Thursday, September 29, 2011

A little more patience

The poem, the prayers and perhaps even a poop dance or two helped. I'm going again. It doesn't feel like it's often enough because I still have that backed-up feeling and eating solid food causes discomfort. But I feel marginally better.

I suspect there's more to my abdominal discomfort than the food moving through my system too slowly. I'm hoping the stealthy ninjas of the Regorafinib are attacking the cancer cells, causing them to shriek, swear blue streaks of nasty gas and convulse wildly before succumbing to their painful death. That explanation would make the bloating, rib and back pain, and cramping acceptable. Short-term pain for long-term gain.

That's one of my biggest fears right now, the long-term gain will never come. I've felt pretty crappy since I started filling with fluid in June. Oh, I've had good days and okay days, but I've also had really bad ones. After awhile, when the bad days outnumber the good ones, it's tough. Then I wonder, "Is my health going to recover? Am I ever going to feel really good again? Is this my new reality? Should I be thankful for the pretty good days and hours, celebrating those?"

In other words, am I heading down the road where I won't get better again? That's a really tough question.

But then I think, chemo worked before and Dr. H is convinced the toxic cocktail will work again. Sure, I felt really, really crappy when in treatment, but I had some good days. When treatment was done, I recovered and felt good. It may not be the best option to give me a lot of time before a reoccurence, but it gives me some good time to have fun, travel, celebrate, enjoy and be with my family and friends.

But I've chosen to try the Regorafinib route, which leaves the chemo as a back-up plan. Theoretically, it makes sense to try a drug that specifically targets three pathways in the cancer cells to kill them. It seems advantageous to destroy only cancer cells, rather than all rapidly-dividing cells. I also believe in trying new therapies, because those smart scientists are going to discover something amazing to beat back and conquer cancer. I also believe this clinical trial gives me another, different way - other than chemotherapy - to attack the aggressive scourge in my abdomen. I believe it can give me more time. And a longer period between reoccurence means more time for those brilliant researchers to make a breakthrough.

But it's hard to be patient and optimistic when feeling yucky. (Compounded by niggly thoughts this is my new reality.) Since I haven't felt well in months, it's also hard to believe I'll feel better again. But I have to hold onto hope my doc will help me find a balance with the Regorafinib and my quality of life will improve.

I need to dig deep inside myself and find a little more patience to keep going.


Wednesday, September 28, 2011

Vacation week

The bottom line
The Regorafinib side effects rank high enough on the debilitating side-effect scale they're reducing my dose for the next round. While I'm disappointed I won't get the full one-two punch of its cancer-fighting properties, a balance between treatment and being able to function is paramount.

I have to agree. Quite honestly, some days I just want to cry.

Appointment update
Yesterday morning, when I woke feeling unwell, bloated and blistered, I thought the timing of my appointment in Hamilton was ideal. I knew Dr. H would check me out throughly, identify any problems and correct any major medical maladies.

I went down the list of side effects I'm experiencing, and talked about the bloating, cramping and pain I'm  experiencing in my abdomen. I also drew attention to the shaky, spaced-out, generally unwell sensations I regularly feel - and had in abundance yesterday morning. We wondered if the Regorafinib was affecting my blood sugar levels or whether these symptoms are a side effect of the Dexamethasone, which I'm now off.

The lab results revealed my blood sugar levels are fine, as is my potassium and liver function. In fact, all my lab levels are okay except my lipase (pancreas function), which is a little high. The pancreas processes drugs for the body, so it could be protesting all the different meds I've been taking. Perhaps it will settle down. Regardless, I know my next blood work, and all the subsequent ones, will continue to check for any changes.

Speaking of blood work, the study criteria changed and I now need weekly blood tests to check my liver function - and unfortunately, they have to be in Hamilton. I buried my head in my blistered, sore hands at the news and then bucked up. Even if it means figuring out time off work and driving three hours for a 10-minute blood test once a week, I will do what I need to do to be part of this clinical trial. I'm placing my hope in this drug and I need to do whatever is necessary.

Dr. H's biggest concern was my hands and feet. The debilitating aspect of the blisters isn't acceptable for the study protocol. He also seemed very interested my fingers are swollen and the skin has thickened into callouses (in addition to the blisters in the inner joints). This phenomenon means I can't feel the tips of three of my fingers on each hand, which could be dangerous if I'm not careful. Angie was concerned this side effects was neuropathy that could be permanent, but Dr. H assured us it's a temporary side effect while I'm on the drug.

While my hand and foot problems are a pain and somewhat painful, they're more of an inconvenience. When I think about all the side effects I have and could experience, it could be so much worse.

Now, my abdominal issues are a bigger concern for me, even though the doc didn't seem to be worried at all. He didn't hear any fluid in my abdomen (and I had zero drainage again yesterday) and my breathing is clear. Perhaps because I have ovarian cancer and my abdomen is full of those fluid-filled cysts, the Regorafib is attacking them, causing them pain and making them explode. That would be an acceptable source of the pain - dead cancer cells.

Of course, my lack of bowel regularity (although I have been going sporadically) contributes to the feelings of discomfort. I'm also really bloated. My throat is balking at the thought of eating solid food once again and uncomfortable gas rolls through my belly regularly. If I could get the abdominal issues back under control, I'm sure I'd feel so much better.

I mentioned in a previous blog, the big gush of fluid that drained on Monday. It was quite disguisting, full of a white, mucous substance. I drained 200 mL+ and now all fluid production seems to have stopped again. I'm almost convinced a cyst burst and its revolting contents came gushing out, but of course, that can't be confirmed. Maybe it's wishful thinking, but that's the hopeful explanation I'm adopting.

Now it's vacation week from the drug. Today is the second day I didn't pop the four pills after my low-fat breakfast. Hopefully, the side effects will quickly subside. I have a wedding this weekend and I'm really looking forward to it. Hopefully I can actually put on some dancing shoes (okay, probably slippers) and celebrate the joyous occasion.


Monday, September 26, 2011

I could cry

My impulse for tears stems not only from the cramping and my lack of bowel movements, but from the milky, orange fluid that started oozing out of my drainage tube this morning. After five days of zero output, I have almost 200 mL accumulated already today.

