Life With Cancer - Chapters 8-9

Chapter Eight - Recovery and Side Effects

         After two weeks of being completely immobile, though I still had feeling and sensations, and being prodded over those weeks to move fingers, toes, limbs and not being successful no matter how hard I tried. I actually remember looking at my fingers, toes, arms and legs and doing the same thing that I had done when it had all started. Demanding them with my mind to move, which didn’t work, obviously. I was frustrated, doctor’s were frustrated still unable to figure out what was happening or what to diagnosis this little “episode” as it came to be known as.

         Then one day, I moved my left thumb. I wasn’t trying to, I wasn’t even thinking about it because I had pretty much given up on ever being able to move again. I remember looking at my hand in shock as I moved my thumb at my own free will, and hope flared back. I can’t remember who was in the room with me at that time, I know Charles was and I think either mom or both mom and dad. Dad’s boss had told Dad to take the time off and not worry about a thing, that there would still be a job waiting for him once everything was stable and I was out of the woods. I remember there being excitement and a huge rush of doctors and nurses surprised at how suddenly there was movement. They started going through the now routine examinations only with more finess, with hope. But it was only my thumb that was moving, but as the day progressed I had regained full movement in my left hand and arm. I believe it was the next day I had movement in my left leg and foot, but I couldn’t move my toes because in those two weeks of not moving, I had lost a lot of muscle mass, and all the muscle in the top of my feet and toes. They tested my reflexes and found them above average which was a huge deal for reasons I can’t remember.

         Now with the mobility back by this time I had my right side back too, another unexpected surprise came upon us. I had a visit from a couple of school friend’s and their mom, the one had brought me a photo album of some pictures of my graduation and with some friends of mine. Charles was there, and I was smiling at one picture of my standing in front of the Christian academy were the ceremony had taken place, and one friend was hugging me from behind with a rose in his mouth. Now while I was trying to talk with my friends, I was getting frustrated with my lack of speech, that I had unknowingly brought my knees up, and my right hand and arm seemed to have a mind of their own, as it moved up, and stopped till my hand was bent awkwardly, my fingers were bunched up strangely, and my wrist was in my eye. I couldn’t take it down, so it just moved on up till it was above my head. Didn’t think much about it, then when I saw the picture, my back arched and my head pushed back in the pillow, my eyes rolled into the back of my head, everything went tense and I started making these horrible sounds that freaked everybody out. Including me. I had no idea what was happening, I couldn’t stop it, everything in my body tensing up and clenching up. Nurses came running in, Charles had thrown himself on top of me to stop the arching, but even he couldn’t get my back to touch the bed.

         I have no idea how long those spasms went on for, except I know they lasted for at least one week. I remember one night I was laying there, because I didn’t get much sleep at night, I remember dad holding my hand through the rails of the bed, and he would stroke my hand and tell me that he loved me. Dad said that the spasms scared the shit out of him because the noises I made reminded him of the Exorcist. As usual, seeing it was something new and unexpected a flurry of doctors, nurses, specialists, etc, came running into my room, and they monitored every spasm. They came to the conclusion that because I had been immobile for so long my muscles were spasming in protest.

         We also learned the warning signs of when a spasm was about to happen: my legs would go up, knees bent. They would just shoot up, and I had no control over it. Then my fingers on my right hand would bunch up so my fingertips touched each other, and then my right  arm would come up until my wrist was in my eye, then it would go up above my head and the spasm would hit like a locomotive. The spasms lasted anywhere from a few seconds to a few minutes. With me making my strange, creepy noises, eyes rolling back into my head, sweat breaking out over my skin, back a good few inches off the bed, head back in the pillow to the point that the pillow is crowding my face, my jaw is clenched so tight that afterwards my jaw and teeth would hurt, I can imagine I was quite the sight. I scared a lot of people, not to mention what I was feeling when they took place. We also figured out that spasms came on when I got really frustrated. Dad said the only way I calmed down was when somebody talked to me, and forced me to concentrate on other things like my breathing, and telling me to relax.

