Thursday, June 28, 2012

On the road

With the ascities building, the vomiting happening on an almost daily basis, my general slower pace and talk about Palliative Care, Michael and I have had conversations that maybe I'm on the road to the end. It may be a long, windy road full of wonderful surprises along the way, but it may be shorter than we want or hope. That's the bitch of this disease.

I still haven't seen the official report from my CT scan. Has the disease spread anywhere new and undesirable? I want to know how much the disease has shrunk. I want to know Dr W's opinion about where we go after the chemo holiday and how long he expects it to potentially be.

But it's scary being on the road to the end. Michael says he sees me dying a little bit every day, and as a result he dies a little bit every day too. He's noticed changes in me over the last month or so. I'm slower, I react less quickly, my eyes look different, I talk slower. Is it the disease causing these other symptoms or the residue from the cancer. It's hard to tell but it's also hard to take.

I've always been a go-getter, let's get her done kind of girl and now I can't do that. I can't even type as fast on my blackberry or my keyboard. I make more mistakes. It's as though I'm moving in slow motion while the world around me continues at it's usual (quick) pace.

I'm on the road, but let's hope this road has lots of ups on it and goes on for miles and miles.


Monday, June 25, 2012


It's hard to know when you have cancer whether a sickness is due to cancer, chemo or some other virus that anyone on the street could have given you. I had one of those situations this weekend.

It started Thursday night at 11:30 when I woke up with a sore stomach. I tried to ignore it and go back to sleep, but with no luck. I tried Gaviscon. I tried walking the house to get the gas moving and out. Finally at 5 a.m., I threw up. I then slept for a couple of hours before waking up to throw up again. I knew I'd dehydrate myself so I tried drinking water . . . and threw it up.

Friday afternoon, I called the cancer centre for advice, which consisted of drink Gatorade (even if it's a few sips every 15 minutes), make sure I urinate ever 10 hours and the colour isn't too dark., and if it gets worse, to head to Emergency on the weekend.

Saturday morning was good. I managed a piece of toast and a bottle of Gatorade, but the afternoon brought the barrage of vomiting again. I promised myself if Sunday was equally bad, I was heading to Emerg.

But yesterday, I only vomited once so no trip to the hospital for me.

I've surveyed my Facebook friends and some of them said they've had this virus that lasts a couple of days and causes severe vomiting. That makes me feel better because then I know it's something "normal" and not cancer related.

I know my stomach is small because of the ascities building up in my abdomen again, which means I don't have room for anything but small quantities of food or drink. That could add to the number of times I throw up because I just don't have the room to hold anything. And getting calories for energy has become a challenge since staying hydrated and eating require different things. I'm trying to eat toast and drink Boost/Ensure, but even that has been challenging to keep down.

So today I've consumed an Ensure and am working on a Gatorade with hopes they both stay down. And I'm going to have to do something about this damn ascities again soon. Then, just maybe, I'll start to feel better, which is the whole point of my chemo vacation.



Thursday, June 21, 2012


I've been on chemotherapy treatment for nine months straight. Dr. W says that's long enough and I need a chemo holiday. Now this holiday isn't like one of those fun ones where you stuff your bathing suit (or snow pants, as your preferences dictate) in your suitcase and head for adventure. This simply means I won't take treatment for somewhere probably between one and three months.

The objective is to measure if there is an improvement in some of the symptoms I've been experiencing: tiredness, weakness, shortness of breath, etc. If these things improve during the holiday, I'll get stronger and their culprit was the chemotherapy. However, if thing get worse, the cancer itself is causing the problems.

I was disappointed he didn't have the final report on my CT scan from last Friday. It's been written and is lost in the hospital computer system. Dr. W did a read of the images and said that while there seems to be more ascities, the disease around the stomach and other areas of my abdomen seem to be improved. So that's good news - although I would have liked to have seen the official report read by the radiologist.

So during the holiday, I'll continue to fill with ascities and need to go in for taps periodically. I'll visit Dr. W every three to four weeks to see how I'm feeling and monitor my CA-125 levels. I also have the option to call him if something doesn't feel or seem right.

We also talked about a couple of different options for treatment after my holiday. One involves an chemo pill I'd take every day and the other is a different type of chemo I'd take once a day for five days every three weeks. We'd talk more about these different treatments and what seems right for me when the time comes.

