This will be my last entry in this blog.
I have been told that I am now terminal with my cancer, and I've been writing so much on Facebook, that I don't have the energy for both a blog and it.
I still believe that life is good. I believe that this blog may help someone who is just getting started with their gastric bypass surgery. It was worth it to me and will always be that way.
God bless all who come here. I hope the trip was worth it.
September 1, 2012
August 5, 2012
The bucket list!
1. I want to go to Disney World and take my time and really see it all.
I've never been there, and it has been a dream of mine since I first saw "the Wonderful World of Disney" on TV when I was a kid. Disney World, not Disney Land, since they built it has been the one thing I've wanted to do.
2. I want to take a Corvette for a drive.
I'm not a lead foot, but I've also never gotten a chance to set my butt into a drive's seat of a 'Vette. All I want to do is to take one for a drive for a few miles to see what I've missed all these years. No big deal. Even if it's for 10 minutes. I don't care what year I drive, or the model. But, it has to be a 'Vette.
3. I want to use Las Vegas as a base for a few weeks and go see the sights around it as well as taking my time to see some of the sights inside Vegas. I don't gamble, so this would be a good look-see type of trip. I was there for my daughter's wedding and was amazed with everything I saw, even in the short time we were there. The Grand Canyon.
4. I want to go see The Bahai Temple in Chicago, Ill. Just once.
5. I want to see Australia, and New Zealand. If they weren't backwards in time down there, I might just want to live there. They look so beautiful in all the pictures I've seen.
6. I want to see Israel.
7. I want to see California.
8. I want to eat a lobster dinner in Portland, Maine. With all the fixins!
9.
This is my short list. There really isn't anything much else that I want to do just yet. I'm still thinking about it. The time of thrill rides has passed me by. I would probably fall apart with as much that has been chopped, sliced, and diced out of me, so I'll be content to watch that stuff on TV.
I may add to this later.
I've never been there, and it has been a dream of mine since I first saw "the Wonderful World of Disney" on TV when I was a kid. Disney World, not Disney Land, since they built it has been the one thing I've wanted to do.
2. I want to take a Corvette for a drive.
I'm not a lead foot, but I've also never gotten a chance to set my butt into a drive's seat of a 'Vette. All I want to do is to take one for a drive for a few miles to see what I've missed all these years. No big deal. Even if it's for 10 minutes. I don't care what year I drive, or the model. But, it has to be a 'Vette.
3. I want to use Las Vegas as a base for a few weeks and go see the sights around it as well as taking my time to see some of the sights inside Vegas. I don't gamble, so this would be a good look-see type of trip. I was there for my daughter's wedding and was amazed with everything I saw, even in the short time we were there. The Grand Canyon.
4. I want to go see The Bahai Temple in Chicago, Ill. Just once.
5. I want to see Australia, and New Zealand. If they weren't backwards in time down there, I might just want to live there. They look so beautiful in all the pictures I've seen.
6. I want to see Israel.
7. I want to see California.
8. I want to eat a lobster dinner in Portland, Maine. With all the fixins!
9.
This is my short list. There really isn't anything much else that I want to do just yet. I'm still thinking about it. The time of thrill rides has passed me by. I would probably fall apart with as much that has been chopped, sliced, and diced out of me, so I'll be content to watch that stuff on TV.
I may add to this later.
June 22, 2012
Sitting still
Today would have been our 36th anniversary. I miss my wife. She died in 2010.
I am waiting for permission to put a beautiful painting on this entry. It is a piece that I have fallen in love with.
There are two pieces that are titled I and II called "Kinetic Color". They are acrylic on canvas. I saw Kinetic Color I in person and pause by it every time I go past it. The other, I received digitally by email from the artist. BTW, the painting here, is the second one, and for some reason it came up on it's side. In order to see what I did, you will have to turn it 90 degrees with the blue colors towards the bottom.
The reason these two pieces are important to me is because I've never been able to look at artwork before. In all my years, I was never able to stand or sit still long enough to really look at it because of my ADD.
Now, I have been forced to hold still for longer periods than ever before. This is one of the geed things that has come out of my Pancreatic cancer.
I am enjoying looking at painting now because I can really stop to see them. Before, if they weren't moving, I had no interest.
I like the abstract stuff because they allow me to let my mind wander a bit and see things that aren't really there. My imagination goes wild.
Next week, I will drop off the grid for about 5 weeks. I don't think the place I'm going has internet access. The lady told me she doesn't even have a cell phone. So, I think I will carry my native American flute and guitar with me and maybe try to play while not having anything else to do.
