Chapter 35

***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. *** Update 11.26.12 Hello Everyone, It’s been a bit since I have written an update… Not sure if it’s even appropriate at this point, but because so many people still ask- How are you doing? I thought I would write a little update. (My last post was from the UP in August.) I just got home this evening from WV, visiting Hailey and Cody and Bogey Chupp- for Thanksgiving. The trip was exactly what my soul needed. A nice trip to reflect and to be thankful. My life may not be what I feel it should be… But it’s mine, and I am thankful for it. I have awesome friends and family who have loved me though this… And, I am okay. I am gently reminded on a regular basis that I really am okay. I still feel like I am in a haze… I do still cry a lot… I am working on a routine that works for me… And most importantly, I am working on feeling everything that comes up. (I will explain more later on this process.) A friend reminded me just last week when I was talking to her about not sleeping well… and overall feeling poorly- she said- Denise, you lost your husband. (Four months ago today to be exact.) Give it some time… I guess- because I am not used to everything that keeps happening or coming up… I feel out of sorts. Still. All of these “firsts”. When I talk about people asking me how I am doing, I am not suggesting that it’s a bad thing. I appreciate the concern and the ear to talk things through. I was talking to Paul’s daughter a couple weeks ago and we touched on this… People ask me daily- sometimes ten to fifteen times a day- if I am okay? Again… it’s not a bad thing… it just is. It’s a way for me to process- talk- listen and to talk about my husband. I miss him terribly. It’s hard… but anything in life that is simply that good- should be hard, I suppose. The strange thing about the conversation with Jennifer, was that nobody asks her anymore. After her dad’s memorial… people just don’t talk ask how she is doing or about her dad. A few people have asked me if going back to work has helped? Dp they mean, does keeping busy help? Help with the process or the grief? The answer is no. Nothing makes it better. Nothing makes it feel any less. It’s always there. Always. It’s something that I have to go feel my way through. When a person attends a memorial, they witness grief. They experience sadness. They may even feel bad for the family for a day or two afterward. When a family loses someone, it’s a hole. A gaping hole carved into the very fabric that held them together. It’s like a bad dream… with each new day as a reminder that it isn’t a dream. I have started my book. Most of you may remember that when Paul first got sick, there were emails that went out and I asked everyone to pray and to send love. I believe love is a universal language. It doesn’tconflict with anyones spiritual principles or religion and I feel that is where God lives. In. The. Love. I remember a particular conversation with a friend, he was so shook up when he found out about the cancer… He went to church and he prayed. He asked me what else could he do for us? He is not a religious man, he just felt like he needed to ask God to help, but didn’t know how. He asked me to help him understand. (You don’t know how much your question and your concern impacted me… thank you John Caskey.) I asked him to just send love. When someone doesn’t have a particular faith or a deep relationship with God… Praying seems foreign. We almost feel hypocritical showing up and asking for anything, or undeserving. I know it may come easy to some of us…but he- struggled, and wanted to know how he should be praying or what he should be asking for? I told him to concentrate on a beam of light from God (From heaven above or Papa daddy, as he now calls him) to Paul… and in that beam… to send Love. So… that will be the name of my book. “Just Send Love”. Thanks to Hailey and Cody for the invite to Thanksgiving. Thank you for letting me hog your dog for five days. (Bogey is my granddog, he sensed my grief and didn’t leave my side. He slept with me each night.) They surprised me with a Spa day for my birthday! It was perfect! Thank You to my friend Karen, for coming to watch Cody’s game… it’s nice to travel over 500 miles from home and have a friend in a neighboring town come to visit and hang out. I am in awe of the kindness that people have shown. Truly amazes me each and every day. People have also asked me if it’s getting harder because of the Holidays? I don’t know… it just is. This time of the year was always hard for Paul… he lost his son nine years ago in a car accident- Paul Jr., was his bestfriend. They did everything together. So in our house, every October, things got different. Hunting season brought back memories… then the accident Anniversary… then his son’s birthday… Thanksgiving… his birthday… Christmas and then New Years. So- I am sure it will all hit me soon… but right now- I just miss that… I miss the unusual feeling that had become my norm. I used to call it the “weird”. I had never met his son. But- it’s been my norm for the past few years… almost like the change of the seasons… so- I miss him- missing his son. I find a lot of strength- knowing they are together… but here in my house… I miss that. Please send me an email- and let me know if you’d like to be removed from the email list… I really won’t take it personally… I love each of you- thanks again. Peace and Love, Denise ***This is where the email updates ended. On my computer, I have a journal… along with an unposted email update. I got scared because of a response from someone to the last email… and I didn’t send it. Here it is… along with some Journaling that I did to stay connected to the healing process. Some of these are before the last email update… Some are afterward. This is what it took and the path that I traveled- to get to today. *** 1/22/13 Hello Everyone, Just wanted to share a few thoughts and to let everyone know that I did indeed- survive the Holidays… I was talking to a friend- in order to sort through some feelings. Some old hurts seem to re-surface from time to time that need to be healed…also I always try to check my motives to find out my part in any uncomfortable situation. And… there have been a few recently. Today was no different. What she helped me realize, is that when we deal with the loss of a spouse and the journey through the cancer process…that we suffer from PTSD in some aspects. How could I forget this or not know this? I was with a friend a few weeks ago who was diagnosed with cancer and spent a few hours in the Oncology ward at Spectrum Health.  