The real meaning of Christmas

I can't believe it's almost Christmas. The past three weeks have been a whirlwind, filled with absolutely amazing and unbearably terrible moments. Life continues to surprise me.

Let's start with some good moments. The weekend of December 6th, Dad made an Antonini tradition - gnocchi - for Tasha, Ryan, Talyn, my brother, Dana, Jack and Davis. The little boys even had their own "kids table". It was a great visit with lots of pasta. The following day mom, dad and I were treated to a pre-Christmas Christmas dinner at Mary Ellen's, with Bob, Marty and Karen. Mary Ellen LOVES Christmas and her decorations are remarkable - her dinner is amazing as well...so is she!

I made it to Day +180 on December 9th and had bloodwork and a number of tests. Wednesday I had another bone marrow aspirate, and Friday the 12th I had my central line removed with only a few stitches remaining on my chest. Aside from a bit of a cold that week, it was a pretty healthy 6-month marker from transplant. It is still hard for me to believe that I feel as good as I do.

As I was leaving the hospital, I looked at my blackberry and noticed a number of text messages from Tasha and quickly I circled back into the hospital parkade. As many of you may have already read on Ryan's blog, he had 3 major seizures while waiting for his radiotherapy treatment at the hospital. When I met Tasha in emergency, Ryan was paralyzed on his right side, on oxygen, could not speak, and had some vision loss. A CT scan confirmed that there was swelling in his brain around the tumour, caused by the radiotherapy treatments, and that had caused the seizures. Check out Ryan and Tasha's blogs (see the links on the upper left hand side bar) for the full story.

I spent a lot of the next few days at the hospital and arranging for someone to look after Talyn. It amazed me to see the incredible improvement in Ryan each day that I saw him...getting back the ability to move his right side, speech improvements, sight, overall awareness. By Monday he was back to his wide-grinned self and I was really in awe. The physical roller coaster he experienced was matched by an emotional one, having to deal with the real fear that he would never see his wife and son again, and even after bouncing back considerably, realizing the possibility that the tumour could be beating him. Despite this, he was able to take it in and then move forward. He restarted radiotherapy treatments Thursday, well aware that he could repeat the horribleness he had just recovered from, but knowing treatment is his only chance.

Ryan's current radiotherapy treatments are not expected to get rid of the tumour, but hopefully have a positive affect on it. Following the radiotherapy, the doctors suggest only one other option - chemotherapy combined with a drug to make the chemotherapy more effective and precise. Unfortunately, that drug is still in clinical trial stage for brain cancer, and is not covered by Alberta Health - it will cost $4800 every 2 weeks for a period of 6 - 12 months. No one has $10,000 a month, and given Tasha and Ryan's scattered ability to work over the past few years while Tasha did surgery, radiation and chemo and Ryan did chemo as well, they certainly don't.

On the very day that Ryan had his seizure, a group of friends met to discuss how to help Ryan pay for the treatment, and since then it's been a flurry of media attention covering the story and some amazing response by people. I've been the "media rep" and have been able to experience first-had giving of an indescribable level.

In the middle of all of this, I was able to make it to the PwC Christmas Party and visit with coworkers and friends (wearing a dress without CVC tubes to tuck in!). The Survivor finale did not disappoint and watching it with my fellow Survivor Chicks was as entertaining as always. I've also managed to put a few things aside to prepare for my upcoming escape from the deep freezer weather on the 31st to Maui with mom and dad! Can't wait!

This past Sunday we had brunch with Dana and Brandon and Jack and Davis opened their gifts from "Nana, Papa and Auntie Tricia". It was quite exciting and they immediately had fun with their new sets of golf clubs - they have perfected their swing and even comment when they just barely miss the plastic holes "almost". We feel their names are destined for PGA greatness given the successes of Jack Nicklaus and Davis Love III. Of course, they also loved their new blankets as they need rest for the tour!

Right now I am excited for the arrival of Colleen, Allan, Grady and Joelle later tonight and a wonderful Christmas. Earlier tonight, I witnessed one of the purest form of giving I've ever seen (and remember I've received donations of bone marrow from by brother and a stranger)...a local business man in Calgary, a perfect stranger, saw the story in the paper and came to Tasha and Ryan's house to give them a cheque for $60,000 to cover Ryan's treatment for 6 months. While he says he's "blessed to have had success and is in a position to help" I pointed out to him that many people are in that position but do not take action like he did. He doesn't even get a tax receipt! He and his wife are undoubtedly some of the nicest, most genuine people I've every met and it truly has changed the way I feel about humankind in general. Talk about giving. Talk about Christmas. And I am alive and healthy enough to witness it. Many many miracles.

