Week 19 - Monday

The excursion begins. The trek starts today. We are off to Florida until early May. I sure hope it gets warmer by the time we arrive.

We will be spending Monday night with my brother Tom and his wife, Pattie, who live in Covington, Kentucky.

Taking our time driving and expect to get in Clermont Thursday afternoon.

We are taking so long as it takes me a couple of hours to feed myself breakfast and then again at dinner time. I can't wait until food starts tasting normal and I do not need to use my formula and feeding tube.

Bon Voyage!

Week 17 - Thursday

Today was good. Met with both of my cancer doctors and discussed the results of my CT scan.

ALL IS CLEAR. The tumors no longer showed on the scan. I am officially in remission.

The rest of the discussion was on being on vacation in Florida. I had looked up cancer centers that are close to where we stay and Dr. Herman picked one and will make arrangements for me to see a doctor while in Florida. They will have all of my records and will understand my concerns. I need to see a doctor on a monthly basis to ensure that I don't acquire infections or any other complications while in recovery.

I will work on feeding myself as best I can, first with liquids and softened foods and then hopefully with foods that are more solid. I have no idea how long this will take me, but I will be working on it. I want to get so that I do not have to use the feeding tube and formula.

Anyhow - today is a call for celebration with my treatment.

Thanking each and everyone of you for all of your moral and spiritual support!!

- Pat

Week 17 - Tuesday

Tuesday I had my CT scan at Saint Lawrence campus of Sparrow Health Centers. Now I have previously had a scan like this but it was during the time that I had temporary amnesia back in 'the beginning' of my troubles. So I do not remember what the procedure was like.

This test is to show my doctors the results of my chemo and radiation. And...for me I hope these results are good.

The test had me pass through the scanning device while I lay on my back. The scanner moves back and forth, gives me directions to 'take a deep breath and hold' then 'you can breath normally now', while it takes the necessary pictures to create the desired test results. Before this they hooked me to an iodine IV that would run through my body and show up on the results - thus improving the reading by the doctors. A couple of quick passes for alignment, then a full pass and I am almost done. The next time I needed to have my arms above my head. Another pass and I am done. It was easy and fast - lasting about five minutes.

So now I meet with both of my cancer doctors and will be going over the results of these tests. This is the first diagnostic test to see the results of all of my previous cancer treatments.

Wish me luck.

Week 17 - Monday

Monday at Sparrow Hospital radiation/x-ray lab for my video test to see if I am swallowing OK and not going to aspirate - 'swallowed food and drink gets to the lungs'.

I was set up sideways to some type of x-ray camera and could watch my testing on a TV monitor in real time. This was really pretty cool. I was giving some type of liquid or food and we could see it and follow it as it entered my mouth and continued as I swallowed down to my esophagus. First - a small amount of liquid barium and we watched. I didn't aspirate. Liquid went down to my stomach as it was supposed to. The technician noticed that I did have trouble swallowing - it took me two swallows to complete this step where normally it is just one. I completed 4 additional tests which were larger amounts of the liquid, small amount of a thicker solution, a larger amount of same solution and finally applesauce mixed with the barium. In all cases I successfully swallowed for all tests. No aspiration. I can begin to start feeding myself orally. I still will need to supplement this diet with my special diet via my tube until I can consume the necessary calories to maintain my weight.

Week 14 - 15

Last week was Thanksgiving. That went well. I grilled the turkey outside for all to feast on. Unfortunately I am still feeding myself through my feeding tube. Energy level is still low. I slept through an awful lot of football this week.

Spartans are Big Ten champions!

Yesterday I had an appointment with Dr. Hamdan. He was going to determine if I continued with my chemo later in the day. After my exam the doctor determined it would be too detrimental for my recovery to have the third chemo treatment. So that has been cancelled, again. I'm still not eating anything and, again, I am having trouble even sipping water through a straw. And my mouth is still rather sore. So, I am being scheduled for therapy to learn how to use my throat again. This should help me get into the feeding.

I am disappointed that I will still need the feeding tube when we go to Florida. I was hoping I would have this removed before we left. I need to find out information about what kind of activities I can do with a PEG tube. Like swimming and golf. The internet says it's possible. Dr. Herman is going to provide me with info at my next appointment. Only 4 and a half weeks until we leave for Florida.

Week 13 - Friday

Things are getting better!

Had doctor appointment with Dr. Herman - my radiologist - yesterday. That went pretty well. The doctor thought that my improvement was really good. I am not going to be seeing him again until Thursday, December 16th (Angel's birthday). I will be having a CT scan on the 14th, so hopefully we will discuss the results of this test. My doctor acts like everything will be good.

I do not know when I will be eating again - but I have permission to start taking baby steps - I mean baby food - if I can handle it. I do have to be careful as the food could cause me to choke. So, my new diet could be baby applesauce, baby pears, baby squash - you know - all of the yummy stuff. I probably won't be going for the works come turkey day - but maybe some potatoes and gravy. Also, I am going to start trying some really 'thin' soups.

So things are progressing slowly. I am finally enjoying 'sipping' water through a straw. Next, I will be downing the baby food. Pretty soon 'olives'! I hope I don't get too stuffed.

I had committed to grilling a turkey this year for thanksgiving. That was before I discovered my cancer. But, I am still planning on cooking the bird and we will be having turkey day at home this year with all of Carol's offspring.

That's it for now.

Week 13 - Wednesday

Carol and I went to the movie yesterday.  (Morning Glory – really cute!)

It seems like I get a little better each day now.

I have been able to drink water through a straw for the last two days. Everything else I get through my feeding tube. But I am finally feeling better so that is good.

I have gone through 35 radiation treatments and two chemo treatments – and during this time I got blood poisoning – and that was what sent me to the hospital – for six days. I had four transfusions since the blood poisoning.

