CSN Login
Members Online: 23

SmithMama2 We lost track of you

Hondo's picture
Hondo
Posts: 5717
Joined: Apr 2009

Karen It has been a while I hope everything is going OK

God be with you

SmithMama2's picture
SmithMama2
Posts: 48
Joined: Oct 2009

Evening Hondo,

I haven't checked the board in a while. I am teaching full time, and I am once again expected to attend the required faculty meetings etc. that I was allowed to miss all fall while Kevin was in treatment and then so sick. So my free time to be on the computer is minimal these days.

As an update, Kevin had a sleep study a week ago. He has sleep apnea, which is certainly one of the causes of his exhaustion and depression. We are waiting to get the results to see if he will be prescribed a CPAP machine to help him breathe at night. It is scary when he goes so long between breaths, and certainly he has fitful sleep because of that.

Next week he will have a barrium swallow test done, as swallowing is still a pain in the neck (pun intended!!!) He is eating more than a month ago, but still not enough to keep a bird alive without drinking the liquid nutrition.

He will also likely have the peg pulled next week, since he hasn't used it in two weeks now that he can drink (and not throw up!) the shakes.

Still he hasn't found a job, and to be honest, he has hardly looked. It has been 7 months since he was employed, and we are not made of money. He didn't have disability insurance, so soon the money will run out from our home sale, so he has got to pull himself off the couch and away from the computer to find work, or I will have to get a second job. I hope this is not the case, as I think I will quickly become resentful of that.

I am wrestling with his psychiatrist to change his anti-depressant, since neither Kevin nor I see that his current med is helping to lift his depression. I guess I am hanging my hopes on that CPAP machine giving him better sleep/rest/energy, so say a prayer that the doctors choose to go that route.

Still he isn't playing guitar much (and right now we can't afford those new hearing aids), and he isn't doing woodwork/guitar building (which he formerly LOVED), because the workshop isn't heated, and it has been too cold to work there, even with three space heaters.

I see that so many positive things have happened for Kevin since all this began last summer:
• we sold our house in 3 weeks and my childhood home in 1 so we could afford to buy and renovate a smaller downsized home
• we paid off all our debt (except our new small mortgage)
• he quit smoking after 32 years 7 months ago
• he quit drinking after 25? years 7 months ago
• he got rid of those bad teeth that had plagued him for many, many years
• he stopped traveling out of town for work (which is hated to do)
• he made it through cancer treatment and got a clean PET/CT scan saying he was in remission
• he will soon be rid of the peg tube
• he will soon have better sleep with the help of a machine

He still can't see anything to be happy about though. I am trying to convince him to go to counseling, and hopefully at some point he will find the right antidepressant to help combat his gloom. I feel that I too am probably falling into depression, as it has been a helluva year around here. But someone has to keep turning the wheel, so for now I am putting it aside so we can continue to make ends meet.

Our house is finally unpacked from our move, but there is still a number of minor things that are yet to be done by the contractor. It will be good when our home is really our own without workers around, even though they have been very nice to us.

This is probably more than you wanted to know, but there it all is.

I thank you for your prayers for us. It is great to be part of a community where your presence is missed. I hope all is well with you and your wife too. I will read a bit more on the board and try to catch up on what I have missed these last 3 or so weeks.

Best wishes!
Karen

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

Good to hear from you, Karen, with this update. Please ask Kevin to consider keeping the tube awhile longer. I haven't used mine for 9-plus months, but still have it, and will for at least another three. It is my experience that there is an intital mental need to get rid of it; but, after awhile, one can come to see it as good to have kept. My Onco was the one who said I should keep it for quite awhile. She has, since, said I could have it removed, but it is my choice to keep it. If Kevin is only a couple weeks from having last used it- seems to me to be far too early to have it removed. Please, just consider this.

kcass

Hondo's picture
Hondo
Posts: 5717
Joined: Apr 2009

I am very glad to hear from you and to know that you are both doing ok. Cancer has devastating affect on the whole family whey anyone is infected with it because it causes so much change. Going through treatment my wife also told me that I was a pain, not in the neck but the lower part of her rear.

Sleep apnea is not good I do hope he is able to get the CPAP machine to help as he will be more relaxed getting some good sleep. Depression will be a hard thing to deal with; I would almost cry when I looked in to the mirror and could not see the person I use to be, but this stranger looking back at me who I have become.