I am going for my radiation therapy treatment for 28 days or so next week, and this fantastic organization made arrangements for me to stay with this family so I don't have to commute 70 miles each way back and forth. The treatment is 5 days a week with the weekends off. That would add up to a lot of gas, wear and tear on both me and the car. This home is only a few miles from the hospital, so it should be much easier.
I will have my own room with AC, and bathroom. I will try to come home on the weekends to rest and clean my laundry. Staying there will be tough, but it will also be much better than the long drive every day.
After this treatment is over, I will continue the clinical trial treatment and may have one or two chemo sessions left, but should be able to recover and go back to work in a few months. I have other plans also, but who knows what will happen?
June 3, 2012
No editing, sorry!
I've been having trouble with my energy level recently, probably because of the chemo that started last Wednesday. They warned me of many side effects that could happen, and fatigue is the only one that has really hit me. I am so thankful that none of the others have happened.
I am not worried about things like hair loss, except that it's a pain to have to clean hair off the bathroom floor. Most of my hair loss is normal anyway. I'm not having that with the chemo so far.
I got a haircut last week that brought the hair on my head and face down to 5 o'clock shadow level just in case.
So, what else is happening?
Well, I am back to experimenting with food combinations, and doing some minor cooking.
I keep thinking I'd like to go to the market and buy fresh veggies that I can cut up, cook, and add to my concoctions, but I know that without help here at home from someone else, I will probably let the stuff go bad before I get the energy to do the cooking. I also realized that I don't have much room in my freezer for storage. I did up a basic chili last week, and almost didn't have room for the quart sized containers I use. I had to do some real maneuvering to make it all fit.
I also don't eat as much as I did a year ago. I am eating much more like a genuine gastric patient. Much smaller amounts than when my wife was sick and I was over-eating. My pouch has shrunk back to my original size. I get full quickly.
I am also having trouble because of my disease. I have to eat smaller portions more times per day than before. I think I eat about 5 to 6 times a day, with several snacks in between. I really like Hamonds hard pretzels. They help to settle my stomach and fill me up.
I started eating protein bars again. I also have Pure protein liquid drinks, and powder for mixing, although I haven't used it much yet.
My taste buds have once again changed. I crave sweet things, but can't have the sugar I want. I eat some fruit, but it gives me a border line dumping feeling. So many of the frozen meals today have sugar in them, and I have to watch what I buy. They can push me right over the edge.
I haven't really had dumping syndrome until I got sick from this cancer, and it's no fun at all. With all the other problems associated with pancreatic cancer and it's treatment, I spend a lot of time in discomfort if not pain.
So, with all of this, where am I?
From a bariatric viewpoint, I am doing much better than I would have if I hadn't had cancer. Look at the numbers, before and now:
- My waist was 54" when I started. Now, I am 36" and getting thinner. I went all the way down to 42 waist on my own without the cancer.
- My weight went from 305 to 185. I set my official goal at 155, which is what I weighed when I got married in 1976. I will probably lose a lot more weight, so there is a good chance that I will reach that goal. My doctor was happy with me being balanced at around 200. I'm not sure I want to go down to 155.
- My feet have shrunk. They got thinner. You don't think about things like that when you start out on the journey to lose weight. I used to use wide shoes. Now, I am a thin normal width. So far, this is not a problem. I do have shoes that were too narrow for me years ago, and now fit quite nicely.
Unfortunately, I've lost a lot of muscle with the weight loss. The problem is, I was too sick to do anything about it. I ended up fasting almost completely for about two weeks at one point, and I was suffering from Mal-absorption and still am if I don't find a decent enzyme med that I can tolerate, so add that to the list of problems.
I don't remember a time I didn't feel sick. I'm sure I've said this before, and I will again. It's tough to know what I am supposed to feel like when I am "normal". I don't know how long I've actually been feeling the affects of this disease. Much of the time, I just figured I was just getting older. I also gave up on my weight loss goals because of my wife's illness and death. So, when I tried to start over after she died, I was already being affected by the cancer and didn't know it.
So what do I have to look forward to?
- I have at least another 6 to 8 months of treatment and recovery time. Chemo, followed by Radiation, a one month recovery. Then, more chemo. During all this time, I will also be going through the clinical trial vaccine.
- I will run out of health insurance in a few months. I have already applied for Social security/disability, and hope to finish up my welfare application this week. I don't want to collect either, but my hand is forced. I can't safely go back to bus driving, and any job I would take now would require my boss to be very patient and understanding. I get sick and can't make it to work, and that isn't a good thing.
