Sunday, September 6, 2009

Unfortunately, we had more trouble accessing the internet in Houston than we expected so the blog did not get updated as often as we wanted. My appologies for that.

The surgery went as well as we had hoped. I spent 6 days in the hospital after the surgery and was released on Saturday the 29th and had a couple of followups last week. We left Houston on Friday the fourth and arrived home last night (9/5) about 4:30.

I did have some minor complications, relatively speaking. The valve in my stomach that allows food to pass into the small intestin was not working and they had to go back in with an endoscope and dilate the valve. That will have to be followed up here in Albuquerque next week. Also my vocal chords are paralyzed so I can only whisper. We were told that this is a temporary thing and may clear up by itself. If not there are a couple of options to fix it.

Anyway, the whole thing was, overall, a huge success and I will have a month or two of recuperation. I am so grateful to you all for your good wishes and prayers during this difficult time.

Friday, August 21, 2009

All the test results are back and everything is go for the operation. We are scheduled for Monday 8/24. We haven't got a time yet, but it will be in the morning. The surgeon says it will be about a 5 hour operation. Fortuneately, I get to sleep through it. Assuming there are no complications I will be in the hospital for 5-6 days, then released to go back to the motel. I will have a check up after a couple of days and then released to go back to Albuquerque, so we could conceivably be back by the 4th or 5th of September. So, we'll try to update you next week after we have news.

Friday, August 14, 2009

Here we are in Houston. This is a huge hospital, but very well organized and everyone we have had contact with has been very nice and caring. We checked in Wednesday morning at 8:00, met with the surgeon, and had a bunch of tests. An EKG, blood panel, chest x-ray, pulmonary function test, and a CT scan. There had been a power outage earlier in the day so there was a huge backlog in the CT area and we didn't get out of the hospital until after 8:00 PM. I had a PET scan yesterday afternoon and met with an anesthesiologist this morning.

There has been a change in my scheduled appointments for Monday. Instead of having an endoscopy in the GI clinic the surgeon is going to do the endoscopy himself with ultrasound. In addition he is going to do a laproscopic procedure to biopsy a spot on my left lung. If that biopsy turns out to be metastisis then there will be no further surgery. If it is negative then the esophogectomy will be scheduled as soon as possible. We will meet with the surgeon again on Wednesday 8/19 and all will be clarified at that time.

Saturday, August 8, 2009

Well, here I have let a lot of time go by without updating, but here I am again.

Sally and I took a long vacation in July, driving to the Black Hills for Sally's mother's family reunion, then spent several days with our close friend Suzie in Boulder (Colo.), then on to Eastern Colorado for my mother's family reunion. We really enjoyed the trip. The Black Hills are one of our favorite spots to visit and it was particularly pretty this year as they have had lots of rain and everythind was very green and lots of wild flowers everywhere. And of course lots of visiting with family. Colorado was also especially pretty and green as they have also had lots of rain. We drove out to my Grandparent's old farm north east of Akron and spent half a day wandering around there. I got very tired but had time to rest up for the family picnic. And again lots of visiting and catching up with family there.

Now we are getting ready for our next great adventure. We are leaving Monday (Aug. 10) to drive down to Houston for my operation. I have appointments scheduled for all day Wednesday and beyond for a series of tests; xrays, EKG, blood panel, CT scan, PET scan, pulmonary function, and on and on. The operation is not scheduled yet, they will wait until the results of all the tests are back and then will depend on the surgeon's schedule (of course). So, at this point, we don't know how long we will be in Houston. I am expecting to have to be there at least three weeks and possibly as long as five or longer. If there is a long wait between the tests and the surgery schedule we will probably come back to Albuquerque, then drive back down for the surgery. I expect to be in the hospital for a week after the surgery, then another week staying around for out-patient follow-ups before we can come home.

Sally's son Pete will be staying in the house while we are gone and our good friend Gypsy Jane from Arizona will be staying in Albuquerque and helping out with the cats, etc., and our friend Roger has offered to come water the garden. In addition another group from the church will be coming to weed and trim, etc. Sally and I often comment how rich we are in having such good friends, and all this just reaffirms the feeling.

Sunday, July 5, 2009

The Great news is NO MORE CHEMO. I am slowly recovering from the effects of the chemo. The last chemo was very hard as each chemo was harder than the one before. I had a total of 4 treatments.

