My Cancer Journey

When people find out a person has or has had cancer, they get nervous. They don’t want to “intrude” but they are full of questions. How did you find the cancer? Aren’t you young for this? How long have you had it? Did you lose your hair? What is the prognosis?
For me, I think the story begins in January 2003. I had a horrible cold, which developed into what I thought was bronchitis. Of course, being raised to be tough, I didn’t go to the doctor. After a week I was feeling better, byut noticed that what I had thought were swollen glands in my neck, had not decreased on the left side. I continued to monitor this bump, making jokes and calling it my lymphoma friend. Little did I know that’s what it actually was! I had friends who were nurses feel it, and of course they all said to go to the doctor, which I still didn’t do. Finally, in early June I was forced to the doctor to get my allergies checked or she wouldn’t give me new prescriptions.
I knew this was something serious when the doctor said I couldn’t wait 3 weeks for a CAT scan. Like most teachers, I wanted to wait until school was out for the summer to do all my appointments. I had the CAT scan the next day and was told a few days later that there was “activity”. Don’tcha love that word? My GP sent me to a general surgeon who was going to “explore the mass”. I still didn’t quite realize that they thought it was cancer, until I said to the doctor, “Isn’t that a nice term for biopsy?” and he finally used the word.

The lymphatic system.

The doctor was great telling me it was Hodgkin’s Disease when I woke up in recovery. He was very gentle, had already spoken to my family in the waiting room, and explained about the different kinds of lymphoma. If you have to have cancer, this is the one to have. Very high remission rate
BUT… I am one of the exceptions! I did the standard ABVD chemo plus radiation treatment. It went pretty well, the radiation really burned me up, but the chemo was fine.

J did my hair the day before
we shaved it off for charity.

In February 2005, a year after I was told I was in remission, spots started appearing on scans again, so I was sent to Dana Farber Cancer Institute in Boston for an autologous bone marrow transplant, also know as a stem-cell transplant. Autologous means they used my own bone marrow, after extreme radiation. At first it seemed like it worked, but it didn’t; now sludgy stuff was showing up in my lungs on the scans! I was hopeful that it was “just” fungus, instead of cancer, but a lung biopsy told us it was cancer again. BTW, of all the things that have been done to my body in these 5 years, the lung biopsy was by far the worst and most painful with the longest recovery.
Now I switched to a new doctor at Dana Farber and got prepared for an allogenous transplant, from a donor. Of course you first have to find a donor, and this is not the TV show “House”!. My only potential match would have been a sibling, and she didn’t match. 
We waited about 6 months until a donor was found. I did not feel or act sick during this time, except after I had the maintenance chemotherapy I would be a little weak for a few days and I worked up until the day I went into the hospital. The transplant took place on October 5, 2006 at 10:30 at night and I went home the next day! This picture shows me w/ my bag of stem cells. It’s just a cup or so of blood, really, given through a simple transfusion, no pain at all. The donor was a German girl named Steffi who had just graduated from high school.
The transplant was a success, but then something developed that can be as lethal as cancer, Chronic Graft vs. Host disease. Basically, the donor bone marrow kill off the cancer, but does not yet recognize its new host (me) as its home, so it starts treating everything as foreign matter, the same way it went after the cancer cells. 

scar-like hardening of the skin

It attacks the largest organ, the skin, first. My skin started getting splotchy in colors of pink, purple and brown. I noticed on the underside of my arms there were long, hard areas of skin about 6 inches long and 2 inches at the widest and my knees and the skin under them turned brown and shiny, sort of like a scar, but not raised up. The GVHD was hardening up my skin. 
Next it moves to the lungs, stiffening them up so they can’t work as well. After about a year I was using oxygen full time. The last thing it will go for is the liver, and this is when you should put your paperwork in order, if you know what I mean. I never got that far, but it was 4 years in and out of the hospital with iffy situations, all that were my own fault for messing with my medications. All of this time, when I was the sickest and closest to death I had been, I did not have cancer. It was all side effects.
After 4 years I was off the oxygen and on fewer medications. The doctor cleared me to return to teaching because I was about to lose my job. I was too young to retire and we don’t have disability where I work.

After a transplant you wear a mask for months.

