All Aboard!
I am sitting here underground, deep in the belly of Penn Station on Amtrak train number 94 northbound to Boston. All around me I see signs beckoning me to Key West, Marathon and the Islands. On this blustery February day in NYC the thought of a trip somewhere warm is seductive. But my destination is northbound, 100 miles south of Boston. The cold and snow will be there waiting. My visit to NYC has me wondering if I should consider a trip. A trip on the treatment train.
My trip to NYC was my twice annual visit with Dr. Silver. I am part of a large group of early diagnosed MPN patients who have an MPN that may have been confirmed by a Jak2 test or a bone marrow biopsy but symptoms are relatively minor and quality of life adequate so we are considered low risk by our doctors and treated with careful monitoring of counts and symptoms. A year ago a red cell mass study confirmed my diagnosis as ET, but there has always been a lingering question if I might actually have early stage PV. A paper published just the day before my visit
www://www.expertreviews.com/doi/abs/10.1586/ehm.12.69
had Dr. Silver re-thinking my diagnosis. This decision would determine when to jump on board the treatment train. As Dr. Silver reminded me, a trip on the treatment train is a ‘shared decision’.
All Aboard!
Recently my symptoms have increased. Minor chronic headaches, occasionally significant fatigue, an infrequent ocular migraine and the infamous itching after showers. Blood counts all over the place that suggest either ET or PV, depending on who is reading the labs. The big question is when do I start the journey and jump on the treatment train?
Unlike a seductive trip on Amtrak to Key West the treatment train doesn't stop. The treatment train continues on. It may take long station stops or change tracks to add or lose cars, but it never stops. As a patient with a chronic illness invisible to even my closest family it can be difficult to feel legitimate. I have a disease. Some call it a blood cancer. I feel different and know I have symptoms. But for now it is convenient to pretend my MPN doesn't exist. If I jump on the treatment train my disease becomes real. I become a 'sick patient'. One in need of treatment FOR THE REST OF MY LIFE.
Am ready for a lifelong train ride?
All Aboard!
My life with an MPN is the same as it was before. It hasn't changed except for the ever present knowledge that I am no longer that ‘happy boring patient’ with a handful of medical visits each year. I have a disease that must be monitored and will progress. The biggest change in my life has been the mind game of becoming a PATIENT with an EXOTIC disease. I have a posse of specialists and a half dozen more appointments to my schedule. I have regular blood sticks, but my life hasn't changed. So why should I take a trip on the treatment train?
All Aboard!
There is a psychological shift that occurs when one moves from a patient with an invisible disease that requires no treatment to that of a patient who needs treatment. We become sicker even as the treatment makes us better. I can't pretend the disease isn't real if the label on the prescription bottle advises me not to touch the pills. I can't ignore the disease if I am looking at a bright red SHARPS disposal box in the bathroom each day. I cannot avoid the disease as I prepare a syringe with medication for a weekly injection.
Does riding the treatment train make my disease legitimate in the eyes of family and friends? Are the side effects of treatment better than the 'minor' complaints I have without treatment? Will treatment put my disease into remission and make me feel better? Is the devil I know worse than the devil I don't know?
I am a woman who needs well defined parameters. I like yes/no answers. A trip on the treatment train might move my life forward by taking me out of the station towards a destination. Perhaps a destination defined by wellness without the anxiety of waiting. I don’t know ‘what’ I am waiting for. Higher counts, thrombotic event, a cure?
A trip on the treatment train is a shared decision. I can’t it make alone.
The MPN social networking community is a wonderfully caring and informative group. Together we bitch and complain, laugh and share pain. We get it. We understand. It can be tempting watching others on the treatment train to join them in the journey. I listen to stories of trips to exotic locations on the Jakafi express or controversial pegalated interferon coach and see the crowded hydroxy urea cars and I can't help but wonder if a trip would be right for me. Would any of those cars on the treatment train bring relaxation and peace?
I can never be that happy boring patient again. Those Amtrak signs call me to warm exotic locations, but I am afraid my trip may leave me riding the treatment train forever. Just like Charlie in an old Boston folk song beneath the streets of Boston lost on the M.T.A.
http://www.youtube.com/watch?v=3VMSGrY-IlU
Next stop...New London
Sent from my iPad
Showing posts with label mpn. Show all posts
Showing posts with label mpn. Show all posts
Saturday, March 16, 2013
The Draft
The Draft
I was drafted earlier this month. What's that? You say the draft ended in 1973 and only men were drafted? Not so my friend. This draft is ongoing and I fear it will never end. This draft calls mostly women, although a few men have been conscripted. I was drafted to fight to save the ta-tas, the boobies, the hooters, the bazookers, the knockers, melons, jugs and titties. I was called into the war against breast cancer. My tour of duty has been brief but I am forever changed.