I wish all of you a Merry Christmas filled with good food, good health and good company, and thank you again for all of your continued support. For 2009 I wish you joy, hope, health and happiness.

Cheers to all!

Tricia

Day + 169 Ups and a Down

In general, my own life has continued on an upward spin. I've entered back into the social scene, attending a fantastic surprise birthday party on a Saturday a couple weeks ago for my friend Linda and hanging out with new and old friends. The next day I had brunch with some relatives Art & Marlene, who I hadn't seen post-transplant. Later in the day I was entertained by almost 2-year old Alex while having dinner with good friends Doug and Michelle.

Even my personal trainer has recognized my improved strength and energy, and has kicked my workout up a notch, a sure indication things are looking up.

Things turned a little downward a day or so later, when I talked to Ryan and Tasha following Ryan's appointment to review his recent MRI. His brain tumour showed quite significant growth since the previous one in September and accordingly the plan for treatment had to be revisited by the board of doctors the following day before proceeding. It is incredibly unfair the number of times their family has had to deal with the roller coaster of cancer and I was so disappointed at the latest turn. Ryan has started a blog for his own story - please see his link on the upper right hand side if you'd like to follow it. Of course, Ryan and Tasha have been working non-stop since the MRI to look at all possible options and ways to fight - they are relentless and I continue to be inspired by their attitude to beat the odds and live life fully all at the same time.

In early November, I talked to one my oldest friends (our mothers were friends) Shelley and decided that it was time for a visit to Montreal to see her...I flew in last Wednesday night and stayed until Sunday evening. I love Montreal and was happy to explore downtown and the shops while Shelley worked (she teaches at McGill) and then enjoy bistros, tapas bars, movies and visiting with her friends in the evening and on the weekend. While I didn't think of the Grey Cup when booking the flights, it was interesting to see the various jersey-clad people around town and then watch the last moments of the game from the boarding room at the airport. The Stamps win and the joy of the passengers was consistent with the remainder of the weekend - awesome!

This week I made a couple of key appearances at some PwC events and meetings, to ease my transition plan to return to work in March. I just wanted to show my face to remind people who I was and meet some of the new faces that have arrived since my departure to New York three years ago. It was surprising to me how easy it was to rejoin the group, as well as how many people I still knew. PwC continues to be a good source of positive energy for me, and I am excited to be able to recover some of that soon. You hear right, I'm excited about working!

Just a day ago, I was able to babysit Jack and Davis for an evening with Mom, and was fully entertained by their latest sentences and ideas. "Ready or not, here I come" was followed by me crouching behind the kitchen island while Jack walked around calling "Trish?" until he discovered my hiding spot and laughed his guts out. "Again?" is another favourite. Davis pulled out all the stops with his guitar moves while dancing to the latest Wiggles tunes and had Mom, Jack and I dive under a small table to take cover from unknown "noises" upstairs!

Other than bloodwork and some medication appointments, things have been pleasantly quiet on my health front. The week of December 9th (Day +180) will include a bone density test, pulmonary function test, bloodwork, doctor visit, bone marrow aspirate and the removal of my central line. A fair bit of stuff. However, I plan to offset that by celebrating at the PwC Christmas party sans-CVC and watching the Survivor Gabon finale with my fellow Survivor PowerChicks. Of course, Christmas with family will follow quickly, as well as the excitement of spending a few weeks in Maui starting December 31st.

Are you ready for the holidays? I can't wait.

Day + 154: Worth it

I feel torn whenever I visit my Grandma Gunn, who only 3 years ago lived independently, sparkled at her 80th birthday party, and travelled on her own with ease. She took care of me several times during my battle with leukemia and has always been a good friend to me. Now, since her second stroke, she is unable to speak, eat or walk, and yet she has not lost the majority of her mental abilities. It's an unfair trap to live in and certainly she deserves more. The visits she enjoys from Colleen and her family every couple of days and from the rest of us a little less frequently obviously fuel her and she is generally quite positive despite her situation, confirming again to me what powerful roles mind and spirit play in assisting the body. However, I do wonder if the moments she cherishes can truly offset the remainder of her day. It's a struggle I realize so many people must deal with. In the end, I guess I think of Grandma's own words that I came across recently reading her travel journal from a trip to Germany in 1979-1980. She and her daughter Colleen went to visit her son Bob who was in the army and had an amazing time touring Europe. Her last entry talked of the dreaded trip home - a long flight to Victoria, with several delays, 6 inches of snow on arrival and 4 days of jet lag. Her final words in the journal were "But worth it".