Looking forward to Florida. The PGA tournament was from Disney this weekend and the weather looked perfect.

Couple of problems around home. Last Thursday the spring for the garage door broke – locking both of our cars in the garage until we could get service out – of course it was late in the day. And then Sunday night, Monday morning we lost our heat. Consumers didn’t get to us until after 4:00pm. But we survived and everything is back to normal.

Carol worked in the yard all week when the weather was so beautiful. I even basked in the sun on a couple of days.

We are going to be renting a different home this year – but it still close to where we stayed the last two years. I guess I will be doing more relaxing that I have in the past years.

Week 12 - Day 2

Appointment with my oncologist - Dr. Hamdan - on Monday. Told me I was doing fine. Need more new skin to continue growing inside of my mouth and tongue area. The thyroid test I took on Friday did not identify anything. Doctor wants to follow up with additional thyroid tests.

Dr. Hamdan still thinks I should get my third chemotherapy treatment. Tentatively scheduled for 3 weeks from today. I will see the doctor earlier in the morning to verify and prepare for chemotherapy to follow this appointment. (November 30th)

Soon after this - I will be scheduled for another CT scan to determine where my cancer is (or isn't). Both of my doctors will study this scan and give me their opinions.

My doctors are aware of our Florida plans and will make necessary arrangements for follow-up while we are snow-birding. But, it looks more and more like my Florida winter this year will be spent in more of a convalescing and getting better mode than swatting the golf ball around on the golf course. Today this seems like a bummer, but the problem is I am not swatting anything around right now anyway. More to come as I learn what is happening. Next doctor appointment is scheduled for a week from Thursday with Dr. Herman - my radiologist. (November 18th)

Week 10 - 11

Just got back from the doctor visit for this week. Dr. Herman - radiologist - says I am looking and doing really good. My skin has all healed to the point that I do not have to put cream or lotion on in anymore. The inside of my throat is coming along. Still healing - but looks really good. This will take longer. (This was pretty much the same diagnosis from last week.) Next appointment is in two weeks.

I'm disappointed that I can't start feeding without the tube. The doctor said he would like me to continue with just chipped ice and maybe try some water for the next two weeks. It's going to take some time for all of this to heal.

I complained about how tired I always am. This is normal and I should rest as needed. But they are going to check my thyroid as it could have been affected by the radiation.

So - I am back home now taking my lunch via the tube and getting ready for a nap.

I've seen a lot of friends, family and acquaintances lately and they all tell me how good I look and how much better I seem. But, I look in the mirror and see a rather sickly, jaundice, skinny, puny, weak, old, sad person with skin that is barely clinging to my bones and just a really old person. I guess I better be finding a new mirror to use.

Week 9 - Complete

Made it through the week. I've finished all of the initial treatments. Now I need to get better.

Proof of Graduation

I'm not sure just what to expect now. All the time that I have been getting treatment, my  goal was to get all the chemo and radiation done. ...and... OK ... but what now. I still have all of these poisons in my body and they are still affecting how I feel and how I act. When am I going to notice some change of getting better.

The last two days all I have wanted to do was sleep. I tried to force some kind of energy but the results were usually to not really do much of anything.

I'm looking forward to when something of the 'old self' will start working like it did. You know - like tasting and drinking water, or eating some soup (or anything) or being able to talk out loud. Now I hear I will need some kind of  therapy (Speech Language Pathologist) to get my swallowing back to functioning normal. This will get me to be able to start swallowing again. But I do not know when that will even begin.

In the meantime we keep treating my skin daily with the vaseline preparation during the day and the Silvadene cream at night. This will continue until my next doctors appointment which is scheduled for Thursday, 10-28.

Until then - no more treatments to make me feel any worse. And that's a good thing!

Week 9 - Day 1

Today was all GOOD NEWS...I think.

I was able to resume radiation today. And, Friday will be my last day of radiation. Four more days to go.

My doctor noted during examination that my cancers have shrunk - he is unable to detect them. THIS IS GREAT! This is what this treatment has been about.

After radiation and the vaseline wrapping I met with my Oncology Doctor. More good news. We will be postponing the third chemo treatment indefinitely. We will continue to monitor my condition with various exams and scans, beginning in approximately six weeks, to determine the net results of the chemo and radiation and determine the future treatments as required. Hopefully this includes ice cream and stuff like that!

Now we will find out the results of all of these treatments and was it possible to remove the cancers from my body.

I sure hope so!!!

Week 8 - Complete

I have finished eight weeks of treatment. This week was more of a 'get yourself a little more physically fit' than any treatment. And - of course - last week I spent in the hospital curing blood infections and such.

My main object this week was to get the skin that has been burned (radiated) on my upper chest and neck areas to a stage where I will be able to continue with the remainder of my radiation treatment. It looks as though that is being accomplished.

I will begin radiation again on Monday. Also on Monday I will be meeting with my oncologist doctor to discuss status of myself in regards to chemo. More to come on this after I see Dr. Hamden.

I am doing fairly well this weekend. I still have a high buildup of mucous which interferes with my breathing and swallowing, especially at night. I am not able to talk or swallow as of yet, and I do not get a large amount of sleep.

Thant's it for week 8.

Week 8 - Day 3

Back to the cancer treatment center today. We are working on getting my skin cleared up and back to 'a more normal' condition. This seems to be coming along extremely well. Treat with Vaseline for half a day, then the silver cream overnight, a nice easy shower in the morning and then the nurses 'pick' at my skin to get it 'happy'. Progress is 'remarkable' I am told.

Also have another body infection that covers most of my back, waist and groin areas. More medication for clearing this up. (I hope)

Tomorrow - the procedure is scheduled for 9:00am and then to the 'Transfusion' center to have two blood transfusions. This will take about six hours. During this time I feed and drug myself. I prepped today with blood tests.