- I will run out of my own money by the end of the year. I dipped into my retirement money and that will disappear. I have never understood money. The powerful people know way more than me, and they have succeeded in taking most of what I wanted to save, and given it to the freeloaders over the years. So, I might be out on the street after I recover, or who knows?
I am working towards the future, so don't think I've given up. I hope to live to a ripe old age, and if I'm allowed, I will become self sufficient again. Anything I get from welfare will be a hand up, not a hand out.
May 24, 2012
Food again, and part 4
In an effort to try to keep organized, and if anyone is reading the blog, I added "part 4" to the title.
My ongoing disease has taken charge of my life and thrown my bariatrics into the background. It is still there, and will always be, but you can rest assured that if you have had the surgery, there will come a time for you when you will not think about food and what you can eat forever. It will start to come naturally.
I still have to remember that I am a gastric bypass patient and it comes up quite often at the hospital. Many of the doctors don't really know details of the procedure, or the various things I must do to insure they don't injure me because of their ignorance.
I spent an hour with a clinical dietician yesterday. Her specialty is in dealing with Pancreatic cancer, and cancer in general. She was brilliant! She asked me lots of questions and listened to and wrote down my answers, until she had a really clear idea of my dilemma. She was very knowledgeable on the subject of bariatrics since their practice also does them. I felt comfortable.
- Cancer eats more than normal cells. This is why people lose weight when they get cancer. It isn't for any other reason.
- My particular problem is mal-absorption. My body isn't digesting and extracting the nutrients in the food. This is because I had part of my pancreas removed. It either hasn't had time to recover and start working again, or it may never recover enough. We don't know because it is too soon after the surgery to tell. Top this off with the cancer eating more than regular cells, and I have been losing weight. Way too much weight. I am losing muscle as well as fat.
So, my treatment is to increase my caloric intake. Not just that, but to increase the quality of the increased intake. She told me that I will need to eat around 2000 calories a day. That sounds like heaven to a gastric bypass patient, but it is going to be a real chore. We decided to try to use protein drinks, milk and protein bars to accomplish the goal. I haven't added milk to my diet for a long time, but I did drink protein drinks and eat the bars before I got sick. I stopped because they no longer tasted good. I hated that because everything I ate had to have chocolate in it, and chocolate stopped tasting good to me. I know, it's horrible to think about not having chocolate in my diet.
My other dietary habits were still sticking pretty close to the bariatric lifestyle, so I am OK there. I have splurged a bit and didn't always eat protein with each meal, but now, I will try to go back to that.
Next, I've had my second clinical treatment (yesterday). It hurt just as much as the first one. Now, I have 4 dots on each arm and thigh. I went to bed last night feeling a bit of flu like symptoms, but that is normal for this treatment. If it works, I will be cured because my immune system will fight and kill any cancer that is left. Taking the enzymes to improve absorption of the nutrients in my food, and the clinical trial, along with radiation and chemo should either kill me, or make me stronger.
I start chemo next week which will consist of two different drugs. One will be given to me next week, and the other along with my radiation therapy. I was told that I probably won't notice too many side effects with the chemo, but I will with radiation therapy because they can't isolate the pancreas from the intestines and abdomen.
The enzymes have caused me a lot of trouble, and they reduced the dosage in order to either build it up slowly, or to find me another type that will cause fewer side effects. So far, after one dose of the new stuff, I am OK.
I may look a bit different, but I feel OK....really!
May 14, 2012
Part three
There are good days now and bad days. The problem for me is that I am existing on about 40% of the energy level of what I was before, so both good and bad require me to waste so many hours. I spend many hours just sitting, waiting for some horrible pain and discomfort to go away so I can get something done.
I think a lot, and I am at peace. I have made practical plans for my upcoming death, although I hope to not have to use those plans for quite a long time. But, I don't really want to suffer and be totally useless while I am still alive. I would rather be productive.
There are so many things I would like to do, but for whatever reason have never done. I guess you could call it a "bucket list".
So where am I right now?
Well, every time I make progress, there seems to be a setback. The current event is that they have decided to delay treatment until they determine if the spot that they found on my liver is cancerous. They haven't told me what they will do if it is cancerous, but I can imagine that this will affect my clinical treatment. Let me tell you the 3 types of treatment they chose for me:
- Radiation therapy - with the new technology, they can guarantee that I won't contract another form of cancer with it. This makes it much better than the old way. My wife died from being over treated by radiation. They concentrate the radiation on the area they want, and only zap that area. The surrounding area does get small amounts, but not enough to make a difference unless I were to live to be about 140. The treatment takes about 5 to 10 weeks, and is a daily dose with monitoring 5 days a week. The side effects are minimized, but there are still side effects.
