Chapter 31

***If you are just joining the blog, you may want to read a few of the previous posts to catch up,  this is a healing journey. It’s my story, as I walked along side of my husband Paul during his battle with cancer. We began this journey in 2011- these are the emails that I used to keep all of our friends and family in the loop. ***

Paul update 6.26.12

This morning at 3:50 am, my Marine went to be with his son, Paul Jr. I can’t even imagine the party they are having right now in Heaven.

He was sleeping peacefully when the Angels took him home. In his hand, clutched to his chest… he held the cross necklace that Mellissa had given him for Father’s day. 

As my heart aches… I am relieved to know he is not suffering. He was surrounded by loved ones for the past few days. We all got to say goodbye and urged him to go be with his son, his parents, his brother…

We will be having a memorial service at my mom’s house in Lake City- the place where Paul and I were married… Where we started the journey as husband and wife… we will say our final goodbye.

I will send an update when we decide on the date and time.

Please blanket the family in love as we mourn. He is a great man… and we won’t soon forget his strength and his love.

Thank you- Peace and Love to you all,

Denise

Memorial Service forPaul 6.27.12

A Memorial Service is planned for Paul Franklin Henry on June 29th at 2:00. Location is XXXXXXXX S XXXXXXXXX, Lake City MI  49651

Parking will be available along the road, across the street and up the driveway- a shuttle will be running.

Please join us to celebrate my husband’s wonderful life and to honor the man that we all loved so much. A luncheon will follow this casual event… just the way he would have wanted it.

A Military Service- with a heartfelt song of praise for the Marine, that touched so many.

*** Side note

I remember the very first morning that I woke up after he was gone, I showered and went to grab my jewelry.

I looked at my daughter with tears in my eyes. I was so lost.

I asked- “At what point, do I stop wearing my wedding ring?”

I didn’t have a clue. I needed to know – what was right? Is there a rule? What’s appropriate?

This. Is. The. Day. My. Healing. Truly. Began.

Alone. Sad. Alone. Grief is so powerful. What was my job now? Who had my answers? Who could help me?

It’s all a blur… I can’t begin to tell you how many people it took to keep me “okay”. It was a lot. Many prayers, many people sending love…

***

Chapter 30

***If you are just joining the blog, you may want to read a few of the previous posts to catch up,  this is a healing journey. It’s my story, as I walked along side of my husband Paul during his battle with cancer. We began this journey in 2011- these are the emails that I used to keep all of our friends and family in the loop. ***

PaulUpdate 6.21.12

Hello Everyone,

We are home. They released Paul yesterday when I got back to the hospital and I was able to bring him home.

He never had pneumonia.

It was the disease causing the fever. The disease causing the pain.

It’s moving and spreading throughout his chest. Primarily his lungs and liver… these are the two major organs that will be affected.

When they diagnosed him as terminal, they told us this would happen… and they were right. He was so lethargic because he wasn’t producing blood. He wasn’t strong enough- or should I say- his immune system was not strong enough… because God knows My Marine is strong enough!

He came home and has barely sat down. His energy level is higher. He kept putzing outside for hours… he built a bonfire and just sat in a chair and watched it. He burnt every scrap piece of anything he could find… he even ate his dinner by the fire. I whipped up some skeeter spray for him… and he sipped his ice water and dozed and putzed. He is medicated. Hopefully the meds will keep the pain at bay.

We talked on the way home about what the Dr.’s said. Here’s the deal… on Saturday when they admitted him and he was all loopy (sometimes talking lucid… other times rambling…) with a fever and meds… we talked about the disease moving. I told him that the chest x-raydidn’t look good. The tech said that it was really cloudy. I told him I was scared… I held his hand. He told me he was worried too. I just kept telling him that it would be okay. I told him I loved him and that it was all going to be okay…

The next day, he told my mom that he kept dreaming last night about me telling him it would be okay. He said he was really glad that it wasn’t his cancer that was doing this, he was thankful it was just the pneumonia.

We decided then- to not tell him any differently.

On Sunday- the pain started. They started him on pain meds to keep him comfortable… nothing stopped it.

At one point… he was moaning and trying to scrunch up his legs… Hailey hopped up and laid her hands on him and prayed. He had tears in his eyes, and said- “Thanks Hailey Pie…”

They gave him several doses of morphine then resorted to dilaudin… he got real sleepy… then- really playful.

For the next few days- he was happy- soft spoken and gentle- and generally in a great mood. Dopey at times, but always smiling. He joked with Hailey and I all day on Monday, he was flirting and sometimes downright silly.

Jennifer called and said she was coming with the baby- and once I told him that… he kept smiling.

He kept rambling about how blessed we were… how exciting- right babe? Then he’d giggle… we would ask him what he was laughing about- with closed eyes… he’d say- “Them babies…” He was giddy. He was so excited that Lydia was coming to see her bampa.

He was beaming when they got there, he showed her off to all the nursing staff… and he just smiled.

His favorite nurses were all tripping over themselves to give him the best care… seriously… they love him there. Sis came in and gave him a big smooch right on the lips. Troy, Jan and Mikailu- all just dote over him. He had great care. We are very blessed.

He was given four pints of blood while he was there. His hemoglobin was so low. That explains the lethargy.

The next morning- the Dr.’s came again on morning rounds- they suggested doing a full chest cat scan. (They had talked on Sunday about doing an abdominal x-ray….but never did.)

The nurse practitioner- the one that Paul disliked from before… the one I had the talk in the hallway with… was a peach this time!! She ordered the CT. They also changed his antibiotics to something stronger… big mistake… The first time ever- he had an allergic reaction. His lips swelled up… he looked like a duck. Oh boy- he had fun with that. He kept telling Mellissa- take a picture of me.. take a picture of me… OhMygoodness… he was a nut.

We told him about our hotel room- and how unusual the layout was… spooky even.. reminded us of the movie The Shining. Seriously, long narrow hallways… chandeliers hanging and that got him going with “REDRUM”…. he and Troy had a great time with that. All day long when anyone would walk past his room- he would lower his voice to get gravely then say “redrum”. At one point he wanted me to write with his red cough syrup on the mirror. Then Troy said- hey-  “Where’s your lipstick? You should write “redrum” on the mirror…” Oh man, they really got to see his humor this time!

His sister Laura and Jerry came up to visit… also my Aunt Linda and Uncle Burt… It was great to have the support of so many people praying and lifting us up.

