higher lows and highs

Well we seem to be rounding the final curve in all this.  We spent last week in Taos working and getting some rest from everything.  Don was able to get more quiet naps in the afternoon and we were also able to get out a bit as well.  But we kept things low key.  I think we are seeing the results of that this week.  Don has increased energy, at least when he needs it.

So the next step is to get back into regular food - I guess dispite the burning and bad taste.  Doesn't sound so appealing. But it is improving.  Pretty soon he'll be back on the spagetti and meatballs....

First dr followup appointment

We had our first dr appt since all the procedures ended and Don passed with flying colors.  The dr said everything looks great and he even graduated him from once a month to every two months!  His job now is to move off the feeding tube and start eating.  The dr said it is like having a sunburn in his throat and tha's why its sore.  So we are really excited that it is going so well.  Don says his goal is to be able to eat my spagetti and meatballs.  I'm ready to cook whenever he is ready to eat!

great weekend

this past weekend was really a good one for Don.  He had much more energy and was feeling pretty good.  He needed less napping than usual. He was really excited about feeling good.  One thing about being sick is that when you start to feel better you really appreciate it.  We had Easter dinner out with some of our friends (Chinese buffet if you can believe it!) and we really enjoyed ourselves.  I can see that when he is with people he perks up instead of hiding out in the house feeling lousey.

Today he's moving a little more slowly but still in pretty good shape.  I imagine that things will still be up and down for awhile, but its good to see him getting optimistic about it all.  I guess it's pretty hard to think positively when you are feeling so sick.  so we are on the road to recovery and a little bit farther down that road.

Getting better every day (isn't that a song by the Beatles?)

Well Don toughed it out through the weekend and beginning of the week and we got home from the conference on Wednesday night.  He was exhausted.  and he got in trouble with his mother for going.  No matter how old you are, your mother always tells you when you are doing the wrong thing.  You always get caught.

Meanwhile he is resting up these last couple of days.  He did great at the trade show - he was speaking on a panel and you would never have known he had been sick.  One of our clients mentioned to him that he had lost weight and looked great.  That was good for him to hear.  So much better than saying he looked like he lost weight, has he been sick.  So it validated what the drs and I have been telling him that he doesn't look sick at all.  And he needed to lose the weight.

We are now on the way to get him back to eating regular food.  Not as easy as one would think.  Nothing seems to appeal to him - not the foodie that he was a few months ago.  But that will return as will his normal taste buds.

We're heading to Taos soon for a change of pace and scene.  I think it will be good for Don to get away.  Its so relaxing for us and we really enjoy it.  I'll post some photos so you all can see how good he is looking.  Maybe we'll get him some cowboy boots.

If you haven't seen our vacation rental home in Taos, I've updated the website.  Take a look.  It's been rented so much lately for short time vacationers that we have hardly been able to get up there ourselves.  But it is supporting itself which is more than I can say for our dogs and cat...

Ups and downs

Well, it's been awhile since I have written but I thought an update was in order.  The radiation dr told us that the two weeks after treatments were not easy and he was right.  It was a real up and down experience for the full two weeks.

Now the lows aren't quite as low so there is improvement for sure.  But it's still not easy.  Don is tired alot of the time but the naps really help out.  He is still having headaches but sometimes they are not as bad now.  sometimes he still feels like crap.  (his term)

Yesterday morning was Don's first business trip since December.  He spoke at a lunch meeting in Phoenix and it went really well.  So that will make him feel like he is getting back in the groove a bit.  Monday we have a conference and trade show and he is speaking in a session on Monday.  The rest of the time he can rest up.

We're finally getting a chance to go up to Taos (we hope) in April.  I'm looking forward to a break and change of scene.  It will do Don good, I think.  And he can take some of that time to do some writing which will be good for him as well.

I'll keep the blog going for a bit because it's not a done deal yet.  Thanks everyone for sticking with us!

on the mend

This morning, the day after the emergency room visit, Don is much better.  Yesterday when I got home from work he was still in pretty bad shape but the effects of the hydration kicked in and there is a definite difference.  so I guess that is what it was.  That's an easy solution.

