I can't believe it is already Wednesday. The week has been flying by for me, probably because I am dreading/looking forward to Monday. Sunday probably will drag.
It is amazing over the last few days the emotional roller coaster ride I have been on, all a part of dealing with some of the possible out comes or collateral damage that may occur.
I am not happy about any of the possible collateral damage that may happen, but I think I have come to a point that as long as I can function normally (what passes for normal for me) I can handle it. To be honest I really wouldn't have a choice so may as well come to terms with it.
Yeah, I am still a bit frightened, but I am OK with it. I mean even though I went through so many surgeries back in 2003, they didn't open me up and mess with my internal organs, or break ribs or open the sternum. To me it is a little disconcerting to think that they are really going to be messing with an organ that is behind my rib cage, still gives me a bit of trepidation. Since I can't change that I have to accept it and have faith.
Not much of a post, but a note that the mental distress is dissipating. Let's hope I stay this calm as they wheel me into the operating room, and hope the rest of the week flies by so I can get this over and done with.
Wednesday, May 18, 2011
Friday, May 13, 2011
To Lose a Lung or Not to Lose a Lung, There is NO Option
Seriously, there isn't. I got a surgery date yesterday from the Thoracic Surgeon. May 23. I have to be at the hospital at 9:30, surgery is at 11:30 AM. It is supposed to take about three hours.
First when my daughter Jasmine and I were sitting in his office he asks if they told me about the CAT scan results. My reply was not for the lung. He says, the tumor in the lung did not respond to the chemo. My reply, Huh, I guess they decided to let you deliver that bad news. His reply, it is a BIG tumor.
Yes, I am looking forward to it, and yet I'm not, at least for the moment.
Why am I not looking forward to it? Let's just say I wish the doctor would have gone over some of the potential downsides when I first talked to him back in February, I think it was February.
He told me how they would go in, starting the incision on my back, right side, under the arm and ending up on the side/front, under the breast tissue. Well now there is a possibility that if they start that approach it won't work and they will have to go in from the front of the chest. Either way a rib will be broken and ribs spread so they can get access to the lung.
They will start with the cut on the back approach first, but if that doesn't work, I'll end up with two lovely scars.
So what other things are there a potential of? Let's see. Damage to the voice. Great, I work at BaseTel, I talk on the phone, let's just fuck up my job.
Damage to the nerve that affects the diaphragm, which may make it more difficult to breath. Oh, if it is too difficult they can do another surgery! They go in and tighten up the diaphragm. In seventh grade I had a Home Economics (Cooking) teacher that had problems with talking and breathing, assuming she had problems with her lung, she'd say a few words then a deep breath, say a few more, again a deep breath. I like being able to talk the way I do. Let's hope it stays that way.
Possible damage to the Vena Cava (spelled wrong most likely) main artery from the heart. There is a possibility it may be damaged and have to be rebuilt. Rebuilt is not a good thing in my book. Opens a whole can of other worms.
More susceptible to pneumonia. Yeah great, I work where the guys HAVE to show up sick.
There are several more, but by the time he got to them all I was hearing was blah blah blah. All I could think was how could you not tell me this stuff way back when to give me time to digest it all. Ten days away from surgery and you tell me? WTF? Don't you think it takes time for a person to deal and digest all that?
Then I had to sign a paper that listed the procedure name, and the possible other damages and he said one of my options was to do nothing. Since when was doing nothing an option for me? I don't have that option. First off, um it is cancer, it WILL kill me, second they will not do the abdominal surgery until the lung surgery is done because of where in the lung the tumor is and it is leaning against the heart. So please tell me when was not doing a surgery that can really fuck me up not an option? Seriously when?
In 2003 when I went through cancer I had 12 or 13 surgeries, was resuscitated on the OR table, had the hamstring on the left leg removed, had the right latisimus muscle moved from my back to my leg to protect the bone and nerves, other than that it doesn't work as a muscle. Several skin grafts because they kept failing. None of that bothered me or even scared me.
Life finally has handed me something that frightened me. They are going to open up my body and mess with internal organs. They are literally going to have a machine breath for me while they dice my lung. I am going to be put further in debt because it too to add insult to injury. Yeah I am frightened and I think I have every right to be.
I just wish the dumb shit would have told me this stuff way back when; I'd be in a better space in my head if he did.
