Science & Medicine

Postcards from the Pandemic

Wish you were here.

What if you walked outside in your flip-flops and drawstring pajamas to check your mail and found your mailbox crammed with colorful postcards from well-wishing friends?  Wouldn’t that disperse some of the 24/7 news cycle pandemic gloom? That was the idea.

It was simple enough.  I missed contact with family and friends and had enough of boneless days and nights that just drifted into early morning.  I wanted to send — and receive — postcards, messages in a bottle — specially from MPN friends, some I had met, others I knew only on-line and others I knew not at all. I wanted to see their faces.

I wanted to know how everyone was doing.  As Sylvia Ross expresses it in her postcard,  I could do with a friendly wave.

These 26 wonderful postcards were the result.  More than a wave, they were a smile, a hug and a lift to my spirit. I hope it does the same for you!  So good to see those faces again!  And their cards say so much about how the corona virus has locked us into isolation.  Messages of courage, hope, despair, loneliness and humor. There’s even a ZOOM concert in there.   Do read them carefully and treasure them,   In each you can read how those of us willing to reach out are coping with an MPN in the heart of a raging pandemic and chaotic times.

And if you were too ill, too tired, too depressed or too oppressed by events of the past five full months to add your own card,  please remember, there’s a better day coming. This will not last forever.

Best of all you can still join in the celebration by responding to any and all postcards. Just drop your note in the COMMENTS box at the end of this piece.

Michelle Woerhle

 

 

 

 

 

 

 

 

 

Being at home, trying to keep the Foundation going and thriving while managing and parenting a 3 and 7 year old and trying to ensure my spouse gets work done as I continue to work towards transitioning out of my role as ED was a shock to the system. I recognized early on that we needed to get outdoors, physically distanced and masked up when necessary, as often as possible. So that’s what we did. When I could find a pocket of time I would get me and the kids to the closest forest preserve. So I hope someday when they remember this time when we were all home and had to wear masks and they couldn’t go into stores or restaurants or playgrounds or play with friends, that they spent a lot of time in the forests. I would encourage anyone and everyone to get outside where they can. And let this also help you reflect on the access to the outdoors you have, and how that looks for others in our country. I hope that helps underline the need to preserve common green spaces and outdoors for all.

As for Netflix rewatching The West Wing is calming. The Last Dance is inspirational. Peaky Blinders is cathartic. The Great is scandalizing. Real Housewives of New York is addictive. Two books by Tomi Adeyemi that are an allegory to the racial stratification in our country masked as magical escapism are not to be missed.
Learning new systems of connection for staff and supporters is something we are all working on while keeping the grants funded and looking toward the future

 

 

Jeremy Smith

 

 

 

 

 

 

 

Many of you who have followed my MPN Journey know that I am big proponent of exercise and diet being added in to the life of every MPN Patient. Other than the medicine you are taking, nothing can have a have bigger impact on your MPN longevity than exercise and diet. Now that I am thirty-one years in this MPN Journey I can say that exercise and diet have changed my life for the better and give me a ton of energy and restored my immune system.

With the gyms and many hiking trails closed due to COVID-19 restrictions what is an exercise nut to do? Actually, there is no reason for you to stop exercising, during COVID-19. You can do a push up routine in the house, purchase a jump rope, run in place, do squats or download an App from the Apple Store with workout programs designed around simple exercises. There are also Yoga Apps and mediation Apps that can help you relax. Even walking just 4K steps a day is very helpful for the human body. And of course, if you have a dog to walk, you can start there. But whatever you do start moving and work your way up to doing this every day. The good news is by exercising, you can help your immune system protect your body more by exercisingthan taking a supplement or drinking orange juice.

There are many options for masks and as you can see from my photograph below I use my mask even when I cycle. When I am out and about and there is no one riding or hiking anywhere near me, I may take the mask off for a few minutes but I can still quickly place it back on. You might also notice in my photograph below that I am wearing an N-95 mask. I have an N-95 mask because when we had the huge California fires we purchased a large number of masks. But I also use an N-95 mask because they are the most effective at eliminating the fogging of sun glasses when equipped with the adjustable nose bridge option. Also, do not forget to put on your sunscreen.

As far as diet, in our home we have reduced our consumption of red meat dramatically. With options from companies like Beyond Meats, which is GMO and Soy Free, you can still enjoy many of the attributes of meat without consuming red meat, and the experience is excellent. By the way Costco has the best pricing on Beyond Meats products and you can usually use Instacart to place an order so you can skip going in to the Costco warehouse. This will leave you more time for exercise. I still do eat some red meat and beef bacon but it must come from local farms, and be hormone free and grass-fed beef only. I also eat a lot of organic eggs, close to two dozen a week. I know that is a lot but I get regular CBC’s and my HDL increases when I eat eggs so it helps with my low HDL. I love eggs because they are an easy source to digest for protein and do not come with all the sugar that is often associated with smoothies.