         When the spasms started to become more controllable, and we learned how to stop them, they stopped completely. When my knees went up, I remember mom going “Rose relax, put your legs down” and I would concentrate on relaxing and my breathing, but like most things, that didn’t work all the time. They did become fewer though and eventually stopped completely. We were all relieved when they came to an end, not something I want to go through again, even though I wasn’t in any pain when they came, but they were still scary.

         I remember my speech was still heavily impaired, still only able to make the odd sound and grunts, groans and noises that would have been funny if it hadn’t been for the situation. I remember the resident psychologist that paid visits to all the patients, Dr. Collins. I was so grateful for her, especially when I was having a bad day because she was so open and willing to listen (I know, it was her job to listen), but she also made me feel better about the stuff I was I was going through. I remember her checking in on me during my stroke a few times, and she showed up when she had gotten the news that I had gained mobility back in my left side. I had wanted to talk to her about what was happening, but still with that communication barrier, she got me pen and paper, I was eager for that opportunity. Now I’m right handed when it comes to writing, so writing with my left hand was impossible, the fact I was shakey from weakness, struggling to get what was in my brain to go to my hand, writing proved to be harder than I had thought it would be. It was like a game of charades with us, a huge guessing game, as she tried to decipher what I was trying to write. I remember I was trying to ask her “Why did this happen to me? What did  I do to deserve this?” Lucky for me she got the idea, and I remember her saying to me “We don’t know why this happened to you, it shouldn’t have happened, and they are still trying to figure it out. And, Rose you didn’t deserve this sweetie, but you’re strong, you’ll get past this and when you do you’ll blow us all away in awe.”

         When I regained all of my mobility back I remember thinking “hey I can move again, I can swallow again, I’m hungry and thirsty.” I asked when I was going to be able to eat and drink and the nurses had told me that they had to get a nutritionist up to test my swallowing before they allowed me to eat anything, still with that fear food and drink would end up in my lungs and not my stomach. Soon after I had a physiotherapist come into my room, and putting a belt type of deal around my waist, the physio assessed my ability to sit up from laying position, staying sitting with no support, and standing. I sucked at the pulling myself up into a sitting position, I sucked at sitting on the edge of the bed with no support, and I sucked at standing, the phsyio had to do most of the work, she deemed me unsafe to be moving around by myself or with help, I was still deemed bedridden, much to my disappointment. I was then assessed by a nutritionist right after the physio was done with me, she had me swallow while she felt my throat, she gave me a few sips of water to help her assess my swallowing, while I was craving liquid. It was hard not to just drink that whole cup of water. Then she gave me part of a digestive cookie to chew and swallow. Well, with a dry cookie and nothing to wash it down I coughed. She deemed me unfit to be allowed food, which pissed me off, because my speech was still impaired so I couldn’t explain that I wasn’t choking, that the cookie was too dry. “Don’t worry we’ll try again in a day or two.”

         Because of this, mom had extended the no food no drinks rule to the family and visitors, because now that I was fully aware of my surroundings, hungry and thirsty beyond belief, because even though I was having those nutrients in my IV fluid that was keeping my body from starving and keeping me dehydrated, didn’t stop the urge to eat or drink, and it was pure hell. I had agreed with her rule, because mom thought that bringing food and drink into the room and eating or drinking in front of me was not fair she wanted everything to stay out of the room. I remember another restless night, because the hunger pains were really bad and I couldn’t get comfortable for the life of me.

