It's Always Something

I'm still here, and kicking!

2009-06-24T07:31:00.000-07:00

Another birthday has passed. Another set of pearls and diamonds. (Gotta somehow let him know that I have enough pearls and diamonds--that I'd like some sapphires or emeralds or rubies!) But I thought I had already expressed that. Looks to me like I'm not the only one getting that "hide your own Easter Eggs" mentality.

We've got chickens now. And they're reproducing. We were losing a hen every week, so Fred decided he needed to do something about the coyotes behind us. Lucky for the coyote, we discovered one of the hens just below our bedroom window with 7 little peepers. On further hunts, we found another in one of the pole barns. She came out last week with 3 little ones. And the last one is up in a barn between huge bales of hay. Fred said he heard one little peeper yesterday.

He still thinks he's going to have to do something about the coyote, though. The roosters have disappeared except for one. I have reservations about hurting the coyotes. Bruce, our deceased neighbor, used to enjoy watching them cock an ear, stalk, and leap in his fields for the little rodents. Part of the balance of nature. Fred says the free lunches at Fred's Farm is not part of that balance.

I'm back to seeing my oncologist every 6 mos for a couple years now. No news there, which is good. So I'll probably not be posting much on that front for some time. Hoping all is well for everyone. M

My, How Time Flies!

2007-07-21T14:03:00.000-07:00

Lo Siento, por favor! Mea culpa, mea culpa, mea maxima culpa! Gee, I remembered my Spanish AND Latin!

On the BC front, it's just rather ho hum, and I rather like it that way. Suffice it to say that after consulting 4 different plastic surgeons, I finally came to terms that reconstruction just wasn't a viable option for me, so in May I got fitted for some very nice prosthesises. I got to pick out the cup size, and we went from there. Mine are "climate controlled" with special wicking properties, or so they say. However, even in this heat wave, I've been going much of the time with the "no front fenders" option.

One of my young Bosom Buddies (a year ahead of me in diagnosis)had reconstruction last fall, and had told me then that she was very pleased with the results and that she'd do it again if she had to. But now the past two months they found her BC had metastasized to her femur. They replaced the hip, reamed out the marrow down to her knee, and put in a titanium rod. Now they found a spot on one of her vertebrates. This week she told me that given the choice now, she would NOT have had reconstruction. Please keep Barbara in your prayers.

My absolute lymphs stayed within normal and just came out of the top end in my June checkup. Next checkup in September.

I was informed yesterday that I have diabetes. I don't know much, but will be scheduled for "Diabetes School" soon. Both of us have to attend to make it all work.

Finally, since I won't be needing the excess tissue that was left for reconstruction, I'm scheduled for "cleanup" surgery Aug. 16. Dr. promises that the tubes this time won't hurt as much. We'll see.

Reminiscing

2007-01-01T16:54:00.000-08:00

There's just no way I could have gotten through 2006 without the prayers, acts of kindness, cards, visits, phone calls, emails, and just plain being who you are. Some may seem trivial and minor, but believe me, every bit gave me hope and the courage to keep on. Looking back, it all helped to numb just how serious things were. It's like you were all there to ease the rawness. Thank you, Everyone!

I'll first talk about the donated leave. Some school district employees who had enough leave banked were able to voluntarily and generously donate one of those leave days for me. One friend tried to donate but didn't have quite enough to do it. It still made a difference for me. This allowed me to concentrate on getting through treatment and getting well. Staff from my school also provided many frozen meals. Another staff member knit a shawl that I will always treasure.

My artsy sister-in-law from New Hampshire sent a VanGogh notebook and a bag that accompanied me to all my chemo treatments. She later sent some Emeraude Dust. (My mother used to get that as presents from her students.) We just saw Judy and her guys in Seattle last week. And yes, Bill & Judy, we will definitely be there for Spencer's graduation in 2009!

A friend had given me all these pink bracelets to give out to family and friends. Those disappeared fast. Former neighbors came by with wine and good conversation. A student I had 15 years ago even brought me flowers and some Almond Roca. My surgeon presented me with a pink beaded bracelet that her son's leadership group had made at their middle school. And my radiologist gave me a copy of Small Wonder after one of our political conversations.

I am still in awe by all the "strangers" who do what they do to support us. Reach to Recovery sent other BC survivors and provided a wig, another bag, a temporary prosthesis, little pillows, and many booklets. There is a "sisterhood" out there that we wouldn't know about unless we've been there. Head coverings and heart pillows are made by the women of the LDS church and Greenbluff Homemakers and left in the oncology and/or radiation waiting rooms for us "bald" patients. The Greenbluff Homemakers do this to honor the memory of one of their members. They are really the best hats around. Believe me, we put them to good use. The wig and most of the hats have just been donated to Cancer Patient Care. I kept a couple plus the flashy ones my sister sent.

I was very impressed and encouraged by the American Cancer Society's Relay For Life. They provided all the survivors with t-shirts, a "survivor" medal, and the Olive Garden fed us plus a guest. A woman gave away jewelry she had beaded for the many survivors, and a very young breast cancer survivor presented me with a pink ribbon pin. I've since gotten to know her, and she's quite the energetic "Survivor Chick." Our "Bosom Buddies" group raised the most money last year for Relay. We might not come in first in 2007, because it looks like we'll be giving some of the funds raised to our local Cancer Patient Care. All monies raised here for Cancer Patient Care stays here. CPC helps fill in the gaps for cancer patients whose disease has caused a financial hardship for them since insurance does not pay for things like Ensure.

In October, the Susan G. Komen Foundation and Providence Cancer Center were among others that celebrated life by sponsoring luncheons for survivors.

My daughters took me clothes shopping, cleaned out our freezer, and sent me note paper, and "flowers you can't kill!" They also conned one of their friends to help while cleaning my bathroom.

Cards and emails from my IA Leadership group, co-workers, Alliance members, family, and postings on this blog helped a lot, too. Thank you, John Wagner, one of my CLL friends. I gotta thank David Arenson for his leading the way for us.

The difference between friends and family have become blurred for me. I consider you all family. Of particular closeness are the 3 other couples who made up our Sunday morning breakfast group. Two of the gals took me to lunch one weekday, and one provided me a day on the Bluff. She and her husband also sneaked in the best huckleberry smoothie I've ever had. Plus a multiple plant--which, I'm sorry, only 2 of the 4 plants still survive. Diann gave me another of my pink ribbon pins.

One of the husbands spent most of the spring and summer in the hospital waiting for his second heart transplant. I had spent a few mornings visiting him after my own appointments downtown. When I came home from my mastectomy, his wife, Karen, brought by a precious "Angel of Hope." Darell got his heart in July and got back to horse riding, etc. Unfortunately, his new heart just quit last month. There's such a huge hole ripped out of our hearts.

Prayer has been a sustaining force for all of us. The world seemed a bit smaller this past year. I know there were people in Australia, UK, Canada, plus LDS prayer groups in Wisconsin praying for me. Not to mention family and friends throughout the US. My friends in the Spokane Alliance seemed to be the ones who started it all when they joined hands around the room to offer a prayer for Wym and me. And the prayers haven't stopped. I felt the embrace of all my CLL friends. Thank you for all the Masses, prayer chains, 23rd Psalm picture, medals, etc.

Finally, I got closer with some Greenbluff friends. We'd have tea or coffee or soup, or whatever. But mostly conversations. And in between, they'd leave muffins, meals, sparkling cider on our anniversary, or run errands. I thought of Jody (anyone who knows her immediately thinks of an angel) as my special angel sent from above. She'd always come up with exactly what I needed. Well, wouldn't you know that in September she was diagnosed with uterine cancer. It had spread to her lungs and liver. I just felt totally inept knowing that I'd have to be back at work when she would be going through her chemos. Her first round was pretty devastating, so I encouraged her husband to ask the doctor about a particular anti-nausea drug. Yes, that one's expensive, but gee whiz....that one WORKS! Jody hasn't had any nausea since. Luckily, I was able to help some. The blood tests show the cancer markers continually going down, down, down. She still has 2 more chemos left, and then they will operate and remove her uterus, perhaps part of her liver and part of her lungs. Please, everyone, add Jody to your prayer intentions.

