U of M Update

Monday we finally had the appointment in Ann Arbor at the University of Michigan Hospital. They looked at the CAT Scan CD that we brought with us, and noticed that it was inconclusive due to being done with no contrast. So, now he has to have another one on July 15th with contrast. This problem with his throat and neck could be either 1) A delayed effect from radiation, affecting the ligament in his neck. If this is the case, there is nothing to do. 2) An infection in the lympth gland, and he is taking antibiotics now in case that is what it is. 3) Return of cancer.

They talked to him about a feeding tube, telling him that by now he is losing muscle, since there is nothing else to lose. He is totally against it. They told him no one would even know he had one, and it would be temporary until he could get built back up. He said no, but when we left he asked the doctor's medical assistant about it. But, at home he said absolutely not.

After getting the CAT Scan next week, there is a follow-up appointment on Monday the 20th. In fact, they already scheduled an operating room date in case we need one for a biopsy. I don't know what that date is, yet. For the first couple days after this first appointment, his throat didn't seem to hurt as bad. The doctor used one of those cameras and put it through his nose to look at his throat, but they couldn't get it as far as they would have liked. They could see some things, but knew that the wall was very small.

More updates after we know something.

June 23rd Update

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John's appointment at the U of M is set for July 6th. I don't know how we can wait that long, but we have no choice. Today we had to go around and pick up the films for his CAT scan and for the previous MRI scan 2 years ago. They said it's better to have too much instead of too little. Plus, the local hospital here is going to send the reports from his throat cancer in 1995.

There was a possibility that he could get an appointment tomorrow, Wednesday the 24th, but we haven't heard anthing. That was if another patient had cancelled her appointment, that hadn't been confirmed yet. I don't suppose they'll be calling us tomorrow the day of the appointment. So, we just plain wait! Waiting is hard, and he can't eat much and has a lot of pain.

He had his Interferon Injection on Sunday this week in case they called him with an appointment for the beginning of this week. So, we wait.

CAT Scan Information

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When we first heard about the CAT scan report, John said the doctor told him it didn't show anything and to go see an ENT. An appointment was already set up for that. Wednesday he made that appointment, and it seems there was a lot on the CAT Scan. He is being sent to the University of Michigan for a Consultation to decide if they want to do a biopsy or removeal of suspicious masses. We're waiting for that call from U of M.

In the meantime, yesterday I called his doctor to make him take a look at the CAT scan and see what he missed. Well, he called me back, and said that he personally talked to John and told John that there was something there and they didn't know what it was, and to go and see that ENT because he was a specialist in that area. So, I don't know now. All I know is, he's in pain, and we're waiting.

CAT Scan

John got a CAT scan of his neck today. He took Lexapro before having it. He was very relaxed. When we came home he slept hard for at least two hours. They said it would be 2 to 3 business days before the doctor heard anything. So, we'll take one day at a time until we hear something. He said the pain is bad. I asked him if it was a level 10 in the morning when he got up without having pain medicine all night. He said it was about a six. I know it's more at times.

I'll post something new when we hear.

Spring Time Update

The last few blood tests John has had have been good. The platelets are staying at a reasonable level. I hear people on the MPD website saying that their platelet counts are 700,000 up to a million. I don't know how they can remain that high without complications. When John's were that high, his Hematologist was freaking out. We were too.

On June 1st, John finally gets Medicare. It's been a two year wait to get this coverage after getting on disability. We've been looking for a supplemental plan that pays for what Medicare doesn't, plus Medication. We are waiting for approval. This will be great for him.

Interferon dosage has been the same. It is doing its job. He still has a problem eating and swallowing. The 4th dilation only worked for a short time, if it did at all. John has confidence in it. His weight is still down.

More April Updates

Last Friday morning John had another esophageal dilation near Janet's house. He came through it well. The same place in his throat needed to be stretched. I guess it's the same stricture. He spend the night at Janet's then came home on Saturday evening. He said he just wants to sleep in his own bed.

His blood tests are doing good, and the Interferon dosage is the same. This time when he had in injection Monday night, he was sick most of the night. He's been feeling sickly on and off since then. But, he's fine now, and is actually at an event with Taylor. He says he feels bad until about noon. John is an early riser, and goes to bed fairly early, but as I said, Monday night was bad for him. He's still taking medication for high blood pressure.

So as we continue with the Interferon, the dose has been staying the same for months, and it seems to work for him mostly. The platelets are good, and the other readings from the tests are too. That's a good thing. He's still not eating much, and still has a problem swallowing. I can tell it hurts because he stomps his foot on the floor when trying to swallow. I think it would be easier for him if he would let me put food in a food processor, but he refuses. Therefore, his weight is still low, and his pants seem to be falling off of him! He needs smaller pants now. More updates as needed.

