Making Contact

The other day I was going through my Dad's old photo album from Vietnam. There's lots of old family photos in there too. People sent him their school photos when he was over seas and he'd stuck them in there. There were some I had no idea who they were. One was a man in a military uniform. At first I thought it must be someone he served with and the guys name was on the back. So I called my Dad and he said that it was someone who lived below his grandparents and his family and Dad's family had all gone to church together.

I got on the Internet and found out that this man's father had just died in January 2010 and it gave the town where this fellow lived, in Texas. It also gave the residence of his siblings. I looked him up and got an address, but no phone was listed. So I looked up his fathers residence in North Carolina where 2 of his sisters lived and there was a phone number. I gave the number to my Dad and he called it Tuesday night. The sister that answered remembered Dad and said "do you know how long it's been since I've seen you!" . It's probably been almost 40 years. She gave my Dad her brother's phone number in Texas and when Dad called he got an answering machine. He didn't leave a message.

So Wednesday night my parents were home watching the T.V. when the phone rang and Dad answered it. It was the man in Texas. He said his sister had called and told him Dad was looking for him and he was tickled to death! He and Dad talked for a while. Both finding out the other had cancer. The man told dad to go to the Veteran's Administration and get an I.D. and tell them about his cancer. The man in TX retired from the military and he said the agent orange used in Vietnam is known to cause cancer and the number one type they're seeing is prostrate cancer.

The guy got Dad's address and is going to write him a letter.

This fellow also had a sister. They called her "Cookie" and according to my aunt Cookie was BAD. She always got my aunt in trouble and she'd do wrong and my aunt would get whipped for it. My grandpa whipped them with an old miner's belt too! Which is a regular belt with lots of little belts and buckles all the way around it, ouch! My Aunt says she'd going to look up Cookie and go beat her up for all the stuff she did as a child. I found Cookie! She only lives about an hour from us, so she better watch her back. There's 5ft and 90 lbs of trouble coming her way!

Last Treatment

Today is my Dad's last chemo treatment. Sometime this month they'll do another bone scan and CAT scan to see how it's worked. Got to be good news right? It's about to be the holiday season!
He's doing great! He never lost his appetite but isn't as active so he's put some weight on, but that's much better than wasting away. They check his finger and toe nails because they can fall out, but none of that has happened.
He was here last night and as he sat on the couch Isaiah sat stuck to his side, Naomi on his lap, playing with his chest hair. The dog sat on his shoulder, yes his shoulder, she has to make sure she can stick her head between him and any grandkid that wants more attention than she is getting.
When he got up to leave Naomi took off running and cut him off at the pass. She stood firm in front of him and threw up her arms so he'd pick her up.

Going Bald

My dad's hair was falling out because of the chemo so he had it all shaved off yesterday. Isaiah thinks it's hilarious. Because my Dad still has a lot of body hair Isaiah told him he looked like a bald gorilla, which made Dad laugh.
When we got home from Cleveland yesterday I talked to my Dad and he sounded a little sad and I told him what I'd seen at the clinic.
When we walked into the clinic yesterday there were two girls who were maybe 13, if that. One girl had a scarf wrapped around her head, obviously chemo had done a number on her hair too.
I told my Dad he's lucky to have kept his for 60 years. After seeing that girl and how she's spending her summer vacation how can you not take a break from worrying over the side effects it's having on a 60 year old who refuses to quit working even though it's wearing him out. He did finally talk to a supervisor and ask if he could be excused from working the 10 hour days and only put 8 in. Of course they agreed. They would have agreed weeks ago if he'd just have admitted he couldn't do it (especially in this 90 degree weather!)and asked.
Dad said he's never felt so bad as he had since starting chemo. I think a lot of it is depression and being tired. He's having trouble sleeping and that doesn't help, it would affect even a healthy person.
It is what it is. You either take the good with the bad or let the bad overtake everything without a fight. Of course that's easy for me to say, it's Dad's fight. I'm just glad he's fighting. His father died of a brain tumor. He had bad headaches and when told to go to the Dr. he'd say "why they'll just tell me it's a tumor". He was right and that's what he died of. I don't think he ever took any sort of treatment for it. Of course that was in the 1970's and treatment was archaic compared to today.
I guess because I worked at a nursing home when I was younger and saw a lot of death I'm just not scared of it. It's more of the process that's scary and it's hard on those of us left behind, trying to figure out how to go on. But go on you do, the world has yet to stand still because any one person died, even Jesus.
I think Dad will always be with me, and that's a comfort. Hopefully chemo will help and add a few years onto his life. But this whole experience has made me stop and think, and realize that he will be gone one day. Whether it's 1 year or 20 it'll be hard.

