No Blood on Monday

I was thoroughly convinced that I would be getting a transfusion today, based on the way I feel. I was wrong. That is a good thing because my numbers actually have come up a little. They're still not in the normal range, but we're making progress.

Instead, today I had an ultrasound of my heart done. We're trying to figure out why I'm short of breath and weak and light headed,etc. They want to make sure that one of my chemo drugs didn't cause a delayed problem. Dr K doesn't seem to be too concerned. He thinks that this is radiation effects and my body is just having problems rebounding. We won't have results for at least a couple days, maybe up to a week.

The most frustrating part is that I still feel blah, and they can't tell me why or what to do to feel better any sooner. This patient's patience is running thin!

I now have the Xeloda pills in my possession, but I won't start taking them until next week after one more blood draw. Scary in a way, but necessary.

So that's my current situation. Nothing much to report there, but thought I better update.

Thank you for all the many encouraging phone calls today! I needed to hear all those wonderful voices and it helped me a LOT!! I am soooo fortunate to have the support system that I do. Don't ever, ever think I take any one of you for granted.

Blah

Still feeling like poo these days. My self-diagnosis tells me that I will likely be back in the hospital tomorrow for a blood transfusion again. That would be good and bad. Good, because it means that we know what the problem is. Bad, because it means the Procrit isn't as effective as we had hoped and my marrow is still messed up. But at least if this is still from the anemia then we know the problem. If they check my blood and I'm not anemic, then we have to try to solve a new problem.

It's just so frustrating to spend so much time on the couch! I feel completely useless and it's starting to get to me. Throw in the fact that the steroids are making me weepy and I'm kind of a puddle.

On the upside? I'm still pain-free!!

Just Say No!

I don't know how anyone can possibly become addicted to meds of any kind. Not the type that mess with your head, anyway. This has not been fun or enjoyable at all from day one.

I finally called the doctor's office yesterday and told them I just couldn't take it any more. They took me off the morphine, but left me on the steroids. Even at these low doses my head is still not under my control. I am pain-free, which was the overall goal of this, but I haven't decided if I made a good trade off. I realize the day will eventually come when I don't have a choice on what meds I'm on for pain, but for now these are definitely affecting my "quality of life" and I'm just not ready to be so out of it. I have my Procrit injection at 1:00 and will have them do another evaluation to see what else we can maybe try.

Ow!

The pain I have in my hips/pelvis has been intensifying. I was able to get an appointment squeezed in with Dr. Kumar this afternoon and he has prescribed some pain meds for me. Specifically, I'm going to start on some low dosage morphine, and some low dose steroids. The plan is to take these pills for a week or two and by then we'll have a better idea of whether or not the Procrit is effective in boosting my blood. Then, once I start on the Xeloda, I'll maybe not need these new pain meds.

The morphine could maybe make me a little sleepy for the first day or two, but the steroids could make me hyper. So I'm hoping for even keel, with maybe a little hyper to give me some energy to buzz around this BodyWorks exhibit in Minnesota.

Hopefully I'll be, basically, pain-free the next time I blog in.

Happy Father's Day all you Fathers out there!!

A Gift

My friend, Faye, sent me a most wonderful present last week. She gave me...well..she gave me...ME! Faye took the time to print out every one of my blog entries, along with comments, and assembled them into a 3-ring binder. This is something I have wanted to do for myself, but she gifted me with the end product first. It's wonderful!

I am amazed to go back and see the dates and anguishes and tumor marker numbers and thoughts and feelings of "long ago." As Faye said to me: it's been quite a journey.

THANK YOU FAYE! What a wonderful, perfect surprise!!

I got the jimmy legs!

I think I'm using that Seinfeld reference properly --- ??

What I'm trying to say is that I seem to be dealing with 'restless leg syndrome.' That's a self-diagnosis, however. My legs feel all jittery and weird and I'm losing a lot of sleep because of it. Unfortunately, I don't know if this started right after the Procrit shot or right after the blood transfusion. I do know that I need to talk to someone at the clinic tomorrow though and find out what to do about this. It's making me crazy!

I did not golf on Friday night. (Sorry Hendrikses and Thorns!) What I did do, instead, was take a two and a half hour nap. How's that for being re-energized? Still I haven't noticed a huge improvement from the transfusion.

I did golf this afternoon with Brian and Dave Ludens in a scramble/best ball tournament. We used 4 of my tee shots!! We had a lot of laughs out there.

I hope everyone is rested and relaxed from the weekend, and ready to move in to this new week. It will be a short work week for me as Dominic, KB and I are headed to the Twin Cities. We're specifically going to see the Body World exhibit. It will be quite fascinating to see the inside of the human body without all the blood and gore. Can't wait!