Big Brother Birthday

Happy Birthday, Ron

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April Update

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All of John's blood test results came back good. Platelets were at 435,000, which is close to the high end of normal (450,000) but good for him. The liver and kidney tests were normal. He's back to three week intervals for blood tests again. Interferon dosage remains the same, and he had an injection last night.

He gets out of breath easily, and now has a Handicap Ticket to hang in the car window. It was a little too much for him to walk through the parking lot then walk through the store. This helps, but we've found out that Walmart needs more handicap spots! They were all taken yesterday, but we found a close spot anyway.

John is now on blood pressure medication. Since October his blood pressure has been going up, so the doctor put him on something. I'm going to purchase a blood pressure monitor for home use so we can monitor it.

More updates later.

Have a happy Easter.

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March Continued..

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John had another blood test on Monday. When they called with the results, they said to have another one in two weeks instead of one week like he has been doing for the past three tests. He has a doctor appointment with his oncologist/ hematologist this coming week anyway, so it will be only one week, again, between tests. He doesn't feel good a lot of the time, and his throat hurts on and off. There seems to be a lot of congestion in his chest, and he coughs a lot. Eating isn't much better, but he tries, even though he doesnt' want to eat. He is weak a lot of the time, but I'm sure it's because he doesn't eat enough. According to him... "He says to imagine some food smell or something like that, that makes you sick to your stomach, then try to eat it." That puts it in perspective, and makes it easier to understand why he doesn't want to eat. Nonetheless, he still needs to. He tried one of the instant breakfast drinks the other day and said it was okay, and has had a couple bottles of Ensure this week. At least they have some nutrients, and can take the hungry feeling away.

The dose of Interferon is still low, but seems to be keeping the platelets in check. John's stomach has been nauseated a lot lately, and he's back on using Prilosec because our Prevacid is gone. This week I'll call the doctor to see if we can get some samples. It's been awhile since he's had to take anything like that. Then suddenly, he started needing them again. He has an expired prescription for a Phenagren for nausea, but he said they make him too tired, and he takes one and can sleep for two hours. I'd like to sleep for two hours! Anyway, I'll try to get him to get a new prescription for that so he can have some relief. Yesterday and today seemed better for that.

More updates after the doctor appointment.

March 2009

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John is due for another blood test this Monday. The last two weeks he's been getting it weekly again. There have been some changes so the doctor is keeping a close watch on it. The platelets are stable, but some other counts are high or low. The dose of Interferon is the same. His weight is down. He hardly eats. Yes, he does try most of the time. I can imagine it gets frustrating when you sit in front of a plate of food, knowing it's going to hurt to eat it, or to be afraid you will choke because you can't swallow it. He refuses to let me put meat in a chopper to make it smaller. And he refuses to have a feeding tube, now or later.

At the end of the month he has a doctor appointment. He hasn't been there since December, but that's normal now. Although the December appointment wasn't a scheduled appointment, but he went because of the pain in his throat. His doctor told him that he needed the throat checked before he would know what was going on. But, the scope showed nothing wrong other than narrowing.

There's nothing more to report until after his appointment, or any major changes in his blood test results.

February 2009

John is about the same. Even though he had the fourth esophageal dilation, he is still having trouble swallowing, and now he's having pain again. Of course it hinders what he can eat, but he is trying to eat. He's due for a blood test today, and it's been three weeks instead of two. His doctor thought three weeks would be okay. We're curious to see the results today after so long. He has continued with the Interferon injections, and had one last night. He was doing okay for the most part, other than the usual Interferon side-effects. I'll add the blood test results wheen we get them.

Happy New Year 2009

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Well, here we are into a new year. John's condition is about the same, but one major change has been his throat. He has had severe pain somewhere in his throat. It's not something that can be felt through manipulation, but the pain is definitely there. It's hard to tell if it's in the esophagus or somewhere else. Eating is very difficult, and he's eating a lot of soft food. He does try to eat regular food, but it kills to swallow. He said it feels like something pressing against his esophagus when he swallows. His doctor couldn't find anything, and recommended another scope, so he has an appointment for that on January 9th. This will be his fourth scope, and more than likely another dilation. We're not sure about the dilation, but he definitely needs another one. The 3rd one wasn't as successful as we would have liked. He's not been able to eat normally for quite some time, and he's very thin avergaging around 122- 128 pounds.

