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!

Let's Try This Again

Tonight, Brian and I are going to attempt another cancer support group. This will be a first for Brian, and I haven't been to one since my first bad experience. So why are we trying this? Well, in the first place, this one is through the Vince Lombardi Cancer Clinic (VLCC) so it's my "home turf" and I think that may make a difference. Also, with Brian by my side it might be a little easier to have him there to lean on if the need arises.

I'm kind of looking forward to this. VLCC hasn't had a support group, that I know of, for a little while...this is a re-start for them. So tonight will be more of a "planning session" where we can give some input as to what our needs are and what we might like to see happen. And it's quite possible that I will recognize some of the other attendees.

Mood-wise, I'm feeling pretty good these days. My energy is slowly rebounding and my naps have been cut back to only about 20 minutes per day. Sitting at Brian's softball game last night left me achy because of the cold wind, so I feel a bit of that today. But not too bad. I have some other pains that don't seem to want to go away without the aid of some Ibuprofin, but I suppose that's to be expected.

The very best news that I have to report is that my brother, Dave, is D-O-N-E with his chemo, as of yesterday!! What a huge relief for him and his wife, Kate. He will still have three weeks of radiation yet, but I think that will be a cake-walk for him, compared to what he's been through with the chemo. I am just so thrilled for him because I know what it feels like to walk out of the clinic after that last treatment.

Looks like we have a fun and busy weekend lined up for ourselves. We're going to travel a bit, relax at home a bit, and watch Dominic march in the parade on Monday. Let the holiday weekend begin!!

Safe travels to those of you who are traveling; happy times with family and/or friends; healthy relaxation to all!

I'm Feeling Better Today...

...until someone asks me if I'm feeling better today. Then I feel all weepy again! It's so strange. But as the day progresses, my mood is improving more and more.

Big K

I saw Dr. Kumar yesterday. First time in over two months. Now that I'm done with the radiation I kind of flip back to the other side of the clinic and see the folks over there instead.

Dr K told me that he was a little concerned when he saw that my tumor marker number had gone so high. But he was relieved to see the drop this past month. And he says he feels like we will see another drop this month. I hope he's right! June 7th is my next Zometa infusion, so I will have my next tumor marker results by then. If the number actually does go down again we may hold off on the Xeloda for "a while." Because of my age he doesn't want to exhaust all treatment options too soon. So the longer we can hold off with these chemo pills, and still see things changing in a positive direction, the better off I'll be.

I like Dr K's approach to the Xeloda. He prefers to start with lower doses and steadily increase how much I'm taking until we find my threshold for when the worst of the side effects kick in. Then we know what dosage is best for me. This sounds more comfortable and easier to monitor---rather than going through all the potential nasty side effects.

Because I don't have any new symptoms, and the ones I do have are consistent with the cancer and the radiation I've received, Dr K is confident that the cancer is still bone-only. Honestly, I don't know that it had occurred to me that it might NOT still be bone-only. I just thought that those increased numbers signaled more activity in the bones...which they did, but it still made me pause.

Is that why I've had such a bad day today? Even though my appointment went well, I think it still brought some things to the surface. The radiation has beat up my bone marrow pretty good, which is why I have no energy. That should improve over the next couple of weeks. I'm sure that being a lump on the couch all these weeks hasn't helped my mood either. So it was a bad mental health day for me. But Dominic is home, and Brian will be here soon, and I hope to shake this cloud and move into a nice evening and a happy weekend.

That's the latest update from here. I'll be better tomorrow...

Let the sun shine!!

Heinz 57

57 is the change in my tumor marker number for the past month. 57 is a relatively small number compared to the leaps and bounds that thing has been taking the past several months. So 57 is a good number, right?!

Actually...57 is an AWESOME number, because my number DROPPED 57 points!!! Can you believe it?!! And if you really start messing with the numbers then we've gained probably 357 points in the battle...because not only did it not go up another 300 points, but it dropped 57, for a net gain of 357. (ok, I'm stretching it a bit here...but work with me!)

The weather is still cold, and rainy, and super windy, and all-around crappy today---but I just don't care! Last day of radiation, my number is down a bit...It's a BEAUTIFUL day in my neighborhood!

Happy Friday All!

38 Down...

...2 to Go!

It is a cold, wet, windy, miserable day here today. And yet, I feel pretty darn good! I had my bone strengthener yesterday which often leaves me with a little extra pain in my joints. The cold, wet weather usually has the same effect, but my discomfort is minimal today. Yes, I still feel it, but compared to how I was feeling for a couple of weeks there, this is nothing!

I will finish up my radiation tomorrow. I told the techs yesterday I won't know what to do with myself. I've seen them every weekday since March 23rd. That's seven weeks! Dare I say, we're friends now, not just patient/caregiver. We have a lot of laughs in there. I will miss that...but NOT the radiation.

Depending on yesterday's lab results, we'll start the Xeloda either next week or the week after. The numbers they're looking at are just barely in the normal range and they don't want to start the chemo pills until my blood has had a chance to rebound a little bit. I don't know if they tested my tumor marker or not. If they did, I'll post the number here later today or tomorrow. (Again, that's more for my reference than for yours.)

My energy level is still pretty low, but 38 radiation treatments will do that to a person. At least my mood is high! A new, odd pain that I had earlier this week has all but gone away on its own. I'm thankful for that. My first thought was "appendix" and I really don't need to deal with something like that now too!

