A Visit With Dr. Cutie . . .

Yesterday afternoon I got a call from my oncologist's office wanting to change the time of my appointment today. My immediate response was, what appoitment???? I hadn't been notified!

Well, turns out they probably mailed the notice and either it got hung up in the Christmas mail or it got delivered to the wrong house (our postie delivers at least one envelope to the wrong house twice a month; we usually get mail for the folks north of us). Anyway, we were able to get ourselves together and get down to CancerCare for this morning and had a visit with Dr. Cutie.

It was just a follow up to see how I'm doing with the chemotherapy. All in all, it's going pretty well. However, the radiation oncologist has decided to postpone radiation therapy because of the size and location of the tumor. He wants to wait a while for the chemo to shrink the tumor, then reassess the situation. The problem at the present time is that the tumor is fairly large so they would have to irradiate a pretty big area right around my stomach, and I would probably suffer more serious side effects than what I get now with the chemo.

Dr. Cutie says to consider this not a setback, but a reconsideration of the situation, and probably a good thing.

I will be going for a scan, either a CT or an MRI but likely an MRI, after this round of chemotherapy ends (last treatment is January 12, then I take a one week break and start another round of chemo). This will allow the Eviction Team to have a good look at whether the chemo is giving Charlene any problems. Let's hope it's making her sick as a dog.

I also got a new pain prescription - slow release morphine. I take two pills a day and can take Percoset as well if I need it. I'm hoping this drug will work well. Last week I had a couple of pretty miserable days, painwise, and actually took TWO Percosets at once because one just didn't cut the pain. Dr. Cutie informs me the street value of the morphine drug is $10 to $15 per pill. It's supposed to be good stuff! I guess I'll find out tonight when I take my first dose.

-- Lori

Fourth Chemotherapy Treatment And Other Interesting Stuff . . .

Yesterday's chemo treatment went very much like last week's, and so far I have only had a little nausea to deal with. I should have posted a bit more about the itch last week. It came on again but was very mild and was pretty much gone after a couple of days. Let's hope that this week I don't get any itch at all! (Fat chance!)

That's all I have to say about chemo. I have something much more interesting to talk about.

Those of you who know me well might know that I am and have always been a great lover of horses and have never got over the yearning to own a horse that started when I was just a kid. As young kids, my sister and I did have ponies; ponies are not at all the same thing, especially these particular ponies. They were ex-chuckwagon ponies and were not very friendly or rideable so they scared us half to death. It was a real trial to try to do anything with them, and none of the adults around us seemed interested in helping us learn how to handle the ponies. So we never really got to experience what it was like to have a good, dependable, friendly, rideable horse.

My sister has given me a gift that, even now, I hardly know how to thank her for: she has given me one of her horses.

I would like you all to meet KS Bar Winchester, A.K.A. Charlie Bear and known familiarly as Bear.


He is a young horse, not yet trained for riding, but he's got a lovely, playful disposition and he seems to like me. The first time we met he tried to hug me to death. I got up under his neck to scratch his breast and shoulders and he kind of pinned me under his neck and head and gave me a good squeeze. It was rather startling, but I guess he liked the scratching and didn't want to let me go!

Hope you all are having a good holiday season!

-- Lori

Third Chemotherapy Dose . . .

My third dose of chemotherapy was yesterday afternoon. So far, no nausea or itching. I'm sure the itch will return tomorrow, but we'll just have to wait and see.

The chemotherapy went very well. With the PICC line in place, life is a lot easier beause there are no nurses trying to stick me with needles. I just go get blood taken from the line, they test my blood to make sure it's healthy, then they order up my chemo concoction, hook me up to it and away we go. It takes about an hour and a half, all told, if I get in right away.

I made a major tactical error yesterday. I carry my MP3 player with me so I have something to listen to while I'm being infused. The Old Boot accompanied me yesterday, and he was looking rather bored while we were waiting for the blood test results, so I handed him my MP3 player and turned on some music for him. Big mistake! He wouldn't give it back! That was okay, though - it kept him amused and out of trouble, and I had some tatting with me to keep me amused. However, in future I must remember not to offer him the MP3 player if I want to use it myself.

I went out for a wee walk this morning to see what the weather was like. What a change from the last few days! This morning -18 feels quite balmy compared to what we have been having! Iknow it isn't going to stick around long, but at least we are having a small break from the deep freeze.

I don't have much else to say. Things are moving along slowly, and I have good days and not-so-good days. Still trying to put on some weight, still trying to eat as much as I can, which some days is not much. I am still waiting to hear when the radiation will begin and I expect it will be around the end of January when I start the second round of chemotherapy.

Have yourselves a good day!

-- Lori

Itchy Again . . .

Well, the itch is back again; so far the rash isn't too bad. I believe the rash gets worse when I scratch (That's kind of a "well, duh" statement, ain't it?) so I am using the immense powers of my mind to drive the itch away and to keep me from scratching. I tell myself there is no itch; therefore, there is no need to scratch.

Yeah, right. What I'm really doing is going nearly crazy keeping my hands off my itchy spots. What I would like to do would be to get some tranquilizers and go curl up in a corner and sleep for three days or so until the itch subsides.

Sigh!

-- Lori

Chemotherapy - Week 3, Session 2 . . .

Yesterday was my second chemotherapy session, and it went much, much better than last week.

I now have a PICC in my left arm above my elbow. For those who don't know what a PICC is, it's a permanent line that goes into a vein in the arm, then follows the vein up and into the main vein leading to the heart. Last week, they tried three times and were unsuccessful at putting one in; this week it went in easy as pie. What this means for me is that I no longer have to have nurses poking away at my eeny weeny veins every time they have to draw blood or give me a chemo treatment (or any other kind of IV, for that matter).

The only negatives to having a PICC is that I have to keep it dry so I can't take any hydrotherapy (hot baths). I have to make do with showers and wear a plastic sleeve thingy over the PICC to keep it dry. A minor inconvenience to be sure.

My blood count was much better this week; much, much better! So I was able to have my second chemotherapy treatment. With the PICC in, they were able to give me the entire treatment in half an hour as opposed to a whole hour. Since the chemo drug goes into the large heart vein where there is lots of blood flow, it gets diluted very quickly. In the small arm veins, they have to slow the flow way down because there is less blood flow and the chemo drug can actually burn the vein walls.

So far there have been no side effects to the chemo treatment. I am not the least bit nauseated or itchy. Last time the itch showed up a couple of days after the chemo, so I'm keeping my fingers crossed that it doesn't come back. The rash has just nicely cleared up.

During this bitterly cold spell, I am thinking of all of you that have to get out of bed in the dark early morning hours, bundle up into warm winter clothing, warm up your cars and wend your way to work, hoping that there will be no stalled cars or accidents blocking your paths. I don't have to do that, being on medical leave; but I'd sure rather be doing that than what I am doing. Count your blessings, folks.

On the upside of the cold spell, my sister bought me a present for which I am very grateful: red wool, cotton lined one-piece long johns with a button flap in the back. Man, they are so warm and cozy. And sexy, too! She also bought me a set of white wool two piece long underwear, much more appropriate for medical visits. Even when I have to leave the house I can be well layered in clothing and stay nice and warm. This is important since I have almost no body fat to keep me warm and I get chilled right to the bone.

Here's hoping the cold will break soon.

My next chemo appointment is on December 22; I know most of you will be off for the Xmas break, but I will update my blog and let you know what's going on right through the break.

Have a peaceful holiday season!

-- Lori

Chemotherapy - Week 2 . . .

Monday was supposed to be my second chemotherapy session, but things have gone awry.

This is a long entry, folks, so get yourselves a fresh cuppa and prepare to be enthralled by my tale of things medical.