The good news! Monday I am again scheduled for radiation. Six more treatments to go - was confirmed by Dr. Herman today. So - the last radiation treatment is scheduled for Monday, October 25th, 2010.

I am having trouble coordination with Dr. Hamden on the conclusion of my chemo treatments. Currently I have an appointment with him on Friday, October 22nd, 2010. Hopefully we can get an appointment scheduled sooner than that but who knows.

Then we will begin the diagnostic portion of all of this to determine the results and how I get myself back to a normal life again. AMEN.

Week 8

Getting released from the hospital today. All medications have been converted from taking via IV so that I am able to take them - or an equivalent - via PEG feeding tube. Even got my 2011 flu shot as I was checking out. Getting this shot is common for patients under chemo treatment.

Radiation scheduled for 1:45  - and - well - it looks as though my skin has burned so extensively from previous radiation that it is to 'tender and raw' to permit any additional radiation until better healed. This is a set back. Why wasn't this being checked out while I was staying in the hospital so the new 'burn' treatment could begin?

Well - Sparrow and the Angel got to meet on this issue - and it wasn't pretty. I'm sure you all understand.

As for me - I will be going into the radiation center everyday to be treated for the burning. Load me up with Vaseline - until I go to bed - then Carol get's to spread on this Silver Sulfadiazine Cream to keep me slathered up overnight. When we go to the hospital the next day - they remove the Silver Sulfadiazine Cream and any loose or dead skin - then I am examined to determine if radiation can resume or they again will load me up with Vaseline to begin the process for another day. This could prolong radiation by 2, 3, 4 or more days. Dr. Herman told me today I am scheduled for six more treatments. Let's just hope that they resume soon.

This Silver Sulfadiazine Cream is what is used on burn victims to calm down the burning and to help remove the old burned skin. When they exam my skin they are looking to see if the new skin is growing back together and beginning to appear and become normal. In my case the burned skin is both external and internal - in my mouth and throat area.

Week 7 Ends

WOW! I think that the Spartan Football Team just played their closest 'IZZO' like performance on Saturday. It's good when good things from one program run into another program. This is certainly not to take anything away from the current regime. As coach Dantonio has worked hard to make this program what it is today. I don't know about you - but it sure makes me proud to be GREEN!

It's Sunday morning and I'm still a patient at the hospital. I completed two more radiation sessions last week. I am estimating that I have 10 more radiation sessions and one more chemo session until I have completed my cancer treatment. Who knows what is going to be involved in the healing process.

I have pretty much come apart this week. The radiation is like extreme suntan in my neck and facial areas and portions of my skin peel off. Can't talk, can't eat and can't drink. That's my normal today.

But - it is getting towards the end - and I am really excited about that. I probably won't get any 'real' doctor updates until at least tomorrow,

Week 7

Not so good. Chemo was cancelled on Monday...as was radiation indefinitely. I have developed a blood poisoning and my white cell count is down.

I needed to be in the hospital to get this treated. I have been here at the hospital since Tuesday evening. (Room 584)

See ya ... Pat

Week 6 - Day 4

Looks to me as though my writings are becoming rather sparse. There is probably a reason for that.

Tuesday was my 25th radiation treatment (of 40 scheduled) and the next 15 are with a better fitting mask (tighter) so that the radiation can be pinpointed more accurately. (I do not know if 'more deadly' is proper English.) Tuesday I have added another pain-pillar medication to 'Help Me Make It Through The Night'. Morphine via patch. I think that is were the term 'Who Cares' might have been termed.

Dennis took me Wednesday to the cancer center, 'ACE' Matelske (I have always wondered when those two words would finally fit together and have real meaning in my life - and now I know!) took me today. Carol is taking me tomorrow.

...and that will be the end of week 6.

I have found it too difficult to go alone anymore. So if anyone would like to chauffeur me one day - let Carol know and she will schedule it up. That way she isn't 'stuck' going everyday.

Last Chemo day is Monday. Bob F. will be host for the day. Nim us taking me on Wednesday and Dennis on Thursday.

Overall - I am hanging in fairly well. With the exceptions of I can't talk, eat, drink, have a extra large mucous buildup that I am having trouble pumping away. The drugs must be helping me - anyhow - I keep taking them.

The best thinks are, of course,  your prayers, wishes, e-mails, cards and COMMENTS. Don't stop now - even if I may miss a day or two of 'blogging'.

It's all downhill now - I hope. Should be getting some kind of a prognostication soon.

Week 5 - Day 5

Congratulations! I made it through another week. Five more radiation treatments are behind me.

Some things have changed. Last week didn't go so well. I've been sick, tired and not able to talk. But today something has happened. I feel pretty good - and it's Friday afternoon. I think that a lot of this has to do that all of the different meds I am using are starting to kick in and control the various negative issues that the radiation and chemo are causing.

The hardest thing for me to handle lately was all of the excessive build up of flem in my mouth. It just kept  building up and all I could do is hear it 'gurgle' in my mouth, throat and upper chest. Carol thought I might be getting pneumonia. Well, a combination of drugs to eliminate some of the mucus, a mouthwash that makes my mouth feel numb - like from the dentist office and a new pump that sucks this crap out of my mouth so I do not have to continually deal with it. I can get relief for 1-2 hours before I need to start combating again. Now this pump - it sucks that stuff right out of my mouth. I think that if they would have had one of these pumps on the 'Titanic', it would still be sailing the oceans yet today. Hmmm - I wonder if I could use it as a bilge pump in it's next life.

George Moberg and Don Clingersmith chaffered me to the hospital Monday afternoon. Hadn't seen these guys since the GMLSRC golf outings in June and July. They are all up to VanEpp's place for the Newberry Open. Save me a place for next year. I hope George is aware that there have been sightings of snow-cows as far south as 'Leota' this summer. Oh, he should be OK -  I donated some extra quarters to pay for my shuttle service to the hospital.

