Posted on December 18, 2014
Update posted 12/18/14 by Gwendolyn Westlund
I've been informed by a great many people that they'd like to know my story from the beginning; I didn’t realize I hadn’t been detailed in my cancer and history leading to the CHF and really thought it would sound like complaining. My apologies this is overdue, I've been working on it for three weeks. It's a lot to remember and I had to ask some people to fact check. That said; let's start at the very beginning, a very good place to start.
I had always had some kind of issues with my health. In Jr. High and high school it was always something, my weight would yo yo with no change in diet, I would be extremely fatigued, have stomach problems, migraines, etc. Into my Jr. year of high school, I would develop more extreme swings in weight, sleep patterns, and dizzy spells. This would go back and forth for years, increasing as I went from a senior in high school into my very early twenties. While I begged my physicians to figure out what was wrong with me, & insisted on testing, I went through blood tests, scans, MRI's, upper & lower GI imaging, with no answers.
Things were getting worse, I was too weak to drive my car and was experiencing black outs in vision, thus losing days at work increasingly. Unfortunately the high-end department store I worked for a "top 100 to work for" was less than understanding and my department manager actually said I needed to figure it out or suck it up, because with no diagnosis, it was my health or my job. This was heart wrenching, I had the job I wanted and I was good at it. I was a counter manager at one of the leading high end department stores in America, with brands I wanted to work with & was good at selling. I was the youngest counter manager they'd ever had and I earned it. I always had a doctor's note, but not an official diagnosis and this would be my downfall? NOOOO! I needed someone to figure out what the heck was wrong and fix it fast!!!
Meanwhile the Doctor's labeled it as depression, aggravated by hypochondria & a mild chronic fatigue syndrome, but that was an unofficial diagnosis with no treatment available. They recommended Zoloft. I told them I wasn't depressed, at least not before they kept blowing me off & calling me a hypochondriac. I'm begging, someone to help me! Take a tissue sample, anything to rule out cancers, nerve disorders, something hard to find?!? Help because I know my body and something is wrong! But, yep, I sure as hell was depressed now. *Sigh*
Well, one day at work had a bit of a black out with my vision again, felt a migraine coming and was rubbing my neck and base of my head and at the bottom of my neck, I felt a bump. A very large, round mass sticking out the side of my neck, almost like I'd swallowed a golf ball. I ran to the next cosmetic counter and asked one of the older women, someone I knew to be a mom and grandma, if it was a swollen gland. She said not like any she'd ever seen & I had suspected that'd be her answer. I saw the doctor the next day and they actually said to me "it may be a swollen gland, let's wait a few weeks to biopsy, it may subside."
A side note looking back - I cannot believe the amount of crap I let employers and doctors get away with in the stupidity of my youth! I want to punch a 20 year old me in the face. Please for anybody reading this, make sure you educate yourselves and your children on their rights as employees and patients! We all need to realize that doctors are really educated, highly paid, employees. Our employees, they are contracted per service per client and can fired, just like anyone else. If they aren't doing their job correctly it could very easily cost us our lives! Be careful, be educated, and speak up. 20 year old me, Ugh! Apologies for the side track.
Back to the “swollen gland”, the next day was a huge event for the cosmetics department and we were booked with appointments! Things were buzzing and everyone running around, makeovers galore! I was 20 going on 21 and the youngest counter manager this store had ever had. I was not going to quit! My body decided to defy me. I blacked out and went down in the stock room; my neck had swollen twice its normal size on the left side - where the lump was. I was taken to the ER and the doctor there said he didn't want to panic me, but he thought it may be a lymphoma. I said "THANK GOD", he looked at me paralyzed by shock and I said "it's just nice to finally hear someone say it's something other than in my head, I figured it was cancer." They scheduled the biopsy for the next day.
I finally had a diagnosis; stage 2 Hodgkin's Lymphoma at the age of 20, and started treatment one day before my 21st birthday! Work was less than pleased, I called to make them aware that we had finally found the issue & it was malignant. I went in a couple days later to fill out short term disability paper work and was told my position had been closed & therefore I had been terminated, not fired, terminated due to lack of work. I was three weeks shy of a year, making me ineligible for FMLA. My managers did not come out of their office. No one sent a card or message, nothing. It was quite sad and pathetic actually.
Well, speaking to lawyers later in life, I realize I should have sued and probably wouldn't have such a continued financial burden, but that wasn't the case then, I was given bad advice by a relative I trusted & considered my counsel. However, I was lucky enough to have said counsel make a phone call on my behalf and get my position reinstated long enough to get my Cobra and disability benefits enforced, which I'd paid for so I was grateful enough for that.
The oncologist told me I was very blessed that Hodgkin's Lymphoma is a highly curable cancer and a slow moving one. To be a stage 2, it must have been there for some time already! Hmmm...Like since high school?
However, since it was a stage 2 and it had gone unnoticed in scans and blood work until the tumor showed itself, and being that the lymphatic system runs throughout the body, I was advised to do one heavy round 5 days a week for eight weeks from above my ears to my rib cage and a second round 5 days a week for 6 weeks from below my ribs to below my pelvis. I fought it at first with a concern for having children later and was told very bluntly that a dead woman couldn't have babies. Pretty harsh for a young woman who'd day dreamed about what her 3 or 4 children would look like, with her husband & their "normal" family, their small but warm home in suburbia, & of course the family dog. A fantasy she'd had since she was 11, as most girls do. What can I say I was 21, I also thought by some miracle, my father set aside money for my wedding or college and I was supposed to be married by 23 and a baby on the way by 26! Oh to be young and naive.