It means the port can't come out. No hot tub in my near future. No unencumbered showers or dips in the pool. It means being connected and sore.

The only bright light I can glean (and I'm not even sure if this could be true or whether my hopeful imagination is trying to make the best of this bad news), is perhaps one of those fluid-filled cysts in my abdomen burst and this fluid is flowing from it.

I guess, like the poop, the fluid is better coming out than staying in. But it's just so darn dissapointing.


Ode to poop

Oh no, I still can't go
And the scary fact is
I'm afraid to roam
Too far from home
When feeling so impacted

I hope the rut, in my gut
Will soon start its flow
Then I'll be
Less crampy and free
When my bowels do let go

Unfortunately, I clearly see
My future will hold
Some indelicacy


Sunday, September 25, 2011

Too much of a good thing

Four cheese and veggie stuffed pasta shells
Spicy Moroccan chick pea and sweet potato stew
Sundried tomato, fresh basil and bocconcini pizza with olive oil infused crust
Oatmeal muffins with chocolate chips and sliced almonds
Middle Eastern flatbread brushed with butter and sprinkled with cinnamon and sugar, baked and served with coffee

Oh, I've been having fun creating delectable dishes in the kitchen. It's given me great pleasure this weekend. I've been able to work around the blisters and focus my attention to enjoyable, creative and delectable pursuits. Michael's happy because he loves to eat. I love to eat too. But now it's causing me some severe problems.

I guess two doses of the Domperindone a day aren't sufficient because the food I've been lovingly preparing and enjoying is now stuck in my gut, causing great discomfort. I haven't been able to eliminate since Friday and that's becoming a huge problem. I popped an extra action-inducing pill this afternoon because I suspected a blockage, but despite lots of optimistic cramping, no luck so far.

When this happens (and it happened before), the food finds its way out. Last time it was up, via vomiting. This time, I'm hoping I was quick enough with the Domperindone and I'll get a nice bowel movement soon. (Yes, I'm actually talking BMs on my blog tonight.)

Of course, the Domperindone may start to work too well and then, I'll have to bring a magazine to help pass the time.

But did I stop eating when I suspected I was starting to back up? No. That would have been smart. But when it comes to food lately, my willpower hasn't stood a chance. So here I sit, uncomfortable and full.

This balance thing is hard.

On the bright side, I'm still not getting a drop of ascities from my pigtail. The fluid has all dried up. Go Regorafinib! When I visit the doc on Tuesday, we'll be able to talk about getting it removed. Hopefully, that will happen very soon (and be relatively pain-free).

The blisters are more manageable too. While they, and the rashes, are still there, they're much smaller and less painful. The cream Dr. H recommended (or in combination with the other ones I've been using) helped. Walking is easier and my hand function is better.

Tomorrow, I take my last dose of Regorafinib before a week off. When I see Dr. H on Tuesday, I'm sure he'll examine the blood work carefully to ensure the med isn't causing any problems. I do know my blood pressure is higher than normal, but I'm not sure if it's in the "concerning" range. I know what the Regorafiib is doing to me on the outside, Tuesday will paint a better picture about what's happening inside my body.

Until then, I'm wishing for a few successful trips to the bathroom. Oh, the little things that make one happy.


Friday, September 23, 2011

Silver lining

My little black storm cloud of painful and annoying side effects has a silver lining. I think the Regorafinib is attacking my cancer cells.

I haven't drained any ascities in two days. Zero. And nothing is snaking down the drainage tube so far this morning. In the two days before, only 50 mL of the nasy fluid flowed out. So perhaps the cancer cells are so busy shrivelling and dying from the attack of the Regorafinib, they don't have time to produce their liquidy bi-product. Ha! Ha!

Even though I don't like taking a lot of drugs, I think the combination I'm on - Domperindone (to keep things moving in my gut), Dexamethasone (to prevent vomiting) and Rininidine (an antacid) - is working to make me feel better. I think my body is also getting used to them because I seem to be producing less of the nasty, noxious gas.

And no rash this morning either so maybe the Dexamethasone is continuing to keep that at bay.

But the medications, and I suspect it's the steroid, make me want to eat all the time. I also feel shaky at times and need to eat to feel better. So I feel like I'm constantly putting something in my mouth, which isn't good for my poor waistline.

In addition, my taste changes prompt cravings for flavour. It's not that I have a bad taste in my mouth, it's more that I want something better to dance across my tastebuds. Icy cold water, which ranks up there as one of my favourite drinks, doesn't appeal to me any more. So I'm jazzing it up with flavouring and opting for more tasty drinks. Some of  my favourite foods and drinks don't even hit the craving list very often any more - Diet Coke, alcoholic beverages, some fruits and vegetables, etc. Oh, but those lovely, dense carbohydrates (especially baked goods) pop to the forefront of my mind on a regular basis.

With me craving food, I'm enjoying cooking again. I plan meals, chop, saute and simmer. It's a little more difficult with my damaged hands, but I'm managing. Luckily, cooking brings me joy so it's a little ray of sunshine in my slightly depressed life. (Oh, and I'm trying to find more of those, but have to admit, I'm having a bit of difficulty. I'm working on it.)

A few weeks ago, when I was full of fluid with my stomach squished and the food sitting like a lump in my belly, I wasn't eating hardly anything. I lost weight. Now the pendulum has swung the other way and I'm devouring everything tasty, fattening, flavourful or decadant I can get my hands on. Of course, now the pounds are finding their way back on my not-so-petite frame. Neither scenario is good. I will have to find some balance . . . eventually.

Now if I could get the painful, annoying, debilitating blisters to depart my hands and feet, my little black cloud could could start to break up and make room for some blue skies.

What's in your blue sky on this Friday morning?



Thursday, September 22, 2011

Hold on to your horses

From my experiences over the last few days, I'm learning this clinical trial may provide a bit of a bumpy ride. I've got side effects I'm trying to learn to figure out and manage. Unfortunately, I have no idea if they'll get worse or better, and there's always the chance more are lurking just around the corner.

