Monday, August 29, 2011

Guinea pig

In 24 hours, I'll be in Hamilton, starting my new role as a guinea pig.

I haven't really thought about the whole experience beyond the logistics of all the appointments and planning life around them. Oh, and whether my stupid, summer cold will affect my participation. As soon as I went on vacation, I came down with the nasty, head-clogging malady. I suspect it won't make a difference to the clinical trial, but I'm going to call just to make sure.

Today, I'll have to think about heading to Hamilton tomorrow and focus on the activities I need to accomplish before we leave at 6:15 a.m. I'll need to pack a big bag of sandwiches, snacks, drinks for the long day at the cancer centre. Michael and I will need books, movies and crossword puzzles to keep us amused.

We'll also have to determine whether staying in Hamilton tomorrow night is better than coming home and returning Wednesday morning, with the kids in tow. From there we'd continue on to a "vacation" activity in the Hamilton/Toronto area. Of course, my port pain, reduced endurance and this stupid cold will limit the choices. Or Michael and I could stay in Hamilton, do my Wednesday-morning blood draw, return to London and choose a family activity in this area.

All these decisions (and my foggy head) leave me little time to worry about the medication, side effects, blood draws and general cancer-related stuff. Of course, I'm purposefully not focusing on all the details of what will happen tomorrow.

I do know I need to talk to Dr. H about my CT scan. When I asked about it during my phone call with A on Friday, she said there is "lots of stuff on there, cystic stuff. Not solid tumour masses." What the hell does that mean? She said Dr. H thinks it may be pockets of fluid, but he'll talk to me about it on Tuesday.

My CA-125 is an ugly number, just as I expected. A normal CA-125 is less than 35, and mine's a whopping 708 (at the end of July it was 565). But from the 400-600 mL of fluid I drain from my abdomen every day, I know the cancer is having a little party in there. But if it hasn't spread or produced any major masses, perhaps that's good. That's what I'm hoping.

So my newest guinea pig role begins at 8 a.m. tomorrow, when I'll give blood. Then I'll go talk to Dr. H, be examined and ask my questions. After that, I'll head to the chemo suite, where a nurse will put in a IV-type device through which they'll draw the many vials of blood. After taking the Avandia, a diabetic medication, I'll be moved to ambulatory care where I'll give blood at 0.5 hours, 1 hour, 2 hours, 4 hours, 6 hours and 8 hours after swallowing the pill(s). Then I'm free, and only have to return for a single blood draw in the lab on Wednesday and Thursday mornings.

It's going to be a long, tedious day, but then it will be done and I'll move onto the next stage. Wish me luck. (By the way - I really value your prayers and wishes of luck because they got me on the Olaparib last year, and now they slotted me in the Group B. So keep it up! You're a powerful and inspiring group, in many, many ways.)


Friday, August 26, 2011

Group B

I found out this morning, I'm group B (the one drug for diabetes) and I start Tuesday. So I'm on vacation and I'll spend part of the week in the cancer centre, but we're starting to act.

I'm relieved.

Just thought you should know.


Wednesday, August 24, 2011

Waiting for the call

I'm optimistic I'll be accepted into the clinical trial and am therefore posting its details today. If I weren't (mostly) confident this was going to be my future, I'd be wasting my (and your) time. But I expect the phone call tomorrow, so here goes.

As I mentioned in previous blogs, the study's purpose is to study the effects of Regorafinib (or BAY 73-4506). Specifically to answer:

  1. How do Regorafinib and other drugs interact to affect the clearance of the medication from the blood?
  2. How much of the probe substates (the other drugs) remain in the blood after co-administration?
  3. Does Regorafinib cause tumour shrinkage (previous studies have proven yes, but it's a good purpose to have again)?
  4. What are the side effects of Regorafinib (again, studied before but good to examine again)?
The group to which I'm assigned determines the other drugs I'll get.

Group A will receive:
  • Warfarin (Coumadin), a blood thinner
  • Omeprazol (Losec), an antacid (which I've taken before)
  • Midazolam (Versed), a sedative that's used to treat insomnia, seizures and as a sedative
Because Warfarin thins the blood, group A participants will also receive vitamin K, whch counteracts the drug's effects and thickens the blood.

Group B will recieve:
  • Rosiglitazone (Avandia), a diabetic medication
Health Canada has issued a warning about Avandia, stating it may increase the risk of serious heart problems, including heart failure, angina (chest pain), heart attack and fluid retention. But thousands, if not millions of people have taken this drug. With only two doses, my risk of these side effects is extremely low.