His platelets are a little higher than they were a few months ago, (520,000) but still okay enough to continue on 2.4 mL of Interferon. The Interferon still makes him sick, but not as bad, and not as long. Last month he went down to 2.2 mL of it, but then the doctor raised it recently. On occasion he still itches, and uses the UVB Photo Light to stop that, when he needs to. It's not too often. Thank goodness for that light! There is information on the sidebar about this type of light treatment.

We had family time in Chicago at Christmastime, and had a fun tme. New Years Eve was spent at home and we had Taylor and her best friend with us. It was fun to hear the giggles of two 12 year old girls!

Before Christmas, we were hit with 1 1/2 feet of snow! Yes, that's right! It was cold-- below zero with high winds. I had two snow days from school in 1 week! Then, by the end of the week, it rained and melted most of it. While we were gone, winds here at home got up to about 60 mph, and my neighbor's 40 foot pine tree blew over. Do you know what they say about Michigan weather? "If you don't like it, wait 15 minutes and it will change." I've lived here all my life, and it's true. The lakes are fun in the summer, but when you get lake effect weather, you know you're in for something. Along the coast of Lake Michigan, they had a blizzard and told everyone to stay home and don't go out unless you have to. Well, apparently 100 people didn't because there was a 100 car pile-up. Unfortunately, one person died in it. We had terrible roads here, too, and we DID stay home. It putour christmas shopping on hold, but we did manage to finally get it done. Thank Goodness Santa Claus doesn't have a problem with weather!

I'll update next week after John has his procedure. Have a great weekend.

November 15th

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John is back to weekly Interferon injections for now, but still a low dose of 2.4 ml. His last platelet count after twelve days of no Interferon was 490,000. That's over the high end of normal. So, his doctor decided to have him use it last week and this coming week, then have another blood test. His platelet count was holding it's own for awhile, and that's why the doctor had reduced the amount. Looks like we just have to

wait and see what the

next lab result is.

Update

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Last Tuesday John had his blood test, and the platelets dropped from two weeks before. This is better because it was up over 400,000 two weeks ago. This week they were 371,000. In fact, the doctor is so pleased that he cut the dose of Interferon again. Now, he takes 30 mcg which turns out to be 2.4 mL in the syringe. The nurse at the office said the doctor said his platelet count has been stable for so long now, that he's interested in cutting back as much as he can, maybe even stop it. Well, we have mixed feelings on that because to begin with there was a reason they went up so high to begin with. It would be great to get off it though. Hopefully, he would get back to feeling half way normal. His doctor appointment is Monday of this week. He'll have another blood test then, too.

Third Esopageal Dilation

On Tuesday, John had his third esophageal dilation in Chicago. The doctor said he cut through a lot of the scar tissue this time, and when it gets opened like that it usually doesn't grow back. He thinks this will be more successful since he got it opened up more. It's only been about three weeks since the second dilation, so that one didn't get him opened up a lot. He's feeling just okay physically, but the throat part is feeling good, but like a bad sore throat.

On Thursday night I gave him the Interferon shot, so that contributes to him feeling bad today. He still isn't eating much, but hopefully when it gets all healed inside he can. His weight is between 118 and 121. This last blood test showed an increase in his platelets. We're hoping that he can stay on the lower dose of Interferon. His next blood test is Tuesday, so we'll wait on those results. He also sees his doctor this month.

Fall has definitely arrived in West Michigan. The trees are beautiful now, but the colorful leaves will all be gone soon, leading us to winter. Bah humbug...

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There hasn't been much to report which is a good thing. John's platelets have been very stable, and the other counts are doing good. A week and a half ago he went in and had another Esopageal Dilation. He said his throat doesn't feel a whole lot different, and he's talking about going in to have it done again soon. We've heard it takes at least three times, but I suppose it depends on how bad it is. His is very small, and he can't even swallow a half of a small pill. He's still on the reduced dose of Interferon once a week. This seems to be best for him. It doesn't make him as sick as the full dose, and it is keeping things stable. He's just lost so much weight, he's very thin, and can't seem to put any on.

Fifty-Seventh Week

I skipped blogging last week because everything was about the same. John got his injection on Wednesday night so he would be feeling okay for the weekend when Taylor had another horse show.

He had a blood test yesterday. He's been on the lower dose for three weeks this week. His labs and platelets are looking good. The platelets this week was 374,000. The dosage of Peg-Intron is to the 4.4 mark in the syringe instead of the full bottle of Intron. It still makes him sick, but not for as long.

