Not So Good and Good News

Dad "popped a few rivets" as he said to me. He had a Sternal re-wiring with a plate and is back in ICU, still intubated for a bit to get some good rest. They have to find that fine line of keeping his lungs clear but prevent further complications. He'll be 80 this year and has some other health issues. Say a prayer okay?

AND NOW FOR SOMETHING COMPLETELY DIFFERENT

So I'm washing my hair the other day and it feels weird. I made a discovery.

I am growing a new crop of hair.

Shhhhhhhh ! Don't scare them. And they're curls ! Don't know how this will go, but it's cute as heck. Does this mean no more perms? Thing is, the old hairs are still straight. Will they continue to come in straight? This could be verrrrry innnnnteresting!

I got Bobby to get the camera and take some Macros. The two "sparse" pictures are near my incision which is where the radiation was focused. As you look farther away from there, more new hair is mixed in hair that held on for dear life. There is only straight tiny stuff in one area which I think was clipped before surgery (they don't shave anymore). Dr Grossman said it may not come back very well there.

Okay.

Have a look see - you have to blow them up to really appreciate their beauty.

Add My Dad

Now my Dad is having Coronary Bypass surgery. It started innocently enough. After being short of breath when walking the halls of Hopkins recently, he saw his cardiologist. One thing quickly led to another and he was in the hospital. It's been delayed twice already, once to add a left carotid endarterectomy and again (for reasons unknown) over the weekend. But they're keeping him admitted.

My family knows how to throw an O.R. party. When I got to my Dad's room today, nine assorted relatives greeted me, backed out into the hallway. I couldn't even get to him there was so much love in his room. As a former hospital worker, that made me wince. But I don't work there and nobody knows me so pthhhhhhhhdt ! It reminded me of my first Craniotomy. I had thirteen people in the waiting room. People just kept coming. I was so embarrassed. It was my hospital. I was making a spectacle of myself.

Later I realized it wasn't my show.

Not to be morbid, but it's kinda like funerals. People need to gather. They need to protect each other. And my Dad has twelve brothers and sisters plus their spouses, kids, and his wife's family who love him very much.

We're gonna need a bigger room.

So add my Dad to your list tonight. He and his wife will have to cancel the cruise in May and he may have to re-think that cross-country drive in June, but with a gathering of the clan and a few prayers from you guys ~ he'll get by alright.

Legs

My legs may be weak, but they are smoother than a baby's butt. They have absolutely no hair on them. I don't know why. I have hair on my arms and weird steroid hair on my face, but not one on my legs.

Just thought I'd share this for those ladies who shaved this morning.

:-P

Oral Chemo

I'm so blessed to be taking Temodar by mouth once a day at night for just five days a month. Likewise the Anzemet for nausea works like a charm and I sleep like a hibernating bear in spite of the higher dose.

I have a young friend at PeaceandLove who isn't so lucky and is feeling very sick right now. She doesn't even have cancer but is taking some nasty treatment drugs for severe aplastic anemia. At twelve years old I think she's pretty brave and I admire her. I've been trying to think of the perfect gift for her but I'm so out of touch with what twelve year old girls like these days. I think I've got it but need to explore all the options it has . . . and check with her Mom.

Got my two month MRI last week. I got to ride in the Cadillac which has a large bore. Comfy! The results were way better than acceptable. Blah blah blah stable blah blah blah no midline shift blah blah no abnormal enhancement blah blah blah essentially stable. So . . . I'm good to go. And my Oncologist (grinning from his little ear to little ear) and I made a plan for decreasing the steroid once again after this round of Chemo. Steroid every other day. This should kick start my adrenal glands into working on their own again he says. Hey, I gotta go with the Hopkins guy - I pay him the big bucks. He says I'll fell lousy on the off days. We'll see.

