I am getting stir crazy to say the least. You know you've been in the hospital too long when the janitors know you on a first name basis. Time for me to go.
The lung biopsy they did via needle a few weeks ago showed nothing. So they decided to do another biopsy on me yesterday, were they stuck a camera down my windpipe to get tissue samples. Of course, no result yet.
There has been some talk about discharging me this weekend, I really hope It happens. I've been felling better. A little stronger every day. Definitely ready to get out of here.
Tuesday, February 22, 2011
Tuesday, February 15, 2011
Feburary 15th - OMG I've been here a month!
As I think I've mentioned before, I have a very hard time writing about my experiences while I am going through them, especially if they are traumatic. It's much easier to write when I feel as though I have gotten through the worse of it. But in all honestly, the biggest reason for my delay in posting this time is that I have been heavily medicated though the past weeks. Once I had finished my four day chemo ordeal (which of course, turned unto 5), my swallowing issues and sores in my mouth and throat just got worse. The pain was so severe, I spent most of the time sleeping from being so heavily medicated. When I was awake I could barely form coherent sentences and text messages, so I really didn't want to embaress myself by trying to put together a post that made no sense. Now that my counts have finally started to come in, and my sores in my throat and mouth have impproved here's a quick recap of past couple weeks.
I felt extremely sick as promised and the pain in my throat was unrelenting, I lost the ability to swallow, even water, by the beginning of February. Which is a very weird feeling. You still have an appetite, so you want to eat but that first bite of pudding goes down like shards of glass you quickly remember why you gave up entire eating. I received bags upon bags of blood from all of my donor heroes out there. I even spent a brief stay in the ICU because they I had an infection and they couldn't regulate my blood pressure. Pretty scary stuff.
Couple good things I can say about the last few weeks is that time has gone by fast. Also it's been great having mom and Heath down here with me. Of course, I am not recovering as fast as I would have liked too, I was actually supposed to be dicharged this past monday, but I continue to hit a few speed bumps along the way. And if my wish for prayers and well wishes haven't worn out, I have one to ask.
They found a spot on my lung durning my last CT scan and they are going to do a biopsy of it Wednesday to determine what it is. They think it may be some kind fungal or bacterial infection but they want to know what it is they are dealing with so they know how best to treat it best.
Thanks for all of your love and support.
I felt extremely sick as promised and the pain in my throat was unrelenting, I lost the ability to swallow, even water, by the beginning of February. Which is a very weird feeling. You still have an appetite, so you want to eat but that first bite of pudding goes down like shards of glass you quickly remember why you gave up entire eating. I received bags upon bags of blood from all of my donor heroes out there. I even spent a brief stay in the ICU because they I had an infection and they couldn't regulate my blood pressure. Pretty scary stuff.
Couple good things I can say about the last few weeks is that time has gone by fast. Also it's been great having mom and Heath down here with me. Of course, I am not recovering as fast as I would have liked too, I was actually supposed to be dicharged this past monday, but I continue to hit a few speed bumps along the way. And if my wish for prayers and well wishes haven't worn out, I have one to ask.
They found a spot on my lung durning my last CT scan and they are going to do a biopsy of it Wednesday to determine what it is. They think it may be some kind fungal or bacterial infection but they want to know what it is they are dealing with so they know how best to treat it best.
Thanks for all of your love and support.
Sunday, January 23, 2011
January 23rd - Second Day of Transplant Chemo
I started my 4 days straight days worth of chemo yesterday morning. But I am also still suffering greatly from the two weeks of radiation. Things are getting harder. I'm not going too lie, but tell it as it is, no sugar-coating here. It has been challenging. But the nurses have been good about keeping my pain and nausea under control. I have severe radiation burns all over my upper chest and neck. When they finally put the new catheter in on Tuesday they used a large amount medical tape and dressing so when the tape had to come off yesterday, so did a lot of my skin. That of part my shoulder and neck are very painful and raw. The docs are a little concerned that I have so many burns and open skin wounds on my body but there is not much to do more then keep it as covered and protected as much as possible.
Swallowing has gotten down right impossible. They have me pretty heavily medicated to get me to swallow. Even water feels like needles going down my throat. I also have a lot of swelling and burning in my chest. I now have a PCA pump (I think it stands for "Patient controlled analgesia"). It works great cause it gives me a low dose of pain meds around the clock so I never wake up in horrific pain. Then there is a button that I can push whenever needed which gives a slightly higher dose to take the edge off, especially to swallow pills and meals.
