I know I have not written in awhile. I've been tired, rundown, sick and fat... yes depression hit and I have been trying to pick myself up from it. This fight has been hard, more emotionally then physically. I still can't believe that I have cancer... or hopefully HAD cancer. This Friday is my last treatment. Six long months and 12 sessions have gone by FINALLY. From the agonizing pain I endured when the poison went threw my veins, to the stabbing of a sharp silver needle which has been jabbed into my left side of my chest. This is in order to reach the port that was surgically implanted in September. I just want this nightmare to end and put it behind me.
I want my hair to grow back. People think its just the hair on your head that you lose, but it is actually your eyebrows, eyelashes, arms, legs, and I know this is TMI but your va-jay-jay as well. (Yes girls I have not shaved down there for 5 months. This actually amazed me.) It freaks me out in the mirror to see these facial features gone, like I am in costume for Halloween. Thank god for my wig, not only does it cover my head, but the bangs cover where my eyebrows would be so it is not noticeable.
I just don't feel like a complete woman. I don't feel sexy at all. I am bald, 30lbs heavier... the biggest I have been in my whole life. Who knows if I will even fit in my wedding dress. Oh that's another thing which should be making me happy, but I am sad about as well. What bride wants to wear a wig?What bride wants scars to show on her chest and arms? You can airbrush them in pictures, but they are visible when you are face to face with your guest. I know I have been saying they are my battle scars, but they are a reminder of this awful disease. Something I will never want to experience again, but could possibly in the future. I am hoping not, but in reality chemotherapy can lead to other types of cancers. This is my biggest fear of them all. I just keep asking myself why me? But then I say to myself, I am alive and survived the year.
After my last treatment I have to wait 4 long weeks to take another PET scan and see how much the cancer has shrunk or even if it is there at all. After all is good and well, the port will be removed and I can go about my "normal" life. I don't even know how to live normal after this escapade. I am going to try because I have to remind myself that my cancer was 80% curable, where others are suffering and dying from theirs.
I just watched the celebration service for Jessica Joy Rees. A courageous 12 year old who lost her fight with two inoperable brain tumors on January 5, 2012. During her 10 month fight, Jessica inspired tens of thousands of people to NEGU™ (Never Ever Give Up) in life no matter what. On her 12th birthday it was the half way point of her 30 rounds of radiation therapy at Children’s Hospital Orange County. (30 rounds of chemo I cannot even imagine myself going through that, let alone a 12 year old child.) It was also the day she shared with her mom and dad that she wanted to find a way to encourage every kid fighting cancer to “NEGU“, so she decided to make joy jars.
As I watched her celebration service on the Internet, I just sat there crying. Why did a beautiful young child have to die from this monster? Why was I living and her family has to suffer? Who gets to pick and choose, God? Well if there is a God then why did he create this disgusting disease? It serves no purpose other than Death and Pain. I then think to myself if Cancer is created by sin, is the darkness that we all create by our sin? Or is cancer to remind us of our mortality and our fallen state, neither of which were His intention for us. This is why I don't believe in this person...being. Yes I may be ridiculed right now by my friends and family who do believe in him, but I'm sorry I need answers and I am just not getting them.
2011 was the year from hell. My 28th year on Earth was not liked I wished. I did say in my first blog last year that I wanted something exciting to happen to me. Well cancer was not what I intended. I will make sure I will never ask for something exciting to happen to me again.
About Me
- Michelle
- I have a past... just like anyone else. Don't judge me for the things I have done and the mistakes I have made. Because my past and my mistakes have brought me this far and has made me the person that I am today. I am perfectly content with myself. The more mistakes the more you learn... The more you're hurt the stronger you get... it's called living.
Wednesday, January 11, 2012
Wednesday, September 7, 2011
In Stride
I know its been awhile since I posted anything on my blog. A lot has happened the past couple of weeks. As most of you know I have been enduring chemo treatments since August 15th. So far the treatment has been working, but the appointments are horrible. The chemo I am given is ABVD which is a chemotherapy regimen used in the first-line treatment of Hodgkin lymphoma. It consists of concurrent treatment with the chemotherapy drugs:
When I get into the room every other Friday (twice a month), the nurse inserts an IV in my arm. Unfortunately, my veins are either too small or not thick enough which makes the treatment painful. The 1st three medications (ABV), is given by injection through the IV. My body is so sensitive, that the vein which it is going through, my skin start receiving a rash. I become itchy, but it subsides after an hour.
