regular basis including, a radiation and medical oncology team at Univ of Mich, another radiation and oncology team in Nashville TN, an integrative & holistic MD in Ann Arbor with oncology resources, and a Traditional Chinese Medicine doctor based in Ann Arbor and China with oncology resources. I also have relationships or connections to with clinicians who specialize in using experimental drugs and clinical trials. Also the genetics and genomics (the unique fingerprint) of my very own cancer has been sequenced and analyzed thoroughly. It has revealed numerous mutations and other signatures but none of these are what the doctors call "actionable targets" meaning that currently there are no drugs available or known to block or reverse one or more of "my" cancer's mutations.
A lack of doctors and specialists is not my problem. The problem is that once a cancer patient becomes resistant to 1st, 2nd, or 3rd line chemo options and once the function of key organs in the body are affected, there are few options to keep the cancer from growing and killing. The much discussed options of clinical trials are wonderful in theory however in reality they are very difficult to qualify for and can take weeks to months to get registered and then actually receive a drug. This does not work when the patient only has weeks to months to live. And all of this is assuming that the patient can even find a clinical trial at some hospital, somewhere that is testing drugs or procedures that have a reasonable chance for working for their cancer.
Today there exists a variety of options to kill mine and other people's advanced cancers. This includes experimental drugs, combinations of new drugs and procedures, cancer-killing viruses, and hand-made personalized fighting immune cells. Some of this is still in research labs, some only tested in cells or animals, some in human clinical trials, some being tried for one cancer and not another. It is possible that one, and more likely, a combination of these new things could help me. It is possible, maybe even probable that there are drugs and procedures being used in other countries that could help me. But how do I do this? How do I get access to drugs & treatments that the FDA says I can not have? How do I find the right oncologist who is creative and daring and able to work with me to devise a drug combination that might work, and then "got to bat" for me to convince the researchers and other clinicians to take a chance? How do I pay for the drugs, procedures, housing, and travel?
Even if I could figure all of this out.....the biggest question I ask myself is how can I trade all of the time it takes to do this for the loss of that same time with my children? My 2 boys (now 6 and 11yrs) are the shining stars of my life. My dharma, my reason for breath. So how can I spend time and focus on anything else?
It would make sense to trade 4 weeks in a far-away hospital if I am receiving a life saving drug or procedure, maybe those 4 weeks are the 1st 4 weeks of the rest of my life as a healthier woman. BUT on the other hand those 4 weeks could be 4 weeks of the last 16 weeks of my life.....I can not know ahead of time if it is 1 or the other. How does one decide something like this?
In spite of my disease and everything that it has taken from me and everything that it has taught me and shown me. I know that I AM NOT DONE. I have so much more to do. I have surfed these waves and rolled with the punches. When one opportunity became blocked from me, I found another. I am determined to keep this up. As my disease has progressed and the number of different treatments I have received has increased, more and more of the clinicians and practitioners have begun turning away, saying that there is little or nothing that they can offer me. So now I am on a hunt for doctors who are willing to take chances with special patients. I am one of those special patients...I am strong and I still have energy and hope and so much will to live. But the process of finding these few doctors in a world of naysayers is not easy. And I must do it quickly because the cancer is ever marching forward, blind to what I want and blind to my search for help.
I want to celebrate my childrens' and my family's and my friends' achievements and special occasions. I want to plan exciting vacations and small adventures to keep spirits up during the gray winter and early spring. I want to organize a dinner party or a brunch and invite people whose smiling faces, I miss seeing more often. I want to arrange workshops about happy things like self care and essential oils. I want to say "yes" I can teach that class, and "yes" I can pay that registration fee for a yoga training. And "yes" I have time to work on the books I am writing, and "yes" I can finish that online class I started 4 months ago....and "yes" that retail space for rent on Ashley St. looks like the perfect place for the Align Botanica shop, the one that me and my sisters and mom and husband have been dreaming of. The one that will be filled with green plants, the smell of tea and candles, and welcoming customers to hope and possibility and discovery of more wellness in their lives.
That is a lot of "wanting".....and I've always been very good at transferring "wants" into "do's" and getting things done. Moving forward, jumping hurdles, diving into projects and relationships, fully engaging with people and life.
Yet, for now, today I must concentrate instead on the "needs" not the wants. I need to continue to call my doctors, leave messages that may or may not be returned, send half-crazed, half-rational emails to clinicians I have never met and to researchers who may never read the email. I need to haul my self to another radiation treatment and then acupuncture and then maybe a stop at the integrative med doc for something or a blood draw at a local lab then come home and take more than a handful of pills, and somehow ignore the fatigue and not crawl into bed because I have kids to pick-up from school and dinner to make and people to hug. I need to search google and clinicaltrials.gov and try to sort through all of the studies, read the ways that the clinicians will need to control and parse drug access, learn what small indecencies and bigger tortures will be required, then scan the eligibility requirements, then breathlessly read the disqualifying requirements....holding my breath, hoping I don't see something that automatically blocks me from even considering the proposed treatment.