First when my daughter Jasmine and I were sitting in his office he asks if they told me about the CAT scan results. My reply was not for the lung. He says, the tumor in the lung did not respond to the chemo. My reply, Huh, I guess they decided to let you deliver that bad news. His reply, it is a BIG tumor.
Yes, I am looking forward to it, and yet I'm not, at least for the moment.
Why am I not looking forward to it? Let's just say I wish the doctor would have gone over some of the potential downsides when I first talked to him back in February, I think it was February.
He told me how they would go in, starting the incision on my back, right side, under the arm and ending up on the side/front, under the breast tissue. Well now there is a possibility that if they start that approach it won't work and they will have to go in from the front of the chest. Either way a rib will be broken and ribs spread so they can get access to the lung.
They will start with the cut on the back approach first, but if that doesn't work, I'll end up with two lovely scars.
So what other things are there a potential of? Let's see. Damage to the voice. Great, I work at BaseTel, I talk on the phone, let's just fuck up my job.
Damage to the nerve that affects the diaphragm, which may make it more difficult to breath. Oh, if it is too difficult they can do another surgery! They go in and tighten up the diaphragm. In seventh grade I had a Home Economics (Cooking) teacher that had problems with talking and breathing, assuming she had problems with her lung, she'd say a few words then a deep breath, say a few more, again a deep breath. I like being able to talk the way I do. Let's hope it stays that way.
Possible damage to the Vena Cava (spelled wrong most likely) main artery from the heart. There is a possibility it may be damaged and have to be rebuilt. Rebuilt is not a good thing in my book. Opens a whole can of other worms.
More susceptible to pneumonia. Yeah great, I work where the guys HAVE to show up sick.
There are several more, but by the time he got to them all I was hearing was blah blah blah. All I could think was how could you not tell me this stuff way back when to give me time to digest it all. Ten days away from surgery and you tell me? WTF? Don't you think it takes time for a person to deal and digest all that?
Then I had to sign a paper that listed the procedure name, and the possible other damages and he said one of my options was to do nothing. Since when was doing nothing an option for me? I don't have that option. First off, um it is cancer, it WILL kill me, second they will not do the abdominal surgery until the lung surgery is done because of where in the lung the tumor is and it is leaning against the heart. So please tell me when was not doing a surgery that can really fuck me up not an option? Seriously when?
In 2003 when I went through cancer I had 12 or 13 surgeries, was resuscitated on the OR table, had the hamstring on the left leg removed, had the right latisimus muscle moved from my back to my leg to protect the bone and nerves, other than that it doesn't work as a muscle. Several skin grafts because they kept failing. None of that bothered me or even scared me.
Life finally has handed me something that frightened me. They are going to open up my body and mess with internal organs. They are literally going to have a machine breath for me while they dice my lung. I am going to be put further in debt because it too to add insult to injury. Yeah I am frightened and I think I have every right to be.
I just wish the dumb shit would have told me this stuff way back when; I'd be in a better space in my head if he did.
Friday, May 6, 2011
Got Some Cheese to go with a Whine?
Nope, not in the hospital, quiet opposite, out and on short term disability, and losing my mind.
The last two days have been a bit rough, along with a day a couple weeks ago, not physically but emotionally.
To understand you have to back up to the last time I was in the hospital, I went in on April 7th, and got out on April 13th, one day short of a week. I was in bad shape when I went in, I mean bad shape.
My system basically crashed. I wasn’t producing white cells, platelets; I think there was a problem with the red ones too. Not to mention the potassium levels were really super low. (Potassium is needed to regulate the heart.) And they discovered an, crap what do they call it, it isn’t inception, something like interception I think, and it is spelled wrong, basically it is when the intestine decides to fold in on itself like a water balloon. Not a good thing, is painful and if it blocks can cause problems with the intestine, like if the blood flow is cut off from being blocked, it can kill the small intestine. The surgeon made sure he explained that to me, but they couldn’t do surgery because of my blood levels. (No they didn’t do surgery I still am walking around with it and feeling every bit of food pass through, not fun let me tell you.)
Well, while I was in the hospital I was scheduled for radiation, and normally they would have had a medical transport pick me up and take me to my radiation appointment, but since my blood levels were so bad, they couldn’t risk the radiation making it worse or me being out amongst the “normal” population.