Dad

My Dad had his first chemo treatment about two weeks ago.
He's still working but it's getting to him. His job is on 10 hour days plus 8 hours on Saturdays and my Dad works through his breaks! Always has. My husband works with him and takes him water and such and has tried to tell him to slow down. Even his boss has said take a break when you need to. But Dad won't let them down. If it needs done he'll get it done. I think Mom is going to contact his Dr. and get them to give him an order that says he can work no more than 8 hours a day. Maybe if it comes from the Dr. it'll take it out of Dad's hands and he can relax some.
He didn't get really sick from the chemo and actually felt a little better on days. The problem is it's just like when Naomi was on meds. Anytime anything happens it's like, OK, is this meds or is this disease? He's really emotional, maybe even depressed. He's really quick to tear up. I don't know if that's chemo or hormone treatments. I told him he sounded just like me after I had Isaiah and I wouldn't feel sad but tears would just start rolling down my cheeks and I had no control over it. He's wore out in the evenings. He told my mom he's just so tired and she told him he ought to be tired! He's 60 years old and trying to work like a much younger man!
His appetite doesn't seem to be affected. He doesn't look sick in any way.
The Clinic sent him to the heart clinic just as a precaution to be checked out and have an EKG this week. I guess there were quite a few characters there that day including an older man who kept saying "Frank is in the building". Referring to himself :)
Next week he goes to the Clinic to have a dermatologist check out a spot on his face that has caused problems for quite a while. It may be melanoma.
Then the following week he goes back for another chemo treatment. He'll go every 3 weeks. Hopefully we'll have good results.
Last Sunday in church when they asked for prayer requests it was heartbreaking! Several people with cancer, a mom with postpartum that tried to commit suicide, a family who's father had been with the same company for over 40 years and just found out the company went bankrupt. So many sad stories these days.
My cousin is about 2 years younger than me. He has a brain tumor, 2 mortgages, 3 kids and was caught in the latest round of lay offs at his job (he works with my Dad and husband).

Happy Birthday Dad

Sunday was my Dad's 60th birthday. My parents came over Sunday and I made supper. We had BBQ ribs, fresh corn on the cob, baked potatoes and black raspberry pie. Isaiah picked out the pie. I was going to make a blueberry cream pie but the farmer's market had no blueberries this week. Isaiah said "why don't you just buy one mom?". The thing is, in most places a bought pie just wouldn't be the same as home made. But here, we have Amish! Wonderful, home baker's who sell their goods for a fair price. I paid $5 for the pie. My dad loved the pie. Isaiah picked that flavor because somewhere in his brain he remembers long ago that my dad got a black raspberry ice cream cone. The kid doesn't miss a thing!

Before Dad left I gave him his cards. I guess he got a chuckle at the "present" I put in his card. A crumpled up one dollar bill. He just doesn't know what he's going to spend it on. He told mom he was going to save it. You just never know what little thing will make someone happy!

August 2 we all got up and went to church. There are plenty of churches to pick from in our own town but this is a special church. This is the church some of our extended family goes to. My Grandma Naomi had a cousin who's family has attended this church for quite a few generations.

I think the board said 49 were in attendance last week. That's the kind of church I like! I don't go for these mega churches. There's a lot of older people there. Lots of farmers. One man had an awesome farmer tan. It looked like he had white glasses on! Another man is 80 and still holds a season pass to Cedar Point where he goes several times a summer and rides all the roller coasters.

