Goodbye you suck

Good-bye you suck
Never really liked you
- Shiloh

These lyrics blast regularly from the square, black speakers of the new CD/iPod stereo system my daughter, Tara, got for Christmas. It seems to be one of her favourite song selections and I have to say it aptly describes my feelings for 2011 on the eve of its demise.

Overall, this year was the worst of my life. Oh, it started out promising enough with the Olaparib clinical trial drug that was working to keep the cancer at bay. I was feeling great, working on some satisfying projects at work and eagerly anticipating Michael's sister's wedding. I was optimistic, happy, planning, working out and getting healthier.

At the end of May, I learned the ascities, and therefore, the cancer was returning. While the scourge allowed me to enjoy the wedding in mid-June, I started to feel the signs and symptoms toward the end of that month. Then all the crap started - waiting for the new clinical trial drug, its debilitating side effects, enormous stress at work, lots of paracentesis, the drainage tube insertion and inconvenience, emergency surgery, hospital stays, more waiting, all the illness, vomiting, stomach woes and new treatment. Ugh.

As 2011 ends, I gleefully kick it, and most of what it brought to my life, to the curb. While I'm sure I won't be awake to welcome 2012 into my home, I anticipate it will gently join me between the flannel sheets of my warm bed where I'll be curled with Michael to wash its promised goodness over me. I know it's going to take some time for it to fix the mess 2011 is leaving behind, but I'm hoping this 2012 will be a strong, healthy, take-charge year that takes no bull and brings only health and happiness to us all.

I look forward to it.

Good bye 2011, you truly did suck.

Tina

Archangel Raphael

Yesterday morning, I sat at my desk contemplating my situation. My belly is swelling with ascities (and possibly gas) and, as a result, I wonder if the chemo cocktail I'm taking is actually working. I figured at least this side effect would be much less, if not completely gone by now.

So as I did my angel card reading, these thoughts and worries swirled around in my mind. I asked God to give me guidance and direction. I asked the angels to speak to me. And I pulled one of the two big gun angels: Archangel Raphael.

His description says: "The healing angel is with you, supporting your healing work. Your prayers for healing (for yourself or others) has been heard and answered by Archangel Raphael, the supreme healer."

Drawing this card gave me comfort and hope. As a result, I trust the treatment is doing something to fight the cancer, even if it ultimately isn't the only one I receive. It may be completely psychological, but I'm sure even mental hope and trust can go a long way in the healing process. I believe in God and angels, so the appearance of Archangel Raphael card lifts my spirits.

That can't be a bad thing.

Tina

A bit rocky

I'm starting to sense a bit of a pattern with these chemotherapy treatments. I haven't examined the little black book where I write all my treatments, side effects, medications and experiences in detail, but my general impressions are:

• I feel really quite good the first two days after getting chemo. My spirits are high, I have energy and I can generally eat and enjoy smaller meals. I'm sure the strong anti-nausea medication and steroids really help with this general feeling of well-being.
• I start to feel nauseous and have stomach troubles around noon on the Sunday after Thursday's infusion. This also means I start throwing up when I eat too much. Just for the record, the definition of too much can vary by day or type of food. Some of my tastebuds also seem to take a hiatus for a few days. Food and drink just doesn't have as much flavour and therefore, it isn't as enjoyable. While I thoroughly enjoyed Christmas lunch on Sunday, some of it came back to haunt me that afternoon.
• Monday seems to be my worst day. I feel tired, dizzy, headachy, bitchy and generally unwell. I try to sleep. I'm generally not good for much. I really shouldn't be around people very much. I also continue to vomit when I try to eat; much to my chagrin.
• Tuesday = weak and tired. Vomiting may be also be present.
• Overall, mornings tend to be better for me. I have been able to drink coffee and eat breakfast with few issues, but the problems build as the day progresses.

Then I think I turn around and feel slightly better, but the vomiting comes and goes at will. I seriously wish I could control it. I don't like to be able to expel a layer of food practically on demand. Although, I have to admit, when I'm done, I often feel better.

I have this mental delimma: Do I try to eat and if it ends up in the toilet, oh well. I didn't get the nutrients and calories from that food, but I got to enjoy it as I ate it? Or do I avoid eating most things, stick to liquid supplements and Gatorade, so I don't throw up and hope what I do manage to consume gives me the sustenance and energy I need? The first option is actually more fun, but psychologically seems so very wrong.

I'm also still struggling with sleeping through the night. I go to bed around 9 p.m. because I'm so tired, then wake around 3:30 a.m. for the day. I tried a different strategy last night by saving my lorazepam for the middle of the night, hoping its mind-calming properties would coax my body to return to slumber. But when the digits on my alarm clock read 5:38 a.m. and I was still awake, I arose to brew some Hawaiian coffee and turn on my computer. I think I may have to talk to the doc about an actual sleep aid.

To try to catch up on my much-needed sleep, I attempt to nap during the day, but I usually end up lying in bed for an hour or two instead. While this relaxational resting is good, I need actual shut eye. The purple bags under my eyes are testament to my sleep shortage. I also know I need the rest and rejeuvenation for my body and cells as I make my way through this recovery week. It's during this time when my blood counts will drop to their lowest before picking back up.

One good observation I've noticed over the last couple of days is a lack of bruising. By this time last cycle, I experienced nose bleeds and mysterious bruises on my body, indicating dangerously low red blood cell counts. As a result, I had to delay treatment by a week and get a blood transfusion.

So far, I've got some tenderness on my hands, but the quarter-sized purple spots on my thighs, arms and hands haven't appeared. So maybe switching the chemo to Cisplatin and dosing it over two infusions is working to keep my levels in acceptable ranges so I can continue to get my treatments on schedule. Let's pray that's the case because I certainly don't want any more delays.

I have to admit, I'm a little frustrated in the lack of change I'm noticing in my health after two rounds (four treatments) of chemo. I expected the fluid/gas in my abdomen to be gone (and it seems to be bigger than ever). I thought the pressure on my stomach would cease so I could eat and not vomit. I'm a little worried the chemo isn't working - and that scares me a great deal. I don't want this stupid disease to have any more time to grow and wreak more havoc in my abdomen. I need treatment that works. The cancer must die now!

To alleviate this fear, I'm going to ask for a CT scan after my third round of treatment (infusions five on Jan. 5 and six on Jan. 12) so we can get a better understanding of what's happening inside me. Dr. W mentioned testing half-way through to assess and I'm going to follow-up with him to ensure we do just that. I think I could be more patient and cope better if I knew the chemo we've chosen is working. But, if this treatment regime isn't working, let's move on to another one that will. I've had enough.

But for now, I take it one day at a time, navigating the rocky road and all the pebbles, boulders, pitfalls and slippery sections along the way. Hopefully, one day soon, the path will smooth and picking my way along won't be such a physical and emotional feat.

Tina

A new, true meaning of Christmas

Words cannot even express how overwhelmingly full my heart is from the generosity I experienced this Christmas. This feeling isn't from the unwrapping of the traditional packages and presents, but from unexpected and surprising gifts that came directly from the heart.

As you know I almost died in September. When the doc came out of the emergency surgery and talked to Michael and Angie, the prognosis wasn't good. There was a good chance, I wouldn't make it through the night. If things transpired as he predicted, I wouldn't have been around to celebrate this Christmas nor fight this cancer.

A near-death experience can really add perspective, and drop the things like presents on the list of priorities. Yet, every year, we create a Christmas list and our family goes about diligently shopping for the ideal gift for those we love. This year, I half-heartedly put some items I'd like on a list, but I didn't really want anything because I just wanted to be thankful I'm here, celebrating with those I love. Michael took it one step further.

He knew what he wanted for Christmas. He wants to be with me, not only for this celebration, but for many more to come. The only way he knew he could help with that goal was to make a special request of those who buy him gifts. Instead of requesting a new set of guitar strings or parts to fix his bass guitar, in lieu of a new movie or a light for his Kobo ereader, he let his heart and love for me lead.

Instead of items, he asked those who buy him presents for a donation to the Run for Ovarian Cancer. He's donating all the money that would have gone to his gifts to those dedicated researchers who are striving to find better ways to treat this God-awful disease. He said he wants me to share his life, and the only way he knows how to do that is to give to those who are working to keep women like me alive.

I cried and cried. My heart swells with pride because of his love and generosity. He now has a big chunk of money that'll go to Team Tina and the Run for Ovarian Cancer. Unbelievable. I love him so much.

Then I received another generous surprise on Christmas Eve from my parents. My mom came into a small inheritance from a distant relative overseas during the past year. I was thrilled for her because as retired folks, my parents are now individuals who live on a budget. They've also worked hard all their lives and deserve to enjoy travel, a new car, fun activities, etc. (In other words, they need to spend that money they've worked all their lives to collect and have fun. It's theirs, spend it.)

But mom and dad generously decided to share a portion of that inheritance money with my sister and I. My mom handed me a cheque and said use it to fulfil an entry on my bucket list when I'm done treatment and feel better. I was astounded - and yes, I teared up again. This special gift gives me something to dream about as I fight through these next eight chemo treatments and their side effects. It provides my brain extra incentive to encourage the ninjas to work so I can do something fun to celebrate when the crap is all done.

So, while I enjoyed the usual Christmas celebratory festivities - the great food, the good company, the squeals of children's laughter, watching my children's face glow with delight at their presents, the packages I received (and feel slightly guilty about) - my true gift is the spirit of love and generosity I feel from these unexpected events.

Michael, you're an amazingly, loving, generous man. Thank you to all who listened to his request and gave him donations instead of presents. Thanks to my parents for sharing - when they certainly didn't have to - so I can dream of tropical beaches or foreign countries. And thank you for the other gifts I did receive. I am a very lucky woman.

