Day + 15: Moving back home

From this picture, you can see that I am again at home, with Daisy laying on top of the sofa above my head. A pretty wonderful spot to be. My pass home yesterday was of course amazing, although I had a lot of nausea, significant fatigue and basically drifted in and out of sleep the entire day. My stomach is having a bit of difficulty adjusting to food again. It's par (more likely an eagle) for the post-transplant course and it was sure incredible to be home in my bed or on the sofa while feeling yucky.

This morning I checked back into the hospital and was pleased to see all my belongings had been removed from my room and were on a cart. That's the sign that you're too healthy to be taking up a bed on Unit 57, and they instead move you to 57B next door, where they have 4 day-beds in unassigned rooms used to transition inpatients to outpatients. I received some fluid, had bloodwork done, saw Dr. Chaudry and had my medications refilled. The pain in my abdomen is virtually gone, and my bloodcounts are all normal. The watch now is for Graft Versus Host Disease (GVHD), and he let me go home until Monday, pending any new developments in my symptoms. Hard to imagine that I'll spend the weekend home, although now that I've tasted the "good life" again, it's equally as hard to imagine going back to Hotel 57.

GVHD occurs because the new marrow recognizes the new body as foreign and tries to attack it. A similar thing happens when an organ is transplanted - the immune system recognizes the new organ as foreign, and tries to attack it. The difference with a bone marrow transplant is that you are transplanting the immune system itself, and therefore the entire body is foreign. Where and what is attacked is unlimited and unpredictable. In both cases, anti-rejection or immune suppressive drugs are administered to limit the strength of the immune system in its attack. Gradually, these drugs are reduced if possible as the new marrow is accepted. Acute GVHD occurs in the first three months post-transplant, and can be severe. Chronic GVHD shows up after the three-month point but up to several years post-transplant. Steroids are often administered to counter GVHD when it arises, especially if it is acute, but some chronic GVHD does remain forever. In my first two transplants, I had GVHD in various forms - liver, skin, eyes, GI tract, and tendons. Obviously, if GVHD hits the lungs, heart or other key organs, it can be extremely dangerous.

There's your lesson on GVHD! I did write the above paragraph purely from my eleven years of experience with transplants. Feel free to investigate more reliable sources! Basically, the doctors will monitor the levels of the anti-rejection drugs in my blood, consider any symptoms I have, and adjust the dose of those drugs accordingly.

Today I feel a little less nausea and am VERY excited to be at home for the weekend, knowing there is no room waiting for me back at the hospital. Since it's really the Canada Day weekend, and the red and white will be flying everywhere, consider it a tribute to all of you, who helped me arrive at this point. Enjoy the outdoors, your friends and family this weekend! Cheers... Tricia

Lucky Day + 13

I arrived at the hospital early this morning after a beautiful rest in my own bed last night. While I still have to get up 6-7 times during the night, it's nice to walk on my carpet to my own bathroom, without unplugging my pole, rolling it, replugging it in while trying not to cross my IV lines, not to mention not being interrupted at midnight and 4 AM for vital signs and blood work. Ah, the luxuries of sleeping in your bed without an IV pole.

After blood work and a few IV transfusions, Dr. Chaudry made his daily appearance at my door. My blood counts were really good - both my platelets and hemoglobin reached normal levels, and my white count was still hanging in the normal range as well. Remarkable. His examination of my abdomen indicated further improvement with the typhilitis. In his nonchalant manner, he said I could go home until Friday morning (unless pain increased, a fever arose, and about 10 other signs), and perhaps by Wednesday next week I'd be visiting the OUTPATIENT Bone Marrow Clinic. UNBELIEVABLE. It was less than a week ago that the word "typhilitis" even came up, and my neutrophils were 0.1. While the next three months are still a big unknown, it is nothing short of amazing where I am at today.

