Monday, October 31, 2011

Be careful with your wishes

Since I've always stuggled with my weight, I've wished I didn't love food so much. I envied the self control I saw in some to take small portions, enjoy them and be completely satisfied when done. I've wished for the ability to escew high-fat treats like donuts, baked goods, chocolate bars, etc.

But what I wouldn't give to be able to eat a full meal right now, complete with dessert, and not be uncomfortable afterwards. I went to my in-laws last night for dinner. I was famished and kept encouraging my kids to quickly finish the pumpkins they were carving so we could eat.

I thoroughly enjoyed the slice of garlic roast pork, mashed potatoes and gravy, along with the small spoons of beans and corn, but when I was done happily shoveling the smallish-sized plate of food in my mouth, I was in pain. I had to decline the warm apple pie topped by a scoop of vanilla ice cream my mother-in-law served for dessert and instead laid on the couch to encourage the pain-inducing gas to escape my body.

I have to lie on my left side to experience relief. It dawned on me last night, I have a tumour in my upper left quadrant (right below my ribs) that's probably causing all the ruckus. I'm sure when I fill my belly with nourishing food, it pushes against the tumour and I experience pain. That's also probably why I can only release the gas when I lie on my left side and gravity pulls the tumour away from my stomach.

I also desperately wished for this PICC line when I was in the hospital to spare me from constantly being used as a pin cushion to find a new IV site or draw blood, and as a conduit for liquid nutrition. Now it's a pain in the butt (or literally, the arm). Whenever the weekly dressing is changed, the line coming out of my arm shifts slightly so it rubs against my arm, causing it to bleed. So for a few days after the bandages are changed, I experience pain. The skin that's constantly under the bandage is also very itchy. I also have to cover the entire area with a plastic sock-like contraption every time I shower because wetness can lead to infection. I know I'll probably be grateful for the PICC line's existence when I start to get chemo, but right now I'm not thrilled with another contraption sticking out of my body and causing discomfort.

In the past, I've also wished for more time at home to read, relax and spend with my family; hours away from the rat race of work and extracurricular activities. But I certainly didn't want the time if it meant it had to be spent fighting an awful disease like cancer. Quite honestly, I'd rather be working and living a more normal life than having this time at home (and the hospital). Now, a few extra weeks of vacation would always be welcome, but to have time off like this is no fun. I'm stuck in limbo now, and later I'll be getting treatment and recovering from it.

While all three of my wishes came true, my sadistic fairy godmother put a cruel spin on each of them. I think it's time I trade her in on a new (and kinder) model. I think I'm due for some good magic.

So, be careful with your wishes. Or better yet, simply enjoy the abilities and blessings you have in your life today. Don't wish the time nor the good experiences away. They're all precious and you never know when life could change, flipping those wishes upside down.

It's Monday, and while you may be groaning, be thankful for a fresh week, a crisp fall day, a job, the little trick or treaters who'll be ringing your doorbell tonight and perhaps a special excursion or activity planned for this week. It's all good.


Friday, October 28, 2011

Tiny steps forward

I'm regaining my fighting spirit. My social worker commented on this transformation during our session earlier this week. Moving forward with a plan to tackle my cancer awakened my sense of action and purpose.

A warrior spirit is good because it pulls me up from the depressing, soul-sucking apathy of waiting and doing nothing. Oh, I know I'm healing, which is important, but my mind whispers warnings the delay allows the crafty cancer to gain a stronger toehold in me.

I was tackling the disease with the Regorafinib. My CT scans showed noticable shrinkage and my CA-125 level dropped significantly. But, despite its efficacy, it's not safe for me to take the drug again. So I must consider the other options.

My clinical trial nurse from Hamilton called yesterday to say Dr. H recommends I go back on chemotherapy - carboplatin plus either paclitaxol (the "gold standard" of ovarian cancer chemotherapy care) or gemcitibine, another proven chemo treatment. It's called "gentle gem" because of its milder side effects. But I'm not necessarily looking for mild, I want effective, potent and lethal to cancer cells.

Apparently, the P53 study is held up at the provincial level due to some wording in a consent form. While that sounds easy to resolve, I suspect the wheels of medical research administration move slowly. Then after the study is approved at the provincial level, each cancer centre must then seek the okay. Dr. H seemed to think this would only take a couple of weeks, but medical red tape and hospital bureaucracy will probably hold its start up longer than I'd like. While I'd prefer to also take this drug in conjunction with the chemotherapy, I don't think I can wait.

My next steps involve trying to get an appointment with Dr. W, the oncologist in London, who co-ordinates clinical trials. I suspect I'll hear back from the triage nurse today with an appointment for (hopefully) next week. London is also working to secure the P53 study, so during our meeting, I'll quiz him about timing and ask his opinion about my best treatment option.

But I suspect it'll be back to straight chemotherapy in London. I'll head back down the rabbit hole of darkness and experience the wide range of debilitating side effects. But I'll be beating the cancer back and reclaiming my body.

Maybe this is my path; how I'm supposed to treat my cancer this time. Perhaps it will create a window or an opportunity for a different experimental treatment - one that works - in the future. I have to trust in God and that everything happens for a reason.

I'm disappointed I'll be doing chemotherapy alone, since combining it with a new drug could prolong the cancer-free periods. But I will be working to beat this beast so I can enjoy time, and that's the most important thing.

My resolve is strong, but I'll need the support of my "village" to drag me up during the dark days. I know I can count on you.


Wednesday, October 26, 2011

Many options

I went to my doctor's appointment in Hamilton yesterday, anticipating information about and a recommendation between two cancer treatment choices. I expected to have (or be close to) a plan when I walked out of the Juravinski Cancer Centre, ready to move forward. Instead, Dr. H presented seven or eight different options for treatment. As a result, I left my doctor's appointment a little confused and with no definite path to follow - yet.

Since it was working, the first option would involve going back on the Regorafinib. However, I may have been off the drug for too long to continue on the clinical trial. In addition, Dr. H needs to talk to the drug company sponsor to determine if it's safe for me to continue taking this drug. It may have caused my duodenum perforation, and if that's the case, there's no way I could or would want to be on this drug anymore. But I saw the CT scans from the hospital compared to the ones taken just before I started the Regorafinib and I saw visible shrinkage in the size of the tumours after one three-week cycle, which is encouraging.

Dr. H will talk to the Bayer representatives to determine if I still qualify for the Regorafinib clinical trial and I should know by the end of the week. But I got the feeling this probably won't be an viable option because of the risk.

Okay, it's back to paclitaxel and carboplatin chemotherapy, I thought. But Dr. H presented several different options to consider - different combinations of chemotherapy, chemotherapy in conjunction with other drugs, etc. He went through them fairly quickly, so I have to admit I'm a little confused. But if the Regorafinib isn't an option, we'll discuss the other treatments - and which he recommends - in more detail.

