First diagnosed: 10 August 2010 With Throat cancer
19 Sept 2010
My treatment is scheduled to be as follows: (5 days a week of radiation for 7 weeks) (2 days of chemo) (21 days off) (2 days of chemo) (21 days off) (2 days of chemo).
20 Sept 2010
Today I had my teeth pulled.
27 Sept 2010
It has now been 1 wk since the pulling of my teeth. I consider myself as a person that can handle pain pretty well, but this is a different type of pain because it really hurts and I mean all the time. Unless you medicate for it, it is always there. Picture the worst tooth ache pain you can think of and then multiply it by 15. After 1 wk it has subsided to about ½ of what it started out as. This is something that they do not tell you. So, if you should ever have to have anything like this done, ask a lot of questions, from a lot of different sources, both medical and from the laymen side, which are from the people that are or have gone through things like this. I have learned that the internet is a world of information. If used right it can answer a lot of unanswered questions. If it were not for vicodin and ibuprofen I would have had second thoughts about what I had just had done. They don’t get rid of all the pain, but they make it tolerable. I was once told by an old friend and medical doctor that sometimes the cure is worse than the cause. After surgery, I was told that I would need to look after my remaining teeth and gums diligently to keep them healthy and even if I do, that the Radiation could still damage them to the point of having problems down the road because of the loss of blood supply to them. So after checking out all of the resources available to me, I’m on the road to good oral hygiene. Since the start of this, with a lot help from my family, friends and professional people my eating habits had to be changed to a more healthy diet. I’m now juicing vegetables, making smoothies and eating a variety of baby foods. I can swallow ok, but chewing with your front teeth is difficult and puts a different type of a strain on your jaw that I’m not use to. Staying hydrated is also an important part of this. They recommend 10-12 8 oz glasses of fluids per day, along with 80 grams of protein (12 oz of meat, if I could chew it) and 2200 calories.
I was told that without a feeding tube being put in, they would not do the treatment. All that I have read about the use of the feeding tube along with my treatment are very positive.
27 Oct 2010
Well a lot has happened since the start of my treatment. On Oct 5th I started my first Radiation treatment. My first two days of Chemo was on October 5 & 6. My feeding tube was put in place on Oct 7th. I have lost 12lbs that I didn’t have to loose in the first place. I ended up in the Emergency Room late Saturday night Oct 9th with shortness of breath and pains around my chest area, I was retaining fluid in my feet and I had developed a pain in my left calf but when I would walk around it would go away. So, they ran tests and found me to be dehydrated and constipated. First off I got 2 enemas, then 2 bags of saline. After a few hours I felt great again, so home we went for the weekend. At this time my taste buds have really changed and I had lost my taste for food. I used the tube and drank what I could. The next Mon-Tue-Wed I went back to get my Radiation. After Wednesday’s treatment I stopped at chemo, and told them I was still not feeling right. The nurse at that time told me that in my present condition I was not treatable and needed to go down to Emergency, which we did. Because of my shortness of breath they ran a CT scan and found that I had developed blood clots on both sides of my lungs and I was still dehydrated. They admitted me into the Hospital. I was admitted where they gave me more saline and an IV that would thin my blood. At this time I was starting to develop a sore throat. I was told in the beginning that I should not feel any effects until the third week, and I still haven’t finished my second week yet. By Friday I was feeling pretty good again, and needed to make a couple of big decisions. The first was to finally accept that if I was going to get through this I needed to do it their way. Back when I first had my teeth pulled I should have started my new diet of getting lots of fluids and calories. At which time I was juicing and doing fruit smoothies, but with the loss of appetite and taste I could not keep up with what I needed to do. Now I am totally dependent on my feeding tube. I’m getting around 2400 calories and 96oz of fluids per day, and have gained back about 6lbs plus I really feel pretty good now. They said the more water I can take, the more protection for my kidneys. I have broken down my feedings to 5 times, which take about 20+minutes, I allow 2hours in between the next feeding. I like the hand syringe because it allows me to regulate the flow. Each feeding consists of 8 oz of nutrition and 10 oz of water, which puts me well into a 12hour day. So I start my day at 6am. I have found it works better for me to warm my liquids before putting them into my feeding tube. I am giving myself blood thinning shots once a day. I’m going to the VA Ann Arbor Hospital for my treatments. You could not ask for better doctors, nurses, and general staff members. The fellow patients and the attitude in this Hospital are so positive. Being on a set schedule you see a lot of the same guys, it’s almost like coming home to family. They have a community living center that they offer to you as long as there are openings, as of which there were none at time of my release on Friday. I would be put on a list and did not know when I would be called. Even though it is some what of a drive every day, with the kindness of family and friends for the short time that I am there for my treatment it is all worth it, because it allows me to change my environment and to get my mind out of my body and nothing beats being at home. I am over the hump now. I just finished my fourth week, with 3 to go. I received my second 2 days of chemo, on Oct 26th&27th, and because I was ready this time I came through it a lot better. They say that they are still not done kicking my butt and the worst is yet to come. If the blood work comes back ok next week I will get my last 2 Chemo’s on Nov 16th&17th. My last Radiation is scheduled on the24th of Nov. The Chemo wears you down a little, but with a nap here and there I bounce back pretty well. The Chemo department gives you meds to counteract the effects of the Chemo, and they do a good job. They said that the Chemo will peak in about 12 days after treatment. I’m not sure what the Radiation does to me I do not feel tired after getting it, they also have me on some meds. My body has adjusted to the pulling of my teeth and the feeding tube by now. The only issues that I have now are raw sores on the roof of my mouth, but they seem to heal then move to other locations. The other issue is occasional dry mouth, because they are slowly shutting down my salutatory glands. We have purchased over the counter Biotene Moisturizing Mouth Spray to help with my dry mouth symptoms. Also I’m using an old home remedy of rinsing and gargling with warm salt water, don’t know if it is helping, but it seems to relieve some of the discomfort. All in all things are going forward moment by moment. Mentally I am able to leave my body, which allows me to do outside projects and activities. For now, as the song says “I’m not as good as I once was, but I’m good once as I ever was”.