Since most restaurants are struggling still we order take out when we eat out and then stream. I love streaming Ugly Delicious, Chef’s Table and Chef on Netflix because every time I watch an episode I am reminded of how much I love food. They are also shot in Ultra 4K, which if you have one of the latest greatest Ultra 4K TV’s it’s an amazing experience. On Apple TV I just watched a documentary called Dad’s. A beautiful experience about being a Dad and I highly recommend you see it. On Amazon Prime, I love the police series Bosch and of course the Marvelous Mrs. Maisel.
I am also listening to a lot more music these days through my new Apple Airpods, which Mary Jo purchased for me on my Birthday in April. I also listen to a lot of Podcasts. I highly recommend Marc Maron’s WTF and Conan O’Brien’s “Conan needs a Friend.” They are fascinating podcast interviewers with people from all walks of life and no one is better at interviewing than these two. You will hear stories from people in the entertainment industry you have never heard before. On WTF I highly recommend the interview with the actor Ron Pearlman and on Conan’s podcast his six-part interview series with comedian Dana Carvey will have you on the floor laughing out loud. Let me know what your favorite winds up being. Both Conan and Marc Maron do their own
interviews with Howard Stern and David Letterman that are incredibly good. They are very personal interviews that you will not hear anywhere else.
I love my Apple Watch by the way. I track all of my exercises and heart rate output on a single device and then share the data with my Doctors.
The benefits of a great diet and exercise are that my weight does not usually vary more than a pound or two over a 12-month period and I do not have any fatigue.

Please don’t get me wrong, I understand how tough exercise can be for MPN Patients, but the results and benefits are worth every moment, even during a pandemic. Take care wish you all the best.

 

Richard T. Silver

 

 

 

 

 

Perhaps your readers would like to know that two familiar drugs, ruxlolitinib and interferon are being evaluated in COVID  Rux, because of its anti-inflammatory properties, and interferon because it is antiviral agent. It is our  feeling both drugs should be used  early in the course of the disease.Definite answers pending.

All the best, Dick

(Ed.Note: Something else readers might like to know is Dr. Richard T. Silver is also a world class clarinetist and sponsor of the Cornell Wind Ensemble.)

May 13, 2020 Performance by the Barbara and Richard T. Silver Cornell Wind Symphony.

 

Chris Harper

 

 

 

 

 

 

 

 

 

Well here I am celebrating (?) the start of month five in lockdown. Lesley and I were locked down by two burly policemen (our sons) two days before the UK government made their announcement and nothing much has changed for us since. Although being nine years out I don’t fit the government’s criterion for shielding my doctors surgery did put us on the list. I think they felt that so much was unknown about Covid that having my mixed immune system (thank you Sarah Gardner) might make it a challenge. My doctor recently confirmed this, saying she had no intention of letting me out; we are lucky to have a GP that knows us so well.

We do try to get out once a day. I, and sometimes we, run in the park three or four times a week, up to 10k, but do this early to miss others. However, it is clear that the amount of those taking exercise in the park has increased significantly. I wear a necker that doubles as a mask when I run and pull it up whenever I meet anyone. Consequently it can go up and down like a fiddlers elbow!

We are now adding cycling as we will participate in a solo/virtual 50/100km charity cycle ride in September for Backup (they help inspire people affected by spinal cord injury to get the most out of life) a charity that was heavily supported by my late buddy and good chum Danny Turnbull (we helped each other through SCT). Danny, with his Skiing, water-skiing, hand cycling London to Paris, successful lawyer, married with two boys to name but a few of his accomplishments was a brilliant example and advocate for those embarking on the challenge.. Sadly after a successful SCT he succumbed to a different cancer afterwards. We do it in memory of a wonderful man.

We should have been cruising the Rhine at the moment but that, like our planned trip to the Caucuses in May, was Covid cancelled.

Apart from that we have missed all of our immediate family’s birthdays although covered them with Zoom.  We have not touched our sons, daughter-in-law and one year old granddaughter since March, although we have had a couple of garden visits. We do worry about them as all three are front line police officers.

At home we survive together well as we approach 45 years of marriage.  We shop online.  I have started to cook a couple of times a week, although it’s fairly limited fare it gives Lesley a change. In he past two weeks we have done a few local garden visits with friends who are also shielding.  Never in the field of human contact has so much hand gel/disinfectant etc been used by so few in such a short time.

I look with incredulity at events around the world and just how stupid people can be in their response or disbelief about Covid19. Having worn a mask while travelling post SCT, to me now, it is a no brainer.  Shielding is supposed to finish at the end of the month but I don’t see it changing that much. Sadly I expect a second wave brought on by the stupidity of so many but on the positive side it might improve the gene pool..

I am still buddying whenever required although it seems a quieter period at the moment. I still enjoy keeping in touch with others around the world and in many cases seeing their activities on Facebook.

