I did it!
This is my Knitting Olympic Sweater. It isn't as cute as I would have liked, but at least now I have figured out how this pattern goes together. It is quite the feat of engineering.
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February 27, 2006
February 26, 2006
And a good time was had by all
Last night was the annual Ayyam'i'Ha party at Aunt Cindy's. She claims that the reason she does this every year is so that her house gets at least one good cleaning, but don't let her fool you. She loves every minute of it -- and so do we. But seriously, we did have a good time. Here are a few more photos I won't make you work for.
You may notice that I have my hand on top of Ann's? That is because every time someone went to take a picture, she would wave at the camera. Reference the first photo. We did have a good time!
February 25, 2006
A little more detail
Well, folks, I am either 20% or 25% finished with my radiation (if my math is correct.) Here it is. I have completed 7 sessions (the first two still count) of either 35 or 28 sessions. I'm not sure which because I have gotten different answers from different doctors and haven't quite understood which it will be. I think Dr. Chang (radiology) confirmed that it would actually be 28 after all, but I am afraid to believe it for fear of being disappointed. If I understood correctly, 25 are broader to the area of the tumor, then there will be a more focused 'boost' of three more sessions to the 'tumor bed'.
I want to tell you that I feel pretty well, especially today (when I don't have to go down to the Clinic!), and I am. My energy level is not quite where it was before radiation, but it will come back. Basically all I do is go to work, go to the Clinic for radiation, come home and sleep. Except on Wednesdays when I spend the whole day down there. I have been trying to extend somewhat and stay awake in the evenings and I have been doing better. My stomach feels a little wonky mid-morning and lunch just doesn't appeal to me much, but my appetite at dinner has been pretty good. And breakfasts have been okay, too. Not great, but they go down.
I will be starting at the Gathering Place support group on Tuesdays. There are two at the same time; one for clients and one for family members. Now if I can just stay awake for it! (I hope they don't mind if I knit!) Daddy was able to drive me to the Clinic on Thursday and Friday, and I think that made a big difference in my ability to stay awake afterwards. The only day we have run into a scheduling conflict is on Wednesdays, and I think I have conquered that one with friends at work.
A special thank you to Uncle Claude for the gift of Netflix. Daddy and I have been really enjoying the movies. It really helps to distract me in the evenings. And because we can watch them when we want to, we often start at 7:30 and can still get to bed at a reasonable hour.
February 21, 2006
On the Fly
Just a quick note to let you all know that I got my pump yesterday and had my radiation, all without incident. I was very tired last night, but am back at work today. I hope I continue to tolerate this as well.
February 19, 2006
I promised you photos
Yesterday was very cold, but we still managed to have a good time. Cindy's mother, Bev, brought Gramma and together the four of us went first to a tea room in Kirtland, then on to the quilt show.
I ordered some Rooibus Belgian Chocolate tea for the table, sort of on Mara's recommendation (this was as close as I could come) and it was very delicious! I was going to buy some, but my stomach was slightly rebelling at the rich bites of dessert I shared with Cindy, so I lost my heart for it, but I will go back and get some. It is the perfect tea to serve at Feast. Rich and desserty, but no caffine. (I hope!)
By the way, I have been 'bulking up' this last week in anticipation of radiation starting on Monday. I made it up to 145 this morning! I'm so chuffed!
And speaking of chuffed, I finished knitting my Knitting Olympic baby sweater. I still have to sew it together, which I will do tomorrow while waiting for doctors, chemo, labs, radiation, etc. It is an amazing little sweater, knit all in one piece from the back of the neck down to the hem. That sounds simple, but until I actually got it off the needles, I had no idea how it would fit together. None, whatsoever.
Daddy and I made it to the Gathering Place on Friday. It was a hard trip to make for me, anyway. But good. For me, it was an admission that a) I have cancer (I spent large parts of my day trying to prove to myself and others that I am 'well') and that b) I might not be able to deal with this alone. They don't have a group specifically for pancreatic cancer patients, which is fine with me. I don't really want to be with 'those' people. You see, I'm not like 'them'! I'm well! (and I'm not much in denial, either.) Anyway, Eileen Cohan remembered Nathan and Mara from their visit there in November and says hello. (I had to tell her I was the patient and not a 'family member'.)