My acting teacher always referred to Sanford Meisner's quote "an ounce of behaviour is worth a pound of words" when trying to relay that you need not say anything to communicate to your audience. I certainly saw this theory in action when I observed my Grandma Gunn meet my 2 and 1/2 year-old twin nephews Jack and Davis for the first time in Vancouver. Her ability to speak was virtually stolen from her a couple of years ago, yet her eyes and expression said it all. Initially overwhelmed by the nine of us (two daughters, four grandchildren, granddaughter-in-law and two great-grandsons), it took very little time for her to express the joy of meeting Jack and Davis and having her family surround her. The little boys tickled great-grandma and she rewarded them with smiles. I definitely think she thought it was worth it.

The weekend in Vancouver was definitely a success and I enjoyed spending time with my cousins Grady(12) and Joelle (7) - Joelle and I trick-or-treated on Halloween and I can tell you that kids growing up in her neighborhood earn their candy! I would not have been able to handle the incline on the route a couple of months ago, but I managed to keep up! Grady is now a true entrepreneur and I reviewed his flyer route invoices with admiration. I'm also thrilled that Colleen, Allan, Grady and Joelle are coming to spend Christmas with us in Calgary! I'll have to brush up on my Wii skills.

Last weekend mom, dad and I made a quick road trip to Fort Macleod to visit my uncle and aunt, Bob and Heather and check out their new abode. They built a beautiful house just outside the town along a river, and in the past month acquired a horse named Lacy. A beautiful Palomino, Lacy was as friendly as a dog and even nudged my back while I tried to make room on my camera for pictures. It was a great visit (with both the people and animals) and we plan to return soon.

In the spirit of my new book, I really had very few health-related appointments in the past couple of weeks. I managed to see Tasha, Ryan and Talyn as well as some of their friends for some much needed catch-up and even some new Singstar! It is always energizing to be with people who are so positive, regardless of what challenges exist in their lives. I also had some entertaining lunches with a number of friends, continued to build my strength at the gym, and even started the administrative process to return to work at PwC possibly in March 2009. Life is starting to look and feel a lot more like it should.

Yesterday I was at the clinic for bloodwork and a visit with Dr. Brown - a "visit" mainly because there was really not a lot to report from the medical side of things. We made plans for next month's visit at day +180 (December 9th), including another bone marrow aspirate as well as the removal of my Central Veneous Catheter from my chest. The CVC removal will be perfectly timed as I am attending PwC's Christmas party the following day and will be happy not to have to hide all that hardware in a dress! As well, I will begin a very slow taper off of my anti-rejection drugs on day +180 as well.

To express how amazed, wonderful and grateful I feel about my life today is impossible. As grandma would say, it's worth it.

Day +138 A new book

It's hard to believe the end of October is almost here. I continue to feel better and better and have been able to move forward with the new story of my life. While my previous book had endless chapters and resembled one of the Lord of the Rings epics, the plan for my next book is one that will likely not sell thousands of copies but to me is very exciting - plain, simple, uneventful life. Brilliant.

My visit to the clinic a couple of weeks ago again indicated my numbers are rolling along nicely. The detailed results of the aspirate I had at Day +100 were normal. I have bloodwork tomorrow but don't have to see the doctor at the clinic for another 2 weeks.

As my health inched closer to the "normal" end of the range, I decided it was time to see my friend Dr. Aung in Edmonton for a tune up. Amazingly, he fit me in to his packed schedule and I drove up last Tuesday afternoon to see him, stayed overnight and then saw him again before heading back Wednesday morning. It was wonderful to see him as usual, and equally wonderful to stay with my cousin Amy and catch up on some visiting. I lived with Amy and her mom in Regina while finishing my degree after mom and dad had moved to Calgary, so she's like my little sister. She had just returned from spending a year in London with her husband Ryland so we had a lot to catch up on. It was a quick but very full and satisfying trip.

With the health front becoming less time-intensive, I managed to keep my schedule busy by assisting Tasha with her fundraiser for Rethinkbreastcancer - the Rethink Romp! I helped put together some of the donations her committee had received for the silent auction and then last Thursday volunteered at the event. It was a totally amazing event - they sold out before the event began, and the music and atmosphere was very funky. Some of my friends from the old LLS board were able to come out as well! Tasha's efforts with her small team of committee members resulted in huge success, raising nearly twice the funds they had expected as well as expanding awareness for young breast cancer patients. I was thrilled to witness such amazing energy!