Thank you for reading this. That, too, has helped.

HAPPY NEW YEAR!

2007-01-01T16:43:00.000-08:00

Happy 2007, Everyone!

I've been scolded quite a bit lately about my not updating my blog. I've really been wanting to do a list of Thanksgiving, but was afraid I might leave someone out, so here goes!

The good news is that after a December 1, 2006, bone scan, CT scan, and blood tests, the report is that there is absolutely no sign of cancer anywhere, and to come back in 3 months.

Here's a wish and a prayer that every one of your dreams come true for 2007.

Post Treatment

2006-11-02T19:06:00.000-08:00

I had a super time with my sisters and brother when they were here in September. We went to Seattle and visited with my new grandson...(oh, yeah, his parents, and aunt, too!) ;-) While there we rode the ducks and had quite the time touring the town and Lake Union. I got my own quacker from there, too!

We also had to see the flying fish at the market. At one point, I just got so tired that my sister Connie pointed out an empty milk crate on the corner, so I sat down on that. She immediately ran into the nearest coffee shop (Seattle does have a few) and set a cup down on the sidewalk next to me. She also put a dollar and a quarter in it. She suggested I play my duck (the quacker), so I was doing that when my daughter and other sister caught up with us. Sister Karen incredulously asked, "Somebody PAID you?" while my banker daughter just walked on ahead hoping nobody knew I was her mother. She was also concerned that I'd be arrested for not having a permit!

We returned via Leavenworth and enjoyed their Autumn Leaf Festival. Since we were right there, we attended Mass there. I really had to smile broadly when my brother grabbed my hand and sang The Lord's Prayer with such a booming baritone voice. RJ lives in a group home back home, and my husband just cracked up later when RJ insisted he could not wear the size 10-1/2 shoes we had bought him. He had to wear size 12-1/2. Oh, yes, he also could not get new socks unless they had the gold band across the toe, either! Rainman has nothing on him!

Since then, we've had a nephew and brother in law visiting us on the weekends.

I started work October 2. The first week about did me in! I AM getting stronger, but just not quite there, yet. I wasn't prepared for the emotional roller coaster, though. Since returning to work, I've had 3 girls ask me if I was pregnant. The last one was especially cruel by saying, "So tell me, are you pregnant or just plain fat?" I lost it, and she did apologize and felt such remorse, that I got a promise from her not to ever say something cruel like that to ANYBODY...EVER!

Fred was working 12 hour shifts 7 days a week for awhile there, but thankfully, that's over. (We hope.) We're enjoying the times we get with TJ, and looks like he's having a good time, himself. For a kid who is just 2 months old, he's already been to a Seahawks, Mariners, and Huskies game(s). He's even become a "chick magnet." There's a picture of him being held by a SeaGal! I'm looking forward to spoiling him some more during Thanksgiving.

Not Much To Report

2006-09-20T08:33:00.000-07:00

I saw the other plastic surgeon Monday, and he concurred with the first one's assessment about how reconstruction might not be successful. However, this man did discuss other options and what I would have to do to get into shape for it. At least he gave me some hope. So, I should be seeing him again in March or so.

Fatigue is still a problem when it hits. (Ya wouldn't want to be anywhere near me at those times, cuz I'm just as liable to bite your head off!)

My brother and two of my sisters flew in yesterday. Connie brought some pictures of our cousins, grandparents, and aunts and uncles. One of the pictures shows the eight aunts sitting on chairs or benches with their husbands standing directly behind them. The women are all dressed in their Sunday best dresses, while the men are all wearing suits and ties. You could tell these men were all farmers, though, by the white foreheads. It's a very handsome group. The only one still alive today is Aunt Huldah.

Now for all you cousins out there....Bill used to tell me this, but I just never believed it, that I was Grandma's favorite. Well, Connie brought proof and a picture of her and me that I had never seen before. Grandma had written little notes to her kids and grandkids in a little notebook but had never mailed them: A note dated Nov. 11, 1952, said:
Dear Margret (she never could get the spelling right on my name!...On a crocheted box for me she had written "Margarit" But Grandma came to this country when she was 8 years old after learning how to read and write in German. So her English and handwriting were just beautiful!)

Nov. 11, 1952
Dear Margret My Little
Pal. my sweet little gal
heard you are sick
you better snap out of it
quick
That old Mumps
will soon be a thing of
the past and Grandma
will be so glad
Santa Claus will soon
come here
To look for you Dear
God Bless you All
love G.Ma

Connie had mounted the picture and note like they do in scrapbooking, and of course I was moved to tears.

Medical Appointments

2006-09-14T22:04:00.000-07:00

I saw my radiologist Monday. She was pleased with everything, and said I could either see her in 3 months or not--only if I see my oncologist instead. So, it looks like she's signed off on me.

Because I wasn't seeing any real need for it anymore, I thought Monday would also be my last physical therapy session. However, Sarah worked on my scar tissue, and it made such a dramatic noticeable effect, that I will be continuing that for awhile.

Today I got a new nose piece for my CPAP--oh, did I ever mention that I have sleep apnea? Hopefully, this new design will work better for me since I've been breaking out with red blotches on my face where the headgear rests.

Finally, today I saw my oncologist. My WBC's are at 9.1, Platelets are 298, reds are 4.6, and hematocrit is 37.4. All nicely within normal ranges. He said they'd call me if my liver and kidney functions were out of range. Otherwise, I don't have to see the whites of their eyes until December 18th! wooohooo! The protocol now is 3 month checkups up to 2 years, (or maybe one year--I can't remember), then 6 months, etc. They will be checking my CLL at the same time. After the breast cancer checkups, I'll just be seeing them either every 3 or 6 months, depending on how fast my whites go up. Otherwise, he said I need another couple weeks of rest before I go back to work. I'll take it!

Next Monday, I see another plastic surgeon. He's the one everybody here brags about--it's too bad I didn't see him to begin with, and that was because my surgeon was under the impression that this doctor did not accept my insurance plan.

I attended an IA leadership meeting the other night, and I realized I can't be going back to my other civic duties for awhile yet. My body just yells, "NO!" I had tried to do some political picketing awhile back, but even then, I could go only about 1/2 hour before calling it quits. I found that phone calling is also hard for me to do. And here the last election cycle I worked at campaign headquarters at least 3-4 nights a week plus some doorbelling on weekends.

Baby TJ is growing and thriving. My daughter sent some pictures with both him and his daddy in Seahawks jerseys. He's already changed so much. I plan to see him again next week.

Thank you all for being with me through all this--albeit in spirit if not in flesh. I'll report again next week. M

TJ

2006-09-05T14:59:00.000-07:00

Our "baby" had her first baby last Monday, August 28th. He was a bit big and wasn't able to come into the world the usual way, so after 19 hours of trying, he came by Caesarean. TJ's daddy and Aunt M were in the room with "Mommy." M was taking pictures. What a big beautiful (yes, I'm using the word beautiful for a boy--get over it!) boy! He was 9 lbs., 3 oz., 21-1/2 inches long, and his footprints were bigger than the cards they put them on. Yes, TJ has huge feet! And he's so perfect.

His mother's hematocrit was at 18 last they checked. Even the doctor couldn't believe that she could walk into her office. They talk about blood transfusions, but are trying iron, first.

