33 replies to this topic

[JustLearning]

So far I think I’ve had a pretty lucky life. Things just didn’t seem to go that wrong for me. The summer of 2010 was no exception. I had my great friends, I had an awesome family at home, I had done well in school and was almost done my nursing program at Ottawa U, and I was even hanging out with a really awesome guy. I had my little day to day issues or problems, but generally was a very optimistic, positive, and happy person.

Everything changed for me in August of last summer. I was working as a Personal Support Worker for elderly patients and was very happy with my job. I started getting back pains at work so I had to stop for a week and go to the doctor. He told me he thought I pulled a muscle lifting a patient, so to take some pain killers and muscle relaxants and some time off of work. I did, and the pain subsided. The next week I returned to work and the pain came back with a vengeance. I thought I could push through it and keep working on the pain killers. I was wrong. The ache turned into agony, and once again I returned to the doctor. He persisted in telling me it was muscle soreness, but this time offered an X-ray. I got this done, but failed to receive any explanation for my pain. The doctor then suggested physio. I had one session at a downtown office, but while walking home afterwards the pain started to radiate down my legs. I was afraid, but trusted that everything would soon go back to normal. I continued on with my regular life.

My friends and I had rented a cottage for the end of the summer. We wanted one last time to be together before everyone went back to school, and that’s what I got. One last time to enjoy walking, drinking, swimming, canoeing etc. By the end of our little vacation I ended up having to get my parents to come get me. I couldn’t stand the pain. I wasn’t sleeping or eating. My parents took me to the Kemptville hospital at around 3am. The doctor there was very thorough. She asked about my symptoms, and did a complete examination of my back and body. She didn’t give up until she had the answer, and I’m very thankful for that. She ran me through some scans and tests but eventually said she needed better imaging so she sent me to the Civic hospital in hopes of getting an emergency CT.

I didn’t have to wait long before they took me in (they could see I was in pain). They gave me a cocktail of Gravol and Dilaudid right away. Gravol to stop the nausea brought on by the Dilaudid, which is a drug that is more potent than Morphine. I waited patiently with my mom for the CT. After being sent through the claustrophobic machine the doctor took my mom and I into a small room for the results. I will always remember what happened next. He barely shut the door before blurting “Well, I don’t have good news for you…It looks like you have a series of tumours in your spine from T8 to T10. We think it’s Lymphoma.” My mom and I didn’t speak for a minute, then exchanged glances and began sobbing. I remember thinking that he had to be wrong. I was fine. I had never had anything worse than a cold or flu. I couldn’t have cancer.

That night I slept in the triage, separated from the other patients by only a curtain. I had sent my parents home, telling them to return in the morning. I was to have surgery the next day on my spine. I didn’t even really have time to ask questions, it was all happening so fast. The nurse told me to stay in my bed. I requested that someone help me walk to the washroom a few hours later. The nurses were too busy to take me, so I decided to just go myself. It wasn’t that far from my bed, and I used my bedside table as a walker. Walking was getting harder by the second. My legs were sort of dragging and I was losing feeling fast. Once in the washroom I fell to the floor, knocking out my IV and bleeding everywhere. I was so scared. Not of the blood, but of the loss of control. I’ve never been more afraid. I called for help, and two nurses half carried me back to my bed. I explained what happened and they promptly catheterized me to avoid any other washroom trips. I lay awake most of that night petrified. I was losing more and more feeling as the hours went on. I would pinch down the length of my legs with my hands, noticing less and less sensation as I went. By morning I couldn’t move my legs at all. I had the surgery, while my family waited. I woke up early the next morning with rods in my spine and the following several days were filled with moderate pain and the resulting painkiller haze.

The doctors were both right and wrong. I did have cancer, but it wasn’t lymphoma. The biopsy showed that I had a Rhabdomyo sarcoma. This was very unusual. Usually this is a children’s cancer that occurs in their abdomen. It is very aggressive, and the doctors looked grim when they delivered the news. Throughout everything I kept positive. I just kept thinking I would recover from the cancer and be back to walking in no time. I recovered from the surgery well and I was gaining back some feeling and movement in my legs! I was overjoyed. I rushed into taking an hour long wheelchair ride with my friends who came to visit. I knew I shouldn’t push it, but I did, and I payed for it. The next morning I was in critical pain and couldn’t even move my toes. It took many doctors and a series of major meds to get me back to a point where I wasn’t screaming in agony and begging to be put out. Days went by, and my movement and sensation didn’t improve.

Over the next few weeks I had many friends and family visit. I really enjoyed having them with me and I was still in the same mindset; Things were going to get better. I felt so loved with all of the awesome cards, notes, flowers, and teddies. Thank you to everyone for their kind actions and words of encouragement. I had a couple of hard goodbyes before school started up again, one being with the guy I had been hanging out with, but I thought I would be back in the swing of things soon. Soon I would see them all again, and be back to partying and school and everything else, right?

