Trish’s Fight Like A Girl Club (Non-Hodgkin’s Lymphoma)

I would like to tell you a little bit about me and my journey with the big ‘C’ and let you know that if you live, you will laugh again and it will be even funnier each time you think about it. I don’t know about ya’ll, but I always thought that I would never get cancer. And if I did, it would be the dreaded lung cancer (yes I was a smoker for 30 years) and it would take me quick. But no such luck with me. In fact, this is when I first started realizing that God truly has a sense of humor!! Of course you don’t learn to laugh and make fun of yourself until it is just about over. I am a 7 year survivor of Stage 4 Non-Hodgkin’s Lymphoma which had eaten my C7 vertebrae AND it had the nerve to take up residence in my spleen, so it wasn’t looking good.

You would have to know me to understand how much of a total klutz I am. In fact, it is so bad that I can be walking on a smooth surface and suddenly trip and fall when it should be impossible. It all started with a Christmas party at work; you know, the kind where there are tons of food and you have to get second and even third plates. I believe that I was on my third plate and had a plate for a co-worker in my other hand when I walked into my office. I never saw the box in the middle of the floor until I tripped over it and landed flat on my face. I thought that I was okay. That is until the next morning when I couldn’t hardly get out of bed. When I finally did, I noticed that my neck was really hurting and my arms and fingers started tingling and going numb.

Before I could make it to my doctor, I fell two (yes, I said two) more times. I went to my doctor, told her my symptoms, she did X-Rays and determined that it was probably a pinched nerve, gave me some muscle relaxers and we both thought that would do it. But oh no, guess again. She saw me in January several times, but the pain was getting increasingly worse. So she put in a referral for me (yes, we had a stinking HMO for insurance) to be seen by a neurosurgeon, which took about 3 -4 weeks to get it approved to see him. By this time, I was in agony and could barely walk. So I finally got in to see the neurosurgeon. He looked at my X-Rays and the MRI then made a comment that sent chills down my back. He was talking with his colleague and said ‘I wonder what kind of cancer this is’. But their first diagnosis was that when I had fallen it had crushed my C7 vertebrae. Boy, were we all in for a big surprise!! He put another referral in to do a spinal mylegram, which again would take forever!! By March 1st, I could not move due to the excruciating pain in my neck.

My family knew it was bad because I have a very high tolerance for pain. By this time, my husband and daughter decided that enough was enough. So they called my primary care physician and told her to get something done about getting the referral pushed through. She said for them to take me to the emergency room where we wouldn’t have to wait for the referral. This was when we ran into the first of many angels. She was a nurse practitioner who took one look at me and got things done. Before we knew it, they took me to do the mylegram, which entailed a rather large needle being stuck in my spine. Then I was turned upside down so the contrast would move up towards my neck so they could get some better X-Rays. By this time, they had pumped me full of drugs for pain that would knock an elephant out, but it was not even touching my pain. This was on a Saturday, and my neurosurgeon was out of town until Monday, so they admitted me and kept giving me drugs. But it was unbearable. At this point we still didn’t have a diagnosis, but a doctor came in and said that they suspected cancer (there was mention of that horrible ‘C’ word again). We still didn’t believe it! Doctor continued talking and showed us the X-Rays. He pointed out that where my C7 should be looked like a spider web but no bone… I was scheduled for surgery the next day. When they cut the front of my neck open, they found the cancer. They then placed a donor bone with screws and plates but could not remove the tumor because it was entangled in nerves and had began eating one of my other vertebrae. God and I had a talk the night before, and I knew that it was going to be a win-win situation. If I didn’t survive the surgery, I knew without a doubt that He would be waiting to take me home and if I did survive the surgery, I also knew without a doubt that I would be healed. So thus began my year long journey (here again was His sense of humor because even though I knew that I would be healed, I didn’t know what a long road lay ahead)!

I only stayed in the hospital for 2 days, but I was still in unbearable pain. I was waiting on my first chemo treatment but lo and behold even more torture was soon coming my way. I was waiting on a port to be placed in my chest (what the heck was a port and why did I need one?). I started my first chemotherapy treatment about a week after surgery and my oncologist told me that the pain would disappear after my first chemo. Which it did, but we had just begun the journey, so who knew what the future held. The port was placed in my chest the next week (this is pretty much the beginning of the humorous things that began to happen)! I went to a surgeon who assured me that he had done a thousand ports on an outpatient basis and mine should be no exception… yeah right! They could not knock me out due to my neck surgery because when they knock you out, they have to intibate you so-o-o they gave me some pretty good drugs, threw a pillow over my face, tied me down and it began to look and feel like a horror movie. I would peek around the pillow and glimpse at the doctor on top of me pushing with all he had trying to force the port in place. When it didn’t go in on the right side, he proceeded to the left side and FINALLY got it in place. When my husband and daughter saw me in recovery, they both came unglued due to the fact that I looked like a war zone on my chest and neck where there were massive bruises and cuts. I wish at this point I could tell you that this was the worst thing that happened, but it was only the beginning!