I had to go home Tuesday – because we closed on the Dighton house on Weds morning- and I needed new clothes. On the way home, Tuesday night … I realized I wouldn’t be there when they discussed the CT results with him in the morning … I was a little apprehensive about how he would react with the news.

Deep down… we all knew it was the cancer…but we honestly did think that he had pneumonia… they were giving him breathing treatments… several back to back antibiotics… and that’s what they told us.

Mellissa and Mike were there when they talked over the results. It was not pneumonia. It was just the disease. It had caused all of the recent symptoms.

I asked why they were doing the other stuff then?? I guess the blood cultures take 48 hours to complete-  so they just found out that it wasn’t pneumonia. When I got to the hospital… he was edgy. Snippy again. The playful Paul surrendered to the fear. UGH….

We spoke about pain meds. How to administer them. How to keep him comfortable. We also talked to the Palliative Care staff… we also got more information on the difference between Palliative care and Hospice. (We already knew this… but it was nice for the girls to have the information too.) We still have the option of home nursing to come once a week or when necessary… more. 

They released him and I brought him home.

He was out in the yard until after 10:00pm… sitting by the fire. I finally made him hop in the shower and convinced him that it was time to head to bed. He slept pretty good- only woke a few times… but got up and came to the couch at 5ish… he was on the couch when I got up at 6:30.. and is still there now. It’s time for breakfast… I think I will let him sleep.

The biggest difference between now and last week- is the meds. He isn’t taking all the dang pills. Only pain meds.

No more bladder stuff… no more prostate stuff… no more high blood pressure…and no more insulin. He will monitor his sugar and may need Glipiszide if his levels are up… but things are different. He has energy. Although right now,  he is peaceful and relaxed.

Okay everyone- I had better start my day. My coffee is cold and I need a shower. Have a blessed day and know he is in good hands. It will take a day or so to get his routine back… once we do-his mood will mellow… it always does.

Thanks again from the bottom of our hearts for the kindness, good energy, prayers, gas cards… we feel the love and appreciate it all.

Peace and Love,

Denise

*** Side Note

We had a bonfire sing along that night, a few neighbors and family came by. They brought guitars, we sat around the fire and listened to the guys playing. It was such a beautiful gift. Looking back now, it was as if it was all planned…

(Insert wink here)

God is so faithful… especially when I am.

***

Chapter 29

***If you are just joining the blog, you may want to read a few of the previous posts to catch up,  this is a healing journey. It’s my story, as I walked along side of my husband Paul during his battle with cancer. We began this journey in 2011- these are the emails that I used to keep all of our friends and family in the loop. ***

Paulupdate 6.15.12

Hello Everyone,

Nothing really big to report, but because everyone keeps asking how things are going… I thought I’d send an email saying things are okay! Nothing medically happening that is noteworthy.

Auction is June 28th at 4:00 pm. Lambert’s will be doing the auction here’s the website  http://lambertauctions.com/ Its open to the public- so come and join us if you’d like.

Our renter is moving out on July 1st, so we are moving- really soon! Just as soon as we can get things done over there… just some basic remodeling and we should be moving mid July! (For those who don’t know, I held onto my place in Lake City when Paul and I married… we we had it rented. It’s a cozy little home in town, just a few blocks from the lake!)

We close on the sale of the Dighton house on Weds- and we are very blessed to have such amazing people supporting us in the sale… you know who you are. The people Paul was buying the home from- decided they wanted to buy it back. A huge weight lifted… and an answered prayer.

He is still taking his natural remedies- and has added Zango to his daily diet as well… we have a few new supplements and he is eagerly trying it all!

Paul has an appointment with the Oncology department on July 9th in Detroit. He is again wavering. He isn’t sure- but thinks he’d like to at least speak to Oncology again, so I think we will keep the appointment.

I have been reading him the book on the natural cancer healing, he is enjoying it- I think this is why he is confused again about chemo. A part of him says he needs to try everything…then he goes back to … it’s just poison! So… time will tell.

He is weak. I mean really lethargic…sleeps a lot. He can’t even walk outside without getting winded. It seems he is fighting a cold… a little chest congestion… raspy cough… but not bringing anything up. He also had a really bad pain the other night in his belly… a horrible ache… then it turned to constant… he took some pain meds- and it was better by the next day.

When new things happen… we always wonder… Is it the disease? Is it just something common?

My mind will go rampant with thoughts if I let it. We can usually talk each other out of the crazies… if we are willing to share. What I mean by this is… Have you ever had thoughts that you just know weren’t true… but you couldn’t stop them… couldn’t stop them from feeling real?  You know that you’re safe… You know you’re okay… but that dang fear just lingers and it takes over and then you start believing that horrible things are right around the corner… You know you’re covered in love… You know you are very supported and are okay… but… You just can’t stop wondering when is it going to happen?

Now… imagine the diagnosis Paul was given… each little symptom makes you wonder. Is this what it is going to be like? Is this the new normal? Is this how it’s going to work?

We usually talk each other thru those thoughts… I honestly think it’s the love and support from all of you- and the other hundreds of people praying for us. I can’t imagine how it would be without your support.

Each and every day someone surprises us with something. I am so honored and humbled by your generosity and love. I seriously can’t beginto say thank you, enough.

Thank you so very much for the gift cards, gas cards, greeting cards, emails and prayers. It’s not easy to accept such an outpouring… it’s difficult because there are so many other people in need… and you all chose to bless us. We thank you.

I miss you all at the gym… 

Peace and Love,

Denise

***Side Note:

I was very blessed in these days with being able to stay at home with Paul. The owners of the gym had my job covered and people all around us were supporting us in numerous ways.

The gym is a franchise 24 hour place with over 500 members… the people covering for me would print these email updates and post them on a bulletin board at the back of the gym. I was told that it was impossible to do any work because everyone kept stopping at the office to get an update. The emails began as a way to gain support from a few close friends… and grew to touch hundreds.

Many people scanned their key fob then walked directly into the board to read the update. It was surreal… I had such loving support and caring people all around me. The last count for the email updates was 120+ and there were hundreds of people in recovery who knew and prayed for us- my friends and family and the people they passed the emails on too- hundreds of people from the gym, my bookclub, people at Paul’s work… and complete strangers.

I received email messages from total strangers. People who had gotten the email from a friend and wanted to encourage us. I haven’t read through the emails recently- it’s been over two years… until today. Today I read them again- they are so encouraging, so uplifting, and all of you- kept encouraging me to keep writing.

