Better Days Are on Their Way

Quick recap: After getting radiation Thursday morning, I visited Dr. El-Khoury who suggested I spend the day in the chemo room taking in various fluids through an IV. As I laid in bed, I promptly threw up bile for Diane and good nurse Deb. I got a little weepy as I said, "I'm sorry. I'm just so sorry that you have to see this." I didn't move again out of bed until 4 p.m.

Diane conferred with the nutritionist in Iowa about some new and different ways for me to get my "product" and ward off the nausea and vomitting. I'm on a new type which is supposed to be more digestible. Also it was suggested that I now use an electric pump that allows very small drops of product through PEG at a very slow rate. The nutritionist, social worker, home health provider (in Macomb) and Macomb Medical Supply all worked in tandem to make this possible. Diane does not have to call and make the arrangements. They are helpers par excellence.

I still felt horrible and on the verge of vomiting while in the chemo room so Dr. El-Khoury and Diane decided it was best for all of us that I stay in Great River Medical Center's hospital for observation. I could see the relief in Diane's face. By 6 p.m. I was in a room, medicines administered through PEG and IVs, and lights out. Diane left and stayed with David and Gretchen Miller.

Friday morning I checked out at 10 and had my 27th radiation blast out of the 35 needed. Homeward bound! Since arriving back to 35 Indian Trail, I barely leave the house--heck I barely leave my room. My mouth is on FIRE 24 hours a day. Oh, I just wish it would go away. This is my biggest challenge so far. This is Diane's biggest challenge so far.

Florence Nightingale: I cannot imagine enduring this odyssey without some sort of life partner. I am so blessed to have Diane nurse me through these trying times. I am about as helpless as I have ever been in my 64 years. She remains stoic, knows I need my space, as I know she needs hers, but when push comes to shove, she is always there for me. You almost have to wonder if all those fantastic experiences we've shared before in life were merely a prelude to this test of love and devotion. It's 10:40 a.m. on Sunday and you guessed it, I'm going back to bed.

The electric pump is working from noon to 3 p.m. each day. Then I take a little break followed by the 12-hour drip starting at 6 p.m. It seems to be working. My morphine patch is now doubled in strength and Dr. El-Khoury added Lorazepam liquid concentrate every 6 hours.

We are in the home stretch. I may or may not have chemo on Friday; this will be decided at Thursday's appointment with Dr. El. I will end my radiation treatments possibly on June 10th give a day or two.

Oh I forgot to mention one little detail: I can no longer talk. I whisper a little and try to talk a bit to Diane but basically, no more talking. Do I hear any laughter out there? Gordy Taylor who received bad marks in school from a teacher who said "Gordy does too much talky talky."

Have a wonderful Memorial Day weekend and remember those who gave their lives so that we may enjoy the freedoms of our lives. Oh and of course, GO BLACKHAWKS!!!

A Mountain in the Road???

Gordy encouraged me to write this posting to let everyone know what is happening. I am staying overnight at David and Gretchen Miller's home in West Burlington, IA. In case readers have forgotten, this couple stayed with me the day Gordy had his biopsy at the hospital in Cape Coral, FL. They also provided a place for me to sleep that night when Gordy stayed in the hospital after his biopsy. We now have a deja vu moment. Gordy is in the hospital; I am staying with the Millers. We are so grateful for their friendship.

After a relatively good weekend following Gordy's 5th chemo treatment on Friday, both of us felt pretty darn good about his medications and their effects. However, Wednesdays seem to be down days health wise. Yesterday afternoon, Gordy fought a difficult battle with nausea and vomiting. We tried everything including breathing techniques I used when giving birth to Ryan. The product didn't stay in his body. Around 2 p.m., he began to vomit and this did not stop. The evening hours were not good. Overnight he was up many times and the morning brought no relief. There was nothing to throw up except bile. Now this is not good for anyone but someone who is going through radiation and chemo for base of tongue cancer, this is excruciating!!

Coach Patterson was on the docket to drive Gordy to radiation this morning. At 6 a.m. we both knew this was not going to happen. I called Pattersons and postponed his driving duties. For the first time, Gordy stretched out in the back seat of our car and prayed that he did not get sick as I drove him over the country roads to Iowa. Upon our arrival at the Cancer Care Center, he had radiation and then we visited with Dr. El-Khoury, the oncologist, who decided Gordy needed at least 4 hours of hydration with various liquids via IVs. He also prescribed a liquid ativan and increased his morphine patch strength.