         The next day the physio came in the morning, and seemingly overnight I had improved. I sat up by myself, I sat with no support, though I still kept leaning to one side, but I was able to catch myself so the physio said it’ll improve, I stood up by myself though I was a little wobbly, I walked by myself with the physio hanging onto the belt around my waist just in case, she was so impressed with me she took me off bed rest, but I was to take it easy and not go walking by myself just in case. I was so happy with that news. I just had to wait for the nutritionist to show up which was going to be later that day. They were hoping the nutritionist would show up just before supper so that I would be able to have at least the last meal of the day. Well, as it happened I was also booked for an MRI that day too. What ruined my day? Right when the nutritionist showed up, so did the porter with the gurney to take me to my MRI. Mom had asked if the porter could wait seeing the nutritionist wouldn’t take long, maybe 10 minutes. But nope, the MRI was to happen now, and no waiting. So I asked the nutritionist if she would wait until I got back. “I’ll be back in an hour, you should be back by then.” Okay, so off I went for the MRI. As it was when we got back from MRI, the nutritionist never showed up, she had gone home. I was so upset, because I was so hungry and I had been looking forward to supper, considering that out of all the meals the hospital fed the patients the one meal I looked forward to was schelduled for that night. Mashed potatoes, mixed veggies, and bbq chicken breast.

         Mom asked the head nurse if I would be allowed to eat, because I felt confident that I could swallow well enough to eat. Jen was very iffy on allowing me to eat, but finally gave in after my begging her to let me try. In giving me permission, she told mom that the moment I coughed, I was stop and we were to wait for the nutritionist to come back in the morning. I was so hungry and happy that my mouth was watering when supper arrived. It all started off good, until I got some mashed potatoes, with nothing on them, and my speech still faltering so I was unable to tell mom the potatoes were dry, so when I coughed because they were dry mom stopped feeding me (she had to feed me because my hand eye corrdination was bad and I was struggling) and took the plate away. I was so upset and frustrated.

         As it was the next day, the nutritionist never showed, and I was watching the door all day, hoping that whoever walked through that door was the nutritionist. Mom was going around demanding where the nutritionist was, nobody had an answer just “she’ll show up when she has time.”

         Day five, still no nutritionist and I was getting impatient as hell. The pains were so bad and I was getting frustrated. I was angry when I missed breakfast, and when the nutritionist finally showed up just after breakfast dishes were collected, I was seething. I went through the exam with impatience just wanting it over with. She deemed me fit to eat, only my diet was to be mostly soups, and other foods with lots of sauce and gravies to help it go down easier.  I was so excited, after she left my anger was gone. I sent mom down to the cafeteria for pancakes and sausages. It was around 10am when mom put it down in front of me, and slowly I started eating. I was to eat slowly and sparingly because I had been without food for so long. It took me two hours to get through a pancake and a half and two sausages, when lunch arrived. Giving up on the pancakes and sausages I picked at lunch. Surprisingly I didn’t get sick, with everything I ate that day, cause I ate all day.

         A few days after Charles went home.

         Now as much as I would love to say that I got of scott free for side effects, that I just lost mobility, speech and whatever else but recovered it all back. Unfortunately, there were consequences.

1. My balance is  permanently affected. We found out two years later, after I demanded to see my MRI’s , that the stroke(s) I had damaged my brain stem, which is the cause of my bad balance.

2. My short term memory was affected slightly, where I forget things very easily, and nothing stays unless I’ve been told or did whatever it was at least four or five times, before it sticks. Because it’s slight, nobody can or will do anything about it. I was given tips about carrying a little notebook around with me and take notes. That didn’t work, because I did it for a couple of weeks, but it was pointless because I kept forgetting about the notebook. I also have a hard time with timelines. The part of my brain that categorizes events and stuff like that, is messed up, so while I think something happened a few days ago, it actually happened weeks or months ago. Even stuff I think happened months ago, was years ago.

3. My speech came back, but I was left with a stutter for years afterwards. Even to this day I stutter when I’m either angry, excited, frustrated, or anxious. I also get my words mixed up still, it’s funny with some of the stuff I come up with, I remind myself of Yoda. I also lose my train of thought very easily. Though, it’s all improving slightly, even to this day I still lose track of what I’m saying, even in the middle of a sentence.