First off, I have to backtrack a bit and update what happened after the first chemo session. I had written that I had no nausea or other side effects from the first session, and I didn't have any until Thursday morning when I woke up with the realization that an old enemy had returned - ITCH! I was itchy! Really itchy, particularly around my neck and shoulders at first, then moving down all across my back and my front, stopping at my hips. A quick look in the mirror showed that I had a rash everywhere I was itchy. Okay, gotta check the fact sheet for the chemo drug. Yup, there it is - rash, with or without itch. My rash looked sort of like a measles rash. Personally, I would have been happier with nausea rather than an itchy rash.

Thursday night, the second side effect showed up - FEVER. Fortunately, the fever hovered between 37 C (normal) and just a touch over 38 C, and was usually right around 37.5 C, not terribly hard to deal with. I had been told that if I developed a fever of over 38 C that lasted for over an hour, I likely had the start of an infection - something that should be looked at right away - but my fever never lasted above 38 C for more than about half an hour. On Friday, I talked to my oncologist's nurse and explained what was going on, and she said the fever was very likely caused by the chemo drug itself. Oh lovely. By Saturday night, the fever had disappeared.

So Monday rolls around. I have a full schedule for Monday and have to be at CancerCare for 10:30 AM for a CT simulation, a step in getting me ready for radiation therapy. It was really simple and painless EXCEPT for the tattooing! I wasn't expecting to be tattooed in hospital, but I was. What they do in a CT simulation is set you up on the CT bed the way you will be set up on the radiation therapy bed then run a few tests to line you up, mark all the settings on the bed (how high your legs are elevated, whether your arms are above your head, etc., then they tattoo little green dots on you. I now have three green dots down my front and two green dots on each side which they will use to line me up on the radiotherapy bed. These are permanent tattoos, but I am told they will fade with time. Oh, joy.

Next, on we go to the third floor chemotherapy area to have the PICC line put in. I had a PICC put in in hospital; it took the IV nurse one try and it was almost a painless procedure, so I'm expecting an easy, 1-2-3-done experience. What do I get? A hard, "1 try, 2 tries, 3 tries and we still can't get the PICC in" experience! ARGH! This was pretty painful, too, because I had lie still in a not too comfortable position while nurses jabbed me trying to thread guide wires into my arm veins (they were taking turns, but still!). And I had to hear the comments about how tiny and rolly my veins are. Yeah, I know that, that's why I'm supposed to have this PICC put in!

After an hour, they gave up. They are going to try again this coming Monday to see if they can get one installed. If not, they are suggesting I have a port put in. A port is a doohickey that goes near your collarbone and feeds directly in the vein of your heart, but it has to be put in by a surgeon so it takes three to four weeks to get one put in. I actually think a port sounds like a better option for me in the long run because it requires less intensive medical maintenance, but we'll see if they can PICC me on Monday.

After all this, we finally get down to the last task of the day - chemotherapy. Bad news - my leukocytes are too low so they can't give me the chemotherapy. Leukocytes are your white blood cells that fight infection, and chemotherapy drugs tend to kill the leukocytes, leaving the patient very vulnerable to infections of all kinds. Some other blood components are also low, so they scheduled me to go back on Tuesday for some IV therapy.

Yesterday, I was at CancerCare from 8:30 AM to 2:30 PM and spent all of the intervening time having stuff dripped into me. Not a bad way to spend the day if you're prepared for it, and I thought I was. I had some tatting with me, my MP3 player, and a book. First of all, I couldn't tat because they put the IV line into the back of my left hand, making it useless. Secondly, my MP3 player battery was totally dead, even though I had checked it the night before. This is a new MP3 player; I think I may have accidentally turned it on sticking it in my purse. Grrr. Thirdly, the book I thought I had in my purse got left on my bed. So I amused myself with ancient copies of National Geographic and Reader's Digest.

Hopefully my next chemo session will happen this coming Monday. I'm keeping my fingers crossed.

So that's what's going on with me. Hope all of you are having a much better time than I've been having!

-- Lori

First Chemotherapy Treatment . . .

The first chemotherapy treatment is over and done, and I feel fine.

The chemotherapy itself was not difficult. Basically, I went to the third floor of CancerCare and checked in. Then a nurse came to escort me to a treatment room (there were four stations in the room I was in) where I sat in a recliner and the nurse put in an IV line. For me, that's the most trying part because I have eeny weeny veins and nurses usually end up poking around for a vein. Most uncomfortable. It's actually rather funny what nurses will do to try to get a vein. My nurse yesterday wrapped my arm in a warm blanket, then rubbed and slapped the inner arm until she finally got a vein about halfway between my wrist and elbow. It took about five minutes!

The nurse told me what to expect when the chemical (gemcitibine) hit my system, made sure I was cozy and warm, and then went to get my drugs. She gave me two anti-nausea tablets, then started the IV.

For about 45 minutes, I just sat there listening to music on my MP3 player and relaxed. I had taken my tatting with me, but because of where they placed the IV, I couldn't move my left arm and therefore couldn't do anything but sit quietly.

After the chemical had all dripped into me, I was disconnected and sent home. Easy. I was rather surprised that there was seemingly no effect from the gemcitibine - no funny taste in my mouth, no feelings of dizziness or nausea or anything else.

Next Monday I will be going in for my second treatment and at that time they will also install a PICC line so I won't have to be poked and prodded every time they need to draw blood or infuse me with gemcitibine. Here is a description, better than I can describe it:

A PICC is a long, thin, flexible tube known as a catheter. It is inserted into one of the large veins of the arm near the bend of the elbow. It is then slid into the vein until the tip sits in a large vein just above the heart.

The space in the middle of the tube is called the lumen. Sometimes the tube has two or three lumens (known as double or triple lumen). This allows different treatments to be given at the same time. At the end of the tube outside the body, each lumen has a special cap, to which a drip line or syringe can be attached. Sometimes there is a clamp to keep the tube closed when it is not in use.

I had one of these lines while I was in the hospital and it sure made life easier. No more poking around for veins, just open up one of the lines and draw blood or insert an IV.

After the treatment, The Old Boot took me home. I was exhausted and had been feeling really tired since Sunday, so I had a nap when I got home and slept really well for a couple of hours. I took another anti-nausea pill even though I wasn't feeling sick - Dr. Cutie said to take them for about a day after each treatment regardless of how I felt.

Anyway, today I feel bright and energetic, so I'm going to try to catch up on some housework. Doesn't that sound like fun.

-- Lori

Hang Onto Your Hats, Folks, Cuz Here We Go!

First Chemo session tomorrow at noon.

Wish me luck!

-- Lori

My Latest Visit with Dr. Cutie . . .

Any day you get to talk to a cute doctor is a good day, and yesterday was even better because we also had a cute intern to talk to as well!

Somebody at the Administration Offices told me to keep my eyes open for cute interns while I was in the hospital. I didn't see a single one. Lots of cute male nurses (I had one night nurse that was hubba-hubba cute and SMART - he really helped me with some problems I was having in hospital) but no interns. Well, a couple of the women were pretty, but I don't swing that way.

But yesterday we had Intern Handsome review my case with us before we saw Dr. Cutie. I found it a little unnerving. I was sitting there thinking to myself "This is one nice looking young fella." Then the word YOUNG became the operative word. He was young enough to be my son! I wondered if he had a girlfriend because he and my daughter would make a very attractive couple!

Anyway, on to the results of the MRI. Basically, the MRI was a baseline so that down the road, the docs can compare the size of the tumor before chemotherapy with the size after some treatments. So there wasn't a whole lot to talk about regarding the MRI. We did get one thing clarified. We had thought there was a cancerous tumor on my liver as well. There wasn't. When my surgeon spoke of biopsying a cancerous spot on the liver, it was actually just near the liver, not on it. I do have a couple of cysts on the liver but they aren't cancerous, and my liver is clear. Yay!