So my friends and fellow MPN-ers around the world, please take care and do everything that you can to stay safe. It is likely to be a long haul and we all want to get through it

Zhenya Senyak

 

 

 

 

 

 

   I had to struggle writing my postcard.  While determined to be upbeat, to offer some kind of encouragement  to people I care about, it turns out this isolated locked down pandemic life is no walk in the park.  And I often found myself poking along its darker pathways.
Usually, the walk along the actual pathways of local river trails with Dave (my dog) redeems the day. (That’s Henry my truly great Grandson alongside me on the bench; picture taken back in the Good Old Days — Thanksgiving — which accounts for the sweaters and lack of masks on each of us…except Dave who never takes his off.)
And then there’s Elijah, a personal joy and sorrow of this pandemic. Here he is at five or six months painfully exploring the familiar beard of his grandfather.  Within a few months those close-up days would end as the surging corona virus required physical separation, from him and his sisters.  For awhile I could still get some echo of contact giving on-line French lessons to one grand-daughter and piano lessons to another via Google Hangout. It’s just not the same thing as a good solid beard pull and the smell of a baby’s head.
To amuse myself I cook elaborate meals and end up freezing large portions for some vague future event.  I  bake far too many sourdough boules every week; and fight with squirrels that drive my local Cardinal family off the bird feeder. For the record, I do try, unsuccessfully,  to avoid Netflix but often go to bed after midnight regretting the lost time that could have been spent in more productive or creative enterprises.
 In the morning, while commiserating with Bozo (parrot) and Katrina (Cat) over coffee and breakfast,  those regrets vanish.  I review my plan for the day which is mostly chores, garden, writing and oddly empty of human contact.  I might pick up my banjo or play a few pieces on the piano but mostly I listen to the radio and putz around. I find it hard to get down to serious work.
A fringe benefit is my house is cleaner than usual. And my  zucchini patch gets more attention than years past.
I suspect several of our friends are similarly disoriented.  I would probably sink into total torpor except we have  NPR and the BBC News reporting on Trump and the continuing criminal chaos of the White House and the Government to keep the adrenaline pumping.  For all of us, along with our MPNs and the COVID-19 pestilence, politics and social upheaval, economic collapse, a coming election and massive street protests combine to make this a most turbulent time.
I need a long walk.  Where’s Dave? (Be safe, y’all. See you down the road.)

 

Marty Prager

As I started to think about encouragement, and I really like it that the word “courage” is built into the word, I fumbled about with some of my own words until I came across this wonderful thought posted by a good friend. There is no way I could say it better and it works on many levels.
My grandmother once gave me a tip:
In difficult times, you move forward in small steps.
Do what you have to do, but little by little.
Don’t think about the future, or what may happen tomorrow.
Wash the dishes.
Remove the dust.
Write a letter.
Make a soup.
You see?
You are advancing step by step.
Take a step and stop.
Rest a little.
Praise yourself.
Take another step.
Then another.
You won’t notice, but your steps will grow more and more.
And the time will come when you can think about the future without crying.
– Elena Mikhalko

 

 

 

Dr. Ruben Mesa with wife, Kris

 

 

 This has been a crazy time, but also a time of great courage, selflessness, and an assessment of what things in life matter. Myself I have been grateful for the health and safety of my family, friends, co-workers and patients. I have been grateful for the time to really pause and enjoy my family, the lovely Texas Hill Country, and many socially distant outdoor activities.
I know how stressful this period has been for everyone, and how much more so for all of you with an MPN with all the additional burden and uncertainty that brings. Know all of us dedicated to battling MPNs have you in our thoughts and prayers, and are actively working to find the best ways to protect you against COVID19 and if infected the best ways to manage your disease in that setting.
For now stay safe and WEAR YOUR MASKS!

 

Mary Cotter

 

 

 

 

 

 

You may have felt really lousy for sometime now. Perhaps you have been more fatigued than average, maybe you have experienced unrelenting headache, weird eye issues, or you might have had odd tingling sensations in your fingers and toes. You might have complained to your internist and felt like these vague symptoms were ignored, until, that day when your doctor grew concerned with your blood counts, CBC counts, and referred you to a hematologist. That is when you first heard the words myeloproliferative neoplasm, an MPN. What????

I have been on my MPN journey for more than ten years, and honestly, I expect and plan to be on this journey for AT LEAST another twenty five or forty years. Yes indeed, I hope and trust that I will die WITH an MPN at the ripe age of ??? plus years.

It’s possible.

How to cope? MPNs are chronic illnesses, no different than diabetes, lupus, MS, Parkinson’s, or hundreds of other treatable, but incurable disorders. By their nature, chronic illness change our identity and sense of self. We move from an position of invincibility (my life is my own, I have a long future and control my own destiny) to one of vulnerability, fear, and lack of control.

The way to cope with chronic illness is to learn all that you can about the disease process and your individual manifestation of the disease. Accept the disease as a new part of your identity, as one would becoming a grandparent or spouse. Acknowledge that no one is guaranteed a long term lease on this planet. We all must die of something. Determine how you want to live your life between now and dead. How well you cope and the quality of your life will depend entirely upon you.

Be well.

Bonnie Evans

 

 

 

 

Joe has been gone almost 5 years now. During the pandemic, I had ventured into eHarmony.com and met Jack. He is a retired airline pilot who lives about 50 minutes from me. We have developed a fun relationship. It is a joy to share adventures with someone once again.