I was in the “step down unit”, isolation room. Step down from ICU. When patients are released from ICU they go to the step down unit before they go to a regular room. (Nope never made it to a regular room.)
Fast forward to April 18th, still feel pretty rough, but I am out of the hospital and have an appointment with my oncologist to have blood work done and I get to ask about this intestine thing.
Blood levels are going up, not normal yet but getting there. I talk with my doctor and when I left I was under the impression that I wouldn’t have to finish radiation and since the intestine thing was present that put the abdominal surgery first, and soon.
Well I was wrong. I had to finish radiation, another six days of it. I know you are thinking that six days isn’t much. But you have to understand that radiation continues to work for 10 days after you are done, plus they allow time to let your body normalize so you heal better. Radiation interferes with healing. So rather than within two weeks getting surgery having the tumor taken out of my abdomen and having my intestine fixed so it doesn’t hurt when every little think passes through, I am looking at four minimum.
I was depressed the day they gave me that news.
Fast forward to yesterday. I had my appointment with the oncology surgeon. The doctor who is going to be taking the tumor out of my abdomen and fixing the intestine. I was really hoping to hear that they were going to do surgery within a week because of the intestine thing. But no. He isn’t worried about it as long as things are passing through, painful as it may be. He is more worried about if he goes in before they address the tumor in my lung which is pressing against the heart, and is wrapped around the main artery that comes from the heart into the lung.
If they go after the abdomen first and something happens, the tumor in the lung pressing against the heart can interfere with my life being saved. Ok I can understand that, but I am still disappointed.
Now I have to wait till next week and talk to the Thoracic Surgeon who hopefully will give me a date for surgery that isn’t two or three weeks out.
It boils down to this, I am tired of not being normal for me, tell me I’ll go through pain but when it is over my life will be my life again, and I’ll do it. I am tired.
I am tired of feeling run down, not wanting to eat because it will ultimately cause pain and interrupt my sleep, I am tired of not getting a full night sleep, and I am tired of food tasting like yuck. I can’t taste salty and I can barely taste sweet.
Fritos are really salty, so are Doritos, and Cheetos. I don’t taste a bit of salt when I eat them. I barely got a grape sweet taste from grape jelly. I just want to be able to taste food and have it be normal.
From my point of view things are going nowhere fast; I don’t see the end of the journey. All I know is I am tired and I want to see things progress.
Yes I know they are, but at times it seems that all I do is wait for something. Wait for the chemo to take effect or put me in the hospital. Wait for the radiation. Get put into the hospital, get out of the hospital. With all of that going on, I feel like I am stuck in neutral. Still got those tumors. The one in the abdomen shrunk, but I still have it. I feel like if things were going somewhere I’d be at least recovering from a surgery by now. Frustrating is what it is.
Frustrated is what I am. Mainly because I feel like I am standing still while everything passes me by.
I’m done whining. It doesn’t do any good. Hopefully soon I'll be posting some nasty pics of the tumors.
Sunday, April 17, 2011
Back in the hospital, staging and stuff
Well, it is official, well it has been, and I think I mentioned it before but I don’t reread past posts, call me lazy. I am Stage IV, thought I give a little over all explanation, or Wiki could.
There is more to the explanation, but it is a simple explanation and most can understand it. Overall it gives a brief explanation of stage grouping.
Overall Stage Grouping is also referred to as Roman Numeral Staging. This system uses numerals I, II, III, and IV (plus the 0) to describe the progression of cancer.
Stage 0 carcinoma in situ.
Stage I cancers are localized to one part of the body.
Stage II cancers are locally advanced.
Stage III cancers are also locally advanced. Whether a cancer is designated as Stage II or Stage III can depend on the specific type of cancer; for example, in Hodgkin's disease, Stage II indicates affected lymph nodes on only one side of the diaphragm, whereas Stage III indicates affected lymph nodes above and below the diaphragm. The specific criteria for Stages II and III therefore differ according to diagnosis.
Stage IV cancers have often metastasized, or spread to other organs or throughout the body.
So you see just because they say Stage IV doesn’t mean you can’t beat it. Stage IV means you have a bigger fight ahead of yourself.