The last medication which is given goes through a bag intravenously. At this point my vein can no longer take it and it starts to burn so bad that I am crying uncontrollably. The IV is changed into another vein and it is better. I am usually in this room for 6 hours and all I want to do is go home. Thank god Mark is with me by my side at all my appointments.
This last treatment was horrible. I became so sick, I was vomiting for 4 hours straight and finally passed out. It was so bad, I had to be wheeled downstairs to the front of the hospital by the nurse. These past 2 weeks my hand swelled up because of the IV. I can't even wear my engagement ring, my fingers are so big.
Another crazy thing has happened, which I was in extreme denial over... my hair has started to fall out. I know I keep saying it is just hair and it grows back, but being a woman and all, it is traumatizing. I finally decided to chop my hair off since it was so annoying to wash it every day. Large strands would just come out with each stroke. My drain would be clogged and hair would be all over my body. Now, with my hair short it is not too bad. I actually like it a lot. I am just dreading when I will need to shave it off. My brother volunteered to shave his head with me and I thought that was so sweet of him.
Speaking about my family, I feel like I have grown closer to them. I get phone calls more often, even with my newly extended family. I am so grateful of the large support system I have. I know its been hard for everyone, especially Mark. He is so patient and tends to my every need. I know its a lot for him to balance work and myself. He is the only one bringing in the "bacon" and it makes me feel hopeless. I have always worked and have taken care of myself. Now for the first time I have to let someone take care of me. It is hard, but I am learning to deal with it.
It just sucks that this is happening to me now. I am supposed to be feeling exciting for my upcoming engagement party. Instead, I am worried that I will not be up to par for it. The thought of dancing and entertaining seems so exhausting. But, then I say to myself, this will be a great thing. It will make me feel normal again, being surrounded by people and not a slave in my bedroom. So what if I get tired, I will just take it slow and sit. I can speak to my guest which will be a personal touch. I know I will be fine, especially for my wedding...
...Ah my wedding. I am hoping the cancer is gone by then and no radiation is needed. I finish treatment on January 13th. I have 7 months to get myself ready, mentally and physically. The only thing that will suck is my hair will be short so a wig is needed. I am also hoping I do not have any scaring on my arms from the IV. So far I have two which are not that noticeable now, but I am hoping more do not follow.
This fight I am enduring has its ups and downs, but you know what it could be worse. I know I am doing so well, from my blood counts normalizing, to the lymph nodes which are no longer noticeable by touch on my neck. It is a struggle, but I think of it as a bad case of the stomach flu.
I will end this blog with a message a dear friend told me which has stuck in my mind. With each strand of my "hair leaving, the cancer is going with it. It is a sign of starting over."
When I get into the room every other Friday (twice a month), the nurse inserts an IV in my arm. Unfortunately, my veins are either too small or not thick enough which makes the treatment painful. The 1st three medications (ABV), is given by injection through the IV. My body is so sensitive, that the vein which it is going through, my skin start receiving a rash. I become itchy, but it subsides after an hour.
The last medication which is given goes through a bag intravenously. At this point my vein can no longer take it and it starts to burn so bad that I am crying uncontrollably. The IV is changed into another vein and it is better. I am usually in this room for 6 hours and all I want to do is go home. Thank god Mark is with me by my side at all my appointments.
This last treatment was horrible. I became so sick, I was vomiting for 4 hours straight and finally passed out. It was so bad, I had to be wheeled downstairs to the front of the hospital by the nurse. These past 2 weeks my hand swelled up because of the IV. I can't even wear my engagement ring, my fingers are so big.
Another crazy thing has happened, which I was in extreme denial over... my hair has started to fall out. I know I keep saying it is just hair and it grows back, but being a woman and all, it is traumatizing. I finally decided to chop my hair off since it was so annoying to wash it every day. Large strands would just come out with each stroke. My drain would be clogged and hair would be all over my body. Now, with my hair short it is not too bad. I actually like it a lot. I am just dreading when I will need to shave it off. My brother volunteered to shave his head with me and I thought that was so sweet of him.