I asked the docs if I could have a picture of Charlene. That threw Dr. Cutie for a bit of a loop, but he promised me to get me a printout of one of the MRI pictures. It's probably not a request they get very often. I think I might have it framed. Maybe I'll hang it on a dartboard and use it for practice. I just wanna see the b**** so I can focus some hate at her.

Dr. Cutie had said at the last appointment that he would be presenting my case to his colleagues, so we asked how that had gone. Apparently, my case incited quite a discussion! Because my case is unusual, i.e., I am very young to have pancreatic cancer, I have always been pretty healthy, I don't have the usual risk factors, there was a lot of talk about what sort of treatment I should have. One upshot of the discussion is that the CancerCare docs are going to formulate a protocol for pancreatic cancer treatment. They currently don't have a protocol in Manitoba. Across Canada, treatment varies depending on where you are. Some provinces treat with chemotherapy and radiation together, others just stick with chemotherapy. In the US, chemo and radiation are almost always used together. Here in Manitoba, it has been the practice to treat just with chemotherapy.

However, Dr. Cutie suggested that in my case, because I am young and healthy otherwise, chemotherapy and radiation together were an option for me. I was quite surprised since I knew that chemotherapy along with radiation therapy is not standard practice in this province, and because it hasn't been proven to be more effective than chemotherapy alone. There haven't been any really good randomized studies done, so it's kind of unproven. We decided that it would be wise to investigate a bit, so Dr. Cutie had us see the radiation oncologist that he works with. Enter Dr. Xray and his intern!

Dr. Xray's intern went over the procedure for radiation therapy with us, checked me over, and had me sign the permission forms. This doesn't mean I'm having radiation, it just means they can get the paperwork and other preparatory things started. Radiation therapy will involve five weeks of daily radiation doses, and the side effects will likely be digestive upset, some sunburn-like skin irritation, maybe some weakness and fatique. I would start the chemotherapy and complete the first round of eight weeks, then the radiation and chemotherapy would be done together for five weeks, then I would be on chemotherapy only after that.

I haven't entirely made up my mind yet, but I am certainly leaning toward having the radiation therapy. Gotta do some research and thinking before I decide. It would sure give Charlene a run for her money, though!

The other thing I had to discuss with Dr. Cutie was pain control. As the incision heals and the nerves knit themselves back together, I am in progressively more pain. I usually start my day feeling good and almost painless, then the pain increases through the day and my bedtime, I'm pretty bad off. Last Sunday night was the worst - I just couldn't get comfortable and was in such pain that I woke up three or four times during the night whimpering. I usually don't whimper! It ain't my style! But the pain was pretty intense.

I had a few Percocets left from before surgery, so for the last few nights I have been taking one before bedtime. They take the pain away almost completely, and they send me off to slumberland. I was a bit concerned that the doctors wouldn't want to prescribe me anything as strong as Percocet, but I was wrong!!!! Dr. Cutie had absolutely no problem with prescribing me more, and suggested that I keep a pain diary by recording the pain on a 0 to 10 scale throughout the day, recording when I take a Percocet, what the effect is and any unwanted side effects, etc. He also said if the Percocets were not sufficient they would look at giving me Oxycontin, a formulation with the same medication as Percocet (oxycodone), but in a time-release pill.

So here I am at home with my bottle of Percocets waiting to hear when my chemotherapy will begin, and considering the radiation therapy. Oh, I also have to figure out what to feed my people for supper tonight. Gee, sounds like I am gonna have an interesting day!

Have yourself a great weekend!

-- Lori

A Cacophony of Clunks . . .

The MRI scan has been done!

The Old Boot and I went to HSC Friday night for my MRI, and arrived about half an hour early. All of the vendors that set up in the main hallway there were gone, there were hardly any people around, and the hospital was quite quiet. Usually when you go there during the day, the main hallway is like a shopping mall with vendors selling handbags, jewellry, and other gift-type stuff, and it's noisy and crowded. The only place open was the gift shop.

We found the MRI department very easily and only had to wait about twenty minutes before I was called in. I got changed into the standard gear (IV gown, robe) and had the usual prep done (insertion of an IV line for contrast medium), then was ushered into the MRI room.

I was expecting a bigger machine. I don't know why I expected a bigger machine, but I was rather surprised at how small it was. The nurse and technician got me positioned on the bed, put a block under my knees, a pillow under my head, and a heated blanket over me, then stuck earplugs in my ears to help block out the noise. They also put a band around my chest to monitor my breathing. The instructions were pretty simple: "We'll tell you when to breathe and when to hold your breath for the actual scans. If you panic, holler out; we'll hear you." Okay, that sounds easy enough. They started the bed moving into the machine and left.

So here I am, inside a narrow tube with very little wiggle room. My first thought was "This feels like a coffin!" My second thought was "Don't be an idiot; they don't put lights in coffins." There were two lighted strips running the length of the tube, thank heavens.

The test starts: "Breathe normally." I hear clinking and clanking. "Take a deep breath in and hold it." More clinking and clanking. "Okay, breathe normally through these noises." Thump, thump, thump. "Take a deep breath in, and let it all out. Hold your breath." Clink, clank, tappita-tappita-tappita.

And so on, for about half an hour. I was really quite surprised at the variety of noises an MRI machine makes.

The technician realized I was able to go for twenty seconds with my lungs deflated and, since this gets better scans, she kept having me deflate my lungs. This doesn't sound terribly hard, but try doing it yourself. It's easy to hold your breath for twenty seconds with your lungs full of air, but a lot harder when your lungs are empty. Your body's automatic response is "Oxygen! Suck up some oxygen, for heaven's sake!!!! We're dyin' here!!!!"

The last couple of scans that were taken required contrast medium. With a CT scan, the contrast medium has the effect of giving your body a hot rush. This contrast medium just gives you a funny taste in your mouth. I found it tasted like Orajel or novocaine and only lasted for a few seconds.

Anyway, the MRI is now done and I see my oncologist on Thursday for the results.

An Update to Friday's Post

If you go to YouTube, there are several versions of Mars, Bringer of War. This is, I think, the best sound, and since it's just a still picture, it loads quite quickly.



There are seven movements to Holst's The Planets suite. Another one I really enjoy is Jupiter, Bringer of Jollity. Here is the YouTube link:
http://www.youtube.com/watch?v=3B49N46I39Y

You'll have to copy and paste the link into your browser because it won't let me add a live link to this clip. Watch the conductor's face on this one - he really lives and breathes the music. If you have a good ear for music, you will probably recognize parts of this piece because it has been used in many films; in fact, a lot of bits and pieces from The Planets have been used in films as background or mood music.

Also, a note to those of you who, like me, love words. The Roman gods had many names. Jupiter was the main god of the city of Rome, and he was also known as Jove, as in the interjection "By Jove!" We also get from his nickname the word jovial, meaning good humoured, marked by jollity and conviviality.

-- Lori

Another Week Come and Gone . . .

Here we are, Friday again.

It's funny how little the days of the week mean when you're not working. Fridays used to be important: "Yay, no work for the next two days!" But now a Monday is just the same as a Friday. The only way I can keep track of the days is by what my kids and husband are up to and by what's on TV in the evening. Sad, really. And quite boring.

Wednesday night was TCI's fall concert. It was terrific! The grade 11/12 band performed one of my all-time favorite pieces called "Mars", one of the movements from "The Planets" by Gustav Holst. It's such a powerful piece of music, with a strident, driving rhythm and a melody so loaded with menace that it fills you with dread. You can almost see the deadly machines of war in front of you and smell the smoke and stench of death all around you.

Doesn't sound like a nice piece of music at all, does it? And it's not. But it's moving and makes your heart pound. If you have never heard "The Planets" and like classical music even just a little bit, I recommend it.