The biggest side effect from the Regorafinib seems to be my poor hands and feet. I've now developed painful blisters on the top inside joints of six fingers and my two big toes. I also have a terrible rash spreading from those areas and down the sides of my feet. The surrounding area is red and inflammed, making it difficult to walk normally and compromising my ability to do some actions. I'm learning to ask for help and adapt.

Luckily, when I was in the cancer centre yesterday giving my last blood draw for the interaction portion of the study, I ran into my nurse and mentioned my poor apendages. She brought me up to clinic and Dr. H recommended a cream that should help. The operative word  is should. It isn't working quickly, but it does provide some relief.

She also mentioned the other three participants came down with a red, itchy body rash on day 15 of the study. Even the man who was in the centre with me on Monday and is on the same schedule as I, woke with it yesterday morning. With the warning on board, I quickly assessed the rash situation this morning (day 17) to find none.

My nurse actually wondered if the Dexamethasone (a steroid) I've been taking for my stomach woes may stave off the rash. One of the prescribed treatments, once the affliction appears, is the steroid Prednisone. So perhaps the drug I've been complaining about will save me from a nasty, little side effect. I'm not out of the woods yet, but I'm keeping my (sore) fingers crossed.

To top it off, I think I had a reaction to the diabetic drug on Tuesday. I guess with the Regorafinib in my system, my body processed the Avandia differently.

On Tuesday morning, I ate my required low-fat breakfast before taking my clinical trial drug. Then we hopped in the car for the trek to Hamilton. During the drive, I noticed my hunger increasing, but told myself we'd get some food when I was done giving blood. By the time I got a sandwich (I needed substantial food at this point) at 10:30 a.m., I felt as though my stomach was eating myself. I was shaky, jittery, scattered and irritable. I felt I was acting crazy, knew it, yet was trying to keep it together.

By the time I started eating, I felt I was capable of eating my hand, I couldn't shove the sandwich in quickly enough. Half a roast beef, cheese and onion sandwich, and a chocolate croissant later and I felt better.

A couple of hours later, the shakes, weakness and a headache started again. Cheese, crackers and juice joined me beside my computer as I worked to boost my blood sugar again. Dinner brought a slightly less instense version of the jitters.

Of course, as soon as the symptoms started, I consulted my sister, the registered dietician, via my BlackBerry and she said it sounded like a diabetic-type reaction and told me, "Keep eating all day." Yes, ma'am.

During my brief meeting with my nurse yesterday, I explained these side effects and even gave her an itemized list for my file. I'm nothing if not thorough.

The other new casualty of the Regorafinib is my voice, which comes and goes. Apparently, the others have it too so it's not unique; just annoying.

My attitude today is "I will do what I can." I'm at work (and wearing soft slippers whenever I'm at my desk to protect my feel) and luckily typing doesn't hurt my fingers. I'll be slower writing, working with paper, walking or doing almost anything else with my hands, but that's okay.

And while my current situation is annoying and painful, it could be worse. My goal today is to try to be positive. There are lots of good things in my life too on which I need to focus.


Tuesday, September 20, 2011

Anyone thirsty?

When life hands you lemons, make lemonade. Well, I'm going to have buckets to quench the thirst of my entire village several times over given the juicy, yellow fruit that seems to be falling in my life these days.

First things first, everything went okay yesterday. Although my veins went into hiding and it took three, bloody sticks to get the vein threaded and the port-like device into my arm so the nurses could draw blood all day without poking me every time. I was very thankful when the third time finally worked because it hurt like a son of a gun.

During my appointment, Dr. H and I talked about my list of side effects, including a brutal toothache I had for 24 hours (which dissipated mid-morning yesterday). Apparently the most common side effects reported to date have been tiredness (yup!) and flu-like muscle aches (nope).

But, another man, who is on the same schedule as I and was in the clinic yesterday also complained about mouth sores, tooth issues and foot (as opposed to hand) rashes and soreness. So we are seeing some of the same things, and it's different side effects for different folks.

Dr. H seemed to find my complaints about a flattened personality and apathy interesting, and said he'd have to watch how that progresses.

My blood work showed my liver is functioning fine, but my white blood cells, platlets and sodium levels all dropped. My potassium is raised. Go figure. My levels were going to be re-checked during my blood draw today. I'm sure if there's a problem, I'll hear about it.

I asked about whether I should expect the side effects to just continue to get worse over the course of the three-week cycle, get better when I go off the drug for the "vacation" week and then come back during the round. Dr. H said my body may just adjust to some of them, but others may be something we'll need to manage. Only time will tell.

I'm disappointed to say I'm still draining too much ascities to get the pigtail out. Given 250 mL flowed out of the tube on Sunday tells him it's still needed. When my drainage amount gets to 50 mL or less a day, we'll consider its removal. I'm a bit bummed because it continues to mean no hot tub, but sadly I'm getting used to the stupid thing. It's amazing how the body can adapt.

I did get the numb bum and sore muscles from sitting around all day yesterday, but Michael and I managed to watch some episodes of a TV series we enjoy. We went in knowing it was going to be a long day and prepared for it.

But what we weren't prepared for was the chaos and stress awaiting us when we got home. Suffice to say, Noah had some trouble at school and then lied to us about it. It was a very anxiety-causing, argumentative night that sent both Michael and me in a tailspin. We're working through it with both the school and Noah now - and it'll take some time - but it was the last thing we needed after the long, drawn-out day. It exacerbated our worries, concerns and emotions. I couldn't fall asleep last night I was so agitated and have been worrying ever since. And the last thing we need is more worry.

So this situation is another issue we need to deal with right now. Lots of lemons. Hey, let's break out the vodka to mix with that lemonade. It might make things just a bit smoother.


Monday, September 19, 2011

Packing for the day

Michael and I are Hamilton bound today for the second round of testing for the Regorafinib clinical trial: The whole reason behind the study and why I get to take the cancer-fighting medication.