13 Nov 2010
Some more time and treatments have passed. Next week I have 5 Radiations, Mon-Fri and 2 Chemos Tues& wed. Then the following week I have 3 days Radiations left, and that is the end of my treatment. So starting Thanksgiving Day that should be the start of my recovery.
29 Nov 2010
A lot has happened since my last report on the 13th of Nov. Chemo went good on 16th & 17th, along with the radiation that week. I felt great all week end. Monday treatment went well. Tuesday morning I got up ready for my treatment, and with in minutes after taking my meds and tube feeding it all came up. With only 2 treatments left I was not quitting now. So off we went for my treatment, got it and from there went to the Emergency Room . They gave me an IV to rehydrate me. I started to feel a little better, so they sent me home. When I got home went to bed without any feedings the rest of that day. Next morning I got up, did not feel the best, but still took my meds and tube feeding and off we went for my last Radiation treatment. Prior to going in for my treatment, while I’m sitting in a wheel chair they brought me my certificate congratulating me on completing my treatment, it was the worst treatment of all of them, I could not stop shaking, but I made it. From there it was back to the Emergency Room and then into the Hospital for the next 4 days to get me back on track. After a couple of days of fluids I started in on small amounts tube feeding again. On Friday I noticed my hand with the IV in it was starting to swell up and hurt, so I had them pull it out and leave it out. At that point I started to do small amounts of fluids and feeding through my tube again. I came home on Sunday the 28th and also noticed that the swelling had finally gone away in my hand. I don’t know why I have these set backs. At this point in time I’ve lost about 20 lbs. I know that the Chemo medicine stays in my system for 24 to 48 hrs and the side effects last for around 12 days. On the days I get my Chemo and Radiation I feel fine. Maybe figuring the Chemo side effects and the week ends and holiday breaks from the Radiation throws everything off balance. They say the radiation will stay in my system and keep working for 30 days or so after my last Radiation treatment and every week after I will feel better. You can’t really compare this week to last week, but I have to admit I do indeed feel a lot better. The next dates to remember are 15 Dec 2010 final check in with the Chemo department to insure my blood is ok. Then on 12 Jan 2011 check in with Radiation and ENT clinic to see what everything looks like.
17 Jan 2011
A lot of time has passed since my last update. Things have been going well, mentally and physically and medically the body is moving slowly. Everything takes longer to heal now because the body is run down and is trying to recover from all the poisons that were put into it. Now my body says lets see if we can repair the damage that was done. Another thing I was told by my old friend and medical doctor that once they ran a test on 10 healthy Interns and they put them in bed for a month with no meds, and it took their bodies a year to recover. So, even as slow as it is going, my old body, after all it has been through the last 5 months is doing a pretty good job of cleaning up the mess. I don’t know if it works or not, but years ago I had a stiff neck and got a necklace that was made of little magnets, it seemed to help. Basically if you have iron in your blood, the area where the magnet is will circulate the blood faster and makes that area warm. I guess it is like a heating pad, but they said the magnets penetrated deeper. So I thought it could not hurt anything and maybe just might help the healing process, and the area around my neck is nice and warm, if nothing else I know that there is iron in my blood. A couple of weeks ago I managed to get a small taste of the intestinal flu from someone. I had to put my working on getting healthy on hold for a few days, but got back on track right away. Basically I’m feeding 5 times a day at 3 hr intervals. Which consist of an 8 oz can of nourishment and 4 oz’s of water. I am still not able to eat, but my swallowing liquid is getting better. My throat is still swollen and I feel like there is a knot in the back of my throat. I have an issue with mucus that is deep in my throat that keeps wanting to come up, which makes it also hard to swallow. When my mouth and throat are moist I have no sore throat symptoms, if they dry out then my throat becomes scratchy and sore. I remembered what we did years ago when you didn’t feel good was to drink Vernor’s Ginger ale. I can sip small amounts of it when my mouth is dry and that seems to coat my mouth and throat which relieves the sore feeling. It goes down pretty good and also helps cut the mucus and that in itself is a big plus. My taste buds are far from coming back if they come back at all. I can taste just the very beginning of the Vernor’s, but there is no after taste. They said that some of my foods may not taste as they did before, at this point it doesn’t matter I just want to eat again. Who knows maybe I will acquire a taste for things I’ve never had before. On the 12th of this month I went in for my check up at the ENT clinic, where they put the scope down my throat to see what every thing looked like. They where very pleased, they said the lump on the back of my tongue was gone and everything looked good, also the lump on my right Lymphoid is getting smaller too. The other good news is that my Kidneys made it through the treatment. So with the help of family and all the prayers that people have said for me, the Doctors, Nurses and technicians with their God given talents, maybe I just might get through this. Again I have to say that the care I have received from the Ann Arbor VA is second to none. My next major step is on the 24th of Feb when I will go back to the VA and they will do a PET Scan and light me up to see if there is any cancer in my throat or anywhere else in my body. Day by day things are getting better. If anything news worthy happens before then I will be back.