Where does this voice of doubt come from? The one that says- really Denise? Come on- they were just being kind… You aren’t a writer. You never even went to college.  I am not sure where that voice comes from. And today- I don’t entertain it. No- I am not a professional writer.

I am a person who walked a scary path. I survived and want to share my story of hope.

Some day, someone else will read this publishing and know they are not alone. My wish is that maybe just one person will find a piece that feels okay to them. My dream is that it will help someone process the grief they are experiencing… and today- that voice that sends those messages of doubt? I know I must honor her. I must honor those parts of me- in order to celebrate the other parts of me. I don’t feed her tho… I don’t hang out with her. I don’t let her tell my story. The person who survived the walk alongside the Marine who didn’t… well- she is the one you’re hearing from today.

***

Paul update 6.20.15

Hello Everyone,

I am home now- came home last night- Paul is in the VA hospital in Saginaw. I brought him to the ER and they admitted him with pneumonia in his left lower lung area. It has been a rough few days- he has had a fever quite a bit of that time. He has had trouble adjusting to pain meds and also an allergic reaction to an antibiotic.

Please keep us in your prayers and good thoughts.

I am not going to go into detail about our struggles- I am going to praise God for his blessings. Seriously… we have had the roughest but the best few days! Paul has been laughing and joking and has had the best temperament during this stay.

As I sit here sipping my morning coffee… my eyes tear up with joy and sorrow. I am overwhelmed by the peace that I have been given. There are so many thoughts that swirl in…  then they swirl back out. The thing I do know is this… we will be okay. No matter what happens. We will be fine. This is just the beginning… really. I am so grateful for the love that we have.

This is what sucks… pardon me… but it does. Some people never get to experience what we have.

Some people go through their whole lives and don’t know this kind of love…

I have been given one of the greatest gifts God has to offer… and I am so thankful. It breaks my heart to know it’s only temporary… to know that in this human body- that I won’t have it forever… but in my spiritual body- I sure will. 

Paul is surrounded by love… Please understand that this is a time for our family. (And believe me.. we have a huge family!) Don’t take it personally – but we are asking to please give us some space. I know I have allowed everyone into our lives with these updates… and I love all the support we have been given. Financial, emotional,spiritual… the list goes on. What I need from everyone is to just send love and prayers. Lift us up- surround us in love. Please wait for the next update… I won’t be answering texts and such anymore. I need to focus on us.

I don’t know how much time we have…it could be months… it could be years… honestly- I do not know. My heart tells me it’s not the latter… we have many things that we need to do. When you think about Paul- just pray. When you wonder how things are… know that they are okay.

It’s not going to change much… and the details don’t matter at this point. Just know that I am taking care of me… taking care of him… and God is taking care of us both. The spiritual energy field that surrounds us is huge… the support that we have is wonderous. We have such beautiful friends… amazing people who take the time each day to help surround us in a blanket of love…

Thanks to everyone again for the giftcards- gas cards- emails- and greeting cards… we are so honored to have you all as friends.

Peace and Love,

Denise

*** Side Note:

Paul had a lot of pain in these days. We found out later that it was the disease in his bones. Bone cancer is so painful.

Once they got his pain under control- he became so peaceful and very playful. I loved this time with him. Hailey was there every day with me and didn’t leave my side. She was reading him jokes and stories from Facebook… We now know these as Meme’s- he thought they were the funniest things!

At one point- he said through closed eyes- with a huge smile on his face… “Cody and I are the luckiest men in the world- aren’t we?”

One of the greatest gifts I think anyone can give you is their time. Those days were hard… but rewarding. I am forever thankful for the time everyone gave us.

Another thing that happened while he was in the hospital- was that his social security disability was approved and he got a check for back pay. A friend of mine told me to let them know that Paul had a failed attempt at going back to work. I wasn’t familiar with any of that… so I just called the Marine at the Soc Sec office and told him those words. He started asking me questions-  and by the end of the conversation- he said he would be approved and he would get it going right away. Because Paul was off work in 2011 with his treatments and then with his recent diagnosis- they were able to use the original dates and approve his claim.

God had our back on that one too.

***

Chapter 28

***If you are just joining the blog, you may want to read a few of the previous posts to catch up,  this is a healing journey. It’s my story, as I walked along side of my husband Paul during his battle with cancer. We began this journey in 2011- these are the emails that I used to keep all of our friends and family in the loop. ***

Paulupdate 6.2.12

Hello Everyone,

We are in Troy tonight. Paul is scheduled at 6:30 for surgery, tomorrow morning… So we came down early.
Today was a great day. Each day he seems to have more strength.

It has been really tough for him to do daily tasks… So when he walked around the driveway yesterday with his ski poles as walking sticks, I was excited. He struggles, he is so weak. His body is betraying his mind.

He thinks he is being lazy because he rests… I keep assuring him that his body is doing everything it can to fight… And it takes a lot of strength to fight… So try to give yourself a break. It’s tough tho… He’s a man… He’s a Marine. He’s tough… So when he gets tired or light headed… It frustrates him. I can’t imagine how humbling this is for him. It melts my heart to see those tired blue eyes staring up from his Calgon bath as I shave his head… I wish I could give him my strength. I wish I could fill him up with love and protein and he could be- all better.

My sister and brother in law came over this afternoon before we left. Over the past few days we have talked about how to calm the crazy in our minds. How to change the doubt and the fear into a heart of gratitude. How do you stay positive and up beat when the outlook is grim? His daughter gave him the sinners prayer in an email a few days ago… We have talked about our beliefs and what we know as our truth. But when you’re faced with stage four cancer and a terminal diagnosis… I guess you really begin to wonder if your understanding is enough?

Today, he has a new peace. They prayed with us and assured him that he was worthy. They talked to him about their own struggles and their own joys. My brother in law, is also receiving treatments for cancer. They helped him to know that he is not alone. They also told him when he gets the negative and the doubt in his head… To just know it’s not of God. To stop the thinking… Usher it out… And to positively know… he is covered with grace! (My wish- is to not share personal details about the talks… But to let everyone know how good he felt when they left.) Thank You- Don and Cindy.

We hopped in the car and hit the road and that’s all he could talk about. How awesome their visit was. How good and filled up he felt. Cancer is such a lonely disease. It will keep you trapped in your own fears and isolate you from your truth. It will fill you with doubt and anger… It’s a dark place to go alone. I am so thankful we have tiki-torches disguised as friends and family to help us keep light in our tunnel.