From our discussion, I think my best choice may be to take the standard chemotherapy treatment of paclitaxel and carboplatin chemotherapy in conjunction with the clinical trial drug P53, which regulates the cell cycle and acts as a tumour suppressor, preventing cancer cells from repairing themselves. My tumour samples from my original surgery would need to be tested to ensure I have TP53 gene necessary for this drug to work. Approximately 60 per cent of people tested have the TP53 gene.

This clinical trial should be opening up within the next week or so in Hamilton (and may even be available in London), which is ideal because I don't want to wait around again to start treatment. I feel any delay is giving the cancer a chance to take over my body; my worst nightmare.

Some might question my willingness to be part of another clinical trial so soon after the last one may have caused serious medical complications, but I believe in the necessity of research to determine better treatment, diagnosis and a possibly a cure for ovarian cancer. That's also why I strongly support the Translational Ovarian Cancer Research Group at London Health Sciences Centre, which is the recipient of the funds raised by the Run for Ovarian Cancer.

Besides, it's been proven the remission time between every round of traditional chemotherapy becomes shorter and shorter before reoccurence. By taking another form of treatment, I could be increasing my window of time, giving me longer to live.

Dr. H also presented other options, including different chemotherapy combinations. Some involve IV drugs, while another is available in pill format. I've got information sheets on some of the different drugs, with their uses, precautions and side effects, but I'll need even more information before I can make a decision. I also need to hear what Dr. H thinks would provide my best chances to keep the disease at bay for as long as possible.

I also found it interesting to hear his hypotheses for my perforated duodeum: the Regorafinib, the Dexamethasone steroids, the pigtail poking a hole in the organ or possibly the shrinkage of the tumour surrounding the area, pulling a hole in the duodenum. Given that I didn't have a laparoscopy in the hospital to confirm the presence of a tumour in my stomach, we'll never know the exact cause. In a way, that's scary because I don't know how to prevent it from happening again (if I could).

So long story short, Dr. H needs to do talk to Bayer about the Regorafinib. He also has to determine if I meet the criteria for the other clinical trail presented. Then we'll talk. So no specific plan yet, but lots of information to mull over. Hopefully, in the next couple of weeks, I'll start treatment and begin battling this cancer yet again.


Monday, October 24, 2011

Same old, same old

I haven't blogged in a few days because I've nothing new or interesting to say.

I'm still in pain/discomfort every day from incisions, eating, gas or the cancer in my abdomen. Although I have cut way back on the painkillers, which is a giant step forward.

I'm still frustrated and impatient with my slow recovery. I want to feel "normal" now, even though I'm not even sure that's a state I can even hope to obtain. I may have to get used to my new normal.

I'm scared. I heard from at least two surgeons I was "full of cancer" so waiting around to heal before starting to target it makes me afraid it's invading and attacking other organs in my body. I'm afraid of dying in the near future and leaving all that is precious to me.

I'm lethargic and tired all the time, which frustrates me too. I'm trying to be good to myself, resting and napping, but it doesn't mean I like it.

I'm tired of not being able to eat properly. I love food, always have, and it annoys me when I can't partake in its cheesy, saucy, crunchy, savory, sweet or chocolatey goodness. Even my beloved coffee went by the wayside this morning because my tummy protested.

Wah, wah, wah.

Okay, for some good news, my mom and dad are both healing well from their surgery.

Noah is doing really well in high school. His marks are great and his spirits high.

Michael is doing better than he was, and coped quite well with the stress of me being in the hospital and my recovery.

It's been four and a half weeks since my impromptu surgery (can you believe it?!) so I can start cancer treatment soon. I meet with Dr. H in Hamilton tomorrow to discuss my options and hope to have a plan within the next couple days for eradicating the cancer in my body. Then I can move forward instead of feeling stuck in stasis.

Again, I need to remind myself to be patient and take one day at a time. To focus on the good things, even when it's difficult. Those are the things that make life worth living.


Friday, October 21, 2011

Frustrated rant

I haven't felt completely well since mid-June and it's starting to wear on me. I'm sick and tired of being sick and tired.

Dragging a drainage tube around with me everywhere I go is a drag. I'm starting to hate that Michael needs to change the dressings around the tube and wounds after I shower every day. The tape pulls at my skin and irritates the areas it covers, leaving them red and sore.

Since this is my fourth major abdominal surgery (two C sections and two vertical incisions), it's going to take longer for me to heal, but I'm unrealistically impatient. I despise the tiredness and the lack of stamina. I hate when I get sore and I can't even put the footrest down on my recliner chair due to my sliced up abdominal muscles. I loathe the pain that leaves me rooted to the recliner, unable to help around the house. Sometimes I feel useless, unable to perform the simple jobs I used to do.

But I don't see my situation changing any time soon. I still have to heal. And when I start treatment - whether it's the Regorafinib or chemotherapy - it's going to take a while for the drug(s) to work to dry up the ascities so I can get rid of the drainage tube. Both treatments also have their own set of side effects with which I'll have to deal.

I even dislike the PICC line - the very one I was so excited to have inserted in the hospital. I can't get it wet. It itches like crazy under the bandages and tape. It sometimes still hurts. And I have to be careful not to catch it on anything. I know it has and will continue to make my life easier for blood draws and inserting drugs, but I've had enough of having extra devices in my body.

I know I'm grumpy today. I've been feeling discombobulated for a couple of days. I just want to feel well, and I have no idea if or when that will happen to me again. I'm frustrated and on a little rant.

Thanks for letting me vent.


Wednesday, October 19, 2011

A long day

We left the house around 9 a.m. yesterday morning and didn't return until almost 12 hours later. It was a long day and I need to recover from it today with rest, relaxation and perhaps a nap.

First I had my appointment with my London oncologist yesterday morning. When I told him about the shrinkage seen on my CT scan after one round of Regorafinib, he seemed pleasantly surprised. I anticipated he'd recommend chemotherapy because that's the treatment with which he's familiar, but he encouraged me to go see Dr. H in Hamilton to discuss whether I could still be on the clinical trial and if my surgery and its subsequent delay in treatment excluded me in any way.

So, I made an appointment with Dr. H for next Tuesday to get more information and scope out my options. If the Regorafinib is effectively working and it didn't cause the peptic ulcer (Dr. P doesn't think it did), it may still be the best treatment option at this point.

After the trip to the cancer clinic, we had time to kill before my mom had to report to the hospital for her prophylactic double mastectomy, so we strolled around White Oaks Mall and had lunch. Of course, mom was required to fast, so she tortured herself by watching us eat lunch. I know exactly what that feels like given I spent many days in the hospital while others around me ate.

It's amazing how much my stamina has decreased over a short period of time. That combined with the abdominal pain from my surgery curtailed the amount and speed of my walking. Once I'm healed, it's going to be a long, painful road back to fitness.

