Chapter 20

***If you’re just joining the blog, it may be helpful for you to read the first few posts. This is a story about my walk with my husband Paul in his journey with cancer. These are the email updates from 2011 and 2012, they were used to keep everyone in the loop along the way- with some of my own emotions and thoughts sprinkled in.

Update 4/30/12

Monday PM

Hello Everyone,

I am still asking everyone to send Love to Paul… it’s tough- he is pretty angry and I know the one thing that will conquer that- is love.

He was finally moved to a private room today. I am so happy! I can now stay in his room with him… I have stayed several nights in a hotel and several nights in the waiting room on the couch or recliner. It’s not so bad… they are super here. They give us pillows and blankets. Because of the U of M graduation, hotel prices have jumped from $60 a night to $159 a night and up.

Today was day 6 of his ten radiation treatments. I am not sure how he will be affected- they said some of the side effects are fatigue, and possibly some nausea. So far… he is good.

Thank God he has his own clothes here- he has jeans and sweatshirts- and he has gotten out of the hospital on a little road trip the fast few days… We asked the nurse if they need him for anything- and then we head out. Yesterday we took him to World Market and The Produce Station, and today we just ran to Kroger and for a ride around town. It brightens his mood tremendously… and he seems to be a little less agitated. (Also another visit from his Princess yesterday.)

I can’t begin to imagine what he must be thinking… but I know he has not been very happy. They said the steroids and the disease will affect him like this….not to mention the prognosis…

Speaking of which- the Chemo team came by again… Each time they come- the news changes.This is what I feel- is going to happen. I think they will try something experimental. I really do… Because they are still learning about what they are dealing with. It’s not that they aren’t knowledgeable- they are. They have been discussing it with other teams- and they now feel it may help him. They also mentioned 9 months to a year!

I am thinking that as soon as he is done here- he can develop a routine… get things settled… and he will start living again. It’s rough to be in a hospital with grim all around. It’s not easy that everyone on this wing, is an Oncology patient. It’s rough that each person here has his own story about how C has affected them… ugh… my heart aches.

Thank You to everyone for following us on the journey… for prayers, visits, good thoughts, money, love, and for taking care of Paul’s business and my work at the gym too. We love you all!

We hope to head home after his last radiation treatment next Monday… if not before. He may move to a hotel this week to finish out as an outpatient- and possibly go home Friday… not quite sure yet. I’ll be honest- that scares me. How do we transition? I guess we will find the strength for that- once we get to it.

God Bless…

Peace and Love,

Denise

 

***

Side Note:

Most days we would go down to the lobby and people watch. Somehow it soothed his nerves.

Here is a picture of Paul- People watching in the hospital lobby… 4.30.12

I look back at this picture and realize how much weight he lost… 😦

 

People watching

He was so edgy… he said hurtful things… would snap and grumble to the nurses or to whoever else he could… mostly it was those who were trying to help him. He couldn’t help it, the pressure on his brain from the tumor and the steroids were making him a bear. The steroids were also affecting his glucose levels, there were times when it was over 500.  I remember taking a lot of time-outs,  I would go my own way… cry- sit by myself and read… or grab a coffee or a snack and just hang out. Then the next moment- he would forget he was even angry.

It was difficult to see past the disease and to not take it personal. How do you allow someone to hurt your feelings- show up each and every moment and know that you were going to be the center of his anger?  How do you focus on the love and not the disease? How? I don’t know… but in the moment… you just do. You just do it… and you deal with the consequences later.

These are the things I am healing now. I am a firm believer that you can’t just stuff those feelings. I am a firm believer that if you don’t deal with the pain, the emotions, the fear, the stress… it will eventually come out in another way.

I also believe that those hurt feelings will turn you into a victim if you stay in the pain.  If I feed those emotions- I stay stuck. A victim blames others for the circumstances. A victim always lives with “what ifs” or it should have been… a victim gives away their power. A victim is not who I want to be… so I will continue to heal… continue to make right what was wronged. I will own my part, and I will make peace.

***

 

 

 

Chapter 19

***If you’re just joining the blog, it may be helpful for you to read the first few posts. This is a story about my walk with my husband Paul in his journey with cancer. These are the email updates from 2011 and 2012, they were used to keep everyone in the loop along the way- with some of my own emotions and thoughts sprinkled in.

 

Thursday – Saturday 4.28.12

I want to thank everyone for all the prayers and to ask that you continue to flood us with love. The last couple of days have been tough on everyone. Nobody likes to hear a timeline when you’re talking about how much time you have left with loved ones. It’s terminal.

The lesions that were detected in the MRI and Pet-scans are of the same cells that were treated in his tonsils. Squamous. They are unclear about the origin. Might have metasicized from that spot before the treatments, or it could have came from the nodules in his lungs- which are now believed to be the same.
They did a biopsy on the lump on his back, this was the one, they felt would most likely not be squamous…  and it was. It normally doesn’t show up in skin, or in muscle… And it was there.

Everyone is baffled. Nobody thought it was possible. The Radiology Oncology Team said that the Tumor board that meets on Wednesdays is made up of some very worldly and educated specialists and NONE of them have has ever seen anything like this. They don’t have a full plan in place and we won’t know what and how they will treat him beyond the initial full brain radiation.

There are six more treatments of radiation. The next step is to keep him strong during the radiation. Keep his weight up, keep him moving and to not lose muscle mass. Then… when he is done with that part, they will discuss options- if any– for chemo.

Typically, they do not treat squamous with chemo to kill it… Usually it’s just to take away the symptoms. So- we need a miracle. A bunch of miracles. And here’s the thing that makes the most sense among all of this confusion… Because they don’t know… because they can’t explain… Because they are baffled- they won’t be surprised when it’s no longer there… Another thing they won’t be able to explain.

To us… We will know. To them… It will be a scientific glitch. My God works like this. Your God does too… And I thank you for embracing this with me.

I debate often about how much to say… Because there are times when I feel hopeless. Then a ray of light pops in… And I see and feel the prayers. There are times when I have sobbed so hard that I shook… Then two seconds later I am calm. It’s God holding me up, when I want to give up.

I told my friend Kitty, that I didn’t want to be strong. I was tired of everyone telling me how strong I was… I don’t wanna be strong. I just want to curl up and fall apart… I just want to be Paul’s wife. I don’t wanna do this. Then in an instant… I feel filled back up. I am strong. I am whole. I am Paul’s wife. Together we will be okay.

He is in no pain. He is walking the halls and eating every meal. He is still wobbly on his feet, but that’s because of the swelling on his brain. He is scared. I am scared. But… Only for an instant… We can’t hide in the fear and let this win. In the love- we find peace.

Our timeline has changed. At first we were told 6 mos to a year. Today we were told three months. Then someone else came in and gave us a glimmer of hope. I am not in denial… I understand why and how they give those times. I am just choosing to believe the best case scenario and believing for a miracle.

The hope came from the chemo team. They said we would discuss options when he is done with radiation. This leads me to believe that there is room for error on their part. Room for my miracle. Room for Paul’s miracle.

When we told the radiology oncology team we wanted to sell everything and move to Hawaii and live on a beach… he said that he has seen people who do it and live for several years…so when they say a time line… it includes really old sickly people… And everyone in between. Paul is healthy. He is strong. He is going to be here for a few more years.

Thanks to the company who have made us smile, laugh and forget about where we are.

Thanks to the friends who have added us to the church prayer lists and those who have traveled miles to hang with him. He feels very loved.
Keep the light, prayers, good thoughts, love and healing coming… We need it.
Peace and Love,
Denise