Speaking about my family, I feel like I have grown closer to them. I get phone calls more often, even with my newly extended family. I am so grateful of the large support system I have. I know its been hard for everyone, especially Mark. He is so patient and tends to my every need. I know its a lot for him to balance work and myself. He is the only one bringing in the "bacon" and it makes me feel hopeless. I have always worked and have taken care of myself. Now for the first time I have to let someone take care of me. It is hard, but I am learning to deal with it.
It just sucks that this is happening to me now. I am supposed to be feeling exciting for my upcoming engagement party. Instead, I am worried that I will not be up to par for it. The thought of dancing and entertaining seems so exhausting. But, then I say to myself, this will be a great thing. It will make me feel normal again, being surrounded by people and not a slave in my bedroom. So what if I get tired, I will just take it slow and sit. I can speak to my guest which will be a personal touch. I know I will be fine, especially for my wedding...
...Ah my wedding. I am hoping the cancer is gone by then and no radiation is needed. I finish treatment on January 13th. I have 7 months to get myself ready, mentally and physically. The only thing that will suck is my hair will be short so a wig is needed. I am also hoping I do not have any scaring on my arms from the IV. So far I have two which are not that noticeable now, but I am hoping more do not follow.
This fight I am enduring has its ups and downs, but you know what it could be worse. I know I am doing so well, from my blood counts normalizing, to the lymph nodes which are no longer noticeable by touch on my neck. It is a struggle, but I think of it as a bad case of the stomach flu.
I will end this blog with a message a dear friend told me which has stuck in my mind. With each strand of my "hair leaving, the cancer is going with it. It is a sign of starting over."
Saturday, July 16, 2011
1,2,3...
Four. Stage 4 Classic Hodgkin's Lymphoma is the complete and final diagnosis. That number seems scary, I know, but once again I didn't cry or get shaken up. It is not a death sentence like the other cancers in the world. I have a great cure rate, 85-95% are the statistics. My oncologist informed me on everything from treatments to other tests I will need to take. I will probably start chemo some time in August. However, I have to first speak to my gynecologist and seek his approval if I need to freeze my eggs, or if I will be completely fertile after treatment. My oncologist doesn't think I will have an issue, but since I also have Poly Cystic Ovary Syndrome, I should get a second opinion.
August 25th, will probably be the first day I will be hooked up to a chemo drip... ABVD they call it. Three to four hours I will have this poison running through my veins killing everything in sight. I will be sick that day and probably the next, but I was told after that I will be able to do my normal routine, like food shopping and laundry. I want to try and schedule my appointments for Thursdays, where Fridays I will work from home and have the weekend to recuperate. I cannot take a leave of absence like I did before. I need to save for my wedding, which cancer will not stop me from having. Chemo will be once a week, every two weeks for six months. I will be completed with treatment hopefully by March, which will be months before the happiest day of my life.
I will start to lose my hair 1-2 weeks after my first treatment. I may be completely bald, or I may lose patches my oncologist said. He will give me a prescription for a wig, which will be covered by my insurance company. I will also have to be on antibiotics since I will have an extremely low white blood cell counts and will be highly accessible to infections. My plan in order to not to get sick will be taking the express bus to work instead of the nasty train, and wearing a surgical mask and gloves at the workplace. I deal with a lot of paper which is being transported from once place to another. The messengers who deliver these packages are nasty and who knows what they carry. Plus, there are some people who I work with that are not the most hygienic.
I do not want my cancer to stop me from being normal. I was told I have the"best" cancer to get, and will be fine in six months. I know I will have my good days and my bad days, but I will get through it. This will make me a stronger person and allow me to open up my eyes to the little things in life. I will try not wearing a wig and will wrap my head with a scarf. It is going to be too hot to wear something heavy like a fake hair on my head in the summer. I will probably be pre-menopausal, so I want to be as comfortable as possible.
It is so surreal I am going through this at 28 years old. I did write in my first blog I wanted something exciting to happen in my life, well I guess I got what I wished for.