Tomorrow at 6:30am, he will have a surgery on his bladder to remove a tumor. He is excited for several reasons. First of all- to find out if it’s the same kind of cancer? The other reason is to get it out of his body! And lastly… He wants to hunt down the Oncologist to speak about the possibility of chemo. The Dr. in Detroit who came to speak to him about chemo got his attention. He had all but pushed every other Oncology Dr. out of the room when they mentioned treatments. This guy was different. Different in many ways. He was so knowledgeable and he wasn’t arrogant. He talked with us and answered our questions and told him of some new statistics and treatment possibilities.

He is now leaning towards wanting to try it. Ultimately- it is his decision. I can only gather information for him and support him with his decision- either way. How do you make such decisions? How do you find peace once you make the decision? Would you always second guess your choice to not try it if you didn’t? Would you always wonder if there was more you should’ve done? That’s another reason it was nice to talk to someone else who is going through something similar. The other thing he is thinking of doing- is switching his treatments to Detroit.

Well everyone- it’s 10:16 pm… And 4:30 is going to come real soon… So I need to sign off. Until next time…

Peace and Love,
Denise


Oh.. Wait… Thank you very much to the gym members, friends and family for the prayers, cards, money and gas cards… God Bless you all… Thank you from the bottom of my heart.

Namaste~

Paulupdate 6.5.12

June 5

Hello Everyone,

Boy… the days go by so quick! We just got home a little while ago from Detroit. His surgery went well- they kept him overnight for observation… then sent him home this morning. They gave him a private room- at his request, so that I could stay with him. He was comfortable- not much pain…it’s usually done as an outpatient surgery- but because of the terminal diagnosis- they wanted to make sure there weren’t any complications.

They sent him home with a catheter and he has to go back on Friday to have it removed and to make sure he can void(urinate) on his own. At first they told us they would just let me take it out… and the nurse even showed me how… then she came back with discharge papers and said we needed to come back. He said that’s just fine with him… he would like to come back – because he didn’t get to speak to the Oncology Dept. He wants to see if he can track them down when on Friday and either talk or make an appointment to talk about chemo.

We stopped in Saginaw on the way home and changed his advanced directive- to ring more true with his wishes… Not sure if I mentioned it before… but when he signed the paper a few weeks ago- he was not thinking real clearly. My thoughts are that he had some brain swelling… because within a few days- he was talking clearly and no longer paranoid.

We have had a busy few weeks… and please know that I update when I can… or when there is news. You all have to remember- there are many of you… and just one of me. If you’d like to arrange a tier to trickle news down sooner… feel free- but I can’t do it. I can update the kids… and if they want to notify aunts- uncles-friends… and so on… that would be great… But I can’t. Maybe you guys can arrange for someone to make one call and then to notify someone else… and so on…  Honestly… I had nine text messages- all from different people and 7 phone calls since yesterday. I know you all worry… but please know this is what I can do- an email update when I have the time.

My main focus is him.

Here is how the past few days looked.

Sunday- I packed a bag for him, packed a bag for me, loaded the computer- loaded the car. (I always have to pack a bag for a week or more, because you never know what could happen and we are too far from home…) Made breakfast, lunch, cleaned up the house… visited with Hailey and Cody- then Cindy and Don… then we hit the road. We stopped to eat… then drove to Troy- I checked us into a hotel- unpacked the car… made sure he had his meds- then did an email update for everyone. Slept horribly…he was up every hour and couldn’t sleep because he was so anxious. We probably got about two hours of sleep… got up at 4:30- showered- got his stuff ready… got him up and into the shower- packed up the car… then got to the hospitalby 6:10. Got him checked in. Got some coffee and breakfast… and waited until he was out. Went to his room and visited with Mellissa… ate some dinner. (Thanks Missy) Ran to the car got my toothbrush and a change of clothes… and crashed by 9:00. We were both exhausted. Got woke up at midnight, at 2:00 and then again at 5:00 by nurses checking in…  got up at 7 and made coffee and got cleaned up. Got him checked out- rolled him out of the hospital and hit the road at 9:30… stopped for bendryl for him…  then for gas and a coffee for me… stopped in Saginaw… left an hour and a half later… then stopped to grab some lunch. Stopped to empty his cath bag… stopped for him to stretch his legs so the bag would function and run down… then finally rolled in here around 3:30. Unpacked the car- changed his catheter bag- got him some coffee- started laundry… took a shower- yeah for me… then made him dinner and logged on here. SO… my point about this is… I really don’t have time to return his calls, return my calls, answer texts, and all the rest. Please know- I understand your concerns… I do… but there isn’t much more that I can do. You all will just have to wait for the next update.

I am not complaining about what needs to be done. I have gladly taken on this role. I wouldn’t be anywhere else. I am so blessed to be right here by his side. Also- there isn’t anything that anyone else can do to lighten the load… really. We have people who help with the things we can’t do… and we really do have it all covered. I do ask for help when I need it- and I do take care of myself… I have great support.

One of my dear friends once told me…”Denise, We really do teach people how to treat us… ”

So… that is why I am asking you all to be patient. He wants to rest and if you are coming by- please call first. Give him the option to say yes or no… It really is about him.

I love you all- I say this all in Love… Thank you so much for your support and your continued prayers and concern. Please be respectful of our needs too.

Peace and Love,

Denise

Chapter 27

***If you are just joining the blog, you may want to read a few of the previous posts to catch up,  this is a healing journey. Its my story, as I walked along side of my husband Paul during his battle with cancer. We began this journey in 2011- these are the emails that I used to keep all of our friends and family in the loop. ***

*** Side Note***

Some of you know about my email subscription from my friend Neale… Neale Donald Walsch, writes an email or a daily message. Some days, it feels like he is reading my mind or my email… Here is one of some of those days.

IBelieve God Wants You to know

5/28/12

On this day of your life, Denise, I believe God wants you to know…

…that how bad things may look right now means nothing.

It’s how good you know they can look with God’s help that counts. 

Life has a habit of changing itself completely around in 24 hours. Heck, in 24 minutes sometimes.

Don’t you dare give up on Tomorrow because of the way things look Today. Don’t even think about it…

Love, Your Friend….

