Chapter 12

Email to Paul’s Dr

Subject: Paul Henry

Sunday, May 1, 2011 10:40 AM

Hello Dr. Jolly,

Paul is in the Saginaw VA hospital. He is being treated for dehydration and his creatinine levels have been too high. They were 3.5 then 3.4 and are now 2.8. The Dr. wants to keep him here and for him to see a kidney specialist later in the week. They said they will transport him by ambulance to Ann Arbor and then back here to see the other Dr. tomorrow. I honestly would feel better if he was there. Do not know how to reach you or anyone else on his team there. Here are our phone numbers XXX-XXX-XXXX is my cell and XXX-XXX-XXXX is Paul’s number.

He has been here since Friday afternoon.
Thanks so much,
Denise Henry

 

 

Update 5.2.11

Monday, May 2, 2011 3:17 PM

Hello Everyone,

What a crazy weekend… oh boy…

Our weekend started on Thursday because the radiation machine was being moved on Friday- so no treatment on Friday. They ordered blood work- because of chemo treatments on Monday and Tuesday… for Friday. He decided to drive home Thursday- and just go to Saginaw on Friday for blood work. (Otherwise- he would’ve had to stay another night in Ann Arbor.)

On Friday morning- he hit the road early- went to Saginaw and had his blood work done. He then came home- drove to Lake City- looked at a house… took some pictures and the hospital called. They wanted him to come back to Saginaw- ASAP- because something wasn’t right with his blood work. They said he was dehydrated and they were concerned about his kidneys. He called me at work- so I left early and off we went to Saginaw. (He packed a bag- not knowing if they would keep him or not… I just grabbed my makeup bag.)

We got to the Saginaw VA hospital around 5:30. They immediately did a blood draw- hoping… that it was lab error… and started an IV. The test results came back- and they were the same. His creatinine levels were at 3.5- and normal is .8 – 1.8 range.

They decided to admit him- and the Dr. explained that he just needed to get hydrated- and that he was going to do a full admit- so they wouldn’t have to admit him again the next day… if the levels weren’t right then.
This was now around 8:30 or so… the nurse in the ER gave me information on the hospitality house- and I also contacted a cousin on Facebook. She in turn- called her sister and dad – who both live in Saginaw. The hospitality house was full…

I ran outside to lock Paul’s meds in the car- and left my purse and phone in the car. They finally got him moved and into a room upstairs around 10:00. One of the nurses made a phone call to a hotel around the corner… and they had one room left. I had to run back to the car- grab my phone and purse… and by the time I called- there was no answer.

At this point… I am getting nervous… it’s 10:15pm. As I was trying to reach the hotel… there were two messages on my phone. One from my Uncle Lawrence and one from his daughter, my cousin, Ellen. She said- call no matter what time- if you need anything or a place to stay… she even offered to come get me.

I called Ellen. She drove to the hospital- picked me up and brought me back in the morning. (Thank God for people who are willing to step in and help when you just don’t know what to do?) The nurses were scaring me… don’t drive here- don’t go this direction… stay out of this part of town… I guess- two blocks in the opposite direction from the hospital- it’s not a safe neighborhood. It’s not somewhere to drive during the day… let alone at night especially when you don’t know where you’re going!

Ellen and Pete have a place about ten minutes from the hospital- after breakfast on Saturday- they took me back.
By the time I had got there- they had already done his blood work and the results were back… his creatinine level was 3.4.
The Dr. said he would check it again later that night- and maybe he could go home then. I just hung out with Paul… pretended to have a slug day in the hospital… I gave him a back massage… rubbed his feet… and when he started getting tired- I told him I wanted to go buy a clean t-shirt and some clean undies… I had showered at Ellen’s… but still wanted to grab a bite to eat… and some clean clothes.
When I got back… no blood work… and the computers were down from 3:00pm-12am. I played on my iPad… read on my kindle… and just hung out while he watched TV.

My Uncle Lawrence came to visit- and kept us both company for a few hours… it was nice to see him and very nice of him to take the time to visit.