You can see now why I would like group B. You can tell when you're blood sugar is dropping and eat something. You can't feel your blood thinning. I know the researchers will watch me extremely carefully, but group A also requires more blood tests during the study, which will make it a bit more difficult to plan my life.

The study

Before the Regorafinib
This will be an eight to 10 hour day at the cancer centre. It will start with a physical exam, ECG, blood tests and a urine sample. Then I'll be given the assigned drugs by themselves to assess my body's reactions. I'll have blood drawn at 0.5 hours, 1 hour, 2 hours, 4 hours, 6 hours and 8 hours. Then I need to come back the next two days for a 24 and 48 hour blood draw. If I'm in group A, I'll skip a day and then go back for two more days for a 96 and 120 hour blood draw.

All this must be done in Hamilton, so it involves three days, plus two more days of appointments for group A. If I'm in that group, they'll also examine my blood to ensure it's clotting properly and if not, give me vitamin K to counteract the Coumadin's effects. I'm assuming that will mean extra time in the cancer centre.

A week after taking the assigned drugs, I'll attend an appointment to get the Regorafinib. This appointment will once again involve a physical exam and ECG. Then I'll get the drug - four tables a day - to take 30 minutes after a low-fat breakfast (yeah, no fasting). Then I'll go home and take the drug for two weeks before returning to the cancer centre.

The mixing of medicine
On day 14 (or three weeks after this entire thing starts), I'll spend another eight to 10 hour day at the cancer centre. I'll start with all the monitoring tests and exams, then I'll take the assigned drugs with the Regorafinib in my system. Again, I'll hang around and they'll take my blood 0.5, 1, 2, 4, 6 and 8 hours after consuming the drugs. This is the key segment of the study, where the researchers will see how the drugs interact in an individual.

Then I'll return the next two days for follow-up bloodworks and if I'm group A, I'll skip a day and then return to Hamilton for two more days of blood draws. (That's another reason I'm wishing for group B; to reduce the number of treks down the 401.)

After the big experiment, I'll simply taking the Regorafinib until:
  • It stops being beneficial
  • The side effects aren't tolerable
  • The study is discontinued
I'll need to have my blood tested weekly for awhile to ensure my liver function isn't affected, which is a risk of the Regoranfinib, but my nurse said I can do those in London. At that point, I'll only have to go to Hamilton on days 1 and 21 of the 28 day cycle. Oh yeah, I'll take the Regorafinib for 21 days and then have a week off.

So after the first and fourth week after my start date, the trips to Hamilton will decrease. Of course, that's if all goes well, which of course, it will. (Do you like my optimism?)

I'm quietly - and internally - excited about this clinical trial. Quite honestly, I was too tired, sore and stupidly busy at work to generate too much enthusiasm today. I'm sure once I get the confirming phone call and figure out the logistics of the timing, I'll feel more excitement (and nervousness).

I'll need a colour-coded calendar to keep track of all my trips to Hamilton, but at least I'll have appointments. And it won't mean chemo.

The details are complicated and they're subject to change. I probably have one or two things incorrect too, but you get the general gist.

I'm crossing my fingers I get the phone call tomorrow . . .


Tuesday, August 23, 2011

Regorafinib girl

Unless something freaky shows up on one of the tests I underwent today, I get to participate in the Regorafinib clinical trial. In fact, I may start it as early as next week. Yowza! When things get started, they move pretty fast. As A, my clinical trial nurse said, once we get our hooks in you, we don't let you go.

In June, Dr. H indicated I'd need a measurable lesion of at least one centimetre to participate in this study. This requirement worried me since my tumour had shrunk to 0.7 cm - a reason to celebrate - but, over the past couple months, I've been hoping it would grow, and it felt wrong. But apparently, the final study procotol doesn't specify a measurable lesion. As long as my heart and kidneys are healthy (and I'm 99 per cent sure they are), I can participate.

Today, I was subjected to all the necessary pre-study tests, and as a result, I don't feel so well tonight. First I filled six vials of blood and peed in a cup (to assess my kidney function), then Dr. H performed a physical exam. After that, it was off to the radiology department to drink my peach-flavoured radioactive contrast, get another needle inserted in my arm to push more contrast during the procedure and undergo a CT scan.

By the time my scan was done, it was 1 p.m. Since I hadn't eaten nor drank anything but three cups of the radioactive juice, I felt sick. So off to lunch my sister and I went. But I ate too fast, which bothers my fluid and gas-filled belly, and I've been uncomfortable ever since.

