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Member
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Joined: Jun 12 2005
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Jun 26 2012 10:29am
Most of the following is what has been told to me because I have no memory of it whatsoever for various reasons.

On May 18th 2012 at approximately 3 a.m. I got out of bed went to the bathroom and got sick. I went back to bed. Then I got back up and did the same thing. This happened 1 more time. My fiance said after the 3rd time it sounded as if I was choking and she went in to check on me. She said that I was having a seizure. I am not epileptic or prone to seizures. She called 911 and asked for an ambulance. When they arrived, they incubated me and transported me to the hospital. I was taken to the C.I.C.U. I was given an MRI. 4 tumors had caused my brain to swell, which caused me to have the seizure. There was also bleeding. The doctor went into the room where she was and told her that I probably was not going to make it. The doctors did whatever they did to stop the bleeding and reduce the swelling.Obviously I made it. I thank God for this. I didn't wake up until Monday. That is the first day I recall somewhat anyway even though most of it is still fuzzy. I was given additional MRI's and PT scans. During this they found multiple masses (tumors) in my colon. They told me that they had to do a colonoscopy.This was done on the 22nd. They removed all of the masses and I was told that they were benign. I thank God for this as well.There are only 2 choices. Benign and cancerous. I was discharged on the 24th. Was scheduled for a biopsy on June 21st. In the meantime I was prescribed anti-swelling ( dexamethsone) and anti-convalescent ( phenytoin) drugs.

There is a lengthy list of side effects from the Dexamethzone and I have quite a few of them. About 1/2 at least. Muscle loss, weight loss, memory loss, short temper among other things. The hallucinations are weird. Earlier I saw the Google sign flashing across my monitor and my t.v. Mostly it's just seeing stuff moving that really isn't. Only a few times have I actually seen something that wasn't really there. I'm not sure if it's the drugs or the tumors, but my taste buds are out of whack. I am pretty sure it's the drugs since it only started after a while after I started taking them. A lot of things taste different. Some things that I used to like now taste either blah ( like cardboard) or I don't like at all now. I had a ham sandwich with spicy brown mustard. It had almost no taste at all. It didn't taste like a ham sandwich with spicy brown mustard. I could tell I was eating something, but there was no specific taste. Looks like I am going to have to experiment to find out what I like and don't like anymore. And to find out what just has no taste. It is so strange not knowing if you like something or not when you used to know. "Do you like......?" "I dunno....now....."

I was readmitted on the 21st at 7 a.m. for more testing before surgery. The surgery took place at approximately 3p.m. Instead of drilling a small hole and just doing a biopsy, they decided to go ahead and remove the whole tumor. After the surgery while in the recovery room I had three seizures. They doubled my meds to control them.The next thing I remember is waking up sometime Saturday afternoon. I was told that I was awake and answering questions before then , but I don't remember any of it.

Sometime after my release the first time my feet,ankles and knees started swelling up. Feet and ankles more so than knees. They became incredibly large and prosthetic looking. So big,I could not get them into my sneakers. They were much too tight. We figured it was most likely the side effects of the Dexamethasone. ( Oddly enough one of the side effects of the anti-swelling med was swelling of the hands and feet.) Or possibly a side effect of the issues I was having with my brain. After my surgery the swelling went away. They started hurting. It was a light sharp pain at first. It didn't take long for it to progress into a very intense sharp pain. It was the worst pain I have ever felt in my life. I was literally screaming for someone to help me. At that point I can honestly say it was so bad I did not care if they just amputated both legs. They gave me 2 Percosets. Since I am not a drug user,we figured that they would reduce/stop the pain. No. It had no affect at all. They decided to give me a Morphine push. This is what they give you through an I.V.. They injected it into the one that I had in my neck. We figured that on top of the Percosets should certainly do the job. Wrong. That also had no affect. At all. Then they gave me Vicodin. The combination of all 3 drugs knocked me out for about 1 1/2 days. That was the only way to stop the pain. Knock me out. I was discharged the next day.

