My Story

At first I wasn't going to post this story. But Adam, Ian and I are taking part in the Leukemia & Lymphoma Society's Light the Night Walk on October 8th in downtown Lexington as we have a little something to celebrate - but also a duty to bring awareness to a very important cause as so many cancer warriors do not get their celebration - or their victory is short lived. Many of you have heard things from others, but never MY version. At the time when I was sick, I answered questions quickly and changed subjects because I didn't want to upset anyone with EXACTLY what was happening that day or that week. Now that this is in the past and I am HEALTHY, I feel like I can talk about it with you without freaking anyone out, hopefully.

This is my story.

On November 19th, my day started out normal. Ian was two weeks old. I changed about 12 diapers, probably fed him 8 times, and a friend came over to visit and meet Ian since I was at home on maternity leave. After Adam got home from work I complained, again, about a nagging pain in my chest that had really started to get noticeable since Ian was born. We had planned on going out to dinner that night (yay Culver's!) and on the way there Adam convinced me to go to an Urgent Treatment Center saying "They warned you about the possibility of pneumonia developing post-op, rare, but that's serious. It kills people, you need to get this checked out". Fine. So I went. The doctor at the clinic was convinced I had something called Pericarditis, an inflammation of the sac surrounding my heart. She told me that I would need to follow up with a regular doc and take an Ibprofen daily for several months. She also told me although extremely unlikely, I could have a blood clot in my lung and was therefore sending me to the ER to get a CT scan, immediately. Ugh. In hindsight, I would have given anything for that blood clot. But nope, what they found is even more rare than a clot - a tumor the size of a baseball that was growing just above my heart... This was discovered on a Friday night. I had to wait until a Monday to get an expert's opinion on my scans. Was it the deadly, aggressive cancer the doctor mentioned?? Was it the scar tissue of a parasitic twin left over from when I was an embryo? (yeah, that got suggested, by the attending physician none the less!!!) Or more than likely, and the "best" option - was it some sort of lymphoma?

Monday morning. I called the oncologist's office the ER gave me the name of. Told I couldn't get in for weeks and even then, I had to have a referral from another physician. So I called my OB's office. I called my Endocrinologist's office... left messages with nurses. Begged someone, anyone, to look at my scans and refer me to see the oncologist! Finally, later that morning I got a call from a nurse. I would be seeing the doctor that afternoon! She had even spoken with my soon to be oncologist. He had reviewed my scans and wanted me to know that it looked like "probable Hodgkin's Lymphoma" aka - "good news". Good news? Maybe in YOUR world cancer man, but not mine!! I met with the doctor that day, for over 30 minutes (record breaking in the medical world no doubt). He said I most likely had the "good cancer" - my chance of a forever cure was around 90%. Well fabulous, let's get the show started!!! Little did I know just how LONG it would take for that to happen....

I needed a biopsy, ASAP. I couldn't be treated until Hodgkin's was confirmed - and the cancer's subtype was determined (there are 4). The very next day, bright and early, I headed to the hospital for a "fine needle biopsy". To summarize, it involves sticking a giant needle into the suspected malignancy and drawing out samples. In my case, this was like hunting for a needle in a haystack inside my chest as Hodgkin's tumors are made up of only 5% cancer cells - the rest is inflammation. Let me mention that ribs/cartilage cannot be numbed and the "excavation process" took an hour. While conscious. I was at the hospital for 8 hours but don't remember any of it afterwards as I was passed out. Apparently I saw Adam in the hall on my back back to my room and cussed him out for not being at work :)

That biopsy did not work. My samples were even sent to UK to get a second opinion. Not a damn thing was found except for "suspicious inflammation indicative of lymphoma, not confirmed". I needed another biopsy. The doctor tried to avoid the route I was about to take in the first place because it was "more involved". Understatement of the year.

Meanwhile, the doctors had to be sure my body could withstand chemo. Luckily, my heart checked out okay. My lungs proved acceptable. I was given a Stage 2 diagnosis - meaning the cancer was limited to only my chest - just both sides of my chest. GOOD.

A month, to the day, after I had Ian, I checked into the hospital. AGAIN. This time I was to have several cancerous lymph nodes taken from behind my sternum in an attempt to officially diagnose me so my insurance company would pay for the drugs. At the same time, I also had a bone marrow biopsy - thank god for an empathetic oncologist - he made sure I was OUT when that one occurred... I was inpatient for two days, away from Ian. I wasn't able to move my left arm as they had to open my chest... then crank apart my ribs to fish around in there. I have a lovely scar on my chest from the procedure. Maybe some day I will have plastic surgery to get that one fixed!

Finally, a diagnosis. "Nodular Sclerosing Hodgkin's Lymphoma". The most common subtype of the blood cancer. Most often seen in females ages 18-35. Textbook case.

I started chemo when Ian was 6 weeks old. I went every other week for 4 months, or eight treatments total. I received 8 drugs over the course of 4 hours. Four were chemo, the other four were to prevent side effects (aka instantaneous vomiting courtesy of Dacarbazine - which I never experienced!) I was never able to get a port put into my chest to receive the drugs as my tumor had completely shut the main artery to my heart. So instead, I had a PICC line put in my left arm (another procedure while conscious...). My chemo regimen could not be put straight into the body via regular IV as it literally burns the veins in the arm. Why it can be dropped directly into your heart without immediate problems? No clue. Having a PICC was probably the thing I complained about the most during cancer. You cannot get it wet. It has to be flushed every week or else clots form easily. The skin underneath the dressing cracked and bled from being covered for months. When I was trying to feed Ian, his head was always bashing into it which can cause infection, thankfully, that never happened! My only picc reminder now is just another scar on my arm... I love showering without saran wrap!