After noshing, we headed to x-ray for an ECG to ensure my heart is healthy, and the test showed normal sinus rhythm. I also needed an echocardiogram, which my nurse couldn't schedule for today. But as I was in x-ray, I asked how long the test would take and grumbled (in a pleasant way) about driving 1-1/2 hours for a 20 minute test. The woman working on the reception desk took pity on me, spoke to a technologist and squeezed me in this afternoon. Their generosity and thoughtfulness means I don't have to drive back to Hamilton tomorrow afternoon and my pre-study tests are all done.

Dr. H will have all the reports tomorrow and I'd be shocked if he discovers any issues with the test results. I expect a call from my clinical trial nurse tomorrow or Thursday confirming my participation and informing me to which arm of the study I've assigned. It may all begin on Tuesday. Participation appointments are pretty intense for a few weeks, but then my time commitment tapers off.

Study details
All participants take Regorafinib, which attack three pathways in cancer cells. This agent by itself has been studied in clinical trials and it's been shown to work effectively on tumours. This study is a phase I clinical trial to learn how Regorafinib interacts with medication individuals may take for other conditions to determine if it's safe to take the them together.

Those who participate do so to get the Regorafinib. I know that's what I'm doing. I'll go into the specifics of the study tomorrow because I'm tired now. But I know many people will be checking my blog tonight and tomorrow morning to see how my appointment went today.

Yay! I'm going to be part of this clinical trial. I'm excited, nervous, tired, anxious and relieved. Dr. H said the Regorafinib should dry up my ascities within days, which means I'll be able to get the pigtail out shortly after I start taking the drug. I'm also thrilled I can tuck chemotherapy in my back pocket to pull out if and when I need it. Hopefully, by the time I need to assess treatments again, some new option will be available for me.

For now, I'm placing my bets on the Regorafinib to buy me some more time to live, laugh and love.

And for those of you who pray, can you put in a word with the Big Guy and ask for group B (you'll understand tomorrow).


Goodbye Jack

Yesterday, when I learned Jack Layton died of cancer at age 61, I'd felt I'd been kicked in the gut. Even though he was the leader of the official opposition, he was portrayed as a common man, and his fight with cancer made him even more of an everyday Joe. When he lost that battle yesterday, this stupid disease claimed another awesome individual, which made me sad.

Two days before his death, he was inspired to write a letter to all Canadians. In it, he wrote a paragraph to other individuals fighting cancer:

To other Canadians who are on journeys to defeat cancer and to live their lives, I say this: please don’t be discouraged that my own journey hasn’t gone as well as I had hoped. You must not lose your own hope. Treatments and therapies have never been better in the face of this disease. You have every reason to be optimistic, determined, and focused on the future. My only other advice is to cherish every moment with those you love at every stage of your journey, as I have done this summer.

Today I head to Hamilton with the hope Jack mentioned. I'll learn if I'm accepted into the clinical trial today and probably discover the nitty gritty details of what the study will specifically entail for me. It's a new treatment, but maybe it will carry me over until an amazing breakthrough is discovered. It will give me more time to enjoy those moments with my family.

Goodbye Jack, may you rest in peace.


Monday, August 22, 2011

Double digits

I need a weekend to recover from my weekend.

Yesterday, my beautiful daughter entered the double digits by turning 10 years old. It's hard to believe it's been a decade since the rigamarole of her birth. It involved pitocin, not progressing past five centimetres, a late night c-section and Tara's crying arrival at five seconds to midnight.

To celebrate her birthday, my little monkey had seven friends over for a swimming/sleepover party. Pizza, chips, decorate-your-own cupcakes and pop rounded out the celebration. To prepare, we cleaned and shopped Friday night and Saturday.

During the festivities, Michael and I chauffered, cooked and chaperoned. For the most part, 10-year-old girls are loud but can amuse themselves. I firmly, but groggily, told them it was time to go to sleep at 2 a.m. (Oh yeah, I'd been asleep before then and was awakened by screams and doors banging when they were trying to scare each other.) They didn't end up sleeping until about 4 a.m. but I used my best firm-mom voice.

The exodus of the girls involved another round of cleaning up before the family came to celebrate with a BBQ and cake yesterday afternoon.

Whew! I'm exhausted. I'm full of gas, which contributes to my bloating unwell feelings. My port site is sore (from all the activity)? I need another weekend where I can just rest and relax. Luckily, I have another week of work and then I'm off for 11 days. And of course, I head to Hamilton tomorrow to learn about the direction of my treatment.

Time to turn the focus from Tara to my medical situation (then to enjoying time together as a family). I need to take it one situation at a time.


Thursday, August 18, 2011

If only

Midas' touch turned objects to gold. The miller's daughter in the story of Rumpelstiltskin could spin straw into gold. Why couldn't the fluid regularly oozing out of my body be valuable too?

