Round 3

We got to short stay at 8:30 this am for a 10:00 time with the radiologist. I was awake the whole time, listened to all the chit-chat that the docs do when you're under, and got out of the hospital just before noon. Since I hadn't had anything to eat since supper last night, I was HUNGRY! This hospital's dining room is in a windowless basement, so we went out to eat, and got back just in time for my 1:00 chemo session that lasted until 3:50 PM. They start with a CBC, and even though I'd asked 3 different people for a copy of the blood test, I ended up leaving the place without it! One nurse did tell me that my HGB was 10 and HCT was 31, so I got a shot of neupogen to build them up. Doc said I was anemic. I was more concerned about the platelets, but before the surgery, the hospital nurses tested for clotting, and I passed. Evidently they were concerned, too. I never did get to see what they ended up being. Oh well. Maybe next week I can pop in there and get it when I'm feeling better, and they're moved in to their new digs.

All in all, I got a port -a-cath put in near my right collarbone, it had its maiden tryout without much of a hitch, we got through the long day, and I'm ready to down some tylenol and hit the hay.

The Night Before Port

Twas the night before port, and all through the house,
Not a creature was stirring...
Not even a mouse.

No, I'm not getting the rituxan...darn! But I just got done reading John Wagner's blog and wishing I could get some mouse ears! lol John is a fellow CLL'er who's going through chemo right now for his CLL. We are both using one of the same drugs, cytoxan. But his CLL protocol also calls for high dose steroids and rituxan.

CLL stands for Chronic Lymphocytic Leukemia. Unlike breast cancer, there's no cure, and for some people it becomes aggressive and causes some painful and/or dangerous symptoms that need to be treated. Otherwise you just watch and wait. John's at one of those stages where he's got to knock back the dragon for awhile. And this is his first time at it. He'll probably use this protocol again and again as long as it works for him. He's saving the "big guns" for later when these guns quit being effective, or don't hold the remission as long. None of this is really a picnic. Some of the toxic drugs can destroy your immune system so much that other opportunistic infections run rampant. (like shingles from childhood chicken pox, or Epstein Barr virus, etc.) Thankfully, cytoxan isn't the worst offender on the list. In my case, the cytoxan is lowering my CLL peripheral blood counts while still killing the breast cancer. It could be helping, but I wasn't having any problem with my CLL. It had never become aggressive. In fact, it had even been coming down with my use of green tea.



It was so good to run into some dear friends today. I'd met them about 7 years ago in a Leadership Institute for the Spokane Alliance. They've had a great influence on me. Unfortunately they had to move out of state a few years ago for work. I didn't know that they had retired and returned to the area 3 months ago. They said that their church has been praying for me. It really warms my heart to know that. I've been blessed to have all sorts of denominations including me in their prayer lists. I know collectively that all your prayers have helped me get this far pretty unscathed. Thank you. God Bless All of You!

When I was 10 years old, my father needed "X-Ray therapy" every day for 3 months. The little local grocery store had a sign up list for volunteers to drive my dad the 180 miles round trip. Talk about community. That's what I'm feeling now, and I want you all to know how much I appreciate your kind thoughts. I know you're there.

Everyone's pretty quiet around here. I have to be at short stay @ 8:30 AM. Fred will be taking me and staying with me all day. Then at 1:00, I get another round of chemo, only this time, they'll be using my new port. I won't say I'm not apprehensive.

Except for being wiped out every so often, and having to take some naps, I'm doing really good. Oh, and I forget a lot, but have taken to writing EVERYTHING down on a list. (Don't ask me where that LIST is, though!) I also need to set the timer to remind me that I need to check the list, or the stove, or to let the dog back in...things like that.

Goodnight.

Hair Today, Gone......

It's gone.

Bits and Pieces

Mary and Kathy drove over from Seattle area this weekend. They proceeded to do some "cleaning." They're really trying to get me to part with most of my "stuff." Funny thing is that I thought I was doing quite well in that area compared to Fred. Now, there's the packrat! I do appreciate the job they did in my bathroom, though. Washed down the walls, etc. It looks and smells so clean and uncluttered!

