|Tonsil Cancer Diary | Life After Treatment | FAQ | Contact | Home
|Somewhere near Richland, WA. Summer of '08|
I would first like to say that I wouldn't be alive today if it wasn't for my wife Joyce. She cared for me night and day, didn't complain once and was a rock. Thank you baby. I love you! I truly believe that this whole ordeal is hardest on the caregiver.
Miracle of miracles. We sold our condo in Quincy. The buyer wants to be in by the end of the month, but we can't do that. We agreed to close on May 15. We'll have to live in a hotel for a least 2 weeks.
My last day of work in Quincy is tomorrow
During all of this Joyce has been dealing with a mass in her left breast. She's had every kind of scan they have, but they can't tell us 100% what it is. It could be a cyst or it could be cancer. Today the mass was removed. The doc said it looked benign.
We're in Rockford, picking out things for the house. You know, the carpet, tile, light fixtures and everything else. And I do mean everything else. I had no idea it would be so draining. While we're at the counter top place, picking out granite for our kitchen, Joyce gets a call. The lab report is back. Thankfully, the mass she got removed, turns out to be benign. That's one bullet dodged.
I had a follow up with my family doc. She referred me to an ENT specialist and scheduled a CAT scan. It looks like it's time to take this lump seriously.
I got the CAT scan today. It wasn't too bad. I'm glad that something is finally being done about this. Good or bad, at least we'll find out something.
We drove to St. Louis to have dinner with friends. We'll be moving 6 hours away and don't know when we'll be able to see them again. I played golf with Brian for 10 years. I'll miss that.
I saw the ENT doc and he went over the CAT scan results. I've got a big mass under my jaw on the right side. He told me it's either a cyst or cancer. They'll need to do a biopsy to find out. He looked up my nose and down my throat with some kind of tube. He said he didn't see anything suspect. The biopsy is scheduled for next week.
It's my Mother's birthday. She's had a rough time of it. Dad died two days after Thanksgiving. It just happened to be their anniversary. She hasn't been well since. A couple of months back she had a stroke and has been in and out of the ICU. I've been driving back and forth to Springfield, MO a lot lately.
I got the needle biopsy today. I could tell by the doctors reaction that it's cancer. Still I still hold out some hope that it's just a cyst.
I'm in Rockford today and that's where I get the call. I've got Cancer. I've got a mass on the right side of my neck. It's a little smaller than a baseball.
I'm really in a bit if a jam. If I were going to be staying in Quincy, he would have sent me to St. Louis for treatment. But now I'll have to find new doctors in a new town. For now I'm going to let Joyce deal with it. For some reason I don't want to. I don't feel like doing anything but sleeping. This is supposed to be a great, fun time in our lives. Moving to a new town, starting a new adventure. What a drag. My first thought wasn't that I was going to die, but what an inconvenience this was going to be. How strange is that?
We went out to dinner and we tried not to think about it.
Now I'm afraid. One of my first thoughts this morning was, am I going to live long enough to see our new house built? How stupid is that? The house is going to be done in two weeks. I'll live that long. Won't I? It's funny how I started thinking on the short term. Joyce mentioned that I need new tennis shoes. She's right, but I don't want to go buy a pair. If I'm going to die, why bother? I don't want to waste any money. Joyce might need that $40 to help bury me.
The movers are here to pack us up. Joyce's new company is paying for the move, so we're getting the deluxe treatment. They do the packing. I'm not sure how much experience the packers have. They don't seem to be labeling the boxes very well.
We closed on our house in Quincy. I drove back to Rockford with a big check. This should be the last time I have to make the 4 hour drive. I got back to Rockford and move into what will be our home for the next 3 weeks, the Residence Inn.
I had my first appointment with my new ENT doc here in Rockford, Dr. Ferguson. He seems like a good guy. He was Joyce's find. Good work baby! He looked at my CT and scheduled my first PET scan. This is supposedly THE TEST that's going to show where all the cancer is. The lump on my neck is a lymph node that's swollen with cancer cells. The big question is where is the cancer coming from?