August 25th, will probably be the first day I will be hooked up to a chemo drip... ABVD they call it. Three to four hours I will have this poison running through my veins killing everything in sight. I will be sick that day and probably the next, but I was told after that I will be able to do my normal routine, like food shopping and laundry. I want to try and schedule my appointments for Thursdays, where Fridays I will work from home and have the weekend to recuperate. I cannot take a leave of absence like I did before. I need to save for my wedding, which cancer will not stop me from having. Chemo will be once a week, every two weeks for six months. I will be completed with treatment hopefully by March, which will be months before the happiest day of my life.
I will start to lose my hair 1-2 weeks after my first treatment. I may be completely bald, or I may lose patches my oncologist said. He will give me a prescription for a wig, which will be covered by my insurance company. I will also have to be on antibiotics since I will have an extremely low white blood cell counts and will be highly accessible to infections. My plan in order to not to get sick will be taking the express bus to work instead of the nasty train, and wearing a surgical mask and gloves at the workplace. I deal with a lot of paper which is being transported from once place to another. The messengers who deliver these packages are nasty and who knows what they carry. Plus, there are some people who I work with that are not the most hygienic.
I do not want my cancer to stop me from being normal. I was told I have the"best" cancer to get, and will be fine in six months. I know I will have my good days and my bad days, but I will get through it. This will make me a stronger person and allow me to open up my eyes to the little things in life. I will try not wearing a wig and will wrap my head with a scarf. It is going to be too hot to wear something heavy like a fake hair on my head in the summer. I will probably be pre-menopausal, so I want to be as comfortable as possible.
It is so surreal I am going through this at 28 years old. I did write in my first blog I wanted something exciting to happen in my life, well I guess I got what I wished for.
Friday, July 8, 2011
Well we have a diagnosis after 4 months....
... four months of blood test, four months of many doctors feeling here, feeling there. A poke, a jab, a pinch, a pill. All these things which should have lasted for days, lasted for months. A small cut of the neck, and a removal of a lymph node which has been in the same spot for 2 years, gave the answer to all the questions.
CANCER.
Classic Hodgkin's Lymphoma was the diagnosis. I went into the bathroom at worked and looked at myself in the mirror when the doctor was talking to me. I didn't cry, I didn't even stop and stare in space. I knew I had it when everyone was in denial. I actually felt a weight lifted off my shoulders. No more questions of what is wrong with me. I finally am able to think about making myself better and beating whatever it was. After the call, I went into the kitchen at work and ate my lunch like a regular day.
The doctor appointment is next Thursday with my oncologist. He will let me know what the next steps are and how to deal with it. I will have to get a PET scan and a bone marrow test to find out what stage I am in, then I will know if I need chemo, radiation, chemo/radiation, or chemo/stem cell. I will also need to take my eggs and Mark's sperm to freeze embryos. This is to allow me to have babies after treatment and when I'm well. I don't see myself have treatment though for another month.
I still can't believe I am a cancer patient. Is something wrong with me that I can't stop saying it. I know it's going to be an emotional roller coaster, but I have a large support system and the doctor said I have nothing to worry about. Yes I will be tired, yes I will be sore and weak, and yes I will lose my hair. But after all of these meaingnless things, I will be better and live a long and happy life. I will have my wedding, have my babies and enjoy life. So don't be sad for me. Instead support me and know that I am okay with all of this and its just another bump in the road (roe-add) LOL.... Tommy Boy moment.
CANCER.
Classic Hodgkin's Lymphoma was the diagnosis. I went into the bathroom at worked and looked at myself in the mirror when the doctor was talking to me. I didn't cry, I didn't even stop and stare in space. I knew I had it when everyone was in denial. I actually felt a weight lifted off my shoulders. No more questions of what is wrong with me. I finally am able to think about making myself better and beating whatever it was. After the call, I went into the kitchen at work and ate my lunch like a regular day.
The doctor appointment is next Thursday with my oncologist. He will let me know what the next steps are and how to deal with it. I will have to get a PET scan and a bone marrow test to find out what stage I am in, then I will know if I need chemo, radiation, chemo/radiation, or chemo/stem cell. I will also need to take my eggs and Mark's sperm to freeze embryos. This is to allow me to have babies after treatment and when I'm well. I don't see myself have treatment though for another month.