So there are options. He assured me he'd let me know when there were no more treatment options.

The goal here is to preserve (or reachieve) quality of life. I need to be able to enjoy the time I do have left on this earth. And speaking of which, I may just stuff a swimsuit in a suitcase and take a real vacation during my chemo holiday. Once I get some strength back and can get through the day without a nap or two, I should be able to enjoy one.

Here's hoping.

Tuesday, June 19, 2012

Tests, fun and contemplation

I know, I know, it's been a while since I've written. Sometimes I have nothing profound or interesting to say. But I thought I'd better get on an give you a brief update as to what's been happening.

After my paracentesis (the abdominal draining) my abs were sore for days. A thousand abdominal crunches of pain made coughing, reaching or bending a challenge. That's mostly gone now except for a pesky spot right below my left rib. But I think there's some cancer lurking there so it may be more related to that than to the actual draining procedure.

Friday brought my CT scan. I drank all the peach-flavoured radioactive juice, ate a not-so-great-tasting, pudding-like substance so they could examine in esophagus and inserted something (I didn't ask a lot of details) into my rectum to examine my bowels. I was literally full of substances designed to light me up like a Christmas tree as I was manoeuvered through the CT tube. Of course I also had to have the IV inserted into my arm so they could shoot some more radioactive dye through my veins part way through the procedure.

As an aside, I have a pet peeve. I get this port-a-cath inserted, which is state of the art and designed to handle any type of procedure, whether it's taking blood out of me or inserting various fluids into me for tests, transfusions, etc. Yet, no one except the folks in the cancer clinic know how to use them. When I asked during the CT scan, the technican assured me the radioactive dye could go in through the port, but they hadn't been trained on them. My home care nurse says she's never been trained on them. Why have this device that makes a patient's life less painful and complicated, and then don't train anyone on it. Sheesh.

After a week of tests, my family and I had a weekend of fun. We left Saturday morning and went to the Royal Ontario Museum (ROM) to take in the exhibits. I brought a wheelchair so I wouldn't hamper their progress and, as a result, I was wheeled about like a queen. Then we spent the night in Toronto, saw a greenhouse (that was right across from our hotel), visited with some friends in Oakville and then caught a bit of a concert in Burlington before making out way home. Needless to say, a restless sleep in the hotel room and all the activity had me pretty exhausted by Sunday night. So much so, I slept in until 10:30 a.m. on Monday morning. I can't remember the last time I did that. (And I still needed a nap during the day.)

Today I'm doing some much-needed catching up on paperwork and phone calls. I also have an appointment with the spiritual care worker at the cancer centre. I do believe my spirit needs some care and some guidance as I travel down this journey. This woman has been down this road with many, many individuals and couples who've been in our position. It doesn't hurt to gleen what we can from her experience.

As with every part of this cancer journey, I'm trying to sort through the advice to make the best decisions for me. Do I choose a special diet? Do I drink a "magic" tea? Do I use acupuncture, reiki and therapeutic touch? Do I stay on this particular chemo? Do I take a holiday from chemo? Do I involve palliative care at this point? Do I still have ways left to fight or should I just enjoy the time I have left? It's all so confusing - and all so life altering. Some of these decisions ARE a matter of life and death. It gives a woman a lot to think about.


Wednesday, June 13, 2012

A good drain

Yesterday Dr. Z drained 4.4L of ascities from my abdomen. In keeping with my Coke analogy, that's the equivalent of two 2L bottles and a big, thirst-quenching glass of the fizzy liquid that came out of my belly. I got the feeling he could have gotten more, because it was still flowing pretty good, but opted to stop where he did.

The procedure itself was relatively pain free. He's a skilled man with the needle. But starting last night and into today, I feel as though I've done an gut-crunching abs workout for about an hour straight. Coughing even hurts.

That's why when I threw up the first meal I've had in days during the middle of the night. I was moaning. Then not only did I throw up water this morning, I had diarrhea to boot (sharts while vomitting, not a pretty picture). So I popped some Immodium and drank some sport drink (praying it would stay down) and I think I have the situation under control.