Since then… anger and shortness seem to be my new friend. Anyone who knows me- knows … this is not who I want to be. This is not who I strive to be… so it’s uncomfortable. My friend had a tumor removed from her uterus the size of a head of lettuce and two smaller ones in her stomach and intestines… Just walking around the hospital gave me a sense of peace, de-ja-vu, and anxiety all at once. Watching woman walk the halls with patches of hair gone… talking about their children. Listening to the fear in their voices. Watching family members with red noses and swollen eyes walk into the elevator…. Damn it… I hate what this does to families. (This friend passed since this post… RIP Kristin C) Okay- so back to my Holiday’s… I survived. It wasn’t easy- but it was okay. It’s all okay… until someone asks me if I miss my husband? Umm… yes… like my left arm. *** That was the last update- but it was never finished- and it was never sent. I will explain why and finish some thoughts now. During the first six months after Paul’s death- I had moved back into my little house, gone back to work and started attending meetings again. I got through my birthday, the Holidays then jumped into the new year. All firsts… and anyone who knows the healing process, knows that these moments stick out. There were times when I honestly felt it was all too much. I went back to work in Sept 2012. It was overwhelming. You may remember, I was the manager of a gym with over 500 members. People would come up to me daily to see how I was doing. Dozens of times a day. People would ask me a question about Paul, about cancer, about the VA hospital, about me, about his girls… As I mentioned above, I had spoken to Paul’s daughter Jennifer, shortly after he died and realized my journey was different than hers. She had lost her dad… and a few weeks later- nobody asked her how she was. This was an uncomfortable phase with us. We avoided each other. Things got sticky. (I won’t go into details because it’s not important… just know this- it was all necessary to bring me too where I am today.) The difference between my grieving process and hers was that each and every day for many months- someone would ask me about my journey… She went through all of those firsts… and nobody asked how it felt to her. I had invited so many people into my world through the updates and being so candid with my feelings- people felt nothing was off limits. Friends would openly discuss my grief and allow me to cry and not interrupt. It was so magical. It was surreal. A friend of mine was upset with me because I wasn’t available to her during a time of need. She responded back to my November update with some painful words. It made me realize when I started the Jan update… that I seemed sort of needy. Or at least that is what I was feeling at the time. Attention seeking? Important? Not sure…. I say these words to not diminish the process or to place blame on anyone. I am merely explaining why I never sent or finished my last update. I am not someone who enjoys the spotlight. I am open and try to be transparent- but by continuing to do the email updates… meant that I felt that I had something to say- and that people would want to hear it? Again… the voice in my head said- Stop it Denise… it’s time to move on. And… that’s what I did. I stopped writing the updates. They were supposed to be about Paul. They were started to update everyone on his condition. They turned into a journal of my feelings and my healing. They were intended for one thing- and ended up being another. It’s okay… I look back at it all now and know it’s all as it should be. So here are a few of the things that stuck out in the process over the next few years… Remember, they jump around with dates. I didn’t update this information publicly. *** Saturday Sept 1,2012 I spent all day yesterday with my mom at Munson Hospital… boy did that bring back some painful memories. Good- yet painful. My heart aches with the loss… as it is healing. I have decided to continue to write as the time allows or the thoughts come forward…hoping to heal. My biggest fear is fear. The thought of being trapped, without options… fear can be so overwhelming. It is the one thing that I am learning more about as I go along. My husband taught me about strength. He taught me thru his illness how to be strong. He taught me with his Marine blood- how to push on and not to get trapped. I love, that he showed me how to be strong. I love that he showed me how to love. I had a massage the other day in Traverse City. When I showed up at the massage office, I asked her to limit the conversation.  I told her that I really just wanted to enjoy the massage and sort of meditate. (Insert smirk here…) I wanted-something different. I wanted an escape. It was funny… AND- not at all what I had anticipated. Not at all- what I thought- I wanted… But exactly what I needed. She was very kind and talented therapist. She did trigger point therapy and Asian body work. She was also a Reiki Practitioner, who had learned from the same teacher that I did. We had an immediate connection. I told her why I wanted what I wanted. She knew I was a massage therapist and that I had lost my husband. She began asking me questions about pressure… then the conversation started rolling about our Reiki Master Teacher- and the blessings of knowing spiritual healing and spiritual people. I told her about how Paul and I had met. I told her about his illness and how I was processing as I went along. She asked about the things I needed to heal. I told her it was anger and my fear. I told her about my book- the reasons I didn’t feel I could write right now… and that I had gotten advice and words of wisdom showing me that if I write my truth- Not wanting to deliberately be harmful-  if someone took offense- then it was their problem and insecurities not mine. If my intent was Not to cause harm… and it did- because of what the other person was working on… then it was their issue- not mine. It was the longest massage I have ever had… our conversation flowed. (Remember that I initially told her I didn’t want conversation… lol) She asked me what I had learned from Paul. She asked me what I had taught