HAPPY NEW YEAR!!!!!!!!!!!!!!

Unfortunately Paula will be forced to stay in the hospital for a bit, her blood results were very low, therefore she got a blood transfusion yesterday. From Today on she is on a double dose of that Prednisone steroid, 100 instead of 50. Also whe got an extra iv antibiotic. To check why blood is weak they did another bone marrow biopsy again toady! The worst thing that can happen to anyone is a bone marrow biopsy from the pain perspective. They drill a hole in your hip bone with a tricky screwdriver to take out samples of the bone marrow from the inside of the bone. No pain killers, just a bit on the surface of the skin. She says it wasn’t so bad today, I guess once you know what to expect its a bit easier, or it was just luck or she is superwoman ;)

She is in the oncology wing Hurontario/Queensway.

I will try to kidnap Paulina from the hospital tomorrow so we can get ito the New Year celebrating with friends on "homey" grounds, not a hospital. My theory is that however and wherever you will be on the New Year day that’s ho with rest of the Year will be...so I don’t want it to be a hospital :( ...we also want to see Karolek dance and party with his buddies, fireworks etc...its gonn abe amazing....but if Paula will feel to weak to get away tomorrow or if the fever hits her at the wrong time we will celebrate in her room and will make the best out of it :)))

If we dont see or hear from you in the mean time...
HAPPY NEW YEAR 2011!!!!!!!!!!!!!!HAPPY NEW YEAR 2011!!!!!!!!!!!!!!HAPPY NEW YEAR 2011!!!!!!!!!!!!!!and you bastard 2010, F&#k YOU!!!

And now get ready to partyyyyyyyyyyyyy!!!!!!!!!!!! Life's too short to worry, hesitate, be afraid....just go crazy and do things you would never do yesterday ;))))

Peace and Love
Paulina and Konrad

Back at the hospital.

We decided to go to the emergency and be admitted to the hospital today morning. Paulina's fevers are unbearable at night, strong chills, delusions, and that heavy cough...nosebleed. She will, hopefully, go technical on the blood results but they were weak and probably a blood transfusion or a blood-platelets transfusion will be necessary today.

Btw. Christmas was the best one ever! I am coming down with a flu myself, every muscle hurts and possibly some fever - bad timing! Cant wait for this year to be over!

Konrad

...lets have the best Christmas ever!

The past 2 months were horrible for us, One day they said cancer is back, the next day that maybe it isn’t, then they don’t know, then its probably something else but who knows what...crazy play with our sensitive spirits, completely broken down at times, but somehow we always found a way to get up and find a little burst of energy to fight. Times like Christmas motivate us and its the most beautiful time to look forward to. The thought of Christmas gave us hope and we are so blessed to finally feel Christmas everywhere!

Although it looks like our family was tortured this and last year and pounded with every evil power there is and we hardly have the energy to breathe sometimes - sometimes we wonder what life really is about, why is this happening, but we make sense in all of this and are very happy today anyways!!! I guess suffering is a major part of our lifes, at least now. Although it might sound crazy but got used to this suffering somehow, to the long exhausting days and sleepless fearful nights filled with the dark panic attacks, the constant hospital visits, checks, biopsies, talks...together as a loving family we can do this and and we know that it can only be better from now on! The sun has to shine again one day! We will beat this nameless bastard like a gong!

The Christmas Spirit is everywhere, our home shines inside, it is very cozy this year like never before although not much was done to it :))) We have a feeling of internal peace and happiness and we try to keep all the worries occupying our heads outside. The birth of little Jesus in 2 days will give us new hope, new beginning, pure love and a bright outlook into the future. The birth of a new life always is full of blessings...we should embrace it and we should not fear or worry. Let’s make this Christmas simple, pure, full of warmth and love of our closest people and families. Let’s cherish what we have in our homes, and do not wish for anything else. Just laugh, smile, be happy, celebrate, eat, drink, sing carols, be like a child, share a little present with others (don’t forget its from Santa! ;)...lets be happy and thankful for every little thing that we own...lets have the best Christmas ever!

konrad

Hanging in (Day 21 on Prednisone)

So things havent been going so well. Really last Wednesday was the last day I would say it felt like the steroid was having a positive-effect in terms of energy and me feeling good. But, seemingly overnight, its like my body has said enough is enough; and my immune system has started to reject the steroid therapy.

