Greg Fisher's Living with Cancer
 

How It Began

In September 2002 I was diagnosed with Squamous Cell Carcinoma of the left tonsil and lymphoid in my neck. For a guy who had never been sick, never been in a hospital, and never smoked it was a shock.
My first treatment option was surgery which involved breaking my jaw and pulling it open to get at the tumors. Then doing a radical section of the neck removing a large portion to get all the lymphoids. After extensive reconstruction I would have limited mobility in my left arm.
I set out to find a better way. That way turned out to be radiation and chemotherapy. Once decided I quickly started a fourteen week program of daily radiation and weekly infusions of chemo Without going into too much detail it was a horror story. Because I had never been sick I thought I wasn’t allergic to any medicines, I was. An old black dog of mine (depression) reared its head until I found a counselor and a doctor with the right combination of drugs. The radiation and chemo caused sores in my month that were constantly oozing so at night I woke up every ten minutes to clear my throat. Somehow though I got through it - although it took two years after treatment to get back to normal.
 After that I would go in for a CAT scan every three months see the doctor. If there was anything suspicious we would investigate it further. Sometimes we would have something on the scan and we would just watch it for a couple of scans to see if it changed or went away. Most went away.
In 2006, however, a spot showed up on my shoulder and I complained of a “tickle” in my left lung. Upon further investigation tumors were found in my left humeral head (shoulder) and left lung. We again started a twelve-week course of radiation and chemotherapy. Because of the location of the cancer and the amount of radiation was less that on tenth of what I had before this treatment was not as bad - not recommended, but not bad.
Again I was back in for the scans every three months etc, etc. In 2008 a spot was found on my back on my eleventh rib in my lower back. Lymphoid involvement was found in the area also. This time the treatment prescribed was six months of chemo only. No radiation. Now let me tell you about these treatments. They are cumulative, you don’t feel bad the first week or maybe the fifth week but gradually you wear down and feel worse and worse. And all of these treatments lower the white blood cell counts. White blood cell are the ones that fight infection when they get too low the chemo has to be suspended until they can be brought back up.
By the fifth month we were having to stop treatment every other week because my white count was down. Then in February of 2009 we had a scan that showed no evidence of medastatic disease. We decided to continue the treatments for a few more weeks.
In early May we ran a CAT scan to confirm our February results before stopping the chemo. The scan showed a tumor on my eleventh rib with a suggestion of tumors elsewhere. The doctor immediately ordered a MRI and a PET scan for the next day. The next day, as I  was on the road to North Carolina, I was called and told to come back and begin radiation immediately. The next day in radiation I was told that the tumor on my eleventh rib was growing too close to my spine and they were afraid it was going to spread into my spinal column. Later when I went to see my oncologist the full story became clear. In addition to the tumor on my eleventh rib, I had a tumor wrapped around my aorta, a tumor in my left shoulder. In addition I had smaller places (that couldn’t be definitely ruled a tumor but were probably) on my left hip, my left lung, and my left sinuses. It was the worst report from a scan I’d ever had.
When my previous cancer had occurred Sandi and I had talked about getting another opinion - of going to The University of Texas MD Anderson Cancer Center in Houston and getting a work up.  When we talked to my oncologist, Dr. Thomas Seay, he didn’t think the cancer was that complicated that it was pretty straight forward. So, we didn’t go.
This time we've decided to go, and Dr. Seay agreed. Since this appeared to be a very aggressive cancer, there was a need for haste. So we immediately authorized the doctor to contact Anderson and get the arrangements started.

   

 

 MONDAY, FEBRUARY 8, 2010  

Greg's Memorial Service
Friday, February 12
10:30am
Magnolia Hall, Piedmont Park
(Click on the map to open a larger file with directions.)

In lieu of flowers, the family requests that donations be made to the St Joseph's Hospital Foundation Outpatient Oncology Center - Greg's favorite charity.

MONDAY, FEBRUARY 8, 2010  

Greg is at peace. Sometime between 3:00 and 6:30am, he stopped breathing as he slept.
   This ends his long and hard battle with cancer. Some might say he lost that fight, but I would say that his fight was not in vain. He won the precious time to see his girls become women and begin to find their paths. He always wanted a house on the water and his fight gave him the time to build it. His battle gave me, and many others, a look at true courage and a hope that we can learn to be so strong.
Sandi


TUESDAY, FEBRUARY 2, 2010  

Greg has been feeling really lousy. No energy, a good bit of pain, can’t focus his eyes or his mind. Hard to imagine; but he doesn’t even feel like reading. I expect Amazon to come do an intervention any minute - they’ve got to be missing their best customer.
   Yesterday, we had an appointment with Dr. Seay, the oncologist. It’s quite a production to get everything organized and get out the door. Ate breakfast at 7:00, rest a little, pills, shower, rest, shave, rest, load oxygen, pills and wheelchair and burn right out of here at 10:15. Then there is the drive to St. Jos, unload wheelchair, assemble, wrestle the oxygen tank out of the car, drag both through the parking lot, elevator, lobby, elevator, reception, history, lab and back waiting room. Then the nurse takes over. Believe it or not, it was all a rather frantic rush to get to an 11:00 appointment. Good thing I cheated and loaded the car on Sunday night!
   Greg’s red cell count has dropped dramatically since January 10th. The hemoglobin was 10.0 and now it’s 8.3. Dr. Seay is guessing that, if we factor in dehydration, his functional hemoglobin is more like 7.7.  Whatever - he’s severely anemic. This could account for the lack of energy and some of the confusion.
   The only help for that is a blood transfusion. He went to the infusion center and got two units of packed red cells yesterday and will be getting another this morning. I had expected to see a dramatic improvement in his shortness of breath and energy right away. Wrong. I can’t tell that there is any change in how he feels so far.
   He weighed in at 167.8 as compared to 191.6 on December 21st. So much for my home cooking. 
   Rest break is over. We’d better get hustling if we’re going to make it to Ginny’s on time for the transfusion. I’m reading Greg your emails, corny jokes and all, and he’s enjoying them. Thanks. Sandi

Email Greg

SUNDAY, JANUARY 31, 2010  

Sorry about not writing in so long. I have either been sick to my stomach, having bad headaches, or some other type of physical or computer ailment. As you know from previous posts, I am now under the care and feeding of Hospice Atlanta. It seems like my problems and their solutions are changing constantly. We keep chasing the latest symptom or side effect. I’m just trying to hang on.
   The medicine changes are keeping me a little loopy about half the time. I’m sorry that my correspondence is so limited today, but as I get to feeling better, the correspondence will improve. I appreciate the cards and emails. Sorry that I can’t answer each one.
   My best to all of you.