Paul. I had to dig deep into painful memories and I cried. I told her that Paul had taught me how to be strong when I didn’t want to be. He was a Marine… he taught me the real meaning of loyalty and showed me the rewards of standing up for what you want. I taught him how to relax. He was a work-a-holic who didn’t know how to separate his work from who he was. I taught him how to enjoy a slug day, and we both taught each other how to love again. During the massage, I learned to accept what God wanted me to have- as he wanted me to have it… not as I felt, that I- needed it. I learned that God will give me what I need, as long as I am open to receive it. She also told me this- and I will never forget it. She said, “Denise, I can’t promise you when it will happen… But I promise you that it will… You are like a buoy floating in the middle of the ocean, just bobbing around without any sense of direction. You don’t know why or what you are doing- but the universe and the people who love you- are supporting you and holding you together in prayer and in love. I don’t know when it will happen… but it will- Anytime someone experiences this level of grief, there will be a huge growth spurt. Huge. At some point, you will be catapulted forward at such a rate of speed… you won’t know what hit you. It’s a gift.”  (This sounded familiar to me… I knew it to be true… but didn’t know why.) Thank You Amy Yee… Namaste. Now- back to my mom’s surgery. My mom had total ankle-replacement surgery and I spent the morning and day with my step dad and early evening with my sisters and nieces. I went to the hospital at 7:00 am and didn’t leave until late. Here’s how it played out…Phil (my step dad) and I were there together. After the surgery- my mom’s Surgeon came out and took us into a room to go over the details. He was directing his conversation to Phil (this is the first time I had met him…) He was going over what to expect, as far as pain. Immediately, I felt myself go into “caregiver mode”. I interrupted and asked him if he knew of my mom’s intolerance to a certain pain medication? He said- Yes… they had discussed it. He continued his conversation and at one point- he said something like- “As we discussed earlier, about her therapy and her healing…” I interrupted again. I said- “Excuse me, but could you please repeat that previous conversation? I was not privy to it- and would like to know what the outcome will look like…” I swear to God – he rolled his eyes at me. He did answer my question and then proceeded with his conversation- to Phil. Okay- here’s the magic… In that instant- right at that very moment… I knew what it was like to be the daughter. During Paul’s illness- I kept a tablet with me at all times. I knew all of the details of every procedure and at times even got the Doctors on the right page. I had all the details, and if you needed to know something- just ask me- not the Dr.’s.  In that instant… I knew what it felt like to be Jennifer and Mellissa. (Paul’s daughters.) They had every right to ask who ever and whatever they wanted. That was their dad. They had every right to act or do whatever they needed to do… to be okay. In my controlling frame of mind… I thought I knew what was best. I thought I knew how they should behave or act and when they should be there… They had every right to be whoever they wanted to be. That was their dad. Just like I had every right to-ask those questions to that surgeon. That was MY mom. Here is the beauty of this…Because I want to heal the anger- God gives me these types of awareness’s. That night as we were all sitting in my mom’s hopsital room… talking and going over the details of her surgery… it all hit me again. You see- I was hurt. I was angry. This was about two months after his death and I was talking to my sisters about my feelings. I was talking about Paul’s daughters- how I felt abandoned- but wasn’t willing to reach out to them. Here’s the real deal… I am going to be honest about this. My communication with his daughter’s had pretty much stopped after the memorial. We had a few emails and a few struggles with “stuff” but it wasn’t at all what I thought it should or would be like. We held Paul’s hand on his death bed and promised to look out for each other. And then… I didn’t see them.  I was throwing myself a pity party about the hospital journey and about why they weren’t helping me. I was sad because I felt like I was doing it all alone… I felt like his family just left it all up to me. I had told them how I wanted it… even went as far as to-say- this is how it’s going to be… then I was pissed that they let me do it. I was hurt. I was angry. I was feeling a lot of things… and they were not pretty. All necessary but not pretty. As I discussed these things with my sisters, I realized this was one of those times- when I could either rally people into my corner and allow them to decorate that pity party with me- or I could see what God- was really wanting to show me. My family is wonderful. They were willing to co-sign anything that I threw out there… after all- I was hurting. I was a mess. They love me. They validated me and made me feel justified in my anger. They did what I needed them to do. Stand with me in my corner. Stand beside me. I no longer felt alone. But I also- didn’t feel good. What the hell? Really? I finally got to play it all out and got everyone to see why I was so mad and hurt… and… I didn’t like it. The next day- I sat down and wrote an email and apologized to Paul’s girls. I wrote an email that said I was sorry for being so controlling and judgmental and until that very moment wasn’t able- or willing, to see what I was doing. Here’s another thing I know because of being in recovery…  Making amends isn’t to ask for forgiveness. It’s to apologize for your behavior and to cleanup where you have wronged. As soon as I was willing to see this- the anger started to subside. I saw that I had a part in all of it. I had set the pace and even dictated the outcome… I apologized and I set the wheels in motion to heal. Today is 01.06.13 I am settled into my house and work is getting better. I survived Christmas and realized that this is going to take a long time to heal. I didn’t understand completely or maybe I just couldn’t comprehend it in that moment…  I wasn’t prepared to lose my husband. I look back now with the help of these emails at my actions… I had completely immersed myself