February 16, 2006
Back on Track
We are back on track for radiation starting on Monday. I had a full day last Friday and a half day on Monday of tests at the cardiologist's. I have no results from the tests, but Dr. Pelley called and said we are to start back with the radiation and 5-FU on Monday, so I guess he is satisfied.
I was diagnosed with P.O.T.S., Postural Orthostatic Tachycardia Syndrome, which means when I stand up my blood stays in my feet and I might faint. Big hairy deal. No treatment. Not much in the way of symptoms either. Not to downplay my 'episode' two weeks ago. It was a bit scary. And because I was sitting in a chair when I passed out, the blood didn't return to my head to revive me. Some of the tests were sort of like medieval torture, but I survived.
I must say, it does feel like the doctors don't talk among themselves and are relying on me for information. I'm pretty reliable, but it could become like a game of Whisper Down the Lane. I was a bit surprised to have Dr. Pelley asking me, what the cardiologist said, especially since all the records are on-line. I don't have access, but they do.
This Saturday, Gramma, Cindy, Bev and I are going to go to the Quilt Show together and have a tea/lunch at a sweet tea room in Kirtland. It should be fun. And we have Friday off from Lakeland (President's Day) so I think I will take the time to go the Gather Place, finally.
February 10, 2006
Into Every Life Some Joy Must Fall
And here is some of mine. Just thought I'd share.
1. When I got home from the Clinic on Tuesday, the amarylis that Gramma gave to Nathan to plant back in November was in full bloom, and I mean full. I have never seen an amarylis with so many blossoms. SIX! You can't see them all in this picture because I just couldn't get them all in. There are four on top and two more below.
2. Cindy and I went to the Lake FarmParks Quilt show yesterday. Though our quilt didn't win any ribbons, it is very well displayed. As you walk in the door, you can't miss it, with a spot light and everything.
I was going to post photos, but I can't remember how to make them small enough on the imac. I could do it on my PC, so the first one to let me know how to do it will be richly rewarded -- with being able to see my images!
And I wanted to get back to lasagna. Vegetable lasagna, to be specific. I like it. I think it doesn't like me anymore. Anyway, I made some and you can see it made Daddy happy. And now you can see why I don't make it more often. We will be eating this stuff for a long time to come, especially since we have to eat it judicously. (I wish I was a better speller!)
Thank you to Mark, Mara and Mensch for helping me with the photos. What you said, Mara, is exactly what Nathan had told me to do and I had forgotten. Thanks again to all of you.
PS I'll write about my visit to the Clinic today later. It was a long day and I have to go back on Monday. Nothing bad happened, so don't get your shorts in a knot. But I don't know what any of it means or what the ramifications are. I'll let you all know when I do.
February 7, 2006
Life is what happens while you are busy making other plans
I have heard that statement many times, and even said it myself. Well, today and yesterday, it was brought home to me once again.
Here is what was planned for yesterday: Merry would pick me up at 7 am so we could make it to the Clinic in rush hour for an 8 am lab appointment. Then at 8:30 I would have my first radiation treatment, and at 9 I would see Dr. Pelley. At 9:45 I would have my pump installed with the 5-FU, 10:45 we would be on our way back to work and have plenty of time before the 2 pm staff meeting. I would work until 5:30, then go to Painesville and teach my self-employment class until 8:30. I would only use one hour of sick time.
Here is what happened. Merry picked me up at 7 am, we made it to the clinic for the 8 am lab appointment, I went to radiation at 8:30, rushed back to see Pelley at 9, and down to the lab to have the pump installed by 9:45. So far, so good. I had to wait, not unusual. The pump was finally installed around noon. I went out to make my future appointments and while I was sitting there, I got very hot and felt nauseous and weak.
I mentioned it to the appointment-maker-woman. She went to get me a bucket. I remember staring into the bottom of the bucket and the next thing I remember is being hoisted into a bed, rather like a large rag doll, and a lot of people around me, tugging at my clothes, talking to each other over my limp body, trying to get a response from me and slapping my wrist to raise a vein to start an IV.
I can't actually tell you just what happened. I don't really know. They say I fainted. Okay, I fainted. I must have been out for about 5 minutes, because Merry said they put me in a wheelchair, then wheeled me down the hall and into a bed.
They took me by ambulance one block to the Emergancy Ward, where I stayed hooked up to monitors. Heart monitors. At 3:30 I reminded Merry that she would have to teach my class for me in Painesville, so she left. And I called Daddy to tell him to come down. I figured that he would be coming down to take me home. No, not to be. That was one of those 'other plans'. Instead, they decided to keep me overnight for observation. That meant moving across the hall and being hooked up to even more monitors.
