10 months later...

So on June 4th of 2008, Doctor Stone told my Dad he had about 10 months to live. That was a whole year ago.

Dad is okay some days and some days he's really quite sick. It all depends on what his platelet and red blood cell count is. He has platelet transfusions pretty much every week and gets blood transfusions about once every 2 weeks. That depends on what his CBC (blood panel) says. He has his blood panel done every Monday and Wednesday. Now my parents lives are about going to the hospital, then waiting for the phone call. Of course they also focus on eating right and making sure to get out into the garden or play with their pets.

One month ago, Mom was diagnosed with Merkel Cell Carcinoma. It was a small bump on her arm that turned out to be skin cancer. She got the call about the biopsy on a Tuesday, met with the plastic surgeon on Thursday and had surgery scheduled within 2 weeks.

Pre-surgery, they injected her with a dye. The dye was intended to move into her sentinel lymph glands, so the surgeon could remove those, in addition to removing the cancerous bump and surrounding tissue, so that the glands could be tested to see if the cancer had spread.

Mom handled the surgery like a pro. It was outpatient, so we got there at 9:00, she was injected with the dye at 10:30 and the surgery started at 1:30. We took her home at 4:30. The waiting was the hardest part, oh and she tossed her cookies about 1 block from home. After a 4 hour car ride, I guess the bumpy streets stirred up the ickiness in her belly.

Mom was fine the next day, aside from the incision under her arm pit and the 24 stitches of divot on her bicep, she was fine. 3 days later the surgeon called. Ok, full disclosure, he was supposed to call 3 days later. Mom called him during the day, left a message and his assistant should have called back. When nobody heard from him, my sister somehow found his personal e-mail and emailed him that we were all waiting on pins and needles for the results. He called my parents at 9:30 at night to let them know there was no sign the cancer had spread. Mom was going to be okay. Thank you Dr. Tsoi!!

So today is a little over a year since my Dad was given 10 months to live. Dad went into the hospital this morning. His balance troubles have been steadily getting worse over the last few months. His physical therapist says it is probably time for him to start using a wheelchair. This morning he woke up and could not sit up without tipping over. (I've had vertigo this bad before, it ain't good.) Mom called the ambulance and they took him over to the Haxtun Hospital. After the CAT scan, they determined he has 2 hematomas on his brain. Basically, he's been bleeding into his brain.

I'm not terribly surprised by that. 2 weeks ago, he didn't get his platelets, but he got 2 units of red blood. When Dad gets blood with out platelets, his blood doesn't clot and he "leaks" as he calls it. The irritating thing is, he was supposed to get platelets, but the courier service "forgot" the platelets and the doctor in Haxtun, Dr. Lyla, who is the same doctor who prescribed him the Levaquin, the same doctor who didn't catch his anemia when it started, 10 months before he was diagnosed with MDS, that Dr. Lyla told the courier "oh he'll just get platelets tomorrow." When she should have told them to get their butts back up to Greeley and get him platelets for the same day as the blood.

I would honestly feel much better if that doctor would go jump off a cliff, or the very least, stop practicing bad medicine. (not the Bon Jovi song)

So that brings us to now. Dad is in the hospital, waiting for Dr. Stone and another specialist to tell him what is going on, how to fix it or how to stem it. I'm out here in CA waiting for news. These are the days I wish I lived closer. For all the "living in the moment" bullshit I spout all the time, it's scary on days when the crap stuff happens. It's very hard to live in the now, when all you want to know is what's going on.

Since I can't be there to fetch sandwiches or feed the animals or mow the lawn, my best effort was to call and leave a horrible joke on their answering machine. It was poorly delivered, but I hope my Mom at least gets a chuckle out of it.

The Sniffles

I had the tickets, had the car rented, had the cat-sitter booked but then I had the sniffles.

We were supposed to be on an airplane tomorrow afternoon to go to Colorado and see my Mom and Dad. We were supposed to be helpful, fixing air conditioners, pulling weeds, cleaning closets for about 48 hours in the Big Sky Country. But...

Early Monday I started sneezing, my nose started dripping, my throat began to close. Understand that San Fernando Valley has an air quality rating of "Unhealthful" right now, so it may be allergies, but there is also a cold going around. I can't go home with a cold.

One of the side-effects or symptoms of MDS is lower white blood cell count. When it falls too low, it's called "Neutropenia" or the patient is "Neutropenic". When my Dad is neutropenic, which is pretty much weekly right now, he is highly susceptible to bugs, viruses, any type of cold, flu, germ, etc...

I had to make a decision. If it was just allergies and I decide to not go, I miss the chance to hang out with my Dad when he's on an upswing. If it's a cold and I decide to go, it could make him really, really sick. Now the adage, "Better Safe than Sorry" comes to mind in this dilemma. BUT, there are no guarantees how he'll be feeling should I take off to see them in September, October or even next week. When you have MDS, ya live every day fully. I didn't want to miss out on an opportunity.

BUT, the old adage won out. Better Safe than Sorry. We are all bummed that I'm not going, but I'm happy that none of us will worry about his health because of something I inadvertently carried with me into their home that had the potential to make him sicker.

So they just have to tolerate me over the phone until I feel better and can use my Southwest credits to harass them in person!

The Guinea Pig

So Doc Stone said to my Dad "You're an experiment."

Dad's White count, Red count and Hemoglobin were all steady and up again. He needed platelets though, which may be an ongoing process for ever and ever, but hopefully his marrow will start working on that soon.