into the process and the fight. I have done some healing and have had lots of help. I see an Acupuncturist, a Spiritual Healer, a Chiropractor and a Massage Therapist. I won’t go into detail about what those appointments entail… let’s just say- I have to learn how to release Paul and his energy back to him and to God. And now from Neale… 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…. Neale Goodmorning- today is 2.24.13 It’s been a few months since I have written. Not sure why- I just know that I was not supposed to open up to the emotions until now. Sometimes, I can just feel things. Sometimes I just know when I am headed into a dark time and when I need to process stuff. I have had a time of that recently. The Holidays were rougher than I let on… It didn’t hit me until Christmas day when my step dad mentioned those we had lost and the loved ones left behind at the blessing before our meal. I couldn’t stop crying. It hit hard and I felt weak. Thought I was going to hyper-ventilate. I cried until I shook. I spent time with Hailey and Cody and my family. Paul’s girls didn’t come up- so I didn’t get to see them. I am going to talk about some painful things in this post-and it’s not meant to be a jab at anyone- they are just my feelings and the things that have come up. I have been feeling very angry and short with people. I have had an extreme sadness and jumped right into the “victim mode”. (As I look back now… I realize I was in a depressed state. I had tools, but I still felt very alone and sad.) I had a few things that popped up recently and immediately I took offense. How dare this person? Why wouldn’t they be thinking of my feelings? This is what I know about me… I have come too far to play the victim card. I am not saying that I am immune to it… I am just saying that I don’t like how I feel when I do it. Today I recognize those feelings and I don’t stay there. I also remember thinking shortly after his death, “DON’T THESE PEOPLE KNOW WHAT I AM GOING THROUGH?” I would walk into a store or a meeting and people would be laughing… I didn’t like it. Today when I am faced with feelings that I don’t like… in other people and in myself. It’s an opportunity to work on me. I am not always willing to see it like this- but I think God will keep bringing it back around until I do take a look at my behavior. Because at the end of the day- I can-only change me. Not other people. Sometimes it means I have to “own my own power”and stand up for what I feel is right. Other times- it’s to gently let go of painful stuff and just know it’s not my garbage. It’s extremely tough to know what is mine- and what is other people’s junk sometimes. This is why I am grateful for a program of recovery and loving friends who don’t validate my BS- but point out my defects and help me, to be a better person. Recently I had a situation that hurt deeply. I really felt like I was giving my all. It was five months after Paul’s death and I had resumed my work and was falling into habits. I started feeling overwhelmed. Almost toxic. I asked to have some relief from work. It wouldn’t have cost anyone money- but me. I was willing to pay for someone to relieve me. I asked my bosses at the gym if I could have my friend who covered during Paul’s illness come in to help. They said no. As a matter of fact, they infomred my that my job was about to change. They told me that the entire format would soon change and that I was going to be expected to do more. (They lived in another state- I ran the gym. I. Did. Everything.) I found myself quite emotional, I wasn’t being heard. I cried. I walked away from the conversation and stepped away to compose myself. About fifteen minutes later, my boss came into the kitchen and said- “I just asked (Husband), how long this stuff takes?” Really? How long “this stuff” takes? She didn’t understand grief, but her husband did. He had lost his first wife. She went into the back room and asked him, “How long does this stuff take?” Like, there is a formula for grief… insert this time, this tool or this emotion and you will be done. WRONG. The lesson came weeks later- when I realized that I didn’t need permission to do what was necessary to keep balance in my life. I was unhappy with the words that were exchanged and had given my power to people. I was relying on them for financial and emotional security. Hmm…. Step back. As I was explaining (okay… complaining) to a friend about the scenario… the answer came to me. I control my destiny, my income and my happiness. If I am looking to-other people for these things- I am giving my power to them. In that instant… I made a shift in my perception and took a new path. I also had an opportunity to look at what makes my heart happy. For a very long time I have been stuck. Probably since Paul’s illness began in 2011. I abandoned the Spiritual Healing Certification program and took-on a new role. I wouldn’t change any of it for the world. I am just saying that I am now realizing how completely immersed in this whole thing I have become. It had become my identity. Part of the problem recently has been that I felt my job was to grieve. I went right from caregiver to grieving widow…Who decides when it’s enough? Who decides when you can move on? Nobody can tell me the answer to these questions. Nobody can tell me that it’s time to move on. That answer has to be an individual one. It comes when I am ready. It comes when the time is right. If you’ve lost someone- then it will come when you’re ready too. Don’t rush it… don’t let other people push their reality on to you. It’s your life. Live it like you want. For me, it has come in as hope. I didn’t feel a lot of hope in the beginning. I haven’t felt many new feelings- until recently. This is what it feels like… It feels like old crumpled up and squished down, wrinkly, old wet sweater. Heavy, smelly, old wool sweater. It seems as if I have been weeding through bags and bags of old clothes. Realizing what fits and what I need to get rid of… the problem is- if I never look for new clothes… I am stuck with all of the old stuff. The heavy smelly old stuff. These new feelings have come in like fresh cotton sheets dtraight off the clothes line. They feel crisp and new. They feel like hope. I feel like I have hope. Maybe this is the beginning of that “catapult” the massage therapist spoke of? Hmmm….. Namaste everyone- until there is more… I sign off. Denise