I didn't sleep very well. The room was very warm and a nurse came in on the even hours to take my blood pressure, blood oxygen, and temperature. Then a CT came in on the odd hours to draw blood and run an ekg. And basically, they found nothing. The only thing they found to be 'unusual' was that from time to time my pulse would drop below 50. They didn't like that, but I didn't have a heart attack, so that is good news. The Observation Dr wanted me to wear a heart monitor for a month, but my radiologist (actually, the one sitting in for mine, who is on vacation) talked him out of that -- Thank God!
Daddy brought me home around 1 and I took a shower and went back for my second radiation treatment. When I got home, there was a message on my machine from Dr. Pelley saying that he wants to hold off on the 5-FU until he figures out 'my heart' (which is just fine!) and thinks Dr. Chang will also want to hold off on my radiation. Obviously, the right hand is not talking to the left. If he had called me sooner, I could have saved us a trip to the Clinic. Poor Daddy drove it 3 times in 24 hours.
I do feel a little bit as though I have gotten a reprieve. As I took what I thought would be my last shower yesterday morning, I felt like a condemned man eating his last meal. Well, I can still shower until further notice! You have to take your joy where you can find it.
February 5, 2006
Weddell Island
It was almost exactly 31 years ago that we visited Weddell Island. I'm not sure of the date, but it was shortly after we arrived in the Falklands and the days were still quite long. That would have made it summer, though summer is a relative term there. It means the days are longer and it might be a bit warmer some days. Maybe. Maybe not.
Nathan was just two years old, and I was just 23. That seems so young to me now. A group of our friends, all ex-pats, all single, childless, were planning a day trip out to Weddell Island and invited us to come. Weddell Island is an uninhabited island that has a penguin rookery on it and is sort of a nature preserve.
This rather assumes a more organized government than actually exsisted. I think it was more of a nature preserve by mutual agreement, tradition and that there were not enough people to populate all the little islands that surrounded the two main islands.
The idea was to be taken out to the island by boat, spend the day, roam around, look at the rookery, and meet the boat and go back. I don't remember what, if anything, was planned for lunch, but it was to be an all-day affair.
We set out mid-morning, dressed 'for the weather', but the weather changes constantly. I remember Nathan was wearing his denim jacket and a hat with ear-flaps that snapped under his little chin . I don't think I had any mittens on him. After all, it was summer. I was wearing a windbreaker that had been treated to be moderately water proof. There was a light drizzle. The temperature was maybe 50. Or 48.
We arrived on the beach and started across the island. I had no idea what to expect and was surprised by the tussock grass. It grew in 'tussocks', hence the name. What this means is that each plant, maybe 3 feet across, grew in a column, building on the roots from the previous years. That meant that there was little level ground. There were paths about 2-3 feet wide between the tussocks. Or you could leap from tussock top to tussock top. That is what the group choose to do. You could see where you were going and, at first, it seemed like a challenge, maybe even fun.
We leapt from tussock top to tussock top, either Daddy or I carrying Nathan. We were able to keep that up for maybe an hour. After a while it was just exhausting. Each leap was a bit of a risk, and if you slipped off the wet grass on the top of the tussock, it was a slide of about 4 or 5 feet into the mud below. Yes, the tussocks were that tall. After doing that for about an hour, we decided to walk the paths between the tussocks. You had two choices. You could walk upright and be whipped in the face by the wet blades of grass (think of a spider plant gone berserk) and still not see where you were going, or you could hunch over and avoid being hit in the face. For the most part, we opted for the latter. While carrying a two-year old.
It started to dawn on me that bringing Nathan wasn't our smartest move ever. But, in our defense, I had no idea what we were getting into, and we really didn't have anyone to leave him with. And he was there, so, of course we pressed on. We started to hear the sounds of the rookery up ahead, so knew we were getting close. The other way we could tell was the smell and the growing muck under foot. It had been muddy before, but this was 'special' mud, even more slippery and disgusting than before. It was very suffucating under the tussock. You couldn't stand up, so your back hurt. You couldn't see where you were going, so you had the feeling that you were making no progress at all. Each tussock looked like the one you had just passed and the one on either side of you. The path wasn't straight (they were native to the island, not planted in neat rows) so we could have been wandering around in circles for all we knew. And the blades (there is a reason they are called blades -- they are sharp and cut) would still whip you in the face, just less than if you tried to walk upright.
