Chapter 6

Update 3.15.11

Tuesday, March 15, 2011 10:22 AM

Hello All,

I forgot some details in the last update… I also have some new thoughts and news to share.

When we met with the Oncologist, she asked if Paul would be a part of a medical study. There will be two groups- a controlled group and a monitored group.

They want to measure the effects of radiation and chemo on a patients muscle tone. They will measure muscle mass throughout the treatment and the study will help future patients by showing them the difference between exercise and no exercise. One group will have a personal trainer and will work out three times a week for one hour in a gym. The other will just be monitored. Our hopes are obviously that he gets the trainer… but it will be interesting to be a part of a study regardless. (Why not give back a little- as soooo much has being given to him?)

The other important thing is this… We are going to start referring to the cancer in the third person. No longer will I say things like- My husband has cancer… I will now say- they detected cancer in my husband’s tonsil. I am trying to not give the disease any power. Believe with me- and speak in the same manner- please. This is curable. Bottom line.

I will not live in the fear. I will live in the love. By not allowing it to own him or define him…. I am not giving it power over him.

Don’t get me wrong, there are still times when it sweeps over… I shudder… or it hits me upside the head… and I cry. But, it doesn’t last long. I don’t react- I center in my heart and in the love.

Last Thursday Paul went to the dental dept. for the teeth extractions. Ugh… they removed 10 teeth. Of course, it made eating- a little difficult for a few days. We got through it and he is almost back to the eating machine he is… his hope is for ribs this weekend. The reason for the teeth- again- is because they need a clear path for the radiation. They can’t risk that it will weaken the teeth- causing an infection to set in. He still had his wisdom teeth- so along with those four- they took six more. I think when you can’t eat solids- you crave them even more. Most of us wouldn’t starve… we could eat smoothies- scrambled eggs- you know? But when you’re forced to just eat those things… you want everything else! Like I said- we got through it. One more step on the journey.

Paul left this morning for Ann Arbor to be fitted for the radiation mask. I couldn’t go this time- because of work. Although the owners of the gym are great people and completely understand- I have responsibilities too. I save those days- for the real important trips. If I need to be there- I go… if it’s something routine- then he goes. That’s the hard part too- what is routine? Holy moly… how life changes. What used to be the norm… doesn’t even exist in today.

I had a very nice chat with a friend yesterday… ((Kitty)) she helps me to understand in many ways that I really am okay. It is hard to process all of these feelings at once. You find yourself doubting simple things. She reminded me that this is faith in action. When we don’t know… and we just continue the path… just continuing to move forward… that is faith. It’s wonderful to have friends who support us when we just don’t know… I find that I really am- okay today. But it is nice to be reassured that I really am!

God is providing at every turn. Thanks to friends and family for continuing to shower him with love and prayers. Jennifer and Andrew- Paul’s oldest daughter and son in law- are loaning him a car! That relieves some worry… We won’t have to buy another car to make the trips safe. Thanks, Jennifer and Andrew!

His younger daughter, Melissa- has arranged with her boyfriend’s family (they live 20 minutes away from the hospital) to have someone help Paul adjust. He will have an office space to work from that is just ten minutes away and a place to hang out when he is bored out of his mind. Thank you, Melissa, Ron and Karen!

Again- a reminder to please not post on his or my face book … you can share these emails with others and respond back to us- we believe the more people we have praying and believing- the better! Thanks to everyone for your love, loaned courage, faith and prayers. We feel it.

Be Blessed & Enjoy the Sunshine!

Denise

Chapter 5

3.8.11

 

Tuesday, March 8, 2011 8:59 PM

 

Hello everyone,

We met with the Oncologist this morning and got a lot of our questions answered. She is an amazing Dr. and has a great assistant, together they will overlook the entire procedure. They let us look at the Pet Scan and they assured us that there was no other cancer- other than in his neck. It’s localized in his left gland and his left tonsil. (The Pet Scan is where they use that sugary like substance that adheres to the cancer and take pictures like a cat scan.)

It is squamous cell cancer- it is treatable and curable.

They recommend radiation and chemotherapy as treatment- but there are many things they need to do first. The treatment is 7 weeks long and will begin March 29th- barring no unforeseen circumstances. The radiation is once a day 5 times a week- for 7 weeks. They will do 3 or four chemo treatments too- about three weeks apart. The radiation will get stronger as they go through the sessions- and they said it will get tougher. The first few weeks- he may not notice any differences.