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 23

1/20/12 Present Day.

Please stay tuned to the Blog for some major changes. I am committed to finishing this story- the one about my journey with Paul- and when I am done, I promise it will go fast… I am committing to something new. It’s time.

Thanks to everyone for your patience and for supporting my growth.

***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. ***

Mother’s Day 2012 Paul Update

Sun, May 13, 2012 at 9:35 PM

Hello Everyone- and Happy Mother’s Day to all the Mom’s~

We are on the third day of Paul’s new supplements and also introducing a few changes… Going to go slow… I can’t see taking everything away all at once. It’s not fair… he deserves some chocolate milk if he wants at this stage… in a few weeks- hopefully that will not be in our house.

A new eating plan and a plan to starve out the cancer. For those who don’t know… Cancer loves sugar. Loves it… so that will be the first thing that goes… sugar! Next will be processed foods, then we will be on a whole food diet. Paul has been taking a concoction of Flax oil and cottage cheese too- I know… cottage cheese is not “a clean food”… but the book I am reading says that mixed with the flax oil… it changes the makeup, and it doesn’t have any “dairy” left in it. I blend 1/3 C of Barlean’s flax oil with 2/3 C of cottage cheese. I also add about 4 plump strawberries and a handful of blueberries and three packets of Stevia. I have been blending the mixture and he eats that for lunch each day. It’s not bad tasting… it’s thick- like a yogurt would be but it’s filling- and lots of protein too. He still needs a few other supplements- but they didn’t have them in Cadillac- so my friend will pick them up from Oryana in TC.

He is happier since we have started these changes and it’s not poison! It’s a natural approach.

We also just ordered a new water purification system for the counter top… cancer cannot live in alkaline- and the new system will dispense water with that is ph balanced and alkaline between 8-10%.

Anyone who wants to know specifically what supplements… and more about the book- I’d be happy to share. I know there are skeptics… but at this point- what do we have to lose? He has decided against the chemo- and we have to try something to keep him alive. We have to become our own advocates. We must learn how to strengthen his immune system and help him fight.

This morning- he had some blood in his urine… it scared me… I asked him if he had any pain? “Nope.”

I asked him if anything hurt anywhere. “Nope.”

I also made sure he didn’t have a fever… and nothing else was happening… so- this is what I believe. It’s the ugly disease leaving his body. He has been drinking lots of water and is staying hydrated- he says he feels good. If it continues- he said he would call his Dr., but for now- he said he is okay.

If it’s the cancer tearing him up… he is happy- he is home… and we are good. But… like I said- we are believing it’s leaving. (It was just pink.. not bright… it’s a concern… but they would only run tests and say… hey- you have Cancer… duh… )

Well- I was in total denial about Paul losing all of his hair… right up until the moment that I shaved it off for him. It kept coming out in patches. He would leave chunks of hair everywhere… and it looked pretty bad all over his collar. The doctor said the radiation may make some of his hair fall out… and it did.

This morning before I left to spend a few hours with my family for Mother’s day… I buzzed him. When I got home- I shaved it and smoothed it all out! Then I treated him to a head massage… he said- “Man… I’ve got it pretty good- don’t I?” I just smiled. I wish that I had done it a few days ago… besides, he looks cute bald!

Tomorrow I am back to work… I am looking forward to it, but also, a bit scared and sad to leave his side. It has been a few weeks that we have spent each and every second together. This will be new. We must get back to our lives and routine. Paul has decided to retire, and his focus will be on getting better.

I went to the Social Security office on Friday and filed for disability for him. They were super. The gal behind the counter asked me to wait a few minutes… she came back and asked if I could bring a few papers and come back at 2:30? I said sure. Her supervisor wanted to get started on it right away- and sent the claim in that very day.

He said “I see your husband was in the military- can I ask what branch?” I replied- “He is a Marine.” He smiled… and told me that he liked how I answered the question… not- He was in the Marines.. or that he was a Marine.. but- He is a Marine! He is also a Marine, he told me to tell my husband that a Marine was handling this for him, and would see it through.

The good news is that he will get approved. The bad news is that it takes five months. They have a mandatory wait of five months. The date of the claim is the first day of his hospitalization… so In October- he should get his back pay… and begin to receive a monthly check.

Things will be okay.

We have an auctioneer coming on Thursday to sort thru Paul’s things. He wants to lighten the load. There is something healing, something “freeing” about getting rid of stuff. Stuff weighs you down… so we will unload some stuff- and prepare for the worse… but live each day to the fullest.
We are not naive about the prognosis… but we also aren’t going to just sit back and let the disease win… he will fight… and I will be right by his side helping in any way that I can. It’s not going to be easy… but we pledged forever- and we meant it.

Thanks to everyone for the love- please continue to lift him up in prayer and send him love… it is so necessary to beat this. Thanks too for the nice gestures, comments and emails… I am so blessed to have such good friends. I may not get a chance to always write back… but I do read and share each of them with Paul.

Until the next time…


Peace and Love,

Denise

Chapter 21

Thank you to everyone who has asked about the blog. I had intentions to pause in my updates to align with the timeline six years ago… then something happened. Paul’s daughters lost their mom. Out of respect to the girls and to the family, I stopped writing for a bit.

I ask that you send love and prayers to them still… I can’t imagine what it must be like, to not have a safety net. As we grow older, those of us who are fortunate to still have our parents, know that even though we don’t “need” them in the same way… we will always need them. Just knowing my parents are here when I need an ear, some wisdom or to share in the joy of my grandson is huge.

Please join me in lifting Jennifer and Melissa in our hearts… fill them with peace. Let them know in some small way, they are not alone. With love… with a card… with a text… just let them know we all care. ❤ Thank You.

 

*** If you are just joining me , please read some of the first posts. This is my story, these were email updates to hundreds of people who wanted to keep in the loop during my husband Paul’s journey with cancer. They are frank and they are raw.