Perhaps the ascities could be oil, which would cut down on my gas expenditures. Of course, the price of gold is astronomical, so why not stick with the theme of the stories and wish it were liquid gold. Then I'd have reason to celebrate its existence. Oh, the things I could do.

Since having the pigtil inserted on Aug. 2, I'd drained over 6 litres of the pinkish fluid. That could have been two trips to the hospital for draining with the giant needle. It would have been two time periods of filling, uncomfortable nights and a squished stomach.

Even though I miss the hot tub and I'd love to go for a cool, refreshing swim, I'm thankful the port helps keep the fluid build-up at bay.

Of course, if it were liquid gold . . .


Wednesday, August 17, 2011

No choice

When I talked about the clinical trial yesterday, fretting about its dangerous side effects, I said I have a choice. That's not entirely true. While it's factually correct I'm not obligated to participate in this study, my only alternative is chemotherapy; a treatment with only limited success for me and my type of cancer.

Yes, this study is more dangerous than the Olaparib trial. People have died on the drug. The big unknown about the interactions between the drugs I'd take is scary. Even the most common side effects (experienced by more than 10 per cent of patients) of being on Regorafinib alone don't sound nice:

- constipation, diarrhea, hair loss, headache, high blood pressure, increased blood levels of the pancreatic enzyme called lipase, inflammation of the lining of the digestive tract and of the oral cavity, loss of appetite, nausea, pain (joints, muscles, abdomen, chest), reduced levels of minerals in the blood including calcium, sodium and phosphorus, reduced numbers of red blood cells, reduced numbers of virus-fighting white blood cells, reduced function of the thyroid gland, shortness of breath, skin changes including rash, painful reddening of the skin with or without blistering, itchiness, redness, dryness, and tingling and numbness of the hands and feet, taste alteration, tiredness, voice changes/hoarseness and vomiting.

Those are the most common and benign ones experienced. They escalate from this point (but of course percentage of patients who experience them decreases) to the worst case scenario of death.

But if I look at the other side of the treatment coin, patients die while on chemotherapy. This fatal cocktail causes heart attacks and fatal reactions. It's a toxic concoction designed to kill cells - good and bad - inside the body. This treatment option has its own ugly list of side effects, many of which I've already experienced  - twice. As a result, I'm not exactly eager to hop on the chemo bandwagon again.

So, despite the risks, my choice has to be the clinical trial. It may work to give me more time. Perhaps when I'm ready for treatment again, an amazing research breakthrough may give me different, and better, options. Perhaps the Regorafinib will beat those cancer cells into submission, at least for a while. And I know, I always have chemo in my back pocket.

Of course, I still have questions and concerns about the clinical trial, but if I qualify - and it's still a big if since I don't know the size of my tumour and if it's grown to the minimum measurable size - I'm going to sign on the dotted line.

Regorafinib may help me, or the results of my clinical trial may help someone else. It may lead to new, different or novel approaches to treating this awful diease. Who knows, maybe someone else volunteered to be on a clinical trial for a drug that may help me down the road. All of us who volunteer to participate in studies are guinea pigs, not only trying to improve our medical situation, but to help those brilliant doctors and scientists come up with a better way to treat (and beat) cancer.


Tuesday, August 16, 2011

It's a go

I heard from the clinical trial nurse yesterday and the Regorafinib study is active and accepting guinea pigs, aka subjects. (Incidentally, I continually write clinical trails, which is ironically accurate because the act of participating in a study is following the path less traveled and unexplored. But I digress.)

After talking to the nurse, A, yesterday, I felt a weight was lifted from my shoulders. I have a clearer direction. I will soon have action. It drove me absolutely crazy to be stuck in limboland with my port stuck in my belly, discomfort rippling through my body and my thoughts careening around this dark, murky world of the unknown.

I received a fax with the study protocols, which I examined last night. My initial reaction: Holy cow, this is dangerous - and some of that invisible weight piled back on my shoulders. Like the little white rats in the lab, there's a risk of death with the study drugs. Five people died on regorafinib (as of October 2010, over 500 people had taken it). There's approximately a one per cent chance of dying because of the study drug. The paperwork also warns about heart problems reported with one of the test drugs that I could be taking (depending on the arm of the study on which I'm placed).

Of course, every reaction, side effect, potential outcome must be disclosed in the paperwork. So it's everything that could happen if I choose to be part of the study. Generally, I'm healthy - except for this darn, stubborn cancer - and I can take all kinds of drugs and foods without side effects. In a way, I'm the ideal guinea pig. And the only alternative is another round of chemotherapy, which is effective only short term.