Today, I need to look into my mother's eyes. I'll see a kind of desperation reflected back at me. Is it my own or hers? Does it matter? We are both locked in this. Tonight I need to look into the eyes of my husband and partner. I'll see desperation there too, and loss, and fear, and desire....desire for what we've had, what we could have had, what we both wish we had. It is so bittersweet. We are so thrilled with our life in some ways but so much of the joy and possibility has been sapped by what is happening.
Today, I need to kiss, hug, squeeze, and smell my children. Inhaling their scent, feeling the vibrancy of their young, soft, lively bodies. Their crazy morning hair, one kid looking like a young Robert Smith from the band the Cure, with a kind of wild, ferocity pumping through his veins begging me to let him stay home from school, and the other kid just coming out of the shower looking like some kind of wet floppy puppy version of Pig Pen from Charlie Brown. How I love them both so much. So very very much. How I want so desperately to see this sight every morning and to watch it evolve as they get older. Will they embrace their inner fire or shy away from it? Will they feed off the flames or simply stand by and watch it burn?
Send me prayers and good vibes. Take a moment to find thanks for your own beautiful life. Take a deep breath and feel the suffering in your own body mixing with the joy of being able to take another breath. Close your eyes and try to remember the last grand sunrise you saw, the pinks and purples, reds, and oranges, mixing and shifting into grays and blues, yellow and mist. Let a gentle smile come onto your face and soften and relax your forehead and your jaw.
This is life. It is a wonder.
Friday, April 21, 2017
Status update April 2017
I never know what to call these kinds of posts....status update? update on life situation, condition, treatment, disease, feelings, mood, family, health?....I don't know....I guess it's all of it.
The truth is that all of this is difficult for me to discuss with or describe to anyone because I increasingly feel that there is a kind of power in turning thoughts into words. I have grown to believe that speaking things can bring them into light and writing things can bring them into material form. Therefore I often find myself silenced. But as much as this is where I am at, I sense that it is not really good for me and not the best way forward. And I care about you and I know that you care about me....and it helps to know what is going on.
Just because I tell you it is hard for me to talk about does not mean that I don't want or appreciate your questions, concerns, or ideas. Also these things going on in my life are overwhelming and scarey and frustrating but I am sure that you have some of that going on in your life too. Everyone does. So please feel to email me or text or call and we can find time to talk. I want to hear from you if you want to chat.
As of today I have been in treatment for this disease for about 45 months. During this time my disease has not remitted or gone away and I have been in treatment the entire time which is common for advanced cancer. In addition to traditional or western medicine, I have used diverse and multiple complimentary treatments and practices to stay well in spite of the rigorous traditional treatments I have received. As part of my treatment, each week I see several different practitioners including integrative docs, nutritionists, chinese med/acupuncture doc, and therapists.
I also teach yoga a few days a week at a local studio and offer private lessons and wellness consulting services to interested people. I continue my training as a yoga teacher and my own studies and am learning Ayurveda (eastern herbalism & nutrition) and traditional western herbalism for my own empowerment but also in hopes of supporting others in their healing journeys. I have been working on developing a small business called Align Botanica that promotes wellness activism and radical self care through workshops and unique hand-crafted all natural products for the body.
Woven between all of that is my children and husband and time with family & friends. Will & I do our best to keep our 2 boys happy and thriving with school, sports, music lessons, and camps. And Will & I try to sneak away for a couple days every few months to try to remember or re-learn who the other person really is.
Since mid March 2017 I have been in an early phase clinical trial testing a combination of 2 experimental drugs and I am not receiving any of the traditional chemo drugs that have previously helped my disease grow more slowly or occasionally stabilize my disease.
The experimental drugs are not chemotherapy that directly kill cancer, instead these drugs try to spur my immune system to rise up and kill the cancer for me. These kinds of new drugs are the only kind that can offer long-term hope for people with advanced cancer. However these new drugs do not always work and they do not often work quickly. Science & medicine is very much still tinkering with these kinds of medicines and do not know the best ways to use these new drugs. The pharmaceutical companies who have invested millions to develop these drugs are keen to get a return on their investment so they have set strict limits on access, timing, method of use, patient eligibility, and whether or not a doctor can prescribe them and what kinds of other treatments a patient can receive while on the experimental drugs.