I'm not your average cancer patient. :)

My body continues to maintain strength this week. Even balance is a bit better I think. Yaaaay PT. I haven't experienced the big Whump! of fatigue that last month's chemo hit me with. I think the further away from my radiation I am helps that part. Plus I have to eat right, drink fluids and get enough sleep. I work out most mornings and sometimes in the middle of the night I limber up a bit too. Weekends are when I become a slacker sometimes. Sleeping late has it's drawbacks when Bobby makes French Toast for breakfast occasionally and I just have skip exercise to go out and eat it while it's hot . . .

Did I say that was a drawback?

I Saw Esau Sittin' on a See Saw

Seems I'm always up and down on this blog.

I'm on the smallest dose of steroid possible. Just waiting for the word that I can come off. Breathlessly awaiting those three little words "discontinue the Decadron". I just hope I'm not putting too much on that fact. Coming off will not fix everything going on with me Lord knows. I've been blaming the steroids for a lot lately. Let's hope they are guilty of some things anyway. I could use a little sunshine. Some symptoms could just disappear. Maybe a few. Yeah.

Last time I wrote I had a tough time getting out of my car. That happened one more time again at Physical Therapy, the only place I drive to alone. I was in a hurry because I had to wait for a parking spot. Thank heavens they could come out to give me a hand with that uncooperative foot. I've got them on speed dial now for insurance - so I don't need help again.

Good grief.

But in general Therapy is pretty good. I've been inspired to work hard again since last time here. The right leg is a bit stronger. Again. And I keep working the program and fighting the good fight. One of the important things in this phase of my treatment is to not slide backwards. Most days I'm still getting a lot of sleep but my stamina when walking IS improving. It's almost imperceptible but it's there. I can walk in to therapy and I'm not huffing and puffing and grabbing something for stability so I don't fall down. I can come out in the morning and go straight to the kitchen for breakfast instead of stopping to rest and pant in the living room for a while. I'm still bushed when I do sit down to eat and my Mini Wheats get soggy before I can get a spoonful, but I'll take what progress I can.

I'm finding muscles I forgot I had. Monday I found my butt. I know. I know. Hard to lose one as big as mine, but I couldn't clench my cheeks together. (the things you don't know until your therapist says "okay now try this . . .") I could do left then right but not together at first. Then after a while . . . Taa Daa! Both cheeks. Bouncy bouncy. How she dreams up this stuff I'll never know, but anything to build up these weak muscles of mine. Now I'm sitting here at the computer making the tightest buns in Howard County (I know scary visual). And my thighs! I got a blue rubber kick ball at the Target' for thigh strength. Guess where that goes? ;^P

Yea team!

Oh, sometimes I still have my weak moments for totally unknown reasons. Walking to the car most days is fine, but if I go down to the bathroom then balance to put my coat on first . . . then go down the stairs on those wobbly legs . . . Woosh! And brushing my teeth always makes me weak in the knees and I gotta grab the wall to walk. It's only about 10 steps from sink to bed then plop down breathless and pant for 5 minutes or so with my heart pounding. I'm still afraid of restaurant and other unknown chairs. Can't get up from them - too low or unstable. Theater seats? Wanna hear a horror story? And stairs. Stairs? What are those?

Oh you mean the 4 inch steps Bobby built for me up to our front porch? The porch he raised to the level of our front door so I can get in my own house? Those I can handle.

He loves me.

Yup. Up and down. But I keep on focusing on those ups. There have been some family and friend health problems that have gotten me to take a step awaaaaay from my own issues.

• My stepbrother had a liver transplant last week. He's doing well at Hopkins I hear. Whew!
  
• My cousin is having a serious surgery Thursday (probably going to go well, but still . . .)
• A friend who's dealing with colon cancer is having his reversal surgery in two weeks. This should be a joyous occasion but no surgery is fun and the first one truly sucked for him.
  
• A sweet knitting friend had to make an emergency flight to Ireland to be with her 12 year old daughter. She had an acute bleeding episode, thought at first to be Leukemia. They're flying back Thursday for treatment of Aplastic Anemia at Hopkins. It's gonna be a long, long haul for them.

