After Ken’s appt. we were told he had 2 nodules in his lungs.  At the time of the last CT/MRI he had done he had one.  We did recieve the official report from the CT Scan just yesterday and it says that he has a 2mm nodule and a 1mm nodule, both in the lower lobe of his left lung.  We won’t know what this is, or means until they do another CT/MRI in 6 months.

We still don’t have the official report from the MRI.  I’m not sure what the problem is and will be calling the office (again) Tuesday morning.

We are not going to panic.  It isn’t 100% that this is the cancer spread to his lungs.  We just have to wait and see.  In the meantime we will just pray. We are going to focus on the kids, our family, and just LIVING. We feel like we havne’t lived this past year, just been holding our breath day to day, trying to get through this HELL we’ve been living. We are going to use this time to enjoy our life together.

Ken is actually doing pretty well.  He is starting a new job this week.  He was supposed to start the past Tuesday but he woke up with a fever and couldn’t move his neck.  Scared me to death.  Turns out he had Mono!  I probably have it too.  I had swollen glands but they didn’t do a blood test on me, saying “If he has it, you have it”.  I told Ken we are way to old to have the “Kissing Disease”!  He had a rough couple of days but is now able to swallow like he was before (nothing solid, just some liquids).  He is still not able to swallow more than twice in a row.  He’s working on that.  But for now he’s still dependent on the feeding tube.

I have been having some health issues of my own.  Please keep me in your prayers also.

Wendy

Please pray that the RT worked as we’ve already been told that if it didn’t there are no other treatment options at this time.  A lot is riding on tomorrow.

Please also pray we have a safe trip with no travel complications as our car has been acting up (again, what’s new?!?).  Ken thinks he has it fixed though so I’m sure we’ll be fine. 

The good news is Ken has been doing very well.  He has really been making great strides the past few weeks and says that other than not being able to eat food he’s actually starting to feel normal.  I’m very glad to report this.  He has been looking for a job also so hopefully will work out there too.  He did find one job but on the 4th day they let him go telling him he wasn’t pulling his weight.  Ken was really discouraged but intends to keep looking for something he is physically able to do.  He is soooooooooooooo ready to be out of the house and be a working man again. 

I will post tomorrow when we get home and let everyone know what the Dr/tests say.

Love,

Wendy

The kids are doing really well.  We had our end of year evaluations last week and everyone is doing great.  In the past month or so everyone has been to the dentist and so far Tommy was the first to have his physical.  He got 4 shots and was NOT a happy guy.  After the 2nd one he kept telling the nurse “Can’t you just poke a boy once?!?”  He survived and I’m sure the other kids will survive too…they are all scheduled for later this month. 

We started a garden not knowing what we were doing.  Well, we forgot (didn’t know!) the IMPORTANT step of killing the grass before we planted (we thought tilling would do it) so now we have a nice healthy lawn with a bunch of vegetables growing in it.  Ken and Caitlynn go out daily and try to weed and check on how the veggies are growing.  We got our first Zucchini Sunday and everyone was excited because at our house Zucchini means Chocolate Zucchini Bread!  However the Zucchini is too small for that so we will have to wait a bit longer to get another one to go with it.

The Prostodontist is still working on his prosthesis.  He has had the top home with him for a couple of weeks now and we go back at least once a week to adjustments.  Working on his speech/swallowing is harder than we all thought.  But he is doing well.  Once the top is working correctly they will start on the bottom and then he can work on eating.  Right now he is having problems with repettitive swallowing but we are hoping that will be resolved soon.  Basically he has to train himself to swallow again.  He will never produce saliva the correct way because of the RT so this will be a lifetime struggle.  Hopefully we can control it enough so that he won’t be dependent on the feeding tube for the rest of his life. 

Ken is really doing much better.  In the past 3 weeks or so I can see a lot of improvement.  He doesn’t sleep as much anymore and goes out and putters in the yard and garden often.  We go September 16 for an MRI, CT Scan and to meet with his surgeon for a reading of the results to see if the RT worked.  We both are very nervous about this.  We are both anxious and apprehensive about this appointment as we do know that the surgery was not successful and they “closed him up with significant disease remaining”.  So please, PRAY PRAY PRAY for a good outcome for him.  I know that with God all things are possible so it’s easy for me to have faith and remain positive.  Ken not so much.  As the time gets closer keeps telling me things to “prepare” me for “life without him”.  So some positive thoughts for him would be greatly appreciated also.  He has always been a glass half empty kinda guy and this whole Cancer thing has knocked him for a loop as it would with anyone. 

Thanx everyone for all your continued thoughts and prayers.