I had my fist PET scan today. It showed the cancer is only in the mass. At first I thought this was good news and I guess in a way it was. But, what the PET scan didn't show was the source of the cancer or primary. Cancer cells were collecting and multiplying in my lymph node. But, where were they coming from? If the source isn't found, I'll have a pretty rough go of it.
The mass was removed from my neck. The surgery took two and a half hours and went well. I was supposed to spend the night in the hospital, but Dr. Ferguson said things went so well that he was sending me home. I wish we had a home, but for now the hotel will have to do. I'm not feeling too bad. Joyce is taking good care of me and I'm not in to much pain. I've discovered Vicodin. What's bothering me is the drain tube I've got coming out the side of my neck. The fluid collects in a small bladder I can hide under my shirt or in my pants pocket.
I had my follow up with Dr. Ferguson. He said everything looked good, but I had to keep the tube in. What a pain, literally. My neck is starting to feel real sore. I'm starting lose faith in my new friend Vicodin.
We closed on our house in Rockford. When I say we, I mean Joyce. She had my power of attorney. I didn't think I'd be up to meeting with people and signing papers. So far, no one here in Rockford knows I'm sick. I'd like to keep it that way for now. There is still some work that needs to be done to the house, but at least we'll have a place to put our stuff. The moving truck will be here on Monday.
It's Monday! The moving company delivered out stuff. What a mess it turned out to be. I'm not supposed to be doing anything, but of course that wasn't going to happen. I tried to keep an eye on the movers the best I could, but as it turns out, I didn't do a very good job. Half of the boxes that went in the basement should have gone upstairs. We've got mis-labeled boxes all over the house. It's going to take a week to straighten out this mess. I'm doing my best to sit on my butt and let Joyce do all the work. It's hard.
|Larger Image||Larger Image|
Big joy today. I got the drain tube removed. I'm starting to feel human again. I did a little work at the house. I'm sure it was more than I was supposed to, but I don't think I pushed it much. Of course Joyce thought I did too much.
We checked out of the Residence Inn today. Tonight will be the first night in our new house. I'm feeling 70%. A high point, Dr. Ferguson said I can ride my motorcycle. It will be great to get Tiger out of storage and bring her home.
I had my first meeting with my new Radiation Oncologist, Dr. Bryan. He scheduled another PET scan. We need to find the source. If not, they'll have to treat everything in my head and neck. There's talk of feeding tubes, teeth falling out, saliva glands dieing, there's even a chance I'll not be able to swallow or talk again. I guess I'm dealing with it by not dealing with it. Things just don't seem real. This can't be happening. Can it? His nurse, Lisa, said that our goal would be to feel better and get back to normal in a year. A YEAR! What the... How could it take so long? She said the last guy that underwent this treatment lost 100 pounds. As big as I am, I don't think I've got a hundred pounds to lose.
I had my second PET scan today and we got a hit! The cancer is coming from my right tonsil. I'm told to wait for a call from Dr. Ferguson, Dr. Bryan wants a biopsy. This is potentially great news. This could greatly reduce the effects of the radiation. They won't have to blanket everything with radiation, but can focus on the right tonsil area. Tonsil Cancer? Who would have guessed that?
I mentioned moving from the St. Louis area and leaving friends behind. But, as things would have it, moving to Rockford put us closer to another set of friends that moved to Madison, WI. Joyce and I met Klem in Janesville for a round of golf. We played like crap, but it was great to see him. Unfortunately we missed Jana. She was visiting at home in Slovenia with their son Kal. We'll catch up with her when she gets back.
Dr. Ferguson says screw the tonsil biopsy; let's just remove the dammed things! Three weeks to the day that I got my mass removed, I got my tonsils removed. All went well and he sent me home, that day. I'm not in too much pain, but I can tell this is going to be a lot worse than the first operation.
Check this out. I think I almost died tonight. We went to bed at 10:00 and I'm not feeling too bad. I'm on drugs and I'm thinking I can get some sleep. At 12:30 I wake up with a mouth full of blood. I get up and spit it out, but there's more and it just keeps coming. Long story short. Joyce gets me to the hospital on time. I was starting to see stars and really thought I was going to pass out. Could one 'bleed out' that fast?
I get to the ER and they stop the bleeding. Have you ever seen what they give people in hospitals to spit in? On the way there I filled one of those up. The ER people were impressed.