He's having the esopageal dilation for the second time soon. His throat has closed up some since the first one, and it's time again. We've heard that it usually takes three times. His next shot will be this Thursday, September 11th.

Fifty-Five continued

John had a good weekend, feeling mostly okay throughout. On Saturday he didn't do much other than rest on the couch, but he didn't feel too bad. He still complains of having a headache at times. Not sure why that is. Today is the day for his blood test, so we're curious to see how the platelet count is since his lower dose of Peg-Intron. We'll probably have the results before the doctor's office closes. He still wants to take the shot longer than seven days. If this platelet count, and other counts remain unchanged much, then we'll be talking to the doctor about that. We'll see.

Week Fifty-Five

It's hard to believe that it's the fifty-fifth week of reporting about this journey. It really could have started about 12 years ago, but I didn't know John then, so I'm only reporting on what's been happening since he started on Interferon.

Now, with his injection yesterday, it's time to journal this week. He feels bad about an hour after it, then after a couple hours, it feels like he has the flu. He went to bed for a couple hours, and felt a little better when he got up. Toward evening he wasn't real bad, but still, what he calls, half way. He had a terrible time sleeping last night, even with a sleeping pill.

Today he feels better, but I'm sure he's tired, and actually resting now. Since he's on a lower dose of Peg-Intron now, we're wondering if it will affect his levels. He gets a blood test on Monday, so we won't know till then, but he started itching last night and today. He had to do the light treatment for the itching. Thank goodness it helps. Now we're curious to see if his blood levels are different. If so the dosage will probably have to be increased. John really hates getting a shot every week, and is thinking the 10 or 14 day span was better. We'll know more on Monday.

Week Fifty-Four Continued

About an hour after John had the shot, he started feeling sick, like coming down with the flu. He felt sick for about four hours. He went to sleep for awhile, and started feeling better by late evening. Yesterday he didn't feel all that good in the morning, but as the day went on he felt better. So, with the lower dose of Peg-Intron, he wasn't sick as long. He's feeling good today.

Week Fifty-Four

John just had his shot for this week. After having a reduced dose of Peg-Intron Interferon, 80 mcg per 0.5 mL seven days ago. Last week after the shot he was sick for the night and went to bed early, but felt kind of good the next day. After one week on the lower dose, his platelet count is at 434,000, up just a little from two weeks ago. Next week will probably determine whether the lower dose will have an effect on the counts. I'm not sure if it will take longer, or two weeks would be an indication of dropping or rising. I hope they stay about the same because it's frightening to think of them becoming unstable again, like they were last year. More updates as needed.

Taylor was in a horse show this past Sunday. Out of eighteen riders in her class, she took FIRST PLACE!! She did a great job; we were so proud of her. Then, at the end of all the shows, they judge all the classes as a whole. I'm talking 53 classes for this. She came in third!! They had so many, and the decision was so hard, that they ended up splitting the groups, so they had two 1st, two 2nds, two 3rds, etc in each group. So, even if they hadn't done that, and just kept the one group, she would have come in 5th! WOW! Enjoy your day!

Fifty-Three Continued

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We went to the doctor appointment on Monday. John lost a pound since he was there last, which was three months ago. He doesn't eat much at all. We talked about how sick he got on the 14 day shot schedule, so now it's reduced to every seven days, but it's a lower dose. It's 80 instead of 150. I'll have the correct measurement when I see the box, which will be delivered on Monday. After telling the doctor about how sick, John decided he wanted to stay on the 14 or 10 day routine. But, the doctor didn't want him to be sick all the time, so he went ahead and changed it to the seven day routine. John hates the idea of a shot every week since he can't stand needles. The doctor's concern is keeping the platelets stable. He doesn't want them to get out of control again, since it took so long to get stabilized. He will get a blood test every two weeks as usual. The first couple should tell us if the platelets are getting out of whack again. Prayers would be nice!

Have a great weekend.

Fifty Three

I gave John his shot late Thursday Afternoon. He went to bed before eight that evening. It hit him hard again. He had dizziness, and the usual flu symptoms. Before the shot he had a headache, so we don't know if it's due to waiting so long in between. Tomorrow he has a doctor appointment, so we'll discuss the 14 day plan.

His platelets are staying within a good range, so the Interferon is working in that aspect. He's still thin, and can't eat much, but that's related to his throat problems, although the Interferon does make him nauseated at times. It must be that, too. He has pills to take for nausea that help, but they make him sleepy. He's been pretty good since Friday though, and we're glad about that.