- Chemo therapy - Since pancreatic cancer has a nasty habit of coming back, as well as spreading without notice, and radiation is localized, chemo covers the rest of the body. Again, it has been refined to cause as little damage as possible. Suffice it to say that if I wanted to have more kids, I would have to donate sperm before the treatment begins. This is also a fairly long term treatment.
- Clinical trial treatment - They are into "phase 3", which means, they have had success with the treatment (yes, it's still experimental) and have already determined what dosage to use as well as when and how to administer it. Phase 4 is the final stage before it gets submitted for FDA approval. They have had great success with this treatment, with little or no side effects. Tested on 5 people as an example, 4 benefited from it, and the fifth succumbed to the cancer due to their being too far gone already. I volunteered for the treatment and was accepted, but may be dropped depending on the outcome of tomorrows MRI.
They vary treatment based on the data they have as well as their gut feeling, basically an educated guess. My treatment would be a 3-parter, or a sandwich approach. I would start with chemo, switch over to radiation at some point, or it would overlap if they figured I could handle it, and then go back to finish up with chemo.
Since the clinical treatment hasn't been approved yet, it wouldn't be a part of the treatment, but would be incorporated separately during the treatment. There is an indication that the clinical treatment is a cure, but they still have to do the other therapy. It is called a vaccine that strengthens the immune system to fight the cancer on it's own. If it works as they say it does, it will make chemo and radiation therapy obsolete for pancreatic cancer.
So, the waiting game ends probably in two days, since it takes time to process the test results. They did promise speed in the upcoming treatment, but they may also tell me that things have progressed too far and all they can do now is to put me into palliative care. If they decide to do something, it would be to take part of my liver out and hope that I survive. The liver does grow back given time, but with everything else that has happened, I don't know what to expect.
I have gone through this process for only 6 months of my entire 57 years, but it feels as if I have never experienced anything other than this pain and discomfort.
No matter. I would still go through the weight loss surgery again, if I had to. It was so much easier than a Whipple.
My weight has dropped to 186 as of this morning. Food is starting to taste better.I still have to be careful because some of the food going in, doesn't work so well coming out.
I can now drink more crystal lite than before, and like tea again. Coffee works too in moderation.
My vitamin intake has suffered but I was told not to worry too much. I still try to get my calcium, iron, and multivitamins on a regular basis.
Stay tuned.
May 12, 2012
Part two.
In addition to the "Whipple" procedure, the team at HUP did some other interim work and that helped me to feel a little better.
After the Whipple which took about 6 hours and required them to cut me open across my diaphragm, I was in a lot of pain and much discomfort. Since they had joggled my insides, my bowels were blocked up and I didn't go for a full week. When I did, it was painful and very uncomfortable. This feeling continued for almost a month afterwards.
Food tasted terrible and no matter what I ate, it felt horrible once inside me. This problem went on for the entire time of my recovery.
They told me they were sending me home and that I needed a caretaker, so I asked my daughter if she could find someone. She did, but when I went home, she told that that person had changed their mind and went on vacation instead.
On a side note, during the month before I went into the hospital, I had sold my home. I had lived there for 20 years and raised my kids, dogs and cats. This place really was home to me, but since my wife had died in 2010, it no longer felt right to be there. I listed it for sale 2 days before Christmas last year, and it sold to a young couple just starting out. I had done as much as I could to bring the place back into shape, including painting everything neutral colors, landscaping the yard, and other work inside the place. I left the kitchen and bathroom alone which would have cost me quite a bit to replace. I figured the new owners could do the work themselves to their liking.
I had been packing and getting rid of stuff since my wife got sick and it became obvious that she would never go home again. It was therapeutic for me as well as cathartic. It gave me a chance to go through everything in the house to relive memories both good and bad, as well as decide that I really didn't want to carry all that crap to my next destination.
One other thing is that I needed to make a clean break, so getting rid of the clutter allowed me to start over. It felt good and bad.
Back to the story:
Closing on the property was on the 30th, and my surgery had been on the 20th. I hadn't gotten out of the hospital by then, so I signed over power of attorney to my daughter so she could take care of any problems that occurred. None did, so she had an easy time of it.