So I am sitting on the sofa posting this, after having a delicious meal of salmon, grilled vegetables and potatoes with mom and dad on the deck in our back yard. It was my first solid meal in 2 weeks, and quite a change from the liquids I had yesterday. Life is sure unpredictable. Cheers and thanks for the energy.

Day + 12 : Where's Tricia Antonini?

Well, a lot has happened since my last post. It's hard for me to believe, let alone report. Sunday night I didn't get a great sleep, probably because the hospital security system somehow started blaring "hold" music in the hallways at 4:30 AM and couldn't fix it for around half an hour! Anyway, Monday morning I thought the pain in my stomach was less, although the trips to the bathroom continued. I was able to get some pills down and my nurse unhooked my from my IV drugs to have a shower. When Dr. Chaudry came into my room, he looked around the room and said "where's Tricia Antonini?" in his joking way. I guess I looked a lot better than when he had seen my last Thursday. His examination of my abdomen definitely indicated the typhilitis inflammation was decreasing significantly. He told me to move to full fluid diet, and that if I wanted to go on a pass for a few hours in the evening, I could. Truly miraculous. I was able to rest on our sofa, watch TV with mom and play the Wii with Dad. Only 2 days after I was frightened by the good possibility I could be facing a dangerous surgery.

Last night at the hospital I slept a bit better (no hallway party music) and again felt a bit less pain and swelling. I had a cupful of pills this morning while eating oatmeal, the most solid thing I've had in weeks, and chatted with Tasha, who had stopped by after a hospital appointment she and Ryan had that morning. While the pill/oatmeal meal made me a little queasy and I had to rest again for a while, Dr. Chaudry opened my door for his daily examination. My blood counts also indicated that the new marrow had grafted and was starting to produce its own blood cells. My belly was a bit softer and the pain when he pushed the abdomen in various places was far less. He said as long as I could swallow all my medications by mouth, (my esophagus has a problem with swallowing and "over squeezes" things as they go down) I could go on an overnight pass.

It's hard to describe how I felt about the offer, as more than the enormous joy surrounding sleeping in my own bed, and hanging out with my family at home, it was an indication that I coming out of the dark woods. There is still a lot of risk and uncertainty about the coming weeks and months, depending on what Graft-Versus-Host-Disease(GVHD) arises (I'll explain that one later), and the typhilitis has to continue to heal, but it sure is good to be home on a pass on Day +12. So rest your Red and White fury, and pick any colour you like! Thanks everyone for helping me get here.

Day + 10 : Less Pain and Hair

Today was a better day. That's really nice to report. While I didn't have a great sleep again, and woke up with a headache, I did feel like I had a little less pain as well as bloating in my stomach and abdomen. I also had my favourite nurse Melanie on, and she unhooked me after my half-dozen morning infusions and I showered before 12 noon - quite a feat. She also told me my white counts had gone "kinda crazy", likely due to the G-shots kicking in, and that my neutrophils were 12.2. Yes, that's 12.2. They will definitely go down tomorrow as I didn't receive a G-shot today, but it's a pretty nice response. Go Red and White.

I was able to walk a few laps slowly around the nursing station with mom early in the day, and didn't think it was as painful. Then the doctor examined me and pressed on my abdomen as they do everyday and she was quite happy with the reduction in my pain reaction as well as the increased softness of my belly. I was able to walk again with Dad later in the day and even walk outside for a few minutes. Glorious to smell the flowers and feel the sunshine on my head. Oh yeah, Mel shaved my head today as my hair started falling out a lot yesterday. I had some nausea this evening when mom came up but I managed to walk again for a few laps before sitting down to post.

My normal team of doctors will be back tomorrow and I hope they will be pleased with today's progress. I am definitely not out of the woods with the typhilitis but hope that today put me a little further away from the heavy dark centre of the forest. Since it was such a good day and everyone has been working so hard on sending me good energy, I thought I'd try to post a very short video of me with my new hairdo. In case your computer won't play it, I've posted a picture too. I'm going to bed now in hope of a solid rest and more work tomorrow. Again, endless thanks to all.