16 Mar 2011
Since my last entry a lot has happened. First of all my being able to eat is slowly coming back, how ever it is not a pleasurable experience yet. My saliva glands are not as efficient as they were before and I am not able to lubricate my food while I’m chewing it, by the time I finish getting the flavor out of it, it is all dried out and without taking a drink of something, I can’t swallow it. My taste is coming back in different degrees some foods taste as they did before, while others are bland or bitter. Right now my diet consist of mainly chicken broth, oatmeal and poached eggs which they go down pretty well. Sometimes I will take small bites of broiled fish, shrimp and chicken and they are not too bad going down. I will try bites of other foods now and then, but a lot of times the texture of them turns me off from eating them. My main source of nutrition is still the Two Cal supplement that I have been taking. On the 24th of Feb they did my PET scan, and I got my results back at the end of Feb. They did what they said they were going to do, and that was to remove the lump behind my tongue. There are a couple of spots on my lungs that were there in the 1st PET scan that doesn’t appear to have changed much. They said that the type of cancer I have is very fast growing and they are thinking that it might just be scar tissue, so they are going to keep an eye on it for now and check it again with the next PET scan in June. They also treated my right Lymphoid Gland at the same time, after the treatment the gland was a little swollen and the only way to make sure that the cancer was gone is to operate and remove the gland. So on March 15th they cut my throat from my Adams Apple to the back side of my right ear. Today is March 18th the results came back and the gland was full of dead cancer cells. The surgeon said everything looked good and that he is very pleased with the way that things turned out. Also the feeding tube came out today (that was fun). I am going to be discharged from the hospital today and will come back in about 2 weeks to have my stitches removed and to see how I am healing. The surgeon said it will take about a month and a half for my surgery to heal. So I will be doing no heavy lifting and taking it easy for awhile. That’s it for now. I’ll be back when there is more to talk about.
3 Apr 2011
This session of my writing of which will be done over a number of days, as the rest of my writings have been, will be a summary of my medical, physical and how I feel about things after what I have gone through these past 6 months. First a little bit about me. In a couple of weeks I will be 67 and this is the first time that I have ever had any thing seriously wrong with me. I hardly get colds, and if I do I shake them quickly. With in reason I can still do what I did when I was 20. At the time of my being diagnosed with cancer I had been doing my trade for 50 yrs. A friend of my once said that there isn’t an ill wind that doesn’t blow someone some good, so maybe it was time for me to retire, and I really don’t miss it, so I believe it was time. I am not sure how people are finding my blog, but the easiest way for me is to go to our web site greatlakesmarinas.com and scroll down and click on Dads journey. This blog is put together with the help of my wife and daughter. They do the proof reading to make sure the grammar and spelling are correct. My son who put this web site together for me does the posting. I am a one and a half to a two finger typer. Besides boating I enjoy Golf. On a scale of 1 to 10 mentally and physically I feel like an 11. Medically the jury is still out. I realize that I have come a long way since my last Radiation treatment on 24 November 2011, which was the last time they tried killing me, not to mention the cutting of my throat. But seriously I was told that due to the location of my Cancer that it was one of the most difficult to treat. Again I have to say that I have had the best of treatment and care from the Ann Arbor VA and the University of Michigan, bar none. I still have issues that I do not know if they will go away or if they will get a little better with time, or this is as good as it gets. I wake every morning and I am hoarse, sometimes to the point that I cannot hardly talk. After awhile my voice starts to return, but the hoarseness never completely goes away, they say my throat is clear. My hearing is all over the board. I think it has to do with pitch and clarity. Sometimes I can barely hear my cell phone when it is in my pocket, but if someone nicks a tree limb 150 yards with a golf ball I can hear it as clear as day. Watching TV, action scenes , volume set at 15-16, people just talking, volume set at 26-28,and I miss half the dialog. I had a jack put in my TV for a head set. I now listen at a level of 3 and hear it all with out missing any dialog. When I hear people talk their normal voice sounds of a higher pitch. People with a low pitch sound as if they are speaking through an old fashioned megaphone. The only way that I can describe people with high pitched voices are their voices remind me of voices that you would hear in cartoons. I also in the past had the feeling that my ears were filled with water or plugged, on top of the odd sounds of the voices they were muffled too. I hear better out of my right ear and that is the side where they cut me. The stitches are now out from my surgery and the healing process is going well. The only damage that was done while removing the Lymphoid Gland was they had to stretch the nerve that was next to it so they could perform the operation. Prior to surgery the surgeon told me of things that might happen as the result of the operation, such as I could end up with a stiff neck or stiff shoulder at different degrees and would have to go to physical therapy or even a heart attack. Well I did not get any of these, the only things that happened is where my incision is, it is tight and tender, also the right side of my face feels like it has been shot with Novocain and a little bit of a knot on the right side of my throat when I swallow, but they are all getting better each day. Off and on I have developed a thrush condition or yeast infection, which they say can be caused by my cancer condition. Also awhile back I noticed that I had a heavy coating on my tongue that was beige in color at the same time that I was being treated for the thrush condition. So I figured that it was the thrush they were treating. So I did the nystatin oral for a period of time and then the tablet another period of time, and they said it was gone, which was around Thanks giving of last year, at which time I was tube feeding. On Jan 30th I stopped tube feeding and started doing my 2cal by mouth. While I was in for this past surgery they said thrush was back, so I went back on the nystatin orally for 2 weeks, and still my tongue was coated. So then I tried the tablets for 1 week, same thing. As an alternative I did both and also found an article where they said that peroxide worked better than nystatin, so for 3-4 days I did all 3 and the condition of my tongue did not change. I went to my local VA Clinic and they told me that the thrush was gone and to stop all meds and give the body a chance to heal it’s self. All of the time of not being able to swallow or taste has been attributed to the thrush. It has been 3 days since I stopped my meds and everything is still the same, my tongue is getting more coated and my taste is gone. I never got any thrush that I could tell, in my mouth, it just seemed to be in my throat and the only thing that looked like thrush in my mouth was my tongue. All the while I was being treated for thrush I would ask if the 2cal could be causing the coating on my tongue, I never did get a definite answer other than it could