Wendy

The kids are doing well.  In July we have 2 birthdays, Allison and Tommy.  Kenzie and Kens’ are in June.  We refer to the beginning of summer as “birthday season”.

Ken is doing as well as can be expected.  Really there has been no change.  He still isn’t able to eat by mouth. He is still very tired and is easily exhausted.  He sleeps alot but the Dr. assures us that this is what his body needs right now.   We are going to the Prostodontist in Cleveland weekly to get the prosthesis’ for his mouth made.  This is a 6-12 week process and we are on week 4.  We are both hoping it won’t take 12 weeks….we are so tired of driving up there. 

Yesterday our very good friends decided to get married.  We hosted a wedding cookout for them.  Ken BBQ’d as that is his specialty.  Everyone had a nice relaxing day which is what they wanted for their wedding.

At the end of August we find out if the RT worked.  Please pray hard everyone.  An awful lot is depending on these tests results so please pray for a good outcome.  We are nervous and anxious.  Through this whole ordeal the waiting has been one of the worst parts. 

Thanks,

Wendy

Ken is doing a bit better.  He doesn’t throw up as often as he used to.  He still is very tired.  RT takes a lot out of a person.  He is not gaining any weight but he’s not losing any either, so we are thankful.  He is still unable to take in diet by mouth.  He can only swallow a few sips of liquids at a time.  He is still having great difficulties with Mucousitis, which is preventing him from swallowing more than a few sips at a time.  He is getting ready to start the process of getting the permanent prosthesis’ for his mouth.  This is an 8-12 week process.  Everything just takes soooooooooooooo long.  We are soooooooooooooo ready for him to be back to himself, or as close as we can get him to it.  He is depressed because he thought (I did too) that he’d be further along in his recovery by now.  I’m not sure what is harder on him, the Cancer, or the not being able to do the things he took for granted before…like working, running with the kids….arguing with me

Ken has wanted to go back to work for months now.  Who am I kidding, he never wanted to stop working.  One of his Dr’s told him at his last appt he could start looking to go back soon.  His other Dr. at the next appt. says he should wait a while.  I agree with the 2nd Dr., he is just wiped out.  He sleeps all of the time. (I thought it might be depression but the Dr. said that might be some, but mostly his body is just depleted)  When he does do something, like go with us somewhere, or work on the car, he is so exhausted afterwards he basically passes out.  Right now we are just focusing on getting nutrition in him and letting him rest and build back up his stamina and health.  We are hoping he can start eating some real food soon since he will be getting his prosthesis’, and will be able to chew, which makes you produce saliva, which will help him swallow. 

Since he won’t be working for a while yet I am looking for a job.  Not having much luck as this area is economically depressed.  There was an article in the local paper about how even the teenagers were having trouble finding summer jobs.  I just put in an application to deliver newspapers so if you all could pray that that works out I’d really appreciate it. Ummm, also pray that if it works out that I make some $$ at it since I have to use our car and pay for gas.  We are worried about but willing to take a chance on it since there isnt’ much around here and what I do find has to be flexible enough to take Ken to Cleveland at least once a week, sometimes 2x, for the next 3 mos or so.  So, my options are limited

Everyone keeps asking us if we are moving home soon and trust me, we want to.  We plan to move back as soon as finances allow and we get Ken’s final prognosis.  The Dr’s won’t do any tests on Ken to see if the RT worked until Fall so we have to wait until then.  I’ve not been able to find a Dr. back home who is a specialist in Ken’s type of cancer (ACC, if any of you know of any, PLEASE let me know) so once we do move back we will have to drive to Cleveland every 3 months for his check ups.    Also, the Prostodontist is just now starting on the “reconstruction” of Ken’s mouth with prosthesis’ now and that will take at least 8 weeks.  If we had moved back home we’d still have to drive to Cleveland weekly because this guy is the only Prostodontist in OH.  At one of our last appts there were people in the waiting room from Boston and Florida.  As soon as all of this is done, and finances allow, we will be back home.  I can’t wait.  One of the hardest things of this whole nightmare we’ve been living in the past 8 months is that we are so far away from our family and friends. 

Throughout all of this we have seen that God will take care of us, no matter what.  He works through people in amazing ways.  We know we have people praying for us, people doing amazing things for us, people just being there for us and we are comforted by that.  Thank you everyone, for all the prayers and everything else you’ve done.  Someday I’ll write about how during his nightmare, amazing things have happend.  We have been blessed by so many people, relationships have been restored, we have gotten closer to people, Ken and I have gotten closer, people have helped us in ways we had never imagined before.  One day we plan to keep the chain of love going, helping people who need it, being there for someone in the hardest days of their lives, doing little things to show someone how much we care.  This is something we all know to do, and try to do, but things get lost in the day to day hurry-scurrey of life and you think, “Oh, I have time”.  “I can do that later”, next week, next month now, next year.  This  disease has taught us that there isn’t always time, we can’t put things off, we have to do now.  It doesn’t always mean grand gestures, little things count to.  We try to do that now, and can’t wait until the day when we can do more.  It will come in time, I know it.