Apparently there's a MAJOR artery in the tonsils. The things you learn. Anyway, they put me in ICU. I'm given a jug to piss in and instructed to not move around too much, keep the bed at a 30 degree angle and don't even think about getting up. Like I could anyway. I've lost what seems to be my entire supply of blood, plus I'm tethered to every piece of equipment in the room. I don't mind a little attention from folks every now and again, but this was staring to get ridiculous.
Joyce was great. She kept it together pretty good. She was kind of shaky on the way to the ER. I bet she was worried I was getting blood all over her car.
I got released, Sunday afternoon. I could have gone home sooner, but my doctor is a golfer. I bet he got in 18 before coming to the hospital to spring me. I seem to be on the mend, but I'm being real careful not to clear my throat. I think that's how the whole thing started.
The morphine from the hospital is all worn off and I wish someone would shoot me. That's right. Shoot me in the head, DEAD. At this point I'd almost welcome it. I never thought it would hurt this much. Ice cream even burns. What a bitch. I feel ripped off. All your life you've heard, 'all the ice cream you can eat'. What a crock! As it turns out dairy products have something in them that make the open wounds burn more! The freezer is loaded with ice cream and I can't eat a drop of it. Believe me, I tried.
To top things off I had my first meeting with, Dr. Korkmaz, the Medical Oncologist. He told me all the bad things they're going to do to me. I can't wait. He said I was going to lose my hair, lose 40 pounds and generally feel miserable. Isn't that just great! I'm not sure home many sessions of Chemo I'll need.
I couldn't hardly stand up or talk, but I was still able to go look at cars and try to make a deal on one. I must be getting better. This is my 6th new vehicle in since 2001. Thank God Joyce understands.
I went in looking for a Jeep Liberty. I had one 'back in the day' and liked it. After test-driving a new 2006 I wasn't impressed, as I'd hoped to be. It rode great and felt very sturdy, but there was something I didn't like. I couldn't put my finger on it. It could have been all the plastic in general on the inside. Plus it was a little cramped for me.
After we got back and the salesman started trying to sell me a car I didn't want, I saw just what I wanted on the showroom floor. It was a red, decked-out Trailblazer. It had all the creature comforts the truck did. Leather, all power everything, sunroof, XM radio, and the works. How could I not love it? I took a test drive to Mt. Morris, to show Joyce, and it drove out great. I can't believe how quiet it is. Anyway, the best wife in the world said buy it. How lucky am I?!!
Joyce left for Niagara Falls on another business trip. She'll be back on Friday.
I had my follow up with Dr. Ferguson today. My tonsils or lack of them, are looking good. I hope to be able to eat some real food by the 4th of July. By the way, the new Trailblazer is great! Joyce got back safely from her trip.
I met with Dr. Bryan, the Radiation Oncologist. We had a treatment planning session and I was fitted for the "mask" that will hold me in place during my treatments.
I never thought getting my tonsils removed would be that big a deal. I knew it was going to hurt some and it might be hard to eat, but I didn't expect that much discomfort. I went a week without being able to eat or sleep much. I lost 14 pounds. I'm able to eat again, more or less. It still hurts a little, but not too bad.
Today was final mask fitting day. Below are pictures of the torture device. I'm to be anchored down to a table and for a half an hour get zapped like a microwave dinner. The mask is tight. So tight that you can't open your eyes. You can't move a bit. They don't want to zap something they're trying to save. I'm going to lose one salivary gland as it is. I'm told red meat will start tasting like metal. I've never liked fish. If red meat can taste like metal, seafood could start tasting like fruit pie. I heard ice cream could start tasting bad. Of all the bad things that may happen to me, the thought of not enjoying a Dairy Queen Blizzard could be the most frightening.
I'm somewhat claustrophobic, so I think I'm going to get to know my good friend Valium a little better. All kidding aside. Yes, this is as uncomfortable as it looks.
It's been a full week of treatment. To be honest I feel like crap. If the next two months are going to be like this, I don't know if I can handle it. I don't know if it's the Erbitux, Cisplatin, the radiation or all three, but I haven't felt this bad in a long time. I'll have to look into the effects of taking both Erbitux and Cisplatin at the same time. It can't be good.