I have been blessed to experience a differerent side of the true meaning of Christmas this year - and I'm overwhelmingly grateful.

Tina

Christmas joy

It's Christmas Eve (day) and I'm sipping on Hawaiian coffee, contemplating the day and smiling inside.

Today my family heads to celebrate Christmas in Wallaceburg with my parents, sister, brother-in-law and nephews. The house will be a beehive of activity and wafting with the awesome smells of turkey, potato dressing, potato croquettes and the accompanying fixings. Can you tell I'm looking forward to the food?

I'm also looking forward to the company. This year, more than ever, this season isn't about the gifts for me. I couldn't care less if I had one package to open. I want to spend time with my family and enjoy a delicious meal cooked by loving hands.

My sister went over to help my mom get ready yesterday and I felt jealously nostalgic. I wanted to be there too, peeling potatoes, baking cookies, singing Christmas carols and hanging out with my family. Those chores, done together while listening to and singing carols always help get me in the spirit. The chemo, tiredness, naps and illness have diminished my ho-ho-ho-ness. Unfortunately, it doesn't feel very much like Christmas to me.

But I'm deteremined to change that today. I will not let this Christmas slip by with a sense of mediocrity. That's why I brewed the special coffee we bought for Christmas for this morning. I'm also going to do my best to be cheerful and Christmasy today (even if I have to sneak in a little nap to do so). I get to be with people I love and celebrate our family, being alive, hope, joy and the birth of Jesus.

Of course, it won't hurt to hear the squeals of joy on the little kids' faces when they open up their toys.

One more sleep until the big man in red makes his appearance. Yup, that's tonight!

Merry Christmas everyone.

Tina

Up and at 'em

My slightly-swollen eyes slid open this morning to alight on the red, glowing numbers of 3:38 on my alarm clock. I inwardly groaned and rolled over in the warm, flannel sheets to try to return to the dreamland. But my mind had found the meandering stepping stones of my thoughts and decided to start traversing them instead of crawling back into the silky, grey crevice that led to sleep. And now, here I sit.

But I'm going to take advantage of this early-morning (bad) habit my body's adopted and head to the 24-hour grocery store to pick up my last minute items before the hoards descend. I only need a few things, but I'd rather gather them while the aisles aren't packed with shoppers.

So after a quick update about my chemo yesterday, I'll donne a baseball cap and head out the door.

Treatment was quick yesterday; done in three hours. I guess when you don't need blood nor a discussion with the doc about all the problems, the infusions themselves don't take too long. I sat uncomfortably in a chair because the beds were all occupied. But I ended up visiting with three different people, so I wouldn't have been able to sleep anyway.

The first is an old friend from high school who works at the hospital. I'm happy she dropped in for a quick visit and a Christmas hug. Then I ran into a friend from my cancer support group. I didn't know she was undergoing treatment so it was really beneficial to catch up with her situation. Then I met a woman I hadn't seen in a couple of years, who has breast cancer. It was good to see each one of them and each discussion gave me something to think about - friendship, love, optimism, hope, despair, longing, absence, etc. - which was good.

I did get my nap when I got home. I crawled into MY bed and dosed off for about 1-1/2 hours. It was heavenly.

Michael, bless his soul,  just got up to go to the grocery store with me, so now it's time to get up and at 'em.

Psssst, did you know it's only two more sleeps until Christmas!

Enjoy your Friday.
Tina

Tired, yet hopeful

I have two main complaints with my side effects right now: tiredness and gas. And if these are the biggest grievances, I'm really quite lucky. I have to take these good signs and wrap myself in them like the warm blankets they give you in the chemo suites. I need to relish the good stuff, because I was mired so long in the bad. Like I've mentioned in a previous blog, if you focus on the positive, it diminishes the power of the negative. So that's what I'm going to try to do.

This morning, I'm grateful I'm just tired and gassy. I'm experiencing less nausea and vomiting. I'm not dropping into the deep, dark, Dementor-filled well with chemo. I have not experienced neuropathy (loss of feeling in fingers and/or toes) nor taste changes, and I still have my hair. Okay, it's thinning significantly - and in the end the presence of hair doesn't really matter to the fight - but I am thankful its strands still grace my head and keep it warm. 

I'm hopeful these fairly minor side effects are par for the course for my entire treatment regime, but I'm not holding my breath. I won't get my hopes up, only to have them dashed when some new symptom pops up. But I'm going to roll with it for now, hope the chemo today doesn't put me down for the count for my Christmas celebrations and keep moving forward. I'm being hopeful.

The other day, I received a request for me to write about hope. To be honest, it threw me for a loop because I haven't been feeling that emotion very much lately. The pummeling cancer has subjected me to over the last few months has squashed many optimistic feelings. Yet, the comment got my brain churning to deteremine how I feel about hope right now and how it fits in my current journey, and I'll blog about it in the coming weeks.

But that request, getting treatment, feeling a little better and perhaps the imminent approach of Christmas has me feeling a little more hopeful over the past couple of days. It's amazing what a seed of an idea can generate.

As for the tiredness, it doesn't help my system is all screwed up. I'm regularly waking between 3:30 and 4:30 a.m. and staying up for the rest of the night. I try the meditation tricks and deep breathing to no avail. My mind kicks on its motor and proceeds to process life, love and what to make for dinner tomorrow night. Even when I try to nap during the afternoon, it won't rest, contemplating to-do lists and mundane, life items. So I either end up falling asleep early or going without. The chemo makes me tired and the lack of sleep doesn't help, so I'm in a losing situation.

But I'm headed to those warm blankies at the chemo suite and perhaps with some classical music on my iPod I may be able to get a little shut eye as the chemicals are infused in my body today. Some cancer-kicking ninjas, a warm blankie, a little nap and the company of my soul mate. How's that for hope?

Tina

Bottoms up

'Tis the day before chemo
And my goal for the day
Is to chug back the liquid
And make it all stay

The drug sheet insists
10 glasses is the min.
So I'll raise up my glass
And tip several beverages in

Carnation breakfast for lunch
With a cold water chase
Some toasty broth mid morning
For that quota to erase

Solid food, while yummy
Takes a backburner today
To get in those liquids
For treatment on the way

I need the protective sloshing
And lots of cleansing pees
For another chemo shot
To protect my precious kidneys

So raise your glass with me
Perhaps even a beer
But let's all use the liquid
To toast Christmas cheer

And death to cancer cells

Tina

Emotional effect of words

As a writer, one of the biggest compliments I can receive is feedback on how I string my words together to form a message. Lately, I believed I'd lost the ability, drive and/or energy to create compelling blog posts. When reviewing some of my earlier posts, I'd marvel I actually wrote a particular piece or came up with a clever turn of phrase.

But over the past few months, I've felt my writing has been so mundane, solely updating you on doctor's appointments, medical jargon and side effects. Part of this journey involves all that necessary information because it explains the day-to-day realities of my journey with cancer, the toll it takes on my body and the unsavory side effects, but it easily becomes tediously boring.

In my brain, I blamed the weariness of my long trek with my unsavory companion, cancer, and I lamented my loss of creativity. I felt uninspired, and more importantly, uninspiring.

Then yesterday, out of the blue, I was able to create an engaging blog about my unhappy dance with cancer. The words easily flowed from my fingers as I sat at my keyboard, so they'd obviously been percolating in my subconscious.

I haven't received a lot of feedback from my writing recently, which could stem from a myriad of reasons ranging from reader busyness, the lack of inspiring writing or the inability to post on blogspot, but I did hear from four people about yesterday's post via comments, emails and Facebook. The range of reaction surprised me a little.

Two were extremely bothered by my post, and the sadness and weariness it conveyed. Two marveled at my writing ability, and how I could eloquently express so much emotion and lucidity. I'd hoped for the second response, but the first one made me feel sombre.

When being honest, I can't predict the reaction of others. Nor do I want to assume what emotions my words will dredge up. But, along with one of the messages expressing sadness, one friend expressed the overwhelming belief I will beat this and live to step lightly in a dance of a different kind.

Not knowing how my readers will respond to my writing is part of the joy of blogging: I can put information, thoughts, feelings and very personal details online without witnessing the reaction. I don't see the pain, disappointment, joy, relief, inspiration, uncomfortableness nor sadness in their eyes. It allows me to be more honest than a real conversation because talking about some of these topics in person would be extremely difficult. (But that doesn't mean actual talks wouldn't be welcome either.)

More importantly, people don't need to share their reactions with me and can read from the comfort of their computer, processing the information and emotions by themselves. A blogging audience is not compelled to provide any feedback unless they want to do so. Being anonymous is part of its appeal.

But as I started today's blog, I emphasized feedback - both complimentary and constructive - is invaluable to a writer. I can only assess my work, understand how my words affect others or improve myself if I absorb the reaction of others. So thank you to those who do respond. I hope it helps me be a better writer.

In a way, I feel I should apologize when I make others feel uncomfortable with my writing, but that would be ingenuine. From the beginning, my goal has been to be genuine to the truth of this journey. So I will continue to write as I know best (and incorporating any constructive feedback from you), and hopefully, at least every once in a while, I'll be able to craft an interesting and inspiring blog that makes you sit back and revel in the truth of life.

Tina

Cruel dance

This is year three of my attendance at this party, with its energy-sucking dances and unusual refreshments. I must unequivocably state, the third time is not the charm when ovarian cancer is the host. In fact, this repetitive soiree is getting uncomfortable and I'm tired of the frenetic activity required to keep up with the myriad of activities and mental gymnastics.