The serious, dangerous tone of the paperwork gave me pause. I have questions. I need to draw up my pros and cons list to ensure I'm following the right path for me. I'll take time to converse with the big guy upstairs. Despite hating limboland, I'm now scared to move forward and afraid to stay where I am.

My poor little brain is going to get a workout over the next few days processing the information and coming to terms with it. I have one week, because next Tuesday I head to Hamilton to sign the papers, talk to the doc and get my CT scan done to see if I have a qualifying, measurable tumour.

Deep down I know I'm going to do the study, despite its risks, because I don't really have a choice if I want a fighting chance.

Rock, hard place, little old me.


Monday, August 15, 2011

A different list

Even though it would be easy to slip back into whine and complain mode, I'm going to start the week with some positive comments by listing things I love:
  1. That my blog usually gets over 1,000 hits per week. Yes, I know that includes folks who come back multiple times to read comments, etc., but it's encouraging.
  2. My readers are near and far, familiar and unknown. A special hello to Bridget and Jill who made comments last week. I get such a lift to know people follow my journey and they're behind me. (Now, I know Blogger doesn't allow everyone to comments, and I've experienced that same issue on my blog and others I follow. I don't know how to fix it. I don't even know how to complain. But if you can't comment and want to get me a message, I'm at
  3. Warm, humid weather (aka summer) is returning to Southerwestern Ontario this week!
  4. It's payday.
  5. My friend, Linda, is getting married in October and I attended an 80s-themed stagette on the weekend with some awesome friends.
  6. My in-laws watch the kids all summer so I don't have to worry about camps and child care.
  7. The coffee in my cup this morning is hot, sweet and just the way I like it.
  8. My daughter's soccer tournament was Saturday, which means that activity is done for the year, leaving Monday and Wednesday nights free for a few weeks.
Of course, I love all the usual things too - my family, friends, God, the medical support system, etc. But I didn't want to yammer on with the usual list but provide a different perspective this morning.

Can you identify eight different ways you're thankful? It's a good way to start a new week in mid August.


Friday, August 12, 2011

It could be worse

Every day brings its own challenges. We all have them. I have a friend who has trouble staying asleep at night so she always feels tired. Another friend was in the London Life bus accident a few weeks back, so she's struggling with the after-effects of that traumatic event. Another has aches and pains from a knee injury, a cousin has sciatica . . . well you get the picture.

I've complained about my current woes in my blog earlier this week. In addition to those, I've been worried my port site was infected. This freaked me out because I know the biggest risk of these drains is infection and if that happens, the radiologist would have to remove this one and insert a new one in another location. I didn't think I could handle that scneario. But my home care nurse told me yesterday afternoon the site looks good and normal. I asked about the pain and she shrugged as if it were no big deal.

But it's a big deal to me. Sometimes I have to moan and bend over from the discomfort. I realized last night, the culprit may be gas. Apparently, if the bowel is awash in fluid, it produces more gas. Even with the pigtail, I can't eliminate all the ascities; only that which comes in contact with the drain. So I'm sure I've got lots of fluid sloshing around and as a result, I'm full of gas, which would explain the bloating, discomfort and general unwell feelings.

But even as I whine about my latest complaints, I have to be thankful. I've been reading the blog of a woman who is attempting to beat myelodysplastic syndrome through a bone marrow transplant. She (and her husband) are having a horrible time with the treatment and side effects. She vomits blood, has mouth sores and mucus, has no energy and is completely hospital bound. She can't be exposed to germs and she gets blood transfusions regularly. They're waiting to see if the transplant will take to give her a fighting chance. When I read her blog, I feel sort of thankful for my situation, as uncomfortable as it is.

Even when my situation is bad, there are others who are far worse. I have to remember that.

It probably won't stop me from moaning, complaining and even crying, but it does make me a little bit thankful.


Wednesday, August 10, 2011

Wearing down

Like a rock on the beach, I'm steadily wearing down from the relentless waves washing over my surface. Although this water may be relatively gentle, under its constant ebb and flow, my rocky exterior doesn't stand a chance.

Except for the unexpectedly painful port procedure, none of my current "complaints" are huge, but they all add up to a situation where my optimism, enthusiasm, energy and zest for life are waning. I don't like it, but I don't know how to recapture it. I feel so out of control right now.