He meets with the Dentist on Thursday- they have to pull about nine teeth. He still has his wisdom teeth – along with five others that need to go. The reason is because the radiation may weaken the bone- the teeth or the tissue- causing an infection… if an infection were to set in- he may not even realize it until it was too late… he could lose his entire jaw bone. So- the teeth must go. (Besides we know some really nice Dentists here…. that’s the least of our concerns!)

They will have to fit him for a mask. The mask is for the radiation- to guide the dosages and to keep him immobile on the table during the treatments. He has to have the dental part done first- then on March 15th he will meet with the oncologists again to design a mask. The mask will protect the other parts of his face and neck from the radiation- it will have little holes in it- and the radiation is IMRT- which is top of the line technology. They are able to guide the radiation in stronger dosages to the tumor and less in other areas. They will treat both sides.

Once that part is done before treatment- he will need a feeding tube installed. When they do the radiation- he will lose his taste for food- his mouth may be sore- his throat may also be raw or uncomfortable. They can’t afford for him to lose any weight- and be weak during the procedures. (Because the mask won’t fit him if he loses weight…)

This is just a precautionary measure- they hope they never have to use it- but will install it just in case… Once they start the radiation and chemo- they wouldn’t be able to do the surgery then to install it- so they do it up front.

The treatments will all take place at the VA Hospital in Ann Arbor. He will also be staying there during the treatment. They have rooms they have converted from hospital rooms- to hotel rooms- they call it the “Hoptel”- and it’s all covered through the VA. They will give him meal vouchers- they have a library- and he will have freedom to roam as he chooses around Ann Arbor. He plans to come home each weekend- and maybe few trips home during the first few weeks.

The issue would be travel expense… time… and if he feels up to making the trip. We will make the best of it- but if anyone knows of a car to rent for a few months- or a cheap descent car to purchase… we may be in the market! We can do anything for 7 weeks… it’s only 7 weeks…

I guess the scariest stuff is out in the open. We have a plan. It’s not the journey we would have chosen- who would? But we are ready. It’s not going to break us… we really are going to be okay. It’s tough at times… it just sort of hits you… the littlest things move you- or jolt you to reality… then as fast as it came… the tears stop and you again know- you are okay. It comes in waves.

So in the meantime- we need to pray- send love- positive energy and know that your prayers are being answered. It’s amazing that it’s not anywhere else in his body- and there is a plan. A reminder to everyone to please do not post on his or my facebook- you can email me back with questions… but he is not willing to live his life on facebook- he doesn’t care who knows now… it’s just a matter of privacy for him- and I respect that. Add him to the prayer chain- and let’s all lift the whole situation to the healing energy of love… that’s where I think the healing begins- in God’s love.

Thanks my family and my friends- we love the encouraging words and prayers- I share your responses with Paul… he feels the love.

Love to all,

Denise

 

** Here is a side note to what was happening and what I was writing about… We were scared… but we tried to be strong. I remember sitting in the Radiation Oncology Dept and he didn’t agree with many things- he almost refused two things… The teeth and the feeding tube were things he said he wouldn’t do.

The Dr. convinced him that both things were necessary… but you should have seen him bargaining with her. He said- I have no problem with eating… I will do what it takes. I will force myself to eat. I don’t need the tube. She said everyone feels like this- but because it wouldn’t be possible to do it later- it was necessary to do it now. She also said- hopefully you don’t ever need it… and that was the clincher… The teeth were more of a vanity thing than anything else. He knew he had some issues with his teeth… a few small cavities… but he didn’t want to have a bunch of teeth pulled. Dang… who would? He just didn’t know they’d do it all at once… with him sitting in a chair. Yikes. Ten teeth… gone. Yanked out with local topical anesthetic…

***

Chapter 4

 

(No subject)

February 24, 2011 11:51:36 AM
Just wanted everyone to know that the talk with the surgeon Tuesday, went well. It was not a biopsy. He needs to see what was going on first and now has the biopsy scheduled for Tuesday at 6:00am.

He is the head surgeon at the U of M hospital as well as the VA hospital and he has been specializing in this field for over 16 years. He deals only in ear, nose and throat issues.

He said Paul’s primary Dr., did the right thing by ordering the tests and he was happy that he didn’t try to treat him with antibiotics etc… He will not know exactly what he is facing- until he sees the results from the biopsy. They take a small scope and put it into his throat and take small tissue samples. He did say, that if we wanted his opinion as to what it may be- he would say it is cancer.

Squamous cell cancer.

His left tonsil and the gland on that side of his neck are enlarged. He showed us the CAT scan and the reason for the concern. He was a great guy, he made him feel very secure about what he is facing.

He said it is treatable and curable.

This type of cancer is usually not spread in the whole body, it’s usually isolated. For precautionary reasons, they are doing a scan of his chest today. The surgeon liked that they had already ordered it.