By 1 p.m., we checked into St. Joseph's Health Care and the nurses whisked my mom back to prepare her for the three-hour surgery - which was a success. Even though she was wheeled into the operating room an hour early, she had some post-operative nausea delaying her release from recovery. Michael and I waited around to see her after the operation, so we didn't even leave the hospital until 8 p.m. My mom and sister started their 1-1/2 hour trek home about an hour later. I think everyone is going to be exhausted today. I suspect my mom will also be very sore.

When the plastic surgeon visited us in the waiting room to tell us the surgery was successful and to give post-operative instructions, she hugged me and said, "This was supposed to be your day too." Yup, it was, but the stupid cancer (and the unexpected perforated duodenum) derailed those plans.

But I'm happy for my mom. Her chances of developing breast cancer are now almost non-existent. Maybe one day, I too will be able to have this risk-reducing surgery.

Three successful surgeries in October. Now it's time for us all to heal and move forward.


Tuesday, October 18, 2011

October = surgery

October's been a crazy month for the Thomas family. Besides the usual hubbub of normal life, we've had a little extra excitement.

First, I had my little incident (said with more than a touch of sarcasm) with the emergency surgery and subsequent days in the hospital. Of course, that threw everyone's schedule into disarray and meant my family made many unplanned trips to visit me.

Then my dad had surgery last Thursday to repair a hernia. The surgery went well, he was up walking that afternoon and I think he started pestering the doctors to let him go home the next day. Since he was eating, walking and didn't need pain medication, they sprung him on Saturday. Now he's home going stir crazy, ooops, I mean recovering.

Today my mom is undergoing her prophylactic double mastectomy. This is the same surgery I had planned for this fall, but unfortunately, my cancer reoccurence and now my abdominal surgery postponed this procedure. As carriers of the BRCA-1 gene mutation, my mom and I have a high risk of getting breast cancer. We both decided we'd rather undergo and heal from the mastectomy and reconstruction, rather than fight breast cancer and need the surgery.

It's a one-day procedure; she'll be sent home tonight. That seems really quick to me, but apparently that's the way the doctors do it. Of course, with her operation scheduled for 3 p.m. this afternoon, it's going to be late when she can start the trek home with my sister.

Mom and Angie are coming to my appointment with Dr. P this morning and then this afternoon, I'll head to the hospital with them for mom's surgery. I'm going to wait with Angie as long as I can (translation: as long as I'm comfortable and not exhausted).

October's been a stupidly insane month. Let's just hope November is calm and peaceful. I think we could all use it.


Monday, October 17, 2011

Time and realizations

When something crazy happens in your body without you realizing it, you then question every odd (different, slightly strange, major, minor, etc.) feeling you have afterwards. While I knew my stomach hurt and I didn't feel well, I never suspected my abdomen was full of infected ascities and air. I never dreamed an ulcer careened into my stomach creating a hole. I didn't suspect I was on a deadly path and if I didn't veer off it, I'd meet my maker far sooner than I planned.

So after spending all that time in the hospital - with no desire to return - I'm home recovering. I know abdominal pain is to be expected because the doctors cut a long incision in my belly, washed my abdominal cavity out and inserted two ports. I suspect the ulcer could also have caused some painful damage. Then with my vastly shrunken stomach, I'm still having great difficulty eating and drinking much. When I do, I overestimate its capacity and end up hurting. I also think I need the nutrients and hydration to heal so I try to eat regularly.

But I don't know what is normal, healing pain and what could be an indicator of a problem. That worries me because I don't want to end up in a similar situation. I wonder if the hole has really healed or is everything I'm eating ending up in my abdomen to ferment, rot and cause infection? Is this stomach discomfort normal after not eating for 10 days and it'll only take time for it to stretch back to a normal size. Is my cramping abdomen and aching back pain expected after my type of surgery? Is the bloating normal? Is heartburn typical? Argh.

To say my experience scared me would be a bit of an understatement. Now that I'm home, with time to process the entire hospital adventure, I'm even more frightened. I figured with my cancer, I'd know when I was declining, with time to say goodbye and put my affairs in order. But now I'm realizing, I could develop a complication that could pluck me from my life with little notice or warning. That reality fills my heart with terror. I'm not ready to go.

Perhaps my doctor's appointment tomorrow will answer some of these questions. Maybe time will heal and reassure me. But one thing is certain, I have to process my realization and new reality. And that may take some time. Let's just hope I have lots of time to do just that, and more.


Sunday, October 16, 2011


I've been incommunicado over the past few days because I've been relaxing and reconnecting with my family. For the most part, my new home reality involves a lot of relaxing, some naps and only a few activities because I've still got a lot of healing to do. I think Michael and I also needed time to cocoon and be together over the past few days, assuring ourselves I'm still here and we can tenatively move forward.

The time since I've come home has been a little surreal, as if I'm a little cut off from reality. In fact, the entire month of October has been weird. I've either been in the hospital or squirreled away in my home, the hands-down preferrable location. But my situation changes next week, as I start going to appointments and getting out, so I'm sure my life will start to feel a bit more normal then. I see Dr. P, my London oncologist, on Tuesday to discuss next steps for cancer treatment.

I spoke with my clinical nurse from Hamilton on Friday and during the conversation I learned an interesting fact: the Regorafinib had started to shrink my tumours. When Dr. H reviewed my CT scans from when I was in Emergency and compared them to the ones taken before I started the clinical trial, the cancer was smaller. After only three weeks on the drug, there was visible difference. Hunh.

I'd had my mind made up I was going to do chemotherapy. It had worked in the past to kill the cancer, albeit for short periods of time, so I was determined to go with the proven treatment. But now that I've learned the effectiveness of the Regorafinib, I have two options.

Part of me is scared the clinical trial drug caused the ulcer perforation. My nurse said that while she cannot be 100 per cent sure it didn't (because it is an experimental drug), there are no indications the Regorafinib causes these types of side effects.

So I've got a tough decision ahead of me in the coming weeks. I'll gather the data, assess my situation, pray and figure it out. I think a trip to Hamilton may also be necessary to get the information I need.

While my body is still in my little isolated world, my mind is already making the foray into the bustling world of reality. I've got letters to write, budgets to balance, benefits to submit and other computer work to do. Physically, I may take one more day to hibernate and heal in my home before popping some pain killers and moving out into the world to (more slowly) get things done. Wish me luck.


Thursday, October 13, 2011

My own bed

Last night, I sat on my own couch, holding my husband's hand, and watched a movie with my family.

I slept in my own comfortable bed, and my back and shoulders are thanking me for it this morning. No one came in my room throughout the night to change an IV bag or check my blood sugar.

I wasn't awakened at 5 a.m. by a nurse who needed to empty my drains and check my blood pressure, pulse and oxygen levels. Nor did the doctors congregate around my bed this morning to discuss my case in five minutes flat.