Email Greg

WEDNESDAY, JANUARY 27, 2010  

Long Time - No Blog
We’ve turned the office into Greg’s hospital room. When I have time to write, he’s asleep and I can’t get to the computer  (Pretty weak excuse, but that’s my story and I’m sticking to it.)
   It’s been another wild week. On Wednesday, the 20th, Greg had a Pleurex Thoracic Catheter System installed. This makes it possible for the nurse to hook a vacuum bottle to the tube in Greg’s chest and drain off the fluid as needed - sort of a thoracentesis to go.  From previous imaging, they were expecting to find three or four pockets of fluid. When the radiologist got a clear picture by CAT Scan, he saw more than forty isolated pockets.  Since it would be impossible to drain them all, they picked a couple they think are the biggest trouble makers and put the drain there. If it works, Greg’s breathing will be easier. We are cautiously optimistic.
   Swallowing has been a major problem this week. The high dose radiation in 2002 did some damage to Greg’s vocal chords. The primary result was what the girls called his “FM DJ Sound,” but there was also some swallowing trouble. By eating slowly and being extra-careful to prevent choking, he’s adapted pretty well - until the last week. It seemed like the problem just snowballed. Every day was worse than the day before. There was choking, strain and pain to swallow anything - liquid and solid. With a medication to relax his throat, and various adjustments in what he eats, I think we’re finally holding our own with the situation, as of today. Soft solids like applesauce and even spaghetti with sauce seem to work best and the very worst thing is pure water.
   With the combination of the disease and difficulty with the mechanics of eating, he hasn’t had much nutrition. It’s been very hard to get him interested in any foods or liquids. Of course, this is frightening to me since he’s already dropped maybe 20 pounds since Christmas. I’m trying hard not to turn into the stereotypical Jewish Mother and force-feed him three times a day. The plan is to make a variety of good things available six times a day and not worry if he’s not hungry. It should be easy to accept after thirty-one years - I will not be making Greg Fisher do anything he doesn’t want to do.
   It’s lights out time in the office. I promise to do some more and better blogging soon.
Sandi

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TUESDAY, JANUARY 19, 2010  

I have been neglecting my blog duties for the past few weeks. Thank god for Sandi. As mentioned before I am under the care of Hospice Atlanta now, which means the primary emphasis in on palliative care. I was surprised to learn Tuesday that I had only been with them for seven days. It has seemed like every day I have met with a nurse or social worker, or physical therapist, or nurse’s aid or having equipment delivered. Then on top of that there are meetings and so on. Yesterday, for instance, we had a two hour meeting with the nurse to go over what was working and what was not working, a three hour meeting with Mother (first time she has seen me since I went into hospice) that was very emotional, and finally, a meeting with the social worker Sandi, the girls and myself - also very emotional. The social worker deems those family meetings a success if one or more person cries. 
   Last night I had a very good night’s sleep and woke up feeling more refreshed than ever. Tomorrow I’m going to have my chest drained again. Depending upon how much fluid they find, I will have drain valves put in so that future draining can be done without going into the hospital. But, all in all, it was a good few days.

Email Greg

FRIDAY, JANUARY 15, 2010  

Sandi's writing for Greg’s Cancer and Souper Gourmet Blog
Some of you know we’ve been prime supporters of Souper Jenny’s for some time now. We still love her soups; but she closes at 5:00 and is all the way over on East Andrews and that isn’t always convenient. But now, we’ve got new sources: Ellen Steger was up from Tampa Tuesday and Wednesday. One look at my kitchen and she was off to the Publix and back with a bunch of instant soup packages by “Alessi” -  the one we’ve tried so far is Pasta Fazool Neapolitan Bean Soup, and it’s great. Then, Jason Cartee (Katie’s boyfriend) sent a stockpot full of his Cabbage and Kielbasa Soup - most delicious - move over Souper Jenny! We enjoyed a fine soup and the knowledge that our daughter is a smart girl - choosing a guy that is a good cook. As you can tell from the return to our favorite topic - food - things are getting better around here. 
   This is the only day of the last 10 days that Greg hasn’t met with a medical professional of some description. It was a nice break. I was beginning to think that all the instructions and information would make my head explode. We’re using the home hospice program out of Hospice Atlanta and think we’re off to a good start. They seem to be really on top of the medications that are used and how to get all the combinations working together instead of fighting each other. They are patient with our questions and thorough with their answers. Right now, Greg is pain free and the oxygen is making a big difference in how he feels. He’s sleeping in a hospital bed with the head elevated. We hope this will help his lung re-expand and recover from the damage that was caused by the pressure of having so much fluid in his chest cavity. It’s typical of cancers that have metastasized to the chest and caused pleural effusion once, to do it again and again.  We’ve got a plan in place for that. The first step is to see how rapidly it’s happening by going in next Friday to check.
   At one time Greg gave a little consideration to joining a Phase I Study in Houston. The way I understand things, a Phase I Study is the first test of a new chemotherapy regimen in humans.  The animal studies have shown some promise; but nobody knows whether the drugs will be successful in fighting cancer in people or what the side effects might be. The study he looked at was designed for patients with primary throat cancer and multiple metastases. It would have been appropriate for Greg. It only accepted patients with no tumors in the brain. When he was considering this, they ran a MRI of the brain to see if he would qualify. The results show that he now has a small brain tumor. 
   We were at Dr. Seay’s office yesterday.  The good news is that Greg’s white blood cell count has rebounded. It had gotten really low during chemotherapy, and now it’s getting back into the low end of the normal range. That means he won’t be quite so susceptible to infections. Can’t say they came up with much else that could be considered good news.
   The last week has been a whirlwind. (translation: nightmare). We’ve read your emails of encouragement and they helped us make it through. Thank you.

Email Greg

SUNDAY, JANUARY 10, 2010  

Just a quick note with more to follow later.
   Today I was released from the hospital. Last night I had a pain free, restful night and that meant sleep. Wonderful, glorious sleep. I don’t think I moved until 4:30am. So I felt good this morning. When Dr. Seay came in at 5:00am I asked him if I could go home he said," yes". So I’m home now.
   We hope to meet with the homecare nurse in a little while and get the homecare going. Thanks to all of you that sent notes and e-mails. I’ll write more when I have a little more time.
Greg

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FRIDAY, JANUARY 8, 2010
Another long day.
   All Wednesday night and Thursday, Greg was a regular snooze hound. He had rough treatment on Wednesday and was catching up from a few nights with little rest. So I took the sleeping to be a good sign that he was resting and healing.  
   Things turned around Thursday night. He couldn’t get comfortable to sleep, and this morning he was unable to catch his breath after even the least exertion. I talked to Dr. Seay (Greg’s oncologist) around 7am and he wanted us to go to the ER so they could do x-rays and rule out a “delayed pneumothorax.” A pneumothorax is a possibility any time they do a thoracentesis. They had checked Greg for that with an x-ray before they dismissed him Wednesday. But, Dr. Seay says it’s not unheard of to have this show up later. 
   So, as soon as the sun was up enough to see the ice on the roads, we went to the emergency room. The x-rays showed no pneumothorax; but a significant build-up of the fluid in his chest cavity. They did a standard thoracentesis directed by sonogram and did not get much fluid, less than 200cc. They then did a CAT scan to try to figure out what was going on and found flocculated pleural effusion way around the side of his right lung and up high. After about two hours of discussion between the ER physician, Dr. Seay, and the pulmonary specialist, they did a thoracentesis under CAT scan. I couldn’t stay in the room for this, but it’s my understanding that they scanned the area that had shown fluid earlier, repositioned him so they could get to it, rescanned him, and while the machine was telling them exactly where to go and how much, they drained the fluid. The volume was around 450cc - not much compared to the 2500cc they got on Wednesday. But Greg said that the spot that they stuck was precisely the spot that has been giving him stabbing pains every time he breathes deeply or coughs or hiccups. From the time they finished the procedure (5pm) to the time that I left (7pm) he had no pain in his chest. It’s been at least two weeks since I’ve heard that! I’m hoping that this will give him lots of relief.
   The Radiologist also saw some pneumonia and the ER started some IV antibiotics, Levaquin.  They admitted him to Saint Josephs and will probably keep him through the weekend so he can continue the antibiotics. He’s in room 380 if you’re looking for him - you might have to look hard - he’s down NINE Pounds since Monday. I know the fluid they drained accounts for some of this weight loss, but I’m blaming two foodless days in the ER for a few pounds, too!
Sandi