 

 

Ann Brazeau

 

 

Like all of us who recognize the insanity in the White House and no end in sight, I am doing okay but not great. I haven’t been able to see my daughter and family for seven months.  Several family members had the virus and are all recovered.  They were in several states across the country.  I have good days and low days but remain in regular communication with patients and the MPN Community.
Obviously, we aren’t traveling this year and will not until it is absolutely safe to do so. Our docs cannot and will not travel and of course, we would never bring a large group together in person.
Each week since the pandemic, we have sent out updates and important news to the community. We have videos of MPN experts speaking specifically about the virus and MPNs. We hosted one webinar event online with almost 200 participants.  All was recorded and available on our website. Our next program is September 25th-the 6th Annual Women and MPN program.   Our plan is to host a program online in Oct, Nov, and Dec.  we have fielded hundreds of calls and emails and basically console and direct to resources.
Everything has changed and we adjusted. One thing that has not changed is our commitment to those affected by MPN.  We responded immediately and changed what we needed to so no one needing help didn’t receive it.
Editor note: Photo, Ann at  her 2018
MPN Education & Advocacy meeting 

 

 

Leif Running

 

 

 

 

I live in Portland, Oregon. Yesterday I enjoyed a walk in a nearby park with my wife and dog. I have been to our nearby Kaiser clinic multiple times for labs and phlebotomies during the Covid time, and it has been remarkably easy — the clinic has always been practically empty, and the staff and patients there have been masked and distanced.

During these difficult times, it’s nice to have a diversion.
The Netflix series “Never have I ever..” is great. If you’re old, like me (70), don’t be put off by the fact that it’s about teenagers. It’s funny and insightful for people of all ages

 

 

 

 

 

 

 

 

David Denny

DO NOT BECOME AN MF/COVID-19 ZOMBIE

When I was first diagnosed with primary myelofibrosis I felt very sorry for myself and went through a period of grieving. But by God’s grace I was eventually able to snap out of it. I took a look at what I wanted the rest of my life to be like. I was sure I did not want to be depressed or angry all the time. Instead I found that life is still full of joy and I am determined not to overlook the joy of each and every day.

The COVID-19 pandemic is another big challenge. We were shut down and separated from other people. We must wear masks. (Even my phone doesn’t recognize me.) We are concerned about friends and family. We may be bored out of our minds.

But we have the same challenge as always. We are tempted to be zombies – morose and stupefied. We need to get up, get out and be as active as possible! There are plenty of important and creative things that we can do instead of being zombies. 

Today is supposed to be sunny – so if I get my work done I will go for a ride on my motorcycle this afternoon. But during the COVID excitement I have also weeded and mulched my flowerbeds, fixed my garage door, replaced the switch in my sump pump, learned to make YouTube videos and caught up on my reading.

Ride a bike, fly a kite, cook an omelet, organize your closet! There are rainy day activities and sunny day activities. Make a list and get into action! Don’t let life go by. Live it! Enjoy it to the max! Squeeze all the joy out of today!

 

Julie Libon

 

 

 

 

 

 

 

 

 

 

 

Greetings from high above the George Washington Bridge in Fort Lee, NJ.,

Four months ago, Covid shut down NY and NJ. It was strange times to see an empty bridge, both levels in both directions. I am surrounded by several major airports, a military base and news choppers. The airspace that was once full and noisy, turned silent.

Like so many, work from home became mandatory.  Planning dinner became the major event of the day, for me and my husband. We have had lots of fun cooking meals together, going on walks and getting away from it all with long hikes.
With so much time on our hands, we got the crazy idea to look for a home close to our little granddaughter. I feel like so many in the greater NYC area……it might be time to get out. I am now dreaming of my own house with grass, trees and a yard.
Fortunately, folks here are very serious about wearing masks. My daughter in law made me one out of fabric with a galaxy design. A nice new fashion statement.
Life is not normal, but the bridge and skies are becoming a bit more active. The noise is welcome and surprisingly calming.
I hope you and your families are doing well. Mask up and stay safe.

Ken Young

My neighbours, Josie and John have been putting out a chalkboard every day with a few words of inspiration to encourage people during our second Stage 3 lock-down here in Melbourne, Australia.
This was this mornings quote – “Memories take you back. Dreams take us forward.

Reflecting on their words – I dream of a world where we care for each other and our environment, we take science seriously and we act on our knowledge.

Sending my warmest greetings to the wider MPN world.

 

 

Diane Womack Blackstock

 

 

 

 

 

 

 

 

 

Hoping all are safe, masked and being EXTRA careful.  This will eventually be just a memory.

 

 

 

 

 

Jane Frantz

 

 

Good news and not so good news. My acupuncturist has been closed since early March, so the magic bullet that I had found that kept my HGB and PLT counts up, has been unavailable. I am back to weekly blood labs and Procrit injections.
I was tested for Covid19 a few weeks ago, after having what turned out to be just an intestinal “bug”. It took 5 days for my negative results; during that time, my hematologist arranged to have my injection done in my car in their parking lot. Yay!
I am thankful to have been able to do a lot of walks in parks near my home. I’ve made and donated many masks, and of course wear one when outside.
There are many zoom meetings that allow me to keep up with environmental issues and my local planning board.
Sending my best wishes to all with this rare and confounding disease.