My taste and smell are not recovering. I have a horrible chemical taste in my mouth all the time and everything tastes bad. People tell us that the taste will come back in a matter of weeks. None to seem for me. In the meantime I am still getting nourishment through the feeding tube.

I had an appointment with a local surgeon last Wednesday (7/1). He will confer with my oncologist and the surgeon at the MD Anderson Hospital in Houston. I have an appointment with the medical oncologist next Wednesday. We will find out more about when and where at that time. We are still expecting the surgery to be done in Houston sometime in early August.

We are planning to go to 2 family reunions the 3rd and 4th weekends in July. We expect to be gone July 15 thru July 27 0r 28. We will be in the Black Hills in South Dakota for the 1st one and in Eastern Colorado for the 2nd reunion. Sally's Mom's family and my Mom's family.

I will enter the news from next Wednesday's doctor appointment in a more timely manner.

Wednesday, May 6, 2009

It has been a very long time since we updated this. I finished the last chemo on March 27th and finished the radiation on April Fools Day. The last chemo was very rough and the recovery was also a hard time.

I had PET/CT scans on Monday 5/4. We saw the Doctor today and got the results. They were not what we had hoped. The original cancer has been reduced but it has spread to lymph nodes within the upper chest cavity. This means that I have to go for two more rounds of chemo. This will start next Monday. They will use the same drugs as before plus another even more toxic drug, if I can take it. Not looking forward to this. At this point in time surgery is postponed

The plan is to do a series of 2 chemo treatments 3 weeks apart. The drugs used will be cicplatin, 5FU and Taxotere (dosetaxel). PET/CT scans will be done following the chemo treatments. At that time the treatment plan will be reevaluated.

We really appreciate all of the support we have received. We need your support now even more than before. Keep your good thoughts and prayers coming.

(Sally) One of the things that I have learned is not to plan on anything too far in the future.

Wednesday, March 11, 2009

I am home now. I got home last thursday evening about 4:00. They sent me home with orders for a clear liquid diet and the feeding tube which is 24 hours a day.. I am getting all my nourishment through the feeding tube and apparently will be for the next 4 weeks at least. I have gotten permission from the doctor's office to add food by mouth as I can tolerate it, but I can see that that will only be a supplement to the feeding tube.

I am feeling quite weak and rung out right now. I can move around and try to move several times a day but of course have to drag my tether everywhere. We have a home health care nurse who will be coming twice a week to check on things.

We went and saw my oncologist on Monday. He does not think I lost any ground because of the two weeks in the hospital. Of course, I did lose the 2 weeks, but not more. I have restarted the radiation treatments daily (5 times a week with weekends off). I will get 2 weeks of that then I go in for the next round of chemo, which will be the last, then 2 more weeks of just radiation. After that will be a period of recovery from all the abuse and then they will operate to remove the part of the esophogus where the cancer is located. Of course all this is not new, we are back on the original schedule, a couple of weeks late.

Wednesday, February 25, 2009

Well here it is Wednesday the 25th day of February. Don was supposed to be halfway through his 3rd week of chemo/radiation therapy.  

Yesterday Don was much better, at least emotionally. When I got to the hospital yesterday the drainage from the NG tube was opaque white. This is much better than Green. He had demanded that his surgeon be called. The charge nurse came in and talked to him about this request. She told him that sometimes this change happens but it does not necessarily mean that the blockage has gone away. Eventually the surgeon did come in to see Don. He agreed that the blockage might be gone. He ordered an upper GI series to make sure.

Today the drainage had changed back to green though not quite as dark as it had been a couple of days ago. Don was quite upset about this. He had just been told that he would be going do radiology for the Upper GI studies. He was told 15 minutes and he tends to take things very literally so when 16 minutes had gone by he was upset. I told him that the only time things happen quickly is if it is a true emergency. It takes time for the transporter to arrive to take him to radiology. If all of the transporters are busy it is necessary to wait for the first one to finish with his last transport. Don just wants everything to happen right now. The transporter did arrive and took him to radiology.

When Don came back he was really cranky and wanted pain medicine "right now". So he called the nurse and demanded pain med right now. I connected his NG tube to suction. He began to get some relief but it was slow. The nurse came with the pain med. (He gets IV morphine). I irrigated the NG tube a couple of times. He still had a lot of the barium in his stomach. I am sure this was very uncomfortable. But he did admit that the feeling of fullness was diminishing. I did talk to him about being nicer to the staff. I asked him if anyone had talked to him about the exam. He said no but it looked to him as if nothing was going on through. So I don't know what to think at this point. 