I spent last weekend with the hiccups. They started Friday and were on and off all weekend. I didn't get much sleep on Friday night. Joyce finally called that they gave me some Thorazine. While it didn't knock them out, it helped relieve things a bit and I got a full night's sleep on Saturday night.
I've got the worst taste of dry sour milk in my mouth, and it won't go away. My throat doesn't really hurt yet, but when I do try to eat something, I can't taste it. Add in wanting to puke from time to time and you've got my day :) Oh, and I look like a 16 year old. One of the side effects for the Erbitux is teem age type acne.
I've got chemo again tomorrow. I'll let you all know how that goes.
For all of you that have written notes of sympathy and concern, thank you very much. I'm feeling much better. Your emails make my day.
During my last Chemo session, on Thursday, I only had Erbitux. The only side effects from it so far seem to be the rash on my face and fatigue. I'm good for about a half an hour on my feet, then I'm ready to sit down.
I've lost almost all ability to taste. Sugar and salt are about it. At this point either I can't taste what I'm eating or I find it disgusting. I've put off all thought of getting a feeding tube, but I think it inevitable.
The chemo has given me teenage type zits, the likes I've never seen before. There's hardly a clear spot to be found. At first I didn't want to go out in public, but then I said screw it. What do I care if a scare small children with my hideous appearance :)
On a positive note, I'm still holding onto my hair. I need a hair cut, but don't want to fork over the $12. If it falls out on schedule, I may be bald by the weekend.
I'll be getting a feeding tube next week. I know that sounds bad, but by then I probably won't be able to swallow without it killing me. I can't taste anything anyway. Everyone says the tube makes the reminded of the treatment much easier.
I have yet another doctor, Dr. Baskin. He'll install my feeding tube on Friday. I can't wait. A bad sore throat from the radiation has really set in, so it's been a couple of days since I've had anything to eat. I'm also having trouble drinking, so I spent 2 hours, today, getting IV fluids. I was pretty dehydrated. It took 2 liters to fill me up. For this new pain, I'm sporting a new Fentanyl patch, but so far it hasn't done any good. They said it would take 24 to 48 hours to start working. While I wait for that to kick in, I'm still eating Vicodin like they're going out of style.
Looking on the bright side, I've still got my hair and I've lost another 10 pounds.
It's Sunday night and I owe you an update. I got my feeding tube on Friday, then spent the night in the hospital. I can't say how much the tube has helped. Now that I can drink and eat (all liquid, but you know what I mean), my throat feels a little better. I'm literally on more drugs than my poor Mother. Being able to crush pills or use a liquid form, may very well be my lifesaver. My now old friend Vicodin has been replaced with the liquid form of Oxycontin.
Not all the news is good. Joyce and I spent most of Saturday night in the ER. I'm running a fever and with me being on Chemo and having such a low white blood cell count, this could be dangerous. I've only got three more weeks of Chemo and Radiation left. I've crossed the half way mark, so having to stop now, to treat this, would be bad. They've taken two sets of blood cultures. They think they've isolated the virus, hopefully the cultures will confirm things.
Joyce has been more than great through all this. I'm sure I wouldn't have made it this far, without her. She waits on me hand and foot, takes care of all the insurance and countless other things. Not once has she complained. Thanks Baby!
Also, thanks to all of you. It's great getting your email. If you don't hear back from me for a few days, I'm not dead, I'm probably just napping :)
Another week of treatment is in the books and I'm feeling good. My fever is gone, so I was able to go ahead with my chemo this week. I got my last dose of Cisplatin, so I'm looking forward to getting sick in a day or two. At least that's what happened the last time. While I've only got two weeks of radiation left, I was wrong about how much chemo I had left. I thought I'd just have to do it while on radiation. But no, I have 5 more weeks. I can live with that. The Erbitux has very few side effects. Nothing real debilitating. It may keep me off my motorcycle a little longer. I hope I don't miss the whole riding season.
The feeding tube is great. I should have had it put in sooner. For all you patients out there, if your doctor wants you to get the tube, do it! I've got lots of energy, I'm not dehydrated and really am feeling 100% better. I've even put a some weight back on. That was a little disappointing.