Gordy continued to vomit and kept apologizing for his actions. The oncology nurses and staff are very understanding and empathetic. They are wonderful!! Around 3 p.m. Dr. El-Khoury suggested that Gordy stay overnight for observation. Gordy did NOT give any resistance to this suggestion. I was relieved. I also felt rather unsure of driving him back to Macomb in his current health state, and I also knew we had to be back in West Burlington by 8:30 a.m. So folks, he is getting a lot of good "stuff" through his IV at the hospital and we are all feeling better that he is under the watchful eye of medical professionals.

Tomorrow he will not have chemo. He will have radiation. At this point, he may have chemo next Friday but this is not for sure. June 10th is the end of his radiation treatments if everything goes as planned--not sure at this point.

His entire neck area is crimson red and looks burned. I kidded him today that even though he is a suburban boy from Hinsdale, he is now a red neck! I guess when a person is relieved to be in a hospital and that the person who usually cares for him and loves him very much is relieved he is in the hospital, then we know that's what is best.

Someone asked me the other day, "hey, what's Gordy eating these days?" "What kind of soup does he like?" "How about you and Gordy going out for pizza?" I am reminded that everyone is not a part of my world right now. Gordy has not had anything by mouth for at least 4 weeks. Everything is introduced to his body through PEG. All medications are administered through PEG.

The treatment is hell. However, I thank God that a doctor didn't say that Gordy has pancreative cancer or something else like that because this cancer's prognosis is positive. We are most thankful. The journey to that end is a very rough one though.

For all of you caregivers out there--I applaud and empathize with you!! This is a journey I will not forget. When I taught a leadership class at Spoon River College, the emphais was on servant-leadership--by serving others we become leaders. I am serving Gordy now but I sure don't feel like a leader. To give you a little insight into our days right now, here is a brief schedule:

5 a.m. I give Gordy Reglan through PEG. Both of us sleep a little. This medicine must be given 30 minutes before "product" is given.
5:30 one can of "product" or food is given through PEG--one can takes approximately one hour to go through PEG.
6:30 Phenergan suppository for nausea and vomiting.
7:30 shower
8:00 leave for Burlington
9:00 arrive at the Cancer Care Center
9:30 radiation Monday through Friday
10:00 leave Cancer Care Center for Macomb
11:30 Reglan
12:00 second can of "product"
1:00 nap
3:00 Mirapex for restless leg syndrome
3:30 phenergan suppository and liquid vicodin
4:30 Reglan
5:00 third can of product
7:30:Miropex and liquid vicodin and phenergan
8:30 Reglan
9:00 fourth can of product, miropex and liquid vocidin

This is approximately what takes place each day. I administer all of these things which I don't mind. If I am out for something, Gordy can usually do some of the above; however, I like to be there to help out.

Tomorrow is another day and Gordy and I am trying very much to live each day as it comes and not project. This "mountain" will pass; we will get through it. Hey, we are Team Taylor and this thing called cancer is not going to bring us down. I just wish that my husband did not have to experience all of this pain and discomfort. I'm sure you understand, my dear family and friends.
Your continued support is a constant comfort to us. THANKS!!!!

The Mask and a New Game Plan

You bet, that's me! Looking at these photos is not for the faint-hearted, and I, myself, never knew what I looked like until just now when Diane showed them to me. This is my destination Monday through Friday in West Burlington, and each treatment lasts between 20 and 30 minutes. It takes one hour to drive to the Cancer Care Center and an hour home so on radiation only days, it is a three-hour commitment. When I enter the "radiation room," two wonderful technicians take my music selection for the day and then adjust me on the table where I'm covered with a heated blanket after taking off my shirt. I have a headrest and then the mask is literally bolted into place so that I cannot move my head. You see one of the bolts in the photo. This is not for the claustrophobic and it is rather uncomfortable but necessary. So far, we've played Gershwin's "Porgy and Bess" and "Rhapsody in Blue," Copland's "Appalachian Spring" and "Rodeo," Bernstein's "Candide" and "West Side Story," and the soundtrack from the movie The Mission. I have no idea how I got this interest in serious music, but I've had it since I was a youth and remains with me today.