I hated to leave yesterday, but I had to get back for my PT appointments. Plus, it's kinda funny watching two anemic women trying to get stuff done. Luckily, there's another set of grandparents and aunts and uncles on the coast to help out.

Today is also the first day of school. Part of me wants to be there, and another part says, "What? Are you nuts?" So I try to make a dent into the backlog of household chores. This ain't no fun at all, folks.

Roll Your Eyes!

2006-08-19T15:04:00.000-07:00

Yes, I finished radiation on the 9th of August. I was so excited about not having to see some medical person every day, that I forgot I had an appointment with my Oncologist the very next day. So much for the "Free at last, Free at last, Thank God Almighty, I'm free at last!"

We rescheduled it for a week later, and this time I remembered to show up. He's brought in a partner, so we had our introductory heart to heart talk. He passed my rigorous criteria, and I will see him again next month. No labs, but will next month.

I'm still not cleared to return to work, and will be off most of September. For me, I need the rest. Fatigue is an interesting animal. When that's about all you know, you don't even know you have it. It wasn't until one of my online CLL friends put it into words: Fatigue is like having another person inside you desparately trying to go to sleep while you're struggling to stay awake to get some things done. And I can tell you that the things I actually accomplish are a mighty tussle.

Tuesday, I had my initial consultation with the plastic surgeon. It was the worst experience I've ever had. He said, "I can't, and I won't do it!" His excuse was that I did not have enough tissue for it, it's a 10-hour surgery, and it wouldn't be worth it. I've never been told that I don't have ENOUGH tissue for ANYTHING! He further said, "You ought to be glad you haven't died from your cancer." He really didn't give me any hope or suggestions, just told me I should go to the University of WA for a second opinion. Yet his office couldn't offer any names or direction on where to start. He even commented, "Whoa, look at that!" to his nurse when they saw my scarlet red radiated left side.

I was utterly devastated. It still hurts when I think about the encounter. Thankfully, one of my Bosom Buddies had a picnic planned for that night, so I had some genuine support right away, but I still had to drive from one end of town to the other to get there. I also let my oncologist know what had transpired, and he told me to go see Dr. so and so.

Here, the hope of reconstruction had lessened the horror of the bilateral. I knew I couldn't do it until next summer, that there would still be scars, but just the idea that I could look somewhat normal at a future date was some of what's sustained me throughout all this.

Finally, most of the skin in the radiation area has peeled, and those parts look almost normal. Ok....slightly tanned. The rest around the incision and under my arm are still pretty red and sensitive. Silvadene is such a refreshing, cooling salve for the burns. Just messy on the clothes, though.

Staying close to the phone for word of my new grandson's arrival....(He's due right NOW!)

Till next time....Love ya!

Only Three More Days of Radiation!

2006-08-06T12:55:00.000-07:00

Yep! Only three more days. I see the oncologist on Thursday, the 10th, and hopefully get a release that I have to turn in to my school district by the 11th. I would like to have a pet scan or some sort of diagnostic test to prove that nothing is left lurking around, but what could they do? They can't do a mammogram or MRI since there's nothing there to do it on. A blood test would only show where my reds, whites and platelets are, and a bone marrow biopsy wouldn't make sense. Besides, that's pretty barbaric, and I've learned enough about BMB's to know I shouldn't be needing one unless I was going for a stem cell transplant or in a clinical trial.

My radiation area is starting to peel, and the newest med (salve) that the doctor ordered has really helped with the pain. Now why didn't they give that to me sooner? That's the third topical that I've tried. The doctor had even suggested I use one or two of my hydrocodones to let me have a night where I could sleep last week. One night two tabs didn't help much because then my whole body started itching. So I had to go find the benadryl and take a couple doses of that before I was able to actually get any sleep. I believe that was around 2:30 AM.

That's something that concerns me. I noticed that when I had the bilateral that morphine made me itch intensely. Having had experience with Hospice, I know they give the patient morphine for the pain at the end. Now if I'm itchy from it, what will they be able to use when it's my time? Now that's scary! I'm also in a pithy mood right now because one of our nicest CLL'ers just died last week. His CLL had turned into the deadly "Richter's Transformation," and that's when you know it's all over. My personal bias is that it's the treatment that causes "Richter's Transformation." Another friend had left us earlier this year after doing everything he could to fight the dragon and then moving to NM to be close to his beloved Guadalupe Mountains. He even got to play his guitar in the Carlsbad Caverns and shared that with the rest of us CLL'ers.

Next week on the 15th, I see the plastic surgeon and my dentist. Then I think I'll be done with medical stuff for awhile. I figure we'll do the reconstruction next summer so I don't have to use up my sick leave.

This has been a long haul for me. Almost 8 months from when it all started. I never realized that this journey would take so long. Guess it ain't over till it's over, I guess.

There's More

2006-08-01T20:05:00.000-07:00

I really took advantage of the 3-day "rest period" by sleeping a lot and slathering on some RX cortisone cream. Have you ever read one of those pharmacy fliers that they give you? This one basically said, "This is some really bad shit, but your doctor figured the benefits might outweigh the horrible side effects. So don't you dare use it on any other body part or for any other condition than for what your doctor prescribed. Don't apply more than 3 times a day, and wash your hands carefully before and after applying. Finally, whatever you do, don't use it in the underarm area unless your doctor said you could." Now just where do you think I need to apply that stuff? That area gets either terribly itchy or terribly painful until I put on that cream. However, early this morning it didn't seem to even give me any relief. I got pretty desperate and grabbed a vitamin E softgel and put it on. What a relief! For awhile.

Oh, well. Starting today they won't be zapping me from all sides. They made a lead template with the opening in the shape of my scar plus 2 cm. all the way around it. So, now I just get 30 seconds in one zap, but it's pretty darn close. Fortunately, I don't have to reach for the bars or get situated into a form for my head, arms, and shoulders. I actually get a pillow! And I'll be doing the whole 33 treatments, so next Wednesday will be my last visit there.

I was giving them a bad time, and they asked where I worked, and what I did so they could come and bug ME sometime. When I told them it was in a DI program, they just shook their heads, chuckled, and informed me that they're not like my kids.

When they changed the walls, etc., I had to go look for my bathrobe. The department had converted one of the men's dressing rooms into a closet, but one had to go through their anteroom to get to it, so, as I'm going in there, some crotchety old (new to that area) patient practically tackled me, and disgustingly told me that I was heading into the men's dressing room! Now everyone waits in our tiny waiting room next to the dressing rooms. (Those who don't have to remove any clothing lost their big waiting room with the tables of 1000 piece puzzles.) Well, after I did my changing in MY dressing room and came back out, we got to talking. I noticed he had a finger that wasn't quite as long as it should be, but, of course I didn't point that out to him. Seems he'd retired from the Navy over 30 years ago, so I was going through some ships' names to see if he'd ever been on any of them. No connection there. He finally informed me that he worked mostly in commissaries throughout the world as a meat cutter. You know this chemo brain is slow, so it wasn't until I got home that it dawned on me what might have happened to his finger! (I know....I'm bad!) ;-)

It's going to be nice having my life back when this is all done. However, I have done a lot of reading. My radiologist and I even exchanged books. Although she returned my book later because it was a signed gift from the author, she let me keep her book. (She said she'd bought 2 extra copies to give to someone interested.)

That's all for now, folks!

Been Awhile

2006-07-25T22:43:00.000-07:00

Wow! I've finished with #23, and tomorrow they will be readjusting where and how much I get for the last 7 or 10 rounds. They call that simulation. Actually they will have me in another room that has a setup like the one where I have the treatments. They'll take pictures, both regular and x-ray, (not sure about the CAT scan) then calibrate things, and then the radiologist will decide on the final prescription. It's all done on computer. (I went through that before I started my first radiation treatment.) At that point, I will be back in my "old" room for another round of zapping. I'd heard that they really turn up the power and concentrate on the ancillary nodes the last days. That's so they can't hear you complain about the pain that develops later.