And yes, I am back in the hospital again. This time for dehydration (hydration is very important for those who are healthy and those who aren’t) nausea is a bugger but it was back, and of course you know those red and whites counts went into the thank, they are still having a hard time finding the white cells.
Oh yeah the potassium is something not to take for granted either, it helps regulates you heartbeat I think, anyway it was low enough for me to end up on the second floor of Mary Washington. The area I am in is the step down unit of the ICU. Let me tell you their treatment is just as stellar and the Nurses on Four.
While I have been in here I received a Platlet transfusuion, went OK for up till it was almost over, then I got hit with a side affect, I started to feel like I was freezing, shaking, could only breath out of my mouth, literally pulled the cover over my head teeth chattering, bone cold, couldn’t get warm.
The nurses were there on the spot, got the drugs on line to help me fight the side effects, and got me warm, trust me I made the night exciting for them, the good think about the experience is that the heart stayed in sinus rhythm. That would have added more excitement. More excitement I can do without.
Oh and Riley wants you to vote for her picture she says she use the $500 for me to help with cleaning up the carpets and stuff I need (Riley is Jasmine’s dog). Here is a link to her facebook post.
Saturday, April 9, 2011
A Third Post - Yep in the Hospital, AGAIN
Oh my God, Hell just froze over right? I mean a third post in a week? No hell hasn’t frozen, I am just back in the hospital, again, second time for the week, hmm, and does that sound like my first week of chemo? (This time I only scared my daughter, Sorry Jasmine. Well, I hope I only scared one person to death this time.)
Chemo effects suck, especially the ones that involve brain function, I mean do you understand how awful it is to know that you know something, and have to force a complete sentence? Or worst yet, know you know but have to say I don’t understand because you don’t know how to make the knowledge get past that block in your head? Or really honestly have to answer I don’t know because you can’t remember?
I have a new appreciation for what Altiemerzers patients go through, my heart breaks for them.
So since I am on day four of cycle three, they don’t want to skip my original schedule (I was only going to get a four day cycle instead of a five day cycle because of the hospital stint Monday) but since I am in the hospital, I get the full five days, they want to be as aggressive as possible since surgery is in the near future to give best margins.
Since I am in the hospital, I will be getting the full five day cycle, stuck in the hospital until Sunday. One extra day to watch for the “crazies” after effects. Sucks.
Eh, maybe they will have some super fixer upper kitchen gadget does all on tv for sale. You think I would know better than end up here again.
Thursday, April 7, 2011
Am I nuts? (No comments from the Peanut Gallery)
Seriously, am I? I am looking forward to having surgery. Major surgery.
I know in 2003 I went through 13 total surgeries with the tumor in the leg, and the skin grafts, but that wasn't cutting into the insides of me.
The innards, the soft stuff, the important stuff, where the heart, lungs, kidneys, stomach, intestines reside. To me that is major stuff.
Think about it, the first surgery will be the lung. I have no idea if I will wake up with any portion of my right lung left. And to access the lung because the size of the tumor (big as my fist) they cannot do the micro surgery, and yest the size of the tumor puts me in the category of Stage 3.
To access the lung, I will be laying on my left side, the surgeon will make the cut starting at my back just beyond under my arm, the incision will go across my ribs, he will break one of my ribs, and insert a spreader to access the lung, from there he will determine what happens. He thinks I will probably loose at least the upper lobe.
That isn't the half of it, lol! The tumor is wrapped around a main vein that feeds from the heart, the vein that pumps blood out into the system.
How does this come into play? Well if I am lucky the tumor will just be growing around the vein and not have the vein involved, (I have no idea what the name of the vein is, so If you know, please feel free to tell me) Any way if it is not involved the tumor will just peel off. Well if not, and it is involved, yeah, things are a litter less bright, they will debulk it and I will have to get radiation on that area, which I am not thrilled about, they will be cooking part of one of the girls I fear (yes, I am speaking of the twins, the tatas, the breasts, the titties). Not something I really want to do. And I will continue with chemo, again another aspect I don't want to go through.
More chemo, I think I have had quiet enough, thank you very much. I think I understand why I am looking forward to surgery, one it will answer what is going on in the lung and let me know what I have laying ahead, two I won't feel like nothing is happening, even though I know chemo and radiation are crucial in the treatment, three I am tired of feeling like crap, and angry. Angry things are progressing faster, I am losing patience with my self, well at least at this moment I am, give me a bit and I'll be back to the balance of acceptance and the progress, but for now I just want to get this going and it isn't going fast enough.