I finally talked to the nurses around 7ish… they said- no- he’s not going anywhere…

Remember back now to the discussion with the ER Dr… He did a full admit… now everyone thinks he is supposed to be there- under their care… for the weekend! ugh…. I asked about the blood work that was supposed to be done that evening… nope… No order with the computer system down. Ugh…

So- back I go to Ellen and Pete’s couch…
Sunday morning- they did more blood work. His creatinine levels are now at 2.8- but the Dr. spoke to Paul and told him he wouldn’t release him. He said he was going to keep him another night… He told him that he might even ship him by ambulance to Ann Arbor. WHAT?

Okay- so now it’s after noon… the Dr. called while I was sitting there and I picked up the phone. He started to tell me that he was concerned about Paul’s kidneys and that he needed to see a specialist on Monday. He said he’d rather ship him by ambulance to Ann Arbor while he was still admitted… If he released him, they would have to do another admit once he got to Ann Arbor… and it’s just easier if he stays in the system. (hugh??)

I told the Dr. that I did not want him to be shipped back and forth- his primary care is now in Ann Arbor and that is where he would go to see a specialist. I reminded him that Ann Arbor is the one who ordered the blood work originally- they know what’s going on… this is a result of his chemo… and that he has a team of Doctors there.

I asked if anyone had communicated anything to the Dr.’s in Ann Arbor? And I told him I would feel much better if he was there! He said he’d have to make a few calls… to see if that would be possible.

At this point- I started emailing and calling Dr. Jolly. I didn’t think she knew what was going on… I felt like he had been lost in the shuffle.

I went down the hall- and to the nurses’ station. I spoke to the head nurse… he said that the Dr. was just covering his butt. Bottom line… there is one Dr. on weekends for the entire hospital and he floats between the floors. (It’s a small operation…) Anyway… because he doesn’t want to be responsible- he would just keep him there… so nothing could happen to him. I told the nurses- all of them- he didn’t want to stay there.

I felt like he had slipped between the cracks… and nobody knew what to do. They would knew what to do in Ann Arbor… and that’s where we wanted him to go!

That nurse said to me… if it was me… and the Dr. didn’t release him… sign him out and just take him. (He also said he would deny it if anyone asked him later…) He said he was talking to the Dr. and told him we were on top of things… and would follow up in Ann Arbor tomorrow. He told me that he would have an answer- one way or the other… in just a few minutes.

Fifteen minutes later- the nurse came in and said you’re free to go. What? Yup- you can go… so we did.

As we were walking out of the hospital… I told Paul- this is the only time in my life- that I had seen someone walk out of a hospital. His room was on the third floor- he just got dressed and we carried his bags out- and left!

As we were pulling out- I told Paul that that whole thing felt weird. He said- I think I’d still be there if you didn’t break me out of there… we laughed. Seriously… that’s exactly what it felt like… it felt like he was escaping!
Got him home- he kept hydrating himself… slept a lot and then got up this morning and headed to Ann Arbor for his radiation treatment. He left early enough to check in with his Dr.- so she could know what was going on… and see if he needed more blood work and to talk about a kidney specialist.

Dr. Jolly called me- and I explained what had happened… and that Paul was on his way there. She said unfortunately- this sort of thing happens… and that now that he was on his way back there- she would see to it that he was back on track. She said they could possibly admit him- if his blood work still showed his creatinine levels were too high… she would talk to him once he got there.

Since then- Paul has had his treatment- and scheduled an appointment with the kidney specialists for next Monday and blood work for today. I feel so much better now that he is back in Ann Arbor… Ohmygoodness!

I have spoken several times about how things come in waves. How the serenity is usually there… haha… when things are going good… and even sometimes during the midst of the not so good… but when it’s all over… I take a big breath and want to cry… and I usually do.

I am crying “uncle”… enough is enough. I would like for the rest of his treatments to be uneventful… and for him to just get through this and just be home again. It just plain sucks to see him in a hospital bed… when it’s so nice outside. He wanted to plant his strawberry plants… He wanted to get some grass seed going… If you all knew how much of an outdoors man he was… it’s not fair. (As I am sliding back so quickly… I breathe and am okay again.) I have no blame. I have no ill feelings… it’s just overwhelming and I want it to be done.