After my treatment, the lights come on, the music stops, the heavy door opens, the techs unbolt the mask, and send me on my way. As of Friday the 21st, I have completed 22 out of 35 radiation treatments and 5 out of 7 chemo therapies. Way to go, Gordy!

I had a little setback this week as I have great difficulty keeping down "product." On Friday after meeting with the oncologist Dr. El-Khoury, we made some modifications in prescriptions. We work really hard to ingest this stuff through PEG and when I "toss it," it is very depressing and painful, but the last 3 days have been very good.

The throat remains a "killer," but I am going for 6 cans of Flexsource (product) today which I have not done in weeks.

Sleep has been a real problem at night due to bloody noses, puking, and sore throat BUT we seem to have discovered a real break through. With the exception of going to the bathroom during the night which I might add is common for 64-year old men on both Friday and Saturday, I slept from 10 p.m. to 5 a.m. When you can't sleep and then you can, how sweet it is. We attribute this to a combination of a 72-hour morphine patch and phenergan suppositories. I also continue to try and get ahead of the pain by having liquid vicodin twice a day. As I sit watching Diane type this, I actually feel pretty good and have not been able to say that for a very long time.

More good news: Diane and I walked from Sherman Hall to Sweeney Cleaners and back this morning and found a nickel and a penny. We are living life in the fast lane.

A Visit from Ryan

For the second weekend in a row I got to see one of my kids as Ryan came down from Chicago on Amtrak Friday night. It was raining but we still enjoyed one another's company and his presence is a nice diversion for Diane who really enjoys bonding with her children.

Problematically I am not great company these days: (1) I have no energy. This is very difficult for someone used to being perpetually on the move. I can sit in front of the tv preparing to watch the evening news and put my head down for a moment and then wake up ten minutes into the broadcast which means I've missed the latest oil spill update. (2) The sore throat gets worse by the day which I expected. I commented to Diane today that the water I was trying to drink tasted bad and then it dawned on us that it wasn't the water at all but what's going on in my mouth that gave it a foul taste. (3) Boredom. I am so bored but I haven't got the energy to go anywhere or do anything. I try to read but that doesn't last too long. (4) Here's the kicker--for years I have suffered from restless leg syndrome or as we call it in the Taylor family "leg Jimmies." They have increased in severity; I suppose my inactivity makes it virtually impossible to get comfortable as every 25 seconds or so, they twitch dramatically. It used to only happen at night but now it is happening all the time and it is driving me CRAZY. I do have Mirapex--little white pills that help. (5) I go from spitting frothy saliva during the day to a tremendously dry mouth at night that requires frequent drinks of water. It is either too much or none at all.

As troubling as all this seems, I simply look at the calendar and realize that every day gets me closer to those magic numbers of 35 for radiation and 7 for chemo. I just wish each day was the equivalent of two or three but sadly that is not the case. I do intend to walk a little more now that it has stopped raining.

Ryan and I rooted the Blackhawks on to victory Sunday afternoon and we even watched the Cubs win a game. My kids are wonderful as they understand that at this point in time, sometimes less is more when it comes to me talking. I'm sure it takes a little adjusting to Dad "taking it" instead of my usual rapid repartee.

Life-Changing Words and More from Diane

Dear friend, Monill McClure, and I just before my last graduation ceremony at Spoon River College in May 2008. I AM RETIRED!

June 2008--the birth of James Arthur Stevenson. IT'S A BOY!

June 27, 2009, Gordon III marries Lisa Adelman of Canton, Ohio, in Chicago. I DO.

January 2010, my parents, Anna and Harry Paulsen. THE FAMILY HOME SOLD.

February 20, 2010, Fort Myers Beach: celebrating Gordy's 64th and John's 36th birthdays. HAPPY BIRTHDAY!