4. There was a price I paid when I got my mobility back, I lost all feeling and sensation in my feet and legs. When it happened exactly, I’m not sure, all I know is I was showering and I couldn’t feel the hot water on my feet or legs. I could feel a little bit of pressure where the water was hitting me, but I couldn’t feel the temperature. I had no feeling in my feet at all, it went up to my ankles and my left leg it went all the way to my knee, on my right leg I had no feeling up to an inch under my knee. I also had no feeling on the outside of my thighs. I had to be careful because I could easily burn or get frostbite, because I couldn’t feel temperature. Explanation? Extensive nerve damage. I was prepared for years of recovery, I got full feeling back in 2007, I remember doctor’s  taking their little pointy pens, or halves of tongue depressors and poking me from my toes to my knees and say “Tell me when it gets too sharp,” they were always amazed that I would never answer them or kept saying not yet.

5. My hands also did this thing where my fingers would tense up and go into these strange positions, while I would get this excrutiating cramp in my palms, and I had no control over my hands until the pain went away and my fingers returned to normal. Thankfully, that only lasted a few years, as it was I couldn’t grip anything from a pan handle to a pen without my hands cramping.

6. I developed a “permanent” limp. Even though pillows were stuffed at the end of my bed to keep my feet at a ninety degree angle to keep my achilles tendons stretched, they still shrunk. My left worse than my right. It took a year to discover the limp, and it took my dad to make a comment on my walking. I remember walking down my parents hallway and dad said “You walk funny.” Of course, I never noticed until Mom pointed out that a) I was walking toe to heel instead of heel to toe, b) I was walking on my tip toes more than flat footed. Because the limp had already set in, Dr. Larratt said that I could start physio to stretch my achilles tendons because she didn’t want me to do the surgery, but I would always have the limp. I was able to stretch the right one back to normal, it took years and hip replacement surgery (more on that later) to get the left one back to normal, though I still have a hard time going down stairs because the left tendon is still not 100%.

7. After my stroke, I had no voice. For a year I couldn’t speak anything over a whisper, my vocal cords were so weakened. A while longer, I got my voice back but I couldn’t shout, because every time I shouted, I ended up whispering. To this day, I can now talk and shout, but I still can’t scream.

8. I also get this side effect that I call “the Shakes”. I vibrated literally, from head to toe. My hands were a huge give away that I was shaky because they were the worst. I was very unsteady to the point where I dropped everything. I couldn’t carry breakable objects, food, liquid (especially hot, cause I burned myself every time), children. The shaking always got worse when I tell people about my stroke – because everybody wanted to hear about it, I start shaking every time I got excited, upset, frustrated, etc. Now, while I called it the “shakes” the doctors called it “weakness”. The shakes stuck around for a very long time, and I can’t even tell you they went away, because even to this day I still get days where I’m really shaky, and other days only I only get shaky when I get emotional – frustration, anxiety, excited etc.

         Now most of these side effects have gone away over the past 9 years, some of them show themselves every once in a while, and some are still around. But I was damned lucky that I got away with what I did.  I’m lucky I came out of it at all. And it opened my eyes to people around me that are stuck in wheelchairs because they can’t walk, they can’t communicate because of speech impediments, or they can’t do simple things because of a disability.

         I learned that the thing’s people take for granted like walking, talking, doing simple tasks like cutting paper or writing, can be taken away in the blink of an eye. You can go from happy, go lucky to helpless, weak, unable to take care of yourself in a flash, and it’s a scary thing. People have no idea until they experience it. And I know a lot of people may read this and say “Yeah right, she’s just exaggerating, trying to scare us. What a drama queen.” All I to say to you is, believe what you want, I learned, maybe someday you’ll learn too just not the same way I did. I learned the hard way, I always seem to learn the hard way. But it worked.

         Now after all was said and done, I finally saw a hemotologist. Dr. Mant. I hated Dr. Mant, he was very Australlian and a very hard man. He gave me along with a few other patients that I went through treatments with, the impression that he didn’t give a shit. When he came in all he said was, “So I heard you had a little adventure. We don’t know what happened, we can’t explain it but you’re better now, we’ll start your chemo up in a week or so once we are sure that you are completely over this little episode.” Or something to that effect. Mom flew off the handle and screamed at him wanting answers, and when he left the room, he told one of the nurses that he wanted mom thrown out and banned from the hospital. The nurse said, “You want her out, you deal with her.” The nurse was in the frame of mind, Mom was a mother who just watched her daughter go through weeks of hell, and with no explanation as to why it happened, so naturally she would be pissed off and understandably so. She told mom, “I’m not asking you to leave, you have every right to be here.”