SUMMARY OF FEVERS SINCE START OF THIS DRUG ------------------------>
Day 1-3 --no fevers, miracle, I had 36.5 C day and night for first time in 2 months!
Day 4-7 --fever (38.5 C) starts around the time right before single 50 mg dose (at noon). I dont take any Tylenol at this point (prednisone resolves fever)
Day 7-14 --fever (38.5 C) starts 3 hours before first half dose 25 mg (at 9 am); no fever after first dose and before second half dose (at 2pm). I start taking Tylenol (one per night) as advised by respirologist
Day 15-today --fever (38.5 C) starts at first 3 hours, now up to 8 hours before first half dose at 9am (one Tylenol); after this another fever (40 C) returns (2 more Tylenol) and lasts well into the afternoon hours.

I am dealing with fever management for 12 hours (half) of the day now. Switched to Advil as well as it is a bit faster-acting, and the 40 C fevers have me out cold, with whole body chills and barely able to move. It takes about 2 hrs to get the fever down to 38.5 C at which point I start feeling remotely able to function.
-----------------------------------------------------------------------------------------------

From noon to midnight (my span of no fevers on a good day), my energy level is already not what it was in week 2. Much lower. I cough more.

I saw Dr. Mao last Friday and today for a follow-up. I had taken Chinese herbal tea for past 3 days to:
- eliminate cough (tea not successful; actually coughing more)
- help body rid of phlegm (tea was sucessful; cough was more productive)
- help my weak kidney (detected from my pulse) as evidenced by frequent urination (tea was successful/ woke up less frequently in night for bathroom visits). Side note: he believes weak kidney after chemo/transplant to be cause of fever as doctors have found no evidence of infection and besides that and cancer heat, kidney (blood filter) could be the only other source of fever

Today I got 5 more days of tea to work on the fever/cough. His instinct is for me not to cover-up the fevers with Tylenol (I'm up to 3 per night) as its just stopping the immune system from fighting something; he is hoping the tea will prevent fevers from getting so high.

For relief, today I got suction cup treatment on my back --this is an ancient technique which he suggested to remove any dampness in the lungs (though they have always appeared clear of fluid in scans). This was to help reduce cough and phlegm.

It concerns me that Dr. Mao has said the dose of prednisone I am on, and the length (he just about fell over when he heard they planned to keep me on this for 9 months) is too strong, and very hard on the body.

All this with Christmas right around the corner and less and less doctors around.. I am by no means dropping what the specialists have given me; but my fear and uncertainty would be sky-high if that were my only hope right now. I see its not working; and I am happy to put my hope in the prospect of these herbal tea mixtures helping me, and for those that may worry, I am confident it is perfectly safe with the prednisone. The Chinese doctor is aware and has not given me anything to interfere with or affect immune function. Simply something to relieve the cough/fever symptoms now that the prednisone has suddenly stopped working. I am thankful he caught the weak kidney, and I like the holistic approach of this doctor. In his diagnosis, to my surprise he even detected jaw pain as I have experienced lately. He basically said my condition is simple, "Lung infection that is 'like' pneumonia".

One may ask what about the specialist looking after me.. As of Monday morning, the voicemail at the Respirologist office was, OFFICE CLOSED UNTIL JAN 4th, PLEASE DONT LEAVE A MESSAGE AS WE WONT RETURN YOUR CALL. Very comforting..

I contacted my oncologist at Princess Margaret so that it is at least on file that I am not feeling well, and sadly all he had to say was 'I'm sorry you are not doing well on the steroids and experiencing these fevers; if you feel you cant handle it anymore come to Princess Margaret and we'll get you admitted'. He offered me another CT scan of the chest for tomorrow, but I politely declined, and he didnt push me to come at all, agreed it was better for me to rest and I will get the scan in the new year..