Day + 9 A Long Day

It's late and it's been quite a day so this will be short. Last night I didn't have a very good sleep. The docs scheduled me for a CT of the abdomen yesterday, so I had to quit drinking anything (which was just clear fluids anyway) until the CT department called and then I had to drink prep fluid (lots) for 2 hours prior to the scan. Unfortunately, it was only this morning that I got in to CT due to volume. Anyway, when I woke up after coming back from CT, the doctor had results and it confirmed not only that I have typhilitis but that it is extensive (not just at the meeting point of the small and large intestines) and it is severe. They will be consulting with infectious disease doctors and watching it for a few days before considering consulting the surgeons as well. I am already on 2 antibiotics to help control the typhilitis, but really to possibly heal I need my immune system to do that. The very good news is that since I reported last, mostly over last night, my neutrophils went to 2.2 from 0.2, which is an amazing thing. I need them to continue climbing to help prevent the thyphilitis from advancing. I know that jump was helped by the Red and White love I have been receiving over the past days. Please keep it up...but don't feel you have to buy a new wardrobe of red and white!

Day + 7 Perspective

Interesting how perspective changes so quickly. I was kind of happy that my activity in the bathroom slowed slightly overnight - 1.5 hours between visits rather than 45 minutes. However, the tenderness in my abdomen had increased to pain, and when my doctor examined me, we realized the pain was worse on one side. He indicated that it may be signs of early typhilitis, an inflammation of the intestines where the large intestine meets the small intestine. It is a bad thing to have with low neutriphils - mine were 0.1 today and the normal range is 2.5-7.5. I was sent for more Xrays and the docs increased my antibiotics, as well limiting me to clear fluids only (I was only on full fluids for a day or so since last week anyway).

Suddenly the idea of constant diarrhea for another week seemed pretty wonderful, if I could skip the typhilitis. It was a rough day mentally, and my hope now is that the neutriphils start kicking upward as soon as possible. I at least managed enough strength to shower this evening, so that was positive. Another half hour and I'll konk out and hopefully get some more rest! Again, thanks for the wishes...if you wish/pray/meditate in colour, think red and white...those are the colours of the small and large intestine in my Qi Gong work...:)

Day + 6: A Change of Scenery

I'm likely going to fall asleep any moment, so I thought I'd make a quick effort to update you. My stomach woes have continued and become more frequent; the doctors started me on an antibiotic today just to be cautious, as I also have increased pain in my abdomen. I received another shot of G yesterday and today, and the doctors are pleased with where my white counts are (low). I received another transfusion of platelets today again as they were heading south. Overall, I'm handling the hassle of my stomach issues pretty well, but I am getting pretty exhausted.

Due to a faulty sink in my room and the risk that any renovation/construction pose for someone with no infection-fighting neutriphils, I had to move to a different room today. Luckily for me, mom and dad were up at that time, and between the patient care assistants and them, the move was relatively smooth. So now I have a different view, of the river and downtown. Always nice to have a change. It's also a little quieter down this hallway, so perhaps I'll get some rest, which I desperately need.

While I didn't post yesterday, it was very nice to get comments and guestbook entries from everyone. It does give me a boost to see my red light flashing on my blackberry and makes me feel not so isolated! Cheers - enjoy your day and appreciate every normal bowel movement you have!

Day + 4 A Little Relief

The stomach troubles are still ongoing, but perhaps the pace has eased a bit. I feel a bit better than yesterday, so that is great. My counts are bottoming out, so I had a platelet transfusion today, as the risk of bleeding is very high. Uncle Ed, with his weekly donations of platelets, would appreciate that one! The doctors also gave me a shot of GCSF, the same concoction my brother received last week, to try to help my very brand new marrow gain speed. The quicker my white count can recover, the lower the risk of complicated infections. My doctors are being pretty cautious.