Of course, this means I am feeling a lot more than fuzzy in the head lately (also there is chemo-brain too) and if you have emailed me, texted me or sent me a facebook message and I haven't been quick to respond to you because I'm eitherly heavily sedated or just plain sleeping through the pain.
BTW, this is either an alien transformer trying to abduct me from my hospital bed or just a harmless IV pole... you decide :)
Swallowing has gotten down right impossible. They have me pretty heavily medicated to get me to swallow. Even water feels like needles going down my throat. I also have a lot of swelling and burning in my chest. I now have a PCA pump (I think it stands for "Patient controlled analgesia"). It works great cause it gives me a low dose of pain meds around the clock so I never wake up in horrific pain. Then there is a button that I can push whenever needed which gives a slightly higher dose to take the edge off, especially to swallow pills and meals.
Of course, this means I am feeling a lot more than fuzzy in the head lately (also there is chemo-brain too) and if you have emailed me, texted me or sent me a facebook message and I haven't been quick to respond to you because I'm eitherly heavily sedated or just plain sleeping through the pain.
BTW, this is either an alien transformer trying to abduct me from my hospital bed or just a harmless IV pole... you decide :)
Sunday, January 16, 2011
January 16th & 17th Typical hospital BS
Sorry for the late post. The morphine is making my brain fuzzy and I don't want to make myself look too stupid.
I made it through my first week of radiation last week. It seems like I spent the whole week either waiting to see a doctor or in the treatment room.
Radiation was not what I was expecting. Each treatment was boost radiation and only about 20 minutes. I had radiation to my upper chest and the front and back of my neck. Most of that time was just positioning me correctly. The radiation beams don't hurt, you can't even feel them during treatment. But you certainly do later!
By Wednesday I was really starting to hurt. Started out just feeling achy, like I over did it at the gym (wait, how would I even know what that feels like!?) By Thursday afternoon, breathing and swallowing became painful. Friday I was a mess, even walking became difficult and the only thing I could was water and even that was difficult. This was upsetting because I was told the swallowing problems wouldn't begin until later on in my treatment. Even the radiation docs didn't understand why I was having such severe symptoms so early.
Sunday morning I was admitted to the hospital, and the miscommunication began immediately. My stem cell doctor had told me more than once that my new catheter in my chest would be placed that day, but when I got here, the nurses had no idea what I was talking about. They basically accused me of lying or "hearing him incorrectly". But I promised me it would be done on Monday, right after my radiation.
Sunday night they started me on a continuous iv drip of a drug that has given me migraines, but insisted that I had to have it cause it was the only one they use. By Monday morning I had a severe headache and could hardly open my eyes. The doctors made their "rounds" and I asked again if it could be change, no again.
Right before going down for my second radiation, a nurse came in a suggested a different drug they could use, but it wasn't going to be approved until after I got back from radiation. At this point I felt really horrible, if you have ever had a migraine you know what I mean when I say it effects more then just the head, I was feeling really sick too.
They brought me down for radiation and it took extra long because they need more films apparently, so I was on the metal table with my chin taped up for more than an hour. When they sat me up and put me in the wheelchair I started vomiting. They gave me anti nausea drugs and got it under control and sent me to the OR area to have my catheter placed. When I got there, I laid in the pre-op room with the excruciating headache for an hour until the surgeon came in and told me she refused to do the surgery because I had vomited and she was afraid that it could happen again during the procedure and be dangerous.
Went back up to my room and the same doctor that told me there were no other options earlier in the day, had approved the new drug the nurse had suggested and they started it immediately. Within an hour or so the headache went away.
Then something happened I would have never expected, my stem cell doctor, the one that screws everything up actually came into my room! He has never come to see me when I was inpatient in the hospital! He sits down and apologizes, first for the scheduling of the catheter placement. Then he explains that he believes the reason I am having so much throat pain so early is because he gave me an injection last week prematurely. He went on to say that he had hoped by giving it to me so early it would work better, but he has since heard arguments from his colleagues to the contrary and now believes that I am in so much pain and having swallowing problems because of that decision he had made. I told him how disappointed I am in all of this and he seemed very remorseful at least.
Sorry for such a long post, but a lot has happened, I will try to post more frequently if I can manage to stay awake and migraine free! Hopefully today will be a better day.