 

 

Sylvia Ross

 

 

 

 

 

 

 

Coping through Lockdown – What Can We Do ?  

To set the scene, we are a childless couple, married for 40 years come September.  A brain haemorrhage brought on by exercise left me with impulsivity so, amongst other things a few years back, I took early retirement, left London and moved 250 miles North. Bang smack in the middle of this, Mike started with his headaches.  He was travelling up and down the  M1 getting our new house ready and one day on arriving back to London, I called an ambulance as he’d had (what we now know to be)  a Bell’s Palsy episode.  

We eventually settled in our new home and following up on Mike’s general feeling of unwellness, a year later MF was diagnosed…that was 9 years ago. 

I mentioned childless… well, we left our lives and friends in London too. This has always proved particularly hard but in lockdown, it hit us hard in that we had no-one to rely on except ourselves.  

Focus in the UK over the last few years has been on loneliness and isolation and early into lockdown it dawned on me… this is what a lot of our citizens have been doing since,  for whatever reasons or what age,  they became housebound. Covid-19 means no change to their often, lonely existence.  A carer who pops in a few times daily perhaps, but with no children one simply has no choice but to get on with it. Even more despairingly, some of our citizens are without the funds or expertise to get online where you find lots of self-help groups and help.   

We liken lockdown as to when you retire, great initially then purpose can go from your life and especially if you’ve no hobbies outside of work or if you don’t have a family to care for or them to care for you.   Friends I conclude help you emotionally but in lockdown not physically.    

Mike was classed “extremely vulnerable” so we initially loved the fact that we could watch Netflix and be totally insular. Watching our government telling us how many had died; we were in our own cocoon and going no place soon.   Mike was scared to go for his hourly outdoor exercise, so we exercised with Jo Wickes and Yoga teacher via You Tube, doing exercises we  remembered from school – Starfish Jumps – they are still called that today! 

We are all different with our likes and dislikes but one thing for sure is,   as human beings, our emotional needs are the same.  We eat, sleep, and need to know we have a purpose in life or are wanted. If we miss out on either, mental health issues in terms of depression can set in.  A “wobble” I called it. 

Lockdown taught me to look after me. If I’m not good, then I’m no good to anyone else.  Mike and I learned to find purpose in helping others, it might only be making an ear saver,  but, it helped someone!   

Mike loves his peace & quiet so was more than happy, and still is, to watch Netflix and Amazon Prime while I was more and more frustrated that I couldn’t be like him, content.  I wanted to learn Spanish, paint, sew, knit and so I did, any local charity needing help I rallied neighbours around on WhatsApp , we stitched scrubs for doctors and nurses,  ear savers for masks , pairs of hearts for those in hospital.. you name it – if it was a call for help on-line, I got involved. Mike was happy to cook and watch TV and still is…

As nothing is changing quickly, our expectations and attitude have to.  We can’t window shopping, go out to eat much, so we are learning to be happy with simple things, taking  joy in Amazon Prime where we found great TV series to binge on, old movies we’d not seen for years, documentaries that we’ve never had time to watch and which are teaching us things we never knew about… 

Take pleasure in eating, going for walks, and saying hello to anyone you pass after a few days, you’ll start striking up conversations.  

Mike and I truly hope you’ve found your,  if not “happy place”, contentment in your new normal.  On our MPN Forum, I can’t offer much medical advice on MPN’s as everyone reacts differently which is exactly what I’m finding with people in their lockdown scenarios.  

If anyone reading this has the energy to set up online support groups in your community, please do it. There is someone out there that have no friends or family who sure can do with a friendly text, call or simply a wave 

If you pass their house.   The thing is with us humans, we don’t like other humans to know we’re lacking in any capacity. Well some are or just maybe in the future. 

Ann Haehn

 

 

 

 

 

 

 

WE GOT THIS!

Who knows how to 1) wash their hands obsessively, 2) wear a mask in public spaces, and 3) social distance? Cancer and stem cell transplant survivors!

Genny knows what it is like to have a wiped out immune system and as a result, how to protect herself. So she, along with our entire family, know how to navigate the COVID-19 pandemic. Since early March, our family has followed stay-at-home orders, drawing a tight, protective circle around Genny and my husband (who has severe cardiac disease). We don’t socialize with anyone who doesn’t follow the exact same protocols we do, so you can imagine our circle has become smaller. While we can’t see all of our family and friends right now, we have adapted to technology.

Yeah for Zoom video–it is a great connector in these strange times. Neither Genny’s husband, Josh, nor I, are essential workers that must put ourselves at risk to financially provide for our family–we can do our jobs remotely, working from home offices. We are in a remarkable and blessed place to be as we hunker down and wait out the COVID-19 storm.