I did continue what I could of my schooling throughout my whole ordeal. I couldn’t participate in my clinical classes however, because I couldn’t walk, but I had made a deal with the university to do them when I was able. I was still going to be a nurse.

I was moved to the General at the beginning of September and was to begin radiation the moment I got in the door. On the way to the hospital I met some EMTs that were my age and made a great friend that I kept for the months to follow. I was still having major back pain, so the radiation session when I arrived was a bit of a nightmare. I got my first tattoo that day, to my dad’s horror! But they were only a few black dots. They had to make ink markers on my chest to radiate in the correct location for the next few weeks. I continued getting radiation for the rest of September while my doctors planned for some of my procedures. Radiation didn’t bug me one bit. I still had my hair, I had no side effects and I even began to get movement back in my legs. Things were looking up.

During my radiation period I was also getting hormone treatments at the Ottawa Fertility Center so that I could have eggs frozen. I was getting this done because the chemo I was going to receive would wipe out my chances of having kids, and that was something I knew I wanted in the future. It was a very hard process to endure. I was SO hormonal! I had to give myself 4 needles a day, and I became very moody and extremely emotional. The doctors had not even given me very much to hope for. They told me that with the procedure I would have about a 1% chance of pregnancy for every follicle they could recover. You have a greater chance of becoming pregnant in the future if you combine your eggs with sperm before they are frozen, but when the doctor asked “Are you seeing anyone who would be willing to have children with you?” I scoffed. Sure, I had been hanging out with a guy, but I didn’t think that would fly with him. I didn’t bother asking. I ended up freezing the eggs alone. By the end of the treatments the doctors there told me that I was very lucky. I had managed to grow 11 follicles in my ovaries that could be preserved as potential pregnancies in the future. I am currently the record holder!

I was very excited and overjoyed to be moving to the Ottawa Hospital Rehabilitation Center in October. I had told my doctor that I wanted time to work on my legs and gain back as much as I could movement and strength wise before starting chemo. I told him that walking was more important to me than getting better, and I meant it. That’s where I went wrong. I was so set on getting my old life and my old relationships back that I didn’t care about the cost. No doctor had said I would never walk again, so I just convinced myself I would. For the entire month there I had daily physio and occupational therapy and I was getting stronger. I could move my legs now and transfer to my wheelchair on my own. Regardless of my gains, I became depressed. I cried daily, refused visitors, made my family cry with me… I was looking at things all wrong. All I wanted was to walk again, and seeing everyone around me at the center not able to do so, or maybe able to do even less, just made me upset. I looked at them as something I didn’t want to become.

Eventually I became too ill to stay at the Center. My cancer had spread to my left breast, and many other smaller tumours were scattered throughout my body. I had to start chemo. I was taken back to the General to begin treatment in November.

I was warned by my doctor about the side effects of chemo, but nothing can really prepare you for the toll it takes on your body and mind. I decided to donate my 20 inches of long brown hair to the Pantene program that provides wigs to other cancer patients. I knew I was going to lose it anyway, so I wanted it to mean something. I could live with the short hairstyle I was left with. I didn’t like it, but hey, I still had hair. What was harder to deal with was when I started to find my pillow covered in clumps of my short hairs. I decided to shave my head. It was a tough decision, but what made it a whole lot easier was a friend of mine’s mom. She was raising money and shaving her head for me as well. Thank you Jackie Carnegie. Regardless of having support through all of this, I became even more depressed. I didn’t feel like my old self anymore. I didn’t feel attractive, I couldn’t walk, I couldn’t be a nurse (if I couldn’t walk), and who knows if the chemo would even be a success.

I’ve been getting chemo now for 9 months, and it’s definitely been the hardest time of my life. I’ve been nauseous non stop, and there are some days that I can’t even get out of bed. I had a couple of doctors that made my life miserable, I had a malfunctioning CADD pump for my painkiller that kept overdosing me, and I even went through withdrawal. I lost touch over the months with a few friends, and decided not to keep up communication with the guy I had been seeing. I thought “Who would want to be with someone like me now?” He was a great person and I thought he should be with someone more like my old self, not a paraplegic who had cancer. I would cry daily with my parents, mourning my old life. I could see everything I had and everything I wanted slipping away from me. Some friends and extended family continued to visit, but even their visits just made me more upset. They asked general questions that I came to resent, such as “Are you walking yet?” and said things like “Things will get better!” which I felt to be untrue. They would talk about outings, parties and things that I desperately wanted to be a part of, but no longer could.

The chemo, however, was helping the cancer situation. I had no mets remaining, and things were looking better after the first few months of chemo. Crisis occurred again right after my birthday. I not only had a massive cancerous tumour in my foot, but a homecare nurse hadn’t watched where she was sitting on my bed, and crushed 4 bones, leaving it broken as well. When I was told I had cancer again, I was so disheartened. What made things worse was the manner in which I was told. The doctor didn’t wait until I had someone with me; he told me while I was alone in an examination room and then proceeded to look shocked when I started to sob. One doctor even mentioned that I might have to get half of my foot amputated, but that we would see what radiation could do for me first. All I could think was “Great…another reason to be miserable.”