5 years is considered to be the magic time period when people will say their cancer was cured. In July 2011, 3 months from that magic date, the Hodgkin’s Disease reared its ugly head again. 
Now I just consider myself as having cancer all the time. Even if there is no sign of it on scans, it’s in there somewhere, hiding and waiting to jump out and say, “Boo!” I am in remission today, but we could find it at my next scan or in 3 years.  All of the chemotherapy I receive at this point are semi-experimental and have many side effects. I have neuropathy in my feet and fingertips, which affects my ability to do crafts, open jars, and walk. 
I also have very weak muscles. A couple of years ago I could not go upstairs to my bedroom and lived on the couch for 6 months while I did physical therapy. I crawled up the stairs a couple of times a week and took a shower using a bath chair. I was still working with all of this. I use a rollator walker to get around.  It’s best for balance because you have two handles, and better than a regular walker for your gait because you just continually walk smoothly. It has a built in seat and a basket underneath for stuff you might need to carry. It is so much better than a cane and I sing its praises to anyone I see walking with a cane. It really helps avoid that hunch people get from walking with a cane.

My nephews & niece make a welcome home sign.

In addition to what can be seen, the last 3 winters I have been hospitalized with a variety of things and missed a lot of work, forcing my school district to encourage me to look into a retirement system for people with disabilities. So that is where I am now, home full time, but able to go out and do things if I’d like.
The most recent development is the weakening of my lungs, which began the summer of 2014. At first I was just using oxygen walking a distance, but now I am on it full time. It slows down my outings because I have to plan how many tanks to bring and carry them, but that’s why the rollator has a basket!
I am always open to answering questions about any aspect of my experience with the health care system. I’ve met hundreds of wonderful, funny, sweet, educated people over the years and learned a lot about how the system works.

11 responses to “My Cancer Journey

  1. I lost my mum to cancer almost a year ago and her diagnosis came too late for treatment. She basically had no symptoms other than the usual aches and pains you get. I’m glad that you got the chance to fight it and give it a good kicking from time to time! Best wishes and keep battling! *hugs*

  2. I read your story with interest and at the end of it, extreme admiration. You are one “tough cookie” 🙂 and your story is an inspiration to all of us to become our own advocate, fight the disease with every possible treatment and keep a positive outlook. Thank you for sharing this personal journey and I must say that I love your blog and am glad I stumbled upon it from other blogs I follow.

    By the way, my husband had (has) melanoma cancer, between Stage 2c to 3, depending. He had 2 surgeries less than 2 years ago, they removed everything they should, and he goes for: PET scans, blood tests, an oncologist visit, and a dermatologist visit for hands-on screening, every 5-6 months now (used to go every 3 months). Radiation and chemo was not advised at this time. A clinical trial at Sloan-Kettering in NYC turned him down for not being the correct sought-after patient.

    He had the rare type that less than 5-10% of people get, where the tumor turns inward and grows under the skin so you don’t know it’s there or how deep it is. I try to educate people from time to time on my blog to get tested for skin cancer, even if you don’t hang out in the sun, even if you don’t see a typical cancer spot, and even if you have darker skin. We are staying positive and still “fighting the good fight” that it won’t reoccur, but have been told it is an extremely aggressive sort of cancer.
    Much good luck and best wishes being sent your way, Elizabeth!

    • Whoa! Never heard about the melanoma growing inward. Now I have something else to get checked out! I’m still at the 3-month check-ins. Way back I was on six months, but since it came back in 2005 there hasn’t been a month without some kind of a doctor visit. My last scan in April was originally read as clear, which put me on six-months until my next scan and visit, but when 2 more radiologists looked at it they suggested another scan within 3 months like always. I was pretty bummed, the first time I felt like that in all these years. It was like they took something away from me.

  3. My mom is a breast cancer survivor. Her road to NED was very long. Like you, she has had to adjust to a “new normal” in terms of taste buds, energy level, neuropathy, and other things. It is very tough, and you have my admiration for getting through it.

    • Thank you for your good thoughts. My mother is also a breast cancer survivor-twice, 15 years apart. Her second time was when I was preparing for my first transplant. It was summer and I never wore a wig, maybe a bandanna, and she followed the lead and liked it! She wore an itchy wig or turbans the first time.

  4. A friend of ours did a stem cell transplant at the same hospital I will always remember him writing about how ill he was as they killed off his sick stem cells. It makes me shudder. But, of course we would all choose to go through it if we had too.

    You have found out how strong you really are and what stuff you are made of.

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