My Story
In August of 1997, I noticed a lump on the left side of my neck. It was about and inch long, not to firm but noticeable. I was assuming that it was just a swollen gland nothing more, but since there wasn’t any pain associated with it, I was beginning to wonder about that. So I set up a an appointment with my doctor. At the time I was only 33, had two small children aged 3 and 1-1/2, and I had no intention of leaving them just yet. I guess it was from that point, that my gut already knew the answer to what was really wrong with me. I had a tumor. And this might very well be the battle of my life.
A few days later when my doctor saw it, he didn’t waste any time in coming right out and telling me that it was cancer. (And this was before any tests were done.) For insurance purposes, I had to go through several other tests just to rule everything else out. Test after test, the results came back negative. Now we could move onto cancer testing. A biopsy was scheduled on the lump so the tissue could be tested and we’d have a better idea of what we were up against. The results, a lymphoma. They weren’t sure which type, so they had to send it out to another lab to figure it out. By this time, I had already hit the books to find out more. I was told that with Hodgkins disease, the treatment is just radiation. Non Hodgkins was a little more difficult to cure and you’ll need to receive chemo and radiation treatments. Well guess which one I had? That’s right, Non Hodgkins. The more difficult one! You’ve heard the remark, “If it wasn’t for bad luck, I wouldn’t have any luck at all” well that’s me.
As I sat there letting this info sink into my thoughts, I wondered what was going to happen. I had no desire to leave my kids, so death was not an option for me. After a short cry just to let all my emotions out, I took a deep breath,
straightened my back and went in with the attitude that I was ready to battle the devil himself, and I WAS GOING TO WIN!!!!
During this time, the tumor was growing. Enough so that it started to block the flow path of the lymph fluid in my chest. I’d wake up in the morning and my face would be swollen. During the course of the day, gravity would pull it back down and I’d look normal again. The radiologist I had to see, looked at me like I had two heads when I told him my face was filling up with fluid overnight. He didn’t believe me, and had the nerve to tell me that I was imagining it. I think I’d be the first one to know when something was wrong with my own body! Two days later, the fluid found
another place to go, my right breast started filling up. You’d be surprised to see just how much they really can hold! Still, there wasn’t any pain at all. I called my doctors office that morning and said,”I think we have a problem”, well the nurse didn’t waste any time getting me into the office that
day. As I tried to cover my temporary deformity, (half of me was normal, the other side was a Dolly Parton wanna be!) the nurse was stunned and couldn’t believe that I was laughing about it. What else was I supposed to do? Laugh!
Make light of the situation and that's just what I did. Within minutes I had appointments set up that day for my first radiation treatment. According to my doctor, we had to move quickly on this because he was concerned that the
tumor was closing in on the vein to my heart. And if that happened, well, we know what that means.
The radiologist made blue tattoo like markings on the area that they are going to work with. These dots will never come off of you so remember that. I have two down from the neck, he thought he was going to put one on my chin but
he found out differently! I had no desire to hear for the rest of my life that I had pen ink on my chin. For anyone who doesn’t know what a radiation is like, you lay on a table and they shoot a beam of light into your body. You feel
nothing. What some don’t tell you (at least with me) is that radiation will damage the tissues in the area that they hit. That I found out later. But my first treatment was over in a few minutes. And that night, I woke up with this feeling in my chest like I had just swallowed drano and it was bubbling inside my chest. Talk about a weird feeling! It didn’t hurt, it just felt weird. It released something inside that allowed the fluid to start draining again. I had to have a few more treatments to complete that set before I was to start my chemo treatments. At least we were off and running!
Before I could start my treatments, I had to have another CT scan along with a bone marrow test. They had to make sure that my cancer hadn’t spread. At that point, the CT scan did show that it spread to under my right armpit. The
bone marrow test however, is one that will stay with me forever. They numb you up from the waist down. Take a small instrument and drill into the back area of your hip bone. Use a long thin spoon like tool to slide into the hole they
made, rock your hips back and forth while they scrape the insides of your bone. Even though you are numb and there isn’t any pain, you can still feel what’s happening to you. It’s been twelve years for me and as I write this, I can relive it as though it happened yesterday. Then they roll you over and do the other side! It takes a while for the numbness to wear off. I had to have help walking out of the hospital because I still couldn’t feel my right leg
enough to support my own weight. Results in, bone marrow tested negative for cancer cells.