I also asked her to move the rest of my stuff into a storage unit. I gave her a list of what I wanted to trash, but she pretty much ignored the list in favor of efficiency and getting the job done quickly. Many things unrelated were thrown into empty boxes, and they were all put into storage.
I was offline while in the hospital, but had found a decent looking apartment that was close to my bus route before going in, so I asked her to secure it for me, which she did. I also had gotten a friend to help me move stuff around in the storage unit so that I was able to actually put my little red car in between and still close the door. It was amazing to know that all I had left after overfilling a 1200 square foot, 3 bedroom, 1 bath home with full garage....I could fit everything into a 15' by 15' storage unit and still have room for my car!
The hospital released me after holding me for an extra week. They held me because they knew that I had no one to take care of me. I had asked that they send me to a nursing home for recovery, but the insurance company refused to pay for that and I was left fending for myself.
The apartment was/is very nice, but I had gotten rid of all of my furniture. All I had left was a recliner/rocker, a few tables, and a twin mattress that I had bought after getting rid of my king size mattress.
I had no food in the new place, and no energy to drive to a market to get it. I had little or no clothing. Not because I didn't have it, but because I couldn't take boxes apart to find it. The same went for dishes, silverware, and anything else that one needs to live. I was lucky to find toilet paper which I really needed badly because of my horrible situation.
I was able to go out to a restaurant and got eggs to eat, but was sick for hours afterwards. I bought some stuff at Wawa, but that didn't go down too well either.
My friend from Maryland called me the second day I was home, and heard me tell about how bad things were. He called me back after a few minutes and offered to take me in. His wife is a nurse and knows how to read the medical stuff. I have never felt good about doing something like that, but was desperate. So, after thinking about it for a few minutes, I called him back and we spoke about all the things I would need and how inconvenient it would be for him. I wanted to make sure he understood how bad things were for me. He agreed to help me anyway.
He offered to come and get me, but I wanted to make sure I had a vehicle when I got better to drive, so I told him I would try to drive myself. This was really a bad move on my part, but I was able to do it anyway. I traveled the entire 122 miles as carefully as I could. When I got there, I was unable to get out of the car without help. It took a few minutes for me to climb the stair into his house. I was able to recline on his over sized couch and that's where I stayed for an entire week. I didn't have the energy to climb the stairs to the bedroom. I didn't have my cpap machine downstairs, so I slept fitfully the entire week, but I slept. I hadn't gotten any decent sleep in the hospital because every two hours they wake you to do vitals or some other thing. This place was quiet and I was able to sleep whenever I needed.
They went shopping for me and bought me food that they though I would need, and I ate what I could, but a lot of stuff went to waste because what I ate one day, didn't always work the next.
I ate a lot of saltines. I ate waffles with peanut butter too. I could tolerate that almost all the time.
My bathroom breaks were timed when no one else was around because the disease made everything so foul that no one needed to be around it.
I hadn't shaved while I was in the hospital, but my hair had slowed down, so it wasn't so bad. I didn't have the energy or concentration to shave, or even shower. But, I had stopped sweating, so if you didn't get too close...
I managed to take a shower one day while my caretakers were out, and I shaved and that wiped me out for the rest of the day. Towards the end of the first week, they asked me if I needed help going upstairs, and I said I would try to make it myself carefully. They moved my stuff upstairs, and I managed to make the climb. The bed was heaven! I hooked up the CPAP machine, and lay down and was out!
I slept like a baby. I came downstairs after that in order to eat or watch TV. They put a chair out on the porch and once the weather got warmer, I was able to go and sit in the sun. That was heaven too. They are on the bay, so watching the different birds, seeing and hearing the boats, was great.
One day, I got directions to a Subway, I went and got a sub. It was terrible, but at least I went out.
I made progress, but it was very slow and I am not patient. I was frustrated, but I had to take what I had been given.
These folks should be nominated for sainthood! They saved my life. I really believe I would have died if not for them.
I was able to connect to their network and got back online. I made contact with some friends who were closer to my home area, and they offered to take me in. I accepted their offer, and was able to make the drive to their home that Saturday. I thanked my friends for taking me in, and since I had learned what I needed from the first couple, was able to streamline things with the second, making it a bit easier for them.
They were able to travel with me back and forth to the storage unit where we moved some of the stuff to the new apartment, little by little. We also re-arranged some of the stuff, making it easier for me to find stuff.
The lady rode with me one day, and we went through boxes and arranged my new kitchen so I could find stuff. She also took stuff off the very top shelf, and lowed them down so I could reach them.