***Some day- maybe I will let Neale know how much his words inspired me to just keep going that day… that moment. Maybe someday I can share this with him…. ***

Paul update 5/29/12

Hello Everyone,

Tuesday AM


Well… Paul got transferred to Detroit on Friday and we have been here since. They are going to do a procedure, possibly today. It’s considered an elective surgery at this point because he is not actively bleeding and it’s not an emergency… So we wait. He is in good spirits, no pain, and is eating well…


He asks a lot of questions, like what happens if? Or- you know everyone has always said when you let them do surgery… It always spreads. I can see his fear. I can feel his fear.

Here’s what they are doing. It’s a tube with a camera and a hot knife. They are going through his urethra into his bladder and are going to see what’s going on. They did a cat scan in Saginaw and believe there is a tumor in his bladder. They will remove it if they can and use the hot knife to cauterize it and minimize the bleeding.


So… The good news is the Urologist said that is a misconception that when oxygen hits a tumor it grows. He also assured us they are not cutting him open and it’s very safe.

We actually do not know if they will do the surgery today or tomorrow. He is on a No food or water order… So we hope he finds something out soon.

We have had lots of visitors since we have been here.  It’s been really nice. I have been able to stay right here with him. He actually is in a much better mood since they got him here. He feels that people are doing the right things to help him… He doesn’t feel like he is in limbo any longer.

He also feels good about the direction they are heading. He also has opened up about what he is feeling and has been quite talkative… One of the reasons I have not updated! I am enjoying spending some time with my husband. His outlook is better and he is less agitated. Hopefully it’s the steroids controlling the swelling and clearing up his confusion. I also feel like because he isn’t alone… it’s been easier on him. (Even when I was driving back and forth to Saginaw… he was edgy… this seems different.)

We have talked a lot about his first treatments in Ann Arbor, how dark it was. How alone he felt. How sick he was. I reminded him that he has me beside him now, its different… I can help.


His girls came and we had a very nice conversation about his wishes and it was very healing. It was almost a relief to discuss “What happens next… And what do we do if?” He was able to tell them what kind of a funeral service he wanted. He talked to them about personal possessions… and cleared away any confusion that any of us had. He was quite specific about his wishes. 

He and I spoke at length about what we wanted to do next. He is definitely retiring, and we will have an auction to clear out the pole building and get rid of all the extra stuff that we have both accumulated.

I am going to take the next few months off work, to get through this and to be by his side. I am not saying that I am quitting my job- my bosses have things covered and I am not going to worry about it for now. They said whenever I am ready… I can come back. I will stop in and help to keep things rolling… but I won’t be there as much… I just need to focus on this for now.

We have even talked about selling the Dighton house and moving back to the Lake City house. It would just be a relief for him to know that things are all in order…Sometimes our fear of these conversations is actually worse than the feelings that arise once the subject is broached. We have had many conversations over the past few days… it’s not the most private place either… a few times nurses would pop in and they were amazed that we were able to sit and talk about such serious things… and everyone always says- But- he’s too young… he doesn’t even look sick.

Tuesday PM

Oh man… the day that started out so good… ended with some frustration. He finally got some answers around11:00- a nurse came in and said she wanted to take his vitals, get an IV going… remove his catheter and the Urologist would be in between noon and 1:00 to speak to us. They were not doing the surgery- and they ordered achest X-ray, an EKG and some fluids. They said it may be a few weeks before they could get him in. We weren’t happy. He had been on no foods or liquids…all psyched up for the surgery… and then nothing. They brought in his lunch tray around noon…


The floor MD’s came by… and discussed the options and possible reasons for the delay. I told him that I felt that because he was stage four- that nobody wanted to help him. I couldn’t hold back the tears of frustration… and I didn’t care. I also told him it sucked to be pushed to the end of the line.. He said he would push as much as he could for them to do the procedure… but it was unlikely that it would be this week.

The Urologist came by around 2:30… we had a very informative talk. The first man was an Intern… the second was the head honcho. They assured us that nobody was pushing anyone to the end of the line. He said there wasn’t a line. He said there was such limited surgical time allotted for them.. that it really was a first come first serve sort of operation. He also explained in detail that there was no concern at the present. He also said he would be really shocked if this was the same type of cancer. (News to us) He feels it’s something else. He said they will know more once they get in there and take a look and a biopsy. If they are able… they will take the entire tumor.

He is scheduled for the procedure on June 14th- here in Detroit. He will have to come for some tests before… and they will let us know a time as the day gets closer.

We are okay… it’s not urgent  and we understand. If… and this is an IF…he bleeds again- we are going to have to go back to Saginaw and start all over. Even if he was bleeding when he got here- they probably wouldn’t be able to do the procedure. Isn’t that just something?? I can’t believe that they are so limited… it’s not right. We are very appreciative of the care he has been given by the VA system and we are learning how the system works. It’s weird…

He had an amazing Urologist in Saginaw…I actually called him today and asked him some questions. He gave us some good advice and even followed up with a phone call later in the day. It’s hard to remain positive… but I refuse to let people continue to knock the wind out of our sails. We will keep moving forward. We will keep believing. There is always hope.

The Oncology Dr. came by here today too… He explained a few more things about Chemo that we didn’t understand. Even tho it isn’t a cure. Even tho it is just palliative… it may help to give him more time. So.. again- we will keep all options open.

We have met some amazing care givers and some people who really are good at their jobs… it’s fun to chat and pass the time. It’s awesome that complete strangers want to know what’s going on…and ask if they can pray for us.

I am excited that he gets to watch his show in about 40 minutes… The Hatfield’s and McCoy’s is on at 9:00- it’s the second one in a three part series… he has been waiting for this for weeks.(Although he hasn’t been able to keep his eyes open much today… sort of tired… I told him to rest… his body is healing.)

Okay- everyone- keep the faith. Keep the love coming…

Peace and Love,

Denise

*** Another email from Neale…

I Believe God Wants You To Know…

 5/31/12

On this day of your life, Denise, I believe God wants you to know

…that illness is not a sign of spiritualweakness, but of … spiritual strength.

When we fall ill there are some who will say,”Why did you create that for yourself?” They might convince you to see it as a sign of spiritual weakness or failure.

It is not. It is a sign of spiritual strength.

All challenges are a sign of spiritual strength, and of the readiness of the Soul to move on;

to evolve even further.

Love, Your Friend….

***

It blew my mind some days when I read these- with the millions of people that are on his list… they were so personal. They were meant just for me. God is awesome….