WEDNESDAY, JANUARY 6, 2010  

I’m filling in for Greg with a little update.
Sandi
   We spent a week in the Emergency Room today. Between Greg and his mother, I should be getting frequent shopper points out the kazoo at Saint Joseph’s.
   Greg got up this morning gray and unable to catch his breath. We got to the ER around 8:30am. Now we know the trick for cutting through the red tape…just go in looking gray. They had him in a bed with oxygen in less than five minutes. Then chest x-rays, then blood work, then more history and more vital signs. All this confirmed that he had a fluid buildup in his chest cavity that was making it impossible for his right lung to expand properly. So they sent him for a sonogram of his chest and a thoracentesis. They drained two and a half liters of fluid from his chest. No wonder he was turning gray! Then another chest x-ray. 
   After this, he still had some bad pains in his right chest, so they did a CAT scan to make sure he didn’t have a clot in his lung from the trauma of the procedure. No clot. We burned right out of there at 3:30pm. He is already breathing better, and, although far from pink and peppy, he’s a LOT better
   Tonight is likely to be a little rough as the irritated tissues un-stick and learn to re-expand. We’re told that he’ll feel significantly better tomorrow and better still the next day. That would be a good thing.
   The Hospice Atlanta people are supposed to come by tonight to talk through various levels of care and options. We want to get all their literature so we can have some time to think it all through. Although we’ve had a little experience talking to hospice nurses when Daddy was so sick and when Greg’s Uncle Cecil had hospice nurses come to his home in his last days, we really have a lot to learn in this area. I’m sure they will bring big piles of information.
  My iphone was on the blink today and, although we were able to read your emails while we were hanging around St. Jos, we couldn’t reply. But please know that your kind thoughts mean the world to both of us.

Email Greg

TUESDAY, JANUARY 5, 2010  
Yesterday I met with Dr. Seay to go over last week's scan. Of course, we already knew it was going to show that the disease was progressing, and sure enough that’s what the full report showed. 
   But I had expected Dr. Seay to have a new plan. He didn’t.
   He called M D Anderson to see if they had any suggestions. Other than repeating Phase I trials, they didn’t. A Phase I trial is like starting at the beginning. And note that there are no Phase II or III trials on going. 
   So this morning Sandi and I are talking about hospice care. Oh, when I asked Dr. Seay how long did I have, he shrugged like he didn’t know and then said 2 weeks, 6 weeks, 2 months. So as they say in the cartoons, “That’s all Folks.”

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FRIDAY, JANUARY 1, 2010
Happy New Year everybody. I hope everyone had a great party time last night, or, in the case of my generation, a good nights sleep.
   We had a good Christmas this year. Uncle Ferrell came up from Florida, I busted mother out of the rehab facility for the day, and James my nephew came as well as my girls.  Sandi prepared a delicious Christmas dinner with the help of Katie and Emily. It was nice to see everyone together and I think everyone had a good time.
   On Tuesday and Thursday I had PET scans. The first one on Tuesday didn’t work so I had to do it again on Thursday. Thursday night I got a call from Dr. Seay’s office with a preliminary report that I had fluid on my lungs probably caused by the cancer. After questions about my symptoms (I had none other than normal ones), it was decided that I would wait until Monday’s appointment with Dr. Seay to have the fluid drained off.  The PA I talked to had only a very preliminary report, but she indicated that the report stated, “the disease was progressing.” I’ll know more after my appointment on Monday.
   Thursday Mother and I met with a home healthcare representative.  The representative was very nice and indicated a very flexible arrangement to suit the client but mother rejected any possibility out of hand.
  Tomorrow is the annual OFWLC luncheon on beautiful Blackberry Mountain it will be good to see the ol’farts all together again.

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MONDAY, DECEMBER 21, 2009  

Sorry I’m late. Not much is happening here. Last Monday I finished this course of chemo (Gemzar), and Tuesday I finished my radiation. It will be six weeks before I can have another meaningful scan because the radiation leaves the areas “hot” giving false readings. Thursday and then Friday I had another toothache, which involved an emergency root canal on Friday afternoon. This dentist went to the “Painful School of Dentistry.” But I have to say by morning the pain that had involved the whole side of my face was completely gone. Monday I saw the nurse as a follow-up to my urinary tract infection and everything looked good. Next Monday I will see Dr. Seay. The med adjustments made by Dr. Hinson to help my depression are helping but it takes time, I have my good days and my not so good days.
  Mother is doing great in the rehab center - eating well, doing her physical therapy and getting her meds. Of course she is resisting/rejecting any suggestion of going anywhere but back home as well as any suggestion of any kind of home healthcare.
  I saw two very good movies this weekend. AVATAR lived up to its hype. As a scifi buff it was great watching a movie where every scene was full of images I had never seen, never even conceived - it blew me away. The other movie was The Blind Side. Sandi and I had both read the book, I will read anything by Michael Lewis, and the movie was very good. I think it’s the sleeper of the year having not been expected to do as well. If you didn’t know that it was Sandra Bullock in the lead role you would not recognize here at first, she really nails the role.
  Everyone have a Merry Christmas.

 

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MONDAY, DECEMBER 12, 2009  

I’m a little behind, please forgive me.
   On Wednesday, December 2nd I began radiation. They are hitting four spots on the right side of my body. After the first week of treatments I can feel the spots receiving radiation but the pain was lessoned some, not enough to eliminate the need for a pain pill at night but enough to eliminate the need for one any other time. Also, I wasn’t feeling well on Wednesday, and by that evening I was running a low fever (less than 101) but enough to make me feel miserable. Thursday I had Sandi take me to radiation, and we also called Dr Seay’s office. They said to come in. So we went in, got a blood culture drawn and a urine sample, and, after examining it, they determined I had a urinary tract infection. Three days of antibiotics, and I was as good as new.
   Just so you’ll know that my life is not completely taken up with medical necessities, on Thanksgiving Day we (Sandi, Katie, Emily & myself) went to the Lewis’s (Todd, Jeanie and Brooke) with some of their other friends and had a pot luck Thanksgiving dinner. It was real good -  good food, good conversation, and good company. I believe a nice time was had by all.
   Then the following Sunday Emily had been talking about this Korean restaurant, the Honey Pig, a friend had taken her to a couple of times. Although it was way out in the suburbs we went. Katie’s friend, Jason, and Emily’s friend, Perry, went with us. Each table has what looks like a wok in the middle on it with a burner underneath. They cook the meal right at your table, but they don’t cook in the wok they cook on the lid. The food was morsels of beef and pork, mushrooms of different types bean sprouts and a marinated cabbage. The meat was also marinated - one was a wine marinate and I forget the others. There were various sauces to dip your meat in - all were quite spicy (hot). Very different from anything I have ever had before but good and entertaining.
   Then this past Saturday I went out and got a Christmas tree. This particular tree was not that big, maybe seven feet tall and it look to be full enough. But the trees are shipped tightly bound to squeeze more on the truck. When I got it home and we put it up, it looked fine, but then after supper Sandi said. “Doesn’t the tree look bigger?” By this morning the tree had indeed relaxed and was occupying twice the space it had when it came home. I expect by Christmas we will unwrap our presents in the dining room because the tree has filled up the living room.
   More later…