Don’t be afraid to question or tell his psychiatrist what you are seeing in his behavior, if the drugs are not working they need to change them to something that does work. Sometimes our doctors get too busy to give us the personal attention needed when they are dealing with so many they forget we are human.

I pray that his eyes will open and like me see the beauty in his wife who had stood by him through all of his trials. When I went through my first treatment all I could see was my self, poor little me. I did not realize the trial my wife was going through and the battle she was fighting all by her self, I had her but she had no one. God gave her the wisdom to pull both of us out of the fire, and I am praying that God will give you what is needed to pull your life back together.

I am glad to hear that Kevin has giving up smoking and drinking, not that any of it had caused his cancer but could very well been a contributing factor.

I will continue praying for you and Kevin, I understand if you can’t get on everyday, just drop us a note now and then so we know you are doing OK.

God bless you
May God lead you through the valley to the place he has prepared for all who put there faith in Him

PS: I hope you are not an English teacher as I have failed English quite a bit and treatment has made it all the worse, so please excuse miss spelled words and grammar.

SmithMama2's picture
SmithMama2
Posts: 48
Joined: Oct 2009

No, Hondo, I teach kindergarten at a Waldorf school, which means academics are delayed until the start of Grade 1 (as it was when I was a child.) Kindergarten is a time of play, of experiencing social interaction, of learning manners, of learning songs and verses by heart, of learning to use your hands and your body for good work, of being outdoors in nature for at least an hour a day. It is a refuge for me to be with 3-6 year old children who give such unconditional love and hugs each day.

I feel lucky to have our family in your prayers. Thank you for being such a blessing on this list.

Karen

wooddust
Posts: 1
Joined: Jan 2010

Hi Karen,

Reading that your husband has been hobbied with woodworking I read somewhere that there are some link related to the wood dust from some type of sinus cancer. Try to google with " wood dust tumor" .

Regards

SmithMama2's picture
SmithMama2
Posts: 48
Joined: Oct 2009

Yes, we have read about that too. He was given a beautiful new table saw for his birthday, but has yet to use it since we haven't yet figured out the dust collection system solutions. They are expensive, and he realizes the incredible importance of keeping his body safe from the micro particles of the dust. He does have a mask to wear, and a shop vac, but those are only a drop in the bucket of what he really needs to keep himself protected. So that will come. He is a research king, and he has been tying to uncover the most cost effective yet safe plan for working with the dust. Different kinds of wood yield different dust toxicity levels. Being a guitar builder, he uses many exotic types of wood, and these seem generally more toxic than domestic woods.

I guess he lucky that he came upon this hobby only 3-4 years ago, so he hasn't had a lifetime buildup of dust in his system that would compound his cancer risk.

His woodworking pulled him out of depression in the past, so I am hopeful that we can work through this dust collection thing soon so he can resume his hobby again.

We both are ready for the return of happiness again.

Karen

cwcad's picture
cwcad
Posts: 117
Joined: Nov 2009

It sounds like you and your husband have had a rough go these last months, Karen. The experiences you describe are like singing the same tune but a different verse. My route to recovery sounds so similar to your husband.

Keep your spirits up as much as you can. I wish I could say for sure that everything will get better quicker but everything will continue to get better as the days go by. Rest is very important as I thought I had sleep apnea and went thru the sleep tests to determine it. My doctors had mixed diagnosis because one said, "yes" and one said, " aHHHHHHH Maybe?" It has become all moot since my thyroid was not working up to snuff. With the addition of my thyroid medicine my road to recovery has smoothed considerably. I also lost a lot of weight which changed my sleep problems for the better.

I feel bad that you have to work to keep things going and then add to it the care for your husband the pressure must be intense for you both. The one constant and positive thing I have received each day since starting my fight with cancer has been my wife. For me the money has been a problem from the start of this. Three years in February of 2010. I needed money when I was healthy and working. That need did not stop while I was in treatments. I have learned to live with less. Downsizing is merely perspective. But the truth is my wife has picked up my slack.

I have found a saying that is uniquely funny to me, yet true... It is not the high cost of living that gets me... rather.. it is the cost of living high that really takes its toll. Living with less does cause me some concern but living is the key. Keep living and posting to us as you and your husband progress. My prayers will be with you!!!

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network