And yet, our mental health was suffering from being so cooped up. So we recently escaped to the mountains for a week, following the same protocols we had in place at home. We got up at 5:45 am to hike empty trails, encountering very few humans but quite a few deer (and even spotted a bald eagle).

Genny still lives with chronic Graft-vs-Host disease and is still adapting to a new metal hip (the result of all the steroids), so she couldn’t do all the hikes, but she did get in some. Meanwhile, we continue our charity outreach to help others, through both the Leukemia and Lymphoma society and Genny’s Hope Foundation.

Additionally, I’ve sewn well over 100 masks (yes, I’m a mask advocate because I know they work). If you need masks, for yourself or loved ones, send an email to me–there is no charge and while the masks I make aren’t N-95 they do offer three layers of protection and include a pouch to insert a coffee filter.

So as we all wait for the miracle drug and/or the vaccine, let us have hope. I can’t thank the medical community enough for all they do to help each and everyone of us. Ending this postcard by sending the entire MPN community healing light.

(Ed/note: Photo: Ann, center, with daughter Genny and Genny’s husband Josh in the background and their daughter,Hannah, right.)

 

Dr. Srdan Verstovsek 

 

 

 

 

 

 

 

 

 

 

 

Dear  MPN patients…Along with the many exciting advancements that we have witnessed lately in MPN treatments, over the past few months we have all also experienced the unprecedented challenges of the Covid-19 outbreak.

As a physician caring for many patients with MPN, I would like to address potential concerns regarding Covid-19 infection. Our general recommendation for MPN patients is to adhere to treatment and management as you did prior to the Covid-19 outbreak and simultaneously, to take all the necessary precautions to minimize exposure to the virus. Despite the higher risk that patients with advanced myelofibrosis, or those with additional, other medical problems (diabetes, obesity, heart problems), may have for complications if they get Covid-19 infection, approach to therapy for MPN should not change. We recommend strict compliance with the disease treatment and management you had prior to the Covid-19 outbreak. As we continue to be at the forefront of clinical research in MPN, the care and safety of our MPN patients remain our top priorities. We are here to serve you all with steadfast dedication, regardless of the challenges, and provide you with leading treatments and care in MPNs. We have maintained outpatient appointments at the MD Anderson Cancer Center. We can also schedule virtual appointments via telemedicine for your convenience and safety or in case you are unable to visit in person.

Me and my family are confined to our home, and supporting each other in these difficult times. Masks, social distancing, and washing hands are the norm. Family games instead of vacation trips. It is A difficult time for kids, in particular, but this is all necessary! 

We hope you all stay safe and well! We send you warm wishes and regards!

 

 

 

Ellen Jacquart 

 

 

 

 

 

 

 

 

 

 

Hi MPNers – it’s been a strange spring and summer, hasn’t it?

I’m a retired botanist and all my hikes/events got cancelled, so I’ve been doing a lot more aimless wandering looking at plants. It’s made me surprisingly happy! I’ve delayed seeing my hematologist for my usual 6 month checkup because I feel great and my counts look good, and because I am avoiding any unnecessary contact at this point.

Here’s to a healthy and good future to all of us!

 

 

 

 

 

 

 

 

 

 

 

 

Charlie and Nathalie Nielsen 

 

 

 

 

 

 

 

Hiking the Root Glacier in Wrangell-St. Elias National Park.
It’s one of the more remote National Parks in the USA, accessible by road.
We drove from Texas with our camper, just prior to going for Stem Cell Transplant

Hi MPN Friends – Greetings from Nathalie and Charlie Nielsen!

I (Charlie) was diagnosed with PMF in December 2010, then treated with Jakafi from September 2011. Jakafi worked well for about 6 years until counts began to drop and the spleen again became palpable. Since no other suitable treatment options were available, we decided to move forward with a stem cell transplant, which took place in October 2018.

In the beginning we were terrified by the initial diagnosis of primary myelofibrosis and scoured the internet for answers. Eventually we found other MPN Patients and support groups who connected us with Dr. Verstovsek at the MD Anderson in Houston, TX. Meeting other MPN Patients/caregivers and Dr. Verstovsek, put our minds at ease and we found ourselves on a new and amazing journey.
We met so many new friends, in various stages of their MPN journey, who freely shared their experiences with us.
We learned the language and science of MPNs, with the help of our friend Zhenya Zenyak and MPN Forum. It still sounds like science fiction; but we know it isn’t!

We did a consult in 2013 with the transplant team, because we had seen friends who left the decision too late and became ineligible for various reasons, or died while waiting.

Even though the transplant team and my MPN specialist felt it was too early, my siblings were tested at the time and my sister was a perfect match and insurance confirmed they would provide coverage. That turned out to be a worthwhile consult.

The SCT decision was really made in the 2016-2017 time frame. We struggled with that for a while; but got to a point where there were really no suitable options other than SCT.
We did not want to do other clinical trials, with unknown outcomes and risk losing that window of opportunity for SCT. We had seen a number of trials that ended with poor results or were suspended for various reasons.