Items I continually seem to whine about these days include:
  • Feeling tired - I know producing cancer sucks up energy, as does healing. I'm sure creating ascities can be a drain too (pun intended). Despite eating and (mostly) sleeping well, I continually feel exhausted.
  • Discomfort - While I'm only in pain occasionally, I always feel discomfort. My stomach hasn't felt "normal" since the port insertion (and even before it was squished by the fluid). Gas plagues me, causing pain. Eating too fast or not eating often enough hurts. My abdomen feels like it's reacting in disgust and shying away from the new kid in town, aka the pigtail, by throwing a little hissy fit. The discomfort makes me walk slower and assume a slightly stooped stance.
  • Draining - I worry about the whole draining process. Some days, I can't get any fluid for hours, which makes me fret about blood clot blockages and whether the port is working correctly. Then I'll drain off about 500 mL later in the day. I know the entire process depends on where the pocket of fluid is situated in comparison to the port, whether the pigtail is pressed up against the walls of my belly, which blocks the drainage holes and the laws of gravity. I know I'll get used to it but I'm dissapointed I'm not able to drain on demand, especially since I know fluid is in there.
  • Inconvenience - I don't have the hang of this bag/draining thing yet. It still embarasses me. I'm worried about people catching a glimpse of my fluid-filled bag or tube and disgusting them. I feel restricted in my movements and activities because I must worry about draining, emptying and wearing the paraphenalia under my clothes.
  • No action plan - I still don't know what treatment option I can pursue. I called Hamilton yesterday to learn the site hasn't even been activated for the clinical trial yet. (Note to self: When Dr. H says days, it means weeks.) I know ethics boards and medical administration move slowly, but I'm extremely anxious to know if I qualify. In addition, I feel every day I don't fight this cancer is one where it's establishing its position in my body and spreading around. I know I "want" my tumour to grow to one centimetre so I have a measurable lesion, but I certainly don't want the cancer to make its way into other organs or areas of my body. I'm extremely worried about sitting around and waiting.
  • My support system - I'm concerned about the mental health of those around me who are constantly worrying. I hate being the cause of of such stress. I hate being dependent on Michael to change my dressing every day. I loathe having to ask for help with little tasks. I abhor being the cause of all of this drama.
All these little complaints, day after day, wear on me. I feel I'm an emotional drag and tend to withdraw from others as a result, which, I know, does me no good because I'm blocking out my support team. I regularly feel on the verge of tears because of what I'm putting everyone through. I know I have lots of things to be thankful for, and I'm trying to focus on these good things, but it gets harder each day as I'm worn down.

I need to move forward, but I must continue to be patient.


Sunday, August 7, 2011

Slow and steady

I thought I'd give you a quick update. I'm improving every day. While my port site is still sometimes slightly sore, I've almost weaned myself off all pain medication and I can move around freely, albeit a bit slower. I still tire easily and I'm a little dizzy sometimes, but my situation has vastly improved since Tuesday.

My home care nurse brought me some little red caps (for lack of a better word) on Friday to put over the port and drainage tube. Now I can disconnect myself from the drainage equipment, which is incredibly freeing. Even though I was only tethered for a few days, it's very inconvenient to drag everything around with me. I can't even imagine those who must be hooked up to a drainage bag all the time!

It also means I can shower! Aaahhh! While I was washing my hair in the kitchen sink and taking very thorough sponge baths, there is nothing like the feeling of water coursing down my body to make me feel clean. It's one of those things I take for granted every day. (Of course, I miss the hot tub too, but that's a luxury rather than a basic activity.)

Being untethered also prevents painful accidents. Yesterday morning, I was getting a bowl for some cereal. I turned to walk across the kitchen but my tubing got caught on the drawer handle and I yanked on the port. Even though the experience ended up being more scary than painful, I burst into tears. I was terrified I'd yanked the pigtail out of my belly (even part way) and I'd have to go through a repair job or the entire experience in a different location all over again.

With the red caps, I can connect to the paraphenalia to drain a couple times a day. If I do it at home while working on the computer (like right now) or watching TV, I don't have to subject anyone except my family to the experience.

Michael is awesome and helps in any way he can. He changes my dressing and moves the drainage bag around (Yes, I named it Wilbur, but it turns out I never use that name. I thought it might be cute, but I just call it "the bag." Oh well.)

When the kids came home from their grandparents after I got the pitgail, I asked them if they wanted to know about the procedure and what it meant. Noah immediately said he didn't want to see the port. When I was draining yesterday morning and carrying around the bag of ascities, he told me it was "nasty." He wants nothing to do with any of it. Tara wanted to see the tube and isn't squeamish at all. I have very different kids.

I've been told I can drain up to 2L a day, but I'm only getting between 500 to 1,000 mL a day. But if you think about it, if I was accumulating that amount in my abdomen daily, I'd be sporting a giant, very uncomfortable abdomen yet again. So it's good I can siphon off the ascities while I (not so patiently) wait to hear about the clinical trial.

Hopefully this coming week, I can start moving in the direction of treating this disease rather than just managing its by-product. But I am thankful I can manage it by draining off the ascities rather than continually filling up and then being drained via the long needle. That was no fun whatsoever. None of this is ideal, but I often remind myself, it could be worse.