Tonight I go for my MRI scan at Health Sciences Center. I already have an appointment next Thursday to see Dr. Cutie and get the results.

In the weight department, I gained back the one pound I had lost, so I'm exactly the same weight as I was when I started taking the pancreatic enzymes. This is a good thing, although I would be happier if I had gained a few pounds instead of just reclaiming one.

Oh, well, all things in good time.

-- Lori

I'm sittin' on the dock of the bay . . .

Watching the tide roll away
Ooo, I'm just sittin' on the dock of the bay
Wastin' time
-- Otis Redding

I haven't updated this blog since last Friday, mainly because I didn't have much to say. I was stuck in wait mode again, plus I was rather tired out from my houseful of people on the weekend.

My friend Sandy from Toronto arrived last Thursday afternoon and we had a pretty good weekend. Since I had just started taking the pancreatic enzyme pills that Thursday, I was still rather short of energy, tired out quickly, and needed naps every afternoon. I'm sure Sandy would have had a better time had I been a bit more lively. We did get out to Stonewall to visit my sister, her husband, and their horses. We got horsy smelling in the process, what with petting them and letting them nibble on our jackets, and had a thoroughly nice time.

On Monday evening, both Sandy and my mom flew home, so I ended up spending a couple of hours at the airport - how exciting! - and I even drove both ways! (My mom gave me her "Are you sure you're up to this" glare when I climbed in the driver's seat, and I said to her, "If I can't drive TO the airport, I won't know if I'll be able to drive FROM the airport.") So the house has been emptier and quieter than the first few weeks since my surgery.

I haven't done a whole heckuva lot, read three books, puttered around, sorted a few things out, blah blah boring boring. However, I have been monitoring my energy levels and weight. Since starting the pancreatic enzymes that I take with each meal, my energy level has started to come up. My body is basically saying "Yes! Fat! Now we have stuff to burn!" I haven't put on any weight, but I haven't lost any either, which is a good thing because the only place I have any fat left is between my ears. Lord help me if that starts to go. Fortunately, the enzymes seem to have no bad side effects. I just gotta remember to take them.

As I said before, I have been stuck in wait mode again, waiting for an MRI appointment and word of when the chemotherapy will start. I got a call this afternoon from Dr. Cutie's nurse with the MRI appointment: Friday, November 21, 7:30 PM. It's good that it's in the evening because The Old Boot will be able to accompany me without taking any time off work. He won't be very happy with that, I'm sure; he likes taking time off work.

I'm actually looking forward to the MRI. I've had just about every other imaging procedure done, from ultrasound to CT scan to endoscopic ultrasound to chest Xray, so the last big adventure left in that area is the MRI. I hear it can be tough for people who are claustrophobic, and I do sometimes have flashes of claustrophobia, but that usually only happens when I get stuck in a closet. Goes back to my childhood when some lovely little fiends - er, friends - locked me in a closet and would not let me out.

Now all I have to wait for is the start of chemotherapy. Hopefully that will soon follow the MRI. Will keep everyone posted.

-- Lori

PS: Have a great weekend, everybody!

My Oncologist . . .

. . . is a real cutie!

I have to apologize to everyone because I had fully intended to update my blog yesterday after my appointment with CancerCare. What with the appointment, the weather, the WSO/RETSD concert yesterday afternoon at KEC, and the excitement of having my friend from Toronto flying in for a visit, I just did not get a chance!

Yesterday The Old Boot and I met for the first time with the oncologist who will be supervising my chemotherapy. This time he was indeed in, but of course it took some time before we got to see him.

First we were interviewed by a nurse who checked my height and weight (for those of you who are interested, a measly 106 pounds), and reviewed my history. Then we were interviewed by an intern and an observing medical student, who went over the whole history again and in addition asked about my current medical status, including how much pain I am in, how well I'm eating, how I'm feeling generally, etc. And finally, the introduction to Dr. Cutie.

I'm calling him Dr. Cutie because I don't think it's fair to post his real name on a public forum such as a blog without his consent.

Anyway, Dr. Cutie, the intern and the medical student all came in and we had a nice long chat about the proposed treatment plan. The first thing to do is to have an MRI so the team has a baseline of the tumor's size and the status of the local lymph glands. That should take about two weeks to get done. Chemotherapy should start in about three weeks. Unfortunately, two clinical trials have just closed so I'm not eligible for them, but another one may be opening up in a few weeks. If the trial is appropriate for me, the team may delay chemotherapy until I can join the trial.

The specific chemotherapy for me is not going to be as punishing as I had feared. According to Dr. Cutie, it's fairly well tolerated by most people, with mild flu-like symptoms occurring after each dose. The first round of chemo would be once a week for seven weeks, then a one week break; the following rounds would be on again for three weeks and a one week break.

My biggest concern regarding chemo has been my weight loss. I need to have some margin for those days when the chemo makes me too ill to eat. My last weight measurement in the hospital was 122 pounds, so I have lost 16 pounds since then which isn't too surprising because I was unable to eat much for quite a while. Now I can eat a fairly good range and amount of food every day although I have to eat several small meals because my stomach is smaller than it was. The big problem, however, is that I am not absorbing any fat because my pancreas is still not behaving and producing the enzymes required to digest fats. It's gosh-darn hard to eat enough fruits, vegetables and grains to put on any weight! Gotta have some fat!!!!!

Dr. Cutie agreed with my assessment of my weight situation and gave me a prescription for pancreatic enzymes in pill form that I take at each meal, so hopefully I can start putting some weight back on. I took the first one at supper last night. I don't know if it was the enzyme pill or the day's excitement that made my digestive tract go into a tizzy. I didn't experience any nausea, but my tummy gurgled a symphony for about four hours after I ate and I felt sort of bloated and uncomfortable. A nice long walk probably would have alleviated the problem but no way was I going out in that yucky wind last night! Wandering around the house doesn't have the same therapeutic effect as a brisk walk.

That's all for now. Keep warm, everyone!

-- Lori

What Beautiful Weather . . .

I can hardly believe that today is the fourth day of November and that we are having such gorgeous, warm fall weather!

For me, the nice weather is a particular blessing because I can go out for my walks without being bundled up to my eyes against the cold, and I can still wear my comfortable walking shoes instead of my clunky winter boots.

Yesterday mom and I went out for a bit - had to pick up some stuff - and we got back to the house about 11:30. Mom suggested that a nice nap in the warm sunshine would do me some good, so I got an old blanket and a pillow and proceeded to have a lovely bask in the backyard, the sun streaming down and warming me, the little bit of breeze that could reach me ensuring that I didn't get too warm. I even had company: our old mutt, Mack, curled up beside me in the grass and one of our cats joined me on the blanket. I stayed outside until about 1 o'clock when the clouds started to move in and obscure the sunshine. Ah! Lovely!

How often do we Winnipeggers get to do that in NOVEMBER???

-- Lori

First F*** Up . . .

And it ain't mine.

Today The Old Boot and I headed out of the house at 8 AM to get to CancerCare in time for my 9 AM appointment. I am always amazed at the amount of traffic headed into the downtown; it makes me nervous and I get rather snippy with The Old Boot because he insists on driving my car and I am not a good passenger in my own car. I am much better if I'm driving. The traffic doesn't bother me anywhere near as much.

After a tense drive over the CancerCare, it was a relief to get to a parking spot, walk to CancerCare, and find the clinic where my appointment was.

When we checked in, the receptionist couldn't find my paperwork, so we were asked to sit down. In a few minutes, a nurse comes out and, after apologizing, tells us there has been a mistake and that the doctor I am to see isn't even in the office today. Well, consarn it all anyhow!

Having worked in medical offices, I know that once in a while, someone falls between the cracks, especially when you have doctors that work at more than one location, such as the oncologist I was to see. It is just the way things go; no matter how careful people are there are sometimes miscommunications between the offices, and there is simply no point in getting worked up and angry about it. So I was gracious, told the nurse it was not a problem, and she promised to get us booked in again as soon as possible.