Thank you for keeping all of us in your prayers.  You all are in ours too.

Wendy

The food the insurance co. was paying for was producing tons of stomach acid, which was contributing to the vomiting also.  I fought with the insurance co. for about 2 weeks to get them to cover another brand of food which Ken had had been on about a week a little over a month ago that was given to him so it wouldn’t expire and go to waste.  When he was on this food his vomiting, while not completely gone had noticeably decreased.  They didn’t want to cover the other food because it was more expensive, and “pretty much” the same as the other brand, just made by a different company.  Well, in this case “pretty much” made a big difference.  Persistence paid off and they finally agreed.  He has been on the new food a few days now and has not vomited very much at all.  Still too much though.  One of his Dr’s told me that it takes a person a long time to starve to death.  Nice huh?

He has lost another 4lbs in the past week, as of Sunday I think.

Now for the good news.  A little over a week ago Ken has been able to swallow a few sips of water, broth, etc.  The past 3 days he has been showing signs if improvement.  He doesn’t look quite as pale.  We were told about “Magic Mineral Broth” which is given to Chemo patients that are having problems with nausea.  It has some interesting ingredients in it (seaweed for one) and vitamins and minerals.  Ken is able to take a couple of sips of it.  Sometimes he is still not able to swallow.  If he can’t swallow, I stick it in his tube.  I really do think it has been helping.

Ken really doesn’t want to go back to the hospital.  We have an agreement that if he starts doing worse or losing more weight, he will go with no argument.  Even though he has lost 4 more lbs. I agreed to not insist he go now because I can see that’s he’s doing a bit better.  Also to give some time to the new food to work.

Ken is on a mission to prove to me (and himself I’m sure) that he is feeling better.  He has taken the kids and I kite flying, fishing and rocket launching.  While these adventures really wear him out, it’s nice to see him out having a good time with us. 

He is not out of the woods yet.  Please keep praying for him.  And for the rest of us.

Wendy

He had a rough night last night and was up most of the night, throwing up once and choking the rest of it.  He finally settled down about 7am and has been sleeping since.  I hope he has a better night tonite.

If you guys could say some extra prayers for him I’d appreciate it.  He’s really depressed and tired.  He’s tired of being sick and told me last night that he doesn’t even feel like he’ll ever get better.  It’s been 12 days since his last RT treatment and he was hoping to be off his feeding tube treatments, or at least able to swallow by now.  While I think being completely off the tube feedings by now was a bit optimistic, I did think he’d be able to at least swallow by now, but he can’t.  Everytime he tries to swallow even just water he chokes.

This whole thing has just taken a huge mental toll on him.  Please keep him in your thoughts and prayers.

Wendy

There is also the issue of the infection he has in his ears, behind his nose and tongue.  They weren’t treating that specifically.  So, the nurse left a note for me in Ken’s chart to followo up on that, since the Dr. came in about 6:30pm but left because Ken was supposed to be set up for isolation but wasn’t yet.  He said he’d come back but by 8:30 he still wasn’t back so I had the nurse page him and he had already gone home.  ::sigh::  Hopefully I can get that straightened out tomorrow. I sure don’t want that infection to get worse while they are treating the other one since the nurse said the antibiotics they are giving him for his gut

We are hanging in there.  Please keep us in your prayers.

Wendy

Ken has never really stopped vomitting since the last time he was in the hospital.  It slowed down alot, but never completely left.  Well, for the last 3 days it has been increasing, getting really bad last night and today.  So, he’s back in the hospital as he can’t keep down any of his meds (including his anti-nausea meds) or his feedings.

So please keep Ken in your prayers.  He is just so tired of all this crap.  And I’m tired of it. 

RT is a cumulative process, so we were told things will probably get a bit worse before it gets better.  I know God is not supposed to give you more than you can handle.  I keep repeating that in my mind.  I cannot imagine how he could be any sicker than he already is.  He told me he sees how people just give up not caring if they live or die.  He is really miserable and has been for weeks.  Hopefully all of this sickness means that the RT is really working.  The surgeon told us yesterday we might not know for 3, 6 or 9 mos whether or not it worked.  ::sigh::

Please just keep us, especially Ken in your prayers.  We just need a vacation from all of this sickness and hospitals and medecine and tests.

Wendy

Wendy