The story of Cheryl
29 February: A rare day for #RareDiseaseDay. Join us in making the voice of rare diseases heard today! http://www.rarediseaseday.org/
I’m 56 years old. My story starts with finding a lump on my arm. At my Dr’s appt I asked about that and discussed other issues going on. I was sent to a surgeon for removal and a biopsy. The “C” word was a thought and off I went for lab work. I’ll never forget my doctors note to me; the day before surgery “you need more blood testing.” That day my life changed forever.
In January 2007 I needed confirmation it was safe to have surgery. After several calls to various Doctors surgery was a go. Thankfully no cancer! Whew. Only to hear on follow up lab work I had a blood disease. PV or Polycythemia Ruba Vera to be exact. It’s a very rare disease. There’s no cure, you’ll need a pint of blood taken to control it. It can progress to leukemia. If it does you’ll need a Bone Marrow Biopsy and need a doner. Don’t google it it will only scare you. Well that it did. My head was spinning. Telling my husband then my family was terrifying. The thought of not being in control over my body was devastating news. After lots of crying, why me’s and dreaded Nuclear testing (as if that wasn’t scary enough) it was confirmed. This disease would shorten my life and compromise what’s left.
Starting out I was referred to an oncologist who stated “very few know and understand this disease “. Ok, now I feel so much better. With this disease typically the life expectancy is 10 years. (I’m on year 9). Now we have to take a pint of blood every 1 – 2 wks. Then do a Chem panel to see your levels. Ok after one month of weekly draws. Your anemic, you need IV infused iron treatments. Lovely. Now I’m so anemic my heart skips so bad you can see my chest moving when I give my next pint of blood in one week. I can’t breath, my legs throb. I itch, can’t shower. “Your platelets are too high you could have a heart attack or a stoke.” This continues for 5 months. Meanwhile I work full time, take care of my family, a house and a dog and sleep all the time. I’m exhausted.
In May, the day before Mothers Day, I got up, went to the bathroom and had excruciating pain in my side. I decided to go to the couch and lay down. After all, everyone was sleeping. I took five steps and reached my hand to grab the railing at huge top of my steps and that’s all I remember. I passed out. My husband woke hearing me hit the floor and my head on the wall. I woke hearing my daughter screaming and my husband over me. Next thing I knew firefighters where in my house. Then the pain. Off to the hospital. My first visit. The next day I give a pint of blood Two days later I see a specialist from Boston. He tells me “the next 10 years will determine my life expectancy.” I have blood cancer! What? No-one told me I had cancer!!! I tell my family, we are all confused. It’s true.
3 times in this process I went to my primary Doctor and asked for a referral to a more knowledgeable Dr. Finally, I had to demand to see someone else. Meanwhile my body is shaking, sweating, itching, I’m exhausted all the time. My family suffers in total worry over me. My kids are all older, but old enough to understand the significance of what’s happening to us all. Fear has now sunk in…Finally, September 2007 I get a new Dr. She is amazing! She tells me never will I give you iron infusions. Yes! In my second month seeing her my heart is jumping out of my chest so bad my BP shoots up and off to the ER. Go again. I’m dehydrated so bad my body is going into shock. I’m trembling. I’m covered in hot blankets. More medicine is pumped in. Now, no more pleubotomies without IV infusions. So my 45 minute treatment turns to 4 hours. Yes, work loves all this!
Bi-weekly blood tests, bi-weekly to monthly plubs over the course of 6 years. Now my platelets have risen to 987k, normal is under 400k. Anything over 500k is extremely dangerous my dr tells me. It’s time to start the chemo medicine. “We typically only give this to people in there 60’s because it can damage other organs.” Great… My spleen is swollen and throbbing, it’s hard to breath and walk, do stairs, my legs throb at night. So bad I’m in tears. I try to hide my misery from my family… I start chemo pills. The medicines not working. Platelets too high, red bloods cells too high, white bloods cells are high. My bones ache, yes, they are producing too many cells. The itch is out of control! I’m overheated I can’t breath. I get migraines. Five in one week. I start hives, anxiety, I’m depressed. I’ve tried all kinds of meds, creams, its brutal. I’m in tears. I have chest pain, side pain, leg pain. I’m hiding in the house under the air conditioners so I can breath. I can’t shower, go in the pool. The itch ugh. I change my clothes and itch for hours. I’m shaking.
Time for a new Dr. Off to Tufts in Boston. A specialist.
I start another chemo pill Jackify. It’s not covered by my insurance. My pharmacy tells me 30 days cost $30k dollars. In tears again, are we going to loose our house? Will my kids get anything we’ve saved? Will I get to see my grandkids grow?
My Dr. hears this and writes the insurance company and gets an emergency approval. It comes in the mail. I can’t have my daughter-in-law use the bathroom (she’s pregnant) or touch anything I have touched while handling this medicine, no grandkids near the area I take the meds. It’s that dangerous. With that comfort (lol), I start the meds. I’m desperate for some normalcy again. It works, my spleen is shrinking, my counts are coming down, but my anxiety and hives are getting worse. I have to stop the medicine.
I’m back on chemotherapy pill higher doses than anyone she has. 1500 mg 5 days, 2000 mg 2 days.
For the first time I make it to 4 months without giving a pint of blood. I’m thrilled! Am I going in the right direction? I remember the 10 year life expectancy.
Allergist, Zyrtec in PM , Allegra in AM to control hives and help with itch. Increase prednisone…
My Dr. Retired. NO! New Dr. he says “I don’t have anyone as bad off as you”. Great!
Counts fluctuate, itch non-stop, hard to breath, blood pressure keeps going up. Anxiety meds, depression meds (also to help w night sweats). Heart races won’t stop. Admitted in ER. Heart Specialist, EKG, ultrasound, stress test. Need plub. start BP meds. Pneumonia, colds that take 4 months to go away. My gums bleeds, several cavities, abscesses and pulled teeth. Cough daily, need to clear my lungs. Constant pain in lung when I cough now.
The progression of disease, exhaustion, pain, brings me to Boston Specialist. I have second blood disease. Marginal Zone Lymphoma…needs to be treated with IV Chemo, 6 hrs in chair w nasty side effects. Dr. waits for pill coming soon…..it’s in the back of your head every time there’s a new pain.
Loads of gas, food doesn’t digest the same. Appendicitis, surgery in 2015. Gall Bladder surgery 7 weeks later. My poor family…so here I am on the couch recovering from my third surgery. Meanwhile my family suffers, my friends worry. I try to think the worst is over…except the disease progresses with age. I’ve already had quite a ride. I hope it stops.
This is a short version of my daily dealings with these disease’s.
It’s time for a cure. This disease treats everyone differently. It causes many challenges to deal with daily. Please help spread the word we need a cure!