The time at HSC was not totally wasted; I took a thank-you card up to the staff on GH-3 where I recovered from surgery, and we popped in to visit The Old Boot's aunt who works at HSC.

Once we got home, mom had already had a call from the doctor's office rebooking my appointment to next Thursday, November 6, same time, same place - one more week to find out what the next steps will be.

-- Lori

Just a Few Thoughts . . .

On Monday mom and I went shopping, I to get my new cell phone activated and she to have a browse in the bookstore for recipe books aimed at feeding a cancer survivor well. She found a book called Crazy Sexy Cancer Survivor, by Kris Carr. It's the second of two books and is sort of a workbook for the first, the first being Crazy Sexy Cancer Tips. Well, the highly twisted, demented and irreverent sense of humor of the book matches my own so I just had to go back yesterday and buy the first book!

Most of yesterday I spent reading Crazy Sexy Cancer Tips (I was kind of tired out from the play Monday night and needed a lazy day). I laughed, I cried, I thought deep thoughts, I plumbed some personal depths that haven't been plumbed in years. I have definitely found a resource that will help me plan out some of the next steps of my cancer journey, a resource that is lighthearted but serious, as opposed to one book I started to read that was kind of doom and gloom, do-this-or-you-die heavy. Yuck. Don't need that in my life. Never finished that book.

Tomorrow is the big day, the preliminary meeting with my oncologist at CancerCare. I woke up at about 3 AM and couldn't get back to sleep so I did some research on the commonly used chemotherapy drugs used for pancreatic cancer. I don't do this research to scare myself, although that sometimes happens. I do it so I can ask intelligent questions of the doctors and nurses, so I have some background knowledge as a framework for moving forward with my medical posse.

I even did one of the things we patients are always told to do: I made a list of questions to ask the doctor. So sometime after the appointment tomorrow, I'll hopefully be posting some more news about the next steps on my path.

Stay tuned!

-- L

And Now For Something Completely Different . . .

Last night, my mom and I had a rare treat - we went to a play!

Through the kindness of friends, we were given two tickets to see Pride and Prejudice at the Manitoba Theatre. So away we went. The Old Boot was kind enough to drop us off and pick us up so we didn't need to worry about parking and then getting into a cold car to get home. The play ran from 8 PM to about 10:40. By the middle, I was getting sleepy because I have been hitting the hay at about 9 PM, but a couple of times I rested my head on mom's shoulders for a bit, closed my eyes, had a mininap, and managed to stay for the whole thing.

If you're a Jane Austen fan, especially if you love Pride and Prejudice, then you're probably like me and are rather sceptical of any production that tries to stuff all the action of the book into two and a half hours. But the playwright did not too bad a job and got all the important bits in. I did miss some of the characters and scenes that were left out, though. I guess I'm a purist at heart.

Anyway, if you have an inkling you'd like to see the play, I can tell you that it is enjoyable and rather humorous.

-- Lori

CancerCare Continued . . .

Once again I am impressed with how quickly the medical system is working for me.

I got a call from CancerCare Manitoba yesterday saying they had an opening on Thursday, October 30, at 9 AM, and would that be convenient for me? Heck yeah, of course!

How's that for quick? We went from waiting for weeks to waiting for days! Yippee!

Having never been through this process before, I am not sure what to expect from the first visit, but I am hoping that the doctor will be able to lay out a treatment plan for us, give us information on the chemo drugs they will be using, the side effects I can expect, the schedule for appointments, and all that interesting and important stuff. I just hope I am recovered enough from the surgery to be able to start the chemo soon. I will of course be taking along my Rock, The Old Boot, to the appointment, and will of course update this blog to keep all of you dear readers in the know.

-- Lori

CancerCare Manitoba . . .

I have finally heard from CancerCare. Got a call from the referrals clerk yesterday to let me know they had received the referral and my file, and that a doctor will be reviewing the file and then an appointment will be arranged for me.

When I asked how long that would take, the clerk said it usually took weeks, but that in my case she thought they would hurry things up a bit.

Here's hoping I won't have to wait too long.

-- Lori

Readjusting . . .

Good morning, folks!

I thought I had better post something today to let you all know that things are going pretty well. I am eating a little better every day, gaining a little more strength and stamina every day, and am generally on the mend.

However, I am having some difficulty readjusting to life at home, mainly because I have to behave so differently. At home, I'm used to doing this, doing that, cleaning, cooking, etc., but I find myself unable to do much. So I am struggling (weakly) to just let others take care of me and not get too wound up when I can't do something that I ordinarily would do.

In hospital, it was easy to let others do everything - the setting is so different. All you have to do is relax, do as you're told, and trust in the people around you to help you get well. The hospital has its own rhythm, and that also helps because after a few days, you know when bloodwork is done, when you'll get your Heparin shot, when breakfast, lunch and supper are served. You just rely on the hospital rhythm to choreograph your day.

At home, I find I want to fall into my old rhythm but I can't, because I'm an "invalid". So I am working toward building a different rhythm for this time: several short walks a day, regular meal times, naps in the afternoon, that kind of thing. But it's hard.

-- Lori

I'm Home!

Even though Tara already wrote a post to let everyone know I got sprung from the hospital today, I have to write my own to say a few things:

1. Man, am I glad to be disconnected from the pumps and the hoses and the monitors! I can walk around without dragging any machinery! I no longer have people asking me about my urine, gas and stool output. (Sorry, I know this is a bit graphic, but it gets tiresome having nurses ask when was the last time you peed. Every time I saw a nurse, s/he was sure to ask about some bodily function or other.)

2. Man, am I glad to be home! Just to bask in quietness after the continuous background roar of hospital noises is a treat. Plus, I got home to a very unexpected surprise: The Spice Moms and a couple of friends in cahoots with my mother had redone my bedroom - repainted, recurtained, rearranged and really nicely done. The bathroom was redone too; not too sure about purple in the bathroom but it will grow on me, I'm sure.

3. Man, am I glad I have so many friends! So many came to visit in the hospital, so many sent cards or gifts or flowers, so many sent messages of hope and good cheer, that my spirits were always buoyed up. I feel such gratitude for all of this support. Thank you, everyone.

-- Lori

Home Sweet Home!!!

Hello, this is Tara. Mom's youngest daughter for those who don't know! I am here to inform everyone that Mom is no longer in the hospital and is now home. So I hope some people check this before going to the hospital to visit her XD

. . . I don't know what else to say so I will end it here. . .

TOOTLES!!!

straight from the horses mouth

I only suffered minor bruises during todays visit; but I must say mother is getting stronger with each day that passes. I dread the day she is out of the hospital. Surely she will beat me to a bloody pulp...

This is a note wot my mom wrote for her fans!

"Today is a red-letter day.
1) Ten days post-op and I have finally eaten something like real food - porridge! (Hospital porridge is only 'something' like real food)
2)Nasogastric tube came out this morning. No more rubber hose a-danglin' from my nose! And hopefully, no more sore nose.
3) Staples - all 27 of them - are now out. It feels odd not to feel that little pull every time I breathe or move, but I'm sure I'll adjust quickly".


I have been asked to post more photos of the foliage sent our way. Here they be.








How lovely!
--Kyra

Hey Doc, What's For Lunch?

Hi everyone.

It is October 13 (Thanks Giving Day), ten days from the day of surgery. I'm sure that by now you are wondering what has been going on in the recovery room of our Lori. I am happy to announce that Lori is growing stronger by the day and is quite capable of being a real nusiance in the hallways of the ward. She is able to move herself around with relative ease and has pretty much weaned herself off of the morphine and is seeing the world through the eyes of a rehabilitated junkie once again.