Paul and Craig stayed with us on Monday and Tuesday. It was good for me - but I wasn't able to talk much. I'm not sure if that was good or bad for them. I really do like it when either one of them can spend time with us. You know - 'daddy-sitting'.

We finally were able to park both of our cars in the garage again. We had moved various furniture and stuff out to the garage to do some remodeling the early part of June and Friday the last of it has 'vanished'. Some to friends, family, friends of friends, normal trash removal, big ticket trash removal and Friday the rest of it was donated to VOA who came to pick it up. It's just like moving home from Kentucky.

Again - I enjoy reading all of your comments and thanks for all of the cards and notes. They really do cheer one up.

Week 5 - Day 1

I am officially declaring Monday as the hardest day I have had to this point of my treatment.

Enough said!

Week 4 - Days 2 & 3

I should have update this on Day 2 as after radiation I met again with Dr. Herman. He was very encouraging and after examining my cancerous area said that we were doing really good. The tumor has been shrinking - enough that he recorded new and smaller measurements for the size. Unfortunately I am unable to forward that data as I was unable to write it down at the time.

THE GOOD NEWS AGAIN IS THE TUMOR IS SHRINKING!

Day 3 and I didn't have a lot of energy. I assume this is the result of the chemo kicking in. So, after radiation, which went smoothly, I returned home and napped for a good portion of the rest of the day.

I see that Pat and her father, Stan, took some cake up to the radiation visitor area. It was almost gone when I got there at 1:30. Seven years - CONGRATULATIONS!

I guess I better start baking cakes!

Week 4 - Day 1

Going pretty fast. It's hard to believe I am saying 'Week 4'.

I had a good weekend. Spartans won!. My brother Dan, and wife Sue, came down from their home in Harrison - used to be mom and dad's cottage - for a nice Sunday visit. The four of us don't get together as often as we should so it was a  nice day of  'keeping in touch'. I enjoyed.

My mouth was sore and it was hard to talk and swallow. I am going to try and work harder on improving both of these. I do not think I have cured myself yet of the yeast infection in my mouth.

_________

I must say that I wasn't looking forward to my full day of treatments. Dr. Herman might have something to do with this as during my visit on Thursday he commented that I was going to be having a tough week next week.

__________



Denny and Ron were here to pick me up for my day at the cancer center smartly at 8:00am. After a 15 minute social hour we headed for Sparrow. These guys should become greeters as they are as suave as Darrel (Phil) and Daryl (me) are in East Tawas. (The Lyct Brothers - you figure it out.)

Anyhow - it sure changed my day having the Fox brothers at my side. Well - if you could get a word in edgewise with Ron in perpetual talk mode. That was good for me as I was still not in full talk  mode. (I wonder if his parents ever found a way to interrupt him so they could just 'chew his ass out' for something he might have done wrong.)

These guys took charge of me when I am doing chemo. Denny got me set up and fed me my 'formula' which we brought from home. He gave me two separate feedings. Ron took excellent notes whenever anyone came in and asked questions and gave instructions as far as my condition and care. Both of my 'brothers' were very cool and interested and concerned with my care by the staff. We were a good team. During my chemo time - Dr. Hamdan - came in for my update. He asked a lot of questions which I tried to answer or counter with a question and we spent about 15 minutes in consultation. When he concluded I asked him exactly if he could tell how I was doing as far as treating this tumor? His answer was that he thought it was still early to tell.

So chemo was an easy time. Denny and Ron had been in this area with Alice (their mom) when she was  going through her treatments - but not in the infusion room we were in. This room was small and comfortable with a reclining chair for the star and a couple of  'visitor' chairs. A TV - which was never turned on. But a good social atmosphere.

All the time many different liquids, drugs, and other substances were 'ported' into my body via my new orifice which had been installed in my upper chest. I do not feel any of these. And with all of the different medications, hydrations both before and after my 'cisplatin' bottle and am feeling know side effects from off of this treatment.

AS A MATTER OF FACT - I AM FEELING PRETTY GOOD!!!!

Chemo session ended about 1:20pm. Just waiting to get my shot and then head over to the radiation side.

As soon as we got to the radiation area - they came out to see if I was ready to get fitted for a new mask. Sure. I asked if my brothers could watch. Yup come on back. Well - this was a hoot. Me in handcuffs and Ron and Denny giving the staff in the simulation area a hard time about everything. I think this was the happiest these place had been in a long time.

It would be nice if Ron or Denny could leave a comment about this for all of you to read. We did have a good time and they were really interested as they never got to see what their mother went through when she was having her fitting. I know they were surprised and glad that I had them invited back for this process.

Then off to my radiation. The usual. Not meeting with the doctor today - so we are out of here and heading home.

I am so thankful that Ron and Denny spent this day as my 'special' caregivers. I think they had as good a time as I did. WHAT A GOOD DAY! Love you guys!

I'm still feeling pretty good and my second of three chemo treatment's are complete. I'm losing hair everywhere.

If anyone would like to go with me to a radiation treatment at Sparrow - just let me know. Every week day - 1 to 3pm. You can meet me there or take me there. Call on Carol's phone and we can make arrangements. (I'm still having trouble talking) Call on my phone if you don't have her number.

PS - I wonder if all of this verboseness came from hanging out with Ron yesterday. Ya-da-da-da-da-da!!!!!

See everyone tomorrow.

Week 3 - Day 4

Made it through another week. Friday I didn't receive any radiation as the machine was not functioning properly. I still got the pre-radiation shot as always because I didn't know until later that I wasn't going to proceed with the radiation.

It seems almost that I felt just as bad. Must be that shot is giving me more 'grief' than I thought.

So today - Saturday was rainy and gloomy. I spent most of the day feeding myself and watching football. Carol did some shopping.

My brother and his wife are coming down from Harrison tomorrow to spend some time with us.