Currently, I'm locked in my third tango with cancer. This dance partner has a steel-trap grip - no spaghetti arms on him - and the steps have grown more complicated than before. I struggle to keep up, often stumbling, regularly falling and increasingly uncertain I can understand what it's going to take for this malevolent puppetmaster to release his grip and let me rest.

Every day seems to bring some new requirement or complication too. I didn't get enough sleep, my stomach is roiling with nerves, my too-high dance shoes are pinching my toes, the food I tried to eat isn't sustaining me through the rigeurs of the moves or my body collapses in protest. I'm tired and frustrated, both mentally and physically.

Despite all the taxing requirements placed on it, my muscles are starting to atrophy. I've lost a lot of weight, but I've lost a disturbing amount of muscle. I am not toned at all and the cottage-cheese effect severely dimples my arms and legs. It's disgusting and embarassing. I've always been relatively fit and this muscular breakdown depresses my already challenged psyche. Being this weak, also does not make me an equal partner with the demon cancer during his cruel fete.

While the first two turns around the punchbowl in 2009 and 2010 were difficult with the side effects, mental dark-basement excursions and (somewhat) weakening body, this time is completely different. It's much, much harder.

The preparations also started earlier when I received the dreaded invitation to re-join the party in May. The ascities showed up in late June. The attempt at a different dance - the Regorafinib - produced horrific blisters and, possibly, internal damage resulting in my huge abdominal scar and two-week hospitalization. As a result, the date of the actual soiree was postponed until mid-November. Now I feel I'm stumbling, trying to catch up to an event that started months ago, in a compromised position.

I know attending this type of excursion three years in a row will justifiably exact a toll on a person, but I hate it. The first two tangos seemed so much more manageable in comparison. This party seems like it's going to go on for far too long, with horrifically discordant music, too-loud laughing and a sneeringly arrogant dance partner.

I long for a reprieve, where I can pack those torturous dance shoes - or better yet, throw them away - and head home to rest and recover. But I know I have to endure, because as much as I'd like to throw my sickeningly-sweet punch in cancer's face and leave him alone on the dance floor, that will allow him to win. That is just not an option.

Tina

So far, so good

If yesterday can be used as an indicator of how I will feel next Saturday, I may be able to enjoy Christmas after all. I ate fairly well, had energy and was in an okay mood.

In fact, I felt energetic enough to do some baking. A little girl in my house asked about Christmas cookies a few weeks ago and I told her we'd have to see how I felt. To be truthful, I also don't feel it's the ho-ho-ho season without a few cookies and squares around the house. While we cut back significantly, the house smelled delicious yesterday afternoon - and we have baked treats to enjoy as well. Of course, I was exhausted yesterday evening, but I only did it to myself.

I had a few side effects yesterday - a slight ringing in my ears, minor dizziness and some diarrhea (again) - but nothing unmanageable. But I did throw up through the night; much to my chagrin. I don't think the giant potassium pill I forgot to take until bedtime agreed with my chicken and after-dinner cookies. My stomach protested and I ran for the bathroom around midnight.

I know with my chemotherapy treatment again on Thursday and my blood levels dropping as the ninjas do their work, I'll have to take it easy and rest a lot this week to be able to enjoy the Christmas festivities next weekend. Luckily, I have wonderful families who are hosting the events and they'll ensure I don't overdo it. I also have everything almost ready, so I can focus on me and staying strong.

Keep working little ninjas and die cancer die!

Tina

Saturday morning check in

I've learned some of my regular readers worry when I don't blog the weekend after a treatment or medical intervention. To allay some of this anxiety, I'm providing a little check list on this snowy Saturday morning.

• I felt good yesterday. I got my last Christmas gift picked up and the rest of the presents wrapped. I feel prepared for the big day now and that makes me feel good.
• I was extremely tired by the time evening rolled around. I took a nap on the couch and then curled up in my bed at 9 p.m. Of course, I woke at 4 a.m. again this morning so I'm going to have to try to stay up a little later so my mornings don't start quite so early.
• I managed to keep all food and drink in my body yesterday, with no vomiting nor diarrhea. Yay! While most of my day consisted of a liquid diet to ensure there was enough room for fluids, I was actually hungry for dinner last night and had a couple chicken wings and potato wedges. I also treated myself to a few cookies. I miraculously managed to consume nine cups of fluid throughout the course of the day with no stomach pain or issues.
• The stinky chemo farts are back. The bright side of that smelly situation is my bowels are working and pushing the gas around. It's also a very normal chemo experience, which makes me feel slightly relieved.
• While I should keep up copious amounts of fluids, the 10 to 12 cup guideline is done.
• The anti-nausea drugs have been working well. I started feeling slightly sick around dinner last night, but the little pills quelled the feeling. Now I'm done the big gun, the Granisetron, which costs a small fortune, but hopefully I've expelled enough of the Cisplatin from my system it won't be an issue.

This blog isn't fancy, but now you're up-to-date. I have no idea what today will bring, but after I'm done my Carnation Instant Breakfast (with its two cups of fluid), I'm actually going to indulge in a coffee. The java will cancel out the hydrating effects of the instant breakfast, but I think it may be worth it so I can indulge in my little Saturday morning ritual of coffee and the newspaper. I'll work on replenishing the fluids later.

Tina

3/12 - Ninjas at work

We deployed the battle-ready ninjas yesterday morning and now they're invading my body, searching for and fighting those nasty cancer cells. After blood tests, a visit from Dr. W, and discussions about my vomiting, diarrhea and ascities, we continued on with the chemotherapy. Yay!

I was extremely relieved since I thought my body's attempt to purge all the liquids I'd consumed could prevent treatment. Despite feeling awful yesterday, another delay would have reduced me to a puddle of tears.

Instead, extra IV fluids accompanied the chemo yesterday and I received three bags of potassium, which my blood tests revealed was extremely low from the diarrhea. I also have some giant potassium capsules to take over the next couple weeks, which is fine by me if it keeps me on track with my regime.

Yesterday, I was exhausted. After only four hours of sleep the night before, weakeness from all the explosive bowel expulsions, and stomach and abdomen discomfort, I could barely function. I hopped up on the bed in the chemo suite, snuggled under the warm blankets and settled in. The entire process from blood work to final flush took about five hours, during which I only slept about 30 minutes (chemo suites are very noisy places).

I was happy to get home, rest in my own bed for the rest of the day and by about 9 p.m. I was sawing logs. Of course, when my alarm clock glows at 4 a.m., something in my head thinks it's time to wake up. I tried convincing my body to settle back into the snuggly covers, but to no avail. My mind was churning and I was awake. Ugh.

Since I've never received this chemotherapy combination before, I have no idea what to expect for side effects. The chemo nurse yesterday said Cisplatin tends to produce more nausea and stay in the body longer than Carboplatin. I have a stronger anti-nausea medication that I hope will take care of that nastiness. I guess I'll find out how I react over the next few days - and deal with whatever comes my way.

I also must try to swallow lots of fluids today to flush the drug from my system. Cisplatin can cause kidney damage and therefore the cleansing liquids are vital. I learned yesterday, I'm only getting half of the high-dose Cisplatin at a time, which mandates the 10 to 12 cups of liquids. Since my dose is split between two weeks, I figure if I consume about eight cups of fluid, I should be good. I can't make myself sick trying to fit it all in because that strategy entirely defeats the purpose.

Dr W and I also talked about the ascities expanding my abdominal area. While it's not horrific right now, I visibly look about six months pregnant with my rounded belly. Since I have so much scar tissue and diffferent pockets of fluid in my abdomen, it's hard to use paracentisis to remove an amount necessary to provide good relief. So, if we decide I need to be drained again, he's investigating options with interventional radiology.

With paracentisis, the patient is usually wheeled down to radiology where the technician finds the biggest pocket of fluid, marks the spot with a magic marker X, tells the individual to lay still on the stretcher and sends her back through the hospital to the cancer centre for the procedure. During the transport, loops of bowel float in the fluid, the patient gets bumped or moved and the ideal spot may not be quite so ideal once the (painful) procedure starts.

I asked if perhaps the paracentisis could be done in interventional radiology where the doctor could use the ultrasound and needle(s) at the same time to find various large pockets of fluid and drain them. I think, if paracentesis becomes necessary, that would be my best option. While this isn't usually common practice, Dr. W said he would talk to them about this possibility.

He also talked about putting in another temporary drain; much to my chagrin. But as he pointed out, it would also only capture and drain the fluid from the one area into which the tube would be placed. In addition, we're both hoping the chemo starts to work on drying up the ascities and this entire problem goes away on its own.

So again, I revert to my mantra of one day at a time. But I am hoping to find some bursts of energy so I can get the rest of my Christmas wrapping done. While I was lying in bed not sleeping on Wednesday night, I worried if I experienced complications, I wouldn't be ready for Christmas. Now I feel compelled to get the last gift I've ordered picked up and everything wrapped so I don't have to worry and can focus on managing the side effects and getting better.

I know if I don't get all my preparations for Christmas done, it's not the end of the world, but given that I may not feel well, may not be able to eat much and have so little control over how these festivities will proceed this year, I'd like to be able to control something. Having everything wrapped and ready to go (oh and a list for the ingredients for Christmas breakfast) seems manageable, especially since I have a week. I'll do what I can and rest in between. Sounds like a plan to me.

Tina

Liquid shortage

I couldn't do it. I did not manage to consume 10 to 12 cups of non-caffeinated, non-alcoholic liquids today. I forced myself to swallow between eight and 10, but I am now in a lot of pain, want to throw up (heaven forbid I lose what I have in my system) and can't go to sleep.

My big mistake was probably eating lunch. I dined out with Michael, my mom and sister at Swiss Chalet and heartily enjoyed part of a festive feast. But solid food in my system takes too long to digest and crowded out the room needed for my required fluids.