be and when I started eating it would go away. Well 2cal is the same color as nystatin and thrush and it sticks like glue if it dries on your clothes and sets in along period of time good luck in getting it out and on hard surfaces it comes off like latex paint that has dried. So now I thinking that the 2cal is the lump I feel on the back of my tongue making it hard to swallow and also causing my lack of taste. It seems that every can of 2cal adds to the coating. I have been brushing and scraping my tongue, but nothing is coming off and what about the back of my tongue that I cannot reach? I got to thinking of things that were safe for me to put in my mouth. I remembered the past I had used white distilled vinegar to clean and help to remove things. So I took my morning 2cal can after I drank it and smeared some 2cal on the top and let it set all day to dry hard. Tonight I mixed up some vinegar 1 to 1 and put some on the dried 2cal and let it set for maybe 30 seconds and it came off on my finger when I touched it. I figured what do I have to loose and mixed up a small amount to try. Well it worked, it broke some loose with out any discomfort. I did second treatment a few hours later and got a little burning in some parts of my mouth and on my tongue where there was no coating, so now I need to determine if the treatments are too close or too strong, the only thing I know is that it works. We are now a few days later and the soar spots in my mouth are just about gone. The next morning I did a 2 parts water to 1 part vinegar mixture, first off it still burned my mouth and really didn’t cut the coating very well, so I’ve scrapped that treatment. White distilled vinegar is used orally, but in a much diluted form, which will do me no good. We still do not know what is causing the coating, so we are going to work on a more balanced diet to see if it can be cured from the inside out. The Birthday has come and gone, so the next big date is the 6th of June for a CAT SCAN, see you then. Also today my blood thinning shots are done. A thank you goes out to the people in the coag department for keeping that part of my treatment in check. And thanks to Jay for your interest
3 Jul 2011
I didn’t mean to take so long to get back to posting what has been going on with my life, but I have been so busy living it, that I forgot to inform the people that maybe following my progress, and I do apologize for it. First off my CAT SCAN on the 6th of Jun came back and it was negative, so for now I am clean and they said nothing has changed and all looks good. My next test is the 1st of Aug. My medical part from 1 to 10 is also now an 11. I can now literally eat any thing from soup to nuts. I have adapted to eating with the 12 front teeth I have left 6 up and 6 down. The only things I have trouble eating are things that require me to produce a fair amount of saliva, they tend to get a little pasty and I have to wash them down with something to drink. Which brings me to this part, I now have acquired a strong taste for Cola’s and Root Beer, because they seem to make everything go down easily and I really like the taste of them. Before all this happened I was not what you would call a big pop drinker, maybe with pizza or with something that pop would go good with. The calories I can use, but all the sugars I don’t know about. When tested for sugar I have always been on the low side and being that I eat very little sweets now, maybe the pop will balance out my sugar, not sure how it will effect my teeth. I also love popcorn, it is my # 1 snack, I eat the light kind. A friend of mine once said that he didn’t eat certain foods because he did not like the texture of them. I never understood what he meant until now. If I eat white bread it will turn into dough in my mouth, because it will not hold its body. I can eat small amounts of whole grain breads, because they will hold their body to some extent. Anything that I can chew, if the pieces only get smaller I can either swallow on their own or drink something to wash it down. Two of my favorite things that I just loved to eat any chance I could was ice cream and carrot cake, but because of their texture I don’t enjoy eating them, maybe some day I will eat them again. I was never aware before how the temperature of food effects your eating as much as it does now. I eat slower than I did before, so I take smaller portions now, because hot foods will cool down before I can eat them and they don’t taste as good as when they were hot, so some times I have to warm them up to finish eating them, because the taste and texture have changed. My taste buds are getting better; they change sometimes from day to day and sometimes from morning to night. Fruits still seem to have a little bitter taste to them, but not as bad as before. I am now down to 1 can of TwoCal a day. I take it first thing in the morning. It is like eating a 475 calorie breakfast with lots of vitamins and minerals. With my last check up on Jun 6th I had gained back about half of the 22 lbs that I lost, and since I’ve been eating more whole foods now I hope to gain back more. Also I had 2 small white spots of thrush in my throat so they put me on 2 weeks of nystatin 4 times a day to get rid of it, hopefully when I go back in August it will be gone. Also my esophagus was inflamed and they put me on 6 months of acid reflex tablets. The mystery of the coating on my tongue is no more thanks to my dentist. It seems that it is called white hairy tongue (lingua villosa alba). Quote from a medical book that my dentist has. (Although a fungous and an allergic origin have been suggested, it is probably caused by dehydration, poor oral hygiene, and physiologic xerostomia of old age. In some instances, there is brown or black discoloration of the “hair”. This is usually due to some exogenous pigment in foods and medicaments (black hairy tongue). Moisture is usually what makes things grow, but not in this case with dry mouth the hairs grow longer. And basically from the end of January to the middle of May the only thing I drank was TwoCal along with some water and ginger ale. Being that the TwoCal is able to leave a coating effect, along with the hairs on my tongue getting longer; my tongue looked like it had a light coating of beige frosting on it. Now that I’m eating whole foods again usually the last thing that I eat or drink is what color my tongue is. The front part of my tongue is starting to look more normal, because of using it to eat with. Brushing and scraping my tongue helps out, however I cannot get to the back part of my tongue so it is still heavily coated. Until I stop having dry mouth and a dry tongue, especially in the morning I will have to deal with the heavy coating at the back of my tongue. Everyone has these hairs on their tongue, only they are shorter. Throughout the day I chew sugarless gum and that helps to keep my mouth moist. I am still hoarse, don’t know if this is my new voice or not, time will tell. Within reason I am able to do what I did before I started my treatment. Now I find myself taking little power naps throughout the day to keep me going, and go is what I do. My life has never been as full and positive as it is now. At this time I would like to thank the other people that have impressed me with their positive attitudes at the VA, they are the people who set up my appointments, called to see if I was ok after a procedure, filled my prescriptions, answered my many questions, the people that kept my hospital room clean, and all the people that in one way or another whether I have met them or not, touched my life while I am going through this.
P.S. There is someone out there with a blog Wongdr that said they may have what I have and I would like to know how to contact them to wish them well and to see how they are doing.