After Thursday's social scene, I gathered enough energy to make it to the girls' poker night Friday and see some of my PwC friends. Saturday was an annual Halloween bash hosted by my PwC friend Shannon - I worked for Shannon over the years and she has endless energy. Her decorations and games are always extensive and the costumes by both adults and kids are always impressive. (L-R The witch and her dog, Sumo's pants are falling down, Shannon's husband "Beetlejuice" Jeff)

When it rains it pours! Last week while heading to and from Edmonton, volunteering at the Romp, playing poker and being witchy, mom and dad were babysitting Jack and Davis while their parents were in Mexico for 4 days. The boys are getting so big now and say so much - quite hilarious. I got to play, dance and hang out in between all of my events, with my favourite little men (Jack L Davis R)

After a couple of days of rest following my social flurry, I am ready to roll again. I have a few lunches planned this week in between a couple appointments and bloodwork and then Friday I'll fly to Vancouver. Jack and Davis are going with their parents to meet their great-grandma Gunn, and mom and I didn't want to miss the look on her face when they slide into her nursing home for the first time. While she won't be able to say anything, I imagine her expression will speak volumes. I'm also going to relive my childhood and go trick or treating with my cousins Joelle and Grady... I can't wait.

Cheers and Happy Halloween! Tricia

Day + 120 A New Chapter

As always, my friend NYC gave me the gift of renewed energy.


Mom and I hit the streets of Manhattan within an hour of arriving a week ago last Thursday and were not disappointed. We met up with several old friends at Elaine's, a restaurant that was like my second home when I lived in New York a few years ago. I call Elaine's "my portal to the world" for all the connections with people I have made there and the interesting paths that have emerged from there.


During our days in NYC, we met with a number of old friends from my Manhattan life - my Elaine's family, previous coworkers on the PwC project I worked on, and fellow actors from the theatre company I was in. It was energizing to see everyone, and all were amazed by how well I appeared. I was able to walk blocks and blocks of uneven pavement in Soho, the West Village, Greenwich Village, Midtown, Uptown and even Harlem (at Rao's restaurant!)without becoming short of breath. It was definitely as though no time had passed since my visit a year ago.

We treated ourselves to an amazing performance by John Lithgow, Diane Wiest and Katie Holmes in Arthur Miller's All My Sons on Broadway, as well as to an off-off-Broadway production featuring my prior theatre company member Lauren. We (window) shopped at Bloomindales, Saks Fifth Avenue and Barney's. And we rested often in our hotel!


Of course, the primary reason for heading to the Big Apple was to show the doctors at Sloan Kettering their "product". I met with Dr. Young last Monday and he was quite impressed with the results, as well as everything I was able to do while in New York. And while he realizes my results are exceptional, he wasn't terribly surprised with how I looked and felt - he even asked me if I was back to swimming yet. It was a humorous confirmation that he has confidence in my ability to be an exception to the statistics, and that in itself was worth the trip to NYC. While I had moments during the week of slight sadness for the New York life I once led and lost so suddenly, most of the time I celebrated the city that still manages to give me energy, and the city that led me to my most recent treatment option.

Returning late Wednesday, I was back to physio Thursday and in for Day +120 bloodwork yesterday. Later today I'll visit with some aunts, uncles and cousins and tomorrow have a Thanksgiving dinner. My list of things to be thankful for is very long and includes thousands of names. It is perfect timing to reflect on the past 11+ years, be so appreciative, and move on to a totally different chapter of life.

Have a wonderful Thanksgiving. Cheers.

Day +100 Fall Festivity

A week ago Monday I realized for the first time in months, I did not have to go into the clinic on Wednesday for bloodwork (a sure sign of improvement). Dad was driving to Regina Tuesday for a golf tournament Wednesday, so I decided to hop in the car with him and take a road trip!




I managed to get in a lot of visiting in one day - many cousins, a few aunts and uncles and even some familiar faces I ran in to along the way. Ellen (my mom's cousin who I lived with briefly in Regina years ago) also took me to a few shops I'd never been to. Dad and I had a lot of fun on the ride there and back, creating games that made the time fly. Overall it was a really nice unexpected change of scenery. I forgot to take pictures of course, until the ride home when I realized I had my camera - here's an "old friend" who got stuck in the hood!

My energy has continued to improve and last Friday I even played a few hands of poker with some of the PwC girls. Saturday I attended my PwC "coach"'s annual "I Survived Shannon" party and Sunday had Jack, Davis and Dana came over (Daddy was out of town). I was having moments of deja vu of my former life!