Today he had his last radiation and they had a little celebration with a certificate and bell ringing ceremony.  Everyone in the waiting room clapped.  ( see photos below) So no more getting up and having to go to drs first thing like we've been doing for the radiation every day.  they said he will be feeling bad for a couple of weeks yet but he is planning on coming in to work starting on Monday and taking little naps here when needed.  So that sounds like a plan.  we'll see how it goes.

Stefan is coming down from Seattle this weekend arriving on Friday afternoon and leaving mid day on Sunday.  That will be a nice break for Don and they always have a good time together so we are looking forward to that.  Don won't be up to speed yet - I'm sure it will take awhile - but we don't need to do a lot with Stefan.  Just having him around will be good.

Dizzy Don

this morning when we went to radiation Don wasn't feeling well.  he was dizzy and has been for the last few days, since the last chemo.  they checked his vitals and his heart rate was very high and it was determined that he is dehydrated.  Its not surprising because he has slept so much that he hasn't been able to watch his fluid intake so well.  So they sent us to the emergency room and hooked him up to an IV to give him fluids.  They are doing tests to make sure it isn't anything else but everyone is sure that it is just simply lack of fluids.

This same thing happened after the first chemo and we probably should have recognized the symptoms but Don always says he is drinking enough fluids.  Unfortunately Don's definition of enough fluids is not the same as the dr's.

I'll keep everyone posted and probably update this tonight.

What he wouldn't give for a home cooked meal

It's interesting (in a kind of strange way) that each of the chemos have had different results with regard to side effects.  this last one seems to have been worse than the last one.  Maybe that is really the cumulative effect on all this.  He is just exhausted and dizzy and not a happy camper.  The more he is forced to do the tube feedings, the more he sends me emails with links to food, restaurants, and pictures of pasta.  That's our boy.

The tube feedings are necessary because the food tastes so bad to him that he can't eat.  They put the tube in because they said he wasn't going to be able to swallow.  but that hasn't happened.  it's just the taste of the food.  It makes me realize how much of our social life is centered around food - either the dinner parties we are always having or going out with friends.

Gary, Beth and the Brumleys are coming over for dinner tonight.  They are bringing it (pizza and salad) so I don't have to cook and Don doesn't have to smell the food.  I could get used to this part...  Actually I do miss the cooking and Don's appreciation for it.  But that will be back soon.

One good thing coming out of this is that I'm losing the weight also.  I am eating the way I do when Don was traveling so much.  He thinks I'm not eating at all because the salad I have for lunch or smoothie substitute for a meal doesn't look like food to him.  And no wine with it?  He can hardly believe it.

cumulative effects

today is a tough one for Don.  The radiation oncologyst told us on Tuesday that he might feel worse at the end of the week and into next week.  So here it is.

There are so many medications on the table at home it looks like a drug store.  We can hardly keep them all straight.  But the drs are watching out for him and giving him things to make him comfortable.  the medication seems to be disagreeing with the liquid food they are giving him for the PEG in his stomach.

Again the drs are amazed that he is doing so well and looking good.  That makes him feel better for a moment but then back to being sick again.  I guess that's what happens when they pour poison into your veins.  Most likely the new medication will settle his stomach and he can sleep through the weekend and feel better on Monday.

It seems like just the other day we started all this.  I know it feels like forever for Don but I am just getting a handle on the whole thing and the treatments are almost over.  The only ones that are happy about all this are the dogs.  They are thrilled to have Don home with them all day.  See how excited they are??

the birthday boy

Yesterday was Don's birthday and the last chemo treatment.  The nurses at the radiation place were all ready for him with a card and they sang happy birthday to him.  The nurses also were all ready with a card and they sang to him with tamborines and one of the nurses did the Marilyn Monroe edition.  Very funny.  Don had a good time with it.

Despite the festivities he went through chemo yesterday and seems a bit more coherent this morning than he did that first time.  But the exhaustion of it all is catching up with him big time.  They are all telling him that sleep is the best thing so his energy can be focused on healing.  My guess is he will sleep for most of the week which is good.

So that milestone is over except for this week and probably next's discomfort.  We see the radiation doctor on Thursday and that might be the last time we see him also.  We saw the chemo oncologist on Monday and that is the last time we will see her also.  So the field is narrowing down quickly.