Non-Hodgkins cancer as well as others I’m sure, are not compatible with radiation. The radiation has to be out of your system completely before the chemo is allowed to enter the body. So I had to wait a few days for my treatment. The treatment for me (at that time) was a combination of three different medicines that would be sent through an intravenous tube. They were Vincristine,Cytoxan and Adriamycin. The last of the group was the most severe, and it would cause me to lose my hair in two weeks. I was also told to drink a lot of water afterwards to flush it out of my system. They couldn’t stress that enough. I was also supposed to take Prednisone. This leaves a horrible after taste in your mouth and the only thing I found to take that away was to take the pill with orange juice. You might as well know now, I’m a bad patient! If something doesn’t taste good, the chances are pretty good that I won’t take them! Each of the meds have their own list of side effects, your doctor or nurse will be happy to give you a list of them. Now regardless of what type of cancer you’re being treated for, I’m going to tell you to gargle with salt water after everytreatment several times a day. I developed the worst sores in my mouth. It made it almost impossible to eat or drink anything, and they lasted for several days. I lost weight that I couldn’t afford to lose from not being able to eat. From that day on I used the salt water and I didn’t have the problem again.
Now I know you’ve all wondered about things in your life. And that you’ve walked through doors not knowing what will happen to you next. Well, sitting in that chair waiting for your first chemo treatment is no different. They are going to inject you with poisons, plain and simple. The drugs are designed to go after and kill anything they deem a threat to your body. Although the drugs have come along way since I had mine, they still haven’t made them to where they only go after the cancer cells and leave the good cells alone. You sit there wondering how your body is going to handle the treatments. The nurse/doctor should tell you a list of things that could happen to you. Some of them right
away, others of course, later. They just want you to be informed. Not that it can change anything, you still need the treatments to live. With the drugs that I needed to have, my doctor informed me that I needed to have a port put in
because the drugs are known to burn out veins. With a port, they can directly inject them into that and save the veins in my arms. A port is a small unit that will need to be surgically placed in your chest area just under the skin. It’s
somewhat hollow inside and it has small wires that they connect to your veins so the chemo can travel around from there. You will feel and see a small raised bump where they place it. After a while, the tissues in that area will start to
grow over the unit. (at least they did with mine) My doctor told me that it would have to remain there for at least six months. Do yourself a favor, pick a nice young surgeon who’s really good at his job. You want to be left with a small white line that is barely visible for a scar instead of something that looks like Frankenstein did it. There is also the possibility that the veins in your chest will be a lot more prominent after your treatments. (Color wise) Your chemo
treatments will more than likely be done by intravenous. And it will take a few hours for the process to be complete. Bring reading material, knitting etc. or bring a friend to chat with. And don’t forget the water!!!!
Your doctor may tell you that there will be hair loss. I was told that mine would start to fall out in two weeks, and two weeks to the day it did start to thin. Not clumps like you hear about, just thinning, quickly. And each individual hair felt like a needle poking my head. When I would lay down, it made a crunching sound and my head felt like a pin cushion. It was time for the hair to go. I had my sister take her clippers and cut it all off. I’d have to say, that all through this ordeal, I did have a few times when things were really hard for me to handle. The first time I heard that it was Non-hodgkins and my tumor was just shy of being a foot long, and the second, sitting here in this chair waiting for the clippers to start. She was good, she placed them at the back of my head, and said,”Ready?” because we both knewthat once she started, there was no turning back! Now I knew that it would all grow back after the treatments were all over and my system was free from the drugs, but it’s still a hard thing to do. I now have a new respect for men who shave their heads or are bald. They really feel the cold!! After she shaved my head, the discomfort was gone. I had already purchased a wig to wear for when this would happen. And I had her cut and style my hair to match the wig, so
no one was the wiser when I just started wearing the wig. It sure was easy getting ready after that! My hair was always ready for me! Slap a little makeup on and I was good to go. There's a good chance that you will lose your eyelashes and eyebrows too. I ended up with four eyelashes on each eye. Thank God for eyeliner! My son was watching my sister shave my head. When she was finished, he just looked at me, I asked him if he wanted Aunt Paula to cut his hair like mine? He said,”No”. Well, at least he was honest!