The busy schedule continued this week. Monday included physio, lunch with a friend and speaking for an hour to a class of nursing students at Mount Royal. Every time I tell my story (which is so long I now use Powerpoint) where some benefit is taken from the audience, it energizes me. Tuesday morning I had a significant and interesting visit at the hospital with Deacon Frank, a volunteer with Pastoral Services that has known me since 1997 when this journey began. In the afternoon I saw an eye specialist for a post-transplant exam - I now have drops but otherwise things look okay. Wednesday I had a CT of my chest followed by bloodwork, a visit with Dr. Brown, and then my Day 100 bone marrow aspirate. All went well, except for a bizarre reaction I had later than night (it resolved by the next night). I should get results of the tests in the coming weeks. I also managed to catch a cold, so I'm hoping my new immune system knows what to do. Overall I continue to feel improvement in strength and stamina - which obviously allowed me to do everything I did in the last 2 weeks!


On a less exciting note, some of you know Tasha and her husband's roller coaster took an unwelcome drop last week when Ryan's MRI showed his brain tumour to be considerably larger than the MRI 2 months ago. He is scheduled for a number of tests in the coming week to determine treatment options and strategy, and they are both summoning more strength to get into fight mode yet again. Some more positive news from their corner...Tasha's article came out in the October issue of Flare this week - I understand it hits Calgary newsstands Tuesday. Tasha is also leading a committee that will host a unique and hip event in Calgary for Rethink Breast Cancer on October 23rd, 2008. I'll definitely be there! If you want tickets you can buy them online at www.rethinkbreastcancer.com


Speaking of events, I wanted to let you know I won't be attending the Light the Night walk by Leukemia & Lymphoma Society this year in Calgary. The distance is a little beyond my reach. As well, I have not been involved with the local chapter since last February when the volunteer chapter board was disbanded and my role as co-chair was no longer available. I understand many of "Tricia's Trotters" will be walking, in Vancouver and Calgary, and I cheer you on in spirit! The Society is doing excellent work in patient services and moving research toward a cure.

As I've successfully reached day 100 on both paper and in my quality of life, I am happy to report I'll be visiting the team of doctors in charge of the clinical trial from Memorial Sloan Kettering in NYC to show them their "product". October 2nd Mom and I will visit New York again and meet with the MSK doctors. They have been in constant communication with Dr. Brown and the team here at Tom Baker throughout the past year, and are pleased with the results they have been forwarded "on paper" to date. I'll be excited to show them the "off paper" success of their experiment so far.

It's been two weeks since my last post. Calgary has been warm and the leaves on the green trees have been changing into gorgeous rust, orange and yellow colours. Change is in the air, and I'm so grateful I feel tangible, positive changes in my mind, body and spirit. I love Fall.

The Corner: Day +88

The body sure is amazing. The small improvements I mentioned in my last post have continued to increase rapidly. In the past 8-9 days, I have "turned the corner" so clearly I could almost see the corner, although I have no idea what the turn-factor was. My shortness of breath, ability to drink and eat and overall energy has improved dramatically. Even my hands shakiness has reduced so much I can wear mascara again! (A nice treat when you are a bald pale skin, pale eyed girl!) This week I caught myself walking without too much effort up the stairs, and had to laugh at the difference from just a few days before. Neither I nor the doctors can really say why, but I'm not going to worry about it - just enjoy it.


Given my new energy and strength, I was able to add a few more "non-health" appointments in my blackberry over the last while, including (but not limited to!)

* helping mom and dad babysit (overnight) Jack and Davis on the long weekend and last night - entertaining physio! They were sporting their Saskatchewan Roughrider gear and really getting into the action, coached by Papa.



* picking my Survivor: Gabon season team with three friends over lunch (the pool has been running for over 10 seasons now and is fiercely competitive - no excuses including transplants!)


* talking to a group of brand new medical students about my case, and realizing I knew more about hematology than they do!


* having coffees, lunches and dinners with various close friends and family, feeling unusually like myself again, as well as extremely grateful. Pictured: 4 of the 14 Antonini siblings: Mary Ellen, Marty, Therese, Lou (dad)



This week I have several non-health plans and appointments, but will not even have to visit the clinic! My next hospital is next Wednesday, when I'll have another bone marrow aspirate to test the state of my marrow, Day 100 on the study calendar. While aspirates are never fun, it will be a marker of how well I am doing, and given how I feel as of the last 9 days, I'm sure it will be a good marker.