 

Update 5-2-12
Hello everyone,

Just a short note to say how much I appreciate the email and prayers and Facebook messages. When I asked everyone to not write with questions or suggestions… That’s all I was asking for. I really do love the encouraging messages. Sometimes it’s what I count on to break up the mood. It’s just hard when people send messages about their friend, their sister, their second cousin’s wife… and they want me to research the treatment that was used.

I cannot spend any time looking into other options right now. My focus is on Paul and trying to keep things peaceful. I know everyone wants to help… but this is not help to me. It makes me feel as if I am not doing enough. It makes me feel like we aren’t getting the best care… there is just one of me and 100+ of you on this list… I am asking for you all to respect this and not suggest options.

We are letting the specialists be the specialists… we are not going to become google Doctors.

Here’s what I do know. The VA hospital is a teaching hospital. They have many Specialists who teach and also are on rotation at the U of M hospital. It’s state of the art here and we do feel that he is receiving the best care. We also do not blame anyone.

In the first few days… I had doubt. I honestly felt like he had been wronged. I felt that someone should pay for overlooking the nodules in his chest. After speaking to the many teams… and understanding more about protocol, treatments and the way this cancer moves… there is nobody at fault. It’s just a bad deal. Very bad hand- as one of the Dr.’s has explained.

When he was first diagnosed in 2011, they did a pet-scan. The cancer was active in his neck only. There were nodules in his lung. Those were mentioned on that scan and also the second scan- after his treatments were done in August. The tiny little cells never changed. They were not effected by the chemo. They did not grow or shrink. So… they were not given much thought.

When they found the metastasis in his brain… then they asked- wow- how did this move so quickly? How did it move there? Usually this type of cancer does not travel from the neck to the brain. It’s not normal… so they wanted to see another scan to see about those nodules in his lung. They feel there was a secondary spot- and it made sense, that it may be the lung. From the lungs- it can travel with the blood stream- and would travel to the brain.

When they found the metastasis throughout his body… they were all very surprised. Especially because this type of cancer doesn’t usually become so active- so aggressive or grow to these spots. So- now that they know more… and are still researching the origin… they are willing to look at options. Dr. XXX, from Radiation Oncology said she would pursue it aggressively. He is strong and not the normal case. She would seek all sources of treatment and that they are still looking at options with other teams nationwide. It’s not that they don’t know… it’s that nobody really knows. It’s not a normal case. They are looking at many options- and we are all staying optimistic.

He has four more radiation treatments left. I misspoke in the last update when I said he was on six. He had his sixth one today. Days are running into one another… it’s weird. I realized after a few days that I hadn’t actually watched the news to know what was happening in the world… I have watched since… and now know that I haven’t missed a thing.

Our hope is to go home on Friday after his treatment… we will see. I am still a bit concerned about his glucose levels- the steroid he is being given is making his blood sugar really high… so in turn- they are giving him a sliding scale of insulin. He has had a few days of eating what he chooses… and that bit him in the butt- when his blood sugar spiked over 400 and then over 500… so- after a little chat about food choices and pop… he is more consciences now. It’s just strange… he is not a pop drinker… but there is no normal here… everything is different.

The first few days he was cleaning his plate… now- nothing looks good or tastes good to him. (I have to admit, it’s all pretty bland.)

We also found out today that the steroid would probably be given even after the radiation treatments were done… so he has to learn how to manage it.

Please keep sending the love- and support- the prayers and the good thoughts… it’s really helping us!

Peace and Love,

Denise

 

Update 5.7.12

Saturday 5.5.12

Well… We came home on Thursday night, got up early and traveled back on Friday morning for his radiation treatment… Then back home again. Long day on the road.

We have to go back on Monday for his final radiation treatment and are thinking of leaving Sunday night because of traffic back up in the Flint area. On Friday- a portion of I-75 was closed, and it took us about an hour to get around it with the bumper to bumper traffic… Evidently it was flooded because of the storms. (Anyone who knows me… Knows I hate driving in bumper to bumper traffic… It makes me nervous! The S-curves in Grand Rapids make me nervous!)

Paul napped and rested most of the day- I went to the gym to catch things up and make sure it was still standing… The only odd thing was no matter how much I turned the radio down… It was always blaring. I turned it down… And it still seemed louder. I turned it down again… And even again. (The radio at the gym plays a Christian radio station… Hmmm…  Someone trying to tell me something?)

Our table is filled with mail… Lots of cards and prayers. Thank you to everyone for the thoughts and the cards… it’s surreal. Thanks to my mom and Phil for mowing and cleaning the house… It was nice to come home to fresh sheets on the bed and no smelly garbage.

Not much else to report. Just need to wait until he finishes radiation and then talk to the Oncology Deptartment about chemo. They sent us home with lancets and insulin. The steroids are still making his sugar high. They also added a few new meds to the mix. He takes a long-lasting insulin at night, and Glipizide twice a day now along with the steroid meds and an anti-seizure pill.

I think the reality of what we are facing has started to settle in… Just being home for a few days and seeing people and getting hugs… Oh boy… I feel so blessed to have so many people caring for us and praying for us. I can’t imagine my life without all of you. Please keep sending the love… He needs showered in it daily! It’s hard to know if it is the meds, inner hurt and anger, or the disease that is making him so edgy… Probably all of the above. Sometimes out of the blue- he will say something that floors me… it’s still hard to talk and to plan. But we know we must.