One of my chemo drugs, Bleomycin, is notorious for causing lung damage. So once a month I had to meet with a respiratory therapist to check out my lung function. Thankfully, nothing happened. Interestingly, my lung function IMPROVED during chemo, by 10%! RARE.

Starting with my second chemo cycle, I started having major problems with my white blood count. Chemo kills fast growing cells in your body. It doesn't differentiate between cancer, blood cells, hair, etc. If you don't have enough white blood cells, your body cannot fight off infection. Even normal germs can kill you. This doesn't happen to every chemo patient, but I was part of the lucky bunch! My body just couldn't recover fast enough for the next treatment. Treatments have to stay on schedule or the cancer can grow. If you receive chemo with low counts already, a regular cold can put you into the hospital and kill you rather quickly. So I was forced to get a lovely shot, called Neulasta... I received this shot ($24,000 per syringe! Thanks insurance!) the day after every infusion. It stimulates your bone marrow to make new cells extra fast. This process makes you extremely achey, like you have a bad flu. But it is over in only about 5 days.

Looking back, chemo was just a huge inconvenience to my life more than anything else. I only threw up once. My first week after each treatment I felt like I had the flu and was extremely nauseous, tired, and I thought my stomach was going to explode from pain. One of my drugs caused my feet to go numb a lot which was a little amusing. By the second week..... I felt almost normal. The effects of chemo were cumulative. Infusion #1 was a breeze. Infusion #8 was like a truck ran over me. I like to think that is because the cancer was long gone and only healthy cells were dying.

Radiation lasted three weeks. Not much to report there. It took more time to "map" my treatment area than it took to actually treat me. I received radiation from the bottom of my neck all the way down to the very top of my liver. This includes my heart and lungs. Each treatment took 15 minutes from the time I left my car to the time I got back in the driver's seat. I got zapped in the front. Then the machine rotated around the table and I got zapped from behind. I got an interesting burn mark on my chest and back. The most exciting part of the experience was the tornadoe siren that went off in the middle of my treatment. You're not supposed to move an inch during the process. So I just laid there and yelled "um, HELLO?!?!? WHAT NOW?!?" I had to finish the treatment! The only effect of radiation I am still experiencing is "L'Hermittes Sign" - when I look down I get a strange electrical pulse sensation running from my knees into my feet. It doesn't hurt, but sure is strange! This only happens when exercising and should subside over the next several months. Perhaps I should avoid exercise ;)

As of today... I am in remission. It's a little unbelieveable that I have transitioned from visiting the hospital three days per week for six months.. down to about only six times/year. I will see my oncologist every 3 months for two years. I will get a full body scan every six months during that time as well. After two years, blood work every six months for five years. Then once/year for the rest of my life. I will be considered 'cured' in 2016. About 20% of Hodgkin's patients relapse. Out of those people, only 50% survive - but my doctor expects me to do extremely well, as I am already!

While treatment is DONE, I have to be monitored for the rest of my life. My chemo regimen and radiation therapy are extremely toxic. I am at increased risk for leukemia, heart failure, lung cancer and breast cancer. I get to start breast MRIs in five years. If you smoke, you better not come anywhere near me.

A lot of people may not understand me when I say this - but cancer affected me in a GOOD way. I actually feel lucky to have had this experience at a young age. I appreciate the small things. There are so many things I want to do in life - and I am DOING THEM. I refuse to live with regrets. Life is too short and unpredictable. Had cancer NOT happened to me - I wouldn't be watching Ian grow up - he would have been in daycare while I slaved away at a job that paid the bills - but left me wondering if the field was the correct choice. Had I never had cancer I never would have met such an amazing group of friends. I wouldn't have gone back to school to follow a childhood dream. There is no way I would have ever ended up this happy. So cancer, in a strange, twisted way, THANK YOU!

Here are some pictures of the journey:

This is a PICC line and was on my left arm, just above the elbow for four months. My chemo was administered through this. Every time I fed Ian, his head rested on this thing. But thankfully, since it was winter, he got some padding via my sleeves AND I was able to hide it in public under sweatshirts! GROSS.

Chemo #1, getting Adriamycin (aka, "The Red Devil"). The extra precautions with all of sterile stuff/gloves had to be taken because if it leaks out, it burns your skin. OFF. I still do not understand how it was okay to put that straight into my heart. But since it's still beating, I've stopped caring. I'm just grateful.

Got my hair cut in anticipation of the shedding. When it actually went, I'm pretty sure the cat and I were tied when it came to the contents of the vacumn cleaner.

Last chemo treatment, EVER.

Not directly related, but who doesn't love a beer-ponging Mommy & baby? This was about 10 days after the last treatment. Chemo upswing!

If you're interested in walking with my family or making a contribution to the LLS, visit my team page for our October walk - http://pages.lightthenight.org/ky/Lexingtn11/TeamMeghan