While being carefully monitored, we decided to go traveling when I retired in April of 2017. We sold our house and hit the road, for about 18 months, in our little camper. Dr. Verstovsek, was kind enough to review my labs, that I did in various small towns across the USA. As long as things looked good we continued our travels. The most difficult part was co-ordinating delivery of the Jakafi. Actually the problem was co-ordination of insurance coverage between the insurer and the specialty pharmacy. The rest was a breeze.

During our travels, we returned to Houston for follow-up with the SCT team and became aware that my sister became ineligible as a donor. However the team quickly found a 9/10 matched unrelated donor.

When the transplant started, I was at a good point physically, quite fit, no comorbidities and not transfusion dependent. The transplant was fairly uncomplicated; although there were some bumps in the road along the way(I can share details with anyone interested).
Counts have been slow to recover and I had trouble to consume enough calories to gain weight due to mild GVHD of the upper and lower GI.

I celebrated my 1 year re-birthday in the hospital with pneumonia. That really set me back. But, the wonderful SCT team got a handle on the GVHD and the pneumonia, in short order.

The lost weight and muscle mass began to return. But kidneys took a hit during the whole process.

The great news is that the Myelofibrosis and the JAK2 are gone! My record shows No Evidence of Disease (NED). Kidney function tests have improved nicely after phasing back some transplant related meds. The nephrologist is fairly sure it’s medication related so we will monitor that as I continue to get off the meds.

Last month I started my first round of vaccinations, things are progressing nicely.

Nathalie’s role as caregiver and coach has been key in getting me to this point in our journey. She kept family and friends abreast of my progress during sct, motivated me to exercise when I did not feel up to it, urged me to eat when I had zero appetite, experimented with numerous dishes and supplements to help put some meat on my bones, kept up with the numerous medications and questioned healthcare providers about test results and new symptoms until we understood and were comfortable with the way forward.

Overall life is great! Nathalie and I hope to get back to traveling when conditions improve. COVID-19 has not changed much for us, so far. We have practiced social distancing, and isolation for some time prior. We exercise daily and keep in touch with friends and family, also catching up on all those little things we did not have time for before and we’re giving some TCL to our camper getting it ready for new adventures.
Here we are July 2020, getting our camper ready for new adventures

Some things we have learned along the way, if you have MF
consult a MPN specialist for an accurate diagnosis and suitable treatment options.
Dr. Verstovsek always said go dancing, go fishing, live your life! So glad we took his advice!
exercise is medicine – do what you can; but have a routine
consult a transplant team sooner than later, don’t wait till you really need a SCT only to find out you have no match, are ineligible or your insurance does not provide coverage.
do your homework as to the various treatment options, in consultation with your MPN Specialist, transplant team and family.
evaluate carefully your options. What would your future life look like for each option? None is a 100% guarantee.
once you decide, don’t look back. Keep your eye on the prize and stay positive.
do everything you can to make it a success. It requires a lot of hard work and diligence from you and your caregiver.
expect some rough waters along the way. You’re on an ocean journey, not a fair-weather day trip.

Hope you are all doing well!

Susan Williams

 

 

 

 

 

 

 

 

 

 

 

Because I live alone, social distancing has not been a problem.

I continue to communicate with my family and friends using email and telephone calls.

And, when I do miss seeing faces, I yell at my neighbors from across the street.

 

Avraham Dworsky

 

 

 

 

 

 

 

 

 

 

You only go through life once, so don’t forget to stop and enjoy the flowers.”’

Photo taken a half hour walk from my kibbutz in February.

l hope this finds you well and safe during this hard period.

בשלום ובאהבה

אברהם

 

Helen Iden and husband Doug

 

 

 

 

 

 

 

 

Well it sort outs your true friends. Being locked down for three months and the newest friend is the one who contacts me to find out how I am when family just assume I’m fine. I am a strong woman, life has taught me that I need to be but my Husband and I got depressed during this

We have cheered ourselves up and only another week to go before we can see some family in a bubble.

Hooray!

 

 

 

 

Nathalie Cook

 

 

 

 

 

 

 

 

 

 

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Greetings from Melbourne, Australia to the international MPN community! I hope this message finds you all safe and well as we progress through 2020, the year that our world has been shaken by the awful Covid19 pandemic!

Like many people, I have been using lockdown time to hone my bread making skills. Pictured below are my latest batches – a 5 day fermented organic stone ground spelt and rye loaf with sunflower seed and chia, and a focaccia with fresh rosemary from my garden and olive oil.

Throughout Covid19 I have continued working from my office (as a dietitian), however these days I do Telehealth calls, instead of face to face consults and my regular group presentations have been converted to online video recordings.

As my family are working or studying from home our little dog Cino (pictured) is enjoying plenty of attention, tasty titbits and frequent walks!

Best wishes to everyone in the MPN community and your families. Keep safe and well and wear your masks!