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SATURDAY, NOVEMBER 28, 2009  

When we last heard from our hero he was trying to get a tooth pulled and waiting for a PET scan. 
   I decided that I would go through with the hyperbolic treatment as recommended by Dr. Fryer and have him pull the tooth. But I was unsuccessful in getting in touch with the hyperbolic people. Meanwhile the tooth was hurting more and more, so finally I gave up and called another surgeon. They were able to get me in that day (Wednesday), and they pulled the tooth without comment. Thus far everything is OK, but I’ll have the tooth socket checked next week.
   I had the PET scan as scheduled, and on Wednesday I got the results from the radiology group and Dr. Passert.  I’ll quote from the report. “Significant metastatic disease both in the chest wall, T-spine, mediastinum, right hilum, left pleural space, left humeral head and subscapularis muscle.” 
   This report is without Dr. Seay’s review and comments as he views these reports with more skepticism and sometimes can put things in a better light. But for right now -  bummer.

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SUNDAY, NOVEMBER 22, 2009  

Nothing can be taken for granted when you have cancer.
   Wednesday before last, the 1lth, while in Patalanda, I began having trouble sleeping because my left side hurt when I lay down. It was weird because I could lay on my left side and find a place where it didn’t hurt but if I laid on my right side it hurt like a son-of-bitch and I couldn’t sleep. At first I figured I had strained a muscle then as the pain continued at night only, I thought maybe the shingles were coming back. Then as the pain continued and actually got worse I was afraid that it was the cancer, possibly a tumor pressing on my spinal cord. I had a tumor at T-5 that we have been watching, but it hadn’t changed in over a year, and one at T-11, which we had radiated about a year ago. When I got back to Atlanta I couldn’t lay down any more, and I had to sleep in a chair. So Monday I called Dr. Seay and asked for some stronger pain medicine and a MRI of my spine.
   Tuesday I had the MRI. Now a MRI of the spine takes two hours in the machine with me laying on my back and remaining still. The MRI initially showed the T-5 tumor had slightly grown. So I was sent to the radiology department for possible radiation of that spot.  But, the radiology doctor, after reviewing the scan and consulting with other doctors, determined that the tumor at T-5 had not grown and was in his opinion benign. So, he has called for a PET scan to be performed this Tuesday, at 7:00AM. In the mean time, I took my pain medication every four hours, and by this weekend, the pain seemed to be less. I’ve been able to reduce the pain medicine to twice a day, and sometimes, to even be able to lie on my right side. So, we will see what turns up on Tuesday.  
   In the meantime, the saga of the tooth started. As I said before, I have a tooth, number 20 that my dentist wants to pull. So, he sent me to an oral surgeon Dr. Fryer.  Dr. Fryer made a very thorough examination with particular interest in my previous radiation treatment. He even went so far as to obtain my radiation records and talk to my radiation oncologist. The result is that he believes that I have osteoradionecrosis  which is I have no blood supply to my jawbone. This means that if I get an infection from the extraction it will be difficult to treat because there are no blood vessels to carry the antibiotics to the infection. The only treatment is to have hyperbolic chamber treatment to stimulate blood vessel growth. As an alternative I could have the hyperbolic treatment prior to the extraction to build up the blood vessels As an alternative to extracting the tooth, my dentist says he would do a root canal and grind the tooth down to the gum line and leave the root. I don’t like this option because it will leave the tooth without protective enamel and the tooth will continue to decay to where it will eventually have to be extracted anyway. I had told him to go ahead and pull the tooth anyway but he feels so strongly that I do have osteoradionecrosis that he will not pull it. So I’m stuck. More on this drama later.
   Other than the above, I feel good. The blood pressure issue seems to have lessened and my energy is good. So except for difficulty sleeping and a tooth ache, I’m in pretty good shape.

Email Greg

SUNDAY, NOVEMBER 15, 2009    

I’m sorry I haven’t updated in so long.  Things have been going well and I haven’t wanted to spoil my luck.
   The new chemo has minimal side effects - the most serious - it depletes my white and red blood cells. This week I couldn’t take chemo because my platelets were so low. That means next week, tomorrow, I’ll have chemo if my platelets have recovered  - even though I was originally suppose to have the week off. Three weeks on, one week off, three weeks back on, will now be four weeks straight of chemo.
   But it has been two good weeks. Last weekend Sandi and I went to Ellijay to David and Joanne’s and had a great weekend with them and John and Sandra Simank who were there also. It had been over a year since we had seen John and Sandra and it was good seeing them. John looked better than then last time I saw him, and  Joanne fed us until we were about to burst with wonderful food - good times.
   This week I came over to North Carolina, Patalanda, the street where our house is located, and again saw Jerry and Marcia King. Marcia also fed me a wonderful meal as usual. If I keep this up, the “cancer diet” is not going to work anymore. Jerry helped me with a couple of projects around the house and it was a nice, quiet week.
   This coming week I have a rash of doctors’ appointments. My lovely bride has a birthday tomorrow the 16th. And I also have to go to the dentist.

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FRIDAY, OCTOBER 30, 2009  

For the past two weeks I have had it good. 
   Last Tuesday night Sandi & I went to Patalanda and had a great time. We were joined Wednesday by Dave and Joanne Waddey Teffeteller for good company, good stories and good companionship with our good friends. (Dave puts this journal together for me every week).  Thanks guys.
   We came back Sunday, and Monday morning I started my new chemo treatment. I’m being given the Gemzar with a couple of pre drugs for nausea. Thus far the side effects have been minimal.  The first couple of days I had a little nausea, but it that was easily taken care of with a pill I have. This latter part of the week I have been a little more tired and having a little problem with my blood pressure but not too bad.
   While at Patalanda I bit on something hard, and some of my teeth began to hurt. So I have spent Thursday and part of today in a dentist chair. Yesterday I had a root canal on one tooth, and today I talked to a dentist about removing another tooth. There are lots of factors to consider when you have had radiation in the area so that is still to be determined. Oh, and I have a cavity to be filled.
   This weekend we are going to Asheville, North Carolina to see Howard and Susan Arnold -  always fun. Asheville is a neat town.

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MONDAY, OCTOBER 19, 2009  

I said that I shouldn’t get my hopes up.
The nodules on my right lung turned out to not be yeast infection but more of the cancer. Next Monday, October 26, 2009, I will start Gemzar a drug I haven’t had before. I’m not optimistic. We are going to Patalanda tomorrow night for a long weekend.
 

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THURSDAY, OCTOBER 15, 2009  

On Monday I reviewed the results of my scan with my doctor. As he said then - and many times before, my case is never simple nor straightforward. The scan showed multiple, new pulmonary nodules which were not seen on any of the previous exams. The largest of these is 6mm in diameter with numerous 4 mm nodules. All of these are on the right lung which has not been affected before.
Dr. Seay thinks that these could be caused by my yeast infection so he ordered a biopsy for Tuesday. That was the bad news; the good news is that everywhere else looked good with no new growths or nodules. So, Tuesday I went in and had the biopsy and will have the results on Monday the 19th.
   Wednesday morning I woke up with a slight fever, which could have been the result of the biopsy or the yeast infection. My blood pressure continues to be much better than it has been because I am still off chemo. I feel a little better everyday since I’ve been off the chemo. Dr. Seay says that if the nodules prove to be other than metastatic I will stay off chemo.
   I hate to get my hopes up, but I have.