The symptoms are getting somewhat worse from the cumulative affect of the medications.  He is starting to have trouble swallowing and his throat is sore.   and I imagine that will continue for a bit.  I think everything keeps working for a few weeks after treatment, particularly the radiation.  So we are in for more discomfort before this is over, I think.

beginning of the end

We went to see the dr that is going to be following through with Don after the treatments are done.  They keep watch for 5 years.  He was very upbeat and said things were going great with the treatments.  He said that the food taste would get worse before it gets better.  He also said that it's okay to lose weight to get down to the weight that he wants to be and then maintain that.  That's pretty much where Don is with his weight now so that's good.  The trick is not to gain when he gets back on real food.  But we'll cross that bridge when we come to it.  He was full of lots of info.  This dr only treats patients with head and neck cancer.  Who would have know it was a specialty.

So I think Don is feeling better about things.  That's good because Tuesday and the rest of the week he will need things to feel good about.  Monday night we are having girls night at our house to watch Argos and eat chinese food.  We figure we'll cheer him up so he's not dwelling on the next day.  It will be fun between the girls, the food, the dogs (and cat) and the movie, Don won't be able to think, much less dwell on anything.

the week before the next chemo is best

I just have to say that the week before chemo I get the husband I know back.  This morning we were lying in bed laughing about the dogs in the bed with us.  It's so good to hear him laugh again.  He goes back to his teasing and having fun.  It should be a nice weekend.  Next Tuesday we start the cycle again but for the last time!  Stefan is smart - he comes when it's all done!  But that will be good because they will be able to enjoy each other while Don continues to recouperate.  We plan a trip to Taos shortly after that to just get away, break the radiation routine, and get back to life as we knew it.

Our Taos home is prefect for getting away and we love it up there.  something to look forward to is always good to keep moving forward.  We haven't been up there since the beginning of December.

Better this time

Last Tuesday Don had his second chemo and I waited to see the effect it would take before I posted this.  I'm glad to say that this one wasn't as hard on him as the last one.  He is sleepy and has an upset stomach that he is fighting with medication and sheer will, but other than that he is in pretty good shape.  Not lying in bed moaning like last time.  It was quite a picture with him lying in bed and the dogs trying to take care of him and see what was wrong.  Very sweet.  Actually, I think Frieda slept through most of it last time (old and blind) but she was right there on the bed with him keeping him warm.

We saw the radiation dr today and he is pleased with the way things are going.  They keep wanting to give him pain medication but he isn't in any pain.  and he gained back a couple of pounds which is good so we didn't get in trouble over that one again.  The things that they said he would most likely get (very sore throat so he couldn't swallow, sores inside the mouth, sunburnt like skin on his neck) haven't really happened at all.  The radiation technology women said he is really doing well with the treatments.

So we are about half way through.  Things are getting a bit easier as we adjust to a new routine.  I think that by the weekend Don will be feeling well enough to drive himself around and get moving again a bit.  Next week should be much better for him that the second week after chemo last time.

P.S.  no wonder everyone was complaining - this one never posted to the blog.  It was written I believe on February 7th.  so it's a bit out of order.

All the ups and downs

Well, its been almost two weeks since the last chemo.  It was a bit different this time.  Things are tasting so bad for Don that he really hates to eat anything so he is surviving mostly on the liquid diet that we are supplied for exactly this reason.  Not an easy task for the fun foody guy who loves a good meal and a good glass of wine.  When this all started he asked if he could still drink wine during it all and they said he could eat or drink anything he wanted but he wasn't going to want any of it.  Boy was that the truth.  So no great food, none of the cooking and entertaining we usually do, no dinners out.  We are both losing weight.  Only Don's not supposed to.

Ironically, Don is looking pretty good.  A few pounds lighter makes and improvement and if he wasn't so exhausted all the time and feeling so lousy it would be great.  No pain at all though - the drs keep asking him what he takes for pain and does he want something for it but he keeps telling them there isn't any pain.  So that's good.  Pain on top of feeling this lousey would be pretty bad.