The one bonus to being in bed or bathroom the past few days is that I caught all 5 days of the US Open. Perhaps the unending focus of Tiger or the laid-back attitude of Rocco has given me a little boost. Or maybe it's the unending supply of energy and prayers you have been sending. Or all of it likely. That's the way the world works! I'm just enjoying this time of feeling not half bad...I'm even wearing jeans to prove it. Cheers.

Days +2,3 Continued Yuck

Not much to report. More issues with my stomach/bowels during the night, an X-Ray of my abdomen, and fluids. The first results showed no infection, but they're running that again now and a few other tests to help rule out some larger problems. I've had a few hours here and there over the past couple days where I felt okay, so I can't complain too much. We'll see what the next few days bring...thanks again for all your wishes. I can still look at my blackberry from bed!

Day +1 Yuck

So every day can't be a excellent day. Since last night returning to the unit, I have not felt well in a number of ways. I'm waiting on a culture from the lab to tell whether I have an infection or if it is simply the effect of the drugs I am on. Just now was the first time I had a few minutes that I didn't have to lie down or hang out in the bathroom, so I wanted to quickly post. Hopefully tomorrow I'll feel more like talking!

Day 0: The Cells are In

I never imagined I'd be sitting on my couch at home posting on Day 0. This morning's infusion started around 9:30 am, when the nurses brought in the familiar bag of my brother's cells from yesterday. To avoid a reaction, they give Benadryl prior to infusion, and that pretty much knocked me out so I slept through the infusion. Apparently it went smoothly and my vital signs did not change from the beginning to end. I slept until around 2:00 pm this afternoon, when I was told that I could go out on pass for a few hours if I felt like it. I'm still pretty "swacked" from this morning, and now have 0.1 white counts, so dozing to the U.S. Open is about the excitement I'm experiencing. But it is exciting.

I'll probably fall asleep typing any more, so I'll keep this one short. The cells are in, thanks for the support, now the waiting begins!

Day -1 My brother's day

I have a day off chemo before tomorrow's infusion of his cells, so I just have some immune suppression drugs starting today, a lot lighter than other days. My counts have plummeted to 0.2 white count, which is expected but always a little scary, and my liver function tests have continued to fall, still abnormal, but heading in the right direction.

Really, today is all about my brother and his amazing donation for me. So I managed to take my pump and breakfast down a floor to where he was getting hooked up to the apherisis machine. He had a catheter inserted into his jugular vein, and I can tell you it's not pretty...luckily for him the position it is in does not allow him to see it! They were just starting to draw the blood out and run it through the spinning machine when I arrived. It's a pretty amazing process that separates the extra stem cells floating in his blood from the other parts of his blood, all based on a tiny difference in the weight of those cells. The remaining blood is circulated back into his veins. To collect enough of the cells, the process takes around 6 hours usually, before they will close up the incision made in his neck and let him go.




Of course, my crazy brother was able to continue doing mortgage deals, all through his blackberry! It probably helps him pass the time and takes away some of the discomfort and pain he has in his neck and when swallowing. He's pretty tough! He also said the bone pain he's been feeling the past couple of days is already subsiding, so it shows his body is doing the right things.



I'll probably pop down and see him again shortly and make sure he's doing okay, and how the cells are collecting....get a picture of what I'll get in me tomorrow! Thanks for all the wishes for us both...it certainly helps to have the support and energy flowing.

Day -2: Last day of conditioning chemo!

I'm just waiting for my last dose of Melphalan, chewing on ice to try to limit the bloodflow to my mouth to minimize mouth sores. The ice therapy goes for another six hours so I should be freezing cold by end of day! My blood counts plummeted today (as expected) - I have only 1.1 white count (normal is 4.0 - 10.0) so infections begin to be the big risk, and the bacteria in my mouth will no longer be fought by the white count. It's all the normal course of the transplant process. My sleep has still been sporadic with all the hydration I am receiving, but at least the showering is done, so fatigue is my m All in all, everything is better than I expected. My brother's last shot of GCSF was this morning, and so his collection begins tomorrow. He just stopped by as my Melphalan got started. I'm off again to the washroom and freezing my mouth.