Before June, I easily swallowed 12 to 16 cups of water, coffee, pop or juice a day. I loved my ice water and would sip it all day long at my desk. This drinking task would have been easy six months ago. But since I started filling with ascities and having all my stomach issues, it's almost a chore to quaff four cups of fluid. How sad; especially when the liquids are needed as part of my treatment.

To top it off, my bowels are acting up tonight. I have yet to find the right balance with the constipation-fighting medication I'm on, so I'm suffering cramping and explosive results requiring frequent jaunts to the bathroom.

It all means I'm not getting the sleep I so desperately need.

I don't know what the nurses will say tomorrow when I confess I didn't meet the mark on my liquid consumption. The information sheet the accompanies the Cisplatin drug sheet specifically indicates I need the 10 to 12 cups of fluid or I need to call the triage nurse at the cancer centre. Apparently, it's that important. I think the Cisplatin can be very toxic and the liquids are necessary to flush it from my body.

Hopefully, my efforts will be close enough and they'll be able to pump me up with extra fluids via my I.V. tomorrow. I'm also praying my blood counts have improved enough to get the chemo.

Then on Friday, when I need to meet those high liquid requirements again, I'll abstain from food. Liquids all the way, baby.

Cross your fingers, say a little prayer or hope for good karma that all proceeds smoothly tomorrow, I get my chemo, it starts to work quickly and I hop on the road to getting better.

Tina

New friends

Yesterday, I attended a wonderful Christmas lunch with some fabulous women. The hostess, I met through the Run for Ovarian Cancer, and she's become a valuable friend since that day, always offering support and prayers as I struggle with my cancer journey.

At lunch yesterday, she offered delicious food, tasty drink, homemade Irish cream and introductions to two of her dear friends. Like me, these two women are ovarian cancer survivors. They make me hopeful because they're both around their five-year remission mark. In the cancer world, getting to five years without a reoccurence is outstanding. Some doctors say if you've been disease-free for five years, you're cured of the cancer.

I'm so happy for them. I'm also thrilled to know women who are keeping this stupid disease at bay and living life cancer-free. It gives me encouragement to keep battling my cancer, especially during tough times, because perhaps the next treatment will work and I too can live in remission for a long(er) period of time.

It was an honour and so much fun to be part of this group of women. I'd like to get to know them all better in the coming years. As you can imagine, with four talkative women at a lunch, conversation flows quickly. I'd like to know more about the cancer stories of these fiesty survivors and get to know all three women better as friends.

You can never have too many good friends.

Tina

Positive vs negative

I'm a human being, and as such, I still have the same petty, stupid, ridiculous emotions everyone else experiences. The problem is, when I act irrational and get aggravated about an everyday slight or action, I feel I'm wasting time. I have a terminal illness, and as such, I shouldn't be using the hours I have left on these negative feelings.

I'm going to use an example from last night (sorry Michael) to demonstrate. His sister and brother-in-law stopped by to visit and show us some wedding photos. They stayed about an hour and a half. During that time, Michael went to pick our daughter up from a friend's, where she was working on a school project. Michael decided to walk to this rendezvous with our dog, missing at least half an hour of the visit. Our dog does need the exercise. Walking is generally a great idea. But it annoyed me he chose to deek out on our company because I thought it was rude.

Anyone who knows me understands I generally turn inward and grow quiet when I'm upset. So conversations were short last night and I went to bed shortly after the company left. I'm better today, the whole incident has blown over in my mind. There's often no sense hashing it out because sometimes I just need time to come to terms with the fact different people have varied priorities.

Like the time when Michael and I were cleaning the house in preparation for a dinner party and he thought it was a good time to defragment the computer. No one would see it. It didn't need to be done that minute. Yet it took up time I thought should be spent eliminating the grime from the visible areas of our house. Argh!

Since I've been so sick, these little disagreements - that are a normal and healthy part of life - bother me. I feel they waste valuable time and good, emotional energy between me and the people in my life, so I shouldn't feel this way. But getting cancer didn't eliminate the irrational, emotional side of my brain that doesn't always make sense. It also didn't make the world all sunshine and rainbows where people always see eye-to-eye and get along. So I will continue to struggle with experiencing normal feelings and the sense they're chipping away at precious time.

When you feel time may be limited, it also hard to come to terms with and accept relationships and feelings can't always be lovey-dovey, positive, sweet, tender and co-operative. I want (and feel) all of it should be good, making cherished memories, having valuable experiences. But people are people. We have good and bad days. All our emotions and reactions aren't positive, nor are they the same as those around us. Differences make us special, unique and interesting to one another, but that means we aren't always going to agree.

On the positive side, cancer allows me to let go of more slights, disagreements and negative emotions than I have in the past. I try to focus on the good in others. I value my friendships and relationships more. I also try to determine the root of an action before reacting to it. There's a lot of stress with an illness, which can often be the source. I'm also far more contemplative than I was in the past, giving people the benefit of the doubt and delving into the personal reasons for words or actions. Time is short and holding onto stupid grievances is a waste of time and energy.

As I told a friend the other day, it's important to surround yourself with people who give you energy and happiness, and eliminate (or at least cut back) on the time you spend with those who suck your spirit. There's way too much negative drama in some people's lives, so I try to avoid it. It does me no good.

Surround yourself with life-sustaining people because they're the ones who fill your energy reservoirs. We can all use lots of good, powerful energy in our lives.

Tina

Blood Friday = Energetic Sunday

I whipped up French toast for breakfast, completed some Christmas shopping, wiped up the bathroom, baked some banana bread (with my beautiful daughter), scrubbed the kitchen sinks and stove, perused cookbooks and created a Christmas baking list, and picked up various items around the house. All before the London Knights' game aired at 2 p.m.

Yesterday, energetic Tina was back. The benefits from the blood transfusion on Friday finally hit, and I stopped dragging my butt around the house. While my speed isn't up to typical pace, I'm not hobbling along like I'm 80 years old. (That's never good when you get in crowds who are Christmas shopping and are racing along the aisles. For the record, I get so aggravated with those people and now I'm one! Sheesh.)

I didn't even feel the overwhelming urge for a nap yesterday. During the past week or so, I've often hit a point when exhaustion made me at least lay back and close my eyes; even if I couldn't sleep. This is a refreshing change.

I know it's not going to last, but I'm going to enjoy the extra energy while I can. I get chemotherapy on Thursday, which will knock me backwards physically. But I need the cancer-killing chemical cocktail because the ascities is starting to be a big, round, uncomfortable problem again. I look five months pregnant with my distended and rolly belly. We need to release the ninjas to divert the tumours from making this annoying fluid.

So, I'm going to enjoy the coming three days, accomplish as much as I can to prepare for Christmas, squeeze in some social time, and stock up on the much-needed liquids and other supplies I'll need for my next round of chemotherapy. Then I can roll up my sleeve on Thursday afternoon knowing I can concentrate on getting through whatever side effects the next dose doles out. Since the treatment regime changed, I have no idea what to expect, but I'll just take it one day at a time.

Here's to enjoying the next three days.
Tina

Bloody Friday

This morning, I get life-boosting blood pumped into my veins. The red liquid will give my body the cells it needs to feel better and recover for chemotherapy next week.

I've given blood many times in the past and always felt good about helping someone who needed this red substance, of which I had an abundance. I was happy to roll up my sleeve and lay on the cot for a little while, knowing my blood could help an accident victim, a surgery patient or anyone else who needed it. Of course, the cookies doled out by the Canadian Blood Services volunteers afterwards were an added bonus.

I needed two pints of blood during my hysterectomy and bilateral salpingo oopherectomy surgery (the one where they removed all my womanly parts and the cancer) in 2009. But I was, thankfully, deep asleep during that whole procedure.

This time I'll be awake, watching the red liquid flow into my veins. Someone else's red liquid. To tell you the truth, while the concept of blood transfusions are brilliant because of all the good they do, the idea of someone else's blood being pumped into me freaks me out just a little. I know it's screened and cross matched to my blood type to avoid any allergic reaction. It's also very carefully checked for all diseases and contaminents. But it's just the whole idea of it being someone else's blood.

Of course, I'm being an idiot, because I get chemotherapy pumped into my body, which are toxic chemicals that can definitely cause damage to my organs and wreak havoc on my systems. I take handfuls of pills to stave off nausea, vomiting and constipation, and they also have potential side effects. So I'm being squeamish about the blood, which is designed to provide only good after-effects. I need to suck it up (like a vampire) and get over my qualms about the blood once belonging to someone else.

I'll go roll up my sleeve this morning and gratefully accept the blood a generous soul donated. I whisper a thank you to the anonymous person who took the time to give.

Tina

Food and drink

We take the ability to eat and drink for granted. Sipping on our fragrant morning beverage, noshing on a decadent piece of cake, licking our fingers as some of the ingredients of our noon-time sandwich come slipping out, guzzling down the refreshing water to quench our thirst or slicing into a perfectly cooked piece of tender chicken. Mmmmm.

Over the past few months, when sustenence often refused to remain in my body, I've gained a new appreciation for food and drink. I value, more than ever, the energy-giving properties it provides. I also love the taste, texture and social aspects of dining or sharing a coffee.

I managed to retain most of what I ate and drank yesterday, and I feel better today. The pounding headache is gone and I have some energy. I will still need to rest often and be very selective with my activities, but at least I don't feel like laying in bed, lounging on my couch or soaking in the hot tub are my only viable options.

My home care nurse visited me last night and I complained about my high pulse (102 bpm). She said my blood is trying to pump quicker to give me the oxygen it needs. Since my hemoglobin is so low, my oxygen supply is low, that makes me tired and short of breath. She said the transfusion tomorrow should really help me feel better. I look forward to that.