Friday, August 5, 2011


I'm learning to be better at being patient, but sometimes that's hard to do. This is one of those times.

I'm recovering from my little "procedure" on Tuesday where the radiologist stabbed me with an giant needle (aka the ice pick) and left a tube in my body. I called the doc who did the procedure on Wednesday morning to ask if my reactions were normal and she assured me the blood and clots coming out with the fluid, and the pain were normal.

She went on to tell me my body is experiencing muscles spasms in protest of the foreign object inserted into it. I'm sure my bowel is not very happy either after being sucked in the drainage tube. As a result, I'm still quite sore, and my stomach and abdomen do a weird cramping/rolling motion every once in a while. She went on to tell me eventually it'll heal and I'll even be able to tug on the port without experiencing any discomfort. I look forward to that day, but I have to be patient and let my body heal.

I'm also quite anxious about the clinical trial. When I talked to Dr. H a week ago Tuesday, he said there were only a few paperwork details to work out and then I'd get a call from the clinical trial nurse. Every day I anticipate the phone call inviting me to Hamilton to discuss the nitty gritty details of the study and get the ball rolling on the tests to see if I qualify. Every day my answering machine yields no such information.

On one hand, the extra time gives the tumour time to grow to the required 1 cm or bigger. But then again, it's also time for the cancer to discover the parents are away from the house and it's time to party. I just don't want to festivities to get too wild so something else gets damaged.

I also need to plan my daughter's birthday, our week of vacation at the end of the month and other activities, which is hard when you don't have a plan and don't know what your future holds. I want a course of action and I yearn to get started!

But I need to be patient. May God grant me the strength to wait.


Wednesday, August 3, 2011

Day 2

It's amazing what some strong pain killers and a good night's sleep will do for a girl. You read right - a good sleep.

I was very worried about sleeping last night. Even when I crawled into bed and tried to get into my favourite position, I cringed in pain from the port. I usually sleep on my left side, which is why the doc put the pigtail there; to let gravity help with the drainage. But there was no way on earth the pain would let me assume my normal position.

So instead, with the help of my dear husband, who arranged the pillows and tubing, put cream on my feet and covered me up, I was able to lay on my right side. And I didn't move from that position until I woke at 5:30 this morning. I dreamt of full drainage bags and ascities, trying to dress for work with the bag and revealing accidents. Obviously that's on my mind.

I've deteremined, there's no conceivable way I could wear this drainage bag out in public. Even when it's empty and I strap it to my leg, the end of it falls just above my knee. It also slides down my leg very easily. When it starts to fill and gets heavier and heavier, the gravity/sliding problem gets even worse. And no one wants to see the contents of the bag. Instead, I'll get the nurse to show me how take the bag on and off so I can leave Wilbur at home when I go out. Since I'm only supposed to take about 2 L off a day, I can do that as I watch TV in the evenings, on my comfy couch, in the privacy of my own home and away from public eyes.

Besides being extremely thirsty this morning, I feel pretty good. (Yes, I'm drinking lots of water to replace the fluid.) I only needed a couple extra strength Tylenol to take the edge off. I've managed to wash my hair in the kitchen sink and give myself a sponge bath. I have to converse with the nurse about how to take a shower. I can't get my dressings wet because then they'll be breeding grounds for bacteria.

I've even enjoyed had a cuppa joe and some breakfast.

My big concern is the colour of the fluid flowing into my bag. When I turned on the spigot this morning, the ascities that flowed out was awfully red. So, there's quite a bit of blood in it. I don't know if that's normal or if I've got something terribly wrong going on in my abdomen.

A home care nurse is supposed to visit today so she can show me how to flush my port and check my wound. I'll be able to ask her if this is red fluid is normal after a pigtail procedure or whether I need to visit the emergency room. God, I hope everything is okay so I can heal and carry on.

So, I'm house bound today, trying to figure this whole thing out. I have my work computer here so I'm going to try to be useful too. That was the whole point of this pigtail port; to be able to function and live as normally as possible. It may just take a few days for me to determine my new normal.


Tuesday, August 2, 2011


I'm not going to sugar coat it, the procedure to put the port in was far worse than I anticipated. Perhaps I'm unpleasantly shocked because I thought it'd be similar to paracentesis, which is the process to drain the ascities fluid. While that's no piece of cake because it's painful, I feel only mildly uncomfortable afterwards. So I did not expect to feel as though I'd been stabbed with an ice pick after today's procedure.