Formal retirement from a teaching career of 25 years at Spoon River College has been filled with many many time-consuming and enjoyable events. I loved teaching but certainly tired of grading composition papers. In June 2008, I travelled to Corpus Christi, Texas, for a 3-week stay with the Stevensons which included the opportunity to be in the delivery room when James Arthur Stevenson was born. It's a boy! What a thrill! Our family had a wonderful wedding celebration week in June 2009 when Gordon and Lisa got married at the Trump Tower in Chicago. Saying "I do" is life changing! My parents, Anna (86) and Harry (88) have some health issues so it was necessary to sell our family home, built in 1951 by my Grandpa Arnoldsen. Now Mom lives in assisted living and Dad resides at an adjacent nursing home because of his advanced dementia. Along with my siblings, I was a caregiver, helped dismantled the home, and secured living arrangements for them. Birthdays always mark another year filled with fun and enjoyable experiences. The Stevensons visited us in Fort Myers Beach in February which was terrific. Now think for a moment--what words have you heard that changed your life: "I'm pregnant" "I passed the exam" "I got the job" "I'm moving" "I got into college" "I'm graduating" "I love you"

On March 4th, Dr. Lozano called me into a small private room at Cape Coral Hospital. He said, "In all of my 27 years of practice, your husband's base of tongue biopsy was the most difficult and took the longest amount of time--2 1/2 hours. On the fifth piece of tissue, I can report that your husband has a one inch plus in diameter malignant tumor." Gordy has a malignant tumor--life changing words!! I was stunned and told the doctor, "you've just told me that my husband of 41 years has a cancerous tumor. This is a surreal moment for me." He replied, "in the next few months, you'll have quite a few surreal times." As the words registered more and more, I cried more and more. These were life-changing words.

A lot of you ask how I'm doing as the caregiver. I have my ups and downs that parallel Gordy's ups and downs. Maybe I am too empathetic because when he's not feeling well, I don't have a good day. When he had the severe vomiting, I feel that I'm failing as his caregiver. Of course this is new territory. As a mom for over 38 years, I usually know what to do in different health situations. Bacterial infections require antibiotics. If a child has a temp for 48 hours, a doctor's visit is necessary. My children have had broken bones, mono, tonsillitis, strep throats, all varieties of the flu, migraine headaches, chicken pox, and so on. However, radiation, chemo, PEG tubes, crushing pills for PEG, keeping track of medicines are new ones.

I'm devoted to Gordy's "new normal" lifestyle. Whatever I can do to facilitate a somewhat comfortable journey through his cancer treatment, I am there. Hey, I always wanted to be in the medical profession but I had two things standing in my way: (1) math and (2) chemistry. Now don't laugh too much!! I do feel very helpless watching him but I know that he realizes I offer my care even when he isn't exactly the most patient patient!!

I don't mind driving to IA and on chemo/radiation Fridays, I usually visit Lowe's, Hobby Lobby, and Target, Target, Target in the morning! I also try to have lunch or breakfast with Gretchen Miller. For the entire afternoon, I sit by Gordy in the chemo room and read, write, or needlepoint.


It is weird not to be sharing meals with Gordy--either at restaurants or in our home. I have forgotten to eat at times. Now that our kitchen is complete and I LOVE IT (photos to come later), I am amazed that I haven't turned on the oven. Gordy and I were watching Sixty Minutes, and I had a bowl of soup. He asked me to leave the room because the smell made him nauseous. I usually eat on the first floor or in my bedroom. Once a week, I go out for a nice dinner. Thanks to all of you dinner companions!!!


More than one person cautioned me not to hurry when organizing and returning items to the new cabinets in my new kitchen. But there are so many things out of our control in our lives, taking care of my kitchen and the house is one thing I can control.

I've also noticed that I use the pronoun we when talking about chemo and radiation etc. I'll say, "we have radiation at 9:30 on Tuesday" or "we see Dr. McGinnis on Wednesdays" or "we have a new medicine for the nausea." Maybe it is a way of showing I care and that we are a couple when fighting this--Team Taylor!!

Here's to the future and hearing some more life-changing words: The PET scan reveals NO CANCER CELLS. YOU'RE IN REMISSION. NO MORE CHEMO. NO MORE RADIATION. LET'S REMOVE THE PEG TUBE.

Thank you for posting blog comments; sending emails, cards, letters, and notes; visiting our home; and making phone calls. A special thank you to Luke and James Stevenson, Will and Audrey Epperly, and Catherine Maloney for the unique, original, creative hand made drawings/cards--thanks kids!!! I'll probably post more during this treatment. Thanks again for the emotional support we've received. You're the best!!!