I have waited since my diagnosis for access to one of these clinical trials. I was finally offered a slot in a trial at my local university hospital so I agreed to do it. However as my disease is not stable or in remission, I knew that I would be taking a risk to stop chemo in order to do the trial. Unfortunately my doctors did not have good advice for me either way, so as it is with most treatment decisions for people with advanced cancer, the decision was left to me and my family.
It has been about 3 months since I last had chemo and 1 month since I started the trial. Sadly my disease is still changing and progressing. It's too early to know if the trial is helping or not and it is looking more likely every week that I will soon need to drop out of the trial to resume traditional chemo and possibly to pursue other treatment options. Even then it is not a guarantee that chemo will slow the disease progression but we are hopeful. And will continue to seek anything that might help and that we can feasibly do.
It's friday afternoon and I just finished teaching a lovely yoga class and picked up the kids from school. It's mild weather so I am going to go forth now and try to have a happy and peaceful weekend. I will save big decisions for sunday evening or monday morning as I need to be present with my beautiful family this weekend.
Hugs to you all,
Sarah
The truth is that all of this is difficult for me to discuss with or describe to anyone because I increasingly feel that there is a kind of power in turning thoughts into words. I have grown to believe that speaking things can bring them into light and writing things can bring them into material form. Therefore I often find myself silenced. But as much as this is where I am at, I sense that it is not really good for me and not the best way forward. And I care about you and I know that you care about me....and it helps to know what is going on.
Just because I tell you it is hard for me to talk about does not mean that I don't want or appreciate your questions, concerns, or ideas. Also these things going on in my life are overwhelming and scarey and frustrating but I am sure that you have some of that going on in your life too. Everyone does. So please feel to email me or text or call and we can find time to talk. I want to hear from you if you want to chat.
As of today I have been in treatment for this disease for about 45 months. During this time my disease has not remitted or gone away and I have been in treatment the entire time which is common for advanced cancer. In addition to traditional or western medicine, I have used diverse and multiple complimentary treatments and practices to stay well in spite of the rigorous traditional treatments I have received. As part of my treatment, each week I see several different practitioners including integrative docs, nutritionists, chinese med/acupuncture doc, and therapists.
I also teach yoga a few days a week at a local studio and offer private lessons and wellness consulting services to interested people. I continue my training as a yoga teacher and my own studies and am learning Ayurveda (eastern herbalism & nutrition) and traditional western herbalism for my own empowerment but also in hopes of supporting others in their healing journeys. I have been working on developing a small business called Align Botanica that promotes wellness activism and radical self care through workshops and unique hand-crafted all natural products for the body.
Woven between all of that is my children and husband and time with family & friends. Will & I do our best to keep our 2 boys happy and thriving with school, sports, music lessons, and camps. And Will & I try to sneak away for a couple days every few months to try to remember or re-learn who the other person really is.
Since mid March 2017 I have been in an early phase clinical trial testing a combination of 2 experimental drugs and I am not receiving any of the traditional chemo drugs that have previously helped my disease grow more slowly or occasionally stabilize my disease.
The experimental drugs are not chemotherapy that directly kill cancer, instead these drugs try to spur my immune system to rise up and kill the cancer for me. These kinds of new drugs are the only kind that can offer long-term hope for people with advanced cancer. However these new drugs do not always work and they do not often work quickly. Science & medicine is very much still tinkering with these kinds of medicines and do not know the best ways to use these new drugs. The pharmaceutical companies who have invested millions to develop these drugs are keen to get a return on their investment so they have set strict limits on access, timing, method of use, patient eligibility, and whether or not a doctor can prescribe them and what kinds of other treatments a patient can receive while on the experimental drugs.
I have waited since my diagnosis for access to one of these clinical trials. I was finally offered a slot in a trial at my local university hospital so I agreed to do it. However as my disease is not stable or in remission, I knew that I would be taking a risk to stop chemo in order to do the trial. Unfortunately my doctors did not have good advice for me either way, so as it is with most treatment decisions for people with advanced cancer, the decision was left to me and my family.
It has been about 3 months since I last had chemo and 1 month since I started the trial. Sadly my disease is still changing and progressing. It's too early to know if the trial is helping or not and it is looking more likely every week that I will soon need to drop out of the trial to resume traditional chemo and possibly to pursue other treatment options. Even then it is not a guarantee that chemo will slow the disease progression but we are hopeful. And will continue to seek anything that might help and that we can feasibly do.
It's friday afternoon and I just finished teaching a lovely yoga class and picked up the kids from school. It's mild weather so I am going to go forth now and try to have a happy and peaceful weekend. I will save big decisions for sunday evening or monday morning as I need to be present with my beautiful family this weekend.
Hugs to you all,
Sarah
Subscribe to:
Posts (Atom)