Yesterday we checked out the new Trader Joe's nearby and by the time we left he was so disgusted with all the great things he couldn't eat that he said not to let him go to the grocery store again.  I was pretty surprised when he wanted to go this time, actually.  It really gets him down to not be able to enjoy the things we have fun at - our dinner parties and time with our friends.  So much of what we do with everyone revolves around our friends and great food.  But I keep reminding him that it will all be back soon.

He has been going throught the radiation pretty well.  He is mourning the slow loss of his mustache and beard and some of the hair on the back of his neck but other than that it's going well.  The drs are happy with the results they are seeing.  They can just look down his throat and tell it's doing well.  The radiation dr asked me if I wanted to look, but I passed on that one.

The whole radiation process is pretty amazing with all the machines and equipment.  His guy friends keep volunteering to drive him to his radiation treatments because the nurses let him go in and watch Don get bolted down and then they let them go in the room with all the controls and watch the whole process.  It is pretty amazing if you aren't the one on the table with the mask on.

I do need to say that our friends have been just great.  They are always checking on him and complain when I don't do this blog often enough.  We have made a couple of dates to get together with people but Don is usually so exhausted he cant hang around for long.  A short outing just exhausts him.

The drs keep telling him to sleep and that it is the best thing for healing and he has taken them at their word. He slept practically all day yesterday and we have a movie planned for the afternoon today and I'm half expecting him to bail out and just want to stay home and sleep.  That's okay too.  I'm letting him completely decide what he wants to do because I think he needs to listen to his body and let it tell him what's best.  His energy needs to be used to mend after the radiation and poisoning that the chemo does.

Speaking of chemo, his next one is a week from this tuesday (on his birthday, the 26th) and then he is done with it!  Radiation ends a week later during the first week of March.  We are almost there!  Unfortunately it's not easy for him to see the light at the end of the tunnel right now.  He still has to go through the awful weeks after chemo when he feels so bad.  It really takes him two weeks to recuperated from it.  I think today is the first day since the last chemo that he was laughing at the Sunday comics.  It is good to hear him laugh.

In a couple of weeks Stefan (Don's son) will be down from Seattle for the weekend to visit and that always cheers Don up.  We have so much fun with him and his sweet little family.  Stefan is just coming himself this time because we haven't told Sammy (THE grandchild) that his Grandpa is sick.  We talk to them on Skype and that's always fun.  No reason to upset Sammy since it will all be over soon.  He is so crazy about his Grandpa.

So there we are.  Getting closer to having it be over.  This should be a better week.  the one just before the next chemo is always better.  as Nadine, a friend of ours who has been through it all said,  the day you feel the best is the day before your next chemo.  She sure knew what she was talking about there.

almost two down and one to go

So Don is in his second chemo treatment today.  I went by at lunch and he was a happy camper because his arm was bothering him so they gave him vicodin.  All smiles and kind of goofy.  Probably the best way to be in that room with all those other bald people.  It makes me realize how lucky we are that we are having to go through this without the negative prognosis some of these other people have.  There are plenty of way worse stories in that room.  Most likely Don won't be thinking that when he is sick as a dog tomorrow.

They weighed him in at the dr office yesterday and he has lost more weight so we got in trouble.  he has to do more of the hospital drinks and still try to eat.  He can eat just fine, but he says it all tastes terrible.  So that isn't much fun, especially for such a foodie as Don is.  and he says wine tastes terrible to so no more going into the wine cabinet for those expensive bottles of wine (anything over $20) until he can taste them again.  The think about him losing weight is that he really needed to and he looks great.  Today I brought him a Wendy's burger, fries and a milk shake.  I can't tell you the last time I could eat like that!!

So here he is spending the day in the hospital barco lounger.  And here are his green Ikea shoes that he always wears to these things.

quiet week before next week's chemo

Its been a pretty quiet week.  Don has pretty much recuperated from the chemo and the radiation is just making him sleepy.  He's been able to drive himself around and things are fairly normal considering.  He spent too much time running around last weekend because it was the first weekend that he has felt reasonably well, but he did too much (bad patient won't listen) and by the end of the weekend he was beat again.  But I can't say I blame him.  He's feeling pretty unproductive.