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SUNDAY, OCTOBER 11, 2009  

Imagine a week where nothing happens. On Monday I saw my immunologist. The yeast infection is gone, but I have to take the medicine for another two weeks.

   Tuesday I drove over to Patalanda where I’ve been all week. I love this place. But did you know that stuff breaks even when we’re were not here?  I had to fix the telephone, one of the AC units and the Rodeo, but it was a good week.
   Tomorrow I get the results of my scan. Here’s hoping.


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SATURDAY, OCTOBER 3, 2009  

The fun just keeps on.
   Wednesday, seven days after the PCC line was installed it was removed. The results of Monday’s blood work indicated I now have a yeast infection in my blood. So Thursday I began intravenous infusions of drugs to cure the infection. Also chemo has been suspended until the infection could be eliminated.
   Monday the 5th is the date for my next scan, and I will know the results on the 12th, here’s hoping. Blood pressure is better but not 100%, but since I am suspending chemo for a while I’ll wait before increasing the dosage.
   I now have twelve doctors who are actively working to keep me alive. God bless America.

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TUESDAY SEPTEMBER 29, 2009  

I’m a little behind here. Last week was a real roller coaster week.
   On Monday I had the port-a-cath removed, a simple procedure. On Wednesday I had a PCC line installed.  Normally a specially-trained nurse using a sonogram places the line in your upper arm, but after three tries Mary had to give up.  The next step was to go to radiology where, under an x-ray, it was placed in about three minutes.
   Then Thursday, my lucky day, we started chemo again. I had been feeling good all week, but by Saturday I started felling the effects of dropping blood pressure again. By Sunday I was having one of my ten foot days - move ten feet and have to stop with my head down - really bad. On Monday I had to have some blood drawn to check that the blood infection was gone, and I got some fluid so I felt a little better. I also called my cardiologist, and today he got back to me doubling the dosage of my blood pressure medicine. Hopefully this will work.
   Today is my mother’s birthday. Happy Birthday Mom.
 

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FRIDAY, SEPTEMBER 18, 2009
Thank goodness, for once we had a week without drama. Monday they took out my port - a catheter. I had to go in everyday (as well as tomorrow) to get my antibiotic - boring.
   The blood pressure medication seems to be working, but the doctor is going to increase the dosage. We are making progress.
At this moment, I am in limbo as I have no appointments scheduled with Dr. Sealy - no chemo scheduled and no schedule to install the PICC line. But I'm sure I'll hear something soon.
 

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MONDAY, SEPTEMBER 14, 2009
When you last heard from our hero he had expressed cautious optimism. The caution proved justified.
Wednesday, September 2nd Sandi and I drove over to Patalanda. We had arranged for Sandi to give me fluids on Friday and Sunday, so I was excited. We got there about 7:30pm, and after setting up the house, rested. The next day we got up leisurely and messed around the house, but about 11:00am Sandi said she didn’t feel well and was going to lie down. About an hour later she announced she had a fever and it was probably the flu. By the use of Tylenol we about to knock down her fever for a few hours each cycle. Friday morning she felt better so we went out and did some shopping, but again the fever came back that afternoon - driving her again to the bed. Saturday the same thing repeated itself, but that afternoon I too developed a fever and took to bed. Sunday same routine except now there were two of us and the girls had come in Saturday night. I pretty much lay low all day, but Sandi was feeling somewhat better and moved around a little. Monday we drove back to Atlanta and I actually felt well enough to drive some of the way.
    Tuesday was chemo day and I got up and felt pretty good. At the infusion center they took the usual blood samples and hooked me up to get some fluids while we waited for the results of the blood test. About 9:00am I started getting cold and asked for a blanket. I continued to get cold until I was shaking violently - four blankets and all. They gave me some Tylenol and after about an hour the shaking subsided and I started to feel warmer. But this meant the flu was not gone so more blood samples, a urine sample and a sinus swab. The results of the nose swab came back that afternoon and indicated I did not have the flu. The blood samples would take longer so I went home feeling better. That night I had a fever again, but with the Tylenol I got it under control. The next morning I was going to stay home (I had been scheduled to get blood either Wednesday or Thursday), but I got a call from Dr Seay’s office saying they needed to see me - I had an infection in my blood. The exact “bug” was not known, but in consultation with the infections disease doctor I was to be given a broad-spectrum antibiotic intravenously. So back to the infusion center I went.
    The next day I went in for the blood, and my usual blood test indicated I was very low on potassium. But I had an appointment with a cardio doctor about my blood pressure and left before I could get the potassium. The cardiologist, Dr. Jordan, had some good news - he had a medication to help my low blood pressure problem.  After that I had to go back to the infusion center for the potassium. Previously it had been decided that my infusion port was contaminated with the infection and needed to be removed. It could not be used so I had a conventional IV in my arm. However, the arm IV would not take things as fast, so it was going to take four hours to infuse the potassium. I left the hospital at 9:00pm that night.
   The next day back to the infusion center for the antibiotic and potassium. By this time they had identified the infection as Enterobacter aerogenes - a bug that resided in my colon and escaped to the blood stream probably because of my low white blood cell count. It was decided to send me over to the infectious disease doctor, Dr. Maloney. He gave me another antibiotic and prescribed eight more days of the broad-spectrum antibiotic.
   So this morning I am going back to infusion for this antibiotic and at noon go into surgery to have my port removed. The plan now is to replace the port with something called a PCC line I’ll know more later.
    The good news is the blood pressure medicine seems to be working. We still may have to adjust the dosage, but I feel much better blood-pressure-wise. This probably reads like a frustrating experience, but I really marvel at the quality of care I’m getting. When I have a problem I am immediately sent to the appropriate specialist who is usually one of the top in his field in Atlanta. No waiting either, I go right then. Also the infusion center staff, as well as the other caregivers, are observant and catch the signs of any problem before it becomes too serious. I’m truly lucky to have this kind of care and very grateful for everyone’s efforts.
   Well, I’m off to infusion and surgery. I’ll be out of it for the rest of the day but next time you see your doctor give him a hug for me. They are the reason I’m still here.

TUESDAY, SEPTEMBER 1, 2009  

Things have been getting a little scary here lately. Last week was pretty normal - except since Wednesday my blood pressure hasn’t been a problem, nor has anything else for that matter. On Wednesday the doctors doubled the dosage of the fludrocortisone. Following  Dr. Seay’s theory regarding the cisplatin, I’ve been off it now been for three weeks. So maybe something is happening there.
   I saw Dr. Seay on Monday and asked him about the plan. He says that the present treatment will last approximately five more weeks. Then I’ll have a scan. If the scan shows improvement and the cancer is gone, I will go off treatment and have monthly scans, and then respond accordingly. Big change in prognosis from the MD Anderson report! Scary too.
   Today I had a sonar scan of my kidneys and will have appointments with a cardiologist and my neurosurgeon later. Tomorrow I will get some fluid from a home health nurse, and she will show Sandi how to give me the fluid while we are at Patalanda for the weekend. We will leave for Patalanda tomorrow after the nurse's visit.
   So, things go on - maybe for the better. Keep your fingers crossed.