I've got a red 14 x 6 inch horizontal rectangle that runs from mid chest around to my back and from below my "bra line" to where I'd have my hand during the pledge to the flag. I also have a separate bright red 2 inch heart at my collarbone. I slop that aloe vera gel on at least 3 to 4 times a day, yet the area is still extremely red. There's been only one itchy episode (yesterday) that was controlled by 1% hydrocortisone cream. Because most of my nerves were severed during my last surgery, the pain is very minimal. It just LOOKS bad.

The hospital had put in the beautiful one story oncology wing only a couple years ago, but now they are totally demolishing it to make way for a tower for doctors' offices and a new surgical center. There's only one problem--the radiation vaults will NOT be touched--they're far too expensive to be demolished and rebuilt elsewhere. So, the construction crews have been putting in a new hallway to accommodate us, and Friday the radiation department will be totally shut down for changing electrical wires, etc. That means I get a day off! Steve said it's probably good for me to have a 3-day weekend at this time to allow my body another day for healing before they blast it again. If I get an open sore anywhere there, I'd have to take a radiation recess. (And I thought CHEMO was bad!)

Aside from daily radiation treatments, I've also been seeing a physical therapist twice a week for lymphedema. I'll describe that process in another post. Frankly, this life revolving around appointments is getting old.

Fatigue has really set in. I took a 4 hour nap this afternoon. Of course, it could be the reaction to this heat spell. Fred's been out haying in this over 100 degree weather. My car's A/C had lost its charge, so until last night when Myron fixed it, I'd been driving a "hot" car. It's been somewhat comfortable inside our house, though, with fans running, and the A/C set at 80 degrees. (My co-workers are going to be in shock when they read that!--I'm always turning the heat down to 65 during the school year.) Then we open the windows after the sun goes down and let the cool air in. However, Saturday, when the daytime temp was 105, it was still in the high 80's at midnight. Right now at 10:30 PM, it's 75 outside.

On a final note, we got the rental rented for another year!

Thank you, everyone, for your prayers, thoughts, and caring. I couldn't be doing this without all your help in that regard.

Radiation Routine

2006-07-07T20:28:00.000-07:00

Ok, here's the skinny on what happens in radiation. I waltz in, go around the corner where there's some ritzy hotel type white bathrobes hanging on hangers on a rack in the hallway past the radiation lunch room. I find the one with my name on it. I have mine on a pink plastic hanger, and usually to the left. I retrieve mine, come back toward the main waiting room, but I get to now go to the "little" waiting room that has two doors next to it. One says, "Men's Dressing Room," and door number two says, "Women's Dressing Room." I have to be very careful that I pick the right door.

Once inside door number two, I need to pick out a clean hospital gown from the shelves to the left. Straight ahead there's two MORE doors. That's where I remove my top, don the gown, (opening in back), then put the robe on over that. Today I was in such a hurry, I forgot the gown! Anyway, once I'm properly dressed, I place my street top in a little cupboard near the gown shelves and emerge from Door Number Two to the tiny waiting room where there might be at most two other ladies in white robes. Oftentimes, I'm the only one. The only time there's a wait is when I forget to bring my reading material. Otherwise, I swear the techs wait until I've dug it all out including the reading glasses, before they say, "OK, Margaret!"

That's when I'm led to this room with 6 feet thick lead walls, hang up the robe and purse, get settled in on this table that has my special mold for my shoulders, arms and head. They even put a pillow under my knees so I'm comfortable. I then get my arms out of the gown, raise them over my head, and grab some bicycle handlebars behind me. At this point they move the top part of the gown to expose the tattoos on both my sides and front, adjust the table, tug on the sheet below to make sure those tattoos are lined up with the lasers from the ceiling and both walls. Now they leave the room, and some big arm that delivers the radiation rotates over me and to my right. Whoops, they do put a 1/4 inch lead plate in front of it so I don't get "burned" from the sides. Yeah, right. I hear the machine making noise for 20 seconds then 17. (Every other day they place a gel-like 12 inch square over the part to be radiated so that the radiation gets fooled into thinking THAT's my skin and then the real surface of my skin gets the heat.)

After the two blasts to my left side from my right side(the window is within 2 inches of my face), the arm moves to straight above. They remove the plate, and I get two whammies straight on. Then the arm swings to the left side and targets my underarm to my collarbone. During all this time, I'm not to move, but I can breathe. When all is done, they come in, yank out the knee pillow, and tell me I'm done. I can then get my shoulders back into their sockets, put my arms back into the sleeves, get up, and leave. Sometimes, after they've got me in position, they'll think to cover up my right side since it's just the left side that's getting the treatment. Otherwise, there's just no such thing as modesty.

One day a week, I have to see the radiologist who just wants to know how bad it is yet. Today, I saw a nutritionist who told me I had to have 87-120 gms. of protein a day during this time. Right. And another day of the week, they take x-rays while I'm on the table to see if they're in the right spot or not.

When I leave, I head back through "Door Number Two" to one of the dressing rooms. I take off the robe and gown, get dressed, throw the gown into a big clothes hamper, put the robe on the hanger, and hang it back in the hallway around the corner. Then I try to find my way out of there and back to my car. The hospital just started a two-year building expansion program, so we never know which door we'll be coming through from one day to the next. At least they put signs in the parking lot reserving the closest spots for us oncology patients.
There's another big waiting room when I first come in, and that's for the folks who don't have to get undressed for their radiology and for everyone's companions, drivers, etc. They get a TV, tables with puzzles, etc. But they don't get the robes!

So far I've had 11 of the 30 to 33 treatments--a third of the way through!

Father Paczek

2006-07-04T18:21:00.000-07:00

OK, I know some of you will think this is crazy, and that's ok. I just feel compelled to write about this. As most of you know, I grew up on a farm outside a very small town named Cayuga in southeastern North Dakota. About 12 miles to the east of Cayuga is the town of Lidgerwood. Geneseo was the little town right in the middle. I mention this because I had strong connections with all those towns--especially through the churches. As teenagers, we also knew which priest was the nicest for penance.

Father Valerian Paczek (pronounced "paycheck") was the Catholic priest in Lidgerwood. We used to say that he could speak 8 different languages, and judging by his English, none of them all too well. So, if we went to him for Confession, he would ALWAYS say, "For your penance, now, say once; two Hail Marys." All the other priests would usually nail us with two Rosaries!

Last summer I had the privilege of meeting with and talking to one of the authors of a book about Father Paczek. The book mostly recounts his WWII years in Poland. The authors had been assigned to take care of Father's personal effects after he had died in 2001. They came upon all these Polish medals and asked a Polish group in Winnipeg if they knew anything about those medals. They verified that those medals were the Polish equivalent of the US Congressional Medal of Honor. They also told the authors that whoever had those was a VERY important, decorated hero.

Oh, and the authors also found Pope John Paul II's private phone number among Father Paczek's belongings. My sister had told me that Father had her type up his congratulatory letter to the Pope, and also showed her some of the letters he'd gotten from John Paul.

The reason I had coffee with one of the authors was that I was giving him a video of Father talking about one of his physician friends being assassinated in Warsaw. I had taped that in 1990. That video is now in the archives of the Cardinal Muench Seminary in Fargo, ND.

One of the things that Father Paczek had done during the war was he'd copy down the names off the tombstones in the Catholic Cemeteries, then make "new" birth certificates for the Jewish population. Years later during a flight to Chicago, he was sitting next to a man he could recognize as being a Polish Jew. Father asked the man how he had gotten out, and the man pulled a piece of paper out of his wallet, unfolded it, and told Father Paczek that this piece of paper was what had saved his life. It was one of the fake birth certificates signed by Fr. Valerian Paczek.

