Been Awhile

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

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

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!