I don’t even pretend to know the answers. I can’t possibly know the why and it would drive me crazy to even go there… People say things like- God only gives you as much as you can handle… I am honored he thinks we are this strong… really… but enough already.

I think it’s time for some quiet time for me… maybe a little yoga in the morning… get things back on track… get re-centered and balanced. That is some draining stuff!

Thanks sooooo very much to Uncle Lawrence, cousins Laura and Ellie and Pete for your hospitality and for your ear. I am grateful for such a loving and supportive family and all my friends, who have helped with the prayers all weekend. As we are walking through it- it doesn’t seem like it’s much… seriously… you do what you gotta do- and you get it done. Then when it’s done… you realize how much of a toll it’s taken on you…

Bless you all- and thanks again from the bottom of our hearts…
Peace and Love,
Denise and Paul

 

 

Email from Paul
Subject: Us
Tuesday, May 3, 2011 2:51 PM

Wow! What a week it has been! I would just like to thank my wife for her courage and for being there for me at all times. She is truly a saint to me and I don’t know what I would have done without her through all of this.

She has been through as much hell as I have and for those who have never been through anything like this, believe me it is hard on your spouse.

She has remained strong for me, and I’m sure at times she has cried as I have. She is the strongest person I have ever met, and I will forever be grateful for all of her courage and caring that she has given me. I know God has a plan for Denise and I, and we will fulfill that throughout our lives together.

I just wanted everyone to know that it is just as hard on her as it has been for me. I have ten more treatments left which ends on May 17th, and we can start to rebuild our lives once again. I have so many people to thank for their prayers, the thoughts, and just being here for us.

We love you all and God Bless everyone. To my wife; I LOVE YOU HONEY, AND THANK YOU!! Going to get a nap in. Finally!!
Paul

Chapter 11

Email from Paul
Tuesday, April 19, 2011 8:01 PM

Hi honey.

Just wanted you to know that I miss you and love you very much. Being here is really tough without you. I look forward to the day I can come home and start a normal life again. May 17th is now my last day, as they canceled my appointment today and will add it on to the end. (bummer)

It’s not as tough as it was when I first came here, but still would rather be home with you. Life takes you in strange paths, and I don’t have an answer why, and really don’t look for one.

I remember when I first left for the Marine Corps, I spent 3 years of my life away from family and friends. It was tough, but then you get used to it because you have no other choice. You do what you have to do in life. I was younger then and I also wasn’t married at the time, so it’s different this time.

Time is going by quick for me so far, and thank god that I come home on weekends, or it would be even tougher. I don’t know how this is going to change my life exactly, but I do know that it will give me more respect for people that have to go through this. I’m sure there are people that go through it alone, and I sure wouldn’t want to be in there shoes. I know I am going to make something out of this experience in the future, whether it is talking to people about cancer, or just supporting people that are getting ready to go through it.

Lots of thoughts! I do know that I am glad that I have you to fall back on, and to know that you are there for me. The kids also have given me so much support on a daily basis, and I will always be so thankful for that. Alexa has no idea what it feels like to just see her, and watch the little smile on her face. What a blessing God planned to have her around for all of this. Someday I will tell her what it meant for her to visit me. Well I am going to sign off for now, and again thank you honey.
I LOVE YOU
Paul

Email from Paul
Monday, April 25, 2011 4:03 PM

Filed a complaint on that Doctor that treated me like shit last week. A patient advocate got ahold of me and asked me about it today and I told her the story.

She said that it should have never taken place and that they will look into this with his supervisor. She also said a board will be asking him questions about it. I also told them that I have a follow up appointment with him next week, and that refuse to see someone that treats people like he treated me. She that I have that right and they are going to have me see someone else. This guy has deeper problems and is bringing it to work in my opinion, and I hope they do something about him. Maybe he will think next time before he opens his mouth to the next patient.
Love you,

Paul

 

 

Update 4.25.11

Monday, April 25, 2011 11:18 PM

Hello Everyone!
Hope everyone had a wonderful Easter!
Lots happened last week- here is a shortened version…
On Tuesday- the radiation machine was down…so no radiation on Tuesday… Not sure what to think about the radiation machine on the blink… hello? Seriously? Paul said he told them he didn’t want to be the first one back in once it got fixed!