13 Dec 2011
It’s time once again for another progress report. I believe the most important news is the results of my CT scan on the 5th of December. I received a clean bill of health, everything came back good. The two little spots on my lungs have not changed any since the start of my treatment and yesterday they went down my throat with a scope and they said that everything looked good also. It was really neat, they had a monitor and I was able to watch and see everything along with them. On the 22nd of November I went in to have some more of my Papilloma removed. Usually after about 2 to 3 weeks my voice will get stronger and clear up, however this time it did not. I was originally told that the radiation would have no effect on my vocal cords. Since 1994 I have had 6 or more cleanings on my vocal cords for Papilloma, maybe the scar tissue is starting to build up and the cords are not as pliable as they once where. Their main concern is to keep my air passage open, so from now on, if and when it becomes a health issue, they will do another cleaning. I have a raspy voice and have probably lost about 25 percent of my volume, but like everything else I will deal with it and accept it. I have to see the ENT clinic on the 30th of January 2012 and I will see what they have to say about it. One of the things I have accepted is the loss of most of my teeth that were needed to be pulled to do my treatment. With an occasional bite of the inside of my lower lip area or the tip of my tongue I have adapted and I am physically able to chew anything that I like with my remaining 12 front teeth, of coarse smaller bites are a must, so I have decided not to get any type of false teeth to take the place of my missing teeth, I am fine without them and it is one less thing that I have to adapt to and take care of. Since the 1st part of October I have stopped taking any TwoCal. I’ve gained back about two thirds of my original weight and feel very good, along with the fact that my old cloths are fitting me again. My Radiation Doctor said that your taste buds are at the back of your tongue, and being that is where my cancer was, that is the area that is healing and trying to get back to where it was. For the most part my taste buds have returned. Except for tomato sauces and citrus fruits, some still taste bitter to me, while others are ok. I am starting to like carrot cake again, depending on who makes it, and the jury is still out to lunch on ice cream. The numbness on the right side of my neck is slowly going away and the feeling is starting to come back on the top part of my ear now. My saliva glands are working a little better now. Some of the foods I needed to take a drink with in order to swallow them are going down ok now without having to take a drink to get them down. With every week that passes things are getting better. I am now clean after 1 year and on a scale of 1 to 10 I am now pushing about a 13. I live my life now one day at a time, so I am enjoying each day to its fullest. I have no bad days, some are just better than others. I will not allow any negatives in my life, only positives. Being retired now allows me the opportunity to create my own environment, so I try to fill up my day with as many positive things that I can, whether they are for me or for someone else. I now have a second lease on life, and I am very thankful for it, I don’t know how long it will last so I am taking full advantage of it. When something like this happens to you, you get a chance to reflect back on your life and when I look back, I can say that I have had a great ride, and would change nothing, because if I did I would not be where I am today, and I like where I am. My appointments now are every 2 months, alternating between Radiation and the ENT clinic. My Radiation Doctor said that they would do another CT scan in about a year. I am very pleased to say for now, that I am one of the positive stats for cancer treatment .I do check my blog periodically, so if there is anyone who reads this and would like to comment or correspond, please feel free to do so. I will keep this blog active and as news worthy things occur about my condition, I will see to it that they are posted. For those of you that have taken the time out of your life to read this I hope that it has helped you or someone else in some way. Thank You, Denny.
13 Dec 2011
It’s time once again for another progress report. I believe the most important news is the results of my CT scan on the 5th of December. I received a clean bill of health, everything came back good. The two little spots on my lungs have not changed any since the start of my treatment and yesterday they went down my throat with a scope and they said that everything looked good also. It was really neat, they had a monitor and I was able to watch and see everything along with them. On the 22nd of November I went in to have some more of my Papilloma removed. Usually after about 2 to 3 weeks my voice will get stronger and clear up, however this time it did not. I was originally told that the radiation would have no effect on my vocal cords. Since 1994 I have had 6 or more cleanings on my vocal cords for Papilloma, maybe the scar tissue is starting to build up and the cords are not as pliable as they once where. Their main concern is to keep my air passage open, so from now on, if and when it becomes a health issue, they will do another cleaning. I have a raspy voice and have probably lost about 25 percent of my volume, but like everything else I will deal with it and accept it. I have to see the ENT clinic on the 30th of January 2012 and I will see what they have to say about it. One of the things I have accepted is the loss of most of my teeth that were needed to be pulled to do my treatment. With an occasional bite of the inside of my lower lip area or the tip of my tongue I have adapted and I am physically able to chew anything that I like with my remaining 12 front teeth, of coarse smaller bites are a must, so I have decided not to get any type of false teeth to take the place of my missing teeth, I am fine without them and it is one less thing that I have to adapt to and take care of. Since the 1st part of October I have stopped taking any TwoCal. I’ve gained back about two thirds of my original weight and feel very good, along with the fact that my old cloths are fitting me again. My Radiation Doctor said that your taste buds are at the back of your tongue, and being that is where my cancer was, that is the area that is healing and trying to get back to where it was. For the most part my taste buds have returned. Except for tomato sauces and citrus fruits, some still taste bitter to me, while others are ok. I am starting to like carrot cake again, depending on who makes it, and the jury is still out to lunch on ice cream. The numbness on the right side of my neck is slowly going away and the feeling is starting to come back on the top part of my ear now. My saliva glands are working a little better now. Some of the foods I needed to take a drink with in order to swallow them are going down ok now without having to take a drink to get them down. With every week that passes things are getting better. I am now clean after 1 year and on a scale of 1 to 10 I am now pushing about a 13. I live my life now one day at a time, so I am enjoying each day to its fullest. I have no bad days, some are just better than others. I will not allow any negatives in my life, only positives. Being retired now allows me the opportunity to create my own environment, so I try to fill up my day with as many positive things that I can, whether they are for me or for someone else. I now have a second lease on life, and I am very thankful for it, I don’t know how long it will last so I am taking full advantage of it. When something like this happens to you, you get a chance to reflect back on your life and when I look back, I can say that I have had a great ride, and would change nothing, because if I did I would not be where I am today, and I like where I am. My appointments now are every 2 months, alternating between Radiation and the ENT clinic. My Radiation Doctor said that they would do another CT scan in about a year. I am very pleased to say for now, that I am one of the positive stats for cancer treatment .I do check my blog periodically, so if there is anyone who reads this and would like to comment or correspond, please feel free to do so. I will keep this blog active and as news worthy things occur about my condition, I will see to it that they are posted. For those of you that have taken the time out of your life to read this I hope that it has helped you or someone else in some way. Thank You, Denny.