Meanwhile, the natural herbal approach that comes with this new doctors confidence that in a week or so the cough will be better and doctors can start taking me off the steroids, gives such a breath of fresh air. I cannot say how happy I am to have something like this to believe in, at a time when I can see that the therapy that seemed so promising at first, was unfortunately short-lived and the tea brings hope of a desperately needed alternate direction.

On the home front the boys are doing great. Karolek is more and more excited each day that leads up to Christmas. So many events this time of year, they have something to attend almost everyday it seems, and its exciting and I'm so proud of them and happy that they show up in my name as well (as I have been simply unable). I know I have to take it slow, and have been lucky to have friends/family visit me so I'm not alone in this weak state when they are out.. So things are working their way out, we are on eggshells, but just taking it slow, one night, one day at a time :))

I will try to write more frequently when I am able, otherwise Konrad will step in and update as he has been. Thank you all for your concern and well-wishes. Sorry for a long and maybe too-technical update.

Paulina

40 Degree Temperature

Paulina had 40C fever (a record!) today morning at 7 am, it slowly went down to ~38 around 9 am. A Very hard morning full of fear and doubt. She spent the day in bed; she had a few functions to attend but had to pass. :(((

Karolek got a visit later on by his dream girl, little 5 year old Princess Paulinka...he is blushing when we speak about her ;) They are quite the couple :)

Konrad

Chinese Medicine

Its Konrad here, not Paula ;) I guess I will write a quick post for a change. A simple one. I really thought Paula would update this blog today, but honestly she is feeling a bit different, weaker so to speak, more emotionally taken by all of this. The past 3 days were bad. A emotional rollercoaster. The cough doesn’t stop and she struggling to cope with all of this emotionally.

I dont know what is the right thing to write today here so she is not upset at me tomorrow ;) But anyhow, she has visited this amazing Chinese Medicine Doctor yesterday and he prepared a healing Tea for her to drink for the next 3 days, 3 times daily. She supposes to feel much better!!! just after 3 days (Amazing!)  and then she will get a different tea again.  By Tea I am imagining its some sort of herbal medicine. Sounds super simple and hard to imagine any effects after just by drinking tea but these Chinese doctors are light-years ahead of doctors of today when they don’t have access to their super machines of today (x-rays, cat scans, pet scans, blood tests etc.). Without those they have no idea what a person has. The Asian Doctors look at your eyes, your tongue, your hands, listen to your blood stream flow....really cool things that medicine should be based on. They also check your urine/stool and just by looking at it they know your sickness. So we should never underestimate Chinese Medicine. Well, to come back to what I wanted to say is that after drinking the first tea she literally sat on the toilet for the first few hours, her system was "flushed" or some sort of a cleanse was happening. Hard for her but at least, it had an immediate effect which I like, because we see its working right away. After she flushes she wants to eat and is hungry all day today which is also amazing! The Premisone (no idea if its spelled correctly) she is taking has NO positive effect whatsoever except that she eats a bit more and she is on it for a few weeks now. My guts tell me to stop it or at least decrease the portions she is taking. She wrote what side effects she has, but the mayor one is her hands and skin on it is dry, fingertips cracked and are hurting, and they are very sensitive - warm tea seems hot to her...FYI, the cough is always there, very loud, also she still throws up often, has fevers few times a day...39.5 just yesterday morning, her ears hurt too inside, I guess its from the fever...anyhow, it supposed to be a short message, maybe I will write more tomorrow - if Paula lets me ;))))...stay warm, Konrad

Fever and Headaches.. What to do??

While I had a good few days since my birthday, with nice levels of energy, the darn fever that has been giving me trouble for so long now, is just not going away and in fact is getting worse. It has continued to come back not only ~5am before my morning half dose of prednisone (9am), but also creeps back after the dose and lingers until the next half dose (at 1pm)..