There's not much more to report. I'm not in too much pain. One of my doctors said my throat looked shredded. I guess the opium-based pain killers are working :)
It's Sunday and I owe you an update. Well, it hasn't been a very good week. On Tuesday, Joyce left for Atlanta, on business. She was gone till Friday. It was SO GOOD to see her walk through the door on Friday.
Monday morning, after radiation, I got sick. I mean sick like I haven't been in a long time. I guess my latest round of Cisplatin kicked in and it was bad. I had all the usual Chemo side effects. Not being able to keep food or meds down, got me in a little trouble. By Wednesday I was so dehydrated, I was having trouble standing. I went in for radiation, but was too sick. They put me in a bed and an IV in my arm. After two liters, I felt a lot better. The doctor was going to admit me, but I guess I bounced back well enough to be sent home. The next day I got another liter of fluid and was back to my normal self. Thank God the sickness has passed and I'm feeling much better.
That being said, I've got a couple of new problems. I've lost some of my hearing. I can't hear higher pitched sounds. If there's music and voices on TV, I'm having trouble hearing the voices. Plus, I've got a constant ringing in both ears. Again, my hearing is one of those things that may or may not return. The doc said I'd get used to it. The other thing, I think is worse. The tips of my fingers have dried up and split open. It's a side effect of one of the Chemo drugs.
Sorry for all the doom and gloom this week. On a positive note, this is my last week of radiation. I can't wait for my throat to start healing. From what I understand, it will start healing two weeks after the treatment ends. The feeding tube is nice and it's keeping me alive, but not being able to eat is the worst.
First I'd like to say thanks to all of you who wrote me this week. I'm feeling much better! The Cisplatin shouldn't be messing with me any more. My fingers and hands are still cracked and bleeding, and my throat is still raw. I can deal with that. My pain doctor said we'll just keep upping the drugs until we get to a level that works. Now that I'm DONE WITH RADIATION and only have a few more Erbitux sessions left, I should start to heal up in a few weeks.
Now we start what I think is going to be hardest part of all this. We wait. I don't go back to the radiologist until December 14. I'll be given another PET Scan and we'll see if the cancer is gone. It's going to be a long three and half months.
I know I'm a few days late with this update. Sorry.
I think I'm starting to heal up. I'm needing less pain medication and I'm sleeping better. My fingers are still cracked, I can't talk and every now and again I get sick. The getting sick part is strange. I'll be feeling great and then out of the blue, there is it.
Hopefully this is my last week of Chemo. I've had 8 sessions of Erbitux and 2 sessions of Cisplatin. Last week he said he may only do 9 sessions of Erbitux. I hope so. I need my fingers to heal up. It's hard to use them and I bleed on things.
All that being said, I really do feel better. I suspect that a month from now, I'll be well on my way back to normal. As soon as I'm able to swallow water, I'll be in a lot better shape. I need to be able to drink, before I can travel. I don't want to have to pull the car over, or find a place to hide every time I want to take a drink. In others words, I can't be whipping out the feeding tube and 60CC syringe every time I get thirsty. I might attract undo attention on a plane :)
I'm thinking of posting a picture. I think I look ten years older.
The big news this week is that I'm done with chemo. Joyce and I went this past Thursday for chemo and the doc took one look at my hands and said we're done. He said I couldn't take anymore. I knew there was a chance he'd stop it and I'm so glad he did. I'm ready to be done with this for a while.
My next goal is to soon be able to drink and maybe eat a little something. I've tried a few things and so far everything tastes awful. I mean, just terrible bad. I hope this part of it passes quickly.
I'm doing pretty good. My hands are feeling better. I don't have to wrap them anymore. And, I haven't been sick for days. I still don't have much energy. If I do the smallest bit of work, I have to stop and lay down. I think it's time for me to get up off the couch and try and do stuff. What stuff, I have no idea, but I feel like I should be doing something. Not having to go to treatment everyday feels like retirement. I got Tiger's battery all charged up and ready to go. I hope to be well enough to ride soon.
Joyce leaves for China next Saturday. I wish I was going with her. I hope she has a great time. She deserves it.