I'm able to sit in my own office and write my blog this morning, instead of from a not-so-comfortable hospital bed.

I get to see my kids and help them get ready for school.

It's good to be home.


Wednesday, October 12, 2011


By 12:30 this afternoon, I was in my own home. It looked so big and felt a little strange. It reminded me of times when I've returned from a vacation where I'd made a hotel room or mobile home base for a week or two. I always appreciate my humble abode so much more. That's especially true this time, when I lived in a hospital room for almost two weeks.

The first thing I did was hop in my bed for a 1-1/2 hour nap. I slept soundly and didn't move for the entire nap time. Sleep is very rejeuvenating and absolutely necessary for the healing process so naps will probably be part of my routine for the next while.

It was awesome to greet my children when they got home from school. I got big hugs and smiles. Tonight, the Bratschers will spend some time together as a family, doing something normal. We'll nosh on pizza, watch a little TV and probably head to bed early.

Remember, just because I'm not in the hospital any more, doesn't mean visitors aren't welcome at my house.

It's good to be home.


Homeward bound

Thirteen days.

I've spent almost half a month in the hospital.

It was still September when I shuffled into Emergency, all hunched over and in pain. Little did I know my life was about to change, probably forever. This whole experience is a complication from my cancer, the first one.

Up until now I've only treated the disease by undergoing chemotherapy or taking clinical trial drugs and suffering the side effects of these treatments. But this is the first time another organ or system was seriously affected and needed attention. It wasn't a simple, benign complication, but a life-threatening one. The transition from only needing to treat the disease to experiencing other medical problems because of the disease frightens me.

But as my doctor said yesterday, we'll take each one and deal with it as it comes. That's good advice because I could get overwhelmed and panic if I think about it too much.

So today, I celebrate going home - to my family, my home, my bed. I'm sure I'll progress a lot quicker down the road to recovery in my comfortable home environment.

Thank you to everyone who visited me in the hospital. Your cheery smiles and distracting conversation made it easier to tolerate this place. I also want to say thanks for the flowers, cards, photos, gifts and phone calls. It's nice to feel loved.

I'm a lucky woman, who gets to go home today.


Tuesday, October 11, 2011

One more day

If all goes well today, I go home tomorrow!

The doc I saw yesterday, when he progressed me from liquids to solids, talked about me going home today. When he said that, my heart leaped into my throat. It felt too quick after reintroducing food. I felt as if he were tossing me out without really knowing if all was functioning properly.

But I got a new doctor this week (I think when you come in via Emergency into general surgery, the lead doctor rotates every week). The new doctor actually talked and listened to me this morning. I said I felt very full, uncomfortably so, from eating, which concerned me. She said that's normal because my stomach shrunk, as long as I was passing gas.

She's going to get rid of the TPN today, which is also suppressing my hunger. So hopefully that will reduce the feelings of fullness and encourage my hunger to return. When I lose that line, I think I'll be free of all my IVs. And if they remove one of the drains today, I'll be down to only one drain to cart around. I'll go home with that one drain, which will probably stay in until the ascities production stops with cancer treatment. The rest of my staples also come out today.

While it would be great to go home and sleep in my own bed tonight, I feel more comfortable with the plan to keep me one more day. That way we can be sure all is working properly.


Monday, October 10, 2011

Happy turkey day

I was eagerly anticipating real food for breakfast this morning, so you can imagine my disappointment when I got orange jello, orange juice, coffee (which I drink with milk and could only have black - blech). I didn't realize the doctor had to change the orders today before I got real food.

He stopped in around 10:30 a.m. and I guess since I didn't vomit up the clear liquids, he said I could have real food. In other words, he didn't ask how I felt or how I thought it was going, but looked at my chart and made a decision.

As a result, I was really looking forward to lunch. When the tray arrived, it once again held only clear liquids. I reiterated the doctor's diet change but was told the order probably didn't get put through in time so I was still on clear liquids. So I sipped up the veggie broth, but I couldn't eat another jello nor did I want the grape nectar. When another porter came to get my tray, I mentioned my sad situation and she took action. She scrounged some food for me so I could eat.

I noshed on a turkey sandwich, half a piece of nut bread and some cranberry juice. I was brought so much food, I have leftovers: vanilla pudding, apple sauce, social tea cookies. I'll never eat it all, so I'll send some home. I go from fast to feast.

Turkey is the theme of this Thanksgiving day because I got two slices of it for dinner with mashed potatoes, gravy and mixed veggies. I was able to consume about half the meal with some apple juice before my tummy said, "Enough. I'm full." It doesn't take much to fill me up now. But I've got a lovely piece of carrot cake and some Carnation Instant Breakfast if I want something later. (I suspect the carrot cake will be the first priority.)

I've got some cramping and gas, which my nurse says is normal when reintroducing food. It also feels weird to feel full. The important thing is I don't have any nausea or vomiting. So far, so good.

I got half my staples out today. If the incision stays together and continues to look good, the other half will come out tomorrow. Wow, another step forward. The docs were also talking about taking out one of my drain tubes. The one that drains the most gets blocked by blood clots, so I'm not sure which they'll take out before sending me home. I suspect the removal will hurt, but it will be good to be down to one drain.

One day at a time. Every hurdle I jump is one step closer to going home.

Happy Thanksgiving to all my Canadian friends.


Sunday, October 9, 2011

So flavourful

It was the most flavourful chicken broth I've ever tasted. An explosion of tasteful bubbles filled my mouth from a ginger ale. I sipped super orangy orange juice. I can't believe how flavourful foods are when you've only tasted ice chips for 10 days.

My doc came in mid-morning and said I could drink today. I was so excited, yet nervous. The nurse quickly brought me a diet ginger ale and I took some tentative sips of the very tasty liquid. At lunch, the nurses and my sister diligently watched the tray delivery to ensure I got one with clear liquids. Then I feasted (and that's what it felt like) on chicken broth, a few scoops of cherry jello and some orange juice.

After that exciting, but small meal, I was full. I'm sure my stomach has shrunk considerably over the past week and a half. And I'm cautiously taking it slow. It's better to consume small amounts and let my body get used to it than to watch them come back up. In addition, it feels weird to actually have food in my belly again.

Of course, I'm monitoring how I feel. I notice every little growl, burp and twinge because it could be a sign I'm not tolerating the liquids well. But my stomach felt okay this afternoon; different, but not necessarily in a bad way.

I even had another cup of chicken broth and the full jello for dinner. I'm also sipping a punch of orange juice and ginger ale. Of course, I have to keep putting ice in it because it warms up over time. I'm not quite up to guzzling anything yet. Small swallows are all I can do, and one can of pop is lasting me all day.

I'll see what the breakfast tray brings in the morning. Perhaps I'll move on to soft foods tomorrow. Despite this giant step forward, I'm not anticipating when I'll go home. I am taking it one day - or maybe that should now be one meal - at a time.