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SATURDAY, AUGUST 22, 2009  

This has not been a good week. As previously noted, Tuesday has usually been my good day, but this week everything went downhill from there. Wednesday was nausea day with the “get nauseous, take a pill, the pill wears off, get nauseous again, etc”.
   Thursday the BP problem returned again, and I went in to get fluid and minerals but still didn’t feel all that great. Friday I had to get my white blood cells shot, and I got fluid and minerals too. But again still didn’t feel all that great.
   Today I didn’t feel very bad. But since we are going out to eat tonight with Uncle Ferrell, I wanted to feel up to it, so I went in and got pumped up. My potassium was low today, so that may have been why I haven’t been feeling that good lately.
   Ginny and Leslie (Dr Seay’s PA) are on the case about the BP. Ginny made up a chart with all my BP readings since June, and Leslie was going to get with a cardio vascular person to see what they thought was causing the problem. Lately, like today, I have been getting low BP readings while lying down, it was 70/51 today and that is worrisome.
   Sure hope something changes for the better soon I’m getting tired of this.

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TUESDAY, AUGUST 18, 2009  

This past weekend was great. We when to Ellijay on Saturday to visit our friends David and Joanne and had a really nice time. It was good to be somewhere other than the bed or the couch for a change. Then Sunday I was able to get some paperwork and bills taken care of, and my lovely and charming wife prepared a delicious meal for Katie and me Sunday night.
   Yesterday was chemo day and although my white cells were below minimum (60 points) they gave me chemo anyway. This will mean I have to go back in Friday and get a shot to boost my white cells. Today – Tuesday - is my good day, I believe it is because of the dexamethasone shot they give me with the chemo preconditioning. Whatever it is, I enjoy it.
   The change in chemo has produced no problems yet. I’m now getting taxol instead of taxotere, carboplatin instead of cisplatin and erbitux same as before. These are generally less toxic than what I was taking before and should have fewer side effects. Let’s hope that is true in my case, and that they are as effective against the cancer.
   It seems like everything would ease up a little bit when you have these kinds of distractions but that is not the case. Last Sunday we discovered that the condensate pump for the A/C had failed and was continuing to flood the basement. This had obviously been going on for some time (we never go downstairs anymore), and there was considerable mold growing on the walls and various other places. So we had to deal with insurance companies and remediation companies, and we are still dealing with them.  After the condensate pump problem was fixed the basement still would not dry out. Further checking revealed that the water heater was leaking.  So today I’m waiting for the plumber to come and replace the water heater. At least today being Tuesday I can deal with it.
 

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THURSDAY, AUGUST 13, 2009    

As I thought, yesterday my calcium, and potassium were normal and my magnesium was the highest it's been since this started.  That’s the good news. 
   The bad news is that I have developed shingles. Remind me never to brag about how good I feel again.
 

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WEDNESDAY, AUGUST 12, 2009    

Because of the low platelet count it has now been 16 days since my last chemo, and the difference is amazing. No low BP, no flu- like feeling, no nausea. I actually feel pretty good.
   Today I have to go in and get my blood checked and fluids and chemicals added if necessary. It will be interesting to see how things stand with that regard.
   The body is amazing as  it attempts to adapt to whatever you throw at it, and most of the time it does a pretty good job.
   So, I have five more days until my next scheduled chemo. I think I’ll be able to enjoy them.

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TUESDAY, AUGUST 11, 2009  

No chemo today. My platelets were too low, 96000. So I got fluids and some calcium and magnesium. Then I went to see Dr Seay. Due to a screw-up the radiologist did not compare the latest scan to a previous scan however Dr. Seay got a quick verbal comparison with a follow-up to come later. This analysis indicates that the chemo is working. There is reduction in size of some of the larger tumors and some of the lymph nodes that were jumping out swollen have disappeared. But generally we can say this chemo is working. That’s the good news.
   The bad news is that we are going to have to change the chemo. As noted this has been the second week that I have not been able to get chemo because of low platelet counts, we have also had problems with low white cell counts stopping chemo. So, if we were to continue with our present chemo combination we might be able to get in one week out of three but even that might drop as the effects build.
   In addition we have the effects on my body. Right now I have a low BP problem and a problem retaining electrolytes. This problem is not life threatening but it is a real pain and is not good for the long term. Monday, if I am able to take chemo, we will be dropping the cisplatin and substituting something else with possible other changes I’ll learn about then. Dr Seay is talking at least eight more weeks, and I suspect it will be longer than that if we can get these side effects worked out 
   I’m glad that the chemo is working. I’m nervous about changing to another combination, will it work, will it have side effects, what will be the side effects.
   I’m tired of doctors’ appointments, testing appointments, bottles of pills, feeling bad, not being able to do anything, missing doing stuff with my friends, missing the beach house. But as they say in Texas I’ve had a good run. Might as well keep the run going a long as I can. It does beat the alternative.
 

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MONDAY, AUGUST 10, 2009  

Another week that was. Last Monday - you’ve already heard about. Tuesday I was tired, but I managed to get my desk cleared off so you could at least see the top. Wednesday I went in and got fluids and minerals. Also Wednesday, I talked to Dr. Derr, the endocrinologist. After running all the tests she pronounced my endocrine system as operating within normal limits and said my problems were caused by the chemo. So the ball is back in Dr. Seay’s court. I see him today to get the results of my scan, and we will have some hard decisions to make if the present chemo combination is working. Maybe he will have some tricks up his sleeve.
   Thursday I was again very tired and didn’t get much of anything done. Friday I again went in for fluids and minerals and my calcium was within normal range. But magnesium was way off, my platelets were low, and of course my blood pressure was low. I actually fainted while Ginny was taking my standing BP.
   It's always weird, I’m standing there and I can feel the low BP coming on. I was reaching for her wrist to hold on when she was saying, “wake up, wake up Greg”, and I was laying back on the bed. Anyway that must have gotten everyone excited because about thirty minutes later Ginny said they were going to give me two units of blood (initially). I was there from 8am through the rest of the afternoon getting blood.
   That was interesting in the extreme care they use in handling blood. I had to have another blood test, and then they matched my blood to the blood they are going to give me - even mixing some and testing to make sure there compatible. Then when the blood is sent up it has to be signed for by the nurse, and when they administer it two nurses have to verify who I am and the specifics of the batch of blood. Also they only gave me red blood cells, no white cells and no platelets. My platelets were low but not low enough for blood platelets. 
   Well, talk about a new man. My blood pressure was back to normal when standing. I had some energy and no nausea. It was great. They still wanted me to come in the next day (Saturday) to be checked. So the next morning I was back. As I would have predicted my magnesium was still low, so I got fluids and magnesium. When I left the hospital I was a little nauseous, but BP was up and I still had energy. That afternoon Sandi and I decided to go to a movie, I took a nap until 6:00 (the movie time), but we were only a few minutes into the movie when I began to feeling really sick. I went to the restroom, got it calmed down, and went back to the movie. But here the nausea came again, so we left the movie and come home.
   Sunday I laid low and took it easy until the evening when the girls came over and we went out to eat. I did OK, with the only problem being that the low standing BP was back.
   So today, off to see the doctor, and we’ll see what he has to say.