I made it through my first week of radiation last week. It seems like I spent the whole week either waiting to see a doctor or in the treatment room.
Radiation was not what I was expecting. Each treatment was boost radiation and only about 20 minutes. I had radiation to my upper chest and the front and back of my neck. Most of that time was just positioning me correctly. The radiation beams don't hurt, you can't even feel them during treatment. But you certainly do later!
By Wednesday I was really starting to hurt. Started out just feeling achy, like I over did it at the gym (wait, how would I even know what that feels like!?) By Thursday afternoon, breathing and swallowing became painful. Friday I was a mess, even walking became difficult and the only thing I could was water and even that was difficult. This was upsetting because I was told the swallowing problems wouldn't begin until later on in my treatment. Even the radiation docs didn't understand why I was having such severe symptoms so early.
Sunday morning I was admitted to the hospital, and the miscommunication began immediately. My stem cell doctor had told me more than once that my new catheter in my chest would be placed that day, but when I got here, the nurses had no idea what I was talking about. They basically accused me of lying or "hearing him incorrectly". But I promised me it would be done on Monday, right after my radiation.
Sunday night they started me on a continuous iv drip of a drug that has given me migraines, but insisted that I had to have it cause it was the only one they use. By Monday morning I had a severe headache and could hardly open my eyes. The doctors made their "rounds" and I asked again if it could be change, no again.
Right before going down for my second radiation, a nurse came in a suggested a different drug they could use, but it wasn't going to be approved until after I got back from radiation. At this point I felt really horrible, if you have ever had a migraine you know what I mean when I say it effects more then just the head, I was feeling really sick too.
They brought me down for radiation and it took extra long because they need more films apparently, so I was on the metal table with my chin taped up for more than an hour. When they sat me up and put me in the wheelchair I started vomiting. They gave me anti nausea drugs and got it under control and sent me to the OR area to have my catheter placed. When I got there, I laid in the pre-op room with the excruciating headache for an hour until the surgeon came in and told me she refused to do the surgery because I had vomited and she was afraid that it could happen again during the procedure and be dangerous.
Went back up to my room and the same doctor that told me there were no other options earlier in the day, had approved the new drug the nurse had suggested and they started it immediately. Within an hour or so the headache went away.
Then something happened I would have never expected, my stem cell doctor, the one that screws everything up actually came into my room! He has never come to see me when I was inpatient in the hospital! He sits down and apologizes, first for the scheduling of the catheter placement. Then he explains that he believes the reason I am having so much throat pain so early is because he gave me an injection last week prematurely. He went on to say that he had hoped by giving it to me so early it would work better, but he has since heard arguments from his colleagues to the contrary and now believes that I am in so much pain and having swallowing problems because of that decision he had made. I told him how disappointed I am in all of this and he seemed very remorseful at least.
Sorry for such a long post, but a lot has happened, I will try to post more frequently if I can manage to stay awake and migraine free! Hopefully today will be a better day.
Saturday, January 8, 2011
One more important thing...
Despite my sadness, I need everyone to know how much I love all of you. I don't just mean my close friends and family. I love and appreciate everyone who has been reading my blog, sending me positive thoughts, love and prayers. When you are facing something like this you appreciate people so much more then you ever did before. I really wouldn't have made it this far without all of your kind and supportive words. My friends and family have made themselves available to me around the clock to help out in anyway they can and have sacrificed a lot for me. Also, it continues to amaze me how kind total strangers can be. Thank you to all, and I truly love you with all my heart. Even if things don't work out for me in the end, I believe in karma and you all have great things coming your way. <3
January 8th - How to begin?
So I got a little gray envelope from UPS yesterday. It was from Sloan Kettering and I knew what was in it without even opening it, I've seen them many times now. Inside this envelope is a CD of my most recent scan as well as a full written report by the Nuclear Medicine Tech detailing the scan results. Knowing the contents, I decided to not open it right away and put it aside. As I mentioned in my earlier posts, regardless of what the scan shows, the next step would be the same. The likelihood of success would lessen though if there was any cancer showing up on the scan. So part of me just doesn't want to know the results. But I am obsessive-compulsive by nature, and I can't stand not having every bit of info.
So my curiosity got the best of me and I opened the envelope this morning. Those of you who know me realize it's amazing I made it as long as I did without looking.