Saturday, October 8, 2011


Healing takes courage, and we all have courage, even if we have to dig a little to find it.
- Tori Amos

Today, I've been focusing on healing. I've napped, sat in the fresh air, gone for a walk and rested. I look and feel good, I just have to believe my insides are healing as well as the outside.

I talked to the resident this morning about the risks of feeding me on Monday. If the hole isn't closed and food makes it into the abdomen, I could develop another infection. They'll watch for increased pain, fever and monitor my white blood cells for signs of infection.

I'm excited about getting something to eat on Monday, but I'm also nervous. I'm afraid of the potential negative side effects. It's a little ridiculous considering I'm so anxious to eat after nine days with nothing but ice chips. I was also a bit nervous about getting the NG tube out last night, afraid I'd start to feel nauseous without its stomach-acid-sucking function. But I feel great. I love not being tethered, with a sore throat and an elephant nose.

I guess I'm scared because of all the bad experiences I've had over the past week and a half. I've had too many painful and negative things happen to me in the hospital. In the past, I've usually had surgery, recovered nicely, healed quickly and checked out earlier than expected.

Although, when my son was born, I developed a severe form of pre-eclampsia called HELLP syndrome and almost died. But after I was out of the woods medically, I healed quickly and headed home to be a new mom.

With chemotherapy the side effects were awful, but they weren't necessarily unexpected.

I've never had so many unexpected and unplesant experiences at one time - from emergency surgery to a long-tedious, food-free stay - so I'm discouraged and frightened. And as the resident told me this morning, I'm not a "typical" patient because of the cancer making its home in my abdomen. It's insidious and large presence complicates my medical situation. As a result, the doctors can't compare me to others to guess on healing time. I'm unique. I guess I'm a great learning opportunity.

And maybe that's why I'm going through all of this. Maybe the medical system can learn from me, my experience, my reaction to Regorafinib or steroids (or whatever caused this all), etc. But, ultimately, I want them to learn how to make it better - for me and for others with cancer. I want to get better.

And that does take courage. So I'm trying hard to dig deep and find the strength to believe, be positive and not get discouraged. After all I've been through, that's far harder than it used to be, but I'm trying.


Friday, October 7, 2011

Bye bye elephant woman

Today came with some unexpected developments. I woke this morning feeling groggy, shaky and a bit down. I think after the progress and activity of the past few days, I knew I was settling in to wait for the internal healing and no real progress until next week. But two big and exciting events happened.

My primary care doctor actually came in this afternoon and told me they're just going to start me on food on Monday. So no CT scan to see if the hole is still there. He said, it'll be seven days from the last CT and 10 from surgery, so there's a good chance it'll be healed. Although when I asked if the risk was low, he said, "I wouldn't say that at all." I don't know exactly what that means (because the doctors zip in and out of my room with little chance for contemplation or questions) but I will ask the resident in the morning.

I'm so excited about getting real food. And by real food, I mean clear liquids at first - jello, broth, juice. Two more days.

Then tonight, I got the NG tube removed. I no longer look like an elephant. I don't have a machine suctioning out my stomach juices anymore. I was a bit nervous about its removal, but the nurse pulled it out quickly and then it was out. It's very freeing. I now only have my two drainage tubes and the IV pole to cart around with me.

Speaking of drainage tubes, one of the fluid collection reservoirs got plugged by a blood clot last night and I was oozing fluid from the drain site on my abdomen. But Michael's eagle eyes discovered the problem, my nurse replaced the reservoir and I seem to be draining properly again. Whew.

I'm tired tonight and I was a bit more sore than usual today. But I've been active too. I went for a long walk today (probably a couple of kilometres) in the sunshine. Again, it was good to get outside. I'll try to get a few blocks of sleep tonight between tests and IV changes so I can rejeuvenate. And over the next two days, I'll work on healing internally. While I may not have a lot of control over that, I'll try to get lots of rest and think positively.


Almost unbelievable

In this strange, surreal, not-quite-part-of-reality place, I had an amazing day yesterday. I achieved all three of my goals.

I was so excited when my nurse walked in at 8:30 yesterday morning and said I was going for my PICC. I couldn't believe it was actually happening. By 9:30 a.m., the procedure was done and I was headed back to my room. I've now got the nutrition and all my drugs oozing in. They don't have to poke me any more!

It'll take me some time to get used to the lines and the sleeve of the PICC, but I have no doubt I'll figure it out before long. I also have to figure out what I'm going to use as a cover for the site. It's something I didn't consider before getting the PICC, but it's a minor concern now (and a slight annoyance). It's not like I had a choice, I needed the PICC, but now I'm realizing there's some unpleasant repercussions of the whole thing. Maybe a walk to the cancer centre today will give me some ideas and someone there can talk about tips for dealing with a PICC.

I also got outside yesterday afternoon. Angie and I walked all around the building in the sunshine. I got my exercise and fresh air too. It's amazing how wonderful the wind blowing on your skin feels when you haven't experienced it in a while.

I didn't think I was going to achieve my third goal - a private room - because at 5 p.m. I was still sitting in my old bed. Earlier in the day my nurse told me a man was going to be discharged and I'd get his room, but those discharge orders didn't come through. Then suddenly, I was told a room was being cleaned and it would be mine.

Just after 8 p.m., we gathered up all my stuff - and it's amazing how much stuff one can accumulate in the hospital when there for a while - and I slipped across the unit to a big, private room with a wall of windows that overlook downtown. I've only seen the sparkling lights so far, but I look forward to having sunshine, light and that gorgeous panorama of North London as I sit in my hospital bed. If I'm going to be here for a while, I may as well have a room with a view.

As well, my visitors won't bother anyone. I'm so lucky I get lots of visitors and sometimes I worried about disturbing my neighbours. And then I'd overhear the conversations of my roommates, which I know were private. So, this is better all around.

Yes, I'm up early. I had to go pee and without the catheter, it's all up to me. I was all set to get up and move my way to the bathroom independently, but then I couldn't get the NG tube pump unhooked. I'm squirming, with my legs crossed, and the tube was shoved tight. I wasn't budging it, especially from my angle. I had to call the nurse. But that also got me some overdue pain medication, which is never a bad thing.

My stomach is growling at me this morning. It's a weird sensation not being able to eat. I'm hungry, but I'm not. My tummy sometimes rumbles in protest, but my mind accepts I can't eat. Don't get me wrong, if the docs said I could start consuming food, I'd be overjoyed and ask when breakfast was coming. But I'm amazed how the brain can accept controlled hunger like this. Although, when we walked through the Tim Horton's yesterday, with all it's tantalizing smells, my stomach lurched and loudly rumbled, with an almost painful physical tug. It was screaming, "Feed me!"

My goals for today? Get outside again, get some exercise and mentally cheer for my body to heal on the inside. That's the only way I'm going to get out of this place. And as improved as my situation is, I can't wait to go home.