One day, she went with me to Wal*Mart so that I could do some food shopping. I was able to make it halfway through the food aisle before I got too tired and had to go back home. She came back with me the next day and we finished shopping.
My male friend traveled with me to Philly for my follow up appointment, and spent most of the time sitting in a waiting room. What a trooper!
Their home is log, which is absolutely beautiful. It sits at the top of a very steep driveway, and is very far out in the country. I spent hours just sitting at the window looking out. I didn't watch much TV, and the internet was not available to me, so I spent much time thinking and calming down.
We were also able to spend time every night saying prayers.
I lost track of time there, so I'm not sure how long I stayed, but I was able to decide that it was time to try to live on my own, and I got up one morning and did just that.
We will talk about the present in my next post.
May 10, 2012
Long break! Part One.
Facebook has allowed me to stay in touch with almost everyone, but I still like to write things down in a longer form, so I am going to add at least this one more post.
Since I've been gone, the blog designers have decided to complicate the writing process in an effort to "improve" things. They need to leave it alone, but of course they won't ever do that.
The purpose of the blog is to write things down for myself and others to read. If I wanted to illustrate a book, I'd do that. All I want to do is write, not draw, paint, or design!
OK, the last time I wrote something here, I was a bit confused. I had started to lose weight, but I wasn't dieting anymore. My bowel movements had started to change and were causing me concern.
I was tired, and my dietician told me I needed to increase my iron intake. So, I started taking iron pills daily, and then up to 3 times a day. This didn't slow my weight loss or my fatigue and to top it off, I started to itch.
I have read many things over the years about medical conditions, but had never run across a set of symptoms like this. I had recently changed family doctors, and wasn't really happy with the new guy. He had no concept of the bariatric obstacles I had to deal with. So, everytime he tried to prescribe something, and I asked him what the coating was on the pill, he wasn't a happy camper.
There is an obsession with doctors today to try to get people to lower their cholesterol to ridiculous levels. I have always had a negative reaction to statin type drugs. They give me joint pain, and flu like symptoms. I am firmly convinced that I wouldn't have gained my weight if I hadn't been taking statins. I couldn't climb stairs. I felt like an old man when taking those pills. So, I wasn't going to even "try" the new statins that just came out. The doctor didn't like that.
Now, I've tried many other treatments for lowering cholesterol, but decided not to bother anymore and again, doctors don't like that.
So, when I started to have these crazy symptoms, I held off as long as I could before going to this guy. I figured he would send me over for endless tests and just tell me I had a virus and give me more pills.
Well, after he interviewed me, he did send me over to the hospital for tests. I decided to try the new hospital since my bariatric surgeon had transferred over. I had no idea what was about to happen.
I have never been treated so poorly in all my life. I was in fear of losing my life there. I was submitted to tests after being checked in, and doctors came and told me I had liver disease and needed a transplant. But, they couldn't tell me where the disease came from, what caused it, or what to expect.
The people who took my blood for tests couldn't get a "stick" when they went for an IV or taking tubes of blood, and in all the years I've been around, I've always been an easy stick.
There were two times while I was in their hospital where I wasn't fed for two days, and I wasn't given liquids, or even an IV to rehydrate me.
There were two times while I was in their hospital where I wasn't fed for two days, and I wasn't given liquids, or even an IV to rehydrate me.
I did have a visit from the bariatric surgeon who told me I probably needed to have my gall bladder out, but when I told the head doctor that, he just brushed it off.
Then, without any notice, after a week, they sent me home with orders to contact the doctor in about two weeks for a follow up. No mention of the liver failing, or anything else.
I went home feeling totally drained. I was still sick and still had no idea what was wrong. I thought that needing a liver transplant would be a fairly serious thing. But, they just sent me home.
After thinking about my options, I decided I needed help, and another opinion. I spoke with my bariatric surgeon and begged him to find me a doctor that could help me find out what was wrong and fix it. He got back to me and set me up for an appointment the next day with a local surgeon from the "other" hospital.
That surgeon referred me to another doctor who had more experience with diagnosis.
That doctor reviewed my chart and gave me 3 options:
- I could go to Hershey where they have more experience with liver disease and transplants.
- I could go to University of Penn in Philadelphia where they have even more experience.
- I could go to Baltimore's John's Hopkins where they have similar experience to Philly.
I chose Philadelphia because it is closer to my original home. This doctor took out his cell phone and called a doctor at the hospital and scheduled an appointment for me.
I had to have help getting to Philly because I wasn't in good shape and it was a long drive. I had a friend pick me up who was familiar with the area and he drove me.
