Email from Paul
Tuesday, April 19, 2011 8:01 PM
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
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.
Monday, April 25, 2011 11:18 PM
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