I now have 14 days of Regorafinib in my system, so researchers can study if my body processes the diabetic drug any differently. If you recall, I spent the day at the cancer centre three weeks ago, took the Avandia by itself to determine how quickly it metabolized through my body through a series of blood tests.

Today, they'll run the same series of blood tests (0.5 hours before and one, two, four, six, eight, 12 and 24 hours afterwards) to evaluate if the Regorafinib affects the metabolism of the Avandia. In all honesty, my doc isn't really concerned about what these results say, he just wants me on the Regorafinib with it's cancer-attacking properties. He'll care about how I'm tolerating the medication, which of course is my top priority took, since I'm having issues.

So I'm off to the cancer centre today to fulfil the interaction requirements of the Regorafinib study. Then I'll go tomorrow and Wednesday for the quick 24- and 48-hour blood tests to finish it up. After that, I stay on the medication as long as I can tolerate it well and for as long as it works to attack the cancer cells. I hope we can get some of the side effects under control and I'll be able to take it for a good, long time.

I've packed up food, books, movies and cards to help pass the time. If I go with the mindset it's going to be a long day and settle in, it sometimes isn't so bad. I'll also have my Blackberry and my email. I'll check my blog. So feel free to say hi.

Your friend who will have a numb bum by the end of the day.


Sunday, September 18, 2011


Today is a rough one. I slept terribly, woke with a massive headache and backache, and generally feel like crap. Tears threaten just below the surface. I feel I've been unwell for so long, I will never feel good again.

Of course, my mind is completely overexaggerating the situation, but pain does weird things to person.

In fact, yesterday morning, I felt pretty good. I went grocery shopping, bought all kinds of great food, worked in the kitchen marinating Thai lime chicken for dinner, and creating a delicious spread of cheeses and nibblies for some friends who visited yesterday afternoon. I love to cook, and I felt productive and happy. I mentally planned all kinds of awesome meal ideas for the coming week with the ingredients I purchased, and yet today I have no desire to even look in the fridge. I feel like a freak.

I think it's because last night after dinner, my body started acting up again, bloating and feeling sore. Of course, I took myself off some of my medications because I didn't like some of the side effects, which may be the culprit of my discomfort. I don't think my uneducated attempts to regulate my medication is working too well, and I am going to re-introduce some today in an attempt to feel better. Again, I feel like a giant science experiement that's gone off the rails.

Tomorrow I go see my doc, and I'll pull out the laundry list of side effects I've experienced. While they may not all be related to the Regorafinib, I can't rule anything out. These include:
  • Upset stomach
  • Gas/bloating (very stinky farts and burps)
  • Diarrhea
  • Sore, swollen, tender, dry, red hands (and to a lesser degree feet) - It feels as though the surface of my fingertips are covered in tiny cuts
  • Headaches
  • Tiredness
  • A sore on the tip of my tongue
  • Decrease/change in taste
  • Scummy teeth
  • Flattening of my personality/slower
  • Irritable/less patient
  • Less interested in things
I think my blood pressure has increased too, which is a potential side effect of the drug - and one the doc will be watching carefully.

I'm trying to be patient, reminding myself I had terrible acid side effects when I started the Olaparib, which we were able to get under control, but it's hard. I feel so worn down by it all. Worst of all, I feel like I'm in a holding pattern, and I don't have anything to look forward to or anticipate. I haven't felt content or joy or unabashed happiness in quite a while. I don't wake up excited about the day or activities in it. There are so many things I can't do and I don't get revved up by the ones I can.

I feel like I'm living on the periphery of my life, and I hate it.

So there you have me, in all my ugly glory today. I warned you it's a rough one. Maybe tomorrow will be better. One day at at time.


Friday, September 16, 2011

Emotions floating on the surface

When one lives with a crazy range of emotions so near the surface, it's not surprising a small incident or errant word can affect mood in the blink of an eye. Michael and I seem to be living in that particular world right now and it's a tough place to be. I'm sure it's extremely difficult for those close to us too.

I can go from being fine to irritable to bursting into tears with little notice. I was chipper this morning, chatting with a friend. Then I got my tube connected to my port caught, tugging against my abdomen and I almost burst into tears. Of course, it doesn't help the area is sore because the dressing/tape/lack of air around the area is affecting the integrity of the skin and a piece tore off during dressing changing this morning. Ouch!

Last night, I rapidly turned irritable because of tiredness and a fairly innocuous action of Noah's. I was calm and fine, and then I was an angry grump.

And Michael is feeling the effects of stress, worry, chaos, uncertainty and watching me live in discomfort - which unfortunately changes from day to day. My honey is a sensitive soul - one of the things I love about him - so this whole situation is extremely hard on him.

The entire range of possible emotions float just below the turbulent surface of our minds. What rises to the top depends on which way the wind blows or what falls into the pool of our consciousness. Unfortunately, more often than not, it's negative feelings and reactions that tend to appear. If, and when, we have more answers or certainty, the waters should be calmer and allow for more rational reactions. And hopefully, it will allow more positive, hopeful and joyous feelings to buoy up too.

Until then, we're doing the best we can. And as a friend wisely pointed out to me yesterday, that's perfect. We can only do our best.


Wednesday, September 14, 2011

A low day

Moan, bitch, grumble, sigh.

When my feet hit the floor after crawling out of bed this morning, I felt the heaviness in my body and spirit. I'm trying to open my mind to the wonders of the universe and all the blessings I have in it, but I have a feeling this day may be a little rougher than some.

I hate to complain. I hate to unload my burdens on others, because I'm afraid doing so will push them away - just when I need them most. I also don't want to generate worry, fear, guilt, helplessness, anxiety, indifference or scorn (suck it up, buttercup) in those close to me.

This fear is something I've been talking to my therapist about: Sometimes I'm afraid to be just me in all my ugly glory because of the reaction it may illicit in others. I'm also unconfortable with conflict. But when I hold back with others I care about, I'm jeopardizing true back-and-forth, honest communication. So it's something on which I have to work.

I hurt this morning. While there's no big owie making me cringe and cry, lots of little ones are ganging up to poke the tear ducts. My stinky, churning gas is still rolling around in my abdomen and sneaking out to attack the world with its olafactory badness.