This weekend, as I was sorting through some "stuff," I came across my parents' booklet from Father's Golden Jubilee in 1984. I know I had gone through the booklet 6-1/2 years ago when my mother passed away, and glanced at it a couple other times. But Saturday I noticed for the first time, not only the inscription from Father, but another hand-written note plus a holy card commemorating his 50 years in the priesthood. I swear I did not see those before. About half of the booklet was autobiographic, and the other half was pictures of him and people important in his life. Of course, I found my mother, my nephew, perhaps my sister and her husband, and some other familiar (to me) faces.

Father wrote in there that while he was being operated on for gall bladder in 1975, an operation that lasted 6-1/2 hours, he had been pronounced dead for three minutes. During that time, he said he had a vision that Cardinal Wojtyla would be elected Pope. Of course everybody laughed at him for that one.

Now, you need to understand that Father was a very quiet man who enjoyed singing. He chose to retire in Lidgerwood, and had my brother in law build him his retirement house there.

Now why am I writing this? (BTW, there's far more to his story than what I've put down here.) Well, after really going over that (treasure) booklet and trying to understand more, I had a very unusual experience early Sunday morning. I heard Father Valerian Paczek's voice! I can't tell you what he was saying--I'm such a lousy listener--but there was no mistaking that it was Father with his melodious way of mispronouncing English. What a gift!

HAYING WEATHER

2006-06-27T12:42:00.000-07:00

We're having a heat wave! Fred calls it haying weather. ugh! Either way, I melt in it. Now I'm even adding radiation to the mix. Methinks there's something wrong with this picture. However, so far, so good.

I saw one of the radiology doctors yesterday and asked, "When do I get the salve that everyone talks about?" (They forgot.) So now I have a tube of aloe vera gel that I can put on my "area" 3-4 times a day. I brought it home and put it on Fred's poor beet red farmer's arms. Seems Sunday he went out swathing without sunscreen on the arms. I had made him put it on his face, ears and neck, but didn't realize that he'd be out there showing off his arms. He had even called me to bring out a long sleeved shirt to him.

Yesterday was so hot that the air conditioning in the car couldn't even keep up after being parked in the sun for an hour. Then, as I was driving up Division, I looked for the temperature readings, and one of them actually showed 83 degrees! (That one needs to get fixed!) The next one showed 95 degrees. Of course my trusty thermometer outside my window showed 100!

Ah, but thank goodness it cools off at night! Open all the doors and windows. Turn on the fans to suck the cool air in and sleep in cool peace! By morning, though, you have to grab the blanket, shut all the windows and doors, close the blinds, and be ready for the next onslaught of HEAT! And me? I don't go out in it unless absolutely necessary. Heck, I even let the dog come inside yesterday--the poor thing found his spot on the linoleum next to an air conditioning vent, and just STAYED there. Even the cat didn't entice him to move.

I did do a little work on the rental yesterday, but had to leave there by 2:30 to get to my PT appointment and later the Radiologist's. Today, I'm just staying home getting some stuff done around here until my 4:30 appointment. On one side of the house it says 99.5, and on the other (still shaded) it says only 90. Think I'll go get the dog.

Oops!

2006-06-22T23:16:00.000-07:00

I was just reading some of my other posts, and realized I wrote it wrong. The tumor was still FIVE centimeters when they did the lumpectomy....not POINT five! (Those danged decimals!) ;-) So it had shrunk only 1 cm. --- not 5 and a half!

Time For An Update?

2006-06-22T23:05:00.000-07:00

I guess it IS! Whew! A lot's been happening the past month. Most of the time I was supposed to be healing from the latest surgery, but our 11 year renters chose this time to move out, so since June 1, I've been at that place just about every day. Most days, I didn't last too long. Around 2:00 P.M., I'd hit a wall, and I'd literally be done for the day. (Of course, I didn't get going until around 10:00 AM, either.)

My tubes came out at week 2.5 and 3.5. Now, folks, that pain is truly something to behold! Luckily it's so temporary, and lasts only about one minute. And then it's completely gone. I'd had a drainage tube in before for a surgery, but it was only in for a day or two, and when it was removed, I must've still been on the morphine so never felt that at all! Those things are like a 6 inch long miniature plastic paint stirrer you get from Sears, only probably 3 times the size of the hole that the tube's been coming out of. Of course, I'd had my tubes in for over 2 and 3 weeks, so there was quite a bit of healing around the tube area. O-U-C-H! Ah, but the relief at having those buggers gone and being able to finally sleep on my side instead of my back all the time made it all worthwhile.

My wounds still are not completely healed, but today I had my first radiation treatment. I go again tomorrow and every Monday through Friday for the next 6 weeks. I was really dragging my heels on this one, since everything I had read was that radiation is used if you have only (yeah, right--"only") a lumpectomy, not a masectomy. The radiology doctor finally informed me that because of the size of my tumor, I had a 40% chance of it coming back in 2 years if I DIDN'T have the radiation vs. 10%. Well, gee. What are we waiting for?

I've also been seeing a physical therapist to learn how to give myself (or maybe Fred can?) massages so I can manage the lymphedema. That's a fancy name for swelling in the arm where some lymph nodes have been removed. Actually, it can become a serious problem since the lymph has no place to go, and then infections can occur. That's why that arm can no longer be used for blood pressure readings, IV's, or taking blood. And, I'll have to be especially careful about cuts, bites, etc. Now, that's the hard part. Mosquitoes LOVE me! They always have. Good thing I live here in Eastern WA where we don't have a problem with them like I did growing up in ND. I still have scars on both arms from those nasty suckers!

On the whole, my life seems to revolve around medical appointments, painting, cleaning, and trying to find a bed so I can sleep! Actually, I'm not the painter, but they use me mostly to haze the aisles at either Home Depot or Lowe's, call them to report my findings, and to ask them what it was that they sent me there for. (Chemo brain)

Thank goodness we've had some awesome help from some friends and former neighbors and of course, Fred's cousin, Myron. They spray painted the entire interior--ceilings included, while some of us others tried to stay ahead of them by doing the taping. I've even figured out how to fix vertical blinds. Then the blinds company told me they were not meant to be fixed! Ha! I fooled them!

Tomorrow we're going with 10 others to a dinner theater. (It's really my birthday, but we haven't told them that--I wanted to just go OUT!) It's Tim Behrens as "Scrambled McManus."
We saw him a few months ago doing "McManus in Love," and we all had such belly laughs. Shoot, I laugh everytime I read one of McManus' stories from his books--even when I've read the story 10 times already! His Rancid Crabtree and Crazy Eddie Muldoon just jump out of the pages, and now we get to enjoy them jumping out on the stage!

So, tomorrow will be a busy day: 11:45 radiation, 1:30 PT, and then 5:30 Dinner Theatre.

I think I should rest this weekend.

May 26th, 2006

2006-05-26T14:10:00.000-07:00

Fred had another upper GI this morning, and the nurse asked him who was going to drive him home. He answered, "My wife." "Well, where IS she?" "Out there in the waiting room." "There's no woman in the waiting room....Just a man." "That's my wife." "You mean the guy in the baseball cap?" "Yeah, the lady in the baseball cap." Guess I need to make sure I wear some dangling earrings when we go out next time. Or was the nurse thinking Fred and I had something to do with "Brokeback Mountain?" Well, Fred insisted I wear the Mariners' cap this time. At least the sparkling ones that Karen sent me leave no doubt that I'm female.