And of course, once again, major disappointment. The report said, "Blah, blah, blah... still disease present... blah, blah, blah. (Fill in the "Blahs" with medical jargon)
So here I am. Just when I think I couldn't possibly handle anymore bad news, more comes my way.
As it was, I already have been having much anxiety about leaving tomorrow to go down to NYC for who knows how long. I can't even think about voluntarily walking into the transplant unit on the 16th without getting physically ill. I refuse to pack, because packing would be accepting that I am leaving, and I can't do that.
So why am I doing this? Why am I going to allow them to make me suffer so much, when the chance of a cure is so small? Why allow my family and friends watch me go through this? I mean, is it worth putting yourself through so much hell when you don't have much of a chance of succeeding? Is it wise to spend your last dollar on a lottery ticket? No, you take that last dollar and do as much as you can with it, instead of just throwing it away. Maybe that's what I should do with my life.
I think the name of this blog is all wrong. Someone is certainly getting their ass kicked, but it isn't lymphoma's ass apparently.
So my curiosity got the best of me and I opened the envelope this morning. Those of you who know me realize it's amazing I made it as long as I did without looking.
And of course, once again, major disappointment. The report said, "Blah, blah, blah... still disease present... blah, blah, blah. (Fill in the "Blahs" with medical jargon)
So here I am. Just when I think I couldn't possibly handle anymore bad news, more comes my way.
As it was, I already have been having much anxiety about leaving tomorrow to go down to NYC for who knows how long. I can't even think about voluntarily walking into the transplant unit on the 16th without getting physically ill. I refuse to pack, because packing would be accepting that I am leaving, and I can't do that.
So why am I doing this? Why am I going to allow them to make me suffer so much, when the chance of a cure is so small? Why allow my family and friends watch me go through this? I mean, is it worth putting yourself through so much hell when you don't have much of a chance of succeeding? Is it wise to spend your last dollar on a lottery ticket? No, you take that last dollar and do as much as you can with it, instead of just throwing it away. Maybe that's what I should do with my life.
I think the name of this blog is all wrong. Someone is certainly getting their ass kicked, but it isn't lymphoma's ass apparently.
Thursday, December 23, 2010
December 24th - Full Circle (damn you cancer)
Well it's only midnight (stupid insomnia). But the 24th of December last year was when the tumors were initially found. So while I'm really trying to keep the "Holiday Spirit" it is hard, especially knowing not only the past, but all that lays before me.
At my appointment at MSKCC (Memorial Sloan Kettering Cancer Center) this week I felt very overwhelmed. I knew what to expect next, it just made it so much more real on paper.
Okay so here's the synopsis of it. I saw both they radiation oncologist and my stem cell doc. they both agreed that my most recent PET scan looked pretty good from what they could tell. The final results were not to be available until later this week.
What they pressed upon me during my office visit, was not to get hung up on whether the PET scan was completely clean or not. The important thing is that they feel I am good enough to go into transplant. So honestly I've decided that I do not want to know the official results, I have to make it thought the transplant regardless and I might as well have as much hope as possible right?
I will go for a radiation simulation (set up) on Jan. 4th. Then I will begin one week of 2x a day outpatient radiation on Jan 10th. At the end of that week, on the 16th I will be admitted to the hospital for my transplant.
Once I am admitted, I will undergo another week of total body radiation and then 4 days of chemo before my transplant
So here I am, full circle. I really thought I would be cured at this point. But now I am just hoping to survive to see another Christmas.
At my appointment at MSKCC (Memorial Sloan Kettering Cancer Center) this week I felt very overwhelmed. I knew what to expect next, it just made it so much more real on paper.
Okay so here's the synopsis of it. I saw both they radiation oncologist and my stem cell doc. they both agreed that my most recent PET scan looked pretty good from what they could tell. The final results were not to be available until later this week.
What they pressed upon me during my office visit, was not to get hung up on whether the PET scan was completely clean or not. The important thing is that they feel I am good enough to go into transplant. So honestly I've decided that I do not want to know the official results, I have to make it thought the transplant regardless and I might as well have as much hope as possible right?
I will go for a radiation simulation (set up) on Jan. 4th. Then I will begin one week of 2x a day outpatient radiation on Jan 10th. At the end of that week, on the 16th I will be admitted to the hospital for my transplant.
Once I am admitted, I will undergo another week of total body radiation and then 4 days of chemo before my transplant
So here I am, full circle. I really thought I would be cured at this point. But now I am just hoping to survive to see another Christmas.
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