Yesterday was the highest temperature I have had, fever peaked at 39.5 C around 10am, 1 hour after my dose. What I did differently yesterday was that I didnt take the Tylenol at the second onset of the headache/fever (9am) because it coincided with the time of taking prednisone.. But when I realized the cold ice pack I had placed on my forehead when I woke up (10am) was already warm from me burning up and I could hardly move my body, I immediately took a Tylenol. No relief, I lay in bed until a little after noon and then slowly the temperature came down, headache subsided, and energy kicked in. I was also unable to eat solids in the morning due to jaw pain, I think from coughing so forcefully, I may have dislocated my jaw.. not making swallowing pills too easy either.. This pain went away a little over the course of the day.

I am taking so much medication, and this week going from one to two doses of Tylenol to keep me out of the fever seems excessive (when I think how long will I have to keep doing that, and it keeps getting earlier that it starts, sometimes 3 or 4am now that it sets in and the first headache wakes me).

Panic set in today, seeing how I felt good enough to go out to spend time with my friend, her son, and Karolek one day, and the next day, I felt like I am back to where I started, unable to move or get out of bed for most of the day.

These swings are very concerning.. But I hope I will listen to my own advice when I say, perhaps it is that I have pushed myself a bit too much (as it is my nature) as I have been excited with my birthday and upcoming holidays to get out when I feel able and live life to the fullest I can. Maybe its a little reminder to keep it slow and take the baby steps forward as they come, if I over-exert I unfortunately may have to deal with bigger leaps back..

On another note, happy to say we have been proactive around here in the past couple of days. Besides dealing with getting our furnace repaired (which conveniently broke Wednesday as a cold night was setting in), we were lucky to get another interesting contraption set up in our basement, a neutralizer for ElectroMagnetic Fields (EMFs). Harmful EMFs (found in each and every home these days) may be a contributor to headaches and may interfere with immune system functioning; research suggests that EMFs can cause cancer or other diseases (more on this on the website above and http://microalpha.com/).

Truth is that both Konrad and I do not sleep too well in our room, and have often awaken with headaches over the past 3 years living here. We moved the bed based on Feng-Shui (so that the foot of bed is not facing the door), then thought it was the mattress, now we will see in the next few days if this neutralizer makes any difference in how we feel. Nice thing to learn was that Karolek's room had much lower levels (we had 10-11 of 12 maximum reading in our room, he had barely detectable signal of EMFs). Maybe thats why I often doze off reading him bedtime stories and wake feeling nicely rested..

We are also going to get back in the swing of things with juicing. Our friends in Florida (Got Sprouts?) mailed us a state-of the art juicer, the Omega 8006, for maximum nutrition :)) We are so excited to try it out and start feeling the benefits. When we were staying with them in Florida, we learned to make all kinds of juices, extract our own wheatgrass juice, with a similar juicer and we loved it. Karolek used to crave the green drinks over orange juice, saying he could feel it made him have BIG muscles, which he showed off proudly. Hard to believe it has been a whole year since we ventured out to Hippocrates Health Institute and our eyes opened to the power of diet, and benefits of juicing. The motto there was "Its not the FOOD in your LIFE, its the LIFE in your FOOD".

Today I will see Dr. Mao, herb and vitamin specialist and traditional Chinese medicine doctor, who has come highly recommended. I will be asking about use of vitamin B17 which has come up often when talking to people lately. I am interested to see if he too will be confused about my condition, or will be able to provide his own diagnosis.. I am hoping he will have some advice about the fever and generally what I can do to get my immune system back in check (since its apparently going hay-wire)..

Happy birthday indeed!

We had a nice calm day on Sunday (my birthday), poor Konrad was feeling under the weather and was toughing out some stomach bug that was accompanied by fever.. But he got his strength together, and we spent some time with family.

I am happy to report I have my appetite back, which is definitely because of the steroid effect, but its encouraging because as my friend pointed out, me eating has always been a positive indicator of my body being ready to fight. Its when I dont eat, and I havent been the past 2 months, that has those closest to me worrying (I lost 18% body weight in that time). And on my birthday let me tell you, with our two families, I was blessed and ate to my hearts content (Konrad missed out a little this time) :)

Tiramisu, tiramisu, was the cake of the day (and there were two)!! The highlight of the day for me was watching my son sing loud as he could, Happy Birthday and Sto Lat; this was the first year he knew all the words and it was precious. Brought a tear to my eyes, as he sang in that innocent strong little voice "sto lat, sto lat niech zyje zyje nam" (which is essentially, 'may mommy live 100 years')..

