“Without each other, we would surely be lost.”
The reality of MPNs can be chilling.
Along with the pain and worry, the bone-deep tiredness, there’s a kind of isolation, an exile to another country that goes with having a myeloproliferative neoplasm.
MPN. It’s like one of those words whispered in the kitchen to describe a friend’s illness. We don’t come right out and say blood cancer but cloak the reality in a phrase few have ever heard. Myeloproliferative neoplasm. The neoplasia is real enough, the wild disordered growth of cells. But like other blood cancers there’s rarely a visible sign, or spreading lesions and certainly no swelling tumor.
Ours is mostly an invisible disease. Arising in the darkest, oxygen-starved chasm of the bone marrow, blood cancer diminishes rather than augments. It steals our energy, appetite, peace of mind, work, social life. Its face is made visible only in a collection of snapshots viewed under microscope and electronic beam. Its invisibility adds to our isolation as we carry this secret within.
Finding each other.
MPN patients have found several ways to break out of isolation, build new communities in exile, discover sources of courage, pride, and exceptional humor by sharing this time of deepest struggle. The most powerful may be the simple blog.
The healing power of the blog lies in its unique ability to share intimate portraits of our MPN life. A quiet whisper, a chuckle or sob is heard round the world. The blog is both immediate and permanent, its creator both author and publisher.
In the MPN Blog we meet one another in full flesh and openness. Here we read the midnight notes scribbled in panic, hear laughter as bizarre reality punctures a sour moment, and follow the deep recitative of complex diagnostic or therapeutic procedures. Here, we meet each other, brother and sister, and gain strength and wisdom from the words and pictures illuminating our shadowy journey.
In the MPN Blog we break through our exile and find pathways of comfort, knowledge and encouragement. Even at the very edge, we blog. Tossed out of a plunging plane in darkest night and praying our chute opens, we blog. In peaceful interludes and in distress, we reach out to each other and find hope and relief.
These precious documents, archived on the Internet, don’t always have happy endings. They rarely soar and are almost always tinged with the bittersweet memories. But they are truly miraculous. No matter the nature or stage of disease, these MPN patient blogs are powered to end the author’s and reader’s exile, draw us together and lend us strength for the rigors ahead.
In these four Blogs are friends you may have missed, people you might not yet know. These are the blogs written by four women, diaries of encounters with a fierce and hidden disease. Written with compassion and humor, these journals of hope are shot through with the reality of medical procedure and family concerns. The Blogging form itself — immediate, personal, dramatic — brings us to their side in our shared journey.
The following excerpts from four Blogs are a personal selection of a few random entries.
Layout has been changed and copy omitted. You’re encouraged to visit the full Blog and sign on to follow the blogger.
Kathy Dubin Flynn http://www.caringbridge.org/visit/kathyflynn1
What happens when your last chance for recovery, a stem cell transplant, fails? Kathy Dubin Flynn dusts herself off, gets up and starts all over again. She is on the verge of her second stem cell transplant. Her donor’s cells are being collected this week. This young mother has already endured the intense conditioning preceding transplantation, and watched as her counts recovered, gradually, and then failed. Her own immune system survived the conditioning and attacked the stem cells donated by an anonymous German man. She brings to her blog a searing immediacy, high hopes, and her encounter with her donor.
Day +100 – Not Quite There Yet
Written Jan 5, 2012 10:08pm
This is the milestone that bone marrow transplant patients look forward to as a day of celebration, because it’s a point at which risk declines enough that one can venture away from the medical center with normalized blood counts and reduced risk of complications.
I am very relieved to have gotten this far, but still hesitated to post today because while it should have been a day of celebration and positivity, it was, well, kind of crappy.
Bone marrow biopsy: about as fun as it sounds, but I’m very happy to have it over with for another few months. I think I’m done with the bullet biting approach. Some of the five I’ve had so far were bearable enough to get through with local anesthesia plus Xanax (and an overall lack of loopiness, which I like) but the last two just… weren’t. Propofol for me next time, please. I should have initial results sometime next week revealing percentage of donor cells (reflecting the success and engraftment of the transplant,) lack of presence of the JAK2 gene (the biggest indicator that my disease is in remission) and specifics about whether or not the fibrosis (scarring) in my marrow has begun to reverse.
Day +103 – The Purple Vroomix Heads Home
Written Jan 8, 2012 11:00am
Mom and I packed up the apartment and headed home yesterday. It took longer than I thought it would to get organized… it is remarkable how much stuff can accumulate in a little, furnished corporate apartment over four months time. I was a little surprised to realize, mid-morning, that “moving out anxiety” had crept in and intermingled with my elation over giving up Houston as my primary mailing address. I’m very ready to get on with life, but a little uneasy about giving up my Houston home base, knowing that we still have so much to accomplish there.