War has a way of changing people.
Just as I was instructed I registered for the draft 20 years ago by submitting for my first mammogram. And just as my doctor ordered I updated that registration with yearly mammograms. Happily submitting the girls for radiological inspection. I knew the odds were low that I would be asked to report to duty. I had no fear. I had no worries. My draft number was pretty high. Even that day years ago when I received a 'call back' for a magnified view of the girls I had no worries. Come back in six months for more pictures. All will be good. I am just a rock star.
But Not so this time. The drill was the same, no lotion, no powder, no deodorant the morning of the exam. Report to the inspection facility at the appointed time. Strip from the waist up and put on the recruitment Johnny. The lead shield was applied. A little sign reminded me 'we compress because we care'.
I had no worries.
My doctor called two days later to tell me my draft number had been picked. Some microcalcifications had been found, visible only by mammography. There had been no lumps, bumps, oozing or rashes. No outward signs that might have warned me. My doctor continued, the only way to rule out ductal carcinoma in situ was to give the pathologist a little bit of tissue. And with that I was drafted into the war against breast cancer.
Having an MPN did not give me a free pass from other diseases and cancers. In fact people with ET and PV have an INCREASED risk of developing prior and secondary cancers.
The breast biopsy was scheduled 10 days later. I was told to stop taking aspirin 7 days prior to the procedure. This caused me to worry. The only defense I have between me and ET causing some sort of thrombotic event is that tiny 81 mg tablet I take each night. That itty bitty pill is enough to keep those platelets slippery and sliding through my arteries and veins. That lowly little tablet keeps the headaches at bay. It halts the foot cramps and hand tingling. I feel safe. I feel protected.
Now I feel worried, anxious and scared.
I called my hematologists, both of them, the big doc in NYC and my local top doc. I needed to know if I would be safe without my baby aspirin. They each assured me it would be ok and even put it in writing.
The intake nurse called to give me my marching orders and describe the procedure and what to expect. These early descriptions of battle magnified my anxiety. The nurse told me many new recruits need psychopharmacology to cope with the process. She suggested I call my gyn and request an amply supply.
At this point I realized in some weirdly odd way the experience of waiting for the ET diagnosis two years earlier had prepared me for the uncertainty of the breast biopsy outcome. I had been down this road before. Despite my fear I could handle whatever the outcome might be.
I am not a brave soldier. I knew the initial battle would be ugly. I called my doctor for those meds and tried them out a few days before the procedure only to discover the prescribed dose would be woefully inadequate.
As dawn rose on the morning of battle with my anxiety mounting, my husband drove me to the Combat Support Hospital. Since I was 'under the influence' I needed someone to witness my consent for battle. The nurses and doctor were wonderfully sensitive to my highly anxious state. Promising to explain every step of the process right down to the sounds of the crinkling paper I would hear. I would not be in a position to see what was being done. I started to sob.
War is ugly and those who have not fought must be spared the brutal details of battle. The sisterhood of soldiers drafted for this war know the horror. Those who have not been drafted need only visualize taking the family car into the repair shop. Driving the car up on hydraulic lifts and the mechanic working on the undercarriage from the pit below.
Medical procedures seem designed to de-personalize the HUMAN BEING into nothing more than pieces and parts to be pricked, cut and explored.
I had four days to wait. Four days to consider the possible outcomes.
IF the pathology report was positive surgery appeared inevitable. I began to compile a list of questions and concerns. How would ET and my elevated platelets impact surgery? Where should the surgery be done? Would the breast surgeon know about MPNs? I have 2 heme/oncs now, would I need another oncologist? Would I need to treat the ET before battling breast cancer? Should I find a leading breast cancer expert for a second opinion? Do platelets provide the fuel for tumor activation?
My tour of duty in the battle against breast cancer was brief. I have been honorably discharged from service with a BENIGN pathology report. There is no cancer thank God. My discharge papers put me on inactive reserve status. I am to report for radiological inspection again in six months.