Then on Weds, Paul met with a Chemo Oncologist and talked about many things. (Tongue in cheek… seriously- this is the first time he had anyone be anything other than super duper nice!) Long story short… the Dr. was inappropriate and Paul didn’t appreciate it. The best part of that day? He now has some amazing drinks that have all the calories and nutrients his body needs. So- no more struggling with meals- no more muscle milk… and he is now using his feeding tube for the drinks.

We talked at length about it- and what a relief it must be to not have to manage food. No worry about spices, no worry about hot or cold or enough calories or protein or anything! He can get everything he needs now… and they supply them all. I wonder why the dietitian from last week never mentioned these? Oh well… things are under control now. They are called 2 Cal drinks. Paul said there are about 32 vitamins and minerals in each can- and they are about 500 calories each. (He is drinking 6-7 a day!)

After the “not so nice” Dr… he met with Dr. Jolly. She confirmed several things for him. First of all- the cancer is viral related. The second is that the VA will fix his teeth when he is all done and in remission! 🙂

She asked him if he was comfortable with the molars gone… he said- no- he was planning to do something about that when he was done. She said- we took them out- and we’ll fix them too!
She also said they were treating the cancer with a very strong dose of chemo- and possibly it was too much. She said they were thinking of either switching it- or giving less of a dose. At one point when they were discussing his weight loss- and the new drinks… she said maybe they needed to increase his calories too. She said maybe he had a real fast metabolism- and that he needed more than the 1500 calories a day… so he was immediately bumped up to 3000 a day!
Because of the missed the radiation appointment on Tuesday- he either needed to make it up at the end… or he needed to make it up on Saturday. He chose Saturday.

Also- his white blood count was too low- so no chemo on Thursday or Friday. They took more blood on Friday – and scheduled a chemo session for today. He needed to be back down there early for more blood work and a possible chemo session. (Depending on how his blood count was) His blood work was good- and he has already gained back two of the lost 12 pounds! So- they did do chemo today… and another dose is scheduled for tomorrow morning too. (They chose a milder dose of the same kind.)

With radiation on Saturday morning- and a 7:30am appointment today… he decided to not drive all the way home for the weekend- instead- he decided to drive to Jennifer and Andrew’s house in Kalamazoo. (Mattawan) It’s just 1.5 hours from Ann Arbor- vs.three hours home.

During the week- I started to sniffle… I had some dry coughing and drainage…. wasn’t sure if it was allergies- or if I really was getting a cold. I didn’t want to be around him if it was a cold… so I made arrangements to stay in Portgage with my friend Stephanie. I got a few masks from a friend and decided to just go and visit and we’d both mask up.

As it was- it wasn’t a cold… or if it was- it surely responded well to allergy meds and dried right up! I spent a few hours with him on Saturday- and then drove back and spent the night with Steph. (She by the way is the hostest with the mostest! Love Love you Steph!) Then I got up on Sunday morning and drove back to spend the day with him.

We had a nice Easter. What a gorgeous day! Spent time just hanging out. It was weird- but our circumstances certainly aren’t normal right now… Normally Easter revolves around a family meal… a big dinner at my moms house… church… food, family… with lots of kids around… this one was just us hanging out… Until Alexa got home! 🙂 Then it was all her! I can’t even begin to tell you how much she makes him smile. She is such a happy baby! She is her Bampa’s love… that is the healing love he needs!

I am extremely grateful for such awesome family and friends. Thanks to Jennifer and Andrew for allowing us to barge right into your Easter weekend… and make us feel like it was nothing… Thanks Stephanie for taking me to the best Indian restaurant- Ever! And thank you to Andrew’s mom and step father (Nancy and Greg) who gave him a funny card and a visa gift card- Thanks to everyone else for the cards, well wishes, prayers and good thoughts! Keep those prayers and thoughts coming… with Chemo this week- I am sure he may need some extra support this weekend!

I am also thankful that we have the VA for Paul’s treatments. I can’t even imagine how things would be for us if they weren’t in the picture.
If I am forgot anything… I will continue tomorrow… It’s late and my pillow is calling me…

Night all- Love to you and yours!

Peace and Love,
Denise and Paul