Yesterday marked the day of Lori's first taste of food. They claimed to have served her a consome, jello and a cup of the house tea. In reality, the consome actually smelled like chiken soup, but the jello is terribly bland and the tea tastes like reheated mop bucket water.

Today Lori was hoping to have an actual bowl of chicken noodle soup. But I don't think she got to. She did manage to get another broth, a jello that I'm sure you could use as a tile grout and some ice cream that was actually already past its expiration date by Lori's observation. She said it tasted old, like it had that freezer skin outer layer taste to it. MMMMMMM yummy.

We have also reached another milestone in Lori's recovery. Today she got her staples out and the incision is healing very nicely. Cindy Smith (a very dear friend of Lori's) was present at her side to witness the removal of the staples. I would have loved to have been there for that one, but hey, you snooze you lose, right? Lori got the staple remover as a keepsake,they were just going to throw it out anyway. What a memento. I know exactly why she got it though. She wants to pinch me with it, I'm sure.

Lori wants me to tell all of you how very much she appreciates all of your visits, your cards, your flowers, shawls, prayer blankets and baskets of beautiful gifts that you have lovingly given her. You are all so very important in her life, and although it is not often enough said, you must know that you are loved. Thank you all so very very much.

As we see it, if Lori continues to heal at the rate that she is going,it should not be long at all before we can bring her home to relax in the comfort of her home. The doctors say that she could not go home till she can eat. Well, it might be hospital food, but it's still concidered eating, so we are nearing our release date at a very good pace.

Well, thats my update for now. I hope you all enjoy my musings and are able to slip in for a little visit to help break up Lori's day.

I am sincerely

The ole boot

"Flowers"

Nana tells me that I am supposed to post a photo of these lovely flowers. Here they be:





And as always, here is an amusing youtube video for your enjoyment.



--Kyra

after the surgery

Hi everyone. This is Lori's husband. More than likely known to most of you as "the ole boot". And here is my update as requested by lori.

Sorry that I havn't done this a little earlier,but I have been a little tired from the late nights and have not been able to get near the computer.
On October 03 ,as you all know,Lori had her surgery for her cancer. The original plan for this surgery was to go in,look around and remove the cancerous areas. The immediate culprit for eviction was the tumor on the pancreous, the head of the pancreous and possibly any little offspring that charlene had during her visit.
Once this was done a little replumbing and poof,Bobs yer uncle ,we are done.But, unfortunately,I am sad to say,this was not the case. After goin in,the surgeon found
yet another little spawn of charlene on the side of the liver. A biopsy of this little bugger was sent to the lab and was also labelled malignant.
While the surgeons were inside they looked further and diagnosed that the cancer had also spread to the lymph nodes.This unfortunately,is a little more serious than we wanted to hear and had an unwelcome affect on the surgical proceedings.
After discovering the additional complications,the surgeons had to inform us that they could not complete the surgery as planned. The cancer had spread further than they had anticipated and they had to do a lesser procedure than hoped for.
The surgery that was completed included the redirection of the bileduct from the large intestine to the small intestine to alleviate the pain that Lori was having which will help in her recovery.They also used alcohol on some of the nerves to deaden them in an attempt also to relieve more agony while Lori trys to restrengthen herself for the upcoming battle.
The truely sad part of this is that charlene and her little demons remain unwelcome guests in the temple which is Lori. The Drs decided that because of the degree of the spread of the disease ,the eviction of charlene and her demon spawn would not help the outcome and would only increase the post surgery pain and recooperation time.
At this point we must now look ahead to the possibility of alternative methods to
deal with shrinking the tumors to a manageable size and possibly turn the tables to remission.
We are now looking at our options and concidering chemotherapy as the next step in
this battle.
At this writing,it is Oct 06 and Lori is recovering well. Her post surgery pain is lessening each day and she is able to take short walks down the aisles with the aide of a walker and a very handsome and loving husband.Each day seems to bring some strength back and motion and movent comes a little easier.
At this point,I would like to say how very impressed we have been with our Drs and nurses throughout our ordeal. With each little piece of information gained,a new part of the team came on board in full force. We have in Manitoba a truely magnificent team of Drs, nurses,coordinators,secretaries,and volunteers that have shown the true meaning of professionality and compassion to us and all of those that I heve met and seen during these past few weeks leading up to today.
The communication between the different areas involved in putting together an attack plan on charlene and her demon spawn was absolutely incredible. Appointments,scheduling,bloodwork, mri's,surgery, all made at breakneck speed due to the severity of the situation.None of this could be done without dedicated , professional,and caring people,which we seem to be fortunate to have an abundance of in our Manitoba Health care system.
Well, this is my first ever blog entry and I hope that this puts clear where we are in serving official eviction notice to charlene and her demon spawn.I will try to keep you posted more frequently as to Lori's condition and any new ideas,plans or concerns .

I am sincerely

The ole boot

Recovery

I still don't know what's going on, but mum's recovering from her surgery. She's not as screwey as she was in Friday, which is nice.

Thanks for all the comments, as well. It's good to know that so many people are rooting for my mom.

I promised her I'd sabotage the crap out of her blog, so here's something I think that EVERYONE can enjoy.



--Kyra

Hi Urrvabody

Don't get all excited; this is Kyra, Lori's firstborn.

Here's the deal: I don't know what the deal is. Mum had her surgery yesterday and when I got to the hospital I was informed that it "didn't go too well": something along the lines of the cancer had spread to her lymph node? Please don't get all excited, or read too much into this particular blog, because I have no idea what's going on. All I know is that they couldn't get rid of the cancer.

Here is a video for your enjoyment. If you care about our family, you will watch the entire thing.




--Kyra

Last Post Before Surgery . . . .

Surgery time is finally just around the corner.

It's hard to believe that it has only been a little over five weeks since my GP told me I had pancreatic cancer. It feels like it has been five months.

Charlene gets evicted tomorrow!

As I said in an earlier post, my People will be updating this blog in my stead for the next two weeks at least. I may write something up and ask them to post it, but generally what they post will be their own words. Having them take over the blog will be interesting for me, as well, because I won't have access to a computer for a while and I'm already wondering what sorts of things my People will write.

When you post a comment on the blog, my husband will automatically be notified. Also, he has access to my personal e-mail account and will be checking it for me. If you have questions, please feel free to leave a comment or e-mail, and I'm sure he'll get back to you.

One more sleep!

-- L

Two More Sleeps . . .

I am still having good success with the Percocet. No side effects so far and the pain control is great! Being relatively pain free is sure helping me prepare for surgery because I have more energy and actually feel pretty good both physically and mentally. Getting good sleep helps immensely too, and I have had dreamless, deep sleeps the last two nights.

I have already made a list of things I will be taking with me into hospital and have started packing. When I start packing too soon I have a tendency to take way too much stuff with me so I have selected my smallest suitcase and vow that when it is full, that's it - no more stuff!!! If there is anything I desperately need, my People can always bring it to the hospital for me.

Today will be my last day at work for a while, and we really don't know how long I will be away. This surgery seems to have a different healing timeline for everyone so it is very hard to estimate exactly how long I will be off work. Also, I don't know much yet about what will be happening after I have recovered. I know I will be having chemotherapy at some point but until the surgeons get Charlene the heck outta there and see exactly what kind of a malignant thing she is, what kind of damage she may have caused by squatting in my ribcage, and most important, if she has sent any nasty offspring to other parts of my body, they can't really make firm plans for follow up and chemotherapy.

So at the moment, I have only one major thing to concentrate on - the surgery. And all I really have to do is get myself to the hospital on time, let the medical members of my Eviction Team do their thing, then follow their instructions for getting myself healed up.

Easy!

Two more sleeps.