I really shouldn't be driving yet, but someone had to bring him home. Besides, I had an appointment w/my surgeon's PA 2 hours after Fred's procedure, and that was just across the street. So, I hadn't had any pain killers since before going to bed last night.

I was hoping that they'd take out my drain tubes, but no such luck. My next appointment with them is June 7th, so I guess I'll be messing with these bothersome thingy's until then, at least. These "saddle bags" surely aren't attractive, so I literally "put a sock on it!" by using black footie socks to hold the bulbs, pinning the socks inside my shirt, and away I go. Problem is that the tubes are quite long and tend to grab the knobs on the kitchen and bathroom cabinets. Talk about a battleground!

We've noticed that my eyebrows keep getting thinner, but there does seem to be a teensy white fuzz on my scalp.

Oh, yes, I'm still getting arenesp shots every week to help build up my red cells. That was yesterday.

I didn't get much sleep during the days until yesterday, because it's very difficult for me to both lie down and get up out of bed by myself without feeling acute pain or thinking I'm ripping open the stitches.

The pathologist reported that there was still a .5 cm. tumor at the site, and that I had clear wide margins this time. The right side had some hyperplasia, but nothing cancerous....yet. I believe I did the right thing, after all.

Oh, and they removed my port. It seems I won't be having any more chemo. It was also in their sterile field, so Friday they had to again try to find a vein for IV. I think they tried about 5 times downstairs, then took me upstairs to pre-op where they tried a couple MORE times. My poor right arm still has 2 bright purple bruises a week later. It seems that chemo can cause scar tissue on the veins, so they can get the NEEDLE in, but not the bigger plastic sleeve. I forgot to ask if that's a forever condition or what?

The PA said I could gently sponge bathe my stitch area with disinfectant soap, but still no showers. I just never imagined how much I CAN'T do for awhile since the other three surgeries (albeit minor) were so EASY and fast healing. I'm hoping to participate in the "RELAY FOR LIFE" June 2-3, at Spokane Falls Community College, since I missed the pink ribbon tea, and other events for cancer survivors. I made a list of relatives of mine and Fred's who've fought a cancer battle and got 25! I made luminaries for each of them, too. Well, maybe I can make an appearance, do the dinner and survivors walk, watch them light the luminaries, and then leave and not camp there. That's simply out of the question right now. I HATE this disease! And yes, I finally figured out who the HTLC people were! I didn't want to miss that, either!

We got our third and last baby calf a couple nights ago. It's pretty active and stands out much more than the other two totally black ones. The new guy has the whitest shade of white for a face. He does look puny compared to the other two who were born 4 and 6 weeks ago. Watching the calves with my binoculars while they cavort out in the pasture below does give me quiet pleasure while I have to stay home.

3 Days Post Op

2006-05-22T09:29:00.000-07:00

Hello. I did have the bi-lateral masectomy on Friday, and came home yesterday afternoon. Everything seemed to go ok. My older daughter came from Seattle yesterday, so I've got some help around here. They're also sending a nurse out for a couple days to check up on me. I think I'm doing fine. Just tired and falling asleep waiting for the computer to warm up.

Have a great week!

Now What's Happenning?

2006-05-16T17:40:00.000-07:00

I saw the radiologist last Friday. They showed me a film on what to expect, explained a lot that went over my head, but the upshot is that I would start with that three weeks after my next surgery. The series would take 20 minutes/day (only a couple minutes for actual radiation) five days a week for six weeks. The weekends are so everybody can rest up! ;-) Ugh!

I see Dr. S tomorrow for pre-op. We don't know if we'll do both, or just one now and the other at time of reconstruction. I really don't want to have to go through all this another few years down the road. Besides, they don't have any guarantees that this hasn't already spread someplace else. If it has, then we'll deal with it when it rears its ugly head. At least it won't be able to spread into my breast again.

I just know that surgery will be this Friday at Valley Hospital. I'm presuming that it'll be at least an overnighter. I know it'll be a bit more complicated than the last one. I really don't crave chocolate, so if anyone knows what would be a close cousin to a heath bar without the chocolate, please let me know.

Be well, everyone!

...It's another....

2006-05-11T19:39:00.000-07:00

Ok...Not sure how to post this, but the pathology report was not good. Let's just say that this type of breast cancer is really hard to see. The so-called original tumor showed up as not being there under MRI after the chemo, but the pathologist said it was 5 cm. and that there were also invasive lobular cancer cells all by themselves on over 80 % of the margins. Yes, they're microscopic, but that's the nature of lobular. This can only mean that I have to have a few more surgeries. First off, a masectomy on my left side. Then radiation to the lymphs, then reconstructive--possibly with masectomy on right side at same time. I'm ready. There could be more chemo ahead, too.

Well, Fred's been sick all week. Guess this is getting to him. He didn't want me to catch it, so slept down the hall, but I couldn't stand it. I figured the guest bed is the bigger bed anyway, so, here I was, shuffling down the hall in my robe and slippers, carrying my CPAP under one arm and pillow under the other. I felt like Little Orphan Annie. No, I didn't catch any of it from him. He even had a 102.5 fever, so I made him use my shower, gave him tylenol, made him eat plain jello, (Is jello ever plain?) and his fever came down. So yesterday he went to work, only to come crashing again today. He's missed two days of work already because of this. I just don't know what I'd do without him.

I saw my oncologist today. Yes, I'm still anemic, so therefore the tummy shot. They accessed my port with absolutely NO problems or pain! I must be getting numb.

TV shows only put me to sleep. Except today's History Channel had something on snipers. I knew I wanted to watch because Fred and I were actually social friends with Carlos Hathcock. And sure enough, they had a segment on him. Any Marine knows who Carlos Hathcock is--he shot a VietCong sniper through his scope from several hundred yards. I'd met his wife through the USS Simon Lake Enlisted Wives Club in the early 70's. I was President at that time. His small Marine detachment was assigned to the Simon Lake. I did not know what he had achieved in Vietnam. In fact, we did not know that until we'd read an article in the Sunday paper about him in the late 80's. Carlos was very unassuming. I knew there was something great about him because of the inordinate respect that his Marines displayed for him. He had just a few marksman plaques on his wall in their home, and simply said he was a good marksman. I remember one time going through a case or two of Strawberry Hill with him and his men in a park at Rota, Spain! Well, we were celebrating the success of the Easter Egg Hunt that we'd just put on for the ship's dependents. Ah, memories!

We felt very honored to be invited to his farewell party. He'd contracted MS, and was getting an early medical retirement. Looking back, everyone else in that room knew of his heroism except for Fred and me. We just knew him and his wife as simply great human beings who were deeply loved. Of course, we got together again when we got stationed in Norfolk, VA, but lost contact after Fred got out of the service and we'd become civilians. Carlos passed away in 1999.

It went well...

2006-05-06T17:27:00.000-07:00

We got to the Valley Hospital yesterday at 7:00 AM. They tried to access a vein for IV, but no luck. I can't believe I'm such a basket case when it comes to those kinds of pokes. An earlier poke inside my elbow to DRAW blood was no problem, but trying to put in an IV line...heck, that's why I got a port! Needless to say, after some discussion with the anesthesiologist, they got permission and a special person to access my port. Piece of cake.

This delay made me late for the radiologist, but got in around 9 o'clock. Now the job was to locate my tumor via mammagram, (there was a "clip" put in there February 2nd) insert a hollow needle to it, then take another mammagram from another angle to see if on target. Not even close. Let's try again from below and use a longer needle. The doctor said the needle was 9 cm. long with 8 cm. inside. This time he was right on the money, so then he inserted a wire with a hook so the surgeon could know where to cut. All this while I've got my you know what in a wringer to hold it in place while they develop film, make a grid, etc., then check again to see if they got where they were supposed to be. To tell the truth, those needle pricks don't bother me as much as those IV ones. (Probably because I got other things to worry about!) After two and a half hours of this I'm wheeled back to my room. Luckily the original 10:30 surgery time had been changed to 12:00, but now we get the news that Dr. S. is even running late on THAT time. So, we just twiddle our thumbs, thinking about a Heath Bar Blizzard that I want as soon as I can eat something!