The entire day through, I felt such a wave of positive energy and birthday love I cant describe. Thank you to each and every one of you for making me feel so special, I am energized and determined, God-willing, to regain my strength and to get to better state of health by the time (and hopefully well before) I enter my 30s next December :)

On the technical aspect of things, I continue to wake up daily at 5am with a monstrous headache, onset of a fever that is just starting to set in. I have been managing this with Tylenol prior to my morning dose of prednisone but I would love for it to stop.. Today after my morning dose the fever came back for the first time during the day since the past 2 weeks on the therapy; I slept this off (with the help of more Tylenol) but I definitely dont like that its coming back in the day..

My cough is persistent as ever and louder as the boys have noticed, poor Karolek cant fall asleep at nights as thats when I usually have the worst cough fits.. He lies in bed covering his ears and tells dad in the next room "poor mommy still coughing".. (I go downstairs with my cough while he's falling asleep). Taking everything I possibly can, puffers, nasal sprays, cough suppressants.. Have to keep being patient and for now it still feels like things are at least moving in some direction (change is good from how I was feeling since September).

Another side-effect that has come back is something I had experienced back in March when in hospital, also on similar steroids to hold me over between chemo therapies. My hands are extremely dry again; fingertips red as the layer of skin gets very thin when on steroids.. I have been using creams (try to stick to organic ones), but if anyone has a brand or advice on mending dry skin, especially now in the winter, I would be happy to hear any ideas :))

Thank you again for the birthday wishes, and special thank you to my girls who came today to celebrate my birthday with their growing families. It is times of joy where we forget our pain and troubles, and the strength drawn from love of friends and family around us at times like this, is just so wonderful.

Paulina

Happy Birthday Paulinka!

Happy Birthday Paulinka!

Update.. and a Christmas Tree :-)

Where to begin? It has been a long week, and it isnt over yet, with medical appointments keeping us busy amidst that cold that Karolek caught on the weekend making its way through our home ;) Karolek is just about back to normal; Konrad had it but was back to normal after one day; I caught it too, as expected with the drug I'm on thats suppressing my immune system so I catch everything. So this little cold has added some symptoms to the mix for me but I hope in a day or two these will be gone for me as well.

On Tuesday we were back at Toronto General to see the respiratory specialist (who wanted to see me when he learned I was experiencing fevers), and though it wasnt a good sign I was seeing him after only a week on the therapy, we got some words of reassurance while there as well:

1. The fever between doses could be for many reasons and for now I should do my best to just manage them (I am taking Tylenol and I began splitting the dose of the prednisone in half and am taking twice a day instead of all at once).

2. The increase in energy I am already feeling is the first sign that we are going in the right direction. :)))

3. The question of when to expect the cough to go.. Roughly after one month. Obviously this will not be exact to the day, but it helps to have a general idea and for us not be as frustrated when it isnt gone yet.

4. Since I have been coughing more (a harsh, hacking cough) this past week, a nasal spray (Nasonex) and cough syrup (Hydrocodone) were added to the list of drugs I'm taking to help dry things up and prevent the incessant tickling, and dry cough that I have all day long. Its all trial and error, but I am more than willing to try and hope these additional drugs will help.

Today we were back in Toronto again for a cardiac ECHO. This was to check on the heart following my latest CT scan which showed some irritation around the heart (near the inflamed lung). I believe this irritation/ a pericardial effusion was ruled out today as the technician commented that everything looked normal.

Happy news! We were so lucky to get a good 'pick', a beautiful Christmas tree, from IKEA, on our way home from the appointment Tuesday. A beautiful sunny day, we had hundreds to chose from, all tied up, it was going to be hit or miss.. Here it is and we love it :))) Now its beginning to look a lot like Christmas...