Thursday, October 6, 2011

Three goals

I woke up this morning and envisioned the accomplishment of three goals:

  1. My PICC line inserted.
  2. Move to a private room with a window.
  3. Get outside.
By 9:30 a.m., the first goal was accomplished. Yes, I got my PICC line! I'm so thrilled because now I can get everything done through that one port. No more sticks. I can get nutrition. They can draw blood. My poor, bruised arms can heal.

My blood work last night revealed my potassium, magnesium and phosphorous were all really low. So they had to infuse those into me via IV last night. I'll now get them in the liquid nutrition, which should also suppress my appetite. My tummy is growling this morning in protest of no food for so long.

My catheter just came out too. Another little step to freedom and normalcy.

Last I heard, my chance of moving to a private room with a view was looking okay too. A man was waiting to see if he was being discharged. If he goes, I move.

And since the medical stuff happened already, I should be able to get outside today and enjoy a bit of sunshine. So Thursday is looking pretty good so far and I'm thankful.


Wednesday, October 5, 2011

Don't hold my breath

I'm not surprised. I've ceased being amazed  by how long everything takes around here. Yup, you guessed it, I didn't get my PICC line today. I stayed close to my room all day waiting for them to come get me for the procedure. So I didn't make it outside to get fresh air or visit the butterfly garden. I didn't even make it off the floor. I only managed to travel several laps around it. Not exciting, and a little depressing.

Tonight, a nurse discovered one of my two IV sites was failing. So she had to find another. Luckily, after two tries she did and managed to draw blood from it before inserting the IV. Unfortunately, it's right in the crook of my arm, which is typically unstable because it gets bothered when bent. Then it sets the tranfusing machine beeping and that can only be resolved when I call a nurse. It's tedious. And then I have to be very careful about how I use my arm. My movement is already a little limited.

The good news is they managed to fill up several tubes of blood so they can run some lab tests. I don't like that I'm sitting here, not eating and they couldn't draw enough of the red stuff to make sure the big fast isn't screwing with all my levels too much. Now they can run the labs. If something is completely out of whack, it only provides more evidence they need the PICC line stat.

I suspect I'll get it tomorrow. While I knew better than to hold my breath about it today, if something doesn't happen by about mid-day tomorrow, I may have to throw a hissy fit. For me, that will probably involve a lot of tears and ranting. It wouldn't be pretty. Hopefully I'll make a trip to radiology tomorrow morning and that will prevent the ugly scene.

Tonight, I'll try to get some rest, not think about food and wait for tomorrow.


4:30 a.m. musings

As I was laying in bed at 4:30 a.m. this morning, I tried to process some of the emotions flitting around in my head and heart.

I'm still sad and frustrated I'm here and will be for what feels like a long, long time. I had a little cry about the thought of being stuck here during this beautiful week and over the turkey holiday.

But as I was lying there, I thanked God I'm still alive. That's the most important thing. Now I have to heal and then kill cancer.

I asked Him for patience to get through this next week or so. Hopefully little things will improve that will make it incrementally better. For example, they're pushing for a PICC line today - apparently they're using more forceful language in the chart - which will give them a place to get blood and give me nutrition. Getting blood from me right now is like drawing it from a stone.

And perhaps I'll get more mobile, which will make it easier to get around and that will make me happier too.

During our little talk, I also thanked God for all the amazing support and love that's being poured upon me. I'm so lucky. Michael is here all the time, and Angie lots of the time, keeping me company, advocating on my behalf, making sure I'm getting what I need outside the little space I can reach from my bed, taking me for walks, rubbing my back, helping me shower and smoothing cream on my poor, dry feet (still recovering from the blister attacks of the Regorafinib).

Then I'm getting lots of visitors - my parents, in-laws, kids, friends - making sure I'm not lonely and asking if I need anything. I've also received some beautiful flowers brightening my room (thank you!), a funny card from work with lots of get well messages and some little gifts.

Then there is all the online support, which I really appreciate. I'm thankful I'm so connected through Facebook, texting, email and this blog because I don't feel quite so lonely. I know there are lots of people rooting for me and love me - and that makes me feel so blessed.

Bottom line, I have to be thankful. Even if I'm not happy about my situation, I am very lucky. With the sun shining in the little window in the corner of my room, I have to remember the positives in my life.


Tuesday, October 4, 2011

A patient patient

I'm going to have to learn to be a patient patient.

The CT scan showed there is still a hole in my duodenum and I have to give it time to heal. So no food, no drink and I will be here for a while - probably another week. That's the hardest part for me. I'm trying to get my head wrapped around the fact I'll be stuck in this hospital bed for another week.

When I got the news, I was walking around the floor. Upon learning the long-term nature of my stay, I steered my IV pole to the elevators to go outside. I was feeling rather claustrobic with the idea I'd be stuck in this place for so long. I pushed my IV pole outside into the beautiful fall day and took some deep breaths. I'm going to have to incorporate some trips outside or to other floors during my walks to get some fresh air and change the scenery.

And that's part of the problem. I'm stuck in a beige room with a tiny window that I can't even see out of due to the position of my bed. All of the other rooms have giant windows looking out over the city. And the view from the 9th floor is quite beautiful, if you can see it. And though I have private coverage, many of those rooms go to those who have infections. Some are available, but unless I can get a good bribe or something going on, I doubt I'm going to get one of those. A private room with a view would help make this long, tedious stay a little easier. Sigh.

The next steps will be getting a peripherally inserted central catheter (PICC) line inserted so I can get some total parentenal nutrition (TPN) or beige liquid food in a bag that is infused directly into my liver. It avoids the stomach and gives me some nutrition, which I need to heal. The problem is, the wait list for the PICC lines are long. The doc is hoping I will get one by the weekend. Seriously? You'd think my situation would be priority.

And if I can get rid of some of the other lines connected to my body - the catheter, the NG tube - I will be less tethered and able to get up by myself to walk around or items for myself. The NG tube is connected to a machine on the wall and the catheter just makes it more difficult to get up. It can be done, but I need help to do it. If those were gone, I'd just have my IV lines and my two drainage collectors that I could quickly collect and be on my way. A bit more freedom would make this a little easier.

My doc said he'd check the healing of my stomach with a CT scan again on Monday. I think he forgot that's Thanksgiving Monday and therefore a holiday. So that's why I suspect I'm here for at least another week. And then after my stomach heals and they put me on clear liquids, they'll have to make sure I am processing them fine before moving up to solids. That takes a bit of time too. Just thinking about it makes me tear up. I'll come to terms with it, probably overnight, but it's difficult for me to accept tonight.