After the paracentesis yesterday, I had an impromptu appointment with Dr. W. We talked about the fact I've been having chemo for nine month straight now and it's taking its toll. I am weak, shaky and tired, all the time. I sleep way more than I should. I'm not capable of taking care of my house and my family. I am not enjoying life.

I have a CT scan on Friday so we can take a look see at what's happening in my abdomen. If we've shrunk the tumours and they seem stable, we'll talk about stopping chemo for a month or two. He said it could be the chemo or it could be the cancer that's making me feel so shitty. He can take away the chemo to see what happens, he can't take away the cancer (darn). Then when I gain some of my strength back, we'll talk about treatment again.

Yesterday was the first time he mentioned palliative care. He would like me to start working with the Palliative Care workers because he finds the transition works better if they're brought in early. "Over time, chemo become less important and palliative care become more important," he added. "Holy crap." my brain said.

I know this is a terminal disease. There is no cure and diagnosis at stage IIIC is very bad. I am on the road to death but no one knows how long the road is or where it ends. But, I have to admit I wasn't quite prepared to start talking palliative care. Although he did say the end could be years down the road. Years sounds good to me.

Raising the whole subject, along with not feeling well, has me feeling a bit weepy this afternoon. I'm tired of being sick and tired. I feel bad for Michael (who takes care of me, and will continue to do so) and my kids because I'm not the bubbly, energetic wife and mom I once was. I feel bad for my friends who get email greetings but very little Tina time because I just don't have the energy.

Hopefully the chemo break will bring about a little bit more of the old Tina with a nice jolt of energy and interest in the world around her.

Let's keep our fingers crossed.


Monday, June 11, 2012

24 hours earlier

I called first thing this morning to see about getting my paracentesis performed earlier than Wednesday. My bloating is extremely uncomfortable and some days, I'm having a hard time keeping fluids down, let alone food.

After waiting a couple hours for the phone call, I learned the best the cancer clinic can do is tomorrow morning. Looking on the bright side, that's 24 hours earlier to feel relief from this intense bloating. So I'll take it. Hopefully the interventional radiologist will be able to get a whole bunch of fluid to make its way out of my abdomen so I can feel better and more comfortable. Having the ability to enjoy food would be an added bonus.

On the weekend, I managed to find some relief in the big blow-up pool we have in our back yard. It felt nice to have the water support the weight of the fluid for a while and the cooling waters was an antidote to the warm weather.

Overall, though I feel tired. I'm sure it's my body fighting the cancer, responding to the chemo and protesting from carrying around all the extra weight from the fluid. I'm sure I'm also still feeling some depression, despite the little white pills I pop every night before I crawl into bed. As a result, naps are still my go-to move, even though the weather is nice. It's hard to enjoy the weather when you're feeling rather low.

But I'll do the best I can and hopefully after tomorrow, I'll be a new(er) woman (not putting too much pressure on the paracentesis, am I?)


Saturday, June 9, 2012

Roly poly

Yesterday was a bad day. I couldn't seem to drag myself out of bed and I spent practically the whole day there thinking, texting or sleeping. It's been a rough few days, exacerbated by some personal stuff that's been happening in my life. So I'm sinking even deeper into the basement of post-chemo side effects.

I'm hoping today will be better but because of the ascities, I'm now throwing up a single cup of coffee. When the clinic called me yesterday to tell me about my appointment for draining next Wednesday, I should have said, "That's too far away. My body isn't keeping anything down."

I will call on Monday to see if I can get an earlier appointment, but the chances are probably slim. I could go to Emergency (and will if it gets too bad), but the chances of getting a butcher with the needle increase significantly if I don't go through interventional radiology. So I'll manage the best I can, drink Boost and Ensure, and sip away at my water with hopes I'll stay hydrated. That may be the reason I have to go to Emerg in the end, dehydration.

I'm so tired of being sick. Last weekend it was low red blood cells, this week it was post-chemo side effects and now it's my roly, poly fluid-filled ascities belly. I'm near the breaking point again. Can't I just get some relief?

Your tired friend,

Thursday, June 7, 2012

Down, down, down

I suspect today is the day I'll start heading to the basement. It's the typical procedure, and I'll spend the day trying to read, thinking, sleeping and laying around. I know it's a waste of a beautiful day, but it's how I cope. Today, tomorrow and part of Saturday will be my bad days this week because of the switch to chemo Monday instead of chemo Friday.
Luckily, I have the support of my family who allows me the time and space I need to cope. I also have a lot swirling around in my mind these days, which doesn't help the depression situation any better. But I'll do what I have to do and get through this.