If I get anymore information I will post it. 


Monday, February 23, 2009

More on Don's Little Friend

            CAUTION     CAUTION     CAUTION

The following posting contains information that some might find offensive. If you don's find it offensive there's something  wrong.

Last Friday Don had a feeding tube placed in his jejunum (the part of the small intestine that is closest to the stomach). They entered through the stomach then pushed the tube through the pyloric valve and into the jejunum. The surgeon had planned to leave the tip in the stomach (which is preferable) but he couldn't because Don's anatomy is very abnormal. Most of his stomach has migrated through the hiatal hernia into his chest. This means that the lower part of the stomach is much smaller than it would be under normal circumstances. But then did anyone think that Don was "normal"?

Saturday: So, after surgery everyone thought that all was OK and Don actually had one of any hospitals best meals; the famous clear liquid diet. He nibbled on it a little but did not want much. This was on Saturday morning. He got the same thing for lunch but did not even try to to eat any. By early afternoon he was beginning to have increasing nausea and vomiting which continued throughout the night in spite of being given various anti-nausea medications. 

Sunday: Sometime around O dark 30 it was decided that Don should be transferred from Kaseman hospital to the Presbyterian main hospital downtown. Various tests are more readily available at the main hospital. So Don arrived there at about 6:30 and I got there a little after 7:00 am. He was continuing to vomit copious amounts of gastric fluid. He had more than 2 liters out while I was there. Finally the doctors decided that maybe  a nasal gastric tube would be a good idea in order to keep his stomach empty. This was finally done in the early afternoon and Don began to feel a little bit better. He put out another 2-3 liters through the NG tube. This is the lovely green gastric fluid and bile. Better out through the tube then vie emesis. Bile really tastes vile! Through the afternoon and early evening he was supposed to be drinking contrast material for a CT scan to wee what was stopping the gastric juices from flowing through the small intestine. He did have the CT Scan and was told that they got good pictures. I am not sure what that means.

Monday: The surgeon was in to see Don and I just happened to call while he was there. I asked him what the CT had shown about the blockage. He said that he didn't see a blockage. Then when are the gastric juices coming up instead of going down the digestive track to the exit? Don is really uncomfortable and wants this whole business over with. He is very cranky and crabby! I think that the feeding tube should have been inserted before he needed it rather than now when he i really feeling the effects of the chemo/radiation therapy. He was in better health and better able to deal with the surgery and it's aftermath. If this ever comes up again, and I hope it does not, I will know where to draw the line in the sand.

He continues to put out 6 - 8 liters of this wonderful gastric fluid every 24 hours. 

Today Don is doing some reading and watching the news on CNN and other stations. I am not sure whether  this is a good or bad sign.

He has had visitors and is very appreciative of this. He continues to be very reassured by the fact that so many people are keeping him in their thoughts and prayers. One of my clients plays piano for the Sunday evening worship services at one of the Baptist Churches in town. When I saw her on Sunday she asked me if she should ask then to pray for Don I said" absolutely". You cannot have too many good thoughts and prayers. I asked her today if the Baptists had prayed for him and she said: "They sure did."

I stayed at the hospital until about 5:45. I got home at about 6:30. (It didn't take very long for me to get home it just took a long time to find the car. I had to ask hospital security to help me find it. I thought that it had been stolen. The security person said that this happens often. I did not feel quite so stupid when he told me that.) Anyhow, right after I got home Don called and said that both the surgeon and medical oncologist had been in to see him. They are going to have interventional radiology look at him to see what if going on with the placement of the feeding tube. Hopefully this will be done first thing in the morning. They will do their thing using fluoroscopy. I am hoping that we will know more by tomorrow noon. I will update when there is something else to report.


Friday, February 20, 2009

I can't quite wrap my mind around the idea of prayer. A thought, a spoken thought, a ritual, the more I think about it the more it seems to escape being wrapped into a nice tight bundle. I sure can't wrap my mind around the idea that a thought could change the universe, even in such a small way as to affect the course of an individual's disease. I do know that my knowing of your kind thoughts and prayers is very important to me. Sally and I often remark how rich we are in our community of friends and family. You are in my thoughts as I am in yours. Thank you.