My stomach really hurts at times. I now almost continuously put food in it to try to quell its discomfort. Being full of carbohydrates (to suck up something that's irritating it?) seems to help, but I can't just keep eating. And it doesn't always work. The semi-relentless nature of the discomfort is really wearing me down.

One of the listed side effects of the Regorafinib is hand and foot rash, producing red, peeling, sore appendages. I've got it, especially on my fingertips. They feel swollen, tight and tingly, but they're also painful as though I decided to run them across a fine cheese grater for a little while. Heat and too much pressure exacerbates the discomfort. Applying cream temporarily helps. Apparently, the doc can prescribe a cream to help, and I'll be sure to ask for one when I see him on Monday.

Another stupid pain I've got today results from a slight accident yesterday afternoon. I got my drainage tube caught and it pulled my pigtail, producing a sharp, fleeting pain. Tenderness and pain appeared in that area and internally since. Sheesh.

And then I'm tired. I know it's a side effect and to be expected. But it's a weary tired.

After my homecare nurse visit last night, I came to the not-so-swift-on-the-uptake conclusion I'm taking oral chemotherapy - and an experimental one at that. I'm just discovering and learning how to deal with the side effects this form of treatment takes.

So while I'm sitting here typing, "wah, wah, wah," I'm hoping the day will get better, my mood my lift and I'll discover some hidden gem that makes life worth living.

Here's hoping you discover some wonderous tidbit in your life today too.


Tuesday, September 13, 2011

A body of science

My body is a giant science experience every, single day and I'm the highly inexperienced lab technician trying to find the right balance, and monitor and track the relevant outcomes.

I have a boatload of meds on board, each designed for their own specific purpose. Then I've got the big, ol' experimental cancer one, which can cause all kinds of unknowns - and potentially work at cross purposes to the other drugs.

The Rininidine, an antacid is probably the most common of them all, and I have no problems popping that baby in my gullet morning and night to stave the flow of acid up my throat. I also have no issues with the mind-quelling Lorazepam, designed to help me sleep.

The Dexamethazone, a steroid to prevent vomiting, is also doing its valuable job. It's side-effects have also helped me recapture an appreciation for food: It has taste again, I get hungry and I want to eat. That's good, although I know in the past this steroid affected my personality in a negative way (read: bitchy), but so far, so good. Perhaps the dose is too low or perhaps this reprecussion is squashed by the other drugs.

I'm having trouble with the Domperindone, the tiny pill designed to move the food through my system. My yellow prescription bottle instructs me to take it half an hour before each meal and at bedtime, which I was doing religiously until Friday night. Then it worked too well. I had eight bouts of diahrrea between midnight and 10 a.m. on Saturday morning. Being chained to the toilet is not a happy place to be.

So I stopped the Domperindone cold turkey. But then I ceased having bowel movements. So I started a little experiment taking one a day. This morning, I had a few negative side effects with repeated trips to the bathroom, but I hope this cause-and-effect is short lived.

Of course, the Regorafinib can also cause diahrrea. So, which med is it? How do I balance it? It's all trial and error with my body, its functions, my stinkiness and my embarassment caught in the crossfire.

As for the Regorafinib, I think I'm starting to experience some side effects from the drug. My stomach hurts when it's empty; a stabbing, aching, weird sensation that begs for food. So I'm trying to keep smaller staches of snacks on my person at all times, for the longer I go with the empty aching feeling, the worse I feel.

I'm also getting some sensitivity and dryness in my hands and feet. My fingertips are red, sensitive, tingly and burning. Hot water running over them hurts. I knew this was a possibility and will talk to my doc about it on Monday, as apparently he can prescribe a cream to help.

I also think the Regorafinib flattens my personality a bit. I seem to be thinking, moving and reacting slower (unless of course, I blow a gasket and have a temper tantrum - hello steroid? frustration? anger?). I feel less enthusiastic and engaged sometimes. In a way, it helps me more calmly approach situations and brush off situations that really shouldn't matter, but it's a weird sensation. I guess I'll see what happens longer term.

Draining is slow. I'm only getting 50 to 75 mL a day. I'm a little bloated, but not crazily so. So perhaps that's good news and the drug is working. I've got my fingers crossed.

Emotionally, the whole bodily experiment has me a bit down, but I'm doing my best to cope and approach each day as a new one. I have to stick to my mantras: One day at a time and die cancer die!


Monday, September 12, 2011

Leaky emotions

Sometimes I think I'm carrying on quite well, participating in activities, interacting with family and friends, doing the best I can despite my limitations, drug reactions and discomforts, but every once in a while I blow a gasket, shattering the illusion I'm coping okay.

I threw a brief, three-year-old-style temper tantrum this morning while leaving the house, complete with a scream, foot stomping and sour face. Then I sat in the car with my arms crossed, stewing in my own ugliness all the way to work. Poor Michael.

Don't get me wrong, I think I'm doing a pretty darn good job of managing the stress, uncertainty and chaos in my life. I'm managing to work a full-time job, be a part-time guinea pig (oops, clinical trials patient), a full-time mom, a wife, friend, sister, daughter, etc. I may not be doing them all up to the standards I previously held for myself, which is hard for me, but I'm doing the best I can. And part of me has to lower the unrealistic illusion I need to attain those pre-conceived standards of my - and mine alone - acceptability. Sometimes the best I can do IS good enough.

Last night, the maurauding, midnight gremlins snuck into my head for about an hour to torment my brain with random thoughts. Luckily, shortly after I awoke, I realized I'd forgotten my lorazepam and wandered to the kitchen to remedy the oversight. Once it kicked in, I slid into dreamland, but in the meantime, I got to explore some of those dark-of-night thoughts.

I realized I'm sad about the end of summer. For a season that was supposed to be so fabulous, cancer-free and fun, it certainly didn't turn out that way. I've spent most of the summer bloated, in pain or feeling unwell. My favourite activities were curtailed and worst of all, I felt like I spent the entire season waiting instead of doing.