MONDAY, AUGUST 3, 2009

No chemo today. My platelet count is supposed to be above 100,000 and mine was 88,000. Unfortunately that means I didn’t get that little something that stimulates me for a day and a half. So I’m going to be dragging tomorrow.
   I did get minerals, fluids and a scan. So next Monday I’ll get the results and we will see how the chemo is working. I believe it is doing some good because at the speed this started I’d have lumps all over me if I had continued to grow at that rate.

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SUNDAY, AUGUST 2, 2009  

Dr. SeayThis has been a yo-yo week.  Monday was infusion day and an appointment with Dr. Seay, the medical oncologist. I had a good meeting with him. He said that the fast growing nature of the cancer cells had an obvious downside; but that comes with the advantage of faster uptake of chemotherapy drugs by cancer cells and faster results from treatment. Finding the right combination of chemo agents is the key. He's setting up a new CAT scan soon. After that, we’ll know more.
   He has set me up with an endocrinologist to try to find the root cause of the electrolyte depletion that’s making me feel so bad. In the meantime, he has me going to the infusion center three times a week for fluids and to replenish the electrolytes that the labs show are really low on that particular day. In general we had a good discussion and I left there feeling more optimistic about my chances than at any time since May. Tuesday was a good day and I was on the go all day taking care of some appointments and errands.  Really tired, but encouraged to have a productive day. You’ll be happy to know that I finally got my hearing aids adjusted and started wearing them - I know Sandi is!
   Wednesday morning I felt awful. Sandi had to drive me to my appointment with the endocrinologist, Dr. Rachel Derr. She is doing some labs – we’ll get all the results within a week  Her first pass is that the electrolyte depletion and dehydration have nothing to do with the endocrine glands. She called back on Thursday and said that she had found some abnormal results on the thyroid studies and started me on a new medication. I’m not sure if that will be any help with the electrolytes. The possibility of hypothyroid deficiency was eliminated. I look forward to hearing from her with final results and impressions this week. Then we’ll figure out where to go from there. Not a moment too soon. I’m afraid I’m going to wear out my welcome at the infusion center - 5 trips this week, and I’m not feeling any better yet. Not quite true…I didn’t need any calcium or potassium today.  Just magnesium was low enough to require an IV and I do feel somewhat human now.Katie and Emily Fisher
   Katie and Emily are coming over tonight and I’m looking forward to an evening with all my girls.
 

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MONDAY, JULY 27, 2009  

We had to cancel a trip with the King's to Masonboro Island on Saturday but met them for lunch at Something Fishy instead.

Greg with Marcia and Jerry King at Something Fishy

A surprise visit from Tommy Absher, one of the Porter cousins, provided entertainment for Saturday afternoon. Then we headed back to Atlanta on Sunday.
   Another Monday, another day in the Infusion Center. My electrolytes were all bad but the magnesium was awful - so was the orthostatic hypotension (standing BP was 67/43 when Ginny checked it). So, my schedule has been revised. Now it’s three trips to St Joseph’s each week for labs, chemotherapy, fluids, supplements, electrolytes, and two bone marrow stimulants (one for red cells and one for white cells). Glad they are keeping up with all this; the paperwork alone would wear me out! 
   The plan is to try to get the side effects under control while they try to figure out what is behind the electrolyte/blood pressure drop situation. The current feeling is that there is some kind of damage to the adrenal glands or thyroid has gotten the hormones that regulate filtration and retention of electrolytes out of balance. Next stop… endocrine studies. Dr. Seay is setting me up with an endocrinologist to get to the bottom of this.
 

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FRIDAY, JULY 23, 2009  

The last week has been a roller coaster. Monday, Friday and Monday again found my electrolytes way out of control. I could have told them that without paying the lab. Numb face and leg means low calcium. Hypotension and black outs are probably low magnesium. And the joy of “hurt all over like you have the flu” seems to link with the really low potassium.
   You may remember the fun trip to St. Joseph's on July 3rd when they struggled for a day and a half before they got my blood pressure thing back within reasonable limits. They sent me home with a prescription for fludrocortisone. They told me that it was a high dosage...start it right away and reevaluate in about a week.
Instead of getting gradually better like I was supposed to, I got progressively and dramatically worse. When I was in for fluids last Friday, we got Ginny on the case. She pulled the hospital records and found that the take-home prescription was written for one dose every day at 8:00 am. CVS filled it as one every 8 hours. OOPs! So we have a clue about why things were going to hell in a hand-basket all the sudden. Tripling an already high dosage...not good. The moral of this story: trust, but verify
   This week has been dedicated to R&R and trying to get the overdose out of my system. What better place to do that than the house on Patalanda Road. We drove over late Monday night and have been enjoying the ocean breezes since. Sandi's brother, Ferrell Ard, stayed with us Wednesday afternoon and night on his way home from the Porter Family House Party.  It was great to see him and catch up. We all enjoyed the King family's hospitality at dinner. Somehow they and Ferrell have never crossed paths except for a quick minute at our wedding.

Chowing down at the Porter Family House Party. 100-150 people for supper each night. Breakfast and lunch are also served but for fewer people.  -  Ferrell Ard
  
We made it over to White Lake for dinner and the, always amazing, Porter Family House Party Talent Show. Susan Henry was head cook and led her team in laying out a really great dinner...especially that blueberry pudding with ice cream on top! Kudos to all!  It was great to see everyone.
   I think I hear the hammock calling - better get back to my rest plan.

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FRIDAY, JULY 17, 2009  

Greg has been pretty sick this week. Seems like they can’t get the electrolytes balanced and that has got him feeling awful! Dr. Byrd, our internist, is trying to figure it out. One possibility is that the big doses of  IV corticosteroids that he’s gotten with chemotherapy on Mondays…lots of Mondays… have caused Addison’s Disease or some other strangeness which shuts down the adrenal glands and keeps them from producing adequate hormones to regulate the retention/excretion of electrolytes and fluids.     Whatever is going on, it’s making him feel rotten. All this takes time to track down, but I think Dr. Byrd is really on the case and will help us figure this one out.
   Greg spent the day in the infusion center getting pumped back up and tanked up with magnesium and calcium. Hope that does the trick! He’ll go back to St. Joseph’s in the morning to check and see how well he’s holding onto them.
   With any luck, we’ll still be able to go to Patalanda Road next week. If so, this is where you’ll find me.

Sandi

 

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MONDAY, JULY 13, 2009  


I made it to Wilmington and (barely) back last week. The sudden fluctuations in blood pressure are really kicking my butt. I’ve gone on the three to one plan…three hours of napping and one hour up. That limits what gets done, but I can still juggle those “up” intervals and make some stuff happen.
   Jerry King and I got the hull painted on the sailboat with a little lot of help from Ricky Williams. It’s looking really good. A little anti-fouling paint on the bottom, reinstalling the hardware, launching it, stepping the mast, rigging the sail and we’ll be ready to try her out! Maybe we’ll be sailing by fall. We were rewarded for our hard labor with one of Marcia’s delicious dinners. That’s always worth the effort!
   On Saturday, I was getting in trouble with the hypotension episodes and came on home while I was still able. Today’s blood work was pretty bad. The white count was better, but they still want to give me the Neupogen on Friday. The worst part was the electrolytes. Magnesium, potassium and sodium were all pretty awful.  That’s what’s causing the hypotension. Something in this chemical stew they give me every Monday is making my body incapable of retaining these minerals no matter how much they give me orally or by IV. They are still trying to come up with something that will help, but we’re into trial and error on that.
   The car search goes on. We’ve looked at the Smart Car and are going to try out a Mini Cooper tomorrow night. Maybe we’ll look at the little Mazda 3, too. It will be tough parting with that fine Rodeo…had to put another battery in it last week. Thank goodness for guarantees. Sam’s Club is definitely loosing out on that one. This makes 4 times they have replaced it.
   Sandi and I are planning to drive up to Wilmington after treatment next Monday and enjoy some time at Patalanda Road and then some time at the Porter Family House Party. Come go with us if you can.