19 Dec 2012
It’s been a year since my
last up date. It is hard to believe that
much time has gone by. But when your life is full of things that make you feel
good, time goes by quickly. I am now clean for 2 years. My saliva gland in the
front under my tongue is working great, the rear ones do not appear to be
working as good as before my treatment. I still tend to get dry mouth on the
roof of my mouth and in my throat, usually in the morning when I wake up or
talk for a long period of time without drinking something. Also in the same areas I will get heavy mucus
build up depending on what I drink, or do not breathe through my mouth for long
periods of time. I can pretty well eat without needing to wash my food down.
Every once in awhile things will get stuck and all I need to do is cough and
rearrange the food, swallow, and it will go down. With some dryer things it is
better if I drink while eating them. But usually there is not a problem eating
now that my front saliva gland is working. I am still numb on the right side of
my neck, between my ear and chin. I am about 4 lbs. short of my original weight
when I started my treatment. I feel that all of my lost strength has returned
along with my high level of energy. I still feel that I am having one great
ride in my life, and that bump in my road was not all that bad. The mind is so
magnificent, it lets you feel and remember the good and has a way of blocking
out the bad. My hearing is just old age, and I have lost my ability to hear
high pitched sounds. With my hearing aids it is somewhat better, when I feel
the need to wear them. I am not sure of the exact words that my new found
friend Larry said, but I believe it was, not to think about what is broke, but
what you have left to work with. So that is what I am doing, life is one
adjustment after another and how well you adjust is how well you will survive.
Remember life is like the game of golf, if you put any negative thoughts in to
your shots, you will ruin them. Thank you again to those of you that have spent
some time here with me, I will be back again before you know it. Denny.
14 Sept 2014
14 Jul 2015
2 Dec 2013
Well, here
we are again another year has passed. I went to the Radiation Department at the
V A Hospital in Ann Arbor today for my check up. They went down my throat, by
way of my nose with a camera to get a look see, and take some pictures. After
they were done, we viewed the pictures and they explained to me what we were
looking at. They were very pleased with how everything looked and said that all
is good. I am now 3 years cancer free. I asked about my rear saliva glands that
are still not much better than they were a year ago. I was told that if they
haven’t come back in a couple of years or so, they would not. I may have lost
most of the function of my rear saliva glands, but my taste buds are back 100%
and the doctors and I are very happy about that. I still have the dryness and
thick mucus in the back of my throat, but have learned how to deal with it. The
numbness in my neck doesn’t seem to be much better either, so be it. I have
adjusted to eating with my 12 front teeth, and do it very well, but I am not
very fast at it. Now I am doing what we were always taught, but never did, was
to take small bites and chew it well. I am also wearing flat spots on them
because they now do it all. There doesn’t seem to be any immediate concern,
time will tell. However it is kind of
neat to have only 12 teeth to take care of, and believe me I do, they are all I
have left and I do not intend to lose them.
My ice cream issue has come down to this, I don’t like anything really
cold, no matter what it is. Whether this is from my treatment or just me that I
don’t know. All I do know is that I have
adjusted to it. I like the taste of what I call real ice cream, so I will let
it melt a little and that way it is not quite so cold. As far as soft ice
cream, I don’t really care for it, and I do not put ice in anything. My weight
has reached a plateau of about 2lbs below where I started from; maybe this is
my new body. Mentally and physically I am on top of the world and loving the
ride. I thank God every day for my second life and my new attitude towards it.
I do not dwell on what is broke; I consider what I have left to work with. I
feel that from where this body was 3 years ago, it is in pretty good shape,
even if it does have a few broken parts. As I have said before this is and will
continue to be an ongoing post as things develop. If anyone has any further
interest, you can reach me at denny1944@bex.net.
Once again I am giving thanks to all that have taken time out of your lives to
read about my journey. Denny
6 May 2014
6 May 2014
Well here we are again.
On the 8th of April I went into dermatology and had two moles
removed, one on the right side of my forehead and the other on the upper part of
my right arm, they were biopsied the one on my right arm and was found to be
basal cell skin cancer. Then on the 11th of April I had another CT
scan, that came back finding a lump under each arm pit, and one on the inside
of the middle of my chest, but not in my lungs. Today I am going in to have an
ultra sound done and they will extract some of the lump with a needle and have
it biopsied.
9 May 2014
I received a call yesterday, the 9th of May about the results that came back from the biopsy. I was told that I had developed Mantle Cell Lymphoma, a rare type of cancer. They said that I needed to go and get some more blood work done so they could determine how to treat it. All that I have read so far is that it is not curable; it only goes into remission for a period of time. And that is determined by what stage you are in and how good your health is to handle the treatment. There are new drugs out that are supposed to have good results. I’ll be back when there is more to tell.
9 May 2014
I received a call yesterday, the 9th of May about the results that came back from the biopsy. I was told that I had developed Mantle Cell Lymphoma, a rare type of cancer. They said that I needed to go and get some more blood work done so they could determine how to treat it. All that I have read so far is that it is not curable; it only goes into remission for a period of time. And that is determined by what stage you are in and how good your health is to handle the treatment. There are new drugs out that are supposed to have good results. I’ll be back when there is more to tell.
4 June 2014
Went in today to get my PET scan. First they set me up with an IV. After that they had me drink a large cup of Barium. Then they gave me a dose of radioactive Glucose through my IV. Next I sat quietly in a small room for 1 hr. to let everything get into my system. And then into the scanner for 15min. to take pictures.On the 11th of June I get a CT scan, and then on the 19th of June another blood test and consultation as to the final results and treatment. I still feel that on a scale of 1 to 10 physically and mentally I am a 13. There are a lot of ways to look at my new situation. What I feel is in my corner is, I’ve been down this road before, and I should be able to anticipate the bumps. Also I will be able to have hands on comparison as to which one is more demanding on me. I still believe that what it is, is what it is. So with that being said ( yesterday is gone - I live for today and tomorrow isn’t here yet ). Be back soon.