While we were upstairs in church Isaiah was downstairs with the kids. It was our first time at that church so "Uncle" Mel took Isaiah downstairs. They decorated construction paper T-shirts. Isaiah's was yellow (his FAVORITE color) and it said "Cartoon Network" on it. I said "know what he's done this summer?". That kid loves cartoons. He loves drawing and watching them.

After church was coffee hour. The church's motto is "we don't meet unless we eat". There was a nice spread of food. Way more than just coffee! There was quiche, breakfast casserole, fresh fruit, blueberry muffins and grapes in snow (brought by my mom). While I was eating Isaiah came and said "Mom. You know that blonde kid? He says he's my cousin". I told him he probably was. Mel informed Isaiah that he was probably related to 3/4 of the people in the church in some way. Isaiah smiled and ran off.

When we walked in to coffee hour Isaiah said "Wow Mel is way older than I thought". Which made me crack up! He's seen Mel a few times over the last couple years. Isaiah just doesn't remember people well unless he sees them often. Mel's actually a 3rd cousin, not an uncle. He's just 1 of seven kids so he's uncle to a lot of the kids! Plus almost everyone calls his parents Grandma and Grandpa, they are the ideal grandparents.

I told Mel what Isaiah said, he's only 46 and he kept kidding Isaiah. While in line to eat he went to grab a blueberry muffin and said "is this something an old person would eat?" and Isaiah got tickled! It ends up, what Isaiah was talking about was this photo of Mel. Isaiah apparently thought this yearbook yourself photo that I made of Mel was a real photo! He thought Mel was in High School! Thank goodness none of that is true. Can you imagine how badly he'd be picked on if he looked like this? He's actually a mortgage loan officer.

We sat and ate for an hour then headed home. It was a great experience and I'm sure we'll be back. Even though it's an hour drive.
But we sure didn't leave hungry!

Good News

We seem to have some good news from the oncology doctor at Cleveland Clinic.
My dad has to take hormone shots every three months.

The cancer is in his bone and lymphnodes in his stomach (?), but the hormones will slow or stop the growth of the cancer. The doctor drew an illustration to show my parents that the hormones block the brain from sending messages to what ever produces what we don't want produced.

Also he is eligible for a clinical trial at the clinic. They've always done the hormone treatment then if that doesn't work they do chemo. The doctor said the thought now is going towards, why wait until you're sick. So if he takes part in the trial he will not only take the hormone shot but will take 2 hours of chemo, one day a month for six months! My Dad said he was just doing the shots at firsts, then I got on the phone and said "Dad this is a no brainer! Why wait!? Go after it now!" So he said Ok, he will go ahead with the trial. They won't even have to pay for it! The doctor said all they'll pay is their $25 copay. So all in all it will cost them $150 over the 6 months! Like I said No Brainer!

I'm so happy they went for a 2nd opinion at Cleveland! Those doctors are wonderful up there! Dad said he sat and explained thoroughly everything and answered all their questions. The doctor even told him if he decided he didn't want to do chemo any longer he could stop at anytime. They wouldn't use him as a guinea pig.

Dad's PSA was low. That is a protein produced by the cells of the prostrate gland. They take a blood sample and measure the PSA and they can mark the disease by the levels rising, or something to that effect. There is no "normal" PSA, but generally when it rises above 4 they do a biopsy to check for cancer. Well Dad's was only 2 something. Apparently Dad's body doesn't produce the protein. So it would never have been detected that way.

Also, not about my Dad, but about the clinic. Last week a local news was doing a story about the proposed universal health care. They interviewed one of the heart specialist at the Cleveland Clinic. He said if they can come up with a good plan he's all for universal coverage and we should be ashamed that there are 76 million in this country with no coverage. But then they were talking about why Cleveland has such good care and relatively low cost. Here's why, and I don't know why every hospital couldn't adopt this!! Cleveland Clinic doctors work on salary. The heart Dr. said whether he does surgery or angioplasty he makes the same amount of money. Plus Cleveland has all it's specialist under one roof so there is better communication and a group effort in treatment. There is very much a focus on wellness also. This made so much sense to me! It also made me feel like our Dr. wouldn't order unnecessary tests just because his house payment is due (know what I mean!?).