Tina

I vant your blood

If you're one of those generous people who roll up their sleeves and donate blood: thank you. If you're type O positive, an extra merci beaucoup to you. I'm grateful because I need a blood transfusion on Friday to bring my hemoglobin and platelets up to an acceptable level. They're so low, my chemo must be postponed a week.

My appointments at the cancer clinic did not go as I'd hoped yesterday. In fact, the treatment train went careening of its track. My chemo and its timing changed, and I also have new drugs to help prevent vomiting and promote bowel movements. I know the changes are probably for the best, but I was so hoping to release the next wave of ninjas, so I'm disappointed. Now they have to continue training for another week before attacking the tumours.

The first minor roadblock I encountered was during my blood draw. Both lumens in my PICC line were clogged and needed a special drug to clear them. So my five-minute stop at the chemo suite to give blood turned into an hour-long stay. But they're both running free and clear now so they'll be ready for both my blood transfusion and chemo.

During my appointment with Dr. W, he suggested we switch the Carboplatin chemotherapy to Cisplatin. So I'll be getting Cisplatin and Gemcitabine on both weeks one and two, with week three as a treatment vacation. Apparently these two drugs have a synergistic effect - they work well together - so he's recommending their combined infusion both weeks. As well, splitting the dose over two weeks would decrease the potential side effects of kidney and inner ear damage, and increased nausea.

The drug sheet for Cisplatin says hydration is very important and I must drink 10 to 12 one-cup servings of fluid (water, broth, clear soup, clear juice, etc.) the day before and after treatment. In fact, if I can't drink this much fluid, I have to call my nurse. It's that important.

Which is why we have to get this vomiting under control. I haven't been keeping food nor fluids down, and as a result, I feel terrible. My mouth is sticky, my lips are dry and I have a terrible headache. Between being dehydrated and my low blood counts, I am weak, lethargic, shaky and generally feel crappy.

So Dr. W prescribed more Dexamethasone and a drug called Haldol to help control the nausea and vomiting. I took my first doses about 6:30 p.m., but then I vomited four times between midnight and 6 a.m. Hopefully, my body absorbed them before I went on my puking rampage, but there's no guarantee.

I took them again this morning and. knock wood, so far all the Gatorade, water and soup I've consumed has stayed put in my stomach. So hopefully these new drugs are starting to work.

Dr. W also prescribed, Lactulose, a synthetic, non-digestible sugar used to treat chronic constipation. It's a sickly sweet syrup, but if it works, I'm all for it.

I'm so bummed my blood counts aren't cooperating on my very first treatment! This does not bode well for the future. My platelets were 91 (normal is 150 or higher, but may drop as low as 75 during chemotherapy without serious harm). I have unexplained giant purple bruises on my body, blood in my mucous and tiny red and purple dots on my skin. All signs of low platlets.

My hemoglobin was 76. Normal is between 120 and 130, but can drop as low as 80 without serious harm. I'm below 80! Those with low hemoglobin are considered anemic. According to the London Regional Cancer Program website, anemia can cause difficulty concentrating, tiredness, feeling dizzy, headaches, shortness of breath with very little activity, sensitivity to cold/feeling very cold, pale skin, less interest in social pleasure, and feeling down or irritable. Check on all those symptoms.

Dr. W said we may consider using a drug called Eprex to help prevent anemia if I continue to have problems in the future. But of course, using it comes with its own set of precautions. I'll cross that bridge if and when I get to it.

To top it off, my white blood cells are 2.5 (normal is 4.5 to 10) and my neutrophils are 1.0 (normal is 2.5 to 7.5). So my blood work sucks all around. In the meantime, the blood transfusion is the way to boost my hemoglobin and platelets, help me feel better and prepare my body for chemo next Thursday.

I hate this. I hate feeling sick and weak. I hate curling up in a ball on my bed and disengaging from the world, but I feel so terrible, that's all I want to do. I'm so disappointed my treatment is delayed. I'm frustrated because I'm filling with ascities again. I feel so disheartened right now.

Hopefully the blood transfusion helps. I hate being like this.

Tina

Presenting the list

Hi ho, hi ho
It's off to the doc's I go
Today I present
How things went
With the che-e-e-e-mo

This morning, I have appointments at the cancer centre to give blood and see Dr. W. My blood tests will verify if all my levels and cells are within the acceptable range for me to have chemo again on Thursday. I know they need to check my platelets to make sure my blood is clotting properly because I experienced nose bleeds, and unexplained bruising and red marks late last week. 

The bruising is just one of the experiences I'll need to recall when I'm with the doc and his nurse, B, this morning. Some of the side effects I've had over the last three weeks include:

• Nausea, stomach pain
• Tiredness
• Weakness/shaky
• Pain under right breast (like gallstones)
• Flushed cheeks
• Paleness
• Flu-like symptoms (day 3 post Carbo/Gemcitabine treatment) - aches, restless, nauseous, headache, flushed, muscles
• Abdominal cramping/difficulty with bowel movements
• Acne
• Blood pressure on high side
• Bloody mucous in nose (starting four days after Gemcitabine treatment)
• Unexplained bruises and red spots
• Headaches, stiff neck
• Irritable, sensitive to sound (everything is amplified and loud sounds hurt my ears/head)
• Jabbing, lower abdominal pains
• Vomiting up about 25 per cent of what I eat and drink when I take Dexamethasone
• Vomiting up at least 75 per cent of what I eat and drink when I am off Dexamethasone

The list is long, but gives a fairly clear picture of my life over the past three weeks. I have no idea if this is going to be my typical reaction to this chemotherapy combination. I suspect my pre-existing stomach problems, the after-effects of my surgery and the overbearing presence of some of my tumours are contributing to or exacerbating the severity of some of these side effects.

I have no idea what action Dr. W will take based on my list of complaints. I don't know how or if he can help me. All I can do is present my reality to him and rely on his medical expertise and advice. Hopefully, he can find ways to alleviate some of the symptoms and make my life a little easier.

Regardless, the magic words I want to hear are, "You're all set to get chemo again on Thursday."

Let's release the next wave of ninjas.

Tina

Perspective

I know my blogs haven't been very cheery lately because of how ill I've been feeling. While the writing is honest and part of documenting my journey with this beast called cancer, it gets tiresome to be negative all the time. With Christmas drawing near, I thought I'd switch my thoughts around on this Monday morning and remember things for which I'm thankful.

This list isn't exhaustive, nor is it in any particular order:

1. My wonderful and handsome husband who rubs my back, does extra chores around the house, lets me rest and loves me unconditionally.  
2. My kids, who must be scared and confused watching their mom be so sick, and yet do their best to help me and understand.
3. Family and friends, near and far, with all their support - calls, food, emails, visits, massages, prayers, etc. You guys rock.
4. Christmas dinner at my Aunt Carol and Uncle Vince's on Saturday - Yummy turkey, mashed potatoes, gravy, dressing, corn, good company, lots of hugs and family. I felt pretty pathetic and lethargic, but my entire family was understanding and supportive. It was so good to see everyone after such a long time too.
5. Roast beef dinner and playing cards with good friends last night - I'm proud to say I cooked a roast exactly the way I wanted, with an herbed crust and pink in the middle. It was delicious. And it was awesome to share it and then play cards with Di and Pete. (The awesome massage Di gave me helped enormously too.)
6. I get chemo on Thursday. Now, many people would lament the arrival of an upcoming treatment because it means side effects and misery. But I want this cancer to go away and to get some semblance of my body/stomach back, so I need to shrink these tumours. It's sad I'm looking forward to Thursday. I'm hoping this next round of chemo means relief, so I'll be able to enjoy Christmas.
7. I'm grateful I can go in my hot tub. I love it, and the warm, pulsating waters help ease the soreness in my body. Theoretically, it should also keep my gastrointestinal systems moving and increase healing circulation.
8. And speaking of my GI tract, my bowel movements have become more regular over the past couple of days. I'm thankful for the cleansing. The discontinuation of the steroids probably helps because they can be constipating little buggers. Even though I'll get more Dexamethasone again on Thursday with chemo, at least things will be moving as they should before I start the cycle again. (Yup, I'm talking about being thankful for poop. Little things can become so significant sometimes.)
9. My side effects with this chemo haven't included (at least not so far): skunky mouth, intense bone aches, the deep dark well of misery (aka the dementors), tingling in the hands and feet, hair loss and chemo brain. Some may appear on subsequent treatments, but they haven't been present so far.
10. Feeling good - It may be an hour or a day, but I have segments of time when I actually feel pretty good. I'm hoping those times lengthen and become more common. For now, I'm thankful when I can sit and think, "Yup, I feel okay."

I know, except for the first few, it's not a typical list, but it's reality for me today.

Even though I desperately wish my health would improve, I'm sometimes jolted back to reality when I hear about those who are worse off than I. This morning, I learned about a woman who has stage IV lung cancer with horrible options and a bad prognosis. Hearing her news made me stop and think my situation could be worse. It also made me remember my health does have great potential to improve.

It's so easy for me to get caught up in my own misery and be impatient though. I'm living it; surrounded by the sensations 24/7. I'm only human. I get tired, scared and worn down. But, I have to remember it's not all bad. That's why thinking about that woman and creating my thankful list this morning was so important. There are good things in my life and I need to focus on them.

I know I ask this regularly, but I think it's important: Take a minute today and remember three unique things in your life for which you're especially thankful.

Tina

Sliver of patience

I'm now on recovery week from chemotherapy, with treatment starting again next Thursday. I'm happy to have the time to clear up some of the small side effects I've experienced and gear up for the next round of treatment.