         When Dr. Larratt came in for her rotation, she came to my room with the intern that had been looking over me when I had my “episode”. But before she did, I could hear them outside my room, she had pulled the door closed, but I still heard their conversation quite clearly and it went something along the lines of:

Dr. Larratt: “Do we know what caused the stroke?”

Intern: “No, we haven’t been able to find anything.”

Dr. Larratt: “And why don’t we know?”

Intern (in a very quiet voice): “We’ve been looking but we can’t find anything.”

Dr. Larratt: “That is not acceptable! What am I supposed to tell them? How are we supposed to prevent this from happening again?” By this time she is yelling at him, and I’m sure I wasn’t the only one that heard her by this time. “We DON’T want this to happen again, and I don’t want to walk into the room and say oops! My reputation is on the line, your reputation is on the line, and they can sue for this! Especially, if it happens again! And she might not be lucky the second time around! We’re damned lucky she got though it! So find out what happened, and how to prevent it!”

         Then they came into my room. The intern was beat red, and he wouldn’t meet anybody’s eyes and I felt sorry for him, because it wasn’t his fault that I had the stroke. Dr. Larratt had my binder in her hands and she was flipping through it, and then looked at me.

         “Well, I see you have decided to make us do our jobs.” She winks at me, I loved her for this, no matter the situation she was always making light of it and still she stayed serious. I think she did that so that the patients would stay relaxed and keep a glimmer of hope, even if their lives were coming to an end. “I’m sorry Rose, Mrs. Kievit” Mom was in the room with me. “I don’t know what to tell you. We can’t find anything that would cause what you went through, but tell me what happened. Describe to me everything that happened.” So I told her from beginning to finish what happened, I was shaking like crazy. She was nodding and watching me very closely as I stuttered my way through and almost vibrated right off the bed. And she shook her head.

         “I’m sorry this happened, I wish I had been here. The only conclusion we can come to is that you had a neurological stroke due to an overdose of chemotherapy. We are stopping all of your lumber punctures because we also think that is what set the stroke off. We have gone through medical files of other patients all over the world and in the past, and we have only been able to find one case similar to what you have gone through, a young girl in China went through the same thing, but that was the conclusion the doctor there had come up with, and this happened about ten years ago. We are still going to see if we can find anything else but right now that’s all we have. This is a really rare condition that is one of those one in a million situations and you just so happened to be that one. I don’t care what anybody else says that stroke scared you and you are traumatized.”

         I’m really surprised I remember that, but it’s funny how memory works. With that she answered our questions the best she could, as honestly as she could. I asked her if anything was found on my MRI’s the second time around and she said that two small abnormalities have shown up on my MRI, but they weren’t tumors, they were nothing to worry about, they weren’t life threatening. Which really had me wondering, but that was all that was ever said about my MRI’s.

         So one of the scariest phases and the second most traumatic times of my battle came and went, because they had stopped all treatments during my stroke afraid of what would happen, this put me back a month or so, and extended my protocol. I started chemo up again a couple weeks later, with some major changes made to the protocol. Not only were the lumber punctures stopped but so was the “round the clock” chemo. I was now “sentenced” as I like to put it to three days a week in Outpatient for chemo and bloodwork. I was admitted one more time in the hospital for a couple weeks for some treatments. But the rest was in outpatient after that.

Chapter 9 - The Changes I Went Through

         So when a person goes through cancer, the chemo and/or radiation treatments they are given to help fight the disease, things start to change about them. Some people get through it completely unscathed and go on to a normal life, others have life altering changes like losing limbs, sense (sight and hearing), etc. Some go through very slight changes that don’t stick around. These are some of the changes and experiences that I went through personally due to chemo and radiation:

1. Taste: Now in the list of things I might experience, Dr Larratt had told me that some people experience a change in taste buds. Where tastes may alter, but it was insignificant and hardly noticeable. HA! Many foods I loved to eat the taste changed and I couldn’t stand them for a long time, two of the main ones:

- Roast Beef tasted like fish to me. Seriously!! I couldn’t eat it for a long time because the change threw me off. A few years after chemo I was able to eat roast beef again, but the gravy still tasted like fish to me. To this day I still can’t eat gravy.