Again- they are not completely sure- until they do the biopsy.

Continued prayers and love are all appreciated… we can feel it- thanks in advance!

Be Blessed,

Denise

 

(This is the email from Paul to me)

Monday, March 7, 2011 11:41 AM

They just called me back and said it is cancer of the tonsil, and needs to be treated with radiation, and chemo. He said my appt tomorrow with oncology dept is to go over the pet scan, and to talk about the treatment. Damm!!

 

 

3.07.11

Monday, March 7, 2011 3:09 PM

Hello everyone,

Paul spoke to the surgeon today, and the pathology report came back as cancerous. Not sure any more details at this point- but I am sure we will know more tomorrow.

We meet with the Oncologist tomorrow morning to discuss the treatment options and the results of the Pet CT. The Pet CT Scan- is the test they ran on Thursday. The best way to describe this test is they inject a mild radioactive substance into the system- they described it as sugary- it will adhere to cancer and illuminate it. They then take a series of scans or pictures of the entire body- from the top of his head to about the knee area. The Oncologist will read the scan and determine where the cancer is located, if it has spread- and a best way to treat it.

There are still many questions and at this point- we don’t know anymore… sometimes that helpless feeling is more than you think you can handle… but again- that’s where a person’s faith comes in. My God is at his strongest- when I am at my weakest.

The Doctor he spoke to is the primary surgeon that we spoke to on day one in Ann Arbor. He said the treatment will be radiation and chemotherapy. (That is what he told Paul today… sometimes it’s because of where the cancer is located- and the main reason for opting for this is probably because of reconstruction with it being in his neck/throat)

He also said that he would want to do the treatments in Ann Arbor. I told Paul that we will cross that bridge when we get there. It’s hard to imagine what… where… and how to make it all fit. We had hoped that they would be able to treat him in Reed City- and maybe they still will… so for now- we’ll just keep praying and everything will work out as it should. If we need to make it happen there… then it will happen there… it really is out of our hands anyway- when you think about it.

So my friends- I continue to ask for your prayers, your love and your good thoughts for healing and safe travels.

I’ll talk to you all soon.

Denise

Chapter 3

Prayers are working

 

Monday, February 21, 2011 1:45 PM

Hello Everyone,

I just want to say thank you for all of your love, support, prayers, emails and general concern. Something is happening- and although we can’t explain it- it feels good. I guess that is what faith truly is… the walking “as if” and knowing that you’re going to be okay.

A few days ago- Paul and I both started to feel things shift. We both sensed that something was different. When we were told that “It could be cancer”… a feeling of sadness, anger, dread and confusion set in. It was like someone deflated us. Our faith tells us- no matter what… we’re going to be okay… people have prayed with me and have said things like- when you’re at your lowest- that’s when God is at his strongest. I can honestly say, it doesn’t make me feel any better when I buy into the fear.

Paul and I spoke at length over the past week- searching, digging… trying to make sense of stuff. It dawned on me what a control freak I really am. The not knowing was driving me nuts. That is faith in the opposite form- right? As long as life is going my way… I am okay. What about when we’re faced with a challenge? All that went right out the window. In an instant- my faith was rocked. My sense of knowing who I am… disappeared. I am a person who likes rules and boundaries… it’s weird- I find security there. I am not the fly by the seat of your pants kind of gal. Nope… I can play by the rules- as long as I know what they are.

All I have wanted, was for someone to point me in a direction. I didn’t even care if it was the wrong direction… I just wanted someone to tell me what to do.

A few days ago, we both surrendered to the fight within. We didn’t even realize that we were doing it… it was just happening. After all of the talking and processing, we realized that we already had our answer.

That was the key! As soon as we both “knew” we would be okay… the peace and calm came back.

The fear left, just as quickly as it came. There is no reason to fear. Paul is a strong man… I have never met a more determined person in my life! I am writing to you all- my friends and family to ask this… Please- let’s all focus on who he is- who he is to each of us… the beautiful soul that we all know and love… do not give any energy to the fear.

Tomorrow we go for the biopsy- and whatever the results… we know- we are going to be okay. Paul just left my office- I read him what I wrote- and he thanked me. Please don’t post on mine or his Facebook… we don’t want to live it out in public. He is very private, as you all know… so keep doing what you’re doing- and we’ll let you know what’s what in a few days.

 

Thanks everyone- and God Bless,

Denise

 

Namaste~

I honor the place in you

in which the entire Universe dwells,

I honor the place in you

which is of Love, of Light and of Peace,

When you are in that place in you,

and I am in that place in me,

we are One.