Part of me wants more treatment now to shock the tumours and beat them into submission more quickly. This is where patience is paramount because I know I need to rest and recover so my body can do its job throughout all the treatments. It needs to be strong to give the ninjas the best environment to continually attack the cancer.

I've been taking advantage of my good days; those when I'm feeling energetic. This week I did some Christmas shopping, wrapping, organizing and planning. I feel accomplished I got so much done. But I'm now feeling the effects of all that activity. I woke with a headache and a lethargic feeling. As a result, I'll probably have to scale back the to-do list I planned for today. I have to keep telling myself I still have lots of time to get all those jobs done.

I know the extra week of steroids contributed to my energy burst. They stimulated my mind, helped me eat and made me feel much better. But my prescription for those little white pills ended on Wednesday. Yesterday afternoon, right on cue, my stomach hurt from eating lunch. And Bitchy Tina is hovering right around the edges of my personality, taking exception to noises, comments and just about everything. She's certainly no pleasure to be around; not even for me. My poor family bears the brunt of this ugliness.

I also continue to be plagued by slow bowels. I pleadingly coax poops from my system every couple of days with all the medications and a recommended laxative, but I'm no where near as regular as I should/used to be. So, with the ability to eat, but no system cleansing movements, I eventually encounter a lack of space in my digestive tract. And so, once again, I've had a few vomiting issues.

On a positive note, my belly is still relatively soft and not extremely distended by ascities. And the warm, swirling waters of the hot tub help ease my aching muscles. Thank God for the small miracles.

A few other minor side effects have made an appearance over the past week. I've started getting blood in my nose and when I scrape or cut myself, the blood doesn't clot as quickly. I've also had a few mysterious bruises and marks appear on my body over the past few days. I've also noticed the appearance of little red dots around my body. The blood vessels in my face also break more easily, especially when I've been vomiting, giving me a flush appearance.

I'm guessing my red blood cells aren't quite up to snuff, which is a common side effect of the chemotherapy. Hopefully, they'll rejeuvenate before my appointment with Dr. W next Tuesday, so he can give me the green light for treatment on Thursday. The last thing I want is a delay.

It's only the beginning of official treatment, but I'm feeling the effects of its ups and downs more quickly. I know I'm complaining again, but it's so hard to feel good, be hopeful and then get plunged back down into the gunkiness.

The emotional roller coaster ride also makes me feel a bit like Dr. Jekyll and Mr. Hyde. I want treatment to kill the cancer, but I don't want to go through the side effects. I love the steroids because they make me feel well and help me eat, yet I'm scared of them and what they may do to my body. I love to eat, but when my bowels don't work, I hate throwing up. I get nausea, vomiting and stomach pain when I don't take the steroids. I feel energetic. I feel tired. I am happy and pleasant. I'm grumpy and impossible. Argh!

I think I need to dig a little deeper in my bag of tricks to find a sliver of patience for today. I'm sure a few deep breaths and repeating my "one day at a time" mantra will come in handy.

Tina

Introspection and improvement

When on any journey in life, it's important to stop every once in a while and take a status check: Where are you in life? What's going well? What isn't so hot? How can you change the parts you don't like? Where do you want to go from here?

But it's really easy to get caught up in work, family responsibilities, activities, chaos and the lives of others (because face it, some people have WAY more drama in their lives than can possibly be good and it's so easy to get sucked into it). But if you don't take the time to examine you, how can you possibly be getting the most out of your life?

While I usually completed this introspection a couple times a year before my cancer diagnosis - especially when I was feeling unsatisfied with some portion of my life - I find I do it more now. My realistically shorter lifeline gives me a smack-in-the-face realization there's only so much time, and I can't continually put things off until tomorrow. But if we all think about it, there's no time guarantee for any of us.

Self-introspection is hard because it makes us examine aspects of ourselves we may not like and face realities we'd rather keep buried. If we're really serious about the exercise, it also forces us to make changes in our lives.

We can't keep doing the same things and expecting different results.

My blog helps me sort out many of these thoughts and issues. To talk to all of you, I have to figure out what I'm going through. But I also see an awesome social worker, who raises different questions and prompts me to think about siutations in new ways. I generally walk out of her office with a couple of new things to comtemplate. Sometimes these ideas make me look at my world slightly differently, and other times they prompt change and action.

But in the end, it's all good. These exercises help me make those very important steps forward. And one of the best things about working with a therapist is the work can - and should be - all about you. It's your issues and how you can change things in your life. It's about figuring out what will make you better, happier, more fulfilled or healed.

A recurring theme over my last couple of sessions has been trying to live my life to the fullest against the struggle of feeling sick for so long, and therefore feeling stagnant. I know I've touched on that topic in my blog a few times. It's hard being hopeful, planning and enjoying events when it's a struggle to get up and put on a brave face every day. Yet, I feel I'm wasting time. So I struggle with that paradox.

I'm also trying to deal with the notion of slipping in and out of my normal life. I have a life where I'm busy with work, activities, friends and engagements, from which I disappear for long stretches of time about once a year. That gets a bit harder each time because of the lack of social contact a normal life gives me. With each bout with cancer, I also find I have less time and energy to be social and engaging, which makes me feel guilty I'm not as present with the lives of my family and friends. The entire experience also leaves me more isolated.

But please don't take my last comments as throwing shadow on my amazing support system. My village is amazing and I am so lucky so many wonderful people choose to be part of it. That means there are lots of different people to step in, hold my hand, offer words of comfort and ensure I'm doing okay. God bless you all.

As you can tell from my rambling writing, I still have some thoughts to sort out from my social worker session yesterday; but I'm comforted by the small forward momentum in my brain. I like working on myself to make me better and to improve my life. We've only got one to live, so we need to make the most of it.

Tina

Oh how I've missed you

Yesterday, I was finally given the green light to slip my poor, aching body back into the warm, swirling waters of my hot tub. Given all the incision, drain, puncture and needle sites on my abdomen are closed, I can once again take advantage of the pulsating and therapeutic jets on my muscles.

It felt SO good. "Oh, my little hot tub, how I've missed you."

Since my pigtail was inserted on Aug. 2, I've been banned from submerging my body in water. So there's been no swimming, baths or hot tubs for me over the past four months. While that may not be a big deal to some, the limitations made me sad and a bit cranky. Now, I do need to ensure my PICC line stays dry to prevent infection, but I have a thick, plastic sleeve that's doing the job perfectly fine. I've also ordered a special cover off the Internet that's supposed to allow me to swim too.

While I need to initially limit my time, even a 20 minute soak twice yesterday untangled knots in my back and shoulders. I felt more relaxed. I slept better. And I'm hoping the jets will keep those stomach and bowel muscles stimulated and encouraged to keep working.

I've always been a water person and so I'm back in my element. I'm looking forward to my soaks today. Ah!

Tina

3 a.m.

A person should not wake up for the day at 3 a.m. The world is dark and the house is quiet. Typically, when I wake at such an early hour, I mentally cheer at all the additional minutes of sleep before my alarm clock jolts me to reality.

But, as you guessed, I've been awake since 3 this morning. Mind you, I was curled beneath my cozy, flannel sheets, exhaustedly settling in last night at 9 p.m. Yet, even with my early bedtime, I needed and expected to get more than five hours of body-healing, mind clearing, restful sleep.

Oh sure, I tried to coax my body into returning to restful slumber, but just before 5 a.m., I gave it up and climbed out of bed. Now I'm sipping a tea, noshing on a muffin and contemplating activities for the day. I have lots I could do, but I have to balance those chores out with the rest my body so badly needs to recover from chemo on Thursday. A little work, a little reading sounds just about right.

I'm also already planning the optimal time to nap. I'm sure I'll be ready to plunk my head back on the pillow mid-morning; shortly after the kids go to school.

As a cancer patient undergoing treatment, I need to let my body lead and go with the flow. In many ways, we should all follow that same advice, listening to our bodies more and being kinder to it when it protests. Believe me, this great advice is far harder to follow some days than others.

Tina

Brutal

Horrifying
Painful
Less than productive
Awful
Rooting
Torture

Those are a few descriptions I'd use to describe my paracentisis yesterday. It was probably my seventh time having this procedure, which involves sticking a giant needle in my abdomen to draw out excess ascities. This was by far the worst. It was also the least productive with only 1L of the liquid siphoning off.

Dr. W asked a colleague step in because he had no time in his schedule. I remembered this doctor when he performed this procedure on me a couple of years ago and recalled uncomfortable results. The little, optimistic hope I had for a smooth and relatively painless experience was shattered shortly after the process started.

I'm not going into all the gory details, but suffice to say, this doc made me cry. I don't usually produce waterworks during medical procedures. I moan, breathe deeply, grunt and even produce some little wails, but I'm generally pretty stoic..

I staved most of the tears until everyone had left the room, but some sprang to my eyes during the needle exploration in my abdomen. It's tip scraped my bowel a few times, and the entire process felt as though the doc were on a reckless treasure hunt. When I was alone, I broke down from the pain and hideousness of it all.
 
In fact, I'm still sore today and the nurse who watched the procedure (and was flinching) told me I'd probably be bruised for the next few days. Luckily, the chemo seems to be working and fluid production decreasing, so I shouldn't need paracentisis again.

On a positive note, my blood pressure and pulse both dropped, and I can see a decrease in the roundness of my abdomen. But I'm not sure it was worth it.

Tina

Slide into the electric

Tzzzzzzdt, tzzzzzzdt.

That's what my brain felt like last night as I tried to go to sleep. An electric sensation gripped my brain from the steroids and my thoughts were traveling a million miles a minute. I laid in the dark, waiting for the lorazepam to kick it, willing my body and mind to calm down. I was singing songs, tapping my fingertips on Michael's shoulder and making him laugh at the absurdity, writing a blog, thinking about Christmas shopping, dreaming up meals to eat, etc. It was a bit chaotic.