Wednesday, February 18, 2009

Wednesday 2/18: At my last check up I had lost a lot of weight, about 15 lb. I have reported my difficulty getting enough calories with my lack of appetite and finding nothing very appealing, but I thought I was doing pretty good. The large weight loss was a surprise to me. Well, the upshot of it all is that we have decided to go ahead and have a feeding tube inserted. This is normally an outpatient surgical procedure but because of the way my stomach is pushed up into my chest and because of the cancer, the doctor is planning on my staying in the hospital overnight. So this is scheduled for Friday afternoon and home on Saturday. I’m not really looking forward to this, but I think it is really the only way for me to keep my weight up given the struggle I have had eating enough. I will continue to eat as much as I can and then use the feeding tube to supplement calories as needed.

While all this discussion was taking place, they took a blood sample (normal procedure for someone doing chemo) and it turns out my kidney function is not what it should be, so I had to go back to the infusion clinic and had 2 liters of normal saline solution through the port and have to go back tomorrow for another 2 liters. Kind of flush out the system. It turns out that this is a common effect of the cisplatin chemo that I was given last week, but a complication I didn’t appreciate while I am trying to get psyched up for this surgical procedure.
In the middle of all this, Sally has come down with a really bad sore throat, possibly strep. She had a culture taken today and we will know tomorrow. Probably all the stress, which she has been feeling more than I have, has reduced her resistance. Anyway we really make a pair right now.

Saturday, February 14, 2009

The first week is done and I must report that I had no real bad reactions to the radiation or the chemo. The chemo ran out on Friday morning and we went in to have the pump and attendant hoses removed after the radiation treatment. I have definitely started to feel better after the chemo was done (and I was able to stop the drugs they were giving me to help deal with the effects of that). These treatments are very powerful and you need powerful drugs to help deal with what they are doing to my body, but all the drugs also have side effects and pretty soon I don't know which ones are doing what to me. The main thing I have noticed so far has been a huge loss of energy, I think that is primarily from the radiation treatments. I spent most of Thursday afternoon and almost all of Friday sleeping. The inside of my mouth feels like sunburn as does the lining of my esophagus, but so far it has not been very bad. And I have a weekend to recover. The cells in the mouth and esophagus are especially sensitive to the radiation and I have been warned to be sure and keep it as clean as possible to prevent infectious sores from forming. Since I have a constant reminder of what it feels like, that is real easy to remember. Another problem is the loss of appetite. Nothing tastes very good any more and it is hard to think of things to eat to keep my strength up. I'm trying to do lots of small meals or snacks which means lots of tooth brushing.

Monday, February 9, 2009

Well, it's 4:00 on Monday and we have gotten through the first day. I was there from 8:30 till 3:00, Sally was in and out as she had business to take care of. The first thing the nurse did was insert a special needle into the port in my chest which had a tube to connect whatever infusions, etc.
She took blood samples first to get a base reading. Then she infused liquid zofran, an antinausea medication. Then there was an hour of piping in a liter of normal saline solution with potassium chloride, this to get my kidneys going. That part worked great. They give a lot of liquid during the chemo to keep the kidneys flushed out as the kidneys could otherwise collect the chemo and be damaged. After the normal saline, she started the cisplatin which ran in for about 2 hours followed by another liter of the normal saline. When that was finished she attached the pump, which is loaded with '5FU' which will be slowly dripped for the rest of this week. I'm not sure what '5FU' stands for, I'm pretty sure it doesn't stand for what I first thought.

While we were getting set up I mentioned to the nurse that she should mention to the doctor that he needs to get the prescriptions for the anti nausea medications to the patients earlier so that they can deal with the pharmacists and the problem of getting prior authorization. She said she would talk to the pharmacist there. She came back in 5 minutes and said that all had been authorized and they had called my pharmacist and the meds would be available this afternoon, including the maranol. Someone over there has clout!

When we finished up in the chemo room, we went over to the radiation lab and got the first shot of radiation. The radiation only takes about 1/2 hour, start to finish. The machine they use is fascinating, I'll try to get a description together to post later. I'll be getting radiation every weekday for the next 6 weeks. The chemo thing will only be done twice, today and again in 3 weeks.

I can't emphasize enough how caring and compassionate everyone we have been dealing with are. It has been amazing.

And so many of you have sent your good wishes, I want you to know that is very important to us. It helps give me courage to face all of this. Thank you so much.