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Week Fifty-Two Update

It's been over a week since John's shot, and he's still on the 14 day schedule. He's not doing too bad, but about the 8th day he was dizzy. Maybe he gets dizzy because he doesn't eat much. He was feeling bad that day, too, and stayed on the couch most of the day. His next doctor appointment is on July 28th. We're going to talk about the 14 day schedule. More updates will follow as needed.

Week Fifty-Two

Well, it's been fifty-two shots, and June was a year. John's getting his injection every 14 days now instead of ten. He started out once a week, then at one time he had two a week, but smaller doses. Mainly it's been every seven days, then last month went to every ten days, but now it's 14. Fourteen didn't seem to work very well for him. He got really sick this time. He was down for almost two full days. During the day he actually went to bed to take a long nap, and he never does that. It hit him with a fever, chills, bone aches, nausea, all the typical flu symptoms. Then, add the Polycythemia Vera, Myelofibrosis, and Essential Thrombocythemia to it, and you can imagine how he felt. The platelets stayed in a good range though, so how can we fight using this? This week, ten days after the last blood test, his platelet count was 426,000, normal but at the high end of normal. By the third day he was feeling better, but not great yet. Today is six days after the shot, and he's feeling fine. He didn't mention to the doctor how hard the 14 days was, and the next 14 days will be a doctor appointment at the end of this month. I guess he's willing to go through that sickness again. But, he said, "Oh, I have a cold, that's why I felt so bad." His so called cold lasted 2 days. I don't know why he didn't mention how bad he felt to the doctor. At least he's feeling better now, and the sickness did pass. Feeling good and having the platelets and other counts stay stable, is all we ask for right now.

Fifty-One Still Continued

Tuesday was blood test day, and John's platelet count is 330,000 this time, and that's for three weeks. He has to go two weeks next time. The Peg-Intron Interferon will be every 14 days now instead of ten days. We'll see what happens with two weeks in between. I guess it's because his platelets dropped. We're thinking of what the doctor said at his last visit, which was if the ten days didn't do well, he could do seven days, but cut the dose back. He's been getting headaches, and we wondered if it was because of the space between shots. We'll see how much difference, if any, it makes.

More updates as needed.

Fifty-One Continued

The Interferson seemed to hit John hard this time. He had a real bad headache last night, and his body ached so. He felt very miserable beginning in early evening. Sleeping wasn't too bad, but he woke at 5:00 a.m feeling sick. Today, he's achy, and said he feels worse than he has in awhile.

Interferon seems so unpredictable as I've said before. He usually gets the flu symptoms, but sometimes they are mild, sometimes not.Unfortunately, this was one of the 'not' times. He's still determined to go out and cut the grass. The drive to keep going and doing things is probably a good thing for him. He doesn't have to sit and think about how he feels. It's sometimes hard to understand and tolerate the moods that go with this. If anyone is experiencing this, you're not alone.

The hot air balloons are coming to town soon...

Fifty One Weeks

Last night was Interferon Injection night. John seemed okay last night, but this morning when he got up he was trying to figure out why he felt so bad. Then he remembered he had the shot last night. He was mainly achy. We went horseback riding with Taylor, and he seemed okay, and still seems pretty good for just getting a shot last night. It will probably hit him later, since it usually does. His throat is very sore, and it is hard to swallow. He needs another dilation again, already, it seems. He's been getting headaches for a few weeks now.

It's supposed to be 90 degrees here today. I think our hottest day so far this summer.

Taylor usually jumps over 2 ft jumps, but the ring was wet at the other end, and they were using just half of it, so there wasn't enough room to do the big jumps.

Fifty Weeks

It's been about eight days since John has his 50th shot of Interferon. His counts have been stable for quite awhile now. He doesn't feel good for a lof of the time, but he gets by. It's always worse the night of the shot and a couple days afterward. He's been tired lately, resting some when he can. He's due to have the next one on Thursday. Blood tests were changed to every three weeks instead of every two weeks.

This was a busy weekend with the family. We went to Chicago for a high school graduation. Congratulations Elizabeth!! We made a weekend out of it, leaving Friday and we came home Sunday. Most of the family was there. We saw all three grandchildren! The weather was great, but we had a rain storm all the way 'till we reached Michigan. John felt pretty good all weekend. It was nice to see everyone!

Some of the clouds we saw coming home.

These are very strange looking.

Continue Week Forty-Nine

Sunday and Monday John said he didn't feel good. Sunday he was on the couch all day, and into the evening. He felt better by evening. He didn't have much of an appetite,and just felt blah, like he was sick. The rest of the week didn't seem bad.