I guess the good news is I now know there was an ulcer that caused a hole and it's healing. But I'm not 100 per cent sure what caused the problem. It could have been the Regorafinib. If there's even the slightest chance that's the case, I will not be taking it again. But I need a conversation with Dr. H. to determine the best next steps for my cancer care. I suspect it will be chemotherapy in about a month. I've had it confirmed by a couple of doctors who were in my abdomen, there's lots of cancer in there. It needs to be treated so it can die!

So first some healing and then some killing. We know the chemo works and even though it sucks, I need to get rid of the cancer so I can live. That's the bottom line.


Monday, October 3, 2011

Total meltdown

The day started at 5 a.m. with such promise. My docs did their rounds and came to talk to me (yes, you read right, at 5 a.m.) and told me I'd be getting the constrast test done today to see if there actually is a hole in my stomach. I don't think there is and my whole problem was caused by the infected ascities. So I was eagerly anticipating getting some clear liquids for lunch or at least dinner.

I had my shower at 9:30 a.m., did a couple laps around the halls for exercise and then settled in to wait for them to come pick me up and take me for the test. With each hour I sat in my bed, my spirits sank lower and lower. By noon, I was anxious and irritable. By about 2:30 p.m. I was weepy, wondering what was taking so long and anxiously counting the hours until the department closed. By 5 p.m. when I was sure no other patients were making their way to radiology, I was bawling in my bed.

My nurse was great. She made numerous phone calls during the day to try to get answers. She was trying to help in any way. She came in shortly after 5 when I was a soggy heap on my bed and got a doctor to come see me.

Now, the doc I got isn't actually on my care team but was one of those who did the surgery on Thursday night. She sat down and asked what was the most frustrating part of the day. After tearing up, I said I was told I was having a test at 5 a.m. that would prove I don't have a hole in my stomach and then I could eat, drink and get my strength back so I could get better. I waited 12 hours with no answers and no test. She was understanding and sympathetic.

She explained there is one specialist who does this kind of test and he was gone for the day so I couldn't even get an emergency reading tonight. She explained the problem was a (stupid) lack of communication. The doc tried to call a member of my care team today (and they were very tied up with an important procedure or something today and therefore there were fewer of them to get back to this doc) to confirm why the test was being done. No one got back to him, so I didn't go down.

But the doctor assured me she would get my care team or personally make sure the test is scheduled for tomorrow morning. She asked me to be patient one more night. I can - and am - doing that. I'm really hungry though. I'd love some food and a nice glass of tasty juice. No quite honestly, I'd love some chicken pot pie but I have to start with clear liquids, remember.

I feel better because someone actually listenened to me. I felt I wasn't being heard. I was talking to the residents when they stopped by every morning, ask questions, ask them to stop back so they could talk to my sister, ask them to give me answers and then I'd never see them again until the next morning. I was beyond frustrated. But this doc listened to me and is actually doing something to make sure I get what I need.

I also learned they washed and washed and washed my abdomen during the surgery. I guess it was pretty full with the infection. I feel better about the whole getting cut open thing now that I know I was a bit of a mess in there. A dangerous and disgusting situation that is better off remedied through a good cleaning. Now I can get better.

Oh, and as for the picc line I'm supposed to get, apparently the list for that procedure is long too. So I didn't even get that today. I'm still blowing veins and they're having trouble drawing blood. The fact that didn't happen either contributed to the frustration. Nothing happened today. I sat around and waited, with no progress.

But I can be patient one more night. I feel I'm not only taking it one day at a time in here, but hour by hour. Let's hope the next 12 or so give me some answers - and then some food.


Dignity at the door

When diagnosed with a serious illness or need invasive surgery, you may as well check your dignity at the door. The tests, procedures, examinations and care you need all mean you're poked, prodded and exposed far more than you'd ever like. While you don't really get used to it, you manage to endure it because it's necessary.

Most women discover this phenomenon for the first time during childbirth. The whole birthing process involves checking progression and progresses into the baby making an appearance. But with the pain and knowledge you're creating a baby, after a while you don't seem to care who needs to check and see.

It's a little different when you're sick. You're not creating life and you going through the very natural process of childbirth.

But I have to admit, I'm getting used to everyone and their dog checking my incision site. That often means exposing other areas of my body because I'm just in a loose hopsital gown. To top it off, I'm pudgy and dimpled. My abdomen has rarely been an area I'd willingly expose to anyone. Yet, it where all the action is for me (not a nice smooth calf or an innocent shoulder.

While embarassing, I do realize the docs and nurses have seen it all. I know this is all routine and it's just another body part to them. I'm embarassed, they're not.

It's a little embarassing getting help with care from someone other than Michael, who as my husband has seen it all. My sister has now seen far more of me than I'm sure she or I really want, but I've needed her and she's completely jumped in with help and care. She's amazing like that.

I mentioned the lack of maintaining a lot of dignity while in the hospital to the nursing staff the other day and she completely agreed.

With my cancer, surgery, clinical trials and everything going on with me, I've had to shed a lot of my embarassment and do my best to check my dignity at the door. As long as I don't lose my sense of humour and feelings of thankfulness for the care I receive, I should be okay.


Sunday, October 2, 2011

Brief update

I figured I'd better get online tonight and give at least a brief update.

I'm feeling better today. I'm diligent about ensuring they give me my morphine shot every four to five hours because it helps me stay on top of the pain, which is very important. Being pain free means I move around, can adjust myself in bed and, most importantly, heal. I do have a giant incision in my abdomen and two big port holes. That's going to hurt. I absolutely need good painkillers right now.

I blew another IV site today. It wasn't a really good one to begin with, but I took a shower and the movement dislodged it and meant I needed a new site right away. Unfortunately, the good IV nurse couldn't come immediately. So I sat in my bed, with nutrition supplement all down the side of my clean hospital gown and waited for more than an hour (and it could have been longer because it sure felt like long time) for the nurse to come and put in a new site.

It took four times to find a site where the vein didn't collapse or move. And while it's not the most ideal location because it's sore, it's in and I don't set off alarm bells by doing things with that arm. I'm just happy I have the two sites I need to get the intravenous fluids I need.

After that ordeal, I took a nap. Then I got a new hospital gown and went for a half hour walk around the floor. I'm encouraged to get up and move around. My shower, which is a chore in itself, and the walk got me up and moving like the doctors ordered. If I didn't have to bring my two drain containers, my catheter and my IV pole, I'd be up and about a lot more. But to take a walk, it's a bit of a production that involves both the nurse and my family.

I'm also feeling a little frustrated because I'm not getting the answers I need and want. Of course, it is the weekend and I'm getting residents who stop by at 6 a.m. to talk to me. Then I ask them to stop back at the end of rounds so they can answer the questions my sister has (she was at the hospital by about 7 a.m.) and they didn't. Grrrrr.

Right now, I'm getting some potassium in my IV because it's gotten a bit low. I'm getting lots of stuff designed to help me in my IVs all day too. They're taking good care of me.