I still can't believe I am a cancer patient. Is something wrong with me that I can't stop saying it. I know it's going to be an emotional roller coaster, but I have a large support system and the doctor said I have nothing to worry about. Yes I will be tired, yes I will be sore and weak, and yes I will lose my hair. But after all of these meaingnless things, I will be better and live a long and happy life. I will have my wedding, have my babies and enjoy life. So don't be sad for me. Instead support me and know that I am okay with all of this and its just another bump in the road (roe-add) LOL.... Tommy Boy moment.
Saturday, June 18, 2011
The starting of the fight might have just begun.
Life was good. Normalcy was back in my life. I went back to work, started hanging out with my friends and planning my wedding. I really thought everything was behind me and I can move on with my life. Then February came again. The eruption of back pain started, and this time in full force. A new doctor was introduced and the poking/prodding started all over. A needle aspiration in a swollen lymph node of my neck may have given me a conclusion to this chapter of my diagnosis. Classical Hodgkin's Lymphoma I was told, which almost put me in cardiac arrest.
I was just about to lay on a hospital bed because of the back pain, when I got the call from the ENT doctor from Cornell/Presbyterian. "The pathologist found A-typical cells of Classical Hodgkin's Lymphoma, but we need to have that biopsy done to make a 100% diagnosis." My stomach dropped and my heart was racing. The nurse came and started plugging me in to all these machines. "Why does she need to be on a monitor," my friend asked. The nurse replied my heart rate is through the roof as well as my blood pressure. Once I was plugged in, the monitor began beeping. I turned around and saw bright green numbers reading 136. Four nurses were watching the monitor and said I need to calm down because I am tacking. Great, now I'm going to have a damn heart attack because of all this. I just closed my eyes, cleared my head and thought about sandy beaches. I had to control myself with the news I just received.
14 months will come in a flash. All I am thinking about is if this is Lymphoma, I will be a bald bride. My beautiful lace dress draping against the floor. The wind blowing petals off my flowers, and there is me... the hot sun beating against my bald head. I know I would be crying down the aisle not because of my looks, but because I have been through the treatment which I fought and won the battle. I am marrying the man of my dreams and there is nothing which can stop our love.
It's just the babies... which I will probably never have. To feel life inside of me growing and kicking. Having the uncontrollable love and desire for the the one thing which makes me a woman. I know there is adoption and I have always been for it, but it is not the same. Don't take me wrong, I will love and cherish my child however it is brought to me, but the invisible umbilical cord from mother to child will never be there. I was told early on when all this was happening, I could freeze my eggs, but my insurance will not cover it. Plus who knows if my eggs are even good. Between my poly cystic ovary syndrome, and now possibly the big C, they may be sunny side up and runny. Do I spend the money on freezing and the hope of carrying a baby, or adoption?
I'm too young for this shit. At least the ENT doctor told me it is a very treatable cancer and I have nothing to worry about. Just the thought of having chemo or radiation is mind boggling. I blame myself for this. When I was younger and I was upset at things I used to wish I had cancer and just die. I said it too much and now the Cancer is coming true. But I won't die... because I have too much to live for and I haven't accomplished pissing off the world.
I was just about to lay on a hospital bed because of the back pain, when I got the call from the ENT doctor from Cornell/Presbyterian. "The pathologist found A-typical cells of Classical Hodgkin's Lymphoma, but we need to have that biopsy done to make a 100% diagnosis." My stomach dropped and my heart was racing. The nurse came and started plugging me in to all these machines. "Why does she need to be on a monitor," my friend asked. The nurse replied my heart rate is through the roof as well as my blood pressure. Once I was plugged in, the monitor began beeping. I turned around and saw bright green numbers reading 136. Four nurses were watching the monitor and said I need to calm down because I am tacking. Great, now I'm going to have a damn heart attack because of all this. I just closed my eyes, cleared my head and thought about sandy beaches. I had to control myself with the news I just received.
14 months will come in a flash. All I am thinking about is if this is Lymphoma, I will be a bald bride. My beautiful lace dress draping against the floor. The wind blowing petals off my flowers, and there is me... the hot sun beating against my bald head. I know I would be crying down the aisle not because of my looks, but because I have been through the treatment which I fought and won the battle. I am marrying the man of my dreams and there is nothing which can stop our love.