That's about it. Next time, I'll have Joyce post some China pictures.
I'm desperate to get off the pain drugs. I hate being dependent on them. Plus, I don't like all the side effects. I haven't had a good nights sleep in a long time.
Joyce got back from China last Saturday. She had a great time and I'm glad. I'm also very glad she's not going to be leaving the country again anytime soon. Her being gone last week was rough. I worried about her the entire time she was gone. She takes such good care of me. I wish I could have gone with her, so I could have looked after her. She's got lots of pictures. When we get them organized I'll post them on our other site, www.neth.us, and put a link to them, here.
I had my first big test this weekend. Friday we loaded up the car and took a trip to St. Louis. We made these plans a month ago, intending to watch my nephew play football, but he got hurt a few weeks ago. Anyway, I was so looking forward to this trip. I used the date as a goal to feel better. I loaded up all my drugs, sprays, tape, you name it. I took pills I haven't used in weeks, just in case.
We started out Friday morning. It's a 5 hour drive. Back in the day, this would have been nothing, but I only made it 2 hours. Joyce took over and I had a good nap. This was my first sign that I might not be as recovered as I thought/hoped I'd be.
The short version of the trip is that we had a good time and I'm glad we went. Saturday we went to the zoo. We walked around for a couple of hours. I had fun, but had reached my limit. After a short rest, we went to visit our friends, Brian and Jane. It was good to see them. Brian said I didn't look as bad as he thought I would. I guess that's good, right? I had to watch them eat. That was rough. Brian tried to make it easier, by making stuff I don't like. Again, I was only good for 2 hours. We went back to the hotel and rested up, then went to my sisters. And once again, it was good to see them, I had to watch everyone eat and only lasted 2 hours.
Over all I'm glad we went, but I'm not as recovered as I thought. The lack of energy is a real problem and I'm not sleeping well, as it is. Being in a hotel didn't help. Having to eat through my tube was another issue. Every 3 hours we'd have to stop what we're doing and find a place for me to hide. I need/want to go see my mother, but she's 9 hours away. Sadly there's no way I'd make it.
|My Birthday Pie
Eating and getting off the feeding tube is my main focus. I can't tell you how free I'd feel, if I could ditch the tube. It was literally a life saver at one time, but now it's more of hassle, than anything else.
My throat feels OK until I get 6 to 10 good swallows in. Then it starts to hurt. This I could tolerate, if things tasted better. For those of you who have gone through this, you know what I mean. Some stuff will have a hint of flavor, but lose it after a few bites. Other stuff just plain old tastes like crap. Couple that with having very little saliva and meal time isn't what it used to be. I'm told that in most cases this will pass and things will return to normal. Dr. Ferguson said it would take 6 months to a year.
I'm feeling better everyday and my strength is improving. I'd like to start weaning off the pain meds. I don't like the side effects and I want to know my true pain level. We meet with the pain doc, Dr. Cirella, on Thursday. I'll find out then.
Not much to report this time. I've been making, be it slow, but steady progress. Last weekend Joyce had business in Milwaukee. It was just one night, so I went with her. The high point of the trip was the breakfast buffet. I'd been nibbling a little real food here and there, so I was anxious to see what I could eat. As it turned out, I did better than I thought I would. I had a spoon full of eggs, a piece of bacon, some juice and several other bites of odds and ends. Since our return, I've been trying to substitute one liquid meal a day with real food. I'm now down 50 pounds, so I better start eating more. It's hard. Some things still taste bad, but most things have no taste at all. My mouth is still very dry, so that's an issue. I can't handle anything that's too dry.
I'm getting weaned off my pain meds. It will take about a month and a half and I have to say it sucks. I'm on opiates, so it's like I'm coming off heroin. Poor Joyce, several nights a week I'll wake her up shaking and sweating, thinking I can't breathe. I'll take some drugs and she'll rub my back till I fall back asleep. I'm a very lucky man. Love you baby!
Thanksgiving is coming up. I hope everyone has a nice one.