I'm getting a PICC line put in tomorrow so they won't have to stick my poor, damaged, collapsed veins all the time. I'm not sure how much more they're going to get out of them anyway. And they can also give me my total parenteral nutrition (TPN) through it too.

Earlier today, I was told I was going to have a procedure done tomorrow where contrast would be put down into my stomach to determine if there's a leak. Now I've been told it's been put on hold. I will ask questions in the morning as to why because I think it's a great idea. If they don't find a leak, I can eat and drink again - and get the NG tube out of my nose.

When I see the docs tomorrow, I'll ask my questions and next steps. But I've also realized I have to learn a little more patience because I'm going to need time to just heal too. That could involve the status quo with all the lines, external sources of nutrition, the NG tube, no food or water, etc. All that means being dependent, with all its frustrations. I know the people who love me don't mind, but as I said, it's hard for me. I need patience with a capital P.

So that's the scoop. I'll share more as I know more.

Goodnight all.


Saturday, October 1, 2011

A sharp left turn

I know I just disappeared, but I have a very good reason for being absent from the blogosphere for a few days. My life took a dramatic and sharp left turn on Thursday afternoon and I'm now lying in a hospital bed recovering from surgery. Man I go for dramatic, don't I?

So I was diligently working away at home on Thursday morning. I had three good bowel movements in the morning, so I thought I was on my way to feeling better; but my abdomen continued to feel worse. In fact, I hurt from just under my rib cage all the way down to my pubic bone. Every muscle in there hurt, like I'd done 1,000 crunches the day before (after not exercising for a long while) and was paying the price. I couldn't walk upright and even urinating hurt.

At about 11:30 a.m., the pain got worse. By noon, I told Michael I needed to lay down. I'd gotten chilled, was shaking, hurt and Michael said my lips turned blue. He helped me to the couch where I laid slightly curled, covered by a blanket, shaking violently and moaning. After a short while, I was yelling and doing labour-type breathing to get me through the pain. (I'd sent Michael off to a doctor's appointment, assuring him I'd be fine.) But nothing got better during his absence and when he returned at about 1:30 p.m., I said we were going to Emergency.

The drive was painful. I felt every single bump and curve in the road, and walked in all bent over when we arrived at the hospital. After triage, during which I discovered I had a slightly elevated temperature and blood pressure, and a rapidly racing heartrate, I was assessed as an orange. Only red is above. As I sat and waited, I told Michael I'd be really embarassed if the problem was gas.

The resident was awesome and he pegged me right away. He told me I couldn't hide my pain and suffer in silence. I had to tell him everything I was feeling. He put me on strong antibiotics and pain killers, and sent me for x-rays and a CT scan. I'd completed all those tests by about 6 p.m. and discovered I needed immediate surgery to fix a hole in my stomach caused by an ulcer, which they think could have been caused by the steroids. My mouth dropped in shock. Surgery. A hole in my stomach. Holy cow!

To prepare for the operation, I had to undergo many indignities. Catheter insertion, NG tube shoved down my nose into my stomach, nose and anal swabs - all while I was awake. And they had to insert an IV. Since I couldn't eat nor drink properly for a few days and because I've been poked many, many times over the last few weeks because of the clinical trial, my veins were dehydrated and unhappy. They hid, collapsed and shrunk from the needle. As a result, it took three times to find a decent location for the IV.

When I woke from the surgery I had another shock, which in my anaesthesia-laced brain didn't process quickly (to which Michael and Angie can atest). They didn't find a hole in my duodenum (which is just below the stomach and before the small bowel) as they expected. But then again, they couldn't examine the underside because there are tumours there. They did find a 2L pocked of blocked-in infected fluid the pigtail couldn't reach. So they drained that, washed up my stomach, took out the pigtail, put in two new drains and sewed/stapled me back up.

I found out today when my family doc visited, the infected fluid could have killed me in a few days. That freaked out my overloaded brain. I started wondering if I did something wrong. Didn't I keep things clean enough? Was it my fault? Of course, ports get infected. It also let in a pocket of air that shouldn't have been in there. So I can't blame myself, but it makes me wonder.

We still don't know if there's a hole in my duodenum. What I do know is:, I'm really connected - and not in a good way. I have two new ports connected to drainage device, I'm tethered to a bag by my catheter. My stomach contents are being pumped from my NG tube into another bag. I have two IVs through which I'm getting antibiotics, steroids (go figure), drugs designed to shrink an ulcer and all my nutrition. I also have a four to six inch incision in my abdomen.

I can't eat or drink anything except for a few ice chips. They need to assess whether there's a hole in my abdomen. So they're watching my stomach contents for abnormalities and the ascities draining from my abdomen to ensure there's no stomach bile in it. So far, so good. And my temperature, blood pressure and heart rate have all returned to normal. My family doc said I looked good; my colour was normal and I seem to be doing well..

Physically I am doing really well. I can sit myself up and I went for a long walk around the ward this evening. Mentally and spiritually, the process is a bit slower. I'm extremely frustrated I'm tethered to a bed and can't do anything for myself. If it isn't within reach, I can't do it for myself. I can't even put cream on my own feet. I can't just get up and brush my teeth. I rely on someone else to help me get up, wash me, and get everything I need. I know it will get better and my loved ones don't mind helping me, but it's such a hard thing for me to accept.

To top it off, the IVs weren't working properly last night and I couldn't even move my arms for more than 10 seconds without setting off the alarms. In fact, one was so bad, it took nothing to set off the alarm on my machine. And when that happens, a nurse has to come and reset the monitor. So I had to lay in one position all night, with my arms lying straight down by my side. I could use my left hand in an extended position for very short periods of time. Frustration had my in tears most of the morning.

It didn't help Michael wasn't able to be here first thing this morning because of activities with the kids. Then he brought them here to visit, and while I was able to wash my face and brush my teeth with their help, I couldn't do much more. I also had to put on a braver face for them than I actually possessed this morning.

When they left - and they couldn't stay too long - I was stuck in my one position. I sat in my own sweat and stink, setting off my alarm monitors and cried. This afternoon, Michael and Angie helped me wash up and get out of bed for my walk. It's amazing how much more human you feel when you're clean.

The last plan I heard from the surgical team involves my swallowing some contrast on Monday to see if it makes it way into my abdomen. It it doesn't, no hole and I can't start to eat and drink again. Dr. P, my London oncologist stopped in to see me today. I told him about the clinical trial I'm on and that Dr. H from Hamilton has been contacted. Angie and Dr. H chatted on Friday. I've asked he be involved in the coordination of my care.

What I do know is I'm in the place I need to be right now - the hopsital. They're taking very good care of me. I'm sure lots of things will change in the next few days and I'll learn more about my condition and the plans moving forward. But my job right now is to focus on the immediate job of recovering from this abdominal surgery, then we'll to figure out what to do about my cancer treatment.

Back to the old one day at a time mantra.