Went in today to get my PET scan. First they set me up with an IV. After that they had me drink a large cup of Barium. Then they gave me a dose of radioactive Glucose through my IV. Next I sat quietly in a small room for 1 hr. to let everything get into my system. And then into the scanner for 15min. to take pictures.On the 11th of June I get a CT scan, and then on the 19th of June another blood test and consultation as to the final results and treatment. I still feel that on a scale of 1 to 10 physically and mentally I am a 13. There are a lot of ways to look at my new situation. What I feel is in my corner is, I’ve been down this road before, and I should be able to anticipate the bumps. Also I will be able to have hands on comparison as to which one is more demanding on me. I still believe that what it is, is what it is. So with that being said ( yesterday is gone - I live for today and tomorrow isn’t here yet ). Be back soon.
.
13 July 2014
The last couple of months or so I have been having trouble
with food getting caught in my throat. So on the 9th of July I went
in for a swallow test. They set me up next to this X-Ray machine and had me
swallow some white liquid, next with apple sauce in it, and then with a cookie.
They said that my Epiglottis (a little flapper valve that protects your wind
pipe when swallowing) had gotten stiff and food was getting caught up in it. I
was told that it could be a reaction from my Radiation treatments. Being that
my rear saliva glands are not working as they once did I now understand why I
am having trouble swallowing the mucus building up in my throat, so now I just
make sure that I wash everything down well. On the 10th and the 11th
was the start of my 12 treatments. On the 7th & 8th of Aug I will get my second set. I will get 2 days of Bendamustine and 1 day of
Rituxau. I am not sure of the side effects yet, I really haven’t had any that I
can attribute to my condition, other than liking to take naps. That may be just
old age kicking in, now that I am 70. On the 27th of June I went in for a bone
marrow biopsy. The results came back that the cancer is in the bone marrow. I
do not know if that has any effect on the treatment. I will get a blood draw on
the 17th of this month and a consultation on the 24th to
go over my vitals and treatment. L.B. a very dear friend of mine sent this to
me, which is where I am today. Denny.
"There comes a time
in your life, when you walk away from all the drama and people who create it.
You surround yourself
with people who make you laugh. Forget the bad, and focus on the good.
Love the people who
treat you right, pray for the ones who don't.
Life is too short to be anything
but happy.
Falling down is a part
of life, getting back up is living.
19 Aug 2014
19 Aug 2014
I had my 2nd two day dose of chemo on the 7th
& 8th of Aug. The only side effect that I have been having
is from the steroids that they give me to help with the reaction from the
chemo. I get a wired reaction and my energy level goes way up, and then after a
couple of days everything seems to go back to normal. I was told as I go deeper
into my treatment that I will feel more tired. They say that some of the side
effects of Mantle Cell Lymphoma may be diarrhea, nauseous, lack of appetite,
abdominal pain, night sweats, and weight loss. I cannot say that I truly have
had any strong or unpleasant experience with any of these symptoms, but I may
have had a very light confrontation with them, and definitely no lack of
appetite and my family can attest to that. I am on a 4 week cycle. 1st
wk. 2 days of treatment, 2nd wk. blood test, 3rd wk.
blood test, 4th wk. blood test & consultation. This has been set
up as a 6 month program. As before I am not looking forward to getting better
or not, I am just living my life to its fullest, one day at a time. The ill
wind that blows someone some good this time is, that I am glad to have gotten
both of my cancers at this point in my life, rather than when I was raising a
young family. See there is some positive in everything. Again I cannot say
enough about the high quality care that I am receiving from the Ann Arbor V.A.
and the University of Michigan staff. God willing they will put me back
together again for awhile. As things develop I’ll be back, Denny.
14 Sept 2014
Here I am again. I had my 2 chemo’s on the 4th
& 5th and all is well, no real side effects, except some
constipation, which they said is caused from the chemo. This time I did not
feel wired from the steroids, like I did in the previous treatments. They say
that the chemo will stay working in my body for 72hrs. I felt and the lumps
under my armpits are gone, and they said that was a good sign. I have what is
referred to as, (non Hodgkin’s Mantle Cell Lymphoma). It is in stage 4, because
it is in the bone marrow. I was told that there are 2 types, A and B. The
B-type has all of the bad symptoms and side effects and the A-type has none, or
very mild ones. And that is a plus in my favor. I have experienced little or no
reaction to neither the chemo nor the cancer; if I did not know that I had this
condition I would not know that I have it. My next treatment is on the 2nd
& 3rd of Oct. After that they said that they would test me
again. They said that my blood counts are low, and that it is due to the chemo.
I was told that there is nothing that I can eat or do to will increase the
levels. They said to pretend that I am on a Cruise and eat fatty foods, no 2%
milk-etc. So I just try to eat a balanced diet, along with anything else that
will put calories on me. The one thing that they stress is for me to drink a
lot of liquids, whether it is in the form of drink, food or fruit to help
protect my Kidneys. Sometimes this is hard for me, because I have never been
one to drink a lot of fluids. My physical and mental levels are both high and
positive; it’s all good, Denny.
15 Oct 2014
15 Oct 2014
Another treatment and another month have past. This time I did
feel some of the effects from the chemo, but nothing that a nap or a bottle of
Vernors Ginger Ale could not handle. My appetite is still as strong as ever,
and sometime just eating makes me feel better. The reaction from the chemo only
lasts for 3-4 days, after that it is as if there is nothing wrong. On the 22nd of this month I go in
for a CT/PET scan. Then on the following day I go in for another consultation.