We went to the Black Angus Saturday night to help celebrate some good friends' 41st anniversary. It was all very nice. Fred was so impressed by my driving TO it, that he insisted that he drive on the way home! OK, so I had left my glasses at home. And I really need them once the sun starts going down. It also didn't help when the R/R arms started coming down and the ding, ding, dinging started just as I was driving over the tracks!

I really don't like to be gone from home for very long. I get so tired at the most inopportune times. But today, I will be having breakfast w/some friends and plan to pick up some head coverings afterwards. Then I'll need to drop off some papers at my doc's that I should have given him Thursday--which I forgot. Chemo brain strikes again.

I had such a thick head of hair (or is that "thick-headed?") that I'm still shedding. I find that using one of those 3-M tape lint remover helps a lot, but it's never done. When you think you've got 'em all, there's more where that came from. It just doesn't seem to ever take a break--washing my hair is so discouraging. However, there's still more on my head than in the drain or stuck to my wet hands. Good news is there's been no nausea to report, and the bone pain and headaches are very managable with tylenol.

With the exception of the fatigue, it's pretty hard to imagine that I'm supposed to be sick! I'm just so grateful that I don't have to be "working." I appreciate all the prayers, thoughts, good wishes, etc., that have been keeping me afloat.

Thank you.

March 16, 2006....Chemo Day #2

I was just a basket case yesterday—all day. So when Debbie spent what seemed like a half hour trying to find a vein, all that while having a very tight, painful tourniquet on my arm, I just lost it. It didn’t help that I was at one end of the room and Fred with my bag of kleenix was at the other end. She had to go pretty deep and got it on the first try. That part didn’t hurt. It was the tourniquet and anticipation that got to me. All I wanted to do was to make all this go away, or at least let ME get away from there. I wasn’t looking forward to more poison in the veins. So there I was on the lounge chair with an empty syringe sticking out of my arm, shaking, sobbing, and trying to hide my face from the others in the room.

Before the syringe is put in place, they take a couple tumblers (they call them vials) of blood, then shoot salt water into the line before sticking that syringe at the end to close it off. She let me feel my arm while shooting in the salt water. You could actually feel it gurgling into the vein!

After that I had to wait to see the doctor. He was so excited at how small the tumor had shrunk. Said he’d never had one shrink that fast with just one round of chemo. So I suggested, “Then, let’s skip the rest of the chemos and get on with the surgery!” He wouldn’t see it, and he assured me that the effects won’t be any worse than my first time around—except for the fatigue. Plus he seemed pretty tickled that I had no nausea—like I was his first patient ever who didn’t throw up! It just means I don’t get to try the “medical marijuana!” Bummer! ….as in Chris Tovani.

So back to the infusion room, only this time Fred asked if I could take the empty recliner next to him so we could actually hear each other. By this time, there were only 2 other patients in the room, and they both escaped shortly after our reappearance.

The other two nurses were home sick yesterday, so Debbie was alone, and SHE was wearing a mask because she felt she was coming down with something. She started a small bag of KYTRIL, a middle sized bag of saline solution, and a giant sized bag of cytoxan. She then took off her regular rubber gloves and put on some special acid resistant heavy duty purple rubber gloves. It’s required for certain chemos. (Wouldn’t want to get any of that on your skin, now would we?—just shoot it into the veins!) She brought out 3 horse sized syringes full of this red, caustic solution and pushed them into another opening in the IV line. That was the Adriamycin. When that and all the medicine bags are empty, Debbie disconnected me, shot me in the tummy with Neulasta, and sent me on my way.

The Kytril is for nausea; cytoxan and adriamycin are the anti-cancer drugs; and the neulasta is to jump start the bone marrow to make new reds, whites, and platelets that the cytoxan and adriamycin have just destroyed. It’s the neulasta that causes the excruciating bone pain and headaches.

Yesterday’s difficulties in vein finding (and last week’s, also) made me decide to go the port route. So the morning of March 29th, a radiologist will install a permanent port in my chest. It would be so easy then for them to get blood and give the chemo. It’d be different if they could just use the vein in the elbow. But that area just can’t be used to deliver the caustic stuff. My inside elbow already has so many tracks from the last 7 years. I really need to preserve its integrity for simple blood draws, now that the left arm is considered useless for any of that kind of stuff. That was another reason I got upset. I realize that some doors slam shut after you cross certain thresholds, and I just don’t know if I want to cross this one.