After seeing me, the doctor decided I needed to be tested again right away. She arranged for me to enter the hospital, where there was no delay. I don't think I spent more than a few minutes in my room before they took me down for tests. They poked and prodded me. They asked me more questions than I can remember.
The hospital was old, but the team there was amazing.
My medical numbers were so far off what was considered normal as to be surreal.
Cholesterol was 650. I am usually around 250-300.
My blood sugar was so far off that they started giving me insulin and taught me how to inject myself. I thought I would have to be on insulin for the rest of my life. The numbers were so far off.
I was still itching and they told me I had jaundice, which was causing the itching.
After a week, they too sent me home, but this time, I had a diagnosis. It wasn't good, and it scared me to death.
I had a tumor on my pancreas. I had never even heard of a pancreas, but when I looked it up, things got much worse. This was one of the worst diseases I could ever have, according to the websites I saw. I had less than a 5% chance of surviving 5 years.
My doctors told me that if I didn't have the operation they were recommending, I wouldn't live to the end of the year.
So, after losing all that weight from my gastric bypass, losing my wife to cancer, and all the other things that happened to me over the past few years, I was given a death sentence.
To say I was angry was an understatement. I had no one to be angry with. There was nothing I had done to contract this disease. You don't get it by smoking, and I didn't smoke anyway. I also don't drink. So, where did it come from?
So now, you will have to wait until I have the energy to write some more because this entry is finished for now. Stay tuned.
January 25, 2012
Falling Punkin seeds!
I agreed to do a "Drop your pants" event for the WLS support group as a DJ.
I am not charging them for the event and don't really feel ready to do something as a DJ, but I'm going to do it none the less.
I have gone through so many changes in the past year or so, that my head is spinning.
I am not the same man I was a year ago, or even a few months ago.
I still have flaws, including the inability to say "no" when asked to do something I don't really want to do. It will be a long night. I will have to carry, set up and tear down my system, and find the energy to do it and stay upbeat the whole time. This is not to say that I won't do my best, but I'm not really up to par at this sort of thing.
I've spent hours and hours, days and days, weeks and weeks, working on my house. I've kept it in the front of my mind for all this time. I go through rooms in my head while I'm driving the bus and I work on ideas to fix things, improve things, etc. , until I am so worn out. I am obsessed with getting this place sold, and making sure it's up to my standards. I am finding it difficult to walk away from it.
I also am having trouble not changing my mind and taking it off the market.
My weight has been steady. I haven't gained or lost anything in about a year. I did lose 3 or 4 pounds the last time I weighed in, and I will continue to do that, but I am now pretty much where I will be for the rest of my life, unless I become more active.
My energy level has also improved, although it's been much lower than I would like it to be.
I am not depressed per the definition, clinically. The number of changes in my life justify any feelings I've been experiencing for the past two years or so.
I am finished mourning, but still remember things to this day. I will always remember what happened, and will never get over it.
I started the other blog and realized that the act of starting it was an accomplishment in itself. Because of this, I haven't written anymore of it. Funny how that works....
I am not charging them for the event and don't really feel ready to do something as a DJ, but I'm going to do it none the less.
I have gone through so many changes in the past year or so, that my head is spinning.
I am not the same man I was a year ago, or even a few months ago.
I still have flaws, including the inability to say "no" when asked to do something I don't really want to do. It will be a long night. I will have to carry, set up and tear down my system, and find the energy to do it and stay upbeat the whole time. This is not to say that I won't do my best, but I'm not really up to par at this sort of thing.
I've spent hours and hours, days and days, weeks and weeks, working on my house. I've kept it in the front of my mind for all this time. I go through rooms in my head while I'm driving the bus and I work on ideas to fix things, improve things, etc. , until I am so worn out. I am obsessed with getting this place sold, and making sure it's up to my standards. I am finding it difficult to walk away from it.
I also am having trouble not changing my mind and taking it off the market.
My weight has been steady. I haven't gained or lost anything in about a year. I did lose 3 or 4 pounds the last time I weighed in, and I will continue to do that, but I am now pretty much where I will be for the rest of my life, unless I become more active.
My energy level has also improved, although it's been much lower than I would like it to be.
I am not depressed per the definition, clinically. The number of changes in my life justify any feelings I've been experiencing for the past two years or so.
I am finished mourning, but still remember things to this day. I will always remember what happened, and will never get over it.
I started the other blog and realized that the act of starting it was an accomplishment in itself. Because of this, I haven't written anymore of it. Funny how that works....