Dennis and Ron will be spending the day with me Monday. I have my second long day at the hospital. Second chemo treatment begins at 9:00am and then the radiation at 2:00pm. Also meet with my medical and radiation oncologists. And...I have been told I need to have a new 'mask' created as I have lost enough weight that I am not restrained as snuggly as is needed. It's a good thing that I will have good company.

The following week, Craig and Paul are planning and spending some time with dad. Craig and Kristin will be heading back home to Auckland before the end of the month.

I hope I haven't made my experience to 'gross' sounding, but I am trying to let folks know what I am going through and what I feel. Most of my bad is the sore throat, nauseous feeling, sore mouth and no desire for food or liquid of any kind. But, I am getting plenty of nourishment through my PEG tube, although this keeps me pretty busy getting in all my drugs, formula and water dosages that are required and the preparation and cleanup that is associated with these 'feedings'. I am getting good sleep at night and I am still driving and going to my appointments everyday - usually by myself.

I wonder how Michael Douglas is doing?

Week 3 - Day 3

Not much to say today.

Not feeling to good.

The end.

Week 3 - Day 2

Pretty much the same routine now. Give myself two of my five daily feedings of 'formula' and I now crush my pills and take them through the tube. Then I head out for the cancer treatment center, get my shot - which seems to be making me sick -  and then head to my personal tanning bed for some special radiation. This makes me tired. Go home - give myself another feeding - and fall asleep in the recliner.

Sounds just like the life of Riley.

The doctor told me my tumor is shrinking. That's good.

Week 3 Begins

Continuing with my radiation after 3 days off.

I'm still losing weight - nearly 25 pounds. I am having trouble talking and swallowing and I just gave up and am nourishing myself 100% through my new 'pie-hole'. Keeps me busy all day with all the filling, dripping, cleaning and then starting over five times a day.

I got another prescription today to help with my mouth and throat soreness. This numbs up my mouth pretty quick and makes it feel like I just left the dentist. Still doesn't help me swallow. I nice cold glass of water sounds so good...but it just won't go down.

I was sick yesterday when I got back from my treatment. This was the first time that I have been sick.

Not much good news here - but that's kinda of how I feel.

Labor Day - Some Updating in the Past

I have input a page today for July 22 - 'Getting Results from MSU'.

You can scroll down to this date to read or use the Blog Archive on the bottom right to go directly to these pages.

Week 2 - Day 5

Thursday night my appetite went away completely. This was caused by a severe ugly taste in my mouth and a new sore throat making it very hard to swallow. I discussed all of this with my nurse after radiation Friday and they found that I have developed a yeast infection in  my mouth. So - now - additional drugs and more powerful pain relief. And I'm still taking my happy pill! These new drugs are liquid so I can take them either orally or by my gastronomical tube.

I have been taught all about using my feeding tube and I know have formula and I will be sustaining myself with that method until I can swallow more easily and the crappy taste in my mouth goes away. It's not too bad  - but would be better enjoyed in private versus during dinner at the Olive Garden.

Looks like smooth sailing now...

I have completed one-quarter of my scheduled radiation and I am still kicking. Hope to get re-charged this weekend as I have three days straight without any radiation.

I still need to get the descriptions written describing how my cancer was discovered and all the things that were required to prepare for my cancer treatment. Hopefully some of that will come this weekend. I will let you know when I do this and how to reference it in my blog. Be patient with me.

I would like to 'THANK' everyone for all of their comments, messages, calls, cards, prayers and acts of kindness. It's just so humbling. Thank you!!!

Hope everyone has a great Labor Day Holiday weekend. GO GREEN! GO WHITE!! GO SPARTANS!!!

Week 2 - Day 4

Auuugh! Not feeling so hot after radiation. Kind of nauseous feeling the rest of the day and night. I really get tired now and food has zero appeal to me. I'm forcing in liquids and energy drinks without trying to become sick. I can also start to feel my throat 'close up'. Making it harder to swallow. I was told about all of this, but certainly had no way to know what to expect. I am told that these kinds of symptoms are about normal for the number of treatments I have received so far.

Bottom line - this is not good for me. I'm losing weight at an unacceptable pace - nearly 20 pounds. This means that I will becoming more and more dependent on my feeding tube. It probably will not be to long until home health care starts delivering my meals. That doesn't sound to exciting but it sure should be a lot easier to cook.

My brother and his wife - Tom & Pattie - our driving up from their 'Old Kentucky Home' this weekend to spend some time together. I am really looking forward to seeing them again. And they are now new, first-time grandparents.

Week 2 - Days 2 & 3

Two more days have been completed in my personal tanning bed. The radiation goes rather efficiently now. After attaching me to the bed/platform I am run through the machine for an alignment check and so far they have just needed to make a few small adjustments and then I am passed through a second time for the radiation. Then I am released.

This process is not at all painful and I do not feel anything when I am being radiated.

But - I can notice the difference in myself when the cumulative treatments affect my mouth area. This regime seems to be causing a lack of energy. My mouth is getting dryer every day and the ugly taste is indescribable. I haven't gotten a sore throat as of yet but I can tell that one is coming. Food is not appealing in much of any form.

There has been some 'extra' reporting on throat cancer since Michael Douglas appeared on the David Letterman show Tuesday and talked about his cancer. It's amazing how similar his experience is with mine. He has throat cancer, I have tonsular cancer. About the size of a walnut, discovered a little over three weeks ago, 7-8 weeks of radiation and chemo therapy. His prognosis that he is telling is 80% - my doctors told me 50-60% chance of being cancer free in five years. Well as Michael says - I sure in hell hope that they discovered this in time so that our treatments are successful.

Week 2 - Day 1

Started the regime again on Monday. I've been feeling really good since about Saturday.