I tried deep breathing, imagery and prayer; but I'd focus on that specific mind-calming activity for about 60 seconds before my mind cavorted to another oh-so-important topic.

Yup, the hexagonal, white steroids are doing their job inside me. Besides the few hours of sleep I lost, I'm thrilled to report I kept dinner and breakfast down, I'm eagerly anticipating my next meal, my stomach doesn't ache, I have enthusiasm for the day and the energy to actually accomplish something. I've been up since about 5 a.m. checking online specials, doing some Christmas shopping and creating items for my to-do list. I like this Tina because it's far closer to the real me - and I will take advantage of it as long as I can.

The only side effect from the Gemcitabine so far (and it IS still very early) is some abdominal pain. I'm attributing it to the ninjas completing their dueling job with the cancer cells. Go my stealthy, black, warriors.

                                    Check out my cute little ninja. He was a gift from my friend, Laura.

So, while the steroid high lasts, I'll enjoy life and sing. Speaking of singing, now you too can reveal in the awesomeness of the Team Tina Twinkle Toes as they performed Don't Stop Believing at Syncapalooza. So amazing.

(But because I'm not technically challenged enough to embed the video in the blog, here's the link.)


Enjoy!
Tina

30 min + 4 hours

At 7:45 a.m., the cancer centre is pretty calm and quiet, which is exactly how I like it. I thought, I'd be in, get my Gemcitabine chemo and be on my way before the place filled up.

I checked in and filled out my "how ya doin'?" questionnaire that now accompanies every chemo treatment. On it, I mentioned I'm upchucking every day, can't keep food down and am blowing up with ascities (not in those exact words, of course). My complaints instigated action by my chemo nurse.

Usually, I'd only need blood tests to ensure my red and white blood cells counts were high enough to get my next dose of chemo; but she drew extra vials to check my electrolytes, which could be out of whack from all the vomiting. She also called Dr. W, who visited me in the chemo suite.

After assessing my situation, he ordered a series of abdominal x-rays to rule out a obstructed bowel. "Oh shit," I thought, "just what I need." (And yes, pun intended.) Thank God, no obstruction!

To help me eat, Dr W prescribed a week's worth of Dexamethasone. Now, you know my love/hate relationship with this steroid, but I really miss eating and I'm sure he'll watch me carefully. In fact, Dr. W wants to see me again in a week. I'm also getting ascities drained via paracentisis tomorrow morning. The big needle in the abdomen to remove the fluid is an awful procedure, but it provides such relief. Hopefully, this will be the last time before the chemo starts to work on drying it up.

At one point during the morning, Dr W talked about the possibility of postponing today's chemo treatment. He asked me how I felt about that possibility. My reaction in my head was, "Are you freaking kidding me? Give me the chemo. Let's kill these bastards." To him, I said, "I'd like to get the chemo."

With the clear x-rays, I finally started getting the Gemcitabine about 2-1/2 hours after I checked in. After a quick infusion, Michael and I walked out of the hospital after noon.

With a Dexamethasone on board, I got ambitious with lunch, happily munching down on loaded spinach salad and a tuna salad croissant. But I didn't really give the little white pill enough time to work and I saw it all again mid afternoon. Ever the trooper (or glutton for punishment), I tried again at dinner with a delicious spinach and cheese ravioli in blush sauce. Two hours later, it's still staying down. Fingers crossed, it'll stay there.

Tonight, I feel pretty good. I have no idea what the next few days will bring in terms of side effects from the Gemcitabine alone, but I'll deal with them as they come because this treatment is what I need. I'm thankful for that.

Tina

First to me

They may have placed second in the competition, but they're first in my heart.

Every year, London Life holds a fundraising "concert" called Syncapalooza. This extravaganza involves individuals dressing up (usually crazily), and lip syncing and dancing (and other funny anctics) to a song; much to the delight of the ticket-buying audience. All to raise money for the United Way. It's always fun, but this year it made me cry.

A bunch of my friends put together a performance in my honour, singing and dancing to Don't Stop Believing. They sported their Team Tina yellow t-shirts, hammed it up, played air guitar and shook their patooties around the stage. I loved it!

Now I know many of those who were up on that stage wouldn't normally participate in Syncapalooza, but they did it for me. How amazing is that? I get chills just thinking about all the support and love I have. This wonderful performance reinforced that for me. I know it made me and Michael cry, and I saw a few other tears as well.

Check out the photo from after the performance with me sitting proudly in the middle.

You guys were amazing and in my books you earned first place. Thank you from the bottom of my heart for the outpouring of love (and all the great hugs).

Tina

Climbing up

I'm slowly making my way back up from the basement of chemo. I started feeling better yesterday and hopefully that bodes well for improvement again today. Hopefully tomorrow's treatment doesn't kick me back down the stairs. I'm looking forward to being semi-productive and a little more social.

As a side note, I obviously miss eating because I dreamt about a bacon cheeseburger last night. Sheesh.

Tina

Ka-chunk

The laces slipped through my tenuous grasp and the shoes clattered noisily on the floor yesterday. I felt awful - shaky, stiff and sore, with flu-like symptoms and a wicked headache. Yup, the other shoe dropped.

Yesterday morning, I had a follow-up appointment with the surgeon who supervised my care during my stint in the hospital and it was all I could do not to cry while waiting in the cancer centre. I was that uncomfortable. When I did see him, it was for five minutes. He said the appointment was to ensure I didn't fall through the health care cracks and assure me I can see him again, if need be. Great. Thanks. Then I went home to bed, where I spent most of the day.

I'm sure I'm feeling so crappy because I'm getting dehydrated. I can't drink much and my body isn't really able to process much food. Even though I had a Boost in the morning, some soup at lunch, a Gatorade-type drink throughout the day and an Ensure at night, I threw it all up last night. I'm quaffing back the anti-nausea medication, but they don't cut it like the steroids. But I'm afraid to take the steroids (and my prescription is done anyway). As well, the ascities is building and pressing on my abdomen, which allows little movement in my poor tummy.

Things should improve once the chemo attacks the tumours and the ascities, but I'm so damn tired of waiting to feel better. Hurry up already! Of course, I'll mention all these happenings to Dr. W when I see him next. He may have some great idea for making things easier on me in the meantime.

If this round of chemo is any indication (and there's no guarantee it is because of all my other complications), days 3 and 4 seem to be the worst ones for side effects. I feel better today with only a headache, stiff neck and back, and bloating pain from the ascities as my main complaints. My goal today is to rehydrate myself with Gatorade and supplements, and not worry so much about eating. As much as I love it, food is not my friend right now.

Then on Thursday, I'll go get another cancer-blasting dose of chemo. Hopefully, each one will make me feel better and move me towards my goal of beating this stupid disease.

Tina

Footware slip

Yesterday, the shoe I'd hoped wouldn't drop slipped from my grasp and I'm now using my fingertips to hold onto the laces. And so far, today isn't looking very good either.

Sunday morning started fine, with a cheery mood, a nice cup of coffee and a piece of peanut butter toast (the crunchy kind so you have lots of tactile excitement for the tastebuds). I read my book and lounged around, showered and dressed.

We went out to Costco - a place I HATE on Sundays because of the throngs of crazy people - to get the new Looneyspoons Collection cookbook signed by the authors. It was there the withdrawal from the steroids kicked in and I became extremely grumpy. My bowels were also working with the help-me-poop medication to cause cramping, heat flashes and gaseous movement, and nausea danced around my belly.

Then last night, I made the mistake of eating dinner. Without the steroids helping the nausea, dinner revisted me about an hour after consumption. And then I threw up again during the night. I'm afraid to eat or drink this morning, and I've got a pretty orange anti-nausea medication on board to try to help settle my out-of-sorts tummy. But I know I need the nutrients and especially the hydration, so I will have to try a supplement or something shortly.

While these side effects aren't as bad as previous chemo treatments, I doubt I'm done yet. They do make me want to crawl up in a hole, aka a nice soft bed, somewhere and ride them out. I'm not good company nor do I make friendly conversation. So forgive me if I'm slow getting back to you or out-of-sorts. I just have to take it one day at a time and do the best I can.

Tina

Waiting for the shoe to drop

I'm trying not to be pessimistic, but I honestly find it hard to believe these side effects are the biggest, baddest ones to be doled out by this chemotherapy combination. Quite honestly, they're inconvenient but not onerous.

I fluctate between having good energy, initiative and racing ideas to being lethargically tired and unable to concentrate beyond my bed and a book. I've tried to nap during the down times, but I believe the steroids coursing through my system stymie the mind-sinking phenomenon necessary to drift into dreamland. Luckily, I took my last dose of the small, hexagonal white pills last night, so perhaps my next nap time will be more productive.

Yet, the bonus of the anti-nausea medications, Dexamethasone and Ondansetron, is the quelling of my nauseous stomach, which allows me to eat. I can enjoy small meals, reaping the nutritional and social aspects of partaking in the sharing of food. Now, I still reply on nutritional supplements (and I'm thankful to the generous friend who supplied me with some) for some of the meals I can't quite stomach and to provide me with the balanced nutrition I need and may not necessarily get with the foods I crave.

Ironically these same little pills that encourage me to ingest food into my body are backing up my bowels, despite regular quaffing of the stool softening and poop-inducing (nice technical term, eh?) medications of Colasce and Sennokot. I've got lots of uncomfortable cramping and movement in the bowel region, but no relief.

And the steroids slightly veered me towards to the path of Bitchy Tina last night. Maybe it was tiredness or lack of a good bowel movement, but I felt more irritated than normal by dinner time (a meal, I incidently skipped).