My brother, Dave, has had a very rough week and wasn't able to get his final chemo yesterday. It's delayed until a complication with his lungs is cleared up. I think he's breathing a little better each day though. I told him I could completely relate to what he's going through. I remember sobbing in the chemo chair back in 2001 when they delayed my final chemo. You get to a point where enough is enough and they've teased you with this final date...and then they burst your bubble. Be tough, Dave! Your "normal" will return!!

Happy Mother's Day to all of the wonderful Mothers out there; especially, my own dear Mom!!! I hope the sun decides to shine on Sunday!

"Pain Flares"

That's what I have...Pain Flares. The discomfort I feel now may have been brought on by any number of things...long ride in the car, super bumpy highway in southern Minnesota, holding Joey just a little too long, or just because the cancer felt it was time to shake things up a bit. I had intense pain on my right side yesterday (and Sunday). So now there's been an alteration in the approach to pain management. Instead of waiting until I feel some discomfort to pop an Ibuprofin or two, I am now on a regular schedule of taking larger doses throughout the day. The pain on my right seems to be under control, but the back spasms are continuing. It may take a little longer to figure those out.

I am officially done with the antibiotics now, so hopefully my tummy will get back to normal. Various side effects with those pills that I won't miss.

I am a much happier girl today than I was yesterday!

Also, for those of you who aren't aware...I have completed the radiation on my left side and have nine more to go on my right side. The date is still up in the air as to when we'll start the Xeloda, but it should be sometime this month.

Smile!

The sun is shining and I feel human today!
Smile Large!!

Hanging in There

Thought I should put out an update of my current situation...

I still don't feel all that great. Yesterday, the doctor prescribed another 7 days worth of antibiotics, at the higher dosage, so we can knock this thing out of my system. We need to have the infection gone for obvious reasons, but also so we can start the Xeloda in a couple of weeks.

To steal my friend, Sheryl's line: I feel like a "waste of skin" these days. Not much happening besides couch time. I am working and radiating and got out of the house a bit this past weekend. I just wish I had more energy to be productive in the evening. I'm sure Brian and Dominic are both tired of seeing me under the blanket in the living room.

I do feel a heck of a lot better than last week...but I'd rather feel like me again!

What's a Body to Do?

Talk about one thing after another...

The antibiotics that I was prescribed were NOT well tolerated by me. I was sick to my stomach all day yesterday and so the doctor took me off of both pills. That was a good thing because it meant no more "orange" in my world, and no more upset tummy. Today I was able to eat and keep it all down. There were a couple of options as to what to do, but it was decided to just not prescribe anything different at that time in hopes that I had gotten enough in my system to clear up the infection. I was ok with that because I didn't like the meds.

Well...this morning I woke up with terrible back pains. I couldn't decide if it was a result of lying around for so many days and my back just hurt from that, or if it was related to this infection. As the day progressed and the pain remained steady (even the Advil didn't take the edge off) I realized this was probably not a good sign. When I went in for radiation I mentioned it to the techs. They felt that I should definitely see the nurse practitioner since the doc was out.

What I learned is this: when a urinalysis is done there is a "sensitivity" test done that tells what drugs will be effective for my own specific case. The nurse was looking for this form, but it wasn't in my file. The lab never sent it. So it turns out that of the dozen or so options of what they could have prescribed, the doc (through no fault of his own) presribed one of only two non-effective drugs! So not only was there absolutely no reason for me to have felt so crummy since Saturday!!...but this also means that I was, essentially, not being treated at all!!

They started me on a new drug today and the hope now is that the infection has not spread over the course of this past week. Come on...what are the chances it hasn't?! The pain seems to have worsened throughout the day with little back spasms going on. It's just so messed up!

My mood is greatly improved today since I'm not nauseous, but I can't seem to find a comfortable position right now. I hope these drugs kick in quickly.

Thank you for all the warm and kind comments, calls, and messages after my last post. I always appreciate it when I check my blog and see a reply!

Trying to take it all in stride

I am 16/20 of the way done with the radiation on my left side. I have, mostly, come through it ok...right up to this week. For the most part I feel fine, but now there are residual side effects with which I am dealing.

Generally, when I have a procedure done or I take a medication the side effects are not visible. In this case, there may be some visual changes. I have developed a bladder infection, most likely related to the small area of my bladder and/or intestines that have just barely been touched by the radiation. While my white and red blood cell counts look good, I am still, apparently, subject to infection. They put me on two different medications to clear this up. One is an analgesic that can cause a discoloring of my skin, my tears, and my perspiration (including staining my clothes). In this day and age don't you think they could come up with something a little less 'obvious?!' So now I will have to wear my glasses for two weeks and wear mostly dark clothes. Ugh!

On top of all of that unpleasantness, my tumor marker has jumped again...now to 979. I had prepared myself for a number right around 1000 so I wasn't totatlly blown away. But it's still disturbing, to say the least. In order that we can more quickly get started on the Xeloda, we are going to start radiating my right side on Monday (along with the left for those remaining four days).

It's very beneficial to me that the sun is shining and the skies are blue. And the fact that this is Easter weekend and we are celebrating LIFE and the AFTERLIFE. I guess you could say this is relatively good timing.

I wish all of you a blessed Easter. I hope everyone is able to be with loved ones and spread the joy of the day with hugs and laughter. Alleluiah!