I've anticipated getting into the clinical trial, starting treatment, getting the port in/out, starting the drug, establishing the side effects, feeling better. I feel stuck in a holding pattern. I want to move forward, but I don't know how or what I can do. Even though I'm not a big fan of fall, and I hate winter, a small part of me welcomes it because perhaps then I'll be better.

But then a small voice in the back of my head says, "Maybe not." And of course, that scares me. So what do I do? I can't spend my life waiting because that's not living. But my brain and feet are stuck in a inert glue. It makes me sad.

I know I'll figure something out since the thoughts are in my consciousness, but it may take me some time. For now, I'm rambling during my post-tantrum blues.

Thanks, as always, for listening.


Friday, September 9, 2011

Blessed sleep

I broke down and took my little, white lorazepam before trundling off to bed last night. I thought with the depth of my tiredness and the magic mind-melder, I'd drift into dreamland within seconds. But apparently, my mind is treasure trove of swirling thoughts and emotions, so it took longer than I anticipated. However, the hazy combination did open my mind to different thoughts and ideas, which is never a bad thing.

I had an amazingly tough and thought-provoking appointment with the my social worker yesterday. Our discussions produced revelations about myself. Some I knew, and some blew me away. I'm still processing the information I learned (and I'm sure forgetting at least half of it) and then I'm going to look at ways to incorporate new actions into my life to get more of the reactions I desire/need. I know it all sounds convoluded and I'm not even sure how to accomplish what I want, but awareness and desire to change is the first step. But some of it is also scary and makes me vulnerable, so we'll see where that goes.

I may share more later, but that pathway opened by my therapist also led to a little talk with God before bed last night, which produced it's own back-and-forth, chaotic results. I'm still struggling a little bit with that relationship because I'm frustrated and angry, which then makes me feel guilty. I almost don't feel worthy of His attention or sense He's listening to me. I believe the prayers of others hold more weight with the Big Guy, which is why I appreciate it when anyone else offers to say put in a good word on my behalf.

But, I have faith, I know He's there, I just have to reach out and invite Him into my life more. Like many of my relationships, I have to open myself up to being who I am - the good, bad, ugly, wonderous, silly, petty, overwhelming, loving, contradictory individual I am.

Whoa, what a giant philosophical topic for a Friday morning. I didn't expect my fingertips to spew out this message, but it must be floating on the surface of my mind. And, good or bad my dear readers, you're the recipients.

On a more practical note, I asked for BMs, and I got them yesterday. But I also asked for a big draining and it is still concerningly slow. My homecare nurse said if it doesn't improve and I swell up like a balloon again, I'd probably need to go to the hospital to ultrasound it, see what's up and potentially move it. Ack! Like I want to go through that again, especially when I'm on the drug that may quickly dry up the fluid.

So I'm hoping the little bits of draining I'm currently getting will be enough to keep  me comfortable until the Regorafinib can work its wonderous, fluid-sucking magic. (Although I will continue to watch the tube, willing the ascities to flow, flow, flow.)

Oh the strange things I have to worry about on this journey called cancer.

Thanks for indulging my weird and wild (and cryptic) ramblings this morning. I appreciate your sympathetic ears and accepting understanding.

Happy Friday,

Thursday, September 8, 2011

Bad combination

Today would be the perfect day to crawl back into bed and pull the covers up over my head. It's a dark, rainy Thursday morning and I didn't get much sleep. I woke at 3 a.m. (after sleeping fitfully for a few hours) and then laid in bed fretting until about 4:45 a.m. When the alarm shrilly blared at 6 a.m., my mind and body groaned.

I'm not sleeping well because I haven't drained well over the past three days - and that worries me a great deal. After having two 700+ mL days, I've only drained between 50 and 100 mL over the past three. I  know the drug is going to dry up the fluid (look at me being positive, despite being tired), but it doesn't start happening before I start taking the pills. I'm starting to notice the bloating again and the whole situation has my mind racing. I have no idea what's going on, but my homecare nurse comes tonight so I'll plumb the depths of her experience.

In addition, the drug I'm taking to get my system moving better so the food can move out is only partially working. Bowel movements aren't as frequent as they should be and I have a lot of gas. I can feel it rolling around in my body as I try to sleep and when it comes out, man is it stinky. I feel sorry for my family and I'm anxious at work a colleague will enter my airspace at an inopportune time. But I can't help it. And as Shrek always said, "Better out than in." True, but embarassing.

So it's stinky, tired, bloated Tina who is getting ready for work today. With this combination (I'm also on a low dose of steroids to prevent vomiting, which make me bitchy), I feel sorry for us all. My apologies in advance everyone.


Wednesday, September 7, 2011


Things went well in Hamilton yesterday. I got the Regorafinib and took my first dose. Hopefully, I'm now on the path to kicking this cancer's ass - again.

I take four capsules every morning, 30 minutes after a low-fat breakfast, for 21 days. Then I take seven days of before starting the cycle again.

Yesterday, Dr. H informed me two women, who were on day 14 of the drug, reported flu-like symptoms appearing around day 10. I may or may not experience those. I have no idea how long they last nor how severe they are. However, it's good to be forewarned. I'll have to keep track of all the weird symptoms I experience while I'm on this experimental drug.

Another potential - and strange side effect - of the medication is a very slow heart rate. I had an ECG about 45 minutes after popping my first four pills and the technician was surprised to see my 41 beats per minute heart rate. Holy crap! The entire 10 minutes I was connected to the machine, it hovered between 41 and 50 bpm. I left the ECG reports, along with a note, for my nurse and if there's an issue, I'm sure she'll call.

In the meantime, I continue my normal life today. I'm back at work and all that brings, and of course, the routine of school and kid activities will pick up too. While I do all those typical, daily activities, I'll pray the Regorafinib attacks the masses. Die cancer die!