Other than those semi-mild side effects mentioned above, I've experienced flushed cheeks, restless (but not painful legs), dull eyes with small pupils, a minor, gall-bladder type pain under my right breast and possibly, a small dulling of my tastebuds. Of course, I also have the discomfort of filling up with ascities, which luckily isn't major right now.

But based on my previous, horrible experience with chemo, I'm waiting for the other shoe to drop. Day three (which would be today) used to drop me into a deep, dark well of depression, bone pain and an out-of-body experience. Even thought Dr. W said the side effects tend to appear right after treatment, and both he and the chemo nurse said they were generally pretty mild, I'm afraid to believe it. I don't want to trust this is the worst and then be sucked into the hellish vortex. That's why I'm keeping an open mind, taking small trips, making minimal plans and sticking pretty close to home over the next few days.

But if this is the worst the Carbo/Gemcitibine chemo combination is going to throw at me - with positive, cancer-shrinking results - I'll be thrilled. So keep working my little, black ninjas with the same stealth and pain-free efficiency you've employed so far. I'll send in some Gemcitibine reinforcements on Thursday.

From where I sit right now, the day lays before us with promise. We should all do what we can to get out and enjoy this beautiful Sunday. It's a good day to be alive.

Tina

1/12

The first batallion of lethal, black ninjas got the green light yesterday and were infused into my body. They're sneaky warriors, hiding in the two bags of clear chemotherapy fluid. Now they're lurking in the shadows in my abdomen, of which I'm sure there's many, and sneaking up on those rotten tumours to eradicate them. I hope this first army of super soldiers is large and strong enough to distract the cancer enough so it doesn't have time to produce ascities.

Yesterday's infusion went surprising well. In comparison to the six-hour days I used to endure, my approximately three hours at the cancer centre - waiting, paperwork, set up, infusion, etc. - felt short and sweet.

With the carboplatin/paclitaxel combo I previously received, the paxiltaxol took three to four hours alone to drip into the IV. Then I had to have additional drugs to prevent reactions to it. I got Dexamethasone, Rininidine and Benadryl via IV before the chemo drugs were even started. And because I had an adverse reaction to the taxol on the first dose, the rate of infusion was slowed too. When I had this chemo combination, it was necessary to pack a lunch, drinks, snacks, cards, book and patience.

But with the Carboplatin/Gemcitibine chemo I received yesterday, the IV consisted of saline, Gemcitibine for 30 minutes, saline, Carboplatin for 1 hour, saline and done.

It was also easier because I have a PICC line. No rooting around for veins to cooperate. And because I've had lots of trouble drinking lately, I'm sure I'm dehydrated, which shrinks veins more. So if the nurse would have had to thread a vein for the chemo, I'm sure it would have been an ordeal and involved multiple stabs.

In addition, when the patient has a PICC line, the Gemcitibine doesn't have to be mixed with saline to lessen it's harshness on the veins. So I got the straight drug, which was quicken infusion too.

It was also much quicker to have this treatment done in London instead of Hamilton, which is an 1-1/2 hour drive away. We live a short 20-minute drive to the London cancer centre, so it's in for the chemo and out to do something else with the rest of the day. Not that I really did anything too exciting because I was tired. I laid down but unable to sleep because I was wired from the steroids. Weary but wired seems to be the main side effect so far.

It's ironic, but last night I told Michael I felt better than I had in about a week. I don't know if it's the steroids calming the nausea and making eating a bit easier or the removal of the drainage tube, which I seriously think was starting to make me feel really bad. I'd also like to think the chemotherapy is already starting to work, but that's optimistically unrealistic.

Unfortunately, my belly is swelling with fluid accumulation. It's quite visible now and could get to be a problem. But hopefully, those ninjas will work really quickly and only one (or none) paracentisis draining will be necessary. Of course, I'll keep an eye on it, because it's gets extemely uncomfortable and is hard to hide.

In those first few seconds upon waking this morning, I felt great: No pain or discomfort. But once my body fully awoke, I noticed a slight headache and some minor stomach pain. I also still feel tired despite a decent night's sleep. But if that's the extent of my side effects right now, I'm rocking. But I suspect, I'll feel some more as the day(s) truck on.

Since this is an entirely new chemotherapy for me, I don't know what side effects to expect. I also don't know which I'll still have because of the carboplatin, which also made up part of my last treatment. Will I become a super sniffer again? Will I produce the most smelly, room-clearing farts imaginable? Will Bitchy Tina make an apperance from the steroids I'm taking, even though the dose is much smaller? Will I sink into a deep, dark well? I don't know. And these are the experiences that don't appear on the side effects sheets themselves. I wait and see.

I do know I'll feel tired and will be susceptible to outside infections. To me, that sounds like a great reason to do little cocooning with some books, my bed and a big bottle of hand sanitizer.

I want to say thank you to everyone for all your messages with good wishes yesterday. It's awesome to know I have the support of so many people who love me.

Tina

Bye bye tail

It's been a constant companion for over a month now, but I've finally lost my tail. While that statement may be apropos for a crime novel, it seems a bit odd pertaining to an average person. But then again, I guess I'm not that average.

My tail was my drainage tube and it easily slid out amid a gush of fluid when the doc pulled on it this morning. The stitch came out a couple of days ago, and it was slowly easing its way out of my body anyway, but I wanted the doc to take a look at the area. So I went to the removal appointment this morning instead of having my home care nurse or Michael yank the sucker.

Since the tube wasn't in far enough, I wasn't getting any drainage yesterday. And the stuff that filled the reservoir the day before was bloody. I was concerned about the blood or the chance of infection, especially since the reservoir was starting to smell really funky, but Dr. L (the one who did my surgery at the end of September) didn't seem concerned.

I'm leaking copious amounts of fluid from the hole and need to change the bandage covering it every few hours, but I don't have the annoying appendage to drag around with me any more. Nor will it take up the space between me and Michael in the bed. But it's amazing how I've adapted to its presence because I went to grab the tubing when I got up from a chair the afternoon, only to happily realize it isn't there.

Now my main concern is fluid accumulation in my abdomen. I already know I'm fuller than I should be, but hopefully the ninjas will quickly work to stop the ascities production with the very first dose of chemo tomorrow. My appointment is at 8:15 a.m. and it only takes about 2 hours, so I'll be done by mid morning and ready to face the side effects. I just want to get this process started.

So think of me as you sip your morning beverage tomorrow and root for those cancer fighting ninjas in the chemo. Die cancer die!

Tina

Tumbling

As you can tell from my posts over the last few days (maybe even weeks), my situation is sliding downhill. In discussions with the homecare nurse last night, Michael says he's really noticed a big change in the past few days. I feel awful almost all the time, and that affects both my body and spirit. I also feel weaker and less able to cope with the physical and emotional aspects of this disease.

And I hate it!

I threw up again this morning, even when I hadn't eaten anything. But I had plenty to vomit, which leads me to believe my body isn't processing food very quickly. I'm upchucking at least every other day, but most of the time it's when I've eaten too much. Now I guess it could be whenever my body feels like it. Sheesh.

I'm praying once I start chemo on Thursday, it'll start to dry up the ascities, stop the pressure on my stomach and make me feel better. I hope it happens quickly, especially since after much circular discussion among various doctors at the hospital yesterday, I now have an appointment to remove my drainage tube tomorrow. While I'll be happy to be rid of the inconvenient - and potentially infection causing - tail, I worry about filling up with fluid. I still drain approximately 300 mL of ascities via that port daily. Once the tube is gone (and before the chemo starts to stop the fluid production) my abdomen will swell and I'll need paracentisis, which is drainage via a long needle and vacuum containers. And it's as yucky as it sounds.

I feel like a stone, sliding down the side of a cliff. The top of the embankment wasn't very steep and the movement was slow. But now the slope's increased and so has my tumble into the abyss. Let's hope for a leveling off soon so I can stop this decent, regain some strength, stamina and focus.

Luckily, through this entire downward spiral, I have the amazing support of a wonderful husband. Difficulties will drive some couples apart, but Michael is right here with me, rubbing my back, cleaning my puke, changing my dressings, holding my hand and stepping up in every way possible. You never know how your partner will react when faced with this kind of situation and I'm so blessed to have one who will care for me - in sickness and health.

I laid in his arms this morning after he rubbed my neck and shoulders to get alleviate a painful headache and knew he'd protect me. I felt weak and yet I could lean on his strength. That's unconditional love and I'm so lucky to be abe to count on it (even when I don't feel I deserve it) from my soulmate.

Tina

Grumpy

Toward the end of last week, I realized I'm tired of being in my own body. I'm weary of my stomach, abdomen or neck hurting. I  hate that I can't enjoy food and throw up semi-regularly. I'm frustrated and therefore grumpy. I don't have a lot of energy, initiative or enthusiasm. I'm certainly not a pleasure to be around.

On Friday, my drainage tube stopped working properly. We thought it was a flaw in the reservoir and jumped through hoops to get another one, only to discover that it's not the equipment, it's me. We think the tube emerging from my abdomen has stretched the skin around the insertion area so much, air is escaping and preventing the vacuum from sucking the ascities from my belly. While, I still captured about 300 mL in the reservoir from Friday to Saturday, the flow is now minimal. I woke this morning with ascities all over the front of my pajamas. And I'm uncomfortable. We'll call the interventional radiology department today to see if someone there can help remedy my situation.

If I'm tired of being in my broken body, I can only imagine what those with strokes, MS, Parkinsons or ALS experience. My situation is nothing compared to those individuals. But my physical woes are enough to break me down. I'm so tired of feeling bad. I hope it improves quickly when I start treatment this week.

Tina