The round little dude pictured above arrived on one of my worst hospital days back in late September. My brother Mike’s friend, …. sent him to me, and I named him The Purple Vroomix as soon as he emerged from the box. Purple vroomixes exist in the mind of my brilliant three year-old friend Lola Clark, who very matter of factly informed her daddy … that “Purple vroomixes live at the zoo. They tell stories.” Then, they went off to the zoo in search of one. Then, he showed up in my hospital room.
All I really remember from that day in September is that when I wasn’t asleep, it took every ounce of energy just to get through each moment. During the worst of it, I couldn’t let people talk, couldn’t have lights or music or the TV on in the background, couldn’t do anything but lie there without any sensory input and focus on breathing. The vroomix’s arrival triggered the only smile that anyone got out of me that day.
He became an important symbol of support and humor throughout my 100+ days in Houston, because I caught him looking at me over that pointy beak so often, when things were otherwise pretty humorless. He has watched me sleep since late September and has done an excellent job reminding me to laugh when I didn’t feel like it.
He came home with me yesterday. Despite my children’s tireless efforts to steal him from my bedroom, I’m going to keep him where I can see him. Every time I catch a glimpse, I see a squishy, purple symbol of the amazing support I have received throughout these challenging months, and I am reminded to smile and find humor in the face of difficulty. ..
Five Months In… Watch and Wait
Written Mar 8, 2012 11:23pm
The JAK2 gene mutation, which is associated with my peculiar blood disease and which was gone a month after transplant, is back, which means that I’m no longer in remission….Most of my post-transplant drugs have hit the “old prescription drugs” pile in the big tupperware box in the linen closet, including tacrolimus, which is the one that was keeping my immune system at bay.
Happy Re-Birthday to Me
Written Sep 27, 2012 9:30am
One year ago today, I received an infusion of life-saving, unrelated donor stem cells, flown here by a medical courier after an unimaginably generous soul in Germany anonymously gave them to me, just because he was my perfect match.
We transplant people call the anniversary of the day we received our new cells our “re-birthday.”
Those precious cells regenerated my bone marrow and immune system, intentionally destroyed by my medical team with lethal doses of busulfan and fludarabine. Without the donor infusion and successful engraftment of that one bag of cells, the chemo would have killed me.
Those words sound terrifying now, much more so than when I was told all of that as it happened. Sometimes it seems like it must have been a dream, because I can’t believe I lived all of that without completely falling apart.
Written Jan 3, 2013 11:57pm
My bone marrow is failing. It sucks. I did not choose this fate, cause it, or make it worse. It messes with my life in every way and has been at the forefront, emotionally, mentally and physically, of my every action, thought and choice of every day, for two years.
I am proud to have mostly figured out how to live “life as usual” and I pay generosity forward in every way that I can.
Sometimes I cannot….
Starting Round Two
Written May 3, 2013 8:02am
I spent all day Tuesday packing up to move myself to Houston for several months. This is a somewhat complex process because in addition to gathering the blankets, clothes, and other items I want to have with me during my month-long hospital stay, I also need to set up my Houston apartment, my home away from home post-transplant, where I will work on building a new immune system before I can return to my family at the end of August.
Clem asked me, what is different this time around? What makes transplant two different from the one I had 19 months ago?
For one thing, the primary chemo “conditioning” drug is different this time. Busulfan will be replaced with melphalan. Melphalan is a slightly harsher drug that is often used in “salvage” (second) transplants. The idea is to destroy all the bone marrow so that my own cells will not take over again after donor engraftment. My understanding is that the side effects might be worse than last time. I’m not exactly looking forward to that, but I will be thrilled to get past it.
Another major difference between last time and this time: I now have very solid connections with several friends who have myelofibrosis, who have endured transplant (most of them after me) or who have cared for a loved one through transplant for one blood cancer or another. The bonds I share with people who walk similar paths have become vital to my well being. They inspire me to keep moving forward.
The Power of One
Written May 7, 2013 11:57am
And somewhere overseas, my 22 year-old genetic twin is midway through her stem cell donation. She is probably finished with Day 1, with one more day to go tomorrow because she is a “smallish person.”
The ultimate expression of the power of one….
Marina Sampanes Peed http://www.marinapeed.com/… http://www.marinapeed.com/
A mom, community organizer, nonprofit consultant, fund-raiser and advocate for many social causes, Marina Sampanes Peed is waiting for a stem cell donor. Her blog extends back to 2010 when she her PV seemed to be under control with standard drugs. Over the years, her humor, sharp powers of observation and desire to reach out and help others illuminate her blog.