WBC – 19.9
Lymphs – 8.8
Neuts – 9.7
PLT – 162
RBC – 3.85
HGB – 12.1

I still have most of my hair, but I am shedding. I actually thought it’d be all on my pillow this morning. But no such luck. Yesterday there were 16, and today 20. However, when I run my fingers through my hair, there’s usually 4 or 5 that come with them.

Day 13

My blood counts on Monday were: WBC-23.2; Absolute Lymphs-10.5; Neuts-11.3; Platelets-235. The neuts really went up. Of course the lymphs are at their lowest level since my CLL diagnosis in February of 1999. Platelets are also at an all-time low, but still within a decent range. I’ve got a few sore spots around my neck. Plus there’s a goofy sore line from my underarm where they did the sentinel node biopsy that runs down the inside of my arm to my thumb joint. Every morning, the incision area becomes hard and swells up to the size of an egg. A bit of light massaging seems to bring that down. I believe it’s a buildup of lymph.

I’m actually feeling fine right now. I’ve been on medical leave since March 6th mainly because I need to not be in a situation where I could pick up whatever is out there. The kids I work with are pretty fragile themselves, and they seem to catch everything and bring it to class. I’ve also pulled myself out of this year’s collective bargaining, and other union activities such as next week’s state representative assembly in Tacoma. I especially miss my Spokane Alliance work, but they understand I’m there for them in spirit. I really need this blessed time of reduced stress to take care of me. So now I just referee the dog and cat fights in our house. Of course, I’m sweating my next chemo go-round tomorrow. Our daughters are going to be here this weekend—maybe taking care of Mom and Dad.

Every first and third Wednesdays my “Bosom Buddies” support group meets. I’ve been to 2 meetings so far. These buddies have been invaluable. They’re all so willing to share, answer questions, and reassure us newbies that we’ll get through this. We had homemade ice cream, brownies, and cinnamon rolls tonight. Remind me not to eat supper before going there. I picked up a couple head coverings. Some are quite cute, but on me, cute doesn’t exist. I also got the names and addresses of places to go for wigs that may be free or very inexpensive. They swear I’m going to wake up tomorrow morning without most of my hair. Gee, I wonder what would happen if I stayed up tonight? ;-)

Be well,
Margaret

Goodbye Dana and Kirby

Right now I'm feeling pretty good. Been getting up at 5 AM, staying up till 7ish, then a 2 1/2 hour nap. A morning shower really makes me energized. My headache has been gone both yesterday and today. That was something. Felt like an awl poked into my head to just behind the temple, then every so often some devilish, invisible HUGE no-see-em would fly by and hit the end of the awl with a hammer!

Been thinking about Dana Reeve and Kirby Puckett. Dana was amazing in how she stood by Christopher Reeve. I'm not sure I'd have had that kind of strength and devotion to pull it off with such grace. And now their son has to be without BOTH parents. This is almost unimaginable!

Kirby? Well, I've been to only one major league baseball game in my life. It was in the old Seattle Kingdome. And although the rest of the family was there to see Ken Griffey Jr. tie the record for consecutive games with a hit, I was all excited because Kirby was going to be there! I'm not the most informed sports fan, (I leave that up to my son-in-law) so that whole experience was very interesting to me. We sat down the 3rd baseline, where we could almost touch the pitchers coming out of their bullpen. I also noticed some tall really UGLY guy who came out to warm up. And he looked right AT me! I never knew that pitchers could be so tall. I mean, why wasn't this guy playing basketball? But man, was he ugly!

Anyway, Kirby did not disappoint me! He hustled out there in the field and caught every fly and grounder that came to him. He was just so cute when he batted, too. There was just something about him. A sort of joy at just being able to play the game. I heard his old coach saying that he and Kirby knew just how popular he was in the Upper Midwest by the number of dogs named Kirby at that time. I know he was well regarded in the Twin Cities for his charitable works, and that's how I intend to remember the man.