5.7.12

Today is now Monday morning- we are in Ann Arbor now… waiting for his appointment. We stayed at the same Hotel that I stayed in a few nights when he was in the hospital…

Yesterday we had a few good talks. It’s hard to describe the emotions. It’s so hard to know what the next step should be. It’s hard to plan a life… I guess the hardest thing right now is that he is tired and he is ornery. It’s the medicine… it’s the disease… it’s the fear.

I know I must allow him to follow his own path. I know I can’t own his emotions. It’s so hard… especially when we do everything together and we share everything else. It’s not mine to process… I must process my own thoughts. I must process my own fears. It’s not that I am separating myself… hardly… I am just trying to allow him to feel whatever he wants without trying to sway him to the bright side. (My bright side is the happy place that I go to… when I can’t cope… we all have a place like that… some call it denial… I call it safe. It’s where I am safe… it’s where I can process… I cry… I laugh… I get mad… then I come out and I am okay… it’s a brighter place that where this disease wants us to be… and for that I am thankful.. I have a great place to escape… I just wish that he had a place like that too.)

Trying to stay positive each day and not allow the negativity and the toxicity of the disease to slip in… that is the hard part. I know there are tons of resources… please know we are not stupid… but we must process it in our own way. I know there are helpful groups, programs and tons of online websites. Believe me… as a member of a 12 step program for over 13 years… I do know how support groups work. Each case is different though. Each person reacts differently. Each patient is facing a different type, kind, side effects and such… so please know… we are okay. We are going to be just fine. I am just venting- and thank you for listening to me. Just being real.

I have wonderful spiritual friends and they are supporting me in such an amazing way… I ask that all of you- please support Paul. He needs the love. I am okay… he needs the miracle.

Signing off now… going to take a walk while Paul showers and get some more coffee… Coffee is my friend.

Peace and Love,

Denise

 

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

Chapter 18

***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.

August 2011

The emails and updates ended here… it was a beautiful summer. We babysat Bogey, while Hailey and Cody were on their honeymoon. Life just seemed to go on. It was good. Paul got stronger and we even took a couple of trips.

We went to NY and had a great time! I had never been before, and because two of his sisters live there- it was foolish to not go!

We saw every part of the city, his sisters were great hosts and superb tour guides. We took some amazing pictures to document every step and when Hurricane Irene made her way up the East Coast- our flight home was cancelled. We spent another two days in NY and another full day in the city.  We even spent our second anniversary in Manhattan at a wonderful little restaurant with Rebecca, Paul’s sister. He still had his feeding tube, and meals weren’t always easy… but we made the best of it and talked about when we could return.

Then in March- we took a small vacation and went to Las Vegas. We stayed right on the strip and rented a car to go see the Hoover Dam. Paul was in his glory. He had always watched documentaries on the construction of the dam, he was fascinated with the entire process. It was a nice trip- a great way to break up the long winter… we flew out the day after our biggest winter storm. It was nice to leave a few feet of snow and spend some time in the desert. There were a couple of great points to the trip… and it makes me smile thinking back.

Here’s Paul- who by the way- dressed himself and packed his own clothes! People were laughing at us all day… You know they were thinking that I must have dressed him.

hoover dam

 

We had tickets to “The Blue Man Group”, and picked up our tickets at the will call booth. (This became an important piece… keep reading.) We found our seats and settled in… for those we have not ever been to the show- they have a scrolling marquee with announcements. It was repeating things like- No videotaping of the show. No flash… Do not get out of your seats during the performance. Just before the show was about to begin, the scrolling changed to wish a member of the audience a Happy Birthday. “Please join us in wishing _____ a Happy Birthday. _______ Please stand. Read this out loud. Happy Birthday to you… Happy Birthday to you… But- please do not sing.” (The person stood and we all clapped) Then it changed. “Please help us welcome _____ who was a member of the USA Olympics team. (The person again, stood up- we all applauded.) Read this out loud… Welcome ______.” Then it said something else about a famous author or something like that… and then… “Please join us in welcoming Paul Henry.” “Paul, Please stand… Say- Welcome Paul… Paul is just an ordinary guy- nothing special… Just an ordinary guy… okay Paul- you can sit down now.” Can you believe it?  It was the absolute best… It was his two minutes of fame…. We laughed for days. (We think they picked his name from will call.)

What a great summer… we camped with the kids one weekend… spent a lot of time with each other.

Then in October, we learned that Jennifer, Paul’s oldest daughter was expecting another baby. He was elated… Alexa was the apple of his eye and he couldn’t wait to have another grandbaby.

His appetite came back, but he still couldn’t eat everything that he wanted. His saliva glands weren’t working and he didn’t have his back teeth which made things real difficult. He ate what he could… and in his eyes- it was anything covered in gravy. Anything smothered or dripping in gravy was his friend.

Winter came and things just settled into a routine. Christmas flew by and everyone came home for the Holidays…

Mellissa moved back to Michigan… and was looking for a job. We even got to watch one of Cody’s Hockey games… not much else- just enjoying life. We had everything we needed. We were so content with each other… working hard- staying busy and enjoying being cancer free.

It was an emotional journey… I am glad we had a few months to re-coupe and gather our strength.