So thanks for helping me turn the corner..it's a great feeling to be moving in a different direction again. Cheers.

Pain and Celebration - Day 76

Just after my last post, I started experiencing pain in my stomach along with diarrhea and had to visit the clinic for fluids, tests and assessment. Dr. Brown's instinct was that it might by GVHD starting. By the time the tests were all back on Monday, the pain had eased significantly, so I just needed fluids and an increase in one of my stomach medications. While the docs aren't sure what the pain was, Dr. Brown was happy his instinct was incorrect this time.

Unfortunately, the timing of the pain cancelled our birthday/anniversary dinner plans. We instead visited the boys on the weekend to get some twin-time in. The boys are getting so old now, and Davis even spotted my twisted face when a wave of pain hit me - his little face with a furrowed brow and "you ok?" was enough to heal me!

Last week I continued to get stronger and I actually feel some marked differences. Mom and I made 2 laps around the loop at the house and I was able to visit some friends without being completely out of breath. I even got over to Tasha's, as she was back from vacation, for some much needed catch up.

On the weekend, I had some family friends visit me - Ellen from Regina and her daughter Amy, who flew in from London (UK) after living there for a year with her husband. I lived with Ellen and Amy while I finished university in Regina years ago, so it was wonderful to visit with them for a day or so. We had so much fun I forgot to take pictures!

Last night, we celebrated Dad's 60th birthday a day in advance, at home, with my brother, Dana and the boys. It was pure entertainment with Davis' dancing and Jack's comedy, surely better than the dinner we had planned.

I am off to the clinic in an hour or so, and I have no doubt that my numbers will continue to look pomising. I'll be happy to report that how I feel is starting to move in the right direction as well. Thanks for sending me the energy and prayers - it seems to suddenly have kicked up a notch!

Celebrations bring small improvements

I'm happy to report that I feel a wee bit stronger than when I last posted. While I'm still challenged by the same side effects, I puff a little less out of breath, can again walk the loop around our house, and haven't lost weight the past few days. Perhaps its all the Olympic fever motivating me! Of course I know it's more likely the continued energy I receive from everyone each day.

While I was disappointed that my plans to go to Tasha's cabin in Saskatchewan had to be deferred, I was lucky to have some of Saskatchewan come to me. Shelley Boyd and her mom Marilyn came to visit me and mom (and dad!) for a couple of days. Shelley lives in Montreal but was back in Regina for a while, so when my plans changed, she and her mom made quick plans to fly to visit us. Our moms have been friends before we were born, so we have known each other forever! While the time was too short and activities were limited to sitting, visiting and eating (and a few naps for me) - it was really awesome to hang out with old friends and feel normal again.

Monday was Day +60, a milestone for the trial, so I was at the hospital getting extra tests and bloodwork, as well as some follow up yesterday. The numbers continue to look good and the doctors are happy. With that news and the feeling I am making small improvements on the strength side, I am happy too.

Friday we're hoping to celebrate Mom and Dad's 40th anniversary (Aug 3rd) and Dad's 60th birthday (Aug 27th) and go out for dinner with my brother and Dana (babysitter pending). Since neither Mom nor Dad wanted a big party we decided to send them to a small island - Maui. Actually they had already planned to go in January so we just made it a gift instead! Not that creative but they love Maui so why risk it!

So I'll deal with my shakes, aches and fatigue...there's too much else to celebrate! I hope you enjoy every summery day before they're gone! Cheers

Day +51 Good on paper

I realize it's been 2 weeks since my last post. While overall I continue to do very well "on paper" as my doctors say, with normal blood counts and no reason to suspect any GVHD or infections, I am definitely far less strong than a month ago. I have lost a considerable amount of weight and am short of breath at the slightest amount of activity. My attempts to drink the required amount of liquid each day have not been consistently successful, so my visits to the hospital have increased to get liquids intravenously to supplement my oral intake. My tacrolimus (anti-rejection drug) dose has had to be increased in order to keep it in the range the doctors feel gives my enough protection from GVHD. With that of course, comes increased shakiness and itchiness. As well, with the weight loss goes my muscle, which increases the weakness, which increases the tiredness, etc. It's a bit of a vicious circle.

I do not want to sound like I am complaining, I just want you to keep you updated and realize why I haven't been blogging much. The doctors are very happy with where we are at, on Day +51, and let me know that I set a record on Unit 57 for "shortest inpatient stay post-transplant" which is remarkable as this was my 3rd and most of the other patients were on their 1st! Probably the tacrolimus dose, which was 0.5 on Day +1 and is now 2.5, is just starting to kick my butt a bit more than I had expected.