Godspeed to you, Dana and Kirby!

Day 5

I have not had any nausea. (Of course I'd taken the anti-nausea pills the first 3 days.) What I do have is one heck of a headache ever since the toxins were injected into my vein. Talk about fatigue and achy bones! Also, one minute I'll be so hot, then the next, just plain chilled and shivery. Can this be what it's like to get the flu? This tough bird's never really had the flu before. Oh, and I have a runny nose. I did not go to school today because of the "crud." I'm afraid I'm past the stage of being able to fight off things.

The past 2 days, Fred has dragged me out for walks in our "park." When we bought these 30 acres 12 years ago, our daughter spent a whole summer thinning the trees as part of a forest stewardship program and also to earn money for her college. Now it looks like a park. It's so quiet and peaceful in the back where we also keep the horses and mules. Both days we saw the white-tailed deer. There's at least 5 of them. I really enjoyed the walks, and have to do them every day with our dogs, but the last hill back to the house can be a bit of a tussle. And it's just a gentle rise!

Last night I had some huge lymph nodes pop up in my neck! Is that the CLL cells trying to get away from the cytoxan? I've been drinking water--hope I'm flushing that stuff out! I'm wondering if the cytoxan will be simply attacking my CLL while the Adriamycin goes for the BC. And if I really need to be taking the cytoxan? hmmmm....

I just don't know what effect the treatment will have on my CLL or BC, if my CLL will interfere w/the BC treatment, or vice versa, or if there's going to be a downside to all this? It's pretty discouraging to think that I'll no longer be eligible for any clinical trials since I'll already have had some chemo. I pretty much had it figured out what I'd need to do for my CLL, but this seems to just dash all of that. Talk about a monkey wrench. Got a feeling that nobody really knows, and that I'm really playing Russian Roulette with my CLL right now.

Communications

I've already found that sometimes I just don't feel like talking about any of this, and other times I need to. I know that you care, and I don't want you to stay away, but the other night I got so many calls, and you know how I love to talk, and I appreciate your concerns, but I already know I can't continue that way. Sooooo, I'm going to try this method. You can come here to find out how it's going, or you could call Fred at times, but even he can become overwhelmed. I'll try to keep this updated as new stuff comes along. This could also get very boring, too! You can also respond here if you choose.

Some of this might be very detailed, but my CLL friends and also my new BC friends would understand. Many of you can just skip over the technical stuff. I won't feel offended. And of course, emails work for me ANY time. I'm told that there will be times I would want to read and respond to emails, but that 3:00 AM is probably not when you'd like to talk or chat. Can you believe that? lol

Also, there's more to life than breast cancer. I'd like to share some other good news, too. Such as my daughter and her husband are expecting their first baby in about 5 months! And they live much closer than our other 2 grandchildren, so I'll get to spoil this one! Woooohooooo!

There's a couple emotions I'd like to share. First off is the outpouring of cards, gifts, notes, emails and prayer chains. I feel so blessed to have all of your support. Overwhelmed and humbling, too. Sometimes we just don't realize how much people care. It makes me cry, too. I cry in gratitude. I've cried in frustration, and I've cried in bewilderment and fear. Oh, yes, I've also had my pity parties. But the hardest part was having to ask for help. I'd think I was a big girl and could do it, and then all I could do was blubber. I've just never learned how to ask for help for myself. Yes, I could ask on anyone else's behalf, and feel pretty darned good about it. But to ask for ME? Whoa, what a bummer.

My oldest daughter came a couple weekends ago and took me shopping while waiting for the bone scan. She even paid for it all! (Well, I'd left my stuff in my car.) She got me some red tops, and told me I wasn't supposed to wear grey ever again! Since I'll be losing my hair in about 14 days, does that mean that I'm supposed to have the new stuff come in in a different color? I wonder how that's done?

Now, for my sisters and daughters. And maybe neices, too. I'm having my coordinator give me info on genetic testing. Insist on an MRI at least every 5 years. This alternative is not going to be a picnic. Besides, MRI's don't use any radiation, either! You'll just be like your magnetic personalities! And I know we got Dad's claustrophobic gene, but the pills will get you through that "God Damned Culvert!" as Dad used to call it.