So next Tuesday is chemo again and we start the whole process over.  He will be in pretty bad shape for all of next week and probably into the weekend.  then things will improve until the next (and Last!) chemo at the end of February.  at least we are getting through it.

Also, the radiation dr says that he cancer is responding well.  the slight swelling at the side of Don's neck is gone and some of the other things that were symptoms that we didn't recognize (tingling of his hand and foot on one side) are gone also.  Throat is getting a little sore though and everything is tasting metallic to him.  So he isn't wanting to eat much.  Today is the day that they weigh him at radiation and he has lost additional weight so they are scolding him about not eating enough.  So he will supplement with ensure and some other things.  It's not that he couldn't still use a couple of additional pounds off, but they don't want it to happen while he is being treated.

I guess he should have more ice cream and milkshakes.  Its a shame what you have to go through to be able to justify having a milkshake!

answers to questions

This morning when Don went to radiation he told the doctor about his experience with the fall the other night.  The doctor said that it was dehydration and was a common issue because most people don't drink enough fluid and so they experience something like that when a time comes that they need to pay attention to it. That was a relief to hear.  You just never know what these things mean when you haven't experienced them before.

Also the doctor said that the cancer was already responding to the treatment so that is excellent as well. Nice to get some good news for a change.

Don seems to be feeling better today as well.  He is in the office and I could hear him laughing with a client.  It was nice to hear that big laugh he has.  He is still tired from the radiation but not sick from the chemo.  He will have 2 weeks to rest up before the chemo knocks him down again.

it's quite a roller coaster ride.  And I don't much like roller coasters myself.  I discovered that at an inopportune time - Neil, a friend of mine, talked me into going on the roller coaster in Las Vegas at the New York casino.  It's the one at the top of the roof.  Well I figured out that I hated roller coasters right in the middle if the first full upside down loop.  Unfortunately, there were a couple more loops to go before I could get off.  I see some similarities.

every day a new event

Yesterday Don was somewhat back up and running and we expected today to be an even better one.  However he got up in the middle of the night to go to the bathroom and he just found himself whirling out of control, ending up running head long into the chest of drawers in the dressing room and falling down.  It was quite a crash.  So we got him up and back to bed.  The dizzyness seems to always be with him.

The emotions surrounding this whole experience run pretty high and it's hard to not get into it with him when he is angry at his situation and striking out.  when these strange unexpected things happen they are frightening as well.  everyone seems to have a different experience with all these drugs and machines and i guess we are having our different experience over the next 6 weeks or so.

The weekend

Yesterday started off pretty well but by mid day Don was having cramping in his abdomen.  We thought it was a bathroom issue (or lack of) but we decided to call the on duty nurse at kaiser.  They said it wasn't an emergency but we should go to the emergency room in case they wanted to do any testing or anything.  So off we went.

They are pretty attentive when you get to emergency and you say cancer and chemo.  They jump right up and get you inside away from the sick people.  Especially with the flu going around. So anyway the upshot was they took blood, did an xray and ct scan and said that he wasn't stopped up but had a mild lower intestine inflammation.  Not too sure how that happens but it has to do with bacteria.  anyway they sent us home with two types of antibiotics.  We ended up being there for 5 hours.  I think it's a good thing we went because we don't want any infections in the next 6 weeks.

Today I think he is still suffering from the effects of the chemo not to mention the new medication.  He's really tired and I've had to pry him out of prone position just to get the blood moving a bit.  He's hoping to be improved by tomorrow enough to at least put in a part day at the office.  Lucky it's nice and close so we don't have to do a commute as well.

Tomorrow its back to the routine, radiation every morning at 9:15 for about 10 minutes.  At least no chemo for a few weeks.  that should let him catch his breath a bit before the next bout.

chemo recuperation

The chemo laid out Don pretty hard yesterday.  I guess running poison through your system doesn't feel too good.  He's a bit better today but still not his usual springy self.  They weighed him today at radiation and he has actually gained two pounds. They are watching to make sure he doesn't lose weight.

Okay, lets see what they recommend for his diet - the instructions say ice cream, fruit pies, pudding, milk shakes, fruit smoothies, anything with lots of calories and put whipped cream on it to top it off.  He doesn't see it right now, but it sounds like that is some kind of upside.  however, no alcohol means that he is cut off from wine and cosmos.  Uh oh.  I wondered why some of our friends have stopped coming around...