Carol went to the hospital with me as we knew we would be meeting with the doctor after my radiation. Looks as though the treatment is progressing as expected. I have lost more weight than they wanted me to and I need to start to mouthwash regularly and start applying the 'special' cream to my neck area to avoid negative effects of the radiation.

Week 1 - By the Wayside

I just can't believe how good I am feeling this weekend. Food sounds good. (Tastes a little nasty) And I am not so tired.

Went to watch the Lugnuts last night. Today we drove to Ionia to visit the family.

I'm getting pumped for the 'draft' for my fantasy football team in a short time.

Didn't feel this way all the tiime though. Friday I was really lethargic and didn't want to do anything but rest. Food sounded, looked and tasted, well, not very appetizing. Saturday morning I still was feeling kind of down - but by mid-afternoon, I could tell that I was feeling better and stronger. But even at the ballpark - with all of its food vendors and smells and activities - the food really still smelled kind of 'nauseous'.

So that's the good news. Tomorrow I start radiation again - but I am thinking - I get three days off next weekend so there is a chance that I could feel great again for part of next weekend.

...and I will take all of that I can get!

Day 4...

It seems like we say we are going to a hockey game for the excitement and we really want some 'fist-a-cuffs' or we watch the car races because of the speed and we really want to see some 'smash-ups'.

Well - I have no 'fist-a-cuffs' or 'smash-ups' to report about myself.

I'm continuing with the radiation and feeling OK.

Yesterday I was extremely tired and when I got back home I pretty much laid around and snoozed for most of the rest of the day. Went to bed early. Didn't even feel like getting to the computer for this simple little update.

Today I feel 'sluggish'. I probably would have called in to work reporting I was sick. So I will probably have another day of taking it easy today.

Radiation - Day 3

Everything still seems to be fine. I hope it is working. I'm still feeling as though it hasn't started yet - the chemo and radiation.

I got to the hospital right around 2:00pm and within 5 minutes I had been given my shot. So now I just waited until radiation time at 3:10. ...and they happened to be running late today. Much easier today as I only was run through the setup process a single time before the radiation. I even think I may have dozed off during the process.

So I am at home now. Craig is on his way from Cleveland to his little hide-away cabin on the Rapid River and is spending the night with us. Dinner and some quality time.

See you all tomorrow - same time - same place.

Radiation - Day 2

I have updated a couple of additional dates since yesterday. June 17th - MRI and July 2nd - EEG. You can scroll down to these dates to read or use the Blog Archive on the bottom right to go directly to these pages.

Due to all of the feedback I received about people having difficulty leaving a comment - I dug into the innards of the setup and set the comments section differently. It seems to have worked as now I am seeing all of your comments. Thanks

The Nitty Gritty -
Last night went really well. I slept well and had no nauseous feelings at all. As a matter of fact I felt no differently than I did Sunday night before any of this started. That was good. Must be all of the different medications are working as they are supposed to.

I now have a new procedure every day prior to my radiation. I report to the Medical Oncology area one hour ahead of my radiation to get a shot of Amifostine. This drug is intended to reduce many of the side affects that will be caused by radiation. But I have another medication that I now have to take at home one hour before the Amifostine. This is to reduce the side affects caused from this shot. This new prescription is Kytril.

It's going to be really interesting looking at all of these different bills when they start to get posted. This treatment is rated $$$$$.

After the shot I go and have blood drawn for the radiation tests through the week. This is done on sight every Tuesday. Then around the corner to the patient lounge until my name is called.

You know the drill - buckled down to the bed - the scans begin. Every day so far starting last Friday I have had two passes to verify the positioning is exactly right. They told me that beginning tomorrow I will only have one of these passes. They must becoming more confident. Then a third pass that is the actual radiation. IT IS OVER WITH FOR ANOTHER DAY. I am advised that the nurse wanted to see me.

So back to the patient area for my call - which was only a couple of minutes. Vitals were taken and just some quick questions about how I was doing. She told me that the Doctor also wanted to see me and she left.

Dr. Herman - my radiation oncologist - entered a few moments later with another doctor. He looked at my throat and commented no change as of yet - which was expected. Asked me how I was doing and just more of the usual doctor-patient exchange.

So - the question is - HOW AM I DOING?
To this point I am doing just fine. None of the ugly symptoms have yet to appear. My radiation is not painful and I am not feeling any pain and for that matter I am not yet feeling any differently nor any unusual or new discomforts.

So until tomorrow - Soyanora!   Hope I can report things are also this good tomorrow. Keep the comments coming. And share this with whomever you wish.

Patrick

First Day of the Rest of My Life...

The official day of treatment is today. Carol and I got to the Sparrow Cancer Center this morning around 8:15am. We were ushered back to 'Infusion Room 10' which is my own private 'cell' in this area. The IV was tethered to my body and the process was explained to us. I begin a 'pre-hydration' first. During this time I am giving steroids and a shot of Kytril (to help prevent Nausea). Then the Cisplatin. (My magic elixir.) This was completed at just about noon and then I started the 'post-hydration' - which will take about another hour. Then Carol and I are headed for lunch before returning to this area for a shot of Amifostine. I am using this drug to help eliminate the dryness in my mouth and retain my taste sensation that gets reduced or lost during the radiation process. Around the hospital everyone is excited to see how I will react to this treatment as this is the first time that it has been used at this facility for this application. I'm hoping also that this works.

It's hard to describe my emotions that I have been having in anticipation of my treatment. It's been a good thing that the past three weeks have been an especially busy time - what with all of the medical tests and preparation and all of the last minute 'getting in the summer' things. Fortunately by being so busy I have avoided the desperation time of thinking about what is really happening to me and how it effects my body and quality of life but additionally what my immediate future will be like during the next 2-3 months and the true discomfort, pain, and agony I more than likely will be facing.