Finally, we got to the other side of the island where the rookery was. The tussock ended and we could breathe again. We stood up and stretched. This was a good break, but we still had a dilemma. We were on the other side of the island -- from where we were going to be picked up. And on this side of the island, there was no beach, just a cliff and rocks that dropped off into the sea. We had a choice of going back through the tussocks or going around the island's perimeter on the rocks. While carrying a two-year old.
The group opted for the latter. I can tell you, I had had enough of the tussocks. I just had no idea what lay ahead. At this point, Daddy took Nathan. (Thank goodness!) It probably took us another hour and a half to climb around those rocks. It was really treacherous. I was doubtful each time I had to leap or climb. Fortunately, Daddy is strong and managed to keep his balance while holding Nathan and tip toeing from rock to rock, barely reaching to make it. My heart was in my mouth most of the time.
Finally we arrived back at the beach. We were all exhausted, wet, cold, and miserable. I think there was an abandoned shepherd's hut at the top of the hill that we waited in till the boat came. At least we were out of the rain, but not warm. And I don't think we had two crackers between us. At least, I hadn't pack anything. I was so relieved to be off the tussocks and off the rocks, I just couldn't wait until the boat came.
When it finally did, it just sat there in the harbor. We couldn't figure out why he wasn't coming in with the dinghey to get us. Then someone spotted the seals. You know those cute animals they train to perform at Sea World? Those sweet-eyed, soft as silk animals? Yes, those. There were leopard seals between the boat and the beach, so the captain wouldn't come and get us. It was too big a risk. A leopard seal will tip a boat, or so we heard. So we waited. Finally the seals left the harbor and we were fetched and on the homeward journey.
History is repeating itself. Cancer has become my Weddell Island.
February 3, 2006
Wednesday is Monday
Monday is the new Wednesday. That means that my first radiation treatment will be on Monday, as per a conversation between Drs. Pelley and Chang. I do wish they had bothered to let me know. I found out this morning when I was making my 'first' appointment and the rad tech thought it should be on Monday and I was equally sure it should be on Wednesday. Oh well. I guess it all comes out the same in the end. Oh, and the ADHD squirrel nut map will stay on my tummy for the whole time. Not sure why I needed tatoos, when I have the map, but there it is and will stay. Sigh.
February 2, 2006
The Morning After
This morning I got up and looked at my tummy. It looks like a squirrel with ADD got a hold of a Sharpy marker and drew his nut/treasure map on me. I have arrows, boxes and more Xs. Two more tatoos. Now the color scheme is blue and green, the purple having been erased. Another simulation appointment on Friday. Monday is lab and Pelley. Wednesday I start radiation in earnest.
(oops! Sorry, I thought I had posted this yesterday. Well, my other simulation appointment is this morning.)
February 1, 2006
Today is Wednesday
...so you are expecting to hear from me. I meant to blog yesterday so that I am not just writing about being sick or treatments, but I ran out of steam. I do have an appointment today, but not for chemo and with no labs, so I won't have any blood counts to share with you. Today I am just going to get x-rayed and probably another tattoo, on my stomach this time. The other two are on my ribs. Truth be told, I am sort of dreading the radiation. I fear that the side effects will be more severe than from the Gemzar. I have been most fortunate with the Gemzar, but I don't think I am going to get off so easy with the radiation. I have an appointment with Dr. Pelley on Monday with labs, then appointments on Wednesday, Thursday, and Friday because the radiation will start on Wednesday.
On a lighter note, Rae has gotten me hooked on Suduko puzzles. Nathan tried to show me how to do them, but I think I was still too fuzzy. Rae and I did one together, so I got the gist. I've tried several since then, but once I make a mistake, I can't figure out how far back to go to fix it, so give up. Well, Rae sent me a book of them yesterday (Actually, it came yesterday) and they start out "Light & Easy". I'm good with those, so far. It felt so good to finish not just one, but 4 last night! Like I had really accomplished something. Well, the book will be perfect to take to radiation appointments. I will have to wait, but not as long as for chemo. Knitting was great for chemo when I was sitting in a chair for about 2 hours, but waiting 10-15 minutes? Suduko will be just fine.