Hopefully, your doctor will give you something for the nausea that usually comes from receiving chemo. I received some with the treatment and a script for pills that I could take later. My advice to you- TAKE THEM. They are given to you for a reason. Don't try to go without to see if you can handle it or not, it is far easier to just take them and not feel sick then to try to keep them down when you can't. When the nausea kicks in, it will be with force. Don't put
yourself through that. Learn from my mistake. You may also have to get shots for a few days afterwards to help your body maintain red blood cells. I was given Neupogen injections for ten days following my chemo treatments.
Thankfully, my mother's wonderful friend Pam was able to give me the injections I needed so I didn't have to go into the doctors office. Neupogen also has side effects. You can suffer from bone and skeletal pain. The only problem I had with this drug was it made my entire mouth hurt. Both jaws and teeth. It hurt to chew. (cancer really can be a great weight loss program!) I couldn't wait for the ten days to be over. And if I got to skip a day, it was pure bliss! This drug was necessary to keep me out of the hospital and to maintain a fairly normal blood count. I couldn't afford an infection at this time.
It seems my system started getting used to the chemo treatments. Each one seemed to get a little easier each time I went. The side effects lessened, I wasn’t as tired as I had been the previous times. I was just able to deal with it so much better. Luckily for me, my body responded very well to the treatments. They say that the faster a tumor grows, the faster it responds to treatment. My cancer disappeared completely and I didn’t have to complete the full course of treatment. My doctor did want me to have a small unit placed surgically into my chest to collect good red blood cells in the event that this cancer came back. (They say that there is a 15% percent chance that it will return) I told her "No, I had already put my body through enough and I wasn’t going to do that." With the odds only being at 15%, I’d take my chances. And if it did come back, then I’d cross that bridge when I got there. So far, so good! I also wanted the port removed. She requested that I keep it in for just a while longer, but I reminded her that she said I only needed it for six months and the time was up. I had it removed a week later. It did leave a bit of a dent where it was placed, but I just added that to the blue dot tattoos, and the scars from the biopsy and where the port was installed. They are my battle scars. I wear them proudly! I also suffered radiation damage to the upper lobes of both my lungs. Makes them feel quite heavy at times. But it’s something that I have to live with. I’ve told my family that I’m “Tonka tough”! I walked away from a cancer that should have killed me. I’ve been given another chance, and I plan to make the best of it. Things haven’t always been very easy. But lately, I feel like a they are turning around for me and I am grateful for that. I have a wonderful family and friends that I love dearly. I wouldn’t want to lose any of them.:) Did this give me a new zest for life? You bet it did! There isn’t anything that comes my way now, that I let stop me.
So…..If you’re faced with cancer, DON’T GIVE UP!!
Fight it with everything that you have. If you bow down to cancer, it will take you. You must be strong of mind and have a determination that you’ve never had before. I was defiant. I refused to give in. It beat me up pretty good, and I lost so much weight, and looking at myself in the mirror like that with no hair, was pretty scary. I did wonder if I was going to be able to pull this off. But I still didn’t give up.
So be strong. Believe in your ability to heal. Find a doctor that you totally trust and believe in. Allow yourself at least one really good cry just to get it out of your system. READ about your illness. Learn as much as you can to help
yourself. Find something funny everyday to make you laugh. Surround yourself with loving people. Take time for yourself. It’s okay to put yourself first sometimes!!! Cancer treatments can leave you feeling very tired, so rest. It’s
the best way to help yourself heal.
XOXO
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