I was told to schedule another appointment with my neurologist within 7-10 days. I am assuming he will check what was done and talk with me about additional surgery. I am also supposed to schedule an appointment with my oncologist. I am not sure if I will actually need an oncologist if everything is benign since they treat cancer patients. As far as I know that is the only thing they do. However, until I actually talk to him and get the facts of what is what, you can call me clueless. I know they treat cancer patients, but I don't know what else they may do in certain cases or what might have to be done.

I will be sure to keep this updated as events occur. I am doing this partially for myself ( my memory thing) and for others who may find themselves in a similar or other type of medical situation. Maybe it will give someone hope and give them the will to fight instead of just giving up. I completely understand that there are others who are much worse off than me and could give better stories of hope and inspiration. I just want to do what I can to maybe help someone else.



Member
Posts: 20,453
Joined: Jun 12 2005
Gold: 277.70
Jul 1 2012 09:12am
Here is the original link provided by my wife in Ladder Slasher. ( not officially married but we have been together 10+ years <3 )

http://forums.d2jsp.org/topic.php?t=62509318&f=272

This is a link to the operation ( the results of the post op). I am only posting a link in case it is offensive to some of the more squeamish people.

http://i21.photobucket.com/albums/b261/zeusxoa/IMG_3283.jpg


This is a picture of my foot. The main one I was talking about above:



I have an appointment scheduled with my oncologist tomorrow. I'll have to schedule another appointment with my neurologist sometime after they talk and make a plan on how to take it from there. They changed my med prescription. Added some of one thing to another ( added an additional anti seizure to the one i was already taking) and changed the dosage and times of others. The side effects are incredible. I sleep a lot. When I'm not sleeping, I am sleepy,sore, tired and weak. I am hallucinating. My taste buds have changed. Again. The heartburn/indigestion is incredibly bad even though I am getting the prescription version of Prilosec. I have a list of them I could post but these are the main ones. Even though all of this sounds bad I am still grateful because I know it could be worse. I have to look at it that way. I'll update again whenever I have something new to add.
Member
Posts: 20,453
Joined: Jun 12 2005
Gold: 277.70
Jul 3 2012 12:25am
Went to see my Oncologist today. Got a somewhat different story from the one I got from my Neurologist. According to him, my neurology team only removed a small sample for a biopsy. I was told it was cancerous. I find it amazing that 2 different doctors gave me 2 different stories. Of course the oncologist won't get paid ( service not needed I don't think - refer to above) if it isn't cancer. Maybe I'm just in denial, but I find it hard to believe that they can have the exact opposite story of the same event. They ( the oncology and the neurology teams ) told me that they cannot figure out where it came from. They said it wasn't a primary ( started in the brain) but also that they cannot find where it metastasized from. They used some type of dye during my last scan trying to find out where it could have come from. They said the only things that "lit up" were my colon ( all non cancerous) and my brain. Now they are telling me that there could be some "seeds" that didn't show up but could be spreading it. They also told me that even though it was in the brain and it wasn't a primary ( contradictory to what my neurology team told me) and they couldn't figure out where it came from that it wasn't brain cancer. I really don't understand that. I have another appointment with my neurologist on the 10th. I am going to be sure to question him thoroughly about what was done and what needs to be done. According to my oncology team they are talking about radiation and chemotherapy. I think I need to question them a little more than I did. I do know that I need a tape recorder for these visits. It's hard enough to remember the small details. It's close to impossible to remember details when they are using words like squamous cell carcinoma and neoplasm. I'm not sure what to believe. I do know that I am going to ask for more tests to be done and that I am going to be requesting copies of everything that they have. I am seriously considering getting an opinion from another doctor. Tell him ( or her) to run all of the tests needed and to let me know if it is primary or metastasized and if it is cancerous or benign. Like I said, maybe I'm just in denial. It's kinda hard to get hit with " you have cancer". Especially when you know it's in the brain. Much less anywhere else. I am still hopeful that even if it is the worst case scenario, they have all kinds of technology now to give you more years and to make you feel better ( physically). Maybe they will come out with something else even better while I am being treated. According to them I am looking at almost a year ( give or take depending) of radiation ( 5 days a week) and chemo ( 1 day a week) so who knows what might happen in the meantime. Not that I am looking for or even expecting a "cure" but something that will give me a little more time with less treatments.
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