Tuesday, September 6, 2011

Several starts

It's a day of firsts in the Bratscher household this morning. Today:

  • Noah starts grade 9. I'm very excited for him. I hope it will be an exciting, accepting and diverse place where he can find his niche and grow as an individual. I know we'll still have bumps along the road, and I'm a bit nervous about the transition with new teachers and supports who don't know him well, but I'm praying for the best in all ways.
  • Tara starts grade 5. It's her first year at the school without her brother, she's now part of the senior group at the school and she's excited about the new challenges. (Okay, maybe it's about seeing her friends more often.) But she's a great student and I'm sure the academics and social aspects of school will lead to her growth and development. 
  • I start the Regorafinib today. Michael and I head to Hamilton after we drop Tara off at school. I know it's going to be crazy at the cancer clinic - it always is after a long weekend - so we'll go anticipating a wait. But after my blood draw, I'll see the doc and get the drug I hope will start battling these tumours in my abdomen. I pray it works quickly and I start to feel better. It's a step in the right direction.
So it's an exciting and busy day in the Bratscher household.


Monday, September 5, 2011


The drugs must be kicking in because I feel much better today. In fact, I haven't felt this good in well over a week. While I still have gas - which is thankfully still coming out instead of staying in - and some aches and pains, I'm no longer throwing up. Ah, the small blessings.

It's funny, up until two or three weeks ago, I didn't even think of myself as being sick. Sure, I was blowing up like a balloon with fluid, which required a pigtail and draining, but that was more of an inconvenience. A small blip on the screen with wellness.

And yes, sometimes eating would make me double up with pain, but I thought it was my battle with the gas in my abdomen, not big fluid-filled tumours occupying my belly.

I'd sit in a room sometimes and commiserate about a friend with a cold, shingles or an injured ankle, but I didn't think about me and having cancer. I just didn't think of myself as sick. Although, truth be told, I was far sicker than anyone else in that room (and most rooms for that matter).

Perspective is a funny thing.

I guess knowing the results of the CT scan, the presence of all those cysts and the seriousness of the situation, knocked reality back into my noggin. I am sick. I'm actually really sick. Not that I'm prepared to succumb to anything, but that dash of cold water put my pain, bloating and vomiting into perspective. It made my mind meander down dark roads to death, but also made me realize it's time to pull up my socks and get moving. If I weren't getting the Regorafinib tomorrow, I'd certainly be pushing for chemo or some other treatment to get this nasty, aggressive scurge under control.

Unfortunately, since I started throwing up and feeling bad every day, I  have felt sick. That is probably one of the hardest things for me. I don't want to be dependent. I don't want people feeling sorry for me and using that syrupy tone (luckily not many do that) of sympathy.

Don't get me wrong, I appreciate all the help offered and the generous kindness, but I don't want people to feel sorry for me. Feel bad, angry, sad or frustrated with me, but please don't pity me. Even though it's meant with the best possible intentions, I hate seeing those looks in the eyes of those who love me.

But on the bright side, I feel better today and I get Regorafinib tomorrow. I will be on the path to feeling better and starting to kick this cancer in the ass again!


Sunday, September 4, 2011

It's 2 a.m.

I can't shut off my brain. I've been trying to sleep for the past 2-1/2 hours with no luck. Now I'm listening to the thunderstorm outside and waiting for the lorazepam to take effect.

I broke down and took the little, white pill for the first time in about 10 months. I didn't want to go back on the medication, but the combination of the dexamethazone (a steroid) my doc prescribed to help with my vomiting and the thoughts swirling around in my head prompted me to search out the prescription bottle about 20 minutes ago.

I'm worried.

I vomited twice today. Once this morning and once about 1 a.m. While the meds are starting to get gas moving in my body, which feels so much better, the food is obviously not moving fast enough and my body expels it. To be honest, I feel so much better when I throw up. An empty stomach is far more comfortable. But it's certainly not healthier.

I secretly am pleased I'm losing weight, but I also feel guilty that I'm happy. I know it's wrong. It certainly isn't a smart weight-loss solution and I'm losing muscle as well as fat. I'm still bloated and jiggly, just lighter. And worst of all, I can't control this weight loss program. I have no control to stop it when I want. I don't want to waste away and feel lethargic from lack of nutrients. We have to turn this bus around soon.

I also started expelling blood from my port as I drained today, in quantities I haven't seen since I got the pigtail inserted. Perhaps my vomiting aggravated something, and it's bleeding. Maybe the meds designed to move things along caused injury to the fluid-filled cyst at the base of my stomach. I don't want to think about more serious issues for the blood generation. Of course, I'll mention it at my appointment on Tuesday.

I'm tired of experiencing pain much of the time. I don't know how those with lifetime chronic pain do it. Sure, mine is manageable with Tylenol and a lot of moaning, but it's also depressing. It limits my actions and affects my mood.

I'm so scared I've started down the slippery slope to not feeling better ever again. The road to dying. I'm more scared for Michael and the kids than I am for me. I can't imagine learning to live without my soul mate and carrying on with raising the children, going to work, planning vacations, going out and participating in life. I can't imagine losing my mom at such a young age. I worry about my kids remembering me, how they'll develop, how my dying would affect them.

Sure, I'm afraid of the pain and uncertainty of dying. I'm not ready for it yet. I don't want to miss out on all life still has to offer, the experiences I will have. I want to grow old with Michael, participate in the lives of my children and shower love on my future grandchildren. I don't want to leave my family and friends. But most of all, I don't want to cause the hurt and grief my leaving this world would create.

Tuesday can't come soon enough. In two days, I'll start on the potentially life-prolonging medication that will also help me feel better. Sure, there may be side effects, but bring 'em on. It's gotta be better than this, and all the worry its causing.

Well, I think the lorazepam is starting to kick in, so I'm going to try to lay my head back on my pillow and drift into dreamland. I need the rejeuvenation - and blissful ignorance - sleep can bring.


Friday, September 2, 2011

For the love of food

I love food. I enjoy noshing on my regular favourites and exploring new flavours. I love to cook, experimenting with recipes and new dishes. I even love grocery stores and don't mind shopping for food. This love affair makes it difficult for me to lose weight. It's hard to eat fewer calories when everything tastes so darn good.