I started getting radiation again a few weeks ago on my foot. I’m happy to report that it is now healed, back to normal size, and I am able to wear shoes again! I’m even happier to inform you all that I have had a major transformation in attitude. For so long I had laid in bed feeling sorry for myself because of all of the things I had lost, and for how sick I felt, but I came across a website the other night while researching paraplegia that changed my view. The quote at the top of the website said “It’s not what’s taken away from you that counts; It’s what you do with what you have left.” Once again I cried. Not because I felt bad for myself anymore, but because I felt so badly for the way I had behaved, and for the thoughts that I had. I posted this quote on my facebook, and a few hours later a friend commented. He said “And you will always have more left to work with than most will have ever had.” That really hit home. I was so lucky to have, and have had, the things that I currently do, or did in the past. I had had 21 perfect years. I had walked for that long and lived for that long. Some people don’t get to walk a day in their lives, and will never get that chance. So what if I couldn’t date the same kind of people that I used to, or do the things I used to. Some people never get to feel attractive, never have such a caring family, never get to go to university. I continued to read stories about other paraplegics and quadriplegics with the tears streaming down my face. I read about their accidents, their hobbies, their experiences and all I could think was “How could I have been so stupid?”

I wanted to write this note not only to help people understand my situation, but to help people learn the lesson that it’s taken me 12 months to learn. Be thankful for what you have, and don’t stress the things you don’t. So what if I don’t walk again? So what if I don’t have hair? I can still move my arms and legs, I still have my mind, I still have the same loving family, and my true friends have stuck by me though everything. Learn to value the truly important things in life.

While I’m still bald I’ve been thinking about getting my second tattoo. I’m going to tattoo that quote I found that resonated so deeply with me and it’s going to go right on my head. That way while I’m going through the rest of all this, or even if I have to go through it all again in the future, that quote will be with me. It will be in my head.

[Tatiana]

Wow, that is one hell of an experience for a young lady to go through.

Its amazing and encouraging that towards the end of your 'story' I could feel the strength that you have had to develop.

Sci forces us to learn...its the only way to cope. Im a great believer in thinking we are only given what we can cope with though we can be tested to the hilt sometimes.

I absolutely love life and its clear that you do...paraplegic or otherwise and as challenging as it may be.
Your mindset is your saving grace.....and will help you fight whatever comes your way.

All the best
jeannette x

[Snakeye]

Sounds like youve had more than your fair share of misery..Glad you have copped a positive attitude tho...Becoming content with your portion in life after suffering a major setback is very challanging and many folks just can't get their head out of the shadows of negativity after suffering such a body-blow...Keep on keeping on...Peace

[isobar]

Hi,


Thanx for sharing your story i really enjoyed reading it . You've had a lot to deal with that's for sure. I love the way you came through it all and in someway you seem to have grown in spite of your circumstance ....... beautiful. I wish you well and welcome aboard .

Edited by isobar, 08 July 2011 - 07:15 PM.

[Smileyblue]

Welcome to the site! ;-)

You have a very touching story and great skill at keeping your readers attention!

Its not always easy keeping that positive outlook, but hang on to it as much as you can.. Even if things become grey again (as so easily can happen), you know that there is somewhere to come to, to find your way back to the positivity..

[sh1wn]

Welcome to the site, sorry why your here, but glad your here. Thanks for sharing your story, Glad it only took you 12 months to pick your self up, shake the dust off and get on with living, lots of people don't.

[Ginny]

Wow, you've been through a lot! I'm glad you have managed to regain your positive outlook after all that's happened to you.

Recovering from SCI is a journey and your journey was interrupted by something more important that you had to deal with. Continue to do that and when you have the cancer under control, get back to reshaping your life. With your positive attitude, your intelligence, your determination, I don't see why the following won't happen for you:

Dating whomever you like....able bodied or disabled....your choice.

Having a career in a caring field. Maybe not the field you originally envisioned, but something that makes use of your personal experience and has value to others.

Remaining in a tight circle of loving people. It seems as if you already have that. Hold on to it!

Canoeing, traveling, having fun with friends. Why not?

Being a mom one day. You've had the foresight to take steps that it could be possible.

Walking? You really haven't had a chance to explore this because of interruptions by chemo, radiation, surgeries. When you have a chance, get back in rehab and give it another try. You never know. It took me a half-year of hard work to get back on my feet and I'm still working to improve.

I wish you the best and hope that you post again so we know how you're doing.

Edited by Ginny, 08 July 2011 - 10:05 PM.

[JustLearning]

Thank you to everyone for their kind words of welcome and encouragement! I really appreciate all of it, including any of the numerous other things I have learned from other topics on this site. It makes me feel like there are so many different people and situations, and that I am in no way alone.

jeannette
I completely agree about your statement regarding mindset. It made a world of difference. Even though I still have my bad days, I always turn to that quote and to the positive messages on this site to keep me going.