Anyway, I had always been sensitive to sun, medications, even a sip or two of alcohol. That said the side effects of radiation treatments were described as very minimal and nearly never occurred. The first day I experienced extreme and violent vomiting which would continue on a regular basis. Anemia, constant colds, flu, sinusitis, migraines, chills, cold sweats, loss of appetite, body aches, hair loss, and radiation burns which led to charred black cracking skin on my neck, chest, & underarms. The radiation burns, were apparently accelerated by my lotion and deodorant, which it said somewhere in the 20 some odd page booklet they gave me in fine print. It didn’t occur to someone to say anything while they were complimenting me on how I was the prettiest little cancer patient they'd had and how great I smelled all the time. What's wrong with people? The burns and scarring I would find would come to haunt me in other ways.
I went from my heaviest @ 165-170lbs on a 5'2" petite frame to 97lbs - a weight I don't recall being beyond the age of 10 years old. I was buying clothes at the Gap Kids, which I have to say I thought was pretty freaking sweet, considering my previous low had been about 130lb. Finally I was the skinny hot chick, and all I had to do was almost die...okay, well that part sucked, but I try to look at the glass half full. But then there were the burn scars, thank God when I went back to work two years later I found a dear friend and a man I would later work with for 5 years and later on and off throughout my career. He gave me a product the company I ended up working for made and said the main ingredient is what they keep organs in prior to transplant because it has such great oxygenating properties, it revitalizes and restores and detoxifies. I checked with my doctor at the time and he said that was correct. I don't know if that's they case anymore but it worked! That and some mild exfoliation treatments and it completely resurfaced my top layer of skin at least to the naked eye. You can still see the scar tissue when I do any kind of self tanner - as it fades I look like a spotted leopard because it still grabs the scar tissue. Anyway, two things that would later come back into play, future scars and organ transplant, kind of freaky now that I'm writing it out. I stayed thin for a long time and had a lot of issues with constantly catching colds, flu, pneumonia, infections, etc. & I would be hospitalized periodically.
In March 2008, after an original diagnosis of sinus infection, I drove myself to the emergency room and I was admitted with double lung pneumonia, my body wasn’t able to get rid of it. I felt like an elephant was sitting on my chest. I had complained that I felt heavy and very fatigued to my doctors and they said it may be chronic fatigue syndrome something to that affect. After two weeks of oxygen, swelling, IV antibiotics, and a losing battle with pneumonia, they finally came to the realization that I had Congestive heart failure and a prolapsed mytro valve brought on by scarring from radiation therapy. My ejection fraction was 30%. The angiogram didn’t show blockage, however my body did not like the anesthetic and I coded. I was dead for about a minute and a half, you’ll come to learn that I use a three minute rule now. I didn’t know what happened and when I woke, I told the nurse I felt like they drop kicked me! They couldn’t tell me what happened until my doctor was there. From then on I warned anyone performing a procedure that I was nearly allergic to anesthesia and narcotics due to the severe reaction my body has to them. Doctor’s tend to think they know more than you and these little warnings are “cute” unless diagnosed by another physician as an actual allergy, so make sure you’re taken seriously.
I spent the next five years working with a wonderful cardiologist, changed my diet, took my cardiac medication and was very compliant because it all kept my heart in check, despite the drop in my blood pressure, dizzy spells & fainting. These side effects though worth it in the long run, would not do me any favors with future employment. I would be hospitalized with heart failure at least once a year, usually overnight or a couple days for a “tune up”. They’d get fluid off of me and get my blood pressure stable and send me back out. My ejection fraction at one point got as low as 25% and I was told if it reached 20% they would have to put me on a valve transplant list. I let them change my meds, worked out, really stream lined the diet, quit any remaining bad habits and managed to get my EF back up to 40% in 2012 and a goal of 60% by 2014 1year after my wedding so we could attempt a family. What’s the saying? “Life is what happens while you’re busy making other plans.” Couldn’t be more true.
So September 2012, finally a great job with potential and good people. October 12, 2012, I marry my soul mate. Literally one of my best friends, my geekmo, my catspajammas, & the love of my life. Things are finally looking up. February 2013, it gets better! The office manager is moving out of state and leaving on great terms and will train me as the new manager! A raise, a great title, a job with even more potential and I love it. I love the bosses, I love my job, I’m happy with the money, I work extra hours because I truly want to do a great job! What’s that other saying? “If it seems too good to be true, it probably is.”
May 9, 2013: I say to my company’s VP very calmly “don’t panic, I’m okay, I just need someone to drive me to the ER for a tune up, worst case scenario I’ll be back tomorrow.” Famous last words! My first time back was yesterday, December 17, 2014 to volunteer for a holiday party the company puts on every year for the Off The Street Club in Chicago. One of the things I love about them.
This brings us through the various cardiovascular surgeries, LVAD, the coma, the lengthy stay in the hospital, a couple more near death experiences, and eventually the heart transplant and the escapades that ensue from that point on.
Lots of doctors appointments and a biopsy before the end of the year and I still need to do a quick cost of care recap. So look for another update or two coming very soon.
As always thank you to all of our loved ones and supporters!
Be well & God Bless.