So I find it weird to be in my current situation. The fluid-filled masses in my abdomen squish my stomach and prevent food from moving through my system. As a result, eating makes me incredibly uncomfortable. My doc gave me medication to combat the acid the masses create and encourage my body to process what I eat, but these pills aren't completely effective.

I've gotten much worse over the past two weeks and I find I'm now eating about a third of what I used to eat each day. To make things worse, I'm not getting much enjoyment from these snacks and meals. It's as if half my tastebuds have been turned off because my body knows eating will produce pain and is discouraging me from putting morsels in my mouth.

I'm never hungry any more. My stomach doesn't growl. I don't crave anything. Even my beloved chocolate holds little appeal for me. I miss loving food, despite its pound-packing properties.

I know I must be losing weight because I'm eating so much less, but it's hard to tell because of my bloated belly. But this type of weight loss, even if it's somewhat easier, isn't what I want. I worry about not getting enough of the right foods, like fruits and vegetables. I'm also supposed to eat lots of protein right now to replace what I'm losing in the ascities I'm draining. That's a lot of pressure on someone who doesn't even feel like eating (so let me eat what I want). Sigh.

And it's not just food causing the pain and bloating. Liquids do the same thing, albeit to a lesser degree. So I'm drinking less too. I used to drink several large bottles of water each day, in addition to other beverages like coffee, diet coke, milk, etc. But now, guzzling anything is a gut-wrenching experience - literally. As a result, I feel slightly dehydrated.

As challenging as loving food (and drink) could be to my waistline, I'd prefer that to my current situation any day. I'd love to eagerly anticipate eating a tasty treat. I miss creating a wonderful meal and then sitting down to enjoy it with a glass of wine. I miss chugging some ice-cold Diet Coke and smacking my lips in delicious delight afterwards.

Hopefully the Regorafinib will quickly attack the masses pressing on the top and bottom of my stomach, giving it the room it needs for me to start enjoying food and drink again (and as a result, make me feel much better overall). And it even though it may lead to the reappeance (okay, more like maintenance) of chunky Tina, I think I'd be a lot easier on her in the future as she twirls the linguini around her fork.


Thursday, September 1, 2011

Shock and worry

Michael and I headed to Hamilton on Tuesday, loaded with food and distractions to amuse us for the 10-hour day. The clinical trial portion of the day went fine. I took the Avandia and submitted my arm for the required seven blood draws (and even went back yesterday morning for the 24-hour one). I didn't feel any side effects, except for perhaps a stiff body, some tenderness in the crook of my arm and a numb bum. But those weren't from the drug.

The unexpected - and shocking - information came when I learned the results of my CT scan last Tuesday. Michael and I are still trying to process the news. My abdominal cavity now has six measurable masses (not just the one we were hoping to grow to 1 cm when we though we needed a "measurable lesion" to participate in this clinical trial). Dr. H says most of them are cystic masses, which means fluid-filled. But from what I understand, there are solid pieces in there too (by the fluid, surrounding the fluid, etc.). These cystic lesions are big. Holy crap, they're big!

They measure: 1.5 cm, 5.1 cm, 7 cm, 3 cm, 2.3 cm and 7.1 cm. This last, giant one is like a balloon-filled sac that's sitting in my upper left abdominal cavity. Because of its lining, the fluid in it can't drain, even though my pigtail is just below it. It's the lining on this 7 cm balloon that's worrisome, because it's the cancer, so it needs to go.

One of these lesions is on the surface of my liver. But when I asked if it was in the liver, the doc said no. He confirmed all the cancer is still contained in my abdominal cavity and hadn't spread anywhere - which as he put it, would be a whole different story. So that's good news.

When I learned about all these growths, I got teary. I asked Dr. H if he believed the clinical trial was still the best course of action considering the aggressive cancer activity in my abdomen. I wondered if waiting the two months to get into the trial was detrimental. I asked if I should be starting chemo right away. He believes this trial is still my best option, with chemo as a back-up plan. He said if the Regorafinib does its job in me, the fluid will dissipate and the tumours may shrink.

Once the fluid is gone, we'll have a better understanding of the solid masses present. The balloon mass may take longer to go away or may even require a needle aspiration to get rid of it, if the Regorafinib doesn't work on its outer layer.

Dr. H seemed calm and certain. I'm sure as an oncologist, he's seen it all, but Michael and I felt better after talking to him; less panicked. He even came to ambulatory care, where I was located most of the day, to show us the photos of my CT scan, point out the concerning areas and answer all my questions. He seems confident in this course of action and suggested I give it a try, and that's what I'm going to do.

In the meantime, he's given me a couple of medications to try to help me. I can't eat very much these days, and often when I eat, its painful, pressing against my abdomen and ribs. When I do manage to eat a regular-sized meal, the food seems to sit in my stomach. As a result, I threw up on Friday and Monday nights.

I've also had acid crawl up into my throat and sit there. It's an upleasant feeling and makes me feel as if I'm going to vomit. So Dr. H prescribed an antacid and a drug to get the food I do eat moving through my system more quickly. That way, it shouldn't try to come up and out instead of down through the usual systems.

Learning about all those cystic tumours in my abdomen explains why I can't eat much (my poor squished stomach), the pain, the bloating, the general unwell feelings. But the explanation has Michael and I feeling shell-shocked and worried. We hold hands a little tighter, we hug a little more often.

But I'm ready for action. I'm angry the cancer attacked me this much while I was not-so-patiently waiting. I feel it launched a sneak attack during the lull. Well forget that. It's time to bring out the guns and start blasting away. And in the carnage of what's left of the cancer, we'll be able to see just how settled in the strongholds have become. Hopefully, they'll all shrink and retreat, leaving only pathetic hulls of the blustery soldiers they're currently attempting to be.

I get the Regorafinib on Tuesday. I pray it works - and quickly - to attack those cancer cells, drain that fluid and get me back on the track to wellness; whatever that means for me now.

Thank you all for your good wishes as I start this clinical trial. Knowing you're out there, rooting me on, gives me strength as I face invasive procedures and learn bad news. Your supportive presence makes me excited to share good news and success stories.

Whatever the situation, you're there. Thank you for sharing this journey, with all its ups and downs.