A Lousy Couple of Days and a Bright Spot or Two

My bump in the road turned into a bit of a pothole on Wednesday. Diane and I arrived in Burlington Wednesday morning for radiation. I went into the building and promptly threw up. This didn't concern me much as it had not happened for a week. We had a productive meeting with Dr. McGinnis who said, "get ready, your throat is about to heat up!" The man must be a prophet or maybe has had a lot of experience because that is precisely what has happened. Wednesday night at 7 p.m. I hurled my cookies again--really hurled. Then again an hour later. Now I am not a baby and I'm prepared for some discomfort but this was ridiculous and frankly a little scary. At 9 p.m. I was on my hands and knees hugging the porcelain princess asking God or anyone else that might be listening to please stop the pain. My stomach was empty so all I had was vile yellow bile which is tremendously acidic so as it exited up through my throat it really burned, and I had tears in my eyes for two reasons: (1) the pain was excruciating and (2) weight is very important and this was clearly contrary to that need. I didn't sleep much Wednesday night and repeated the process early Thursday morning. As a matter of fact, it must have been quite a visual as Diane was driving on the Blandinsville Road towards Burlington and there I was window rolled down puking all over the side of the car. When checking in Thursday, I am required to weigh in. I was down to 168.

I repeat, I repeat, I repeat--I do not intend to sugar coat things when there ain't no sugar and will tell it like it is. Now for the good news: they prescribed a liquid form of Reglan which is designed to move things along faster through the G.I. track. I ingest 2 teaspoons through PEG 30 minutes prior to any product through PEG. It seems to be working! I will consume 5 cans of product today--that is a major victory. I feel pretty good. Now today was chemo day and radiation so that generally is the case as in addition to my cisplatin/poison/chemo, I get potassium and a steriod and Emends anti-nausea medicine through the IV. It's always a long day as we are up at 4 a.m. for some "product" (I refuse to call it food) and we don't return home until after 5 p.m. The people at the local gas station love to see us these days. As this was chemo treatment number four of seven, I am at the 57% completion mark of chemo and 47% completion of radiation. Now that's some good news.

The radiation must be working because I'm happy to report that my ear ache is GONE! Also, the doctors examined my neck and the cancerous lymph node is GONE!!!

The worst is still ahead but hey we are making progress and really into this thing. FYI--for a guy who believed that the breakfast of champions is a banana, multi vitamin, and a Diet Coke, my new friends are Reglan; Emends, Zophran, Compasine (anti-nausea medicine); liquid Vicadin for pain; and Mirapex (my restless leg syndrome medication--we call it my leg Jimmy friend). All of these are now crushed and taken through PEG.

Ryan arrives home on Amtrak tonight, another welcome visitor, because as he always tells me, "that yard won't mow itself." On Sunday we shall take time to watch the Blackhawks--me in bed and Ryan in the lazy boy. It will be fun.

Night Time and P.M.A.

I generally turn off the lights between 9 and 10 p.m. after which Diane turns on my cold mist humidifier to help with my dry mouth. I then wake up every couple of hours due to (a) small bladder--nothing new here and (b) a mouth that feels like it is full of cotton. Fortunately, we have a table next to the bed where I keep a large glass of water. A new development yesterday: I can no longer take pills orally, even the little tiny ones. So Dr. Diane bought a pill crusher that allows me to take them through PEG with water.

Between 3 and 4 a.m., I'm up--that's just the way it is. Sometimes I can fall back asleep and then I join Diane between 4 and 5 at which time my morning regimen begins. I go to the sink and brush my teeth with special toothpaste and a soft brush. I do this early in the morning--I think 5 a.m. is early--as I can get through it before my gag reflex kicks in. Then it's off to the bedroom for a couple of cans of nutrients while I sit up quietly in the dark. And this is one of my reflective times of the day. Not very exciting but it works for me.

As for positive mental attitude (P.M.A.), I have come to the conclusion I actually have one! After 40 years of using the quote from Lincoln "People are about as happy as they make up their minds to be" is correct. While no one in our family to date has said, "Oh good, Dad has cancer!" I don't think any of us doubt for a moment that I will have a complete and total recovery. No other option seems viable or worthy of consideration. I really do believe that our path through life is about attitude, attitude, attitude. When I wake up in the morning and put my foot down on the floor, I really do smile and say "Good morning God" and not "Good God it's morning." Fortunately, I see roses and not the thorns that come with them.

I'm off to West Burlington by myself today and Diane will join me the rest of the week. Tomorrow the staff at the Cancer Care Center has consented to let Diane take a photo of me "en mask." I warn you in advance, this will not be for the faint hearted.