 

Part Two:

 

Update 4.23.12 Paul is in Ann Arbor

 

Hello All,

 

I am writing this email to ask for love and support. Paul is in Ann Arbor in MICU. (Medical ICU) He was brought here yesterday by ambulance from Cadillac Mercy ER.

At this point, we are on auto pilot. God give us strength…

I took him to the ER, because I thought he was having a stroke. They immediately did a cat scan and then an MRI. When they looked at the images and told us the results, I asked that he be transferred to Ann Arbor.

They have done many tests, another MRI and are giving him steroids and anti-seizure meds.

We are waiting for another pet scan and then they will fit him for full head mask.

I am not going to give this energy. I am not going to be in denial- but am not willing to allow cancer to win. They feel it may have metastasized to his brain. He has many lesions and once they do the petscan- they will know more. Not sure of the source. Not sure of kind. It will matter how they treat this… but at this point… it’s going to be radiation…. possibly chemotherapy. We will cross that bridge when we get there.

I am asking everyone- to pray. Keep us covered in prayer. He needs strength. His girls need strength. I need strength. Please don’t respond back with questions. I am doing my best to keep up with all the texts- phone calls and such… this is my way of updating everyone. Just send support… love… and prayers.

***

Side note…

This was the scariest day of my life… it all seems like a dream now. I got up on the 22nd of April and made us breakfast. We were both fighting a cold, and he was really sluggish. He had also gotten up in the middle of the night a few nights before and fell to his knees. I honestly thought he was overmedicated or taking the night time meds during the day… Or that he had an inner ear infection. I even did an MD search for the symptoms to see if it was serious.

I asked him to tell me what was wrong. I kept asking him to explain what he was feeling. For anyone who knew my husband- you all know how stubborn he is- if he doesn’t want to talk- he just won’t talk. No explanation needed. But this was different. He would look straight through me. His eyes were so distant. He got up to use the bathroom and didn’t quite make it. It didn’t seem to bother him either… he just sat back down on the couch with his wet underwear and t shirt. (This was a bigger clue than any other.) I got him some clean clothes and had to help him to get dressed. He wasn’t moving his left arm really good either… that was another thing that scared me.

I added his new symptoms to the MD app search and told him if he didn’t eat something- that I was going to take him to the emergency room. He said okay. I started texting my friend Darlene. (She is the RN) She said it would be best to bring him to the ER to get checked out.

I put down my breakfast and got dressed. I got him dressed and started my car. On the way into town- I asked… do you want to go to Saginaw, Ann Arbor or Mercy? He shook his head, nodded and said Cadillac.

My heart was beating double time… I couldn’t begin to imagine what was wrong. I needed to call the girls. I told them that I was on my way to the ER and I would update them when I knew more.

I pulled up to the emergency entrance and blew my horn hit the button and asked for help. The nurses came out and helped Paul into a wheel chair. They asked about symptoms and medications and went into action. I moved the car and went in through the regular ER entrance. I had to give his medical coverage information, birthdate etc…

This part is a blur… I must’ve called his sisters and mine too… because his sister Laura and her husband Jerry were there… and my sisters Cindy and Kim were in the waiting room… Hailey drove up from Big Rapids and Darlene was there too. The Dr. took me aside and told me they were doing a cat scan and an MRI. He said the results would be back as soon as someone could interpret them. I don’t know how much time had passed.

They put Paul on steroids and started and IV. I asked them to start the IV because of dehydration and the damage to his kidneys from the chemo and radiation. I reminded them he was no longer taking diabetes medication… Paul had visited the ER the year before because of fall on the ice. They had his records and wanted to make sure he was still taking the same meds…

The results came back and showed at least seven lesions in his brain. This is where I checked out. I went into auto pilot. I made the calls, arranged for his transport to Ann Arbor and started to try to reach his Dr. in Ann Arbor who handled his radiation. I called and emailed several times. The transfer was not automatic. They had to make sure that the VA would accept him in Ann Arbor. They needed to make sure they had a bed for him. They also needed to approve the ambulance transfer.

Jennifer was updating Mellissa and I was giving her information. Should she drive up? Should she be concerned? Should she make arrangements to go to Ann Arbor? (Jennifer was very pregnant at the time and was concerned about the stress and traveling.)

Now when I look back- I know that everyone else understood how sick he was. I didn’t. I thought the lesions meant something else… didn’t begin to put it together as his brain was filled with cancerous tumors. At one point the ER Dr. mentioned that the lesions may be a result of the recent chemo and radiation treatments. Okay? I didn’t know any different… I just knew that things were serious.

Here’s another side note… to this side note. The few months leading up to this day were very unusual for Paul and I. Not the norm. We went from a great summer into a slow winter… that’s when things changed.

Paul had started drinking more. He was drinking to excess and almost daily. He was eating really high sugar content foods and was super ornery. We had several serious arguments in the weeks before this. I couldn’t understand what was happening. He was not himself. I know now that this was because of the changes in his brain… One of the main tumors was on the left side of the temple area. This is the area that covers reasoning, personality and cognitive thinking.

I had a talk with Kitty during this time and mentioned that I felt like he was inviting the cancer back… he kept talking about how it was. I reminded him that he beat it- and he was not there now…BUT… for some reason- he wanted to re-live it. He kept talking about how I didn’t understand what it was like. He was sick again. His body knew it. And deep down… I knew it too.

***