- Spinach Dip got this really bad taste for me, and it is one of my favorite foods. The first time I had spinach dip on chemo I thought mom had bought a bad batch for their anniversary. For a long time I couldn’t stomach it, but because I have a weakness for spinach dip, I just don’t think about the terrible taste and eat it anyway. To this day, it still has that bad taste and it has been 9 years since chemo.

2. Weight & Appetite: Once again when Dr. Larratt was going through that list of side effects I might experience on that day she confirmed my diagnosis, she told me that a lot of chemo patients experience Anorexia, because the chemo effects the appetite so dramatically. I remember scoffing at her and going “that’s not going to happen to me.” My appetite was still good at that time, boy was I in for a surprise!

         In the beginning, my appetite was great! I thought I had proven her wrong. Then as the chemo progressed and she put me on the steroid – Prednesone to help me keep that appetite, my eating habits started changing. There were days I forgot to eat, there were days I didn’t feel like eating and there were days that just the thought of eating made me throw up. Anorexia hit and I wasn’t even aware of it.  For me the Prednesone was a huge culprit for my problem because the high dosage of 65 mg – which meant 11 pills because they only came in 5 mg and 10 mg pills, also with my huge  issue of gagging on pills every time I had to take them. On top of that, prednesone pills if you don’t swallow them fast enough, they melt in your mouth and they have the nastiest taste ever!! All this thrown together, I lost my appetite faster. Now I was told I had to take these pills with meals – eat half a meal, take the pills and finish the meal. So I would get through half the meal, take the pills and then I would end up pushing the rest of the meal away because with the bad taste in my mouth had my stomach churning, and just looking at what was left just made me sick.  As time went on, I started throwing up my food cause it was hard to keep food down once I took those pills. I was a huge waste of food, and I knew I embarrassed dad when we went to restaurants and I would leave half meals, cause the waitress would comment on my not eating and he would explain why. I felt bad for it.

         When I noticed the huge weight lose? In outpatient one day when they were weighing me so they could make sure they were still ordering the correct dosage of chemo for my weight. I weighed a whole 89 pounds, three months after I was diagnosed. I remember the head nurse, Linda shaking her head and reading my weight to me in kilograms. I was looking at her and asking her “what is that in pounds? Is that bad?” Her answer after she looked at the conversion chart attached to the scale “Yeah that means you’re between 85-90 pounds, how’s your appetite been?”, I think I looked at her stunned before I explained what was going on. It definitely explained why I felt light headed. After that I started fighting with Dr. Larratt to take me off the Prednesone. She refused because Prednesone was a huge factor in my protocol, and so I took myself off of the drug, and lied to her about taking them. (Don’t do that!!! You get in lots of trouble! Trust me!) Now why was this such a huge shock to me? Before I was diagnosed with Leukemia I weighed 145 pounds. I wasn’t overweight, I was muscular and slender. Three months later and I’m suddenly 89 pounds or less? That meant I lost 56-60 pounds in three months!

         I strongly believe that I may have weighed less than 89 pounds at one point, because I remember when I was dress shopping for a friends graduation because I had offered to be his date so he didn’t have to take his sister as his date instead. I remember trying on a size 5 dress, and it hung off of me. I was so sickened and shocked by it, and I got really scared. But as it was the size 5 was too short so I went with size 7, so that it actually reached past my ankles, though I was lost in the thing. I also hoped that by the time his graduation rolled around, I would have gained a little bit of weight back.