Sunday, February 8, 2009

Well, so I have had a lot of poking and prodding this week. On Monday I met the radiation oncologist who will be overseeing the radiation part of the treatment. He said he does not think that the treatment will irritate the esophagus to the point where I won't be able to swallow so did not recommend that I have the stomach tube inserted. If the radiation does irritate to that point I can have the tube implanted then. On Tuesday I got tattooed on the chest (three small dots) which will give the people who will be doing the radiation points to aim at. This was done by using a CAT scan to look inside to see where the radiation needs to go. The same machine will be used to do the radiation which allows them to shoot the radiation from all directions.

On Wednesday I had the 'port' put in. This is a small cylinder with a flexible top that is implanted under the skin on my chest with a catheter that runs into the jugular vein and then threaded down to my heart. This device will be used for injecting the chemo and can also be used for blood draws for lab work. It itches like crazy now (4 days later) as the incisions heal.

Thursday I met with the oncologist again (two different doctors, one for the radiation and one for the chemo) and he again went over what the treatments are going to be and prescribed 3 different anti-nausea medications. When I took them to the pharmacy and asked the prices for these they said one of them (Emend) costs $374 for 3 pills, another (Zofran - ondansetron) costs $325 for a 30 day supply and the third (maranol) costs $800 for a thirty day supply. At this time only the Emend is covered by the insurance and the pharmacy is still trying to get approval from the insurance company for the others. I have also started the process to get a permit for medical marijuana from the state, though I don't know if that will move fast enough to do me any good. They have no licensed suppliers in New Mexico as yet, the law just went into effect in January and they have applications but nothing has been approved yet.

On Friday I had the ultrasound exam of the area and the GI doctor found that the cancer is localized in the wall of the esophagus with possibly one lymph node immediately adjacent involved. Altogether good news as that means that the cancer should be treatable by the plan that has been worked out.

The next step will be to start the treatments. I will start the chemo on Monday (2/9) morning and the radiation Monday afternoon. I can't say that I am looking forward to this but it is a part of the journey that has to be gone through. I don't really have a very good idea what to expect but the nurse in the chemo clinic assures me that this is going to be a whole lot of NO fun.

I know that I am extremely grateful for all the support I have been receiving from our friends and family. I helpls make it all bearable.

Saturday, January 31, 2009

Since you found your way here you probably already know that Don has been given a little surprise in the form of cancer cells.  We decided to start this blog as a way to keep everyone informed about what is going on with the diagnosis and treatment.

First a little history:  I had a blood test of a routine nature early this month (January 09) which showed anemia.  My primary care physician sent me for an upper endoscopy and colonoscopy in an effort to find out what was going on with that.  When the GI doctor looked down my esophagus he found some changes (Barret's Esophagus) that led him to take a biopsy.  He found some cancer cells.  He started to put together a team of medical people to deal with this and had his office set up appointments with a doctor to do ultrasound of the area, an oncologist, and a surgeon in the week following the original endoscopy.  It turned out that all the appointments got changed before I went to any of them.  

I did meet with the oncologist on Saturday morning (January 24) and he discussed what the findings up to that point were and what it meant.   He also talked about what the treatment plan would be, subject to findings from further tests.  The treatment plan he described involves a combination of radiation and chemo therapy which has a multiplier effect over doing these therapies separately.  The radiation will be done 5 times a week over a 6 week period with the chemo (2 different drugs) being injected during the 1st and 3rd weeks of the radiation.  One drug (cisplatin) will be injected and the other (5FU) will be administered by a pump over a 5 day period.  To facilitate this I will have a 'port' inserted in my chest which can also be used for blood draws and thus save having to find a vein to stick the needle in every time.  In addition, the doctor says that the radiation will irritate the esophagus to the point where I will be unable to swallow so I will have a tube inserted in my stomach (through the abdomen) for feeding.  When that course of treatment is finished then surgery will be scheduled to remove any remaining cancer and the whole thing sewed back together.

 He set me up with radiology for a PET/CT scan on January 28.  The preliminary results from that were available on Friday the 30th.  They showed that the cancer is well contained in the esophagus without any indication of spreading and therefore more easily treated.  I now have appointments with the radiological oncologist on Monday, with outpatient surgery to place the port on Wednesday (happy birthday, Don!) and with the oncologist on Friday.  In addition I will have an appointment with the ultrasound guy (still to be set up) and with a nurse to discuss what the treatment will involve and the side effects to expect, etc.  At some point either this week or next I expect to have the stomach tube placed.  I will then start the radiation/chemo either on Monday, 2/9 or the following Monday, 2/16.

I expect the next post will be after all the fun described above has happened and I will have considerable more information.