Day - 3: ALT recovery and washroom craziness

A short post as I only last about 10 minutes between bathroom visits right now! Melphalan requires loads of hydration and bladder medications to try to flush the drug out without too much damage to the bladder. I am also still doing showering for the Thiotepa from yesterday and sucking on ice for the next 6 hours (to avoid blood flow to the mouth for massive mouth sores) so it's BUSY! Little sleep last night as well between all the bathroom visits with my IV pole and showering, redoing my central line dressings, bloodwork, etc. Hopefully I can get in some rest after the super-hydration period is over. The (VERY) good news is that my ALT was actually LOWER than yesterday, down to just above 2 times the upper normal limit. Quite incredible. Anyway, good work for everyone and I gotta run again to the washroom!

Day - 4: Garlic, Lemon and Laundry

Well I am about an hour away from finishing the Thiotepa infusion. My liver function test yesterday had jumped pretty high, so the doctors consulted with the trial doctor in NYC. While my ALT (Alanine Transaminase) was over 3 times the maximum normal, they decided to continue with the chemo as planned. Apparently the other trial patients experienced even higher ALTs while in the conditioning phase. My forecast for today's ALT based on a trend analysis I did (yes, I used a spreadsheet) ended up being higher than the actual increase today, so that's positive. Maybe it was all the roasted garlic and lemon water I was guzzling over the past 2 days. Or the Qi Gong meditations for the liver...whatever, I'm happy it came in below my expectation. Only 3 more days of chemo to go and then it can take a bit of a rest.

I'll be showering after the infusion and then every 6 hours for the next 24 hours even through the night (so no more overnight passes). They also change my sheets and I have to change my clothes each 6 hour interval and not wear any creams, jewellery or tapes on my central line, as the Thiotepa excretes through the pores and can cause skin blistering. Talk about laundry! Otherwise I am feeling pretty good - fatigue and minor aching is about all I can complain about. Way better than I expected again. Keep that positive energy coming - you're certainly helping me!

My Protector

It's Day - 5 and I expect to get Clofarabine in around an hour. Unfortunately my liver functions have started to climb more quickly than I hoped, so the doctors are going to have to decide what to do with the planned chemo. The bloodwork I just had drawn a few minutes ago will help determine that. In the meantime, I continued to feel just a bit more tired but managed yet another pass last night, which is fantastic.

Today is the first of four days my brother receives GCSF, the growth factor that causes his bone marrow to overproduce stem-cells, to enable collection on the 11th. So I dedicate this posting to him for his continued effort to protect me from harm.

My brother is intelligent, hard-working and handsome. He has a photographic memory that always made me envious in high-school and university.  He loves being a father to Jack and Davis and is a dedicated husband to Dana. We have always been good friends. He is a natural communicator and businessman. He loves animals, especially minature schnauzers, and is very compassionate. He takes on way more than he should but is successful. He tells stories and describes people in a way that always makes you bust a gut laughing. He loves Froot Loops and still holds three provincial swimming records set over 20 years ago. He has always protected me and would beat the crap out of anyone who tried to hurt me. Including leukemia. In a few days he'll donate his bone marrow again for me. I love him so much.

Winning Streak (Day - 6)

Day -7 was pretty similar to Day -8 with perhaps a little more fatigue. After bloodwork, clofarabine infusion and a check by Dr. Chaudry, I was on my way home again last night! I even did a long walk last night as it was beautiful outside. I'm soooo grateful for each extra day I get to sleep at home and can hardly imagine it's Friday and I haven't slept here yet. My pass streak will certainly end this weekend, as the next drug on the list (on Sunday) requires me to shower, change linens and clothes every 6 hours. Thiotepa is excreted through the pores and will burn the skin if these precautions are not taken. I'll also be getting more IV hydration when I get to days -4, -3 and -2, so heading home will not be an option. I'm pretty happy with how many days I've gone so far though!