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TUESDAY, JULY 7, 2009  

After spending a month in the hospital last Thursday night, I’m glad to be home. I’ve always heard that hospitals were not a good place to rest and get well - Confirmed !! They gave me tons of fluids and a lot of intravenous magnesium, and the orthostatic hypotension got enough better to allow me to go home on Friday afternoon. I’m trying a new medication that we hope will keep this under control.

We were able to make it to the mountains for a really nice Fourth of July at David and Joanne’s cabin in Ellijay. As always, it was good to see the Lewises and the Sewells.
I was back at Saint Joseph’s for my chemo yesterday and it was (thankfully) uneventful. I saw Dr. Seay in the afternoon and he suggested another medication that may help with the BP problem. Nothing else new. It will be six more weeks before we can do a scan and see if the chemo is doing anything.
I’m planning to leave for Wilmington this morning for a few days of ocean breezes. If you’re free, let me know. I’d love to have company.
THURSDAY, JULY 2, 2009

I'm writing in Greg's journal because he's stuck at St. Joseph's for the night. The issues with his wildly fluctuating blood pressure started up again this morning, and we decided that he needed to go to the infusion center for some fluids.
In the past, a liter or two of saline with a little potassium or magnesium (if the labs found them low) straightened him out. He was at the infusion center with Ginny until 2:00 pm. She tried the usual tricks with no luck then took him on to the ER.
After a MRI and some blood work, he will be admitted. It sounds like they plan to keep him until they figure out a way to stabilize his blood pressure.
It's not looking good for the Fourth of July weekend on the shores of  Blackberry's Spring Lake. Maybe the Waddey-Teffeteller's cabin and their (always lovely) hospitality will be available another weekend.
Sandi
MONDAY, JUNE 29, 2009  

As the song says, "This is dedicated to the one I love."
This year, October, will mark the thirty-first year of Sandi’s and my marriage. It seems like I have always been with her, but at the same time it doesn’t feel like thirty years. We have been through a lot. I love her more than ever. Everyday I wonder how ended up with this wonderful woman for my wife. While I’m flying around emotionally, doing crazy things, thinking crazy ideas she is the voice that says, "Maybe we ought not do that."
When I am in one of my black moods and want to withdraw; she is the one that says come on, put on a clean shirt, we’re going out.  With all the discussion about what love is, for me there is nothing greater than having another person become part of you, to know and feel that other presence is there with you, in you. I am one of the luckiest men in the world in part because I have Sandi.
So I know this is a difficult time for you Sandi. It is difficult for me for you. But for all the past times together, for all the things we have done together, I will work to get through this and come out the other side even stronger.

Email Greg
SATURDAY, JUNE 27, 2009  

Chemotherapy started on Tuesday. Ginny, the angel of Saint Joseph’s, is overseeing my treatment once again. Injections with neupogen started on Friday. These injections are supposed to build up my white blood count so I can continue with therapy. The last time I had neulasta, and it took about three weeks to get the bone marrow to respond and start producing neutrophils. I’m low already (from the treatments last fall) so it may be a foot race between the chemo regimen lowering my counts and the neupogen trying to raise them. Thursday was the only really bad day this week, so I’m feeling pretty lucky.

The ongoing challenge is this strange yo-yo thing going on with my blood pressure. It’s fine if I stay put; but when I’m lying down and try to sit up, or sitting and try to stand, or standing and try to move, it drops and I feel all dizzy and woozy. Then it passes until the next time. The proper name for this is orthostatic hypotension. Jenny has the hospital pharmacist doing some research on this, and she and I have a consultation scheduled for Tuesday while I’m in the infusion center. This pharmacist is really on top of drug interactions and side effects related to chemotherapy, and I hope she will be able to get this figured out. She’d better, because Sandi will be seriously chapped if I fall and split my head open again. (editor’s note: last sentence contributed by SAF)
TUESDAY, JUNE 23, 2009
Chemo starts today. Cisplatin, erbitux, and taxotere - once a week. I'll be checked in eight weeks to determine if this treatment is doing any good. I'm beginning to have little aches and pains, so I'll see how it work.

SATURDAY, JUNE 20, 2009
Well, the day has finally arrived. After two scans, blood tests, forty pages of questions, interviews with the radiation oncologist, the medical oncologist, the surgeon and all the doctors getting together to review my case it was time to get the word.
Dr. Gary ClaymanWe had to wait over two hours past our appointment time the see the doctor.  Finally, Dr. Clayman came in the examining room to see us.
He started his presentation with, “Mr. Fisher, you have had a very good run. You have really beaten the odds - twice.”  He then went on to review what they found - multiple bone tumors in my ribs, vertebrae and shoulder and one tumor in my lung.
Dr. LuBased upon what they had seen they would agree with the present course of radiation therapy and Dr. Seay’s plan of a taxol based chemo plus one of the platinum drugs to boost it’s efficacy.  Dr. Lu, the medical oncologist at M.D. Andersen, has been in contact with Dr. Seay, my medical oncologist here in Atlanta, and they discussed the plan.Dr. Thomas Seay MD Anderson also recommended a drug I’ve never heard of - I think it makes the other meds penetrate bone more effectively. 
The other option presented was an experimental drug trial. That would be a long shot; but it is available. He wished me luck, and that was it.
It was a good trip in that I now know that we aren’t overlooking some fabulous quick and easy cure. Everybody is on the same page.
 
WEDNESDAY, JUNE 10, 2009
Well we are here at MD Anderson. This place is big. It's in an area of Houston that is called the Medical Center - probably 10 to 20 blocks of high rise hospitals, medical centers, research centers etc. Anderson alone handles 70,000 patients a year 30,000 of them new.  So, they know the drill. They even own a hotel which is run by Marriott and connected to the Medical Center.
Monday started at 6:30am with my first appointment. I filled out form after form and met with two different doctors in the head and neck section. They were both surgeons, but that is usually the case for head and neck cancers. The ENTs are the first in line.
The next day I had a CT scan and a PET scan. The preparation for them was much stricter here that I have seen before - no food and no beverages other than water for 6 hours before the procedures.
Today is a day off - no appointments, no exams. Then tomorrow we meet with the medical oncologist and the radiologist. Tomorrow night they are supposed to have a meeting about my case.
There has been a little screw-up in that I don't get the results until Monday. So we have to stay over the weekend. We have told the staff that our stay-over is contingent on their ability to change our flights without charge. If they can't we will come back Saturday. 
That's it. I get the impression that because this is big place, there is a bunch of standard procedures, and you are forced into one of these procedures. But I am impressed - they know their stuff.
 
SUNDAY, JUNE 7, 2009
Sandi and Greg left today for Houston and the MD Anderson Cancer Center. I will post a report as soon as I have it.
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