I have become a breast cancer warrior. I have been left with physical scars. I took a bullet that left titanium shrapnel forever embedded in my breast. I am one of the lucky ones. I am a survivor. The war continues.
Sent from my iPad
I was drafted earlier this month. What's that? You say the draft ended in 1973 and only men were drafted? Not so my friend. This draft is ongoing and I fear it will never end. This draft calls mostly women, although a few men have been conscripted. I was drafted to fight to save the ta-tas, the boobies, the hooters, the bazookers, the knockers, melons, jugs and titties. I was called into the war against breast cancer. My tour of duty has been brief but I am forever changed.
War has a way of changing people.
Just as I was instructed I registered for the draft 20 years ago by submitting for my first mammogram. And just as my doctor ordered I updated that registration with yearly mammograms. Happily submitting the girls for radiological inspection. I knew the odds were low that I would be asked to report to duty. I had no fear. I had no worries. My draft number was pretty high. Even that day years ago when I received a 'call back' for a magnified view of the girls I had no worries. Come back in six months for more pictures. All will be good. I am just a rock star.
But Not so this time. The drill was the same, no lotion, no powder, no deodorant the morning of the exam. Report to the inspection facility at the appointed time. Strip from the waist up and put on the recruitment Johnny. The lead shield was applied. A little sign reminded me 'we compress because we care'.
I had no worries.
My doctor called two days later to tell me my draft number had been picked. Some microcalcifications had been found, visible only by mammography. There had been no lumps, bumps, oozing or rashes. No outward signs that might have warned me. My doctor continued, the only way to rule out ductal carcinoma in situ was to give the pathologist a little bit of tissue. And with that I was drafted into the war against breast cancer.
Having an MPN did not give me a free pass from other diseases and cancers. In fact people with ET and PV have an INCREASED risk of developing prior and secondary cancers.
The breast biopsy was scheduled 10 days later. I was told to stop taking aspirin 7 days prior to the procedure. This caused me to worry. The only defense I have between me and ET causing some sort of thrombotic event is that tiny 81 mg tablet I take each night. That itty bitty pill is enough to keep those platelets slippery and sliding through my arteries and veins. That lowly little tablet keeps the headaches at bay. It halts the foot cramps and hand tingling. I feel safe. I feel protected.
Now I feel worried, anxious and scared.
I called my hematologists, both of them, the big doc in NYC and my local top doc. I needed to know if I would be safe without my baby aspirin. They each assured me it would be ok and even put it in writing.
The intake nurse called to give me my marching orders and describe the procedure and what to expect. These early descriptions of battle magnified my anxiety. The nurse told me many new recruits need psychopharmacology to cope with the process. She suggested I call my gyn and request an amply supply.
At this point I realized in some weirdly odd way the experience of waiting for the ET diagnosis two years earlier had prepared me for the uncertainty of the breast biopsy outcome. I had been down this road before. Despite my fear I could handle whatever the outcome might be.
I am not a brave soldier. I knew the initial battle would be ugly. I called my doctor for those meds and tried them out a few days before the procedure only to discover the prescribed dose would be woefully inadequate.
As dawn rose on the morning of battle with my anxiety mounting, my husband drove me to the Combat Support Hospital. Since I was 'under the influence' I needed someone to witness my consent for battle. The nurses and doctor were wonderfully sensitive to my highly anxious state. Promising to explain every step of the process right down to the sounds of the crinkling paper I would hear. I would not be in a position to see what was being done. I started to sob.
War is ugly and those who have not fought must be spared the brutal details of battle. The sisterhood of soldiers drafted for this war know the horror. Those who have not been drafted need only visualize taking the family car into the repair shop. Driving the car up on hydraulic lifts and the mechanic working on the undercarriage from the pit below.
Medical procedures seem designed to de-personalize the HUMAN BEING into nothing more than pieces and parts to be pricked, cut and explored.
I had four days to wait. Four days to consider the possible outcomes.
IF the pathology report was positive surgery appeared inevitable. I began to compile a list of questions and concerns. How would ET and my elevated platelets impact surgery? Where should the surgery be done? Would the breast surgeon know about MPNs? I have 2 heme/oncs now, would I need another oncologist? Would I need to treat the ET before battling breast cancer? Should I find a leading breast cancer expert for a second opinion? Do platelets provide the fuel for tumor activation?