-- L

Pills . . . (Part 2)

I have never truly understood until the last few weeks how energy draining it is to be in constant pain. Perhaps it's something we can't learn until we experience it for ourselves. And even though the pain I am in isn't excruciating, it still sucks up energy and leaves me feeling wrung out.

Yesterday I saw one of the doctors who works at my GP's clinic because my own GP didn't have an opening. I was prescribed Percocet and started taking them yesterday afternoon. They are working so far, and I don't seem to be experiencing any side effects. Yay! One of the side effects the doctor warned me about, however, I hope to experience - euphoria. I think I could use some of that!

Three more sleeps!

-- L

Pills . . .

My specialist gave me some painkillers on Thursday and I started taking them Thursday afternoon. I needed to get off the Aspirin because it is a blood thinner, and needed something stronger than Tylenol.

Well, the new pills worked great! No pain! For about six hours.

Then the nausea started. About ten seconds later the projectile vomiting started.

Ah, just nerves, I thought, so I took another dose at the appropriate time.

More nausea followed immediately by vomiting. After about the third go-round with the vomiting, I started feeling kind of weak, lightheaded, and dizzy. Plus, the pharmacist had warned me that the pills would make me sleepy. They had the opposite effect on me and I was awake most of Thursday night. I got about two hours of sleep, from about 4:30 to 6:30 AM Friday morning.

So Friday morning I check out the medication monograph on the Internet. Side effects: nausea, vomiting, dizziness, faintness, rapid heart beat, sleep disruption and some more side effects that I didn't get. And I really felt lousy Friday. I had to leave work about 11 AM because of the number the drug and the lack of sleep was doing on my brain. Couldn't think, straight or sideways. Felt just bloody awful.

Back on Tylenol 1s. As long as I can get through the next four days, I know I'll be okay because they'll give me really good, zonk-me-out drugs in the hospital. They'll have to. After all, they're gonna rearrange my innards!

After getting home Friday I had a quick one-hour nap then was off to the HSC to see the anaesthesiologist and get checked over for surgery. All is good to go.

-- L

Charlene Gets Evicted October 3!!!!!

Today was the big day to see my specialist and get my biopsy results.

Bad news first: the tumor is definitely cancer. It's the most common type of pancreatic cancer, an adenocarcinoma, which can be quite agressive.

Not so bad news second: the tumor doesn't appear to have infiltrated any important bits of my innards, such as the bile duct, the arteries, or any other organs.

Good news: They gave me some better pain drugs to help me cope with the stupid ache from Charlene leaning on my bile duct. I took one around 12:30; am currently feeling quite painless! The pharmacist warned me no alcohol with this drug. Now I desperately want a gin and tonic! Even a beer would do! I haven't had even a sip of alcohol since June, which isn't a stretch for me, but I tend to crave alcohol when I know I can't have it. Sigh!

Best news last: I am scheduled for surgery on October 3 - that's one week tomorrow. Get ready to wave bye-bye to Charlene!

Those of you who know me well know that I could tell you all the gory details of what they will do during the surgery. I find things like this fascinating, and it's part of my nature to need to know exactly what will be done to evict Charlene. But not everyone wants to know the intricate details so I won't inflict them on you. If you're interested, google Whipple Procedure. You'll find lots of gory details, but be forwarned that it's kinda gruesome.

What I will say is that I will be in the hospital for from two to four weeks depending on how well I heal. Since they will be rearranging parts of my digestive system, I won't be released from the hospital until I can eat without fear of those rearranged parts coming undone. Then I'll be at home for a few weeks and will start chemotherapy at some point. A lot depends on how quickly I recover from the surgery, so those details will come later.

The blog will continue while I'm in hospital because I will be handing over the task of keeping it updated to my People. My one child in particular seemed to be gungho about doing some communicating on my behalf.

To all of you that have taken the time to call or drop me an e-mail, leave a comment, send me a card, send chocolate (thanks especially to JM for OUTSTANDING dark chocolate), send me blankets and shawls to warm my spirits, pray for me or simply think of me, a great big thank you! It can be hard to keep one's spirits up when life throws cancer at you, but every kindness from my friends has made my journey thus far a little easier.

-- Lori

And Now For Something Completely Different . . . .

For those of you that haven't seen it yet, I present some footage from my summer vacation that I took with my kid's videocamera. I can't figure out how to embed the link, so you'll have to copy and paste this into your web browser:

http://www.youtube.com/watch?v=_1FKEQnI9Wk

My kid added the titling and uploaded it for me.

Not much to report . . .

Since I am stuck in waiting mode until Thursday when I see my specialist, I really don't have much to report.

So as a public service, here are the signs of pancreatic cancer. As you can see, the symptoms are very general, and that is why pancreatic cancer often isn't diagnosed until it is too late to be treated. Just as a note, I never experienced jaundice; my liver enzyme levels went way high, but not the bilirubin. Bilirubin is what causes the jaundice, and my bilirubin levels have been normal on every blood test.

Also, a common symptom mentioned is nausea and vomiting. I never had either, I just have a complete lack of appetite and very rarely feel hungry.

Because the symptoms are so very general, people are often diagnosed with other digestive problems before anyone thinks to check the pancreas for cancer.

Pancreatic cancer often is called a "silent" disease because it typically doesn't cause symptoms early on. The cancer may grow and spread for some time before symptoms develop, which may be so vague that they are initially ignored. For these reasons, pancreatic cancer is hard to detect early. In many cases, the cancer has spread outside the pancreas by the time it is found. When symptoms appear, their type and severity depend on the location and size of the tumor.

Common symptoms may include:

- Jaundice — If the tumor blocks the bile duct so bile can't flow into the intestines, jaundice may occur, causing the skin and whites of the eyes to turn yellow, the urine to become dark and the stool to turn clay-colored.

- Pain — As the cancer grows and spreads, pain often develops in the upper abdomen and the back. The pain may increase after a person eats or lies down.

- Weight Loss — Cancer of the pancreas can also cause unintentional weight loss. This is often due to an inadequate intake of calories because of nausea, vomiting and loss of appetite.

- Digestive Problems — Digestive problems may occur if the cancer blocks the pancreatic juices from flowing into the intestines, which help the body break down dietary fats, proteins and carbohydrates. Stools may be different than usual and appear pale, bulky or greasy, float in the toilet, or be particularly foul-smelling.

Biopsy Results . . .

I talked to my specialist's office today about my biopsy results and about my climbing liver enzyme levels.

I will be seeing my GP to have my liver enzyme levels checked.

I will be seeing my specialist on September 25th for the biopsy results.

The itch hasn't been too bad today; I noticed that my face just started to get itchy around 3:30 or 4 PM, which is later than I noticed it yesterday.

As for the biopsy results, I myself am certain what the results were, so I'm not bothered about having to wait more than a week.

The Itch is Back . . .

I managed to have a whole week and two days without either taking antihistamines or being incredibly itchy. Lemme tell you what's been happening.

I have been taking Aspirin for the pain and inflammation of my liver since my GP diagnosed it in August. At our specialist appointment on September 4, I thought the doctor told me I had to get off the Aspirin and start taking Tylenol. Makes sense. Aspirin acts as a blood thinner and will make you bleed a lot more if you are cut. Tylenol doesn't do that.

The last Aspirin I took was that Thursday morning; I switched over to Tylenol that afternoon and continued to take it up until last Thursday morning (September 11). Every time the Tylenol wore off, the pain was coming back stronger. At first I just thought it was in my head; then after the biopsy on September 8 I thought it was the effects of having a gastroscope stuck down my throat and a needle poked through the wall of my duodenum. But Tuesday night the pain was very strong, and got worse all day Wednesday.

Wednesday I decided I needed something stronger and the doctor had said I could take Tylenol 1s (codeine - yum!). I bought some. The first dose sure took away the pain, but the pain came back stronger. Before bed I took two more and the pain went away again. About three in the morning, I woke up in near agony. I could FEEL my entire liver because I could feel the pain radiating in and around it, right around my right front, side and back.