So there is a whine to go with your day. Yep, I am sitting in chemo again today.
I know in 2003 I went through 13 total surgeries with the tumor in the leg, and the skin grafts, but that wasn't cutting into the insides of me.
The innards, the soft stuff, the important stuff, where the heart, lungs, kidneys, stomach, intestines reside. To me that is major stuff.
Think about it, the first surgery will be the lung. I have no idea if I will wake up with any portion of my right lung left. And to access the lung because the size of the tumor (big as my fist) they cannot do the micro surgery, and yest the size of the tumor puts me in the category of Stage 3.
To access the lung, I will be laying on my left side, the surgeon will make the cut starting at my back just beyond under my arm, the incision will go across my ribs, he will break one of my ribs, and insert a spreader to access the lung, from there he will determine what happens. He thinks I will probably loose at least the upper lobe.
That isn't the half of it, lol! The tumor is wrapped around a main vein that feeds from the heart, the vein that pumps blood out into the system.
How does this come into play? Well if I am lucky the tumor will just be growing around the vein and not have the vein involved, (I have no idea what the name of the vein is, so If you know, please feel free to tell me) Any way if it is not involved the tumor will just peel off. Well if not, and it is involved, yeah, things are a litter less bright, they will debulk it and I will have to get radiation on that area, which I am not thrilled about, they will be cooking part of one of the girls I fear (yes, I am speaking of the twins, the tatas, the breasts, the titties). Not something I really want to do. And I will continue with chemo, again another aspect I don't want to go through.
More chemo, I think I have had quiet enough, thank you very much. I think I understand why I am looking forward to surgery, one it will answer what is going on in the lung and let me know what I have laying ahead, two I won't feel like nothing is happening, even though I know chemo and radiation are crucial in the treatment, three I am tired of feeling like crap, and angry. Angry things are progressing faster, I am losing patience with my self, well at least at this moment I am, give me a bit and I'll be back to the balance of acceptance and the progress, but for now I just want to get this going and it isn't going fast enough.
So there is a whine to go with your day. Yep, I am sitting in chemo again today.
Wednesday, April 6, 2011
Round Three, The Adventures continue, well I call it an Adventure
Did I tell you guys what happened at the end of round two? No I am being lazy so I am just going to tell you again if I told you, oh and I am doing chemo now so if it is gibberish, blame it on chemo brain, I feel so nauseated, this is a long day of chemo too.
Ok, it is round two and I made it to Thursday without going to the Emergency Room, Thursday night, all I have to do is get through Friday, wrong! Sitting hooked up to my fluids and mesna, something gets the dogs going, and low and behold one of the paws catched the line and rips the access needle to my port out.
Me I figure no big deal, the mesna was the second dose and I am almost done with it, I can wait to morning to get re accessed. Jim says call the doctor, which I reluctantly do (by the way, Jim is my son) Guess what? I have to go to the ER to have my port re accessed and flushed. So much for the week with out going to the ER.
Third cycle I'll make it through right? Wrong, first day of Cycle Three I ended up in the hospital. I just can't stay away from that place. What happen you ask? Well pull up a chair my little one and I will explain.
First day of any cycle they draw blood to test levels, well you are suppose to be able to draw blood from my port, and they couldn't. Fluid would flow in, but the port wouldn't allow the draw of blood. OK, lean back, no draw, raise your arms and wave, no luck, lay flat, turn your head to the left, raise your arms, cough hard, no luck.
Time for the Liquid Plumber for humans. It is common for a fiber to form on the tip of the port that wouldn't allow for draw, a flap so to speak. Half hour later, no luck, wait another 30, no luck, a total of two hours, no luck, time to go to the hospital get admitted so they can insert a dye and see what is going on with the port.
Turns out that the tumor in the lung is starting to let itself be known, it is pushing on the area that the port is in and narrowing the area. So it was determined that the port can be used to infuse this week, but needs replaced. Replacement will happen when I go for my first surgery.
Speaking of surgeries, if I am lucky (yes I said lucky) I will get surgery after the radiation. Never thought I'd be saying having a surgeon have to break a rib and spread my ribs make me lucky.