Well, I'm happy, so very happy and thankful! If not for Akron Children's making me so mad when I went there for Naomi I wouldn't have taken her to Cleveland. If not for the excellent care we've gotten there I may not have insisted my Dad go there for a second opinion. If I hadn't he'd be going through radiation right now that would be doing NOTHING for him!

Everything happens for a reason!

To the Hospital

My Dad's appointment was for 3:15.
My mom wanted to leave by 1.
We got there in record time and were sitting in the waiting room by 2:30.
They have a new system where they have you clip this badge on and then they can tell where the patient is in the building. Yet, they still kept calling names and saying "where's Mr Zimmerman? Mr. Zimmerman?" So why couldn't they just look him up on the GPS type thingy?
They have you fill out this questionnaire on a little computer. My parents are not computer friendly so I did it even though it's just put the pen on the correct answer then put the pen on next. Don't exactly need an IT degree for that. I wonder what the 75+ year old people think of that? I bet it intimidates them.
So, the Dr. comes in, hands us each one of his cards. Which I liked immediately. Like saying "here's how to reach me". Then sits down and asks what is going on with my Dad. I told him- "Friday they go to the urologist, he basically says 8 weeks of radiation you'll be good as new. The next Wednesday they go to a radiation oncologist who says there's nothing he can do for him. Two totally different opinions and they both would have been looking at the same pathology report."
So he looks at the report. Sees that Dad's PSA is really low, below the level they would even normally check for cancer. Then flips through everything else. He says "This doesn't jive". I think that made my mom a little relieved. To have a Dr basically say this makes no sense, because that's what we've been thinking all along.
He immediately said we need new tests done. He set up appointments ASAP for a bone scan and CT scan and he sent us straight down to the lab to have his PSA retested. Then he said Dad needed to see an oncologist as soon as all of that was done and gave us the name and told us a little about the oncologist he recommends. They've already set all of that up. So by the end of this month all of this will be in full swing.
Here's what I'm now thinking about the previous, local doctor my Dad saw. He was a urologist. He should have found the cancer, then sent Dad to an oncologist who specialized in prostrate cancer treatment and THAT doctor should have decided what route should be taken for treatment. So now I can't help but think of all the poor men who've gone through this and just went with what the Dr. said and may have been helped by a different treatment.
For all the men out there, when my dad said "isn't below 4 a normal PSA?" the Dr. said "there is no normal". He also said that metastatic prostrate cancer with a low PSA is not impossible but it's very rare. So that's where we are. I feel like my Dad is in excellent hands. Did I already say that the Cleveland Clinics urology department is #2 in the country! We are so blessed to have such awesome care so close to home! I love each and every Dr. we've come in contact with there!

Weaning

Naomi is now down to 200 MG of Keppra twice a day. I moved her down to 200 mg in the a.m. a week ago. So much has been going on this week I wanted to wait until we'd be home with no appointments for a few days so I could drop her evening dose down. It's the evening dose I always worry most about because she has clusters in the morning. Then this morning I thought, "Is it the smartest thing to drop her on a Friday night knowing that all the Dr's offices are closed for the weekend?" DUH!
Well, so far so good. Her ketones are down with the calorie increase we did. I've emailed the dietitian and told her to go ahead with the ratio bump. I think we'll just go to 3.75:1 for now and if in 2-3 weeks I still want to bump her to 4:1, I'm calling and getting that done. Even if I have to call her neurologist and whine like a 5 year old and say "But you PROMISED!".
Update on Dad- I called and got him an appointment for Wednesday with a urologist at the Cleveland Clinic. There is none better. We'll see what he says. Dad's current urologist basically said it's still in the prostrate, 8 weeks of radiation you'll be good as new. That was Friday. Wednesday the radiation oncologist said he didn't even know why the Dr. ordered radiation, there was nothing he could do for him. So 2 very different things! From the paper work I've seen even if it is still in the prostrate it's an aggressive form of cancer. Not the slow growing cancer usual to the prostrate.

Dad

Sorry for the downer but my dad has been diagnosed with prostrate cancer and it doesn't sound good. I'm calling for a second opionion today with the best cancer hospital in our state.





But how will I ever break the news to his "Best Pal"? They are closer than close!