When I went in for my second chemo treatment, the lovely chemo nurse explained that one of the 3 chemotherapy treatments that I was taking (appropriately called ‘Red Devil’) would be the one that would cause my hair to fall out by the 3rd or 4th treatment. No big deal, I could get a wig and no one would know, right? Ha, I could see Jesus laughing at me while loving and strengthening me for what was to come.  Like I said, I was totally prepared for the hair on my head to fall out, but then I was feeling pretty good because I had made it through my 4th chemo and still had hair! That was a very short lived dream because as I was sitting there being hooked up to my 5th treatment I ran my fingers through my hair and it started coming out in clumps!! My daughter took me to the mall to purchase a wig, but we decided to get my head shaved so it wouldn’t be so clumpy looking. The poor beautician cried the whole time. Little did I know what was still to come in the hair losing saga. You lose EVERY hair on your body and to add insult to injury, when you have to pee, it suddenly dawns on you why the good Lord gave us hair there. Because no matter how careful you are, it goes everywhere, all over the toilet, and down your legs.

Oh yeah, the wig that I so painstakingly picked out; when I put it on, my family laughed hysterically because even on my best hair day it didn’t compare to the fake hair… just wasn’t me!! So I either wore nothing or occasionally would wear a bandanna. I got some pretty strange looks from people.

I had kiddingly told my chemo nurse that if anything could go bad, it would for me, so of course it did. I woke up one morning and my left arm was 3 times its normal size and was very hot to the touch. No one had a clue why, so back to the hospital I went to endure more tests. They did all kinds of tests and found nothing. I even had the x-ray machine collapse on my head! Finally they sent me for an ultrasound and found a large blood clot in my jugular vein so I now had to take shots in my stomach to thin my blood and hopefully to dissolve the clot.

So, I survived the treatment only to find out that they weren’t done torturing me yet (truthfully I am ever so thankful that my doctor was so aggressive in attacking this horrible cancer that had taken over me)! After 6 months of chemo, it was decided that just in case a tiny piece of the ‘C’ had somehow survived, they would send me to another oncologist to have a stem cell transplant (before you gasp and think that it was embryonic stem cells) it was my own stem cells that would be harvested then put through rigorous tests to remove any tiny remains of the ‘C’ stuff and then be put back in me. Sounded easy enough but I should have known. After they tested every possible organ in my body to make sure that the chemo had not damaged anything, they hit me with double the chemo in one week compared to having it stretched out over 6 months. Before that, I had to have an outside double port placed on the right side of my chest that would stay for 30 days! Oh and of course, by this time I had about 1” of hair on my head which I was very excited about. But it was short lived because after the week of chemo everything fell out again! I was also told that after they gave me my stem cells back, I would have 10 days for them to ‘kick in’ and do their thing and if by some rare chance they didn’t, then I would be dead soon after that because with no immune system, my body would turn on itself and shut down. So of course just because that is the way thing go for me, it was the 10th day and it wasn’t looking good because my counts had not started going up, but at the last possible minute they kicked in and started doing their thing. So I finally thought that I was done, but oh no, there was one more torment ahead of me… the dreaded radiation!! I had about 2 weeks off and then started radiation. I had to have 23 on my neck and 17 on my spleen, just when I felt like I could breathe, they took me back in and tattooed my neck and stomach. At this point, I thought the least that they could have done was make them cute tattoos instead of dots. But they saved the best for last. I was laying on a table and with no warning, they threw a hot mask on my face that began to shrink to fit my face and began drying. It was freaky because by this point I had become claustrophobic and was beginning to panic. Right before I went over the edge, they took it off. But I had to wear it every time they did radiation, they would put it over my face and lock it down to the table so that I could not move an inch. About halfway through, I totally lost my voice (which no one had mentioned this as a possible side affect) and if you knew me, you would know that it was a fate worse than death for me to not be able to talk!!! And to make matters worse, some people don’t ever get their voice back! YIKES!

By this time, we know how bad my luck is, but my voice finally returned about 2 months later. Then I started being nauseated all of the time and would just suddenly throw up with no warning and obviously it didn’t matter if I was driving or walking; I would just suddenly throw up.  I finally found out that when they radiate anywhere near your stomach this is what happens.  The bad news is that 7 years later, it still happens, but good news is that it is getting much better. And just about last but not quite, my fingernails and toenails started falling off .It was really gross, I felt like a snake shedding his skin.  I asked my nurse about it and she laughed and said that it is a rare side affect of chemo, because your nails are made from Keratin (the same as your hair).

I also have no feeling in my fingers or toes due to neuropathy caused again by the chemo. BUT am I thankful and glad to be alive? Most definitely!! Would I do it again? Who knows, hopefully I will never have to make that decision again.

I didn’t intend to go on and on but I hope that ya’ll will feel free to comment or even tell your survival story. I for one am blessed and feel that God wants me to share my story. I have been honored to be able to help people through treatment and have been able to share my testimony with some spouses that were hardened towards God and His people.

Trish
Oklahoma
Submitted 10-13-2012

The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

This article is intended to convey general educational information and should not be relied upon as a substitute for professional healthcare advice.