Be well,
Margaret

My BC Journey

Over Winter Break, my husband expressed concern about a lump on my left breast. I've always been "lumpy" with fibrocystic disease, so this wasn't really unusual. However, when I stood in front of the mirror, I could see some irregular "puckering" you might say.

So, first day after the holidays, (Jan. 3, 2006) I called the Imaging Co. I already had a mammagram appointment set up for 3 weeks later, but just felt I needed to have this checked out sooner. "No, your appt. is only a screening one, and you'll need to have your doctor set up a diagnostic one." My doctor's office wanted to see me first, so that morning they got me in. The Nurse Practioner got me in later that day to one of the local hospital's breast care clinic. So far so good. The hospital even put an ID band on my wrist. After about 15 mammagrams, 3 or four punch ones, a couple ultrasounds, they could find nothing except a lot of reservoirs. Oh, and the local Imaging Co. and said hospital no longer share records in a timely manner, so the radiologist had nothing with which to compare anything.

Of course everyone could feel this hard mass, but it just didn't show anything. The radiologist suggested an MRI, but again needed a doctor to order it.

My GP sent me to a surgeon, who ordered an MRI. MRI showed a 6 cm. mass in left breast, a couple suspicious spots in right, and another big spot in left. So, now the surgeon ordered another MRI w/biopsy and clips. The results were that the 6 cm. mass was invasive lobular carcinoma. I got the word February 8th.

Feb. 15th, I saw Dr. C., my new oncologist. He ordered a sentinel node biopsy, bone scan, CT scan, etc. So on the 17th I had 4 nodes removed under my arm after injections of radioactive dye. With the exception of the first node, the nodes were mostly clear for BC cells, but were full of small lymphocytic lymphoma cells. I've had chronic lymphocytic leukemia (CLL) for over 7 years. No treatment necessary for CLL.

The tumor is still in my breast. Dr. C. had me start chemo with adriamycin and cytoxan on March 2nd. The plan is for 4 to 6 sessions every 2 weeks. This is to hopefully both shrink the tumor so it can be totally removed and to kill any BC cells that have escaped elsewhere in my body.

The first session went well from 1PM to 4 PM. Other sessions won't take as long. The nurse found a vein near my wrist that they used. I could get a port in my chest, but that's a 2 hour surgical proceedure that I'm not sure I need, and they gave me hints on how to get a vein to present itself next time. (salty foods the night before and tons of water). Of course now, I realize they have to take blood 3 days before my next chemo, but that can be inside the elbow. My left arm can no longer be used for blood pressures, shots, or blood draws because of the missing lymph nodes. So it's all going to be done in my right arm from now on. They gave me anti-nausea meds, and so far I'm doing alright on that end. Tired a lot already, though. I also got a shot in my tummy to rebuild my blood cells when they come crashing.

I went to work the next day. However, I'm going to have to stay away from there very soon. I work with developmentally delayed 12-14 year olds who have many colds, viruses, strep, impetigo, etc. Dr. C. wrote a letter requesting that I not work during this time. So I'll have to take care of that business before I'm totally gone. I believe I can still work next week, but we will take it one day at a time.

I feel betrayed by the medical system in that I was never given an MRI before. Both my mother's mother and sister died from breast cancer. I don't know what kind they had, but I'd been very good about having yearly mammagrams. An MRI every 5 years would have given me better odds. Mammagrams are good at detecting the 85% breast cancers. But I had to be in the 15% that get the lobular kind that mammagrams don't see. If my tumor were the size of a penny, it already would have been 5 to 8 years along. But 6 cm? My gosh, how long has it been there? That's like THREE pennies! So now I have to take the chemo because it's over 5 cm. and presents itself not as a round glob, but as a tree root--sorta with fingers. It's a cost vs. benefits thing with the insurance companies, but tell me where it's any benefit to have to go this route just to save a couple MRI's? I'm not suggesting MRI's for everyone. Just those with a history and lumpy breasts. And it needn't be every year. From what I've read, 5 year, or maybe even 10 year increments would be satisfactory. IMHO...