It's just the babies... which I will probably never have. To feel life inside of me growing and kicking. Having the uncontrollable love and desire for the the one thing which makes me a woman. I know there is adoption and I have always been for it, but it is not the same. Don't take me wrong, I will love and cherish my child however it is brought to me, but the invisible umbilical cord from mother to child will never be there. I was told early on when all this was happening, I could freeze my eggs, but my insurance will not cover it. Plus who knows if my eggs are even good. Between my poly cystic ovary syndrome, and now possibly the big C, they may be sunny side up and runny. Do I spend the money on freezing and the hope of carrying a baby, or adoption?
I'm too young for this shit. At least the ENT doctor told me it is a very treatable cancer and I have nothing to worry about. Just the thought of having chemo or radiation is mind boggling. I blame myself for this. When I was younger and I was upset at things I used to wish I had cancer and just die. I said it too much and now the Cancer is coming true. But I won't die... because I have too much to live for and I haven't accomplished pissing off the world.
Wednesday, April 20, 2011
A step closer
After three trains, a missed stop, 12 blocks of walking, and I really had to pee, I may have found the answer I have been looking for. I was told by my infectious disease doctor that my blood test came back positive for Epstein Barr Virus.
Epstein-Barr Virus (EBV) is a common human virus that causes infectious mononucleosis and may play a role in the emergence of two rare forms of cancer: Burkitt's lymphoma, and nasopharyngeal carcinoma.
Some doctors and medical textbooks describe and diagnose EBV as infectious mononucleosis and vise-versa. Although the symptoms of infectious mononucleosis usually resolve in one or two months, the EBV remains dormant in cells in the throat and blood for the rest of the person's life. Periodically, the virus can be reactivate and can be found in the saliva of infected persons. This reactivation usually occurs without symptoms of illness. EBV also establishes a lifelong dormant infection in some cells of the body's immune system.
I was informed by the infectious disease doctor, to still consult with the lymphoma specialist from Cornell to 100% rule out any type of lymphoma. If lymphoma is off the table, then this whole time I was suffering from EBV.
It make sense since I had mono when I was 16 and my spleen was enlarged. If it is EBV it will take about 6 months for the virus to take its course, and a year for my spleen, liver and lymph nodes to go back to its natural size.
You think they would have tested this in the beginning when I first gave my history to the 15+ doctors and 60+ vials of blood in the past 3 months. Yes 60+ vials of blood. No wonder why I am anemic right?!
Epstein-Barr Virus (EBV) is a common human virus that causes infectious mononucleosis and may play a role in the emergence of two rare forms of cancer: Burkitt's lymphoma, and nasopharyngeal carcinoma.
Some doctors and medical textbooks describe and diagnose EBV as infectious mononucleosis and vise-versa. Although the symptoms of infectious mononucleosis usually resolve in one or two months, the EBV remains dormant in cells in the throat and blood for the rest of the person's life. Periodically, the virus can be reactivate and can be found in the saliva of infected persons. This reactivation usually occurs without symptoms of illness. EBV also establishes a lifelong dormant infection in some cells of the body's immune system.
I was informed by the infectious disease doctor, to still consult with the lymphoma specialist from Cornell to 100% rule out any type of lymphoma. If lymphoma is off the table, then this whole time I was suffering from EBV.
It make sense since I had mono when I was 16 and my spleen was enlarged. If it is EBV it will take about 6 months for the virus to take its course, and a year for my spleen, liver and lymph nodes to go back to its natural size.
You think they would have tested this in the beginning when I first gave my history to the 15+ doctors and 60+ vials of blood in the past 3 months. Yes 60+ vials of blood. No wonder why I am anemic right?!
Thursday, April 7, 2011
Question mark
1. Primary Doctor - Thought I had Celiac disease, but test came back negative.
2. Oncologist - Has no idea what is wrong with me and testing me for everything under the sun.
3. Gastrologist - Had no input. Just stuck his finger up my rectum and made an appointment for my colonoscopy.
4. Rheumatologist - Stated, "Rheumatologist are the last resort when doctor's are unsure of a diagnosis. I have seen patients who are not a text book case like 'myself' and they will never be diagnosed. It was usually just a bad infection and went away on it's own." Results came back today and I am clear of any rheumatoid issues. I do have an antibody for Lupus, but people can carry it and could be a red-herring. My oncologist will be consulting with my rheumatologist and will get back to me shortly.