Hoping everyone is well. Please keep those prayers and good thoughts coming my way! I greatly appreciate them...and definitely need them. THANK YOU!

A -

'A' Negative, that is. My blood type. I remember poking my finger in science class in middle school and typing our own blood. I'm sure they don't do THAT anymore...needles, blood, etc. I didn't remember what my blood type was though, so that's an interesting bit of info to tuck away somewhere. Hopefully it's info that's not needed any time in the near future.

I had hoped to bounce on out of the hospital all newly oxygenated and energized. It didn't happen quite that way. I then thought that maybe after a good night's sleep with fresh, new blood coursing through my veins that I would leap tall buildings in a single bound this morning. Nope...not even really doing any puddle jumping. I didn't feel like I was going to tip over after I stood up from weeding last night, and I wasn't all winded after my shower this morning, so those are positives. I think my expectations were just set a little too high.

As the day progresses I'm feeling more worn out again. Time for a nap, I do believe. Not sure if I'll golf tonight or not. May save the energy. It's awfully windy out there anyway, and a bit cooler. I can always meet up with everybody in the clubhouse. We'll see how it goes.

As I watched those two units of blood drip-drip-drip for eight hours yesterday, I felt very fortunate that someone with my blood type had been so generous as to donate their blood for me. I don't know how many of you are donors --- but it's an amazing gift! Something to consider?

"Everyone Knows It's Windy"

Or wind-ed, as is my case. Apparently I am more than just a little bit anemic. I'm quite a bit anemic. Which would explain why I feel so winded so easily doing the simplest things. (phew! I thought I was really just that out of shape!)

So today they gave me a shot of Procrit to help boost my blood and hopefully get it healthy again. Tomorrow I'll be at the hospital all day having a blood transfusion. My hemoglobin is at 8, and it should be more like 13 or 14.

We can't start the Xeloda until we get this a little better under control. I'll receive Procrit shots once a week for three more weeks and then check back with Dr K to see how we've done. Hopefully there's only this one transfusion that will be required.

With all this brand new, oxygenated blood I should be able to hit the green with no problem on Friday!!

I'll get back to you when I'm feeling less light-headed...

Happy Birthday Mom!!

979 - 922 - 1036

No, that's not a phone number. It's the string of my last three tumor marker numbers. I've gone over the thousand mark for the first time.

The 979 went down 57 points to the 922, but now the 1036 is 57 points higher than the 979. I've got no good math for this one.

It also appears that I am anemic, so we may have to do a little something extra to fix that situation. It sure explains why my energy level isn't improving as fast as I'd like. Although I managed quite nicely on the golf course last Friday. (That is to say, I golfed all nine holes...we don't need to talk about my quality (?) of play!)

I'll see Dr S and Dr K tomorrow and we'll set a new plan in motion. Stay tuned for further updates...

And now, a request for some prayers for peace in the hearts of my brother and his wife who lost their beloved dog, Jake, this morning. He too was a member of the Breiter Family Cancer Survivor Group. It can all be summed up in three words from Jerry: "empty" and "cancer sucks."

Hug your loved ones...humans and animals, alike.

Let's Call it a Success

Last Thursday (where did this week go?!) Brian and I attended the support group with some trepidation. As we pulled up we noticed it was primarily older folks walking in. We still thought that might be ok though. As we approached the door we saw a woman we know and she said to Brian "It's nice to see you here! My husband is home reading the paper." That comment, along with the fact that the majority of the people there had a "support" person with them, made Brian feel a little more comfortable I think. And not one tear was shed by anyone in the room, so that helped too! I think it was a good first meeting, and we plan to attend again.

We had a great, long holiday weekend. And now that it's Thursday again, I'm looking forward to another good weekend! I'm a little envious of my parents and my sister, Sue, who will be in Oregon for the birthday and graduation festivities! But we'll have our own fun around here, to be sure.

Monday I'll have my blood drawn so that we'll have all test results by my Wed appointments. I'll meet with both Dr S and Dr K, and then have my infusion on Wednesday. I think we're all on pins and needles waiting to see what the tumor marker has done this month. The aches I have lead me to think it may have gone up again...but I'm not thoroughly convinced that everything I feel is in my bones. Hopefully they can decipher all the pangs and pains and twinges. It could just still be leftover sensations from the radiation and the laying around and the infection and all of that nastiness. So, yes, I am extremely curious to get that number!

Aside from all of that business, life is treating me well. Depending on the weather, I will swing my first golf club of the season tomorrow evening. I'll let you know how that goes. Even if I can't golf all nine holes, it will be great fun to be on the course and enjoying time with friends and family.

LOVING the sunshine! Hope it's "brighter" where you are!