I haven't heard from Dr. W's office yet about a change in plan of attack so I assume we're going with the three week schedule (until I hear otherwise). I also haven't received a phone call about my paracentesis (fluid draining) process. Hopefully today I'll hear from both of them so I can move forward.

Two steps forward, one step back. That's the way it feels these days. But hopefully, those forward steps will get me to I want and need to be - remission.

Wish me luck over the next few days. I have a feeling I'm going to need it.


Tuesday, June 5, 2012

Day one post chemo

Everything went fine at chemo yesterday. I was in relatively on time and out by 3 p.m. I got the big dose of taxol and we'll see how it goes with the side effects over the next few days.

I ran into B, my chemo nurse and showed her my big, round ascities belly. She agreed it was at the point where paracentisis would be a good idea. So she's putting in the request, which usually takes a few days because it's with the interventional radiology department instead of with a doctor in the usual clinic area. But my belly is full of scar tissue and pockets, and therefore the docs need to see exactly where they're going with the ultrasound to get as much fluid out as possible.

I found out yesterday my CA-125 is 64. Up slightly from 60, but minor fluctuations apparently happen. So while it's not moving in a downward motion I want, I'm stable at a decent number. I get a CT scan next Friday to see what's going on in my abdomen. I'm anxious to hear the results of that.

I must have been tired yesterday because despite all the noise and activity of the chemo suite, I actually managed to sleep during treatment yesterday. And then my family let me sleep in this morning and I didn't arise until 10:15 a.m. (I can't remember the last time I slept that late!) It must have been all the excitement and lack of sleep during the weekend that left me exhaused. Despite all the sleep, that's the one side effect I feel right now - tiredness.

I'm also vomiting a lot more these days. Probably from the ascities shrinking my belly. I think I may have to switch some of my meals to Boost or Ensure instead of food - especially dinner - to see if I can prevent the middle-of-the-night vomiting trips to the bathroom. Hopefully the paracentesis and the chemo will shrink the fluid so the throwing up side effect goes away again. I was doing great for the last month or so and I'd love to get rid of that side effect again.

By the way, the port-a-cath I had inserted a couple of months ago works great. It's easy to access, relatively pain free and I have the freedom to go swimming, go in the hot tub, bath, etc. I've had some problems with infection and cysts around the insertion site, but that seems to be clearing up now too. One of the chemo nurses said he hated my PICC line and loves that I now have a port. Despite the fact it sticks out slightly and I still have scarring, I love my port too.

So today should be a good day for me before I decend into the basement. I'll see what I can accomplish between naps (yes, I'm still going to need naps because it's the one consistent side effect and I'm not sure my hemoglobin has risen up anywhere near the normal level). If I can plan dinner and make a few phone calls, I'll consider today a success.


Monday, June 4, 2012

Ironically, just as I start to feel perkier from the blood transfusion, I'm going to get a big dose of chemotherapy to knock me back on my butt. Today is chemo day, and while I'm more energetic and less weak, I'm still tired. Perhaps it was all the excitement from the weekend.

It was Michael's high school reunion, and while he did most of the activities with a friend who arrived from British Columbia, I did go to the dance on Saturday night. It was a lot of talking and not much dancing because the entertainment was provided with a big-band type of band. Not exactly what you remember from high school when you went there in the late 70s and early 80s.

I also didn't sleep well this weekend, so I have a hangover feeling about me (despite not allowing a drop of the alcoholic stuff to pass my lips). Luckily, I'll most likely get a bed for chemo today and I may be able to doze a bit during treatment.

I'm reluctant to get chemo again because I'm feeling better, but I'm also anxiously anticipating it because I'm hoping it will calm down the ascities that's filling my belly and causing me to throw up. Not a great set of circumstances. If the chemo doesn't relieve the problem, I'll have to phone and schedule paracentesis, the belly draining procedure.

So it's going to be a long day in the chemo suite; approximately six hours from start to finish. But Michael's coming with me and naps will help fill the time. Fingers crossed all goes smoothly.