Despite the side effects, I have been able to see some friends and family during the past two weeks, which of course is a wonderful source of healing. A month ago, Tasha had invited me to "chill" with her family (and celebrate being done her radiation and herceptin treatments!) for a few days at Regina Beach next week, and so I booked a flight for this coming Tuesday. Based on how I am feeling now, unfortunately I had to change my plans. The good thing is it's Westjet, so I can use the credit later with Tasha!

So I'll get back to my quest for an easy liquid to drink, and attempts to get this strength thing turned around. I appreciate all the support and energy - I am sucking all of it in! Thanks again. Cheers.

Day +37 Just a little weary

I realize it's been quite a while since I posted. The past few days I have been pretty weak and sleeping a lot. My hands are also shaking a lot these days, so typing is a huge challenge (better than writing as I can delete)! I was at the clinic on Wednesday, and Dr. Brown calls my blood counts "remarkable" at this stage. My bone pain has decreased and nausea almost disappeared, so that is positive. New developments include some changes in my hearing, the shakiness and significant fatigue/weakness. I continue to have no appetite for food or liquid, but try to get as much in as I can. Dr. B is sending me to a hearing centre and then to a specialist to keep on top of it. Post-transplant #2 I lost most of my hearing for a couple of months, but then almost all came back. It's really hard to say if it was GVHD or related to medications, etc.

The bone marrow aspirate went well, but the full report was not back as of Wednesday. I'm not too concerned as the information is mostly for the clinical trial. I reached Day +30 last Saturday and took my last dose of one of the anti-rejection drugs, so that has eased my pill-load. On Monday I drove for the first time since May - only to the drugstore and through the Starbucks drive-through, but it was a nice step in the normal direction. On Tuesday I was able to see my physiotherapist and start a plan to get back some flexibility and muscle that I have lost.

Overall, I am still in super shape for Day +37 of my third bone marrow transplant. I know I have to just be patient, but some days I am just a little worn. I'll just hope my last few days of "investing" starts to turn into some benefit! Thanks again for your continued support...I hope everyone is enjoying the summer with friends and family...Cheers.

Day + 28 Birthday Blur and a little gambling

I can hardly believe it's almost been a week since I posted. The days really seem to blur lately, with weakness, bone pain, and skin discomfort keeping the pace pretty slow. Despite the slow pace, I can recognize some improvement - my nausea has certainly slowed and I think my energy between rests is a bit better than a few days ago.

As an example, I made a couple of first "limited public" appearances. Saturday Tasha and I drank lemonades at Starbucks and then I took Mom to lunch at Earl's on her birthday Sunday. It was a beautiful day and we sat on the deck and it almost felt like normal. Later that night, after a long sleep, we went to 'the boys house' for a BBQ birthday or "happy day" as Jack and Davis called it. I watched the boys entertain "Nana" for a while and was happy to go home tired for a good reason!

My visits to the hospital Monday and yesterday were fairly informative. My blood counts continue to be steady, and the doctors continue to adjust my 2 anti-rejection (immunesuppressive) medication doses based on the levels in my blood. After bloodwork, a chest X-ray, fluids and overall assessment yesterday, Dr. Brown outlined a few considerations for the coming months. It seems that I will have to be on tacrolimus, one of the anti-rejection drugs, for longer than I had expected. If I had a 100% sibling match, I would only have be on it for 60 days, but Brandon is no longer a 100% match because of transplant #2, so instead I will be on it for 180 days before they begin to taper it.

As part of the protocol for the trial, patients receive a chemotherapy drug in their spinal fluid each month for 5 months starting at 3 months post-transplant. Years ago, doctors realized that some ALL patients can end up with CNS (Central Nervous System) disease, stemming from the leukemia, and that by adding some treatments directly into the spinal fluid (intrathecal chemo), this risk was mitigated significantly. Prior to my first transplant and following my second, I received a number of these treatments. Dr. Brown is proposing that we skip the planned chemo injections and has discussed this with both the New York and Calgary teams. He again needs my decision on the matter, and once again it is a choice of which risk to take. The risk of CNS disease is higher by not proceeding with the treatments, but the potential side effects of the treatments (various neurological effects including paralysis) are daunting as well. So we'll see what gamble I'll take.