I think it was around 2 o'clock that I was on the table. Dr. S. removed an area bigger than a golf ball, but smaller than a tennis ball. Hopefully they got clear margins.

Fred decided he had to get back home to do some chores and seeding or tilling, so he assured me he'd be back after dark with my Blizzard. They feed you well at Valley Hospital. They call it "Room Service." You pick what you want from their menu, call their number, and they'll have it to you within 45 minutes. Pretty good, too! Anyway, the next few hours were still a fog for me, what with the drugs I was on. Around 10 I got a call from Fred saying Dairy Queen was already closed, he'd tried Jack-In-the-Box, and they were closed, too, so was heading to MacDonald's for a strawberry shake. Forty-five minutes later he walked into the room with his booty. Security downstairs had given him a really bad time, more so than the TSA at the airports. Ah, but even the strawberry shake was still cold and filling.

I told him to go home and get some sleep. I was fine. I'd wake up about every 4 hours requiring a pain med, but the graveyard nurse said I could have TWO of them. Well, heck, let's go for it! Dang, that round kept the twinges away for over 8 hours! What woke me up in the morning was the alarms going off on the O2 machine. It was saying my pulse was way too low. It bugged the nurses enough that they just disconnected it! Now the only reason I was to spend the night there was to make sure I didn't stop breathing or beating! I guess they figured I'd made it through the night, so their job was done. I had to get up anyway.

I'm home now. We stopped at Dairy Queen on the way home, and I got my Heath Blizzard after all. I took some meds a couple hours ago, but don't expect I'll need anymore till bedtime. Doc used glue and butterfly bandaids to close the incision, and that part looks pretty good. Big bruise, though. I'm just sleepy. I'll be seeing Doctor Surgeon next Wednesday. By then we'll have the pathology report to see whether or not more surgery is required. Look for my next post then.

Again, thank you for your notes of encouragement and everything else you've done for me. I don't feel alone because of all of you.

Looking Good!

2006-05-03T18:01:00.000-07:00

Well, Folks, things are looking good. My oncologist, surgeon, and radiologist finally got together for a powwow and decided that I should just have a lumpectomy followed by radiation to both the tumor area and nodes. I saw Dr. Surgeon this morning, and had to bring up another lump in my other breast. It just didn't seem possible with what's gone on with the tumor shrinking and all. But to be on the safe side, we had an ultrasound that confirmed it was just another one of those cysts. So, the surgery is on for Friday, Cinco de Mayo.

Had a great weekend in ND at my niece's wedding. It was in the same church where Fred and I got married almost 37 years ago. The church was just as beautiful as when we got married there. They even got a new piano for the wedding! I guess they didn't want the same thing happening at theirs as had happened at ours....The organ had quit the morning of our wedding, so our soloist had to sing a capella while we walked in during his first song. This time our soloist's sister played while her son sang. Got to see all the in-laws, some uncles, aunts, nieces, nephews, plus all my own kids and grandchildren. We even got to catch up with some old school-mates from back in the 60's. BTW, they sure do know how to throw a party back there. Seems that there were 308 places set besides what was at the head table. (I don't think the town has more than 45 people in it.)

After the sit down buffet, they moved a couple tables out to make room for the dance. Even my grandchildren learned the Charleston Stomp and the Chicken among others. Then around 10:30, they announced if anyone was still hungry, that there were sandwiches in the kitchen. When the dance was all over, they announced that the party would move to the soloist's garage a couple blocks down the street. That's when Fred and I took the grandchildren and the pregnant mommy and her husband home. (Now, for me, that HAD to mean I was tired!)

I also had time to visit my sisters and brother who live back there. Some of their kids and grandkids gathered around for an afternoon visit. My brother is short, wide, and pretty bald. So they had to get pictures of us from both front and back to see if they could tell us apart. Even my son-in-law got in on the one at the counter. It was so hard to keep a straight face.

When my grandchildren walked into my sister's house, I wasn't ready for them with a head covering. So of course I got a few questions. But later when I put my wig on for the wedding, my 4-year-old grandson looked up at me, studied me for awhile, and asked, "Your hair come back already?" After the dance while I was tucking him into bed, my hair came off, and his eyes just moved from the wig to my head and back and forth. He didn't even move any other muscles! He finally decided that Grandma had "toy hair."

Of course, both our daughters are just beautiful, but our daughter, Kathy, was especially glowing! Their little boy is to arrive around August 20th.

While on the planes, I wore a surgical mask to keep from catching the bugs around us. Boy, you really become aware of all the coughing that goes on around you when you've had your immune system compromised. I also had to put it back on when we got in the shuttles, etc. It worked! I didn't catch anything!

Oh, and we have another baby calf. I even got to see it being born. Amazing! This one is about as big as the other one already! Of course he came out that big! Ouch! Both are frolicking about in the pasture. One more to be born!

Again, thank you for praying for me. I'm sure they are all being answered in the affirmative! I'm feeling great, and all looks pretty good.

If it ain't one thing....

2006-04-22T17:58:00.000-07:00

The last few days were very full for me. Last weekend our daughter was over from the other side of the state. Also, my brother-in-law from Billings spent some quality time with us. I even got a ham cooked for Easter, but the guests had to do the dishes.

We set my surgery date to May 5th at Valley Hospital. Dr. S said I would be spending the night. She talked about taking more nodes, and that I'd later have to do daily radiation for I think she said 6 weeks. Sheila, my coordinator, said she would be setting up a "tumor board" for me with the oncologist, surgeon, and radiologist to discuss my case.

Needless to say, I had to cancel my spot at the NEA/RA in Orlando June 29th through July 6th. Here I was holding that out as something to look forward to after healing.

Monday I have to go shopping for some shoes suitable to wear to a wedding. My daughter says I can't wear those clod-hopper Land'send All Weather Mocs to my neice's wedding this Saturday. Why not? They're comfortable. And besides, the dog ate my DRESS shoes. (Well, just one, but I'm still learning how to walk with that other one without looking like I'm limping.)

Tuesday I get doped up for another MRI. That takes care of THAT whole day.

Wednesday I get a shot to build up my blood.

Then the rest of the week I'll be visiting FAMILY!

Right now, I'm going to have to call my Dr. C. Yeah, I know it's after hours and Saturday to boot, but my hand written notes say "sore throat, mouth pain...symptoms of infection"--- CALL.

Oh, and we got a baby calf on Good Friday. He looks like Bambi, the way he frolicks around. I'd heard that the Disney cartoonists modeled Bambi's antics on newborn calves. But when he hunkers down, he's low and very, very, very still. Mama won't let us near him at all. (I think it's a him--we don't know yet.)

Till next time...
Thank you for everything.

Chemo # 4

2006-04-14T07:20:00.000-07:00

You know those curly clown wigs of rainbow colors? One of my teachers gave me one of them the other day, so I put it to good use yesterday. I walked in to the doctor's office wearing it, told them that my hair was starting to come back, "And you all had told me it would come back curly and a different color!"

Yesterday was my last chemo...for awhile, that is! It seems my port sits sideways. I probably did it myself when I'd reach to turn off the alarm in the mornings. When Stephanie tried to access it, she poked a little deeper than where the lidocaine worked. Big woosie here. So she pulled it out and started over with another shot of lidocaine and punched another bent needle into it. (Yeah, they're supposed to be bent--that's how it works.) Hey, now when they draw blood, it's right THERE in the syringe. I also learned the reason they take 2 vials is that the first one is the throwaway one because it's flushing out the saline and stuff in the port so that the next vial is "clean blood."