January 23, 2013
Yippee! It’s Time for Another BMB
This Year’s “Rumper Sticker”
I want the medical staff to see me as a person, not a procedure. Thanks to the creativity of many friends on Facebook, I got lots of suggestions for what my daughter would write on my rump. Last time, she wrote “Private Property” and “Bad 2 the Bone” above each cheek. Some of this year’s top suggestions:
- You Break It, You Buy It
- Objects in rear are closer than they appear
- Left Right
- You’d better buy me dinner first
- Warning — Blast Zone
Here’s the winner: We’ll see how the doctor reacts!
Thursday, February 21, 2013
My last phlebotomy was on June 29, 2012. It took about 15 minutes to withdraw 500 ml of that RBC-rich blood from my body. Now, almost eight months later, I’m receiving my first transfusion of packed red blood cells. What a ride this is!
Thursday, February 21, 2013
So yesterday I went to the hospital’s outpatient infusion center to get my blood typed and cross-matched. Here is a good explanation of the blood transfusion process.
Today I’m getting 2 units of B negative packed red blood cells from a donor in Riverdale, Georgia. A nurse came in with a cooler that contained what I’m now calling my “energy pack.” After verifying the info on the blood bag with the info on my wristband, the transfusion commenced.As I sit here and write this while someone’s generous gift is flowing into my veins, I feel quite humble. Someone took time (and energy) from his/her daily routine to help a stranger. It is an unconditional gift. No questions or judgments about my race, religion, age, gender, political views, sexual orientation, family situation, employment status, or the reason I need the blood. A pure gift of care and concern for others.One of the nurses explained that this donor helped me with the red cells, and another with the white cells, and a third person with the platelets. How is that for leveraging a donation?
2 Reds Straight Up, with a Platelet Chaser
APRIL 6, 2013
When I asked about how to best prepare for the big fight (other than eating well, avoiding illness, and exercise), she recommended that we prepare for the enormous physical and emotional toll it will take on me. It can be frightening to someone who doesn’t understand that it is part of the process. Others have told me that the intense chemo takes you to death’s door, leaving you to crawl back to the land of the living.Well folks, I’m not sure we’ll be sharing photos of that grandeur (but you never know).
While the platelets were dripping in, the hospital chaplain stopped by. Now, I don’t know why, but when an official person of God shows up in my hospital room my first reaction is, “Why am I the last to know? How long do I have? Holy crap! What sins should I be confessing? Is eating ice cream out of the carton (double dipping of course) and sticking it back in the freezer a deal breaker?
“We talked for awhile, while I was under the influence of Benadryl, and I think I confessed to a lot of anxiety about this whole silent sickness / need a transplant / need an unrelated donor situation. The speed at which this seems to be progressing is really throwing off my well-intended plans to hit some Bucket List items before the transplant.
She listened attentively, likely wishing she picked another room.
Now, a week later, I think I get it. Sitting in a cool hospital room in a no-frills “gown” that is open in the back (nothing you would see at Victoria’s Secret), I felt small, weak, and vulnerable. The IV was in place (for the fluids and anesthesia) and I signed several information and consent documents.
The magnitude of the illness hit me like a ton of bricks. Tears started streaming down my face, silently, like a slow, quiet leak at first.All of a sudden it hit me: I’m sitting in this room, about to have a port implanted in my body, because my veins are shot from years of phlebotomies, infusions, and blood draws. I need the port because I require blood from other people to stay alive until another donor enables me to receive a blood stem cell transplant.I have a deep belief that the stem cell transplant will not only save my life, it will restore my health to great condition. I will use this gift to do great things for others, although I do not yet know what direction this will take.
Marielle knew something was wrong as she prepared for her wedding in 2011. She thought the exhaustion might be from excitement or maybe her dizziness and light headiness came from that glass of wine she had after a long day of work. But afterward, as she settled into her new married life, she began feeling pain in her left side and her abdomen became enlarged. She questioned whether she could be pregnant, or possibly just gaining weight. Finally, grabbing her “lip gloss and cell phone” she headed out for a doctor’s appointment…and ended up in the hospital for nearly two weeks with a diagnosis of myeloproliferative neoplasm. Her blog approach, unlike those of older bloggers with more acute conditions, so far skirts around the edges of procedures and diagnoses. Marielle is an observer of the outer world and reports on what it’s like to be in the world with an MPN…and not look sick.