Cheeseburger! That's what I had to eat the other day. It took about an hour, but I managed to eat a Culver's cheeseburger, a few fries and a small vanilla custard. Each item had just a hint of flavor. But, best of all, nothing tasted bad. I'm now eating at least one meal a day, the old fashion way. I'm scheduled to get my PEG tube out on December 1st. I'm sure I'll be ready.
I'm still trying to kick the pain meds. I'm down to a 50mcg/hr patch, half what it was, but I'm still taking a lot of Oxycodone. Seems I've still got some pain that the Fentanyl patch was masking. I've got some swelling on the right side of my neck, but no hard bumps or lumps. I'm taking that for a good sign. I'll have a new PET scan done in a couple of weeks and we'll find out if the treatment worked.
Hello, I hope everyone had a nice Thanksgiving.
Joyce and I went to Pittsburgh for a week. It was fun and felt great to get out of town. The one problem I had was that my mother-in-law loves to feed me. In the past, a trip to Pittsburgh would net me 5 to 10 new pounds, but not this time. She tried to get me to eat some of my old favorites, but I just couldn't do it. I can eat, I'll get to that, but only certain types of things.
How am I feeling? Pretty good! I've got a lot of my strength back and look for any excuse to get out of the house. The living room upstairs was starting to feel almost like a prison, so I've moved my base of operations to the basement. The change in scenery was welcome.
I'm starting to eat a little more. Salty foods like bacon and tomato juice taste like they are supposed to, but most foods have little to no taste. That aside, I'm able to eat just about anything. My mouth is still dry, so I have to chase most bites with water. This makes for an active overnight. Getting proper sleep has been a bit of an issue.
I'm down to a 37mcg/hr Fentanyl patch (a 25 and a 12). Weaning off hasn't been fun. I hope to never do this again. I've still got a little pain, but not much and it's controlled with OxyIR. The OxyIR is also helping with the withdrawal from the Fentanyl.
The summary. I'm mobile again and doing great. I can go out to dinner, catch a ball game, whatever. I just reserve the right to nap every now and again.
I should get my first post treatment PET scan, late next week. I'm starting to get nervous about the results. I couldn't imagine having more treatment. I'm just starting to feel human again.
I had a PET/CT scan last week and it came back clean. There was something about readings in my right shoulder, but they thought it was arthritis. Anyway, I had an appointment today with Dr. Bryan and he said everything looks great. I'll go back to see him in six months. Meanwhile, I'll see Dr. Ferguson (ENT) once a month and get scanned every six months. If I can stay cancer free for two years, the odds of survival go way up.
I'm still getting most of my nutrition via liquid, but I try to eat solid food once a day. It's hard because of the taste and my dry mouth. I had a hamburger yesterday and it took forever to eat. One doc is telling me that my taste and saliva will come back to normal and one doc that says it won't. I never thought spit could be such a big deal.
I'm half way to being off the pain meds. I'm not using the patch anymore, but I'm still on the Oxycodone. My next job will be to kick it.
Hey all, I hope everyone had a good holiday. Joyce and I went to Springfield, MO. After 10 months I was finally able to see my Mother. She looked pretty good. Her health has been up and down since Dad died last year.
I'm four months post treatment and doing pretty well. Most of my meals consist of solid food, the rest of the time I drink Ensure or Instant Breakfast. I still can't taste things very well, but my mouth isn't as dry. I have to drink water with most things, but it seems to be less necessary these days.
Over all things are good. Some days I feel great and some I feel like staying on the couch all day. Lack of energy is my biggest complaint. I think once I'm off the pain killers that will help. I should probably start working out again. I need to build up some stamina.
Sorry for the delay. I'm feeling so good, that I been out and about.
Things have been going well. About two weeks ago something clicked. Suddenly I was able to taste things just a little, and then a little more, and then a little more. In a week I went from not being able to taste anything to having about 60% back. I seemed to have leveled off for now, but I think it's just a bump in the road. Sweets still tastes pretty bad. I guess I could see that as a good thing.
Almost better than the taste returning is my saliva is coming back too. The glands on the right side were killed during treatment. I guess the left side has figured that out and is trying to make up the difference. I'd say I'm about 60% in that area as well. I can eat most things without much aid from water or milk.I'm looking forward to warm weather. We've had temps here below 0 for over a week. I'm feeling so good that I just want to get out and go, but the cold is putting a damper on things. As you can see by the picture, I'm down to fighting weight. Dropping 65 pounds not only makes you feel better, it comes with perks. All my riding gear was too big, so I got to buy all new. The same with all my pants. Only about half my shirts were deemed too big, so we saved some money there.