Snakeye
It was very hard to get my head away from the negativity, but once I did it was like turning on a light. Everything seems brighter.

isobar
I feel like I have grown, and am continuing to grow and learn with the help of my friends and family (who are happy to be growing in awareness and understanding as well).

smileyblue
I feel like this place is exactly as you said, “somewhere to come to, to find your way back to the positivity”.

Ginny
Thank you for opening my eyes to some possibilities. I have been looking into some of the things you mentioned, and it seems like it’s doable. I CAN do certain nursing jobs even if walking isn’t in the cards, I CAN date anyone (so long as they are an understanding and open minded individual), I CAN be a mom (what about adoption, if I can’t get pregnant?), and I CAN still be like my old self again.

Just to let everyone know, I am currently living at my family home and taking periodic trips to the hospital to complete my chemotherapy. I am also attending physiotherapy at the Rehab Center twice a week and I’m going to push myself as hard as I can to gain as much as I can (but not to the point where I’m endangering my health).

Edited by JustLearning, 08 July 2011 - 11:48 PM.

[Ratticis]

JustLearning, on 08 July 2011 - 07:18 AM, said:

“How could I have been so stupid?”

It's called being human. Glad you were able to see the light again, and good luck with the future.

[ZEN12many]

Hi JustLearning

I do sympathize with you. My wife and I are going through something not quite so scary but scary enough. In the last seven months my wife has had two operations for cancer. The two incidents of cancer were independent - so that is good. And they got both early so that also was good. But one of the cancers is an aggressive type with a 50-50 chance of returning. So, now my wife is on chemo. She has had two sessions and is due to have four more every three weeks. She also has said that she has never felt so sick. And when she does finally recover somewhat, it is time to have another session and start over. She lost her hair about three weeks ago and was depressed about that. We bought her a wig but I don't think she likes it - it isn't the same as your own hair. We are hoping for the best but it is hard when the threat of the big "C" continues to hang over our heads.

[skeetie]

JustLearning, on 08 July 2011 - 07:18 AM, said:

So far I think I’ve had a pretty lucky life. Things just didn’t seem to go that wrong for me. The summer of 2010 was no exception. I had my great friends, I had an awesome family at home, I had done well in school and was almost done my nursing program at Ottawa U, and I was even hanging out with a really awesome guy. I had my little day to day issues or problems, but generally was a very optimistic, positive, and happy person.

Everything changed for me in August of last summer. I was working as a Personal Support Worker for elderly patients and was very happy with my job. I started getting back pains at work so I had to stop for a week and go to the doctor. He told me he thought I pulled a muscle lifting a patient, so to take some pain killers and muscle relaxants and some time off of work. I did, and the pain subsided. The next week I returned to work and the pain came back with a vengeance. I thought I could push through it and keep working on the pain killers. I was wrong. The ache turned into agony, and once again I returned to the doctor. He persisted in telling me it was muscle soreness, but this time offered an X-ray. I got this done, but failed to receive any explanation for my pain. The doctor then suggested physio. I had one session at a downtown office, but while walking home afterwards the pain started to radiate down my legs. I was afraid, but trusted that everything would soon go back to normal. I continued on with my regular life.

My friends and I had rented a cottage for the end of the summer. We wanted one last time to be together before everyone went back to school, and that’s what I got. One last time to enjoy walking, drinking, swimming, canoeing etc. By the end of our little vacation I ended up having to get my parents to come get me. I couldn’t stand the pain. I wasn’t sleeping or eating. My parents took me to the Kemptville hospital at around 3am. The doctor there was very thorough. She asked about my symptoms, and did a complete examination of my back and body. She didn’t give up until she had the answer, and I’m very thankful for that. She ran me through some scans and tests but eventually said she needed better imaging so she sent me to the Civic hospital in hopes of getting an emergency CT.

I didn’t have to wait long before they took me in (they could see I was in pain). They gave me a cocktail of Gravol and Dilaudid right away. Gravol to stop the nausea brought on by the Dilaudid, which is a drug that is more potent than Morphine. I waited patiently with my mom for the CT. After being sent through the claustrophobic machine the doctor took my mom and I into a small room for the results. I will always remember what happened next. He barely shut the door before blurting “Well, I don’t have good news for you…It looks like you have a series of tumours in your spine from T8 to T10. We think it’s Lymphoma.” My mom and I didn’t speak for a minute, then exchanged glances and began sobbing. I remember thinking that he had to be wrong. I was fine. I had never had anything worse than a cold or flu. I couldn’t have cancer.