 

 

 

 

 

 

 

 

Beatrice Larroque

 

 

 

 

 

 

 

 

 

Covid-19, quarantine, social injustice, blatant display of selfishness, horrific lack of empathy… 

This is the year I had plans, great plans. I was to travel to England and France in May, I was to travel to Rome and Berlin in August; I was to celebrate my 60th birthday – a birthday I had every reason to believe I would not live to celebrate – dancing the night away with my friends, I was to celebrate my 5th Rebirth Day on October 1st , also dancing the night away with my friends who supported me and carried me during my ordeal. 

2020 was the year.

2020 was the year I was going to fully live my new lease on life.

2020 was it.

And then, it wasn’t.

And the feeling of profound disappointment in humankind, the anger, the rage, started to grow, slowly, a little bit more every day, until it exploded and took over my whole being, and I started to boil with rage, yell at the TV, stay awake most nights, feeling mad as hell, and desperately powerless. 

But then, I took a deep breath, I paused, and I felt ashamed. 

Yes, I am quarantined; 

Yes, I can’t hug my son when he visits; 

Yes, I have to wear a mask, which I gladly do. 

Yes, I feel hopeless at times.

But I cannot, must not, forget all my blessings, all the positive in my life.  So, I started  focusing on the little things over which I have some control. 

I have to wear a mask? Great, let’s have fun with it! I will  get all sorts of different, colorful, fun masks that I can match everyday  with my outfits. Just like when I lost my hair during my SCT and decided to have fun with a tattoo on my head, one of the funnest things I had ever done! 

I spend more time Skyping with my friends. 

Cooking? No, that, I still don’t do, but that’s ok, that’s what frozen meals are for!

But the highlight of my days is taking my (son’s) dog, Evie, for a long walks on the deserted golf course across the street. I go in the early evening when the burning sun is almost setting and the light breeze feels like a cool glass of  lemonade on a hot summer day. While Evie cheerfuly runs around and chases the goffers and the birds, I immerse myself in the serenity of the nature surrounding me. 

I watch a family of heron standing in the pond catching food with their long beak, 

I watch families of ducks swim aimlessly, the duckling behind mom in a straight line in order of size,

I watch huge, black, very talkative crows fly from tree to tree.  

One day, a large flock of white doves flew and danced in formation in front of us; it was a majestic sight and felt strangely hopeful. 

Yesterday, a large owl was quietly sitting on the lawn until it decided we were close enough and flew to the nearby tree to watch us from a safe distance. 

As we make our way back and cross the red bridge over the small pond, I watch the fiery sun set behind the palm trees, igniting the sky with orange, red, purple, and my heart swells and fills with hope again. 

The sun will rise again tomorrow, and with it, a renewed sense of hope. 

Hope, for the end of the pandemic. 

Hope, for remaining healthy.

Hope, for a kinder world. 

Hope.  

Back to Home Page

 

Comments on: "Postcards from the Pandemic" (9)

  1. Fritz Messere said:

    Just loved seeing all the wonderful places and faces in these postcards. My wife (Nola) and I are at our place in the Adirondacks enjoying the beautiful scenery and fresh air….wearing masks and taking all precautions when in town (Old Forge) and hoping that everyone stays safe and sound. Friend me on Facebook to see some of my pictures of the Central Adirondacks.

  2. Marty Prager said:

    So nice to see recent photos of everyone and read the wide variety of stories. Thank you Zhen and everyone else.

  3. Kathy Van Meter said:

    My Heart is smiling as I read these postcards from those who share my journey with me. My husband died of amyloidosis on Christmas of this past year.
    Life will never be as it was before neither because of Dennis‘s death or the Covid virus or the anger and bitterness of our people towards one another.
    I believe that staying present in the moment is the best way for me to live my life. I have wonderful family good friends, and peace in my life for the most part. Thank you for sharing your lives with me. It means so much to be part of a pack.
    Love and peace…..Kathy
    ,

    • Thank you, Kathy, I felt much the same reading those postcards. I am so sorry for your loss and greatly admire the balance you’ve struck. Be safe and do keep in touch.

  4. Jane Frantz said:

    Thank you all for your thoughtful postcards. I read them all! Thank you to Zhen for digging up my old pictures and whoever else helped organize this. Wonderful project!

  5. Amazing Zhen…thank you do much for putting this together…such hard work for so little reward…I do hope you know that you are so very appreciated most definately by me and most certainly by the rest of our MPN Community…thank you!

  6. Oh my dear Zhen
    Fantastic ..I’m just not so sure people know how hard you work to keep this going..Bravo Well Dobe… you’ve cracked it. I’ve only read a quarter of the edition and WOW, you have absolutely excelled in getting this all together so, this is my reading for the next few days and it’s lovely to see what our fellow MPNers are and have been doing…thank you Zhen

  7. Julie Libon said:

    Zhenya, This was a fabulous idea. Thank you to all who sent a postcard in. It was fun travelling, through everyone’s picture, if only from my comfy couch.I had so much fun reading all of the postcards. Lots of smiles and awwws. It was wonderful seeing everyone in pics, especially the little ones. Wishing good health to all!

  8. Taralee Jayaraman said:

    I love our community! It is so wonderful to see the postcards and the spirit of support and love. Wishing you all HEALTH and Happiness!

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