Speak of radiation, I go to the Cancer Centers of Virginia, and they set the bar for care for radiation patients. The entire staff is so pleasant, and always attentive. Very aware of time, and if they are late, (happened only one time) they are very apologetic.
That is another thing I find interesting, is how aware all my care givers are both radiation and chemo. When they access my port they apologise for the pinch of the needle, when they draw blood not using the port they apologise, even in the ER and hospital. They are so attuned to the cancer patient and discomforts.
I tell them don't apologise, I should thank them every time I get poked, they are doing something that will help me get healthy and prolong my life, they are working to help me defeat cancer, a killer. No need to apologise to me.
Other than my own body's ability to get me in the hospital, I cannot say one thing, oh I lied I hate waiting in the doctor's office, and the ER, but other than that I cannot complain one bit about my treatment here in Virginia.
Actually, I am happy I did move to Virginia, it helped change my view point of things, and I am glad I got cancer here to, it showed me that there are people I can depended on that warmed my heart and gives me hope for the human race.
My family, my friends, the people I work with, the prayers and most people who don't know me praying, the people who have decided to help by purchasing bracelets from Carol, my big sister.
It is all a very humbling experience, one I am grateful for. For your prayers, support, help, I thank you all.
Ok, it is round two and I made it to Thursday without going to the Emergency Room, Thursday night, all I have to do is get through Friday, wrong! Sitting hooked up to my fluids and mesna, something gets the dogs going, and low and behold one of the paws catched the line and rips the access needle to my port out.
Me I figure no big deal, the mesna was the second dose and I am almost done with it, I can wait to morning to get re accessed. Jim says call the doctor, which I reluctantly do (by the way, Jim is my son) Guess what? I have to go to the ER to have my port re accessed and flushed. So much for the week with out going to the ER.
Third cycle I'll make it through right? Wrong, first day of Cycle Three I ended up in the hospital. I just can't stay away from that place. What happen you ask? Well pull up a chair my little one and I will explain.
First day of any cycle they draw blood to test levels, well you are suppose to be able to draw blood from my port, and they couldn't. Fluid would flow in, but the port wouldn't allow the draw of blood. OK, lean back, no draw, raise your arms and wave, no luck, lay flat, turn your head to the left, raise your arms, cough hard, no luck.
Time for the Liquid Plumber for humans. It is common for a fiber to form on the tip of the port that wouldn't allow for draw, a flap so to speak. Half hour later, no luck, wait another 30, no luck, a total of two hours, no luck, time to go to the hospital get admitted so they can insert a dye and see what is going on with the port.
Turns out that the tumor in the lung is starting to let itself be known, it is pushing on the area that the port is in and narrowing the area. So it was determined that the port can be used to infuse this week, but needs replaced. Replacement will happen when I go for my first surgery.
Speaking of surgeries, if I am lucky (yes I said lucky) I will get surgery after the radiation. Never thought I'd be saying having a surgeon have to break a rib and spread my ribs make me lucky.
Speak of radiation, I go to the Cancer Centers of Virginia, and they set the bar for care for radiation patients. The entire staff is so pleasant, and always attentive. Very aware of time, and if they are late, (happened only one time) they are very apologetic.
That is another thing I find interesting, is how aware all my care givers are both radiation and chemo. When they access my port they apologise for the pinch of the needle, when they draw blood not using the port they apologise, even in the ER and hospital. They are so attuned to the cancer patient and discomforts.
I tell them don't apologise, I should thank them every time I get poked, they are doing something that will help me get healthy and prolong my life, they are working to help me defeat cancer, a killer. No need to apologise to me.
Other than my own body's ability to get me in the hospital, I cannot say one thing, oh I lied I hate waiting in the doctor's office, and the ER, but other than that I cannot complain one bit about my treatment here in Virginia.
Actually, I am happy I did move to Virginia, it helped change my view point of things, and I am glad I got cancer here to, it showed me that there are people I can depended on that warmed my heart and gives me hope for the human race.
My family, my friends, the people I work with, the prayers and most people who don't know me praying, the people who have decided to help by purchasing bracelets from Carol, my big sister.
It is all a very humbling experience, one I am grateful for. For your prayers, support, help, I thank you all.
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