         There is a photo that was taken in my grandparents camper where all of us cousin’s were sitting and visiting. I was on one of the bed’s with one of my cousin’s who was holding my niece who was about 6 months at that time. My cousin was holding my niece up in the air and we were both making faces because she had filled her diaper and somebody took a picture. I never realized until I saw that photo how much my losing so much weight had changed my physical appearance. You could see the the shape of my skull through my skin. I was literally a skeleton covered in skin.

3. Cravings: Once I got myself off the Prednesone, and got myself more into a somewhat better eating habits, though there weren’t entirely that healthy. I was at least eating again, I got some wicked cravings. I was told once that I was worse than a pregnant woman. There were months on end where I couldn’t stomach anything except one thing. A few of the cravings that I went through:

-3 months, I lived on Hot Dogs alone.

- 4 months, A&W Mama Burgers with cheese

-6 months or longer, McDonald’s cheese burgers and fries.

-2 months, Kraft Dinner

Let me tell you when the cravings were over with, I never touched those items for at least 3 years after. I remember for a few years I couldn’t stomach a hamburger. Hot dogs took longer. To this day I can only eat Kraft dinner once a month or so.

4. Sensitivities: A lot of body parts became very sensitive. My scalp for one, due to the 10 rounds of radiation I went through. It was a prevention procedure to catch any cancer cells that may have been in my brain, and to stop any from getting there. As it was my brain was clear before I went into radiation and it has remained that way. Wearing hats, bandanas, and even the wig I bought that was made specifically for radiation patients, I couldn’t stand anything on my head because it was so itchy and irritated due to the radiation. Even though the radiation was painless, the sensitive scalp that developed after a few rounds was a pain to deal with.

         My eyes were very sensitive to the light due to the Cipro (antibiotic) I was on for a couple of years. I always had to have sunglasses on, and I lived in the dark because my eyes hurt all the time. I ended up getting perscription glasses for a while that were tinted so that I could have something indoors to protect my eyes.

5. Numbness: Before my stroke even happened, my fingers went numb. Apparently, this is a common side effect to chemo. They first went tingly, then just numb. It was really weird and annoying, as to how I started dropping stuff because I couldn’t feel if I had a grip on things or not. I remember getting very frustrated over this.

6. “Chemo burn”: Now, I’m going to sugar coat this one, because it is rather embarrassing, but I want to write the truth and hide nothing so here it goes: Chemo burn is a side effect that is a very painful rash that appears in the most inappropriate places which makes going to the bathroom very painful to do. Let me just say that even with the Tylenol 3 with codiene I was given along with the cream to help get rid of it and calm it down didn’t keep me from screaming. It also made me afraid of the bathroom. I got it twice and I hated every single time it showed up.

7. Yeast infections and mouth sores: Chemo also caused a lot of mouth sores and yeast infections in my digestive tract. I was given four or five mouth washes to “prevent” these mouth sores and yeast infections, but I still got them. I was also given the mouth washes to keep my mouth and teeth clean because I wasn’t allowed to brush my teeth as it was if my gums bled, it was very hard to get the bleeding stopped. I remember the mouth sores that I got on the back of my tongue got so bad that my tongue swelled to the point I couldn’t talk, and I was stuck to liquid through a straw to keep the food from touching the sores. As it was (again against doctor’s orders), I stopped the mouth washes and the sores and yeast infections went away. Remember I’m the one that makes doctor’s scratch their heads, so of course the mouth washes would be the cause of my yeast infections and mouth sores. Again I lied to the doctor about taking them because she was so adamant on them and she wouldn’t listen to me.

8. Energy: As the chemo progressed my energy level got worse. It had gotten so bad that for me to go in public, I had to go around in a wheelchair because I tired out so fast. I learned fast not to refuse the wheelchair, and I will admit I was embarrassed to have to go around in a wheelchair. I was in the frame of mind that I was a normal, 18 year old girl, quite capable of walking, I should not have had to use a wheelchair to get around.

         There are other changes I went through, that aren’t coming to me at the moment. So as they come to me I’ll add them. But that’s just a taste of what I went through. Like I said, others experience these things, others experience different things, or nothing at all, or at least not to the extremity as others.