I was reminded of that today when the dietitian met with us - explaining how she will help me with my diet. And as she continued to explain she described how I will be using my feeding tube to take my prescribed diet. And how I would be taking it every three hours - six times a day. Now this was all news to me. STUPID ME! I thought I was going to be using this for 'OLIVES' as George had suggested. Seriously I thought I would be blending up my meals at the times I couldn't eat or taking soup or 'Ensure' or something like that from time to time. But - more than likely my throat will get to a point where I will not be able to swallow and my diet will be completely ingested through my new 'pie hole'. With lots of water and my daily dosage of drugs will also be crushed and taken this way.

Not to worry about that now. I will be disconnected shortly and will head for the cafeteria.

I will continue after my radiation.

5:00pm
I'm home now from the hospital. The first day of radiation went as expected.

Well radiation technology is similar to an an x-ray except they turn up the power slightly. An x-ray comes at you at 110 volts and the radiation is about hundred times more powerful - at 110,000 volts or so. Just as too many x-rays (at the dentist or at the hospital) can cause damage, well the radiation really causes damage. The science and medical knowledge that is used is to 'fire' this radiation precisely at the cancer area while avoiding as much as possible of the good stuff. And that is where the problems begin because it is impossible to not hit some good stuff. In my case the good stuff is located inside of the back of my mouth, the bottom left area of my mouth and the top of my throat. This radiation will take up to two weeks possibly before I will notice any of these negative effects.

During the days ahead I will try to report how I am doing and feeling as much as possible.

I am feeling fine right now. The chemo and the radiation went rather well and I had been giving several different medications to help me avoid the nausea and dry mouth that is so often caused by the affects of chemo. They seem to be working good right now. The radiation is zero pain - but I am required to lay motionless for the complete time that is required for radiation. Today was about 25-30 minutes. Laying motionless is not as difficult as it may seem as I am completely restrained by a face mask and a head and upper body mold that has been previously fitted and adjusted just for me. The mold is placed on a movable bed and then the face restraining device is toggle bolted down to the bed through the mold into the bed. My knees are elevated and held up by a pillow like device that is placed underneath and my feet are disabled by attaching them together and then restraining them. It kind of feels like completing a face plant off of a bicycle after hitting the curb only I am laying face up versus face down. You don't even think about blinking. I hope I never have to twitch, cough, itch or most of all sneeze. What would I do.

I have pretty much described how I feel and what I did. There is one more thing of note. Talking to the dietitian was rather shocking and I was totally unprepared for her descriptions. As I have know knowledge of how I will feel in the future, her description of what I would be doing with the feeding tube in the future and how I would come to feel to need the feeding tube for energy, nourishment and medication was a lot of additional medical advise that I will more than likely need in the future. It also bothered Carol a lot.

Please apologize for this for being so long today and in the future they will be much shorter, especially as I become accustomed to the treatments and affects. I continue radiation every day, 5 days a week and am scheduled for 7 to 8 weeks. I am scheduled for two more chemo treatments at three week intervals.

I do plan on updating here every day after treatment. Please read, share and enjoy. I would appreciated that you 'Became a follower' of this blog and that you make 'comments' as this will be my best and easiest form of communication so that I can reach all of my family, friends, past co-workers and anyone else I may have encountered in the past. It certainly will be become shorter than today.

Keep sending all your thoughts and prayers my way. They are all appreciated.

Thanks - Patrick

What a Day

This is my first input here. Setting up my blog?? What a 'Rookie'.

I do plan on updating here every day after treatment. Please read, share and enjoy. I would appreciated that you 'Became a follower' of this blog and that you make 'comments' as this will be my best and easiest form of communication so that I can reach all of my family, friends, past co-workers and anyone else I may have encountered in the past.

Who knows what will happen. What if I don't like it. Then what?

Getting the Results from MSU - A Tumor

I finally go to see the neurologist at MSU, Dr. Safdor, who saw me in the hospital and ordered an MRI and an EEG which I have completed as an out patient.

I was feeling fine since being released from the hospital and these tests were to confirm that I truly hadn't had a stroke or an other brain damage and/or MS so I just went to this appointment by myself.

And as I suspected everything was negative regarding these concerns. But...in analyzing the MRI something else was discovered. Squamous cell carcinoma of the tonsils. Pretty big words. Pretty big surprise. THIS SOUNDS LIKE 'CANCER'.  (The following link will open a 'pdf' of my actual MRI Report. Copy of Pat's MRI Report)

WOW! I am feeling rather weak and the staff shows concern for me. Dr. Hafner insists that I have an appointment with an ENT specialist before I leave his office. He sets his personal secretary and a couple of nurses to get me scheduled as soon as possible. Now today is a Thursday and they were frantically trying to get me in somewhere by maybe Tuesday. The doctor said this was unacceptable - I needed to see someone tomorrow. Finally they had me set up to see Dr. Richardson, ENT, who was also the same doctor I had been referred to for my Tinnitus. They also scheduled me for a full body CT scan to see what else might be found.

And the paperwork and insurance forms and medical records and current prescriptions that I have to have completed and organized for my next doctors appointment on Friday.

Squamous cell carcinoma of the tonsils. Squamous cell carcinoma of the tonsils. Squamous cell carcinoma of the tonsils. That's all I could think. It doesn't sound good. It ... well ... I guess it sucks.

It still wasn't verified that it was cancer - just that I had small tumor on my left tonsil. So, I will find out more tomorrow when I talk with Dr. Richardson.

It is time for Thursday golf and that is good. Some of the 'other Champs' patented Bloody Mary's and the camaraderie of the golf league.

Tomorrow will be another day.

EEG - This test is a SLEEPER.

Another test as follow-up from my earlier hospital visit.

The EEG is an electronic inspection of the brain. There was some special preparation required. First of all I needed to diet after midnight and second of all - the tuffy - I needed to stay awake all night. Lots of luck here. I have trouble staying awake past 11:30 at the best. Well - I'll try.