My blood counts yesterday included one slightly elevated liver function test (ALT), one which I have monitored over the past year and a half. While it's not a concern of the treatment team just yet, I will be very curious to see what the counts do today. Clof is hard on the liver, so it's not surprising the ALT is starting to rise - I am simply trying to project how fast and high it may go up...not as easy as financial projections!

For now, we'll see if I can manage one more overnight pass!

Lucky Day - 7

So far so good. Aside from being tired with a mild headache, Clof and I are getting along famously so far (it's the NYC connection). I was able to get another pass overnight yesterday, and even managed to stop by to see Davis and Jack on their actual birthday. The Unit 57 physiotherapist came by yesterday to go through all the (pages and pages) exercises I am to do, but the running around after the 2-year old twins in the backyard sun last night was far more interesting and effective!

I've included another photo today, and thought I'd show you what my real hair looks like, before it falls out next week! It's thickened up a bit since I've had a short break from chemo in the past couple months, but I had it cut nice and short so it's easier when it falls out. I am getting my third dose of Clofarabine right now, and will hope to continue feeling well for at least another day...we'll see!

Sunny Day -8

A quick note just to let you know that Day -9 went very well. My infusion of Clofarabine was fairly uneventful. I saw the doctors, had my top stitch on my central line removed and was given an overnight pass - awesome to sleep in my own bed for another night! I'm back in my room at 57 now, so we'll see what my blood counts are and how I feel after round 2 with Clof...maybe I can manage another overnight pass! Thanks for all the messages, prayers and energy - I feel great!

Boys and Girls

Well I am checked in to Hotel 57. My room is just being re-cleaned, so I'm sitting in the "lounge" and thought I'd do a quick post.

This past Saturday, Tasha and I planned to head to Banff for the night, to have lunch, shop, see Sex in the City and chill out at a great hotel. Like everything we do lately, plans had to be adjusted! We had a great drive out, blaring tunes and laughing, until about 20 minutes outside of Banff, when Tasha started to feel unwell. She didn't get any better once we arrived and it seemed her symptoms were similar to the allergic reactions she's experienced on the chemo she's currently on. We ended up spending the afternoon at the Mineral Springs Hospital in Banff, and luckily Tasha was eventually cleared to return home, so we drove back to Calgary around dinner-time. Besides the exhausting and scary time in the hospital, Tasha was also a little ticked that our "girls weekend" was aborted and that our Sex in the City tickets would go unused. So, as Tasha does with everything, she had to come up with an alternative and purchased tickets to the show online for Sunday night, and included my mom in the fun! We had a great time, dressed up a bit and got the prime seats in the house while we watched my favourite city on the big screen and Carrie, Miranda, Charlotte and Samantha with great clothes, shoes and fun. The energy in the theatre was awesome, with everyone cheering when the previews were over and the ever-familiar theme music coming on, to the applause at the end of the show. It's how we should approach every day, with the absolute hope and excitement that the day will be awesome, followed by applause at the end!

Sunday morning and afternoon was for the boys...Davis and Jack turned 2 and actually celebrated! They were enthralled by their new bubble lawnmowers, and laughed and danced to the Wiggles until they finally passed out.

They had me up dancing and playing guitar (even while I ate - no break for the band) and it was another great source of energy before admission to the hospital yesterday. In between the party and the movie, I was happy to have a quick visit with my aunt Marcia from Victoria/California and aunt Mary Ellen for some more positive energy!

Yesterday I officially got my hospital wristband, and while I've been doing this post I've had an ECG, bloodwork, vital signs done and anti-nausea meds. It's not quite 8:30 AM - at 9:00 am I start the first infusion of Clofarabine, a long-awaited first meeting of a friend of mine that I first met in New York City (or at least that's how I see it). We'll see how Clof and I get along...I'll keep you posted.