My tour of duty in the battle against breast cancer was brief. I have been honorably discharged from service with a BENIGN pathology report. There is no cancer thank God. My discharge papers put me on inactive reserve status. I am to report for radiological inspection again in six months.
I have become a breast cancer warrior. I have been left with physical scars. I took a bullet that left titanium shrapnel forever embedded in my breast. I am one of the lucky ones. I am a survivor. The war continues.
Sent from my iPad
Tuesday, December 27, 2011
Welcome to my life!
2011 is quickly drawing to a close and I am struck by the changes that have occurred in my life during the past year. I had been a happy boring patient with just a handful of routine medical visits per year. Now I am an exotic patient with a rare hematological malignancy and a bevy of specialists. Where do I begin?
September 2010
My summer vacation has ended and I resumed my work as a middle school counselor. Middle school - grades 6, 7 and 8. Roughly ages 11 to 15. I have a caseload of 300 students. I like to live dangerously. One day I heard an announcement over the building PA system, the school nurse was conducting annual vision and hearing screenings. Teachers were to bring their classes to the health room for each student to be screened.
I noticed recently a persistent ringing in both ears known as tinnitus and that more and more of my students seemed to mumble. Teachers too, especially women, loved to speak to me by simply moving their mouth. I guess I was suppose to read lips. I was growing weary asking people to repeat what they just said. I decided to pop into the health room and ask the nurse if she would do a hearing screening for me.
Nurse Kelly was very eager to accommodate my request. She brought me into her back room and had me put on a headset, then she fiddled with some nobs and told me to raise my hand when I heard a tone. In just a few minutes she had the results plotted out on a graph. There was a noticeable loss of hearing in a specific frequency in both ears. She recommended that I have it checked out further with an audiologist.
Fast forward through the next few months. I was seen by an ENT - ear, nose and throat specialist - who ruled out any physical problems and ordered a complete hearing test by his audiologist. These results were remarkably similar to the quick screening the school nurse completed. The ENT told me I had a sensori-neuro hearing loss usually seen in patients who have been endured chemotherapy or loud gun shots. I had experienced neither. He offered no thoughts on what could have caused the hearing loss but he assured me it was not the result of my daily exposure to hundreds of screaming middle school students in the gym or cafeteria.
So what did this all mean for me? The doctor said hearing aids would be too annoying. Only a very limited frequency was affected and the devices would amplify the sounds I can hear well. The doctor said I would have difficulty with soft voices, women and children, people with accents and conversations with background noise. He suggested I avoid those situations or try to minimize the distraction and come back next year for a follow up exam.
And so I began my journey on the MPN fast lane.
September 2010
My summer vacation has ended and I resumed my work as a middle school counselor. Middle school - grades 6, 7 and 8. Roughly ages 11 to 15. I have a caseload of 300 students. I like to live dangerously. One day I heard an announcement over the building PA system, the school nurse was conducting annual vision and hearing screenings. Teachers were to bring their classes to the health room for each student to be screened.
I noticed recently a persistent ringing in both ears known as tinnitus and that more and more of my students seemed to mumble. Teachers too, especially women, loved to speak to me by simply moving their mouth. I guess I was suppose to read lips. I was growing weary asking people to repeat what they just said. I decided to pop into the health room and ask the nurse if she would do a hearing screening for me.
Nurse Kelly was very eager to accommodate my request. She brought me into her back room and had me put on a headset, then she fiddled with some nobs and told me to raise my hand when I heard a tone. In just a few minutes she had the results plotted out on a graph. There was a noticeable loss of hearing in a specific frequency in both ears. She recommended that I have it checked out further with an audiologist.
Fast forward through the next few months. I was seen by an ENT - ear, nose and throat specialist - who ruled out any physical problems and ordered a complete hearing test by his audiologist. These results were remarkably similar to the quick screening the school nurse completed. The ENT told me I had a sensori-neuro hearing loss usually seen in patients who have been endured chemotherapy or loud gun shots. I had experienced neither. He offered no thoughts on what could have caused the hearing loss but he assured me it was not the result of my daily exposure to hundreds of screaming middle school students in the gym or cafeteria.
So what did this all mean for me? The doctor said hearing aids would be too annoying. Only a very limited frequency was affected and the devices would amplify the sounds I can hear well. The doctor said I would have difficulty with soft voices, women and children, people with accents and conversations with background noise. He suggested I avoid those situations or try to minimize the distraction and come back next year for a follow up exam.
And so I began my journey on the MPN fast lane.
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