So far the radiation isn't showing up on his skin as red and irritated.  But we are going to get the creams they recommended anyway - we have several weeks to go yet.

So that's pretty much the scoop for now.  chemo won't happen again for several weeks so that's good.  And then only one last time at the end - on his birthday.

Well, today is Tuesday and it was our first day with this process. 7am was the radiation. They had built him a "mask" to make sure the radiation was just in the right pinpoint spot. So every day when he goes there they put this mask on him and bolt him to the table. I have to say, being somewhat claustrophobic, it doesn't look like something I would be able to do. At least not without excellent drugs! But our champ did great. the photo below shows Don laying down with the mask over his face and the radiation laser at x marks the spot. notice the beam coming from the wall behind him. there is one on each side. Doesnt look like much fun, does it?

Then we went to Zion for the chemo treatment. So that means that Don spent the day in a barcolounger watching TV, reading, and whatever else (napping I suspect). He had everything but the bon bons. All kidding aside, it was a nice place and the nurses were great. It seems to be a comfortable atmosphere. Today there was someone there who had their last chemo treatment and they had him ring a gong and everyone clapped. That was pretty great. Needless to say, he had a big grin when he left.

Once I got Don settled into the barcolounger with all his stuff around where he could reach it, I left and went back to work. then went back to bring him lunch - home made pasta with bolognese sauce. (to go with the bon bons). After lunch our friend Mike Brumley came to visit Don and I went back to work. Now he's home and going to take a nap. It was a tough day but now we are starting the process - the sooner it starts the sooner it will be over!

catching everyone up

 This blog is being written at our friends' request so they can keep track of Don's progress without having to call all the time to check in.  This will save me lots of time fielding calls from all of Don's fans, as they reminded me.  It certainly makes it easier not to repeat the same stories over again.  So here we go.

For those of you who are just coming into the story, I'll give some background.  Just before Christmas Don was diagnosed with oropharyngeal cancer.  I'll give you the link for the medical info:  link to oropharyngeal cancer info.  First thing to know - it is totally treatable.  That is all I was interested in hearing at the beginning.  

As some of you have experienced, when you get the phone call that the Dr says "cancer" you don't hear anything else he says.  So you need to call back to find out what the deal is.  The radiation oncologyst said that it is totally curable but the treatment is terrible.  So that is what we have to look forward to.  

There were some preliminary steps to this before the radiation and chemo start.  First there was a feeding tube that had to be inserted in Don's stomach in case the treatment made him unable to swallow.  The Dr said that it isn't always necessary but you don't want to be doing it in the middle of treatment if his throat gets too sore to swallow.  Not pleasant to be looking a bit like a pull toy that goes "ouch" when you pull at the tube.  

Next was some dental surgery to remove teeth that would be affected by the radiation.  that was a tough one for Don but you can't tell the difference when you look at him, so that's good.  I think he thought he was going to be taking on the hillbilly look, but no.  So besides the obvious discomfort of having that done, so far so good.  But with sore gums he is getting pretty sick of soup.

The latest insult was that they had to design a "mask" for the radiation, to keep it pinpointed in the same places, which is both sides of Don's neck.  He said that it was the worst experience because they clamp this thing to your head and neck to mold it into place.  He said it was really claustrophobic.  They would have had to invent something new for me if I had to do it because I would have completely freaked out.  

So this coming week we are on to the real stuff - chemo and radiation on Tuesday.  The chemo treatment will happen three times - once at the beginning, once in the middle and again at the end.  the radiation process is supposed to run about 6 weeks and Don has to go in every day for about 10 minutes to have it done.  5 days a week.  The chemo process is 7 hours each time and they say to bring things to do and eat because you are just sitting in the chair with the TV on, and you know what daytime TV can be like!  Our friends are volunteering to go entertain during that period.  Each has their own idea of what is entertaining - Mike Brumley had volunteered to go in this first time and read Don the tax codes....

So that is what is happening so far.  We have some up days and some down days when Don sees this all stretching out before him.  But I guess you can't get it overwith until you start it.  I know, easy for me to say...