Joyce is traveling more. That's good and bad. The bad part is that she'll be gone more. The good part is that sometimes I'll be able to go with her. Soon I hope to go to Amsterdam and Germany. Maybe even China. I'm bound and determined to make up for all the time lost last year.
I'm still in some pain, but it seems trivial in comparison. Dr. Ferguson didn't seem worried about it. I'm almost off the pain pills. I've got 17 days left according to the schedule. It's been pretty painless. Dr. Cirella has me stepping down real slow, every 4th day I take away one pill. It's getting to the point where I forget to take them. That screws up my schedule, but it's a good sign.
It's no coincidence that I'm feeling better as I'm coming off the pills. It makes me realize how much I was taking before. How did I function?
Take care. With any luck I'll be riding soon.
One Year Later
First I'd like to say that I probably wouldn't be alive today if it wasn't for Joyce. Her strength and commitment is amazing. Being a care giver has to be one of the hardest jobs on the planet.
On with the show. It's been a year since I got the call. I'm a little worse for wear, but alive and kicking. We're 7 months post-treatment and I'm feeling pretty good. Dr. Ferguson commented that I was doing remarkably well.
I've gained back 15 pounds, but all my new clothes still fit, so that's good. My ability to taste comes and goes, but it's not nearly as bad as it was. I'm off all the pain killers and am sleeping pretty well.
Now, it's time to work on getting some strength back. We hit golf balls for about a half an hour the other day, then painted the bedroom. The next day, I thought I was going to die. My ENT (Dr. Ferguson) thought that was funny. He told me to start with a few par 3's and work my way up. Don't push it!
It's time to get on with things and try to put this to bed for a while. Unless something bad happens, this will be my last entry for a while. I have a scan in June, but until then, I'm not going to worry about it.
Thanks to everyone for their support. You have no idea how much it helped me. If you're a patient or care giver and have questions, please, don't hesitate to email me. I'll still be happy to answer them.
Time to go ride, play golf and travel, but most of all, spend time with Joyce.
Last night we sat out and watched the show put on by Cherry Valley. From now on, I'll look at the 4th of July as a birthday of sorts. I hope to see many more.
Anyway, I had my six month follow-up PET scan and it came back OK. I have to say, I was worried about this one. Will the cancer come back? If so when? Where? All stuff that will keep you awake at night. It's always in the back of my mind, but I'm learning to deal with it.
For the most part I feel great. There are a few lingering after effects, that I'll have to deal with. My ability to taste comes and goes, and I still can't taste sweet. Not being able to enjoy ice cream sucks, but it's a small price to pay. Over all, my doctors think I'm doing remarkably well. Dr. Bryan seemed a little shocked when I told him what all I'd been doing.
There's not really much more to tell. Aside from my monthly visits to Dr. Ferguson, life is pretty much back to normal.
As always, feel free to email me. I'm more than happy to answer any questions you might have.
Joyce and I in the Netherlands. Vacation photos here.
I had a PET in June and it was clear. My ENT is now just seeing me every 3 months and appointments with my MO and RO are stretching out to 8 months. It's kind of scary, but I guess it's all part of it.
As with my last update, I'm feeling great and having the time of my life!
It's been 3 years since the end of my treatment. I just had my 3 year PET/CT. As far as my doctors can tell I'm still cancer free. (knock wood). Dr. Bryan said come back in 1 year.
Again, I'm feeling great and having the time of my life!
Another round of check ups and I still (knock on wood) seem to be OK. That said, the after effects of radiation are starting to build. Neck and jaw discomfort is increasing, but it's still nothing to complain about. Also, I'd been having a little trouble swallowing so I had a barium swallow test. All appeared normal, but I've got scar tissue building in my esophagus. It's no big deal yet.
I've decided not to have anymore PET scans unless one of my docs thinks something's up. The anticipation of the event and then waiting to get the results is pure torture.