Tuesday, May 7, 2013
If I had a Nickel…
Lina D…. http://linampn.wordpress.com/Lina D. has had ET for six years. Her blog has several compelling elements. Primarily, she lays out the case for advocating for yourself, for persevering in seeking – and getting – appropriate care. She also presents a complete story of Pegasys intron-a treatment from injection procedure to results and side effects, carefully noted and photographed. Her WordPress blog is named “The Life of a Vaguely Neurotic ET Patient” with apparent reference to her determined cataloging of data and procedures affecting her ET…and her ability to participate aggressively in her own treatment choices
Posted on April 9, 2013 by linampn
So…today is my 2nd migraine in a month. It is pretty darn miserable, not going to lie. I couldn’t see for the better part of an hour due to the charming visual aura that’s been in my head…which, incidentally looks something like this: I drew that when I was 18, and just out of surgery for my hip…so pain killers were involved…but this is a pretty accurate depiction of what my visual auras look like when I’m getting a migraine. Picture it flickering and taking over half of your vision at a time, and completely taking away your peripheral vision, and that’s pretty much it.
Posted on October 22, 2011 by linampn
It came to my attention that I really haven’t given any information as to why I am blogging, and why I have chosen such a narrow subject about which to write the aforementioned blogI’m Lina, a 24 year old Essential Thrombocytosis patient. Essential Thrombocytosis or ET is a Myeloproliferative Neoplasm (MPN).
Basically it means that my bone marrow is extremely over-zealous about producing blood cells. Platelets in particular. I was diagnosed in 2005, and it has been a charming roller coaster ever since. Enough about me….now why I chose to whine in a public forum….The short answer is…because I wanted to.. But the better answer would probably be that in the 6 years I have had this disease I haven’t really had much of an outlet to talk about it. My friends and family listen, which is nice, but sympathy really only goes so far. I attended a meeting in Chicago earlier this summer, and it was mentioned that other patients might enjoy hearing my perspective on things (as I would enjoy hearing theirs), so here it is. I hope that this will be helpful to others. If anyone has questions or would like to suggest a topic, feel free to leave it in the comments section.
Posted on May 9, 2012 by linampn
As far as my ET….lately it has been kicking my behind. I am exhausted all the time, bruising easily, the pain my side (spleen) is getting steadily more constant, and I am getting discouraged with the PegIntron now.For now I am off to work some more, but I will update this later.
Posted on May 23, 2012 by linampn
I had an appointment today with my hem/onc. The blood counts look good, Platelets 699K (which for me is pretty darn grerat. Typically they are twice as high :) )I would love to continue on with how awesome my blood counts are currently….but I am distracted by something at the moment. I feel extremely vindicated today. I was told that the medication I am on (you know the one….the one my doc refused to let me use for months, the one I had to fight and scratch and beg to get prescribed….) is working far better than he ever thought it would. I couldn’t help but grin from ear to ear and say that I was glad to hear it. Inside I was gloating a little bit…..
Posted on March 29, 2012 by linampn
PegIntron: Weeks Number Seven and Eight…It took me several weeks of feeling like something was wrong, and driving everyone in my life crazy with my mood swings and bad attitude before I finally contacted my GP about the way I was feeling. I broke my own cardinal rule about being a proactive patient…*Sigh* we all slip sometimes. Part of me wasn’t sure if this had to do with my meds, or if it was just stress, or what it was. I was trying not to jump to conclusions, but had a sneaking suspicion that it was connected somehow, but I had a hard time dealing with it.
Posted on February 18, 2012 by linampn
It’s that time again…I just completed my 3rd dose about an hour ago. So far no real side effects yet. My belly hurts where I injected…it feels like a bruise, or a bee sting peerhaps..though I’ve never been stung by a bee, so I guess I can’t really use that description, can I?Anywho…I spoke a bit too soon when I said no side effects…the headache is starting already. That’s pretty quick compared to the last two times…it could be a coincidence of course. I may just have a normal headache.
You are invited to submit your blog for inclusion in the growing testimony that stands as one of our greatest supports in our times of greatest need. Just send a link to your blog along with a note to ourMPNforum@gmail.com. New to blogging. Check out The MPN Blog 1.1.
A great resource for all things MPN is the MPN Research Foundation Blog at www.mpnrf.blogspot.com In addition to Foundation news, views and video clips, there are guest blogs to discover. Contact Michelle Woerhle: firstname.lastname@example.org
Take me back to the Contents
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Comments on: "BLOG Forum" (3)
The writing is wonderful and the sentiments heartfelt. And one’s I can relate to. Especially those pesky visual auras. Thanks to all of you for sharing.
I had often thought that blogging was a kind of “yuppie” thing that people who had nothing else to do with their time did. Now I see it as an essential way to connect, understand, fight the isolation of a rare disease that no one has heard of and so much more. What a unique way to explain the unexplainable. I love the humor and the emotion that is displayed in each one. What a gift to give someone else. A chance to see into the frightening world of living with and fighting an MPN, maybe to see you are not alone in this fight. Thanks, Zhen, for the forethought to include these invaluable jewels in this magazine.
Great! These people are such great writers.thanks