Friday, November 28, 2008

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

Sunday, November 23, 2008

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

Friday, November 21, 2008

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

Friday, November 14, 2008

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!

Friday, November 7, 2008

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

Tuesday, November 4, 2008

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