Hopefully at that time they will tell me how the treatment is progressing. I
still have my weekly blood tests on the off weeks of my chemo. My next
scheduled treatments are on the 30th and the 31st of this
month. I’ll be back after my consultation.
4 Nov 2014
On the 23rd they received my tests results back.
It showed that some of the cells were gone, and some showed no difference, and
that there was no new growth. So the positive side is that the treatment
appears to be working, I do not know if this is the norm at this stage of my
treatment or not. They are concerned about my immune system being low; prior to
my treatment on Oct 30th, they had me get another blood test. My counts had
come up, so they gave me my treatment, and the next day on the 31st,
I received my second one. On the 12th of Nov. they have scheduled me
for a CT scan. Blood tests still the same, once a week with consultation on the
20th of this month. This month is supposed to be the last of my treatments.
They are scheduled for the 25th and the 26th. Again, the
side effects are still minimal, nothing that I cannot mentally over come. Month
by month the chemo will take a little more out of you. I have been blessed with
being able to resist the effects. No real bumps in the road, just a few pot
holes along the way. Be back when there is more to tell. Denny.
14 Jul 2015
I have some catching up to do on
my posting. Sorry for the delay. On the 6th of Jan. this year I had
a CT scan done and a blood draw and consultation on the 8th of Jan. everything
looked good and blood counts were coming up. They scheduled me for more blood
draws on the 4th of Feb. the 11th of Mar. and the 9th of
Apr. to include a consultation. At that time they said all of my blood counts
were looking good, and would schedule me for a PET scan in Jul. All is well,
including my recent PET scan test results from the 9th of July. All
of my blood counts are back to where they belong, and no new cells found. I
have not experienced any real issues in this cancer, so there are not a lot of
things that I can pass on. My next scheduled appointment is a blood draw on the
12th of Nov. with a consultation. I have people ask me, how are you feeling?
And I have to stop to think, why are they asking me this, and then I realize it
is because of my condition. So I tell them, if I felt any better, I don’t know
if I could handle the excitement. I know that it will return again someday, but
I am not going to sit around and wait for it, I have a lot of positive living
to do. So I surround myself with positive things and people, I don’t have any
time for negatives. That’s it for now.
Denny.
11 Feb 2016
As you can tell a lot of time has passed since my last post. At the end of Nov. 2015 I was 5years clean of my throat cancer. The Radiation Dept. has cut me loose, now I only see the ENT Clinic once a year.
My Lymphoma is still in check. I go in every 4 months for consultation and blood work, all of my blood counts are coming back normal. My energy levels are all up. I'm still living in my positive world, one day at a time. I guess that's it for now, I'll be back when there is more to tell. Again, if I can help in anyway please contact me. Be sure to leave me a way to contact you. Denny.
21 Jan 2017
Here I am again, almost 1 year later. Everything is great, just living the dream, one positive day at a time. Blood counts are good, energy level is high, and thankful for every day that comes my way. Once again, if I can help in anyway please contact me. Be sure to leave me a way to contact you. Denny.
20 Jun 2017
No new changes. As far as the cancers go, everything is good on that end. At 75 now, things don't work as well as they did at 20. However I still am holding on to my positive attitude, I don't dwell on what is broke, I consider what I have left to work with, and make it work. Appetite is good, energy levels are good, and still living the dream. Again as always, if you read this, and I can help in any way, please leave me a way to contact you. Denny.
7 Oct 2017
5+ years since the 1st diagnoses of the Lymphoma. Blood tests are still coming back good. My energy levels are still high. As long as I keep going on whatever I am doing all is good. When I stop, I am ready for a nap. I do feel more tired, and if I am dormant for a period of time I will doze off. I don't know if it is coming back, or if it's just old age. I do have another blood test coming up this month on the 24th of Oct. If it will be something to share, I will be back. If not, I wish you all well,and be back before you know it. Denny.
25 Oct 2019
Wow, I can't believe 2 years have gone by.Things are still going well. Energy levels are high,and blood counts are good. Still living the positive dream, one day at a time. If you are reading this and would like to talk, I am still available at, (denny1944@bex.net). Denny.
11 Feb 2016
As you can tell a lot of time has passed since my last post. At the end of Nov. 2015 I was 5years clean of my throat cancer. The Radiation Dept. has cut me loose, now I only see the ENT Clinic once a year.
My Lymphoma is still in check. I go in every 4 months for consultation and blood work, all of my blood counts are coming back normal. My energy levels are all up. I'm still living in my positive world, one day at a time. I guess that's it for now, I'll be back when there is more to tell. Again, if I can help in anyway please contact me. Be sure to leave me a way to contact you. Denny.
21 Jan 2017
Here I am again, almost 1 year later. Everything is great, just living the dream, one positive day at a time. Blood counts are good, energy level is high, and thankful for every day that comes my way. Once again, if I can help in anyway please contact me. Be sure to leave me a way to contact you. Denny.
20 Jun 2017
No new changes. As far as the cancers go, everything is good on that end. At 75 now, things don't work as well as they did at 20. However I still am holding on to my positive attitude, I don't dwell on what is broke, I consider what I have left to work with, and make it work. Appetite is good, energy levels are good, and still living the dream. Again as always, if you read this, and I can help in any way, please leave me a way to contact you. Denny.
7 Oct 2017
5+ years since the 1st diagnoses of the Lymphoma. Blood tests are still coming back good. My energy levels are still high. As long as I keep going on whatever I am doing all is good. When I stop, I am ready for a nap. I do feel more tired, and if I am dormant for a period of time I will doze off. I don't know if it is coming back, or if it's just old age. I do have another blood test coming up this month on the 24th of Oct. If it will be something to share, I will be back. If not, I wish you all well,and be back before you know it. Denny.
25 Oct 2019
Wow, I can't believe 2 years have gone by.Things are still going well. Energy levels are high,and blood counts are good. Still living the positive dream, one day at a time. If you are reading this and would like to talk, I am still available at, (denny1944@bex.net). Denny.