January 6, 2012
New blog
I started the new blog, but didn't advertise it because I didn't want it to be very public.
It turned into something I didn't expect and I want to follow it to see where it goes. It will be a place I can express myself and my opinions at that particular time, without worrying who's feet I step on.
If it goes public, it may not be so popular. That's OK. I explained in the very first post that I need a place that I can unload my ideas, no matter how crazy, in order to quiet the voices in my head and allow me to think a little more clearly.
My first post was more of a list of rules for the blog, and a series of disclaimers. They seem to be very important in today's world.
So, I hope it stays private and I hope it helps me.
I am not sure I mentioned here, but I decided to make a list of ingredients that are in the WLS for dummies book and start trying the recipes one after another in order to find new things to eat and to regain control over my weight again.
I am having trouble with energy levels, and the surgeon and his team haven't been able to offer any suggestions. I still think it's related to the statin pills I took a few months ago. I felt great up until that point. Now, my fingers and joints ache and I can't play my guitar. I talked about all this before.
So, as I continue to move forward in my life, I hope to be able to do so without falling over from exhaustion.
If you are interested in reading my new blog to see what insane ideas I have, let me know in private and I'll think about aiming you in the right direction. Email:
imovitz@aol.com
It turned into something I didn't expect and I want to follow it to see where it goes. It will be a place I can express myself and my opinions at that particular time, without worrying who's feet I step on.
If it goes public, it may not be so popular. That's OK. I explained in the very first post that I need a place that I can unload my ideas, no matter how crazy, in order to quiet the voices in my head and allow me to think a little more clearly.
My first post was more of a list of rules for the blog, and a series of disclaimers. They seem to be very important in today's world.
So, I hope it stays private and I hope it helps me.
I am not sure I mentioned here, but I decided to make a list of ingredients that are in the WLS for dummies book and start trying the recipes one after another in order to find new things to eat and to regain control over my weight again.
I am having trouble with energy levels, and the surgeon and his team haven't been able to offer any suggestions. I still think it's related to the statin pills I took a few months ago. I felt great up until that point. Now, my fingers and joints ache and I can't play my guitar. I talked about all this before.
So, as I continue to move forward in my life, I hope to be able to do so without falling over from exhaustion.
If you are interested in reading my new blog to see what insane ideas I have, let me know in private and I'll think about aiming you in the right direction. Email:
imovitz@aol.com
January 2, 2012
New Year revolution?
I am trying to decide whether it would be worth my time and energy to start a new blog.
I'm trying to limit this blog to the subject of weight loss surgery, but as you can read, that hasn't happened in the past year or two. You can go back to the archives to see why I started this blog. It was a selfish move on my part. I really thought I had something to offer, and I did.
But now, I no longer feel like a weight loss surgery patient. I have gone through so much change that it's time to wean myself from this blog and start something new.
The problem is that most blogs concentrate on one subject. I feel like a politician sometimes: You know, when a reporter asks a politician a question, and they go off on some tangent and say what they want, rather than staying on topic?
Being eclectic in my thoughts and wanting to write them down here messes up the original purpose of this particular blog.
Is there such thing as a catch all type of blog, where I can just say what's on my mind? I'm sure there is something like that.
I may come back here once in awhile because I am still a WLS patient, even if I don't feel like it anymore.
I'll set up a reference to my new blog here in case you want to cruise over and see what's on my mind. I can promise nothing at this point.
I use this blog for a number of reasons, many of them as a way of procrastinating from doing some of the things I should be doing instead.
Happy New Year!
I'm trying to limit this blog to the subject of weight loss surgery, but as you can read, that hasn't happened in the past year or two. You can go back to the archives to see why I started this blog. It was a selfish move on my part. I really thought I had something to offer, and I did.
But now, I no longer feel like a weight loss surgery patient. I have gone through so much change that it's time to wean myself from this blog and start something new.
The problem is that most blogs concentrate on one subject. I feel like a politician sometimes: You know, when a reporter asks a politician a question, and they go off on some tangent and say what they want, rather than staying on topic?
Being eclectic in my thoughts and wanting to write them down here messes up the original purpose of this particular blog.
Is there such thing as a catch all type of blog, where I can just say what's on my mind? I'm sure there is something like that.
I may come back here once in awhile because I am still a WLS patient, even if I don't feel like it anymore.
I'll set up a reference to my new blog here in case you want to cruise over and see what's on my mind. I can promise nothing at this point.
I use this blog for a number of reasons, many of them as a way of procrastinating from doing some of the things I should be doing instead.
Happy New Year!
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