SO they got platelets in Sterling, which is only 30 miles from their home. They also have a new Chemo schedule. Starting the week of August 18th, Dad will head into Sterling once a week to get Chemo for 10 weeks. Doc Stone thinks this may be easier on his body than the 5 days in a row once a month treatment he's done the last 2 times. They'll see how it's working from there and make any alterations as needed.

The best part of this new schedule is Dad gets to be at home. He gets to hang out with his dog and in his Honey House. He gets to sleep in his own bed. That helps tremendously.

Yesterday, in decidedly better spirits, he said to me "I'm gonna fight this thing with all I've got. I know I've got at least 10 more good years in me."

Just hearing his determination made me smile.

Good Stuff

I called them again yesterday afternoon. Dad was sleeping, but he had been working with my sister in the honey house earlier and had gone into their expansive back-yard garden with my mom to pick some fresh corn to eat for lunch. Yummy!

Sounds like he's getting some strength back! He's probably tired of all the ladies in his life saying "Get up and around, but remember to take it easy so you can have strength to fight the disease!"

The folks are off to Fort Morgan today, after getting a blood draw/test in the AM at the Haxtun Hospital. Doctor Stone travels around the front range of CO so they can meet him closer to their home. It's a little easier on them to not have to drive allll the way to Greeley.

So we'll know more tonight, maybe not everything, but more. Right now, we are cautiously optimistic...again

A breather

Well, Dad is back home again, for 2 days at least. He was scheduled to start his third round of chemo next Monday, but his Doctor, Doctor Stone, is going to check his platelet, white and red cell counts before they schedule anything.

Dad started his second round of chemo on July 14th. He hadn't had any platelets, transfusions or Neupogen shots since the 5th. We all thought that was a good sign, that his marrow was starting to heal and produce more mature blood cells. But the second round of chemo was tough on him. It wormed its way into the nerve cells that he had worked so hard to build back up after the Levaquin killed them last year. He lost most of the strength in his left side. His last day of chemo left him so drained and his muscles so cramped in pain that he had to be admitted to the hospital. That was his 72nd birthday.

I was just ending my blog class and getting ready for a writing brainstorm when my brother called to tell me that he had just helped Mom admit Dad to ER. Thankfully, my parents had been staying in the hospitals "Hospitality Suite", which is a block away, a house set aside for family staying with patients of the oncology lab. Dad was in such pain that he couldn't help but scream everytime the nurses moved his legs. Though he hated the thought of the stuff, the doctors administered Morphine. He was pretty weak and out of it for 5 days or so. But, as my tough old bird of a dad will, he pushed and fought and is back up to walking with his walker for 10 minutes stretches. He's fighting with all he's got. If 72 year old man can fight off this thing, it's my stubborn old Dad.

Last week was a tough week in CA. Aside from hearing the worry in my mothers voice and trying to make my Dad laugh at dirty jokes, while he couldn't even do much more than mumble, I saved a tiny kitten from the street. It had been hit by a car, just a little, but enough to crack it's jaw and make one arm useless. I couldn't handle it, gave it to a nice rescue, but the stress made our 16 yr old Munchy cat sick and made me cry inappropriately for about 3 days straight. My niece was also in residence, I love her, but couldn't spend more than 2 hours with her the entire time due to work, sick kitties and my neurosis. Oh and the vet bills for 2 sick cats added to stress. Today the people doctor gave me a prescription for Xanax. I feel so 1970's house-wife.

So now things are calming down in our house and I spoke to Dad, he actually answered the phone when I called their house. He's happy to be back with his Belle dog and he's much more cohearant now that he's not on morphine or in tremendous pain. Mom just sounds bushed. I wish I could share my xanax with her!

Dad is having blood tests on Wednesday, they we'll find out when/if he gets his 3rd round of chemo. I used to really hate waiting, I still hate it, but, one thing I've learned these past two weeks, you can't guess what's going to happen from one day to the next. All you can do is call home every day, tell your parents a dirty or awful joke and let them know that you love them, a lot.

My Dad has MDS

My Dad has MDS. My Dad was the healthiest 70 year old in the world, he eats veggies from his garden, took walks and worked out with weights, makes awful fart jokes, has a healthy and loving marriage and was even doing concrete work for my brother's Ready-Mix. My Dad is one of the strong guys. Until last Spring. He took the anti-biotic Levaquin and it robbed him of his immediate health and stole the vitality from his very marrow. So now he has MDS, a rare blood disease that has him on chemo one week a month and the rest of the family on edge every day.

I found out about a month ago. My sister called me on a Friday night to say that Dad had been sent to the hospital in Greeley, 250 miles from their home and he had to stay there for a week. At the time, having ‘just MDS’ sounded ok, "it isn't Leukemia" my Mom said, sounding relieved. I did what any self-respecting internet addict would do and Googled the thing, got all kinds of great medical/support info and some useless information (like Carl Sagan had MDS). I called the folks every few days to check in. I planned to fly home to Colorado for the final 2 days of his initial chemo treatment.

Then I got back to Colorado and it hit me. My Dad is sick, really, scarily sick. Ashy grey and so tired he started to cry at one point. I did what I could to help when I was there, buying them gas, taking Mom to lunch at the hospital and shopping for some new clothes and just listening to her. But then I had to leave and I am useless here.

So I thought I'd blog about it, blog about the disease, blog about my Dad, blog about the thoughts on MDS and my Dad that sit in my brain day-to-day. Maybe someday, somebody will find me by Googling MDS and I can entertain or distract them with my rambling.