That night I slept in the triage, separated from the other patients by only a curtain. I had sent my parents home, telling them to return in the morning. I was to have surgery the next day on my spine. I didn’t even really have time to ask questions, it was all happening so fast. The nurse told me to stay in my bed. I requested that someone help me walk to the washroom a few hours later. The nurses were too busy to take me, so I decided to just go myself. It wasn’t that far from my bed, and I used my bedside table as a walker. Walking was getting harder by the second. My legs were sort of dragging and I was losing feeling fast. Once in the washroom I fell to the floor, knocking out my IV and bleeding everywhere. I was so scared. Not of the blood, but of the loss of control. I’ve never been more afraid. I called for help, and two nurses half carried me back to my bed. I explained what happened and they promptly catheterized me to avoid any other washroom trips. I lay awake most of that night petrified. I was losing more and more feeling as the hours went on. I would pinch down the length of my legs with my hands, noticing less and less sensation as I went. By morning I couldn’t move my legs at all. I had the surgery, while my family waited. I woke up early the next morning with rods in my spine and the following several days were filled with moderate pain and the resulting painkiller haze.

The doctors were both right and wrong. I did have cancer, but it wasn’t lymphoma. The biopsy showed that I had a Rhabdomyo sarcoma. This was very unusual. Usually this is a children’s cancer that occurs in their abdomen. It is very aggressive, and the doctors looked grim when they delivered the news. Throughout everything I kept positive. I just kept thinking I would recover from the cancer and be back to walking in no time. I recovered from the surgery well and I was gaining back some feeling and movement in my legs! I was overjoyed. I rushed into taking an hour long wheelchair ride with my friends who came to visit. I knew I shouldn’t push it, but I did, and I payed for it. The next morning I was in critical pain and couldn’t even move my toes. It took many doctors and a series of major meds to get me back to a point where I wasn’t screaming in agony and begging to be put out. Days went by, and my movement and sensation didn’t improve.

Over the next few weeks I had many friends and family visit. I really enjoyed having them with me and I was still in the same mindset; Things were going to get better. I felt so loved with all of the awesome cards, notes, flowers, and teddies. Thank you to everyone for their kind actions and words of encouragement. I had a couple of hard goodbyes before school started up again, one being with the guy I had been hanging out with, but I thought I would be back in the swing of things soon. Soon I would see them all again, and be back to partying and school and everything else, right?

I did continue what I could of my schooling throughout my whole ordeal. I couldn’t participate in my clinical classes however, because I couldn’t walk, but I had made a deal with the university to do them when I was able. I was still going to be a nurse.

I was moved to the General at the beginning of September and was to begin radiation the moment I got in the door. On the way to the hospital I met some EMTs that were my age and made a great friend that I kept for the months to follow. I was still having major back pain, so the radiation session when I arrived was a bit of a nightmare. I got my first tattoo that day, to my dad’s horror! But they were only a few black dots. They had to make ink markers on my chest to radiate in the correct location for the next few weeks. I continued getting radiation for the rest of September while my doctors planned for some of my procedures. Radiation didn’t bug me one bit. I still had my hair, I had no side effects and I even began to get movement back in my legs. Things were looking up.

During my radiation period I was also getting hormone treatments at the Ottawa Fertility Center so that I could have eggs frozen. I was getting this done because the chemo I was going to receive would wipe out my chances of having kids, and that was something I knew I wanted in the future. It was a very hard process to endure. I was SO hormonal! I had to give myself 4 needles a day, and I became very moody and extremely emotional. The doctors had not even given me very much to hope for. They told me that with the procedure I would have about a 1% chance of pregnancy for every follicle they could recover. You have a greater chance of becoming pregnant in the future if you combine your eggs with sperm before they are frozen, but when the doctor asked “Are you seeing anyone who would be willing to have children with you?” I scoffed. Sure, I had been hanging out with a guy, but I didn’t think that would fly with him. I didn’t bother asking. I ended up freezing the eggs alone. By the end of the treatments the doctors there told me that I was very lucky. I had managed to grow 11 follicles in my ovaries that could be preserved as potential pregnancies in the future. I am currently the record holder!

I was very excited and overjoyed to be moving to the Ottawa Hospital Rehabilitation Center in October. I had told my doctor that I wanted time to work on my legs and gain back as much as I could movement and strength wise before starting chemo. I told him that walking was more important to me than getting better, and I meant it. That’s where I went wrong. I was so set on getting my old life and my old relationships back that I didn’t care about the cost. No doctor had said I would never walk again, so I just convinced myself I would. For the entire month there I had daily physio and occupational therapy and I was getting stronger. I could move my legs now and transfer to my wheelchair on my own. Regardless of my gains, I became depressed. I cried daily, refused visitors, made my family cry with me… I was looking at things all wrong. All I wanted was to walk again, and seeing everyone around me at the center not able to do so, or maybe able to do even less, just made me upset. I looked at them as something I didn’t want to become.

Eventually I became too ill to stay at the Center. My cancer had spread to my left breast, and many other smaller tumours were scattered throughout my body. I had to start chemo. I was taken back to the General to begin treatment in November.