Finally Carol suggested that I sleep for a couple of hours and then get up and I will still be tired by 10:30am when the test starts.

The reason for the sleep deprivation is they want to record the brain in both a stimulated mode and a resting mode.

OK - 28 electrodes are attached all over my head. I then relax in this La-Z-Boy and hear various things while a strobe light erratically flashes to cause the stimulation. The attendant is typing away at the keyboard of her computer and the room lights have all been turned off.

Then I am prepared for the second test. This is where I am supposed to try to go to sleep. Again - the lights are dimmed and it became clinically quiet. And the keys on the keyboard begin sending their secret words to the center of the processor. It was so quiet that it was hard to fall asleep. Each of these tests lasted about 45 minutes. About ten minutes - or so it seemed - the attendant said we were all through. I had gotten a nice little nap.

I asked her if people ever where unable to sleep and what happened. Well - they would only get one half of a valid test. She told me the day before two guys could not sleep and they both told her that they had done the sleep depravation thing.

I suggested that she provide spare TV remote controls for her patients to hold. I'm sure it would help at least the guys fall asleep.

OK - now I wait for my appointment with Dr. Safdor to get the results of this test and my previous MRI.

Take Me for a Spin - MRI

As a follow up to my hospital stay last weekend, I have been scheduled for a couple of additional tests. Today I am getting an MRI of my head area to determine if I suffered any stroke like damages or possible MS. I saw three different Neurologists while in the hospital and Dr. Safdar, from MSU Medical Clinic has ordered this test and an EEG. I will follow up with him to go over the results and determine any future treatment or prognostications as may be required.

I am at Sparrow Hospital for my MRI. This will take about two hours and I will have two scans, the second being after they process a dye through my brain and head area.

Now this is my first MRI of any kind and I had no idea what to expect. I was told I could bring my own CD and would be provided headphones and could listen to my music. This would help me as I was to lay motionless for the total time. NOT! This thing was so damn loud when it was running.

LOUD is not a true description. I just happened to have a hearing exam scheduled the next week and told them about how it may have affected my hearing, Gave a hearing test, and compared to a year ago and I had suffered additional hearing loss. Follow up in three weeks. Hopefully only temporary.

Anyhow - my recollection of the MRI. Similar to a CT scan machine, I get placed on a bed like table and strapped down. Headphones that have trouble staying in place and the beautiful music begins. "Is it loud enough" and I say "Yes" - I do not want so many decibels I can't relax and fall asleep. WHAT A FOOL I AM!

The bed slides into the tunnel and then, And Then, AND THEN...well it sounds like I am standing right next to a railroad crossing and the gates have just come down for a train to pass. A two hour train, clickity-clack, clickity-clack it goes and the gate bells are chiming louder and louder. On top of that right next to where I am standing there is a road crew working, digging several holes in the road and several jackhammers are blasting their hammering noises. What music. Impossible to hear anything but this DAMN TUNNEL MACHINE! It's not claustrophobic - just loud. AND THEN...just as I am trying to adapt to the increased decibel levels another train comes through with all of its additional sounds - blasting it's horn as loud as possible - but still the constant drumming and hammering of the jack hammers. Finally - the table recedes out of the tunnel. Now for the injection and rest prior to the second pass.

And - yes - the same thing all over.

I can't wait for golf league at 4 o'clock with the other champ and some good old Bloody Mary's.

When I get the test result I will let everyone know. Not expecting anything additional at this time as I have felt fine since getting out of the hospital on Saturday.

A Not So Good Day

It's Friday, Carol and I tried to get the ceiling fan in our bedroom to work properly. Ever since our house was re-modeled eight years ago it hasn’t been right and I got the bug to fix it. There is a small antenna wire that enables the remote operation and when the electrician re-mounted it he had the antenna tucked inside of the bezel. Seems simple enough to fix. Loosen two screws after turning off the power, lift the fan and have Carol fish out the antenna – ahhh – there it is – and then remount it on the two screws. We couldn’t get it to line up, it get’s heavier and heavier. At this point I do not know how long we have been holding it over our heads. I couldn’t see as I was just standing on a step stool, Carol was kneeling on the bed. Went and got our ladder and with a couple of books on top and it was the right height to balance and shift around to get it re-mounted. But it was still too heavy so we unwired it, took it completely down and then I took off the blades and the lamp fixture. It then went back up easily, re-installed the blades and the lights and now it all works perfectly.

But……

As I was returning the ladder through the house to the garage I noticed that our carpeting was missing in the den/office/guest room. It didn’t make sense. Carol said that Paul took it. I said, “Paul who?” and then I don’t remember anything. Well – I don’t remember getting the fan back up either. Carol got with a neighbor who was a nurse. LOOKS LIKE A STROKE. This was sometime Friday afternoon – I do not remember much until after 11:00 pm. By now I am in emergency at Sparrow Hospital via Ambulance after first responders and pera-medics (six) had been working on me. Carol told me most of everything that I am writing.

It turns out that I had an episode of Transient Global Amnesia. Had a cat-scan and an EKG before I remembered. You can look this up by googling and the Mayo Clinic seemed to describe it best. Lasts six to ten hours, rarely re-occurs, caused by stress or extreme exercise and looks as though it was a stroke – but no loss of muscle strength. I spent the night in the hospital, was released a little after noon on Saturday and will have a MRI and an EEG as an outpatient next week. This would be to verify that I didn’t have a stroke or any other stroke like symptoms.

I am doing fine. No restrictions. No additional medication. Just a quarter of a day of my life that I have no recollection of.

What a Great Day

It seems as though everything is fine. Paul and his partner, Eric, just completed painting the interior of our home. We are changing the design of Carol's office and converting it into a Den/Guest Room.

I'm looking forward to many golf outings and excursions that are coming during the rest of the summer. A golf trip to Yarrow, Lakeshore Resort and of course, the Newberry Open.