Saturday is Day +30, so tomorrow I'll have a bone marrow aspirate at the hospital. I'll have 3 more of these in the coming year, and this will show the doctors more details about the status of my marrow. I've had so many I imagine my bone looks like Swiss cheese! Regardless, it's very exciting to reach Day +30 and be so well, and I even get to drop 6 pills that I currently take each day, so that should lighten my daily "pill-load"! I may even be able to expand my "limited public" appearances in the coming weeks...

I hope all of you have a light and fun weekend, and enjoy whatever weather pattern visits you. Of course, I appreciate all the support, prayers and energy you continue to generously send me.

Cheers

Day +22 Yahoo!

Wednesday I returned to the Bone Marrow Clinic, 6 floors below Unit 57 - just enough room to realize that I was walking in as an out-patient. After bloodwork, fluids and a visit from Dr. Brown, I was officially discharged from Unit 57 - my wristbands were cut!

My bloodwork continued to look stellar. The pharmacist gave me my pages of prescriptions to fill (Douglasdale pharmacy LOVES me) and Dr. Brown outlined the list of precautions to follow (no crowds, no sick people/kids, hand washing, immunesuppressed diet, etc.) as well as symptoms to call or come into the hospital immediately. Basically any change in any part of my body is possibly GVHD! He also indicated I could not drive for at least another week and maybe longer depending on what drugs I am still on. I reported some changes in skin, bone pain, headache, nausea, bowel activity and fatigue. In the end, he said he reserved the right to call me in at any time, but that I would need to at least come back Monday for bloodwork and then next Wednesday to see him. Wow. A pretty great visit overall, the best part being it was just a "visit".

The days this week have really evaporated. Each day by the time I get breakfast, pills, shower, change my dressing and apply my various creams, it is lunchtime and more pills. Then I usually need a rest for an hour and a half. I have more pills with dinner and then at 10 pm when I get ready for bed. Not too much actual time in between all of that to get anything done, like laundry or making my bed! And with my fatigue, I'm really not capable of more than that and perhaps a slow walk around the block. I'm not explaining this to complain, I'm outlining it so that you don't worry that I'm bored or something! Not bored. At all. And if you don't see a post, it's likely I wore myself out my putting away some clothes and just ran out of the energy! All that said, I love my simple life right now and I know that every day I am getting just a little stronger, and managing the side effects a bit more strategically, every day.

A highlight of the week, other than discharge, was Wednesday evening, when my brother called over to see if we wanted to drop by to see the boys (and him and Dana!). I had quite a bit of bone pain, but did not want to miss out on seeing Davis and Jack after so long. I couldn't touch them, but was thrilled to be entertained by them for around 45 minutes. They had just returned from a long weekend with lots of Dana's family and cousins, so they were ready to tell and show all the new things they could do. Daisy even made the trip, which added to the excitement as they love to see her (and Jack likes to imitate her) Pure joy.

The Calgary Stampede started last night and you can almost hear the "Yahoo" in Douglasdale. Clearly I won't be heading there this year, but will do some yahooing myself at home. It's sure great to be out. I hope you enjoy being out too this weekend. Again, many many thanks for all the prayers, thoughts, Qi and energy. Yahoo to you!

Day + 19: Farewell June

It's hard to believe it's July. Not even a month ago I was just getting ready to check in to the hospital. June sure was an incredible month. The weekend was wonderful....beautiful weather lured me outside several times, and mom and I even went to Eau Claire downtown and walked along the river, grabbing a coffee on our way out. Mom, dad and I ate outside a few times, and really just took it easy. My fatigue is quite significant and the nausea comes and goes so I really appreciate mom and dad these days - they make extra trips up and down the stairs when I can't get enough energy to get up. Overall though, I continue to improve and am amazed to be at home.

Yesterday I returned to Unit 57B for most of the day, getting bloodwork, fluids, tests and seeing Dr. Chaudry. He's all smiles these days. My blood counts continue to move further into the strong end of normal, and the pain in my abdomen is almost completely gone. He's made an appointment for me tomorrow with Dr. Brown in the Bone Marrow Clinic, where the plan is to snip my hospital ID band and actually discharge me to an outpatient status, which is remarkable for a Day +20 3rd transplant patient (oh yeah, they don't have another 3rd transplant patient to compare to!). No more hospital nights!

So now my primary challenge is having patience with the medications, fatigue, nausea and lack of appetite. I just have to remember not to get frustrated. If a whole day gets "wasted" on sleep and sitting, so be it. It's an investment in the next day. I only have to recall all the other things I have faced over the years to realize that this is a pretty easy challenge in comparison. I will enjoy every non-fatigue moment I have!

Happy Canada Day! Thanks again for all your support.

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.