I Believe God Wants You to Know…

***

6/1/12

On this day of your life, Denise, I believe God wants you to know…

…that progress is not measured in miles, it is measured in inches.

Do not wonder why things are “taking so long.” In fact, everything is rolling out exactly as it needs to, using not a minute more than Perfection requires.

Rest easy and be at peace. Life is working its magic even as you take your very next breath.

There. See? You could almost feel thePerfection,

couldn’t you?

Love, Your Friend….

***

Chapter 26


***If you are just joining the blog, you may want to read a few of the previous posts to catch up,  this is a healing journey. Its my story, as I walked along side of my husband Paul during his battle with cancer. We began this journey in 2011- these are the emails that I used to keep all of our friends and family in the loop. ***

Paul Update 5.23.12

May 23,2012 10:14 PM

Hello Everyone,

I am just home from Saginaw and Paul is still there. He probably won’t be coming home for a few more days… I hope… but there isn’t much change. In fact- things are different- but not better. There have been better test results… but then other things appear.

I have noticed he has been having more unclear moments, he has repeated himself, insists he is telling you what he “knows” is the situation and then in a few moments later… will say- “Wow… I don’t know what I am talking about.” Those moments are rare… most of the time he insists he knows.

He is also popping up with some off the wall stuff that isn’t a reality. It’s hard to know if he understands what’s happening… or if he is in denial. He will tell the Dr.’s what he thinks- they want to hear.

The Urologist came by today to specifically look at his urine. Because he was telling the nurse that it was normal… and it’s not. There is still blood. The Dr. came and said it now appears to be old blood… but it’s not been clear since he has been there.

The changes are this: He no longer has a catheter, and he had another blood transfusion- two more pints. His hemoglobin levels are back and forth… but are currently above 8. His platelets were normal- but have dropped again. He is still taking pain meds… and is still not urinating without difficulty. Here’s one of those situations where reality and his “knowing” don’t match… You can hear him in the bathroom trying to go… he is straining. He also has to jump up in a hurry and go to the restroom- because the urge comes on strong. Then he has just a small output. When they ask him- He says- It’s okay… and answers “Yes” he is going. (No mention of the straining… no mention of the little output or the instant urge and constant urge.) I am thinking he will need another catheter by tomorrow.

The other change is he no longer on the steroid… they weaned him off that gradually- and his last dose was late last week. Here’s my other concern… is there now brain swelling again? Because his behavior suggests there may be. I let his nurse know what I suspected- they also noticed a few times of him being confused- so they ordered a cat scan. The results weren’t in when I left tonight.

I spoke to a Nurse Practitioner, who was updating me for the Urologists… Her feeling is that there isn’t much more that can be done at this point. I am sorry… but I would like them to try something to find out something… the guessing game is enough to drive me nuts.

She said they have spoken to Ann Arbor- and basically they are of the same opinion…. UGH!! I am so frustrated. I am going to email Dr. XXXX, once I am done with this update… I need them to know where things stand. I told the lady that I felt that they weren’t trying enough… that if they could get this under control… he may have a few more years…  this doesn’t have to be his demise.

It seems that they feel that he is terminal,so they aren’t doing everything to get things back on track. I understand that it’s not wise to do certain procedures… I get that… but let’s try something. The irrigation didn’t work. And honestly- I think he is still bleeding. I don’t think it’s just old blood. If it were old blood- then it would have eventually stopped with the irrigation- right?? He would’ve eventually had a clear catheter bag.

Okay… so- all of that being said. I finally hit a wall. It was rough. His mood has been swinging and his fuse is short. Some days are just tougher than others. I got there late on Monday… and he was miffed. It didn’t get better. He insisted he knew the answers to what was going on and was insulted that I didn’t believe him.

His sister and brother in law came… and he started in again… I had to take a time out. I let them visit for a bit… came back- and it hadn’t changed. I guess when I left- he started in on Laura. I left early… I also had a mighty good cry on the way home and decided to not go back on Tuesday. I needed a break and to be refueled. I was exhausted. I can’t be everything to everyone… this just isn’t working.

I had lunch with a great friend- she helped me to redefine my role.

She helped me to set some new boundaries and be safe again. She is amazing… I am forever grateful. I hope everyone has a friend like this… someone who believes in you- unconditionally. Someone who will listen to you cry… whine… snot and mascara… and tell you how beautiful you are.

Sometimes Grace and Peace aren’t ushered in on the wings of a dove… sometimes it skips in over coffee with a few f-bombs. I love you Kitty.

Someday I want to be that friend to someone else in need… She is a great listener. When I doubt if I am able to do the next right thing- she gives me permission to do the best I can. When I doubt if I am capable of making sound choices… she told me I have good character and she believes in me. When I want to be mad… she says it’s okay.

When it was all said and done… I was okay again. I didn’t feel as fragmented… not as pulled. I was able to get re-grounded and re-centered and was ready to go back today.

She reminded me of some important things- Pray and hope for the best… prepare for the worse… and to lose my expectations for each day. Basically- keep living in the day… face it as it comes- and know that I will have what it takes to get thru it.

Jennifer, the babies and Nancy came today- This brightened his mood… then Hailey and Cody visited… and brought me dinner! The stinkin cafeteria closes at 3:30 and the grill closes at 3:00… that’s twice now that I have missed it! (Since I had popcorn for lunch… I didn’t think it was a good idea to have Frito’s for dinner.)

I want to thank you all again for your love and support- the cards- the prayers- the hugs… even the sweaty ones at the gym… the money- gas cards- for mowing the lawn, handling personal paperwork… covering his business, working for me… and the emails ofencouragement. Again- I am not sure if you all realize there are more than100 of you… and just one of me. So- please don’t ask questions or ask me torespond… I just can’t. I may not update as often as you’d like… but it’sthe best I can do… and my friend Kitty says that’s okay! 🙂

Love and Peace,

Denise

Paul update 5.25.12

May 25,2012

Hello Everyone,

Well I finally felt like we got some answers yesterday at the Saginaw VA. The original lead Urologist had been gone-to a conference since the second day Paul was admitted last week. He was the one who said he didn’t want him discharged before the catheter was running clear. He said if someone tried to release him… that he was supposed to threaten to call his Congressman. He returned yesterday and saw Paul and gotthe ball back rolling.