I was warned by my doctor about the side effects of chemo, but nothing can really prepare you for the toll it takes on your body and mind. I decided to donate my 20 inches of long brown hair to the Pantene program that provides wigs to other cancer patients. I knew I was going to lose it anyway, so I wanted it to mean something. I could live with the short hairstyle I was left with. I didn’t like it, but hey, I still had hair. What was harder to deal with was when I started to find my pillow covered in clumps of my short hairs. I decided to shave my head. It was a tough decision, but what made it a whole lot easier was a friend of mine’s mom. She was raising money and shaving her head for me as well. Thank you Jackie Carnegie. Regardless of having support through all of this, I became even more depressed. I didn’t feel like my old self anymore. I didn’t feel attractive, I couldn’t walk, I couldn’t be a nurse (if I couldn’t walk), and who knows if the chemo would even be a success.

I’ve been getting chemo now for 9 months, and it’s definitely been the hardest time of my life. I’ve been nauseous non stop, and there are some days that I can’t even get out of bed. I had a couple of doctors that made my life miserable, I had a malfunctioning CADD pump for my painkiller that kept overdosing me, and I even went through withdrawal. I lost touch over the months with a few friends, and decided not to keep up communication with the guy I had been seeing. I thought “Who would want to be with someone like me now?” He was a great person and I thought he should be with someone more like my old self, not a paraplegic who had cancer. I would cry daily with my parents, mourning my old life. I could see everything I had and everything I wanted slipping away from me. Some friends and extended family continued to visit, but even their visits just made me more upset. They asked general questions that I came to resent, such as “Are you walking yet?” and said things like “Things will get better!” which I felt to be untrue. They would talk about outings, parties and things that I desperately wanted to be a part of, but no longer could.

The chemo, however, was helping the cancer situation. I had no mets remaining, and things were looking better after the first few months of chemo. Crisis occurred again right after my birthday. I not only had a massive cancerous tumour in my foot, but a homecare nurse hadn’t watched where she was sitting on my bed, and crushed 4 bones, leaving it broken as well. When I was told I had cancer again, I was so disheartened. What made things worse was the manner in which I was told. The doctor didn’t wait until I had someone with me; he told me while I was alone in an examination room and then proceeded to look shocked when I started to sob. One doctor even mentioned that I might have to get half of my foot amputated, but that we would see what radiation could do for me first. All I could think was “Great…another reason to be miserable.”

I started getting radiation again a few weeks ago on my foot. I’m happy to report that it is now healed, back to normal size, and I am able to wear shoes again! I’m even happier to inform you all that I have had a major transformation in attitude. For so long I had laid in bed feeling sorry for myself because of all of the things I had lost, and for how sick I felt, but I came across a website the other night while researching paraplegia that changed my view. The quote at the top of the website said “It’s not what’s taken away from you that counts; It’s what you do with what you have left.” Once again I cried. Not because I felt bad for myself anymore, but because I felt so badly for the way I had behaved, and for the thoughts that I had. I posted this quote on my facebook, and a few hours later a friend commented. He said “And you will always have more left to work with than most will have ever had.” That really hit home. I was so lucky to have, and have had, the things that I currently do, or did in the past. I had had 21 perfect years. I had walked for that long and lived for that long. Some people don’t get to walk a day in their lives, and will never get that chance. So what if I couldn’t date the same kind of people that I used to, or do the things I used to. Some people never get to feel attractive, never have such a caring family, never get to go to university. I continued to read stories about other paraplegics and quadriplegics with the tears streaming down my face. I read about their accidents, their hobbies, their experiences and all I could think was “How could I have been so stupid?”

I wanted to write this note not only to help people understand my situation, but to help people learn the lesson that it’s taken me 12 months to learn. Be thankful for what you have, and don’t stress the things you don’t. So what if I don’t walk again? So what if I don’t have hair? I can still move my arms and legs, I still have my mind, I still have the same loving family, and my true friends have stuck by me though everything. Learn to value the truly important things in life.

While I’m still bald I’ve been thinking about getting my second tattoo. I’m going to tattoo that quote I found that resonated so deeply with me and it’s going to go right on my head. That way while I’m going through the rest of all this, or even if I have to go through it all again in the future, that quote will be with me. It will be in my head.

[skeetie]

Hi there, I'm still learning how to do the reply and still mess it up sry.
I am sorry to hear of your ordeal. I was diagnosed with breast cancer in 2007.
I am a nurse and worked in a general surgery clinic. I had rt mastectomy with
lymph node disection/followed by 6 mo of agressive chemo.
Before the cancer i had bilateral carpal tunnel surgery for numbness and weakness
in both hands,with no relief so they looked at my neck and i had immediate surgery
by neurosurgeon.He decompressed fro c3 to c7 with titanium placement. WELL his instrument
slipped at c7-t1 and here i am an incomplete quad.This was 6 mo after chemo 2008
They said it wasn't malpractice!!!!! Oh well what can you do.I have worked very hard to walk with
a walker, but it takes ALL my energy to get dressed that i can't do all i try to do lol
I know the feeling about the hair, i worked thru my chemo even if it was only 3 or 4 hrs. I was losing more hair with each washing so after one of my patients hugged me and brushed my hair from my forehead
came away with a bunch of my hair,well i called my beautician and shaved it all off. needless to say i cried.
well hon have to go for now. I'll keep in touch skeetie
I

Edited by skeetie, 09 July 2011 - 08:00 PM.