I'm even more anemic than last time, so more arenesp. And I'll get to come in every 2 weeks for more of those shots. My platelets, however, have come back to a reasonable level, and my absolute lymphs are still just a little above normal.

The protocol was the same as before: 2 small pouches of two different anti-nausea meds, followed by a pint-sized pouch of cytoxan. Then she "pushes" the four horse syringes of adriamycin into the line. I had to have an extra pouch of saline because of taking so long. After all the meds are in my system, I got disconnected and got 2 tiny shots in my tummy--one of neulasta and one of arenesp. I was in there from 1:00 to 4:00 PM.

Now I see my surgeon to set up surgery in 2 to 3 weeks. (I'm shooting for May 3rd.) I'm sure she'll want an MRI before going in. Dr. C is very impressed with how small the tumor seems. Of course we were having some discussion as to which lump was the tumor! "You got lumps EVERYWHERE!" duh! Because it appears that the tumor has shrunk, he did say that it looks like I now have an 80% chance for a cure. That was the good news.

Until next time,
Be well.

HO HUM.......

2006-04-11T17:30:00.000-07:00

I didn't realize that I hadn't posted for awhile. Things are pretty much the same. I tried to attend the local Dem Convention Saturday since I was a delegate, I left at 11:30 after only 3 hours, and headed for home and a 6 hour nap. Whoa! I didn't realize how tired I was. Of course, we had dinner the night before at some friends' home, and I even had some wine! Maybe THAT was it! Let's just say I'm just dragging ass. And I'm not talking about those critters in my pasture!

Today, a friend and I drove around the bluff and picked up some fresh, frozen Italian fare. The views up there are so magnificent! Then we checked out the newly remodeled market (McGlades) down the road. What a fancy place! Not only is it fresh fruits and vegetables, but a deli and coffee shop. Oh, and don't forget their fresh baked pies! They even have a fireplace inside to gather around. However, since today was the first day in a long while that it didn't rain some, we sat outside and enjoyed the sun.

Thursday is my last chemo for awhile. I presume they'll want to schedule an MRI in a couple weeks, and then the surgery. I'm sure my blood has all gone to heck and back, which may explain the fatigue and easy bruising. My port's been healing fine, except for some horendous itching that benadryl cream seems to alleviate for awhile.

Until next time,
Be well...........

LINKS

2006-04-04T14:36:00.000-07:00

I've been wanting to post these links since I started, but being computer challenged, I just couldn't figure out how to just put them in the next column. These links are to some very giving people and websites that have been very comforting to me when I needed some answers to some questions regarding my life.

Dr. Terry Hamblin is a world renowned CLL expert. (One of fewer than a dozen.) He has given the gift of himself to some of us idiot CLL'ers and been very patient at having to repeat himself over and over and over to some of us who are either too lazy to check out the archives, or too dense to "get it," or just simply too fearful that we're unable to get the message. This man deserves to be a saint for his patience. He finally made up his own blog where CLL'ers could go for his definitive word. Oh, and he used to make housecalls! He has a terrific post on what the purpose of treatment should be. I recommend that as required reading for EVERYONE! Go ahead and google the man, and you'll be as impressed as I am.
http://www.mutated=unmuated.blogspot.com/

Chaya Venkat is a young retired person whose husband, PC, was diagnosed with CLL a few short years ago. She can cut through the medical and scientific jargon and make things clear for the layperson. Because of her efforts, (and many CLL'ers) the Mayo Clinic is doing a clinical trial right now on EGCG's effects on CLL. EGCG is a component of green tea that they've found KILLS CLL cells in vitro. If any of you get the CLL diagnosis, (and believe me, if you live long enough, I'm sure you or someone you love will get it) this should be your first stop at trying to understand the disease. Her website is a goldmine that every oncologist should be mining. http://www.clltopics.org/

This is the online support-information group that I've belonged to for the past 2 years. They're the ones who rallied around me to encourage me to get a second opinion when my old onc was recommending treatment based on the "old" gold standard. http://www.cll.acor.org/help.html/

David Arenson was the first one in our ACOR group to set up a blog, and he convinced some of us that this wasn't so hard to do. His is a lot prettier than mine, and he's a much better writer. His Nov. 18, 2005 entry about how he learned he had CLL brought many knowing nods from the rest of us. FYI, I was told 3 months after diagnosis that I had a leukemia and that I should come back in 6 months! So for the next 6 months, I was wondering what kind of leukemia I HAD. http://www.clldiary.blogspot.com

John Wagner is going through chemo right now for his CLL. He's been very supportive of me and my predicament. Somehow we share a special bond because of our mutual walk for awhile.
http://www.johncll.blogspot.com

Both John and David have links to other very good CLL sites that are probably lots easier to access from there than from here. Their links are also in the right place! ;-}

Since this is my first post for April, this should be the bottom one for April 2006, when and if anyone wants to access these sites.

You're probably wondering why I haven't posted any breast cancer links. Personally, I have not found any breast cancer sites that are half as good or as helpful as the above sites. I won't recommend mediocre. Believe me, I was certainly looking after I got the BC diagnosis. Even the ACOR list for breast cancer suffers. I found more answers in a book on BC that I found at Barnes and Noble. Even my oncologist gave me a book that had more answers than anything I could find on the internet. My experience with CLL taught me not to believe everything the doctor tells me, so it was very hard to hand over all the decisions to my oncologist regarding my breast cancer. Having a fast growing cancer forces one to really make some fast decisions. Perhaps my greatest decision was to fire my old oncologist and blindly trust my new one. Oh, he HATES me, too, because I'm ALWAYS questioning! But it's mutually respectful and SOOOO much better than the relationship I had with my other onc.

Now, how do I feel? Fatigue is getting to me. But today has been the first day in awhile that I haven't felt the need to take a nap before 4:00 PM. This constantly changing weather hasn't helped much, either. I've also discovered that some cut flowers STINK! Bless his heart, they look pretty, but this chemo must make them smell funny enough to make me WANT to get nauseated! I had to put them in the back bedroom, close the door, hold my nose as I go through there on my way to the back bathroom, and remember to close the doors behind me. Water no longer tastes like water. It has a metallic taste to it. Pouring a bit of orange juice into it, or making green tea out of it helps a little. Otherwise, all is well. I've been extremely blessed.

Yesterday the ground appeared to be moving just outside my slider window. I noticed an area just teaming with birds of all kinds. Among the robins, sparrows, and chickadees, was even a majestic male flicker. In my attempt to get a closer look, they all got spooked. However, a small sparrow defied me. He was so cute. He had some light fuzz sticking out on both sides of his beak. He looked like a bird with a set of thick, baby blue cat's whiskers. That little bird was so proud of his treasure and trotted around and looked up at me every so often. He never let go of his prize. He'd just glare at me. Daring me. He finally got himself off the ground with his booty. It was a mighty tussle! But he made it into the tree and delivered his bounty to his mate for the softest nest in that tree!

Like I've said. I've been blessed.

Round 3

2006-03-29T18:17:00.000-08:00

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

2006-03-28T23:45:00.000-08:00

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......

2006-03-21T20:53:00.000-08:00

It's gone.

Bits and Pieces

2006-03-20T06:05:00.000-08:00

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

2006-03-17T07:35:00.000-08:00

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

2006-03-15T22:26:00.000-08:00

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

2006-03-09T11:13:00.000-08:00

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

2006-03-06T21:05:00.000-08:00

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

2006-03-04T11:38:00.000-08:00

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

2006-03-04T09:10:00.000-08:00

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...