Late in the afternoon- he met with Dr XXX and he called the Urology department in Ann Arbor and told a few people of Paul’s case. He also said several times- I need help. He ordered an MRI to be done in Ann Arbor- STAT. They are waiting to transport him to Ann Arbor to do the MRI on his bladder/pelvic area. He will also be admitted there- as soon as they have a bed available.

YEAH!! I cannot begin to tell you how much relief this is… We had a rough morning yesterday. When I got there- there was a Dr. and the Nurse Practitioner, that he doesn’t really like- having a conversation about his status and his care. This is what it felt like to me… they were trying to release him… or convince him of something. Not sure what that was… because- I immediately stopped the conversation and led it back to his present condition and the blood in his urine. She went as far as suggesting that we take him out of Saginaw and just show up in Ann Arbor at the emergency room- and they would have to take him. She kept talking about his “stage four” status… and his adamant decision about not doing ANYMORE treatment. I told her this was not the case. He wanted treatments… just not sure about chemo and radiation.

At this point- we needed to re-visit those decisions, now that he was symptomatic. But- we needed time to process things and to make an educated decision. She kept telling me- he was adamant! I told her it was based on information two weeks ago… not today…. My gut was telling me that I didn’t like the two ladies… but I wasn’t being rude. I listened- then when they left- I cornered the one in the hall and gave her a piece of my mind.

I told her that he was MY HUSBAND- and I had a vested f’ing interest in his care. It was my job- as his wife- to make sure he got the best care. To make sure he understood all of his options and that she was not helping things by asking him questions- when he was not thinking clearly and was drugged up. She said he was very competent and that any judge would deem him competent… that wasn’t my point… but I let it go.

I made sure that he made all of his wishes clear as far as his treatment was concerned. He has also signed an Advanced Directive- stating his wishes with a social worker. He does want to live. He does want to try everything possible… even if that means chemo. When he decided no against the chemo… he had no symptoms. The Dr. kept saying- even if it makes you really really sick and your last days will be spent really sick? UGH…. I can’t begin to tell you how mad I was. Shut up… he doesn’t need you in his face telling him what he will be facing… BECAUSE YOU don’t know. Nobody does.

SO- the good news is he is getting moved to Ann Arbor as soon as they have a bed. He got the catheter back last night to give his bladder a rest… he was going- but not completely emptying it. They started the irrigation back up… and the bleeding is much much less… just pink now… not really dark… might just be old blood clearing itself out. For those who ask- then why not just send him home now? Because the bleeding could start back up at any minute- because of his condition. Once it begins… they really do need to figure out why it was bleeding and the source.

The other good news is they started him back on the steroid for brain swelling- and he seems to be talking sense and is less confused. He is now having vision problems tho.. seems to want to wear his reading glasses all the time.. said he has problems focusing…  But hey- with that cute- cue ball and a stylish pair of glasses… that is the least of my concerns.

I am heading to the gym for a few hours-to do some paperwork and let the carpet cleaners in… then I will see if he has moved yet- and head out to be with my hubby.

Keep praying- keep believing… he will get better. Just wait and see. The cancer might eventually take him… but that won’t be soon… he has time… we have time.

Bless you all- Happy Memorial Day Weekend- Thank a Veteran… I am going to go be with mine.

Peace and Love,

Denise

Chapter 25

***If you are just joining the blog, you may want to read a few of the previous posts to catch up,  this is a healing journey. Its my story, as I walked along side of my husband Paul during his battle with cancer. We began this journey in 2011- these are the emails that I used to keep all of our friends and family in the loop. ***

Paul Update 5.18.12

Hello everyone,

Thursday

Today was one of those emotional days… The kind I hate. It’s difficult to feel so helpless. I am here… And can’t do anything. I am here to just be here. He just looked up at me a few minutes ago and said “Sorry honey- that you have to just sit here with me…” I told him there was nowhere else I’d rather be.

The bleeding has not stopped in his bladder. That’s where they are assuming its coming from… Who knows? A Dr. from the palliative care came by today and discussed some things with me.


I have a copy of the Pet Scan that showed where the tumors are located… Evidently, because I cannot read the medical report correctly… I had it wrong… There is a tumor in the kidney area. The wording described a general abdominal area mass and they told me it could cause the blood in any of his organs from the area.


I spoke to the Urologist when I first arrived this morning, he said the radiation is not the cause. He would’ve had to have had radiation in this area and it wouldn’t be seen as a problem for many years later. It is the cancer causing the bleeding.

Friday Morning

He has rested very nicely since he has been in Saginaw. On Weds night he woke up and had some major spasms and the catheter was leaking. He said he didn’t know what to do. He just laid there and finally after a long while- buzzed the nurse.

How horrible… it breaks my heart to know this. He was confused and didn’t know if it was something he had done or if it was his fault. The nurse was super kind, she changed his bedding and got him re-settled. It happened again later in the day on Thursday too. It seems that when there are quite a few bladder spasms it creates an over flow… hence the leakage and the pain.

They started him on new meds for the spasms just before I left last night.

He is in good spirits and his pain in manageable. He is eating good- not great- but at least eating… I have had so many thoughts going through my mind since yesterday. There needs to be a healing center that provides this type of care. Where a person can go and get organic meals, homeopathic care and a fresh start. It would be wonderful to just know I could take him to such a place for three weeks to get on track and then bring him home.

Part of this healthy plan at home will be clean eating. I am not sure if everyone knows what I am talking about… but clean eating is nothing processed or refined. Just whole foods. No meats, no dairy or meat-by-products and no sugars. It’s about giving the body what it-needs- and nothing else. It’s about balance. Do you know how hard that is to make that change? If we could go to a place that prepared his meals and coached us on how to continue this at home… if he had a place where we could do spiritual healing, massage, aromatherapy, exercise and healthy meals…. he could beat this stinking disease.

I am just worried that it’s too late. That is my fear. I know I must not stay in, the fear. I will move from this today. When I stay- it wins.

I can’t help it… I am human. I get caught up in my emotions and my brain aches… my heart hurts… my eyes burn.

The days are starting to run into each other again… I am repeating myself so much that I get confused about who knows what and if I have shared the important stuff with everyone… The Important Stuff?  Wow… isn’t that sad? It’s all important stuff. All of it. Each breathe… each day… I just need him to get strong enough to come home.

The Palliative Dr. gave me some information yesterday, it cleared things up in my mind. They are hoping the bleeding stops with the flushing of his bladder. If it does- there are no guarantees that it won’t begin again. They hope it just stops. They are not even sure where it is bleeding from, exactly.