[goose]

Hi Justlearnng

First, I'd like to say you have a smile that will light up a room! Don't ever lose that.

You have suffered more than your share of heartache at such a tender age. At 21 you're just beggining to really enjoy life, but just because all this has happened to you doesn't mean you can't cont. to live life to the max. I can tell by your smile that you WILL make the very best of this horrible situation. You have a great and loving family...many friends who really care about you which makes you one special gal.

There will be many ups and downs but if you can learn to appreciate both times the good ones will way out shine the bad ones. Some days you will feel like crap and go ahead and cry or shout or whatever you need to do ...just get it out. Don't bottle it up so you can make room for the good times.

I was injured with a sci at age 24 and went through cancer twice. Once at 37 and then at 42. I remember thinking when will this nightmare be over. Going through cancer treatment with a sci is not easy but it can be done. I'm stronger now than I ever have been. Hearing the ''C'' word will take the breath out of you. You have been dealing with that plus all the awful side effects that cancer has caused to your body. You will be one tuff cookie!!! but sweet!!

Welcome to this site. It's a good place for learning,making new friends and to let loose alittle steam once in a while. It's a good place to come to feel accepted and to be understood. I hope you the very best in recovery and that you'll cont. to post.

[greybeard]

Hiya JustLearning,
My apologies for missing your post. Don´t know how that happened, it´s not easy to miss, is it?

Anyway - welcome to the forum. You have a good way with words and I look forward to reading more of your posts. Make sure you keep that lovely smile.

[JustLearning]

Skeetie

Wow…I’m so sorry for what’s happened to you. I can’t imagine having something like this happen to me because of an accident on the Dr’s part. I would be furious! And NOT malpractice? How could that be?

Are you still able to work in nursing at all? If not, what are you doing now (if you don’t mind me asking)?

I’m glad that you can walk with a walker, that’s one of my dreams for now. I definitely know what you mean about getting dressed. I’m huffing and puffing after just getting my sweats on, then I give up on my socks and just go barefoot most days 

Are you done chemo now? Did your hair grow back differently, or are you still waiting for it? It’s hard to be bald, especially when people stare…

Zen
I’m sorry to hear about your wife. Chemo is the worst..the nausea really gets you, but I really find stuff like popsicles helpful for that. I bought I wig when I first lost my hair and it was awful because it looked so fake! I recommend a site I used to buy my second and third, it’s http://gorgeoushairwigs.com/ the wigs there are cheap and realistic, no one ever knows I’m wearing a wig anymore

Goose
Thanks so much for the compliment first of all!
I’m very happy to meet other cancer survivors, especially if they’ve fought twice like you! I do feel like I’m tougher than I’ve ever been.
Maybe this is all just a test? If so, I’m intent on passing.

Greybeard
Thanks so much! I always enjoyed writing in high school.

[McTavish]

Welcome Lurker, I agree with the others you wrote that story so well, maybe you might take up writing in the future. I am glad that you are coming to terms with your situation. I am a paraplegic and after working hard on exercising for the past five years I am now waiting to see if I can get callipers (kafos) to enable me to walk, maybe you will be able to do the same. Never give up and also you are very young so there is a good chance that you will be able for stem cell treatment when it is available. Take care.

Sorry got your name wrong Just Learning

[wheeliebear75]

Welcome to the site.....I'm sure you'll be quite the beacon of light with your positive attitude.

The w/c acts as a filter; those who are shallow as a puddle will say/do something to let you know it usually pretty early on (this goes for both FRIENDS & more than friends).

You learned in less than a year what it took me YEARS to figure out; dwelling on what once was or what could have been doesn't make today OR tomorrow any easier, moving on & learning to accept that which we can NOT change DOES.

And again....WELCOME!

[JustLearning]

Since sharing my story I have been amazed by the overwhelming influx of supportive and understanding messages.
A lot has changed for me since I got my tattoo; That day, I began to lose feeling on the left side of my face, and decided that it would be a good idea to return to the hospital. Results from recent scans showed that cancer had spread to almost my entire body. We were worried that a tumour could be compressing my facial nerves.
The doctor agreed that because of the risk of seizures I should be admitted overnight. I sent my parents home to return in the morning.
Upon awakening, I was told the tumours in my brain were bleeding, and could likely hemorrhage or cause me to be brain dead. It was suggested that I sign DNR (do not resuscitate) orders. None of my regular doctors were around at the time to deliver the news, or discuss implications with me.
I thought that I was dying that day, and I was alone and afraid. I frantically tried to reach my family and closest friends. I started contemplating what I would say, who I wanted to send messages to, and how to tell these people I wasn’t going to be around anymore. The day continued to be horrible, as I suffered with 9/10 pain, and little relief. The next day I was reassured to find out not only that my own team of doctors were with me, but also that my death was not as imminent as it had seemed. My doctors vowed to do everything possible to control my symptoms.
Although it was horrible to be told I could die at any time, it turns out it was a blessing in disguise. My Oncologists felt at first that I might have between 2-4 months left, which made me feel so lucky, compared to the mere hours that I thought I’d had left the previous day.
Things have been progressing faster than anticipated, and my remaining time has again been revised. I have approximately one month. Originally, with the 2-4 month estimate, I had begun making a bucket list of a few special things I wanted to do. Now that I have less time, my thoughts have turned to the people that I am leaving behind, and the words and thoughts that I want to get across to them. I am not afraid of dying. I am more disappointed that I can’t be there for all the special moments in the lives of those closest to me. Although I may have less time left than I thought, I still think that living by the message that I tattooed on my head is important. The fact that time is now so limited, has made it even more difficult, but at the same time even more important to live by those words. I still feel luckier than most because I have the chance to say my thankyous and prepare my goodbyes…