5. Biopsy - Took a month for the report to tell me negative for Non-Hodgkin's lymphoma, but inconclusive for the other 40 types.
6. Colonoscopy - Grossly normal, as stated on the report.
7. Endoscopy - Clear
8. Over 20 vials of blood within the last 2 1/2 months- Currently my white blood cells at 20,000, elevated red blood cells, platelets, ESR (E. Sedimatation Rate), CRP (c-reactive protein at 88.9, normal is 4.9), LVH (Lactate dehydrogenase) and Alk phosphatase (ALK). These test confirm massive inflammation and because of this I am anemic.
Next up, infectious disease doctors will consult with me and see if I have Lyme disease, cat scratch fever and any other crazy illnesses the world has to offer. If those test are negative, I will need a bone marrow test to see if lymphoma is back on the list. If that is negative, another biopsy of my lymph node will be done. This time it will mean surgery where one will be taking out and looked at thoroughly. I would be seeing the guru of lymphoma at Cornell for his expertize. After that I am not sure what is going to happen.
I thought I would have answers already. I can't stand being poked and prodded any longer. It is driving me insane and making me highly depressed. My twelve weeks are almost up and I need to go back to work. No work, no money, no money, no house, no house, no marriage, no marriage, no kids. Sometimes I think if I was to get hit by a car and die, maybe a autopsy would give my family and loved ones some answers. You can't get more thorough than that.
If they can't find anything that's great I guess. But I spent all this time being a damn Guinea pig and worrying. Why are my CBCs coming back high? Why are my lymph nodes swollen to the size of ping pong balls? There has to be a reason, it just can't be a reactive lymph node.
I feel like being destructive. I wish I still did drugs so I can just numb myself from all this insanity.
2. Oncologist - Has no idea what is wrong with me and testing me for everything under the sun.
3. Gastrologist - Had no input. Just stuck his finger up my rectum and made an appointment for my colonoscopy.
4. Rheumatologist - Stated, "Rheumatologist are the last resort when doctor's are unsure of a diagnosis. I have seen patients who are not a text book case like 'myself' and they will never be diagnosed. It was usually just a bad infection and went away on it's own." Results came back today and I am clear of any rheumatoid issues. I do have an antibody for Lupus, but people can carry it and could be a red-herring. My oncologist will be consulting with my rheumatologist and will get back to me shortly.
5. Biopsy - Took a month for the report to tell me negative for Non-Hodgkin's lymphoma, but inconclusive for the other 40 types.
6. Colonoscopy - Grossly normal, as stated on the report.
7. Endoscopy - Clear
8. Over 20 vials of blood within the last 2 1/2 months- Currently my white blood cells at 20,000, elevated red blood cells, platelets, ESR (E. Sedimatation Rate), CRP (c-reactive protein at 88.9, normal is 4.9), LVH (Lactate dehydrogenase) and Alk phosphatase (ALK). These test confirm massive inflammation and because of this I am anemic.
Next up, infectious disease doctors will consult with me and see if I have Lyme disease, cat scratch fever and any other crazy illnesses the world has to offer. If those test are negative, I will need a bone marrow test to see if lymphoma is back on the list. If that is negative, another biopsy of my lymph node will be done. This time it will mean surgery where one will be taking out and looked at thoroughly. I would be seeing the guru of lymphoma at Cornell for his expertize. After that I am not sure what is going to happen.
I thought I would have answers already. I can't stand being poked and prodded any longer. It is driving me insane and making me highly depressed. My twelve weeks are almost up and I need to go back to work. No work, no money, no money, no house, no house, no marriage, no marriage, no kids. Sometimes I think if I was to get hit by a car and die, maybe a autopsy would give my family and loved ones some answers. You can't get more thorough than that.
If they can't find anything that's great I guess. But I spent all this time being a damn Guinea pig and worrying. Why are my CBCs coming back high? Why are my lymph nodes swollen to the size of ping pong balls? There has to be a reason, it just can't be a reactive lymph node.
I feel like being destructive. I wish I still did drugs so I can just numb myself from all this insanity.
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