It was a terrible night.

I took another two Tyelonel 1s and decided I had to try something different. I decided to call the specialist's office and ask if there was something else I could take for the pain. When I called, the nurse told me it was no problem if I took Aspirin, as long as I stopped five to seven days before the operation.

Okay, so good, back to Aspirin. The Aspirin worked within the hour and took the pain away better than the Tylenol had (or maybe there was some placebo effect working - ya godda believe in the medicine!). Anyway, since Aspirin is an anti-inflammatory, it makes sense it would help relieve liver inflammation. And since TYLENOL has to be metabolized by the liver before the body can use it, it seems to me it might just make an inflamed liver worse.

Anyway, upshot of all this is that the stupid itch has come back, probably because my liver became more inflamed from the Tylenol, and that has driven my liver enzyme levels up again. Even worse, the itch is not bad on my feet this time - it has concentrated on my hands and my FACE!

If you have never had an itchy face (and I mean an itch like a hundred thousand mosquito bites spread over your chin and your cheeks) count your blessings.

Last night I started the antihistamines again. I am hoping to get away with Benadryl at night only, because the itch is certainly not as bad as it was in July.

Still waiting for biopsy results.

The Story So Far . . . .

This story actually goes back a bit, so bear with me.

In June, I had a pretty hectic month: eldest daughter graduated from high school, big retirement and long service party to organize (big job), plus the usual end-of-school-year stuff to deal with. June is a tough month for me and I'm always glad when July rolls around.

My folks came up for daughter's grad, and my mom didn't think I was in ill health at the time, just a little tired and stressed, but that's understandable. And I had lost some weight.

July brought an unusual problem for me: pruritis. Pruritis is a medical term that just means itchy skin and doesn't convey any idea of the itch I experienced. It was so bad I was waking up at night scratching. I wanted to tear my skin off! The worst areas were the soles of my feet and the palms of my hands where it felt at times like I had bugs crawling underneath my skin, a twitchy, creepy-crawly, oh-gawd-when-will-it-stop itch. I was bruised all over from scratching, and once scratched a spot on my foot until it bled.

I also was suffering from a lack of appetite but didn't really realize I wasn't eating and was continuing to lose weight. I just felt miserable all over

The obvious cause of such an itch would be an allergy to something so I tried an antihistamine. It worked but left me in such a mental fog that I was just barely functioning. So I went to the clinic and saw a doctor, got a different kind of antihistamine and some advice about not using scented soaps and laundry sheets and stuff, but there was no change. Except that I was sleeping EVEN LESS because the antihistamine wired me up so tightly.

I made an appointment at the end of July to have a physical with my family doctor, who ran through the whole list of allergy dos and don'ts again, plus a gave me a different regimen of two anithistamines, one for the daytime and one for the night. The odd thing about the itch was that there were no hives and no welts except marks I left when I scratched too hard. The doc also decided to go on a little fishing expedition and ordered a wide battery of blood tests. She didn't seem to concerned with the weight loss.

The new antihistamines made a big difference and masked the itch well PLUS I was able to sleep. Oh, sleep! What a blessing those who sleep easily and well take for granted.

The blood tests were back in a week or so and did turn something up. My liver enzyme levels were way up. Way, way, WAY up. I had hepatitis.

The doctor ordered more bloodwork to see if we could figure out what was causing the hepatitis, with the most likely cause being Hepatitis A. There are other causes, such as the Hep B and C viruses and autoimmune hepatitis.

She also ordered an ultrasound, saying to me that if the bloodwork came back with positive results, we would cancel the appointment.

Two weeks later, the bloodwork came back negative for Hepatitis A, B, and C, and the blood test for autoimmune hepatitis also came back negative a few days later. My liver enzyme levels were dropping but were still very high.

I went to the ultrasound appointment on August 27 and it was quite interesting to me because I had never had one before. The sonographer, however, seemed to concentrate more on the area between my ribs than on the area under my right ribs where the liver is located, which I thought was odd, but what do I know about taking ultrasound pictures of someone's liver? After the ultrasound, the sonographer asked me to stick around so he could show the results to the doctor on duty, then a while later asked if I could stick around for a CT scan. A little red flag went up in the back of my mind.

I had the CT scan. Except for the vast quantities of water I was required to drink, it was not uncomfortable and was an interesting experience, especially the contrast die they injected into me. HOT FLASH! I'm too young for them (ha!), but I'm sure the contrast die gave me a good idea of what they'll feel like.

The little red flag became a great big red flag the next morning when I got a call from my doctor's office asking me to come in that afternoon. I went in knowing they had found something pretty serious, and, expecting the worst, I assumed it was cancer.

Sometimes assumptions are right.

The doctor told me the ultrasound had found a mass on my pancreas consistent with carcinoma, and the CT scan had confirmed it. Pancreatic cancer.

Well, hell.

I was expecting liver cancer. Pancreatic cancer, I knew, was pretty much a death sentence. Low survival rate. Not good.

I don't know I managed to keep my equanimity while I was in my doctor's office, but I somehow managed to get a good grip on myself and kept holding on. While I was sitting in her office, my doctor called the local go-to specialist for this condition and talked to him. He told her he would see me the next week and that I might even be in for surgery the week after (that would have been this week - talk about fast). He also asked for a couple of blood tests so my doc gave me a lab requisition and I went off to get more blood drawn.

A week later, on September 4, 2008, I saw the specialist. The Old Boot and I went to HSC to meet him. I was totally prepared for him to walk in and tell me I had three to six months to live. He didn't.

The growth on my pancreas, he said, most likely is cancer. There is a very small chance it is not. It hasn't metastasized. This is exceptionally good news, because pancreatic cancer is one of those dreadful cancers that lies hidden and silent, giving only vague indications of its presence, until it is too late to remove it. People are often diagnosed with all sorts of other digestive ailments before anyone thinks to check for cancer of the pancreas.

I'm lucky. My cancer leaned against the bile duct to my liver and partially closed it off, causing hepatitis (so I really do have hepatitis). The hepatitis caused the unbearable itch that send me looking for medical help. The ultrasound my doctor ordered to get a better look at my sick liver found the growth. Yippee for me!

So the specialist booked me for a biopsy to see exactly what we're dealing with (Is it cancer? Is it a benign growth? If it's cancer, how aggressive is it and what type is it?). I had the biopsy on Monday, September 8, and I hope to get the results next week. I am also to be scheduled for surgery - a Whipple procedure - in October but won' know the exact date until the last week of September.

Some people might think I'm treating this situation lightly with my "Yippee" a paragraph ago. But honestly, it's how I feel about it because I spent a week thinking that I had six months at the outside to live and feeling unutterably sad and miserable. I started planning my funeral. I wrote my own eulogy. I mourned the fact I wouldn't see my younger daughter graduate next June, would never see my children get married, would never see grandchildren, would never (insert milestone here). Heck, something as inconsequential as not living long enough to see the Winnipeg Symphony Orchestra perform Beethoven's Ninth Symphony next April made me bawl my head off.

I have had a reprieve. The executioner has been told to put his axe away for a while. I have cancer, yes, but I have OPERABLE cancer. It will be a fight but I will survive. I feel confident of that. And I can't help feeling pretty "yippee" about it.

Why a blog

A lot of people have set up blogs in the past little while to communicate easily with family and friends. Although I could set up a website, it's a lot more work; blogging is much easier.

So what is this blog all about? Two weeks ago yesterday, I received a diagnosis of pancreatic carcinoma (cancer) from my family doctor. My husband and I kept this information to ourselves for a week, but in the past seven days, we have been telling people what my situation is.

This blog is a central information center where people can check in and find out how I'm doing.