We just cant say it enough, Konrad and I thank you for lifting our spirits and helping to awaken the holiday spirit in our lives at this time. You have touched our hearts in so many ways, and we thank you for reminding us we have so much to be thankful for.

Paulina

Snow outside the window

A week into the therapy, I wouldnt say I'm feeling better or worse, but different. My body is definitely reacting to the drug, and its no wonder in the high dose I get (1 mg/kg body weight; I take 50 mg). To put it in perspective, when I took it as part of chemo, I got 100 mg for 3 days in a row, every 3 weeks. Now taking half that amount EVERY DAY for up to 9 months, just seems crazy!

This therapy has given me major swings of ups and downs, in not only mood but how I'm feeling from day to day. I am coughing more, sometimes productive, but mostly a very dry cough. Good news is I am breathing better, able to take deeper breaths.

Today I got scared as I noticed a crackling sound when I coughed more forcefully.. Then we realized Konrad could feel this when he lay his hand on my back near the bottom of the left lung and felt 'bubbles'. A quick visit to the family doctor calmed me down as he said it could just be a pulled muscle beneath the lung; the lungs still sound clear. A relief.

What is concerning to me is that 2 days in a row now, 2 hours before my scheduled daily dose of prednisone, I got sudden-onset headache, ear ache in both ears, and a fever of 38.5 C that lasts a few hours. Otherwise, throughout the day and night, I do not have fever since I started this drug.
 
Overall we had a calm nice weekend, a lot of family time, sadly Karolek developed a cold though, and has a runny nose and is sneezing. Poor little guy, his first cold in over a year, but we've enjoyed many movies and down-time on the couch as mommy and he stay in and out of the cold winter weather. Its nice to watch the snow come down outside the window.

We're also slowly starting to feel the Christmas spirit. Today, December 6th, we celebrate the tradition of Saint Nikolas Day, Karolek scrubbed his rubber boots and lay them at his bedside in hopes that Saint Nick would come and leave him a gift. If he had been a good boy that is. Sure enough he woke to a little gift in each shoe. Then it turns out that St. Nick also left gifts at each of the grandparents houses intended for our little Karolek ;) So our boy was all smiles and now he's anxiously counting down on his Christmas calendar (the one with the daily chocolates) to the 24th, so he can leave Santa Claus milk and cookies and he hopes to hear the reindeer on the roof. A few weeks til Christmas, I hope I am feeling more stable with all these symptoms soon...

Paulina

Thank you

I want to take this opportunity to thank you all.. We are overwhelmed with the tremendous interest and support, the outpouring of emails and well-wishes we have received. I cannot describe how much you have brought our hopes up, it is such a comfort to be reminded we are not alone. Thank you as well for helping us to spread our story and raise awareness by sharing this blog.

I would like to share with you with a video made earlier this year. I think it reveals what ignites the fire within me.. This was made as a tribute to my son. In the darkest hour, he brings in so much light.

March 2010. Konrad brought Karolek to the hospital to surprise me with a new outfit (Buzz Lightyear). This was the most uplifting and memorable day during a long 5-week stay at Trillium, the most challenging time we'd faced as a family. I was admitted after the lymphoma relapsed with DHAP chemotherapy, it was not effective and we were desperately waiting for it to wash out so that I could be put on another stronger chemo, mini-BEAM, to attempt to fight the cancer that was now more agressive than before. We were told to prepare for the worst, prognosis was poor, about 10% chance of mini-BEAM working without another relapse.. Days like this one during my stay, gave me the strength and will to fight on.

Much love and thanks,

Paulina

Day 3 on Treatment

Today is day 3 on the prednisone (steroid) treatment I have been started on (see last post). Here is some of what I've been feeling:

INSOMNIA --Unike the 'insomnia' I had before where it was due to pain, a pressure in the chest as if an elephant was crushing me and sheer discomfort from any position but a sitting position for sleep.. This is insomnia from the steroid.. In the past on steroids I have been known for my extreme chatting and excitability. I suppose also essays when writing ;) Its a change from my complete lack of energy in past months and I like the feeling (like an adrenaline rush), though tiring when its 4:30 in the morning and I'm wired, doing my favorite puzzles, SUDOKU, to try and get sleepy. Not too fun in hindsight ;)

INCREASE IN APPETITE --I woke up today thinking about food, still didnt eat much, but its something I have been put off by since I have been bringing up food the past month and a half.. Combination of fevers and severe cough attacks that would lead to gag and acid reflux and I didnt hold much in.