This is their only option- here- at this hospital. If it doesn’t stop, they will transfer him to Ann Arbor.

As of Weds when he was in the ER- there wasn’t a bed available in Ann Arbor. They are not equipped to do any procedures or to do anymore tests with his bladder or his urethra here in Saginaw. They will be able to make him comfortable and treat his symptoms. IE: Palliative Care.

They will probably move him later today if the bleeding doesn’t stop. I am thinking this, because in the Saginaw VA, there is only one DR. in the entire hospital, all weekend. No specialists… no teams… just one Dr., who rotates all floors and basically- makes no decisions. I only say this because we learned this the last time he got stuck in Saginaw for a weekend… nobody wanted to take responsibility for a decision… so they just kept him there. Nobody wanted to risk anything… so they wouldn’t do anything. I know this is different. He is bleeding… so if it doesn’t stop- they will have to do something. Oh… almost forgot. They gave him two bags of blood yesterday.

His hemoglobin levels were 6.8 and Iwas told that normal was 12. If it goes below 10 they get concerned and want to do transfusions. I am not sure what his levels were before I left- after they gave the blood. They have to wait a full hour before they re-test from the lab.

I am going to the gym for a few hours this morning- to make sure things are okay… and will head back to Saginaw by noon. I am super thankful for my new car… my mileage is super and the car is so comfortable! I think I would’ve opted to stay in Saginaw if I was still driving the big red bus…

Be blessed everyone- and thank you so much for the good thoughts and prayers. God hears us… I am proof. If I didn’t have each of you looking out for me… I would be a basket case by now.

As it is… I am okay. Seriously… I am okay. I have moments… but they pass. I can’t afford to dwell in the negative thoughts or the anger- so if we talk on the phone… please limit the questions and if I sound like I am having a pity party- please help me to get back on track.

Peace and Love,

Denise

PaulUpdate 05.20.12

2012 at10:48 PM

May 20,2012

Hello Everyone,

Paul is still in the Saginaw VA. They are trying to control the bleeding from his bladder- or wherever it is coming from… He has had a few improvements since the last update- his hemoglobin levels came up a day after his transfusion. (But then dipped again today) And the most important change is his platelets are up to normal now.

The Urologist told me on Saturday that because his platelets were so low… he could be bleeding from any area. Normal range is 130,000-200,000. His were 119,000- but now have risen to 139,000. The problem when they are low is that you can bleed from anywhere. Skin, organs, anywhere- you are just really susceptible to bleeding. It’s not uncommon for this type of bleeding. I asked him what the plan was?

I felt that he was just sitting here in a hospital bed- all doped up… and there wasn’t a plan. I felt he was in limbo. He acted a little surprised at my candid statement… but he answered my questions and I thanked him.

It was the most information that I had gotten from them since he was admitted. He said that they had to take certain steps. Each step depended on the last one. He was trying to monitor the bleeding- his hemoglobin and his platelets. While also making sure he was comfortable and not in pain. He needed his platelets to come up- before they could administer meds to stop the bleeding. He has been taking stuff for the spasms- but they are still happening. He is also still passing blood and clots.

They have irrigated for days- took him off- then hooked him back up again. They stopped it again earlier today-thinking it may help improve his hemoglobin levels- and they will test his blood tomorrow to see what his levels are. When they unhooked it- he had a few spasms- felt the need to relieve himself… but couldn’t let it release… the nurse came in and irrigated the catheter and he passed about ten good sized clots. He also was given a new form of morphine- one that is timed release… maybe he will have a certain level of comfort most all day now… if not- he can also ask for a an I.V. dose too.

That’s about it with the news… he has had a few visitors and that has made a world of difference in his mood. Although he is reluctant to answer questions… okay- I’ll be real… he gets Ornery when people ask questions- even towards me.

Stephanie and Chris Burke came – thanks guys… he said when you left… wow- that was really nice of them to come seeme. (What was really nice- was it was just like old times… normal conversation.. not much talk about the tubes and junk going on.) Next came Jennifer and Andrew with the new baby Lydia! She is such a little peanut… she will grow to melt her Bampa’s heart too… I can already see it in his eyes.

Today he had my mom and step dad, my sister Kim and my niece Jalyn… they brought him some good food– today was a bad food day for him. Nothing was going down right… it all felt stuck and not worth chewing… and then came Mellissa and Karen- her bf Mike’s mom…it was a nice day.

The company breaks things up for him…it makes it more tolerable. It’s a nice diversion. I will say this though- an hour to an hour and a half… is about all he can do… when people leave- he is-spent. It’s hard because everyone drives so far to see him… but please know-he sleeps a lot right now to heal his body and to fight the disease.

Oh- and he got to show off his new cueball look- so far… it’s a hit! Everyone loves the shape of his head… and he does look pretty dang good! 🙂

The Dr. said he would probably be here for at least a couple of more days… he originally said he needed the bleeding to stop and run clean for a period of time..  that has yet to happen… so I am sure he will be here until at least Tuesday. Hopefully he can come home for the weekend.

He is not fighting it this time. When he was in Ann Arbor, he just didn’t want to be there… while he has been here… he has been a pretty good patient. His nurses all love him. Broke my heart last night- Sis, his night nurse asked me in the hall… “Does he know how sick he is? I just read his chart… and it’s just not fair- he is too young.” I told her he was aware of how sick he was and that he understood what was going on.

There is also a young male nurse- who is from West Africa- his name is Mikula, and he has been great too. We shared with him our natural treatment plan and he also had a close friend who was just diagnosed and wanted the book for them. He said in his country they grow lemongrass- so I made him an essential oil spray with lemon grass and eucalyptus in it as a mosquito repellent. He loved it… I also brought him some chai tea…He is my new pal. He has borrowed my iPad and read my book- and we had a nice talk about natural healing remedies and how there needs to be more of a balance in Western medicine. We just treat the symptom in Western medicine, not the actual cause. We want to get him home to treat the cause… get rid of the cause.

Okay- it’s storming pretty good here in Dighton… I am going to brush my teeth and hit the bed…

Peace and Love,

Denise

(Will be going to the gym tomorrow morning and headed back to Saginaw in the afternoon. He is in room 2514 if anyone wants to go see him. Building 22- or the Community Living Center- around back of the main building.*Weiss Rd*)