The operation itself was super quick. The radiologist froze my abdomen and inserted the tube in about 10 minutes. The prep work of draping the cloths, using ultrasound to find the best pocket of fluid, swabbing my abdomen with antiseptic and unwrapping all the necessary paraphenalia almost took longer than using the needle to freeze the layers of my belly and then jabbing me with the needle/tube.

Once the tube was in place, the draining into the vacutainers began. Luckily, I felt relief almost immediately as the pressure on my ribs and lungs started to dissipate. The doc said since I was able to drain 4.5L last time without feeling lightheaded or dizzy afterwards, she was going to drain about the same before hooking me up to my drainage bag and sending me on my way. But after about 3L, a electrifyingly painful sensation rippled through my abdomen. It felt as though my stomach and innards (yup, that's the official term) were shocked with a taser gun. The pain rolled through my body a few times and I had to breathe through it.

As a result, the radiologist stopped the drainage. She said my bowel probably got sucked up into the tube, comparing it to drapes getting stuck in the vacuum. Well, let me tell you, if those drapes could talk they'd say, "OW!"

So, I'm just getting over the pain-induced sweats when the freezing around the port starts to wear off. Oh my God! I expected some discomfort, but I didn't expect to feel as though I'd been stabbed. I couldn't move, I could barely breathe. I wondered how the hell I was going to move to put my clothes on and go home.

I asked for some pain killers and the nurse gave me the equivalent of one extra strength Tylenol. I though, "Are you serious?" When that didn't touch the pain, she got permission from my doc to give me two Tylenol 3s. Even with that running through my system, I had a hard time getting out of bed, donning my shorts and easing my butt into the wheelchair for the trek to the car. I felt every single bump on the journey and it was challenging to get myself situated in the car. Once there, my sister gave me even more painkillers and half an hour later when they kicked in, I could converse, eat and move around a bit.

Including the 3L in the OR and the fluid I've collected in my bag, I've drained about 4.5L already today. I've got the spigot turned off right now, but I know if I slid it into the on position, I'd probabaly collect even more because I'm still quite round and bloated.

Apparently, I can't drain too much each day because I could become extremely dehydrated. Personally, I'd like to get rid of it all in one shot, but apparently that's dangerous. I'm supposed to start with about 2L per day and up the amount as I feel I can tolerate it.

As for the entire set up, the port sticks out of my belly and is noticeable, the drainage tube is thick and long, and the bag gets heavy as it fills with fluid. I only have velcro straps to secure the bag to my leg, so it slides down and sticks out the bottom of my capris. It's cumbersome and going to be tricky to hide, but I'll have to figure it all out. This is my companion until I start treatment and get the cancer cells to stop making fluid.

Speaking of companion, I'd decided to name my bag Wilbur. I figure if I've got a pigtail catheter, my bag may as well have a piggy name. Wilbur was the name of the pig in Charlotte's Web. As for the pigtail, it's apparently shaped like a pig's tail on the inside. It has little holes in it, designed for catching the fluid.

So, right now I'm coming to terms with being knocked down by this whole experience. I had no idea how debilitating this would be and I can't even begin to anticipate how long it will last. I seriously expected to hop off the bed when I was told I could go home today, and skip down the halls out of the hopsital to continue on with life.

Yet here I sit on my couch with my feet up. I have pillows, water, coffee, painkillers, a book, the TV remote, my Blackberry, the phone, a blanket and my computer all within arm's reach. I can feel the painkillers starting to wear off and my stomach is growling a little. I will have to address both those issues soon. Luckily, Michael is creating a big pot of chili and the minutes until I can pop open the pill containers to shake out a few more of the magic tablets are dwindling down.

Today I experienced an unexpected bump in the road of my cancer journey. I didn't see it coming and it was sizable, so it jolted me a bit. I'll recover, but it may take a bit of time.



It's port day

Or pigtail day.

I do know, the timing is perfect (another p) because I'm ready to be drained again. Yup, in keeping with the p theme, the procedure is paracentisis.

While water certainly helps (swimming in the lake, hot tub) because it helps support the fluid and offers my body some relief, I can't stay in H2O constantly. So I'm getting incredibly uncomfortable again. The pressure on my ribs is consistent and my back whimpers in protest far too often.

As for the procedure today, I'm not too nervous because I haven't allowed myself a lot of time to think about it. I can't change it. The port and it's attached tubing and bag will help make me more comfortable. So I've been telling myself, "It is what it is, deal with it." and "Suck it up, princess, people have to deal with ports, bags, procedures and situations far worse than this one." I'm sure it will be fine, I'm just a little squeamish and there's the whole fear of the unknown.

anyway, my sister is almost here and then it's off to Hamilton we go.

Wish me luck,