Yup. I'm doing O-Kay for now. Please say a prayer for each of them though. Right now please.

Whump

This month's increased dose of chemo for the first five days of the month hit me like a ton of bricks fatigue wise. I slept 11 hours one day. ELEVEN. Okay, I had potty breaks, but my body needed that much sleep. I could have stayed in bed all day. I had to drag myself out finally for fear of my blood sugar crashing and a headache. I keep some crackers and water in the bedroom, but Bonnie does not live by crackers alone.

The fatigue has slid my PT back several notches. No ambition whatsoever. No inspiration from my John for the last ten days or so. I guess he knows what he's doing and was leaving me to rest a bit. Oddly, a series of circumstances with my therapist gave me no PT appointments in March. Until today.

Today was . . . interesting.

I got out to the car and had a little trouble getting my braced foot into the car but managed finally. Bobby's been doing all the driving, so I'm just tired and out of practice - right? So I get to therapy and get stuck half-way out of the car. I was too weak to drag my bloody right foot out of the car. I couldn't even reach behind me to pick it up by the steel and leather circle at the top because my leg was twisted. Luckily I had my purse in my hand (something I NEVER do) and called them inside. My therapist came out and picked up the brace for me and I landed outside without incident. Really, it was scary but went smoothly.

Sheesh.

She and I tried the in and out of the car again and worked on a few possible solutions. Naturally we worried about me getting home and getting stuck again. I stayed 2 hours until Bobby got off work and could "spot me" getting out at home. We figured it out and will practice again tomorrow. I just need to put my left foot a little further out than I used to. I was stronger after PT too. Amazing how far a little inspiration from my favorite therapist went today. I conjured up Mr. John's face a few times too.

I'm back in the groove.

Good Night Moon

They're decreasing the steroids finally and the big round moon face is slipping away. The dose has gone down twice since I last wrote. I woke up one morning and I could see my ears. The decrease in my facial swelling is the most welcome effect so far though.

I can breathe.

The pressure from the swelling due to the steroid face had collapsed my nasal passages so much I had been wearing Breath Right strips during the day there for a while. They worked rather well and were hardly noticeable - Safeway brand are clear and lasted at least two days. You know, they might keep folks off some of that oxygen if they could just get what the health care pros call "room air" in their nostrils! It was the worst at night when gravity took everything lateral. It would take me a while to position so I could slide my cheeks to open up.

I'm beginning to look a bit more like me around the eyes and mouth, and my facial muscles aren't so rock hard. I hope I don't get facial stretch marks. My belly already looks like a postpartum nightmare. Still, being able to fit into more than five dresses is very attractive to me. I had swelled up so much the wardrobe was severely limited. Or hadn't y'all noticed? And I've got all new lingerie to celebrate the return of my(ahem) normal womanly curves. Woo Hoo!

I know, TMI.

My hands are waaaaay better too. Knitting it drastically improved and I've only had two episodes of finger cramping - one while eating. You have no idea how happy this makes me. I'm not fully believing in a full cure yet. There could be another reason for the wonky fingers. Have I turned into a pessimist?

Today marks the fifth night of my oral March chemo so the second month is done. This is just too easy. The dose has been almost quadrupled but it had no real effect on me. Well almost. The first night back in February I woke up once and after about two minutes I felt a bit "sick". Not really nauseous, but like I had the flu. Then I fell asleep again right away. I haven't had that since. I can barely walk to my own bathroom and standing still is a nightmare but as long as I'm sitting down I feel great. I have the love and support of my husband, a steady income, the best doctors in the world, an amazing insurance coverage so I'm not constantly on the phone like so many in cancer treatment, and I go for one blood test a week. I have a friend on IV chemo ::waving to John:: whose body effects have made him soooo sick. And he has an invasive test every week it seems. And he's looking at more surgery. And he has had crap at work and with his insurance company while we're at it.

Talk about feeling guilty.