COUGH AND BREATHING --My breaths seem less shallow and I even missed one dose of asthma puffer (Advair and a bronchodilator) I have been taking at least twice daily for 3 weeks, without which I couldnt function. The airways felt very narrow and constricted (from so much inflammation) and I would wake up wheezing, gasping for air in the shallowest of breaths, so desperately. Cough remains as frequent as before, but noticing its not as productive, which is actually quite annoying, a ticklish scratch at the back of the throat just doesnt go away and ignites the cough.

MOOD CHANGES --My moods have been quite variable. Happy one minute, crying the next. Irritable and snappy. All expected side-effects.

BODY TEMP --I feel feverish at times and have hot flashes but my temperature has been NORMAL (36.5C) since starting this drug (I had 37.5 C and up the past month and a half; 39 C at nights!!).

EXTREME DIZZINESS --Not expected and a concern with the doctor. Very uncomfortable feeling and I am not myself, I hope this passes because I may have to stop treatment if this persists for a week.

STOMACH UPSET --Prednisone and an antibiotic I am on to prevent infection, cause stomach irritation. Felt this first day, but got smart fast and now take Zantac 20-30 minutes before taking drugs, and it has prevented this unnecessary discomfort.

As a side note, I also take probiotics recommended by a Naturopath, Coral Calcium, vitamin C and vitamin D along with this treatment.

I will keep on keeping you posted!

(non)-Results of Bronchoscopy 2 and Start of a New Therapy

As many of you have read in Konrads posts in My Story, I have recently been facing a new challenge, a bump in the road to recovery. My condition has been going from bad to worse, I am frail (most of what is left of my energy goes to coughing) and what is most frustrating is that doctors that have been following me are still scratching their heads wondering what this might be..

We were back in Toronto General yesterday to see the respirologist that I have been seeing for the past month. He performed this bronchoscopy and the one prior and he told us that they managed to get 'okay' sample this time but unfortunately the results of the test were inconclusive.. Pretty much everything they tested for has come back negative so far, as in the previous Bronchoscopy, and as the doctor said, "NO BAD NEWS IS GOOD NEWS". We'll take that. But it still doesnt tell us what we are dealing with.

For now, seeing my deteriorating condition is of great concern to this specialist (thankfully). Rather than subject me to more tests at this time, he decided to start me on a therapy for the condition he has recently come to suspect. It is an auto-immune condition that is a side-effect to stem cell transplant/chemo, called BOOP -- Bronchiolitis obliterans organizing pneumonia. My oncologist has backed up this idea. Basically they will try and see if it works and they can take me off it if they dont see improvement. For now they want to try for a month and see. So I got started on a corticosteroid that has a long list of unpleasant short and long-term side-effects including immune-suppression (so high risk of infection). However they feel that the benefit I may get from this as I am very sick outweighs all the risks.

My new everyday motto that has been a blessing to live by, has been to just take things ONE DAY AT A TIME. Its the best we can all do, try and live in the moment. If its a bad day, tomorrow may bring a new perspective; if its a good one, embrace it, tomorrow what brought you that happiness may be gone. And what good does excessive worry bring anyways? A friend once told me in Florida, in a time of such uncertainty our lives, we went there in search of an alternate cure for cancer just days after I had been diagnosed the day before Christmas (2009).. I was away from my son for the first time in my life, fighting for another way, and going in for a treatment they provide there. My friend took a look at my face, and knew that I was having a bad day. She knew I was prone to worrying, and said to me 'You know, worrying is just praying for what you dont want'. She definitely stopped me in my tracks and made me think..

Some recent pictures:

Snuggle time.                                            My growing hero; with his hero -Bumblebee.

One wish

Every person has 1000 wishes, a cancer patient only has one: to get better.