It’s not what’s been taken from you,
It’s what you do with what you have left.

[cas]

Gosh- having read this thread for the first time today from start to finish, I am sitting here in tears. I am in awe of your strength and ability to write so clearly and beautifully. Sometimes life seems to be so cruel, but as you said it is all about what you do with what you have left. I wish you all the best and hope that you can achieve everything on your bucket list. All my love. Caroline. Xx

[Tatiana]

Hiya luvvy
Again....thankyou for sharing with us....and in turn allowing us the opprortunity of offering the support we can.

Your bravery, honesty and openness is an inspiration to me and im sure to us all.

Keep strong and keep that lovely head held high, you have much to be proud of..and you are one very special young lady....

please keep us updated, i will look out for you posts and will keep in touch.
If you ever want to 'chat' give me a shout,i work from home so have my window open all day almost.

jeannette xxx

[norma]

Oh my gosh...WHAT a story!!! What an emotional roller coaster ride. Praying that you are able to get that "bucket" list done. And maybe a few extras!!!

A new favorite quote...."The Failure of one plan, is not Failure at ALL, just room for inspiration"

Keep Strong and keep that attitude!!

[wheeliebear75]

This is an amazing & tragic story....and my heart goes out to you & your loved-ones.

My father was given 6-8mo to live due to advanced circulatory failure (brain, heart, kidneys if it required adequate blood flow it was being damaged) from decades of diabetes.....he managed to keep on kicking for 2&1/2yrs outliving one of his cardiologists.

Some of my fondest memories of my father are of those "simple things" like before he got sick he & I would walk down to the pandaria (Mexican bakery) to get freshly made flour tortillas & dessert cakes, and he'd let me have my pick of drinks & we'd share it on the way back. Til this day eating FRESHLY MADE flour tortillas I always remember him & of our special father daughter time together.

[jules]

Keep up the good fight and carry on. With my lung disease I was told the only other person lasted for 3 months, and I am still here at almost 3 years. I do what I want when I want to and listen to my body.

Just enjoy everything and everyone

Keep fighting

Big hugs

xx

[julibugs]

Wow you are an inspiration to all. Try and make the most of life even if it sometimes feels like your living a life that you didn't sign up for.

Sending you good wishes and lots of love, stay strong.


xx

[Dub]

Well after reading this... I am really lost for words. You are so optimistic with everything you have been through and I applaud you. I lost a young lady 4 yrs ago that was my whole world from cancer. I dont mean to tell u this to give you downward thoughts, just that I hold personal feelings toward it. You seem very strong and stubborn and Im sure that you are giving it one heck of a fight. Dont worry about the hair, from what I see you are beautiful inside and out. I hope for the best for u and will keep you and you family in my prayers.

[goose]

I remember seeing that great big smile of yours for the first time and even without knowing you it touched my heart in a big way.Then I read your story and I was even more impressed by your spirit. You have been an inspiration to many people and have touched many peoples lives. I told you you were braver than me for getting that tat but I didn't know then just how brave you really are. Cancer is a cruel beast that comes and invades our body without giving us a second thought. I'm so sorry that it chose to attact you and I hope your doctors are wrong. You have been and still are in my thoughts and prayers each day. Be strong my friend...I love you!

Edited by goose, 04 August 2011 - 06:03 AM.

[isobar]

I think you ' re a beautiful courageous person who has decided to deal with your situation in a positive light .

[LeviM]

It sounds like you've had a really rough period of your life. I don't think it's really all that uncommon for us to start out with the way of thinking and feelings that you did. I know I personally spent the first year in the dumps just slowly letting myself waste away, before something happened that caused me to reevaluate my life and attitude. The important thing is you found a way to see that the glass is not half empty, it's half full and your actions and outlook followed suit. It takes a very strong willed person to over come such hardships in life and still be able to genuinely care about their life and those that love them. Our attitude is half the battle and you're definitely going places.

[zia]

Just reading this for the first time. I am overcome with emotions. Has anyone heard from JustLearning?

[Ginny]

I read this post originally and never forgot it. The update came when I was out of town and I just saw it. My heart is so heavy to hear of the sad news. I wish it were different. JustLearning, are you out there? What's happening with you now?