Test

I am testing to see if I can upload a blog entry from my blackberry.

Lorna
Sent on the TELUS Mobility network with BlackBerry

Marching forward

Well, the marathon at the hospital this morning went quite well. Amazing what you can get done in the time it takes to pay $13.50 in parking fees!

I felt fairly comfortable when went to see the doctor - we were taken into a regular clinic room. If we had gone into the "pretty" room I would have been more worried. And we found out what we already were sure we knew. Doctor Haider confirmed that the biopsy was positive for metastatic colorectal cancer, and that the cancer is progressing. He didn't seem to think that it is a result of the missed chemo in April or not taking oxaliplatin. He figures it has been there for a while – which is what we now think. We spent a lot of time thinking it was ligaments and cartilage as the pain was the same as a prior injury Callum had years ago. It all made sense to us! It likely comes as no surprise to any of you to hear that it is not really common for colorectal cancer to spread to the bone, and if it does, it usually appears in the back area, near the site of the original tumour. While it is not unheard of to have it in a distant site (ie. Limb), it is unusual. Callum continues his path of being unusual!

Callum will have his main chemo drug changed to Irinotecan (along with the 5FU and Leucovorin). The Irinotecan is the chemo drug he started with in May 2008, but with an all too early CT scan way back then, it was feared that he was resistant to it, so was switched to the Oxaliplatin. Doctor Haider is confident that this drug will help slow the progression of the cancer, and we hope it stabilizes it again. He starts this regimen June 29. We are waiting for the radiation appointment for treatment to the bone. It sounds like he will have something like 2 – 5 treatments, but we aren’t sure yet.

The tissue from the biopsy was checked for the KRAS mutation (one of those medical things) to see if he would be eligible for treatment with Vectibix, a biological agent that has been recently approved for funding in Saskatchewan and has shown to be helpful for people with advanced colorectal cancer. Unfortunately, he has the KRAS mutation, which means that particular treatment won’t work for him. On with the research!!

It was so nice to hear Doctor Haider say that even though at some point our hands are tied, as long as we have options he is prepared to fight this thing. What a great thing to hear and know he is supports our fight!

So, we continue to carry on for now and wait to see the results of the brain MRI and chest/abdomen/pelvis CT that were done today. Hopefully in a week or so we should have some results.

Perseverance is not a long race; it is many short races one after another. Walter Elliott

TTFN

Lorna

Bump, Bump...

Well, we heard from the docs last week - biopsy was positive for metastases in the femur. We were crossing our fingers it would be different, all the while knowing what it really was. It was still a bit of a blow, anyway. We see the doctor Monday, June 28 to get the new plan, which will likely at the very least, include radiation. We will find out then what the rest of the plan will be!

We had a great week last week. We were in Brandon for C. 's grad, and then had a grand adventure getting to Medicine Hat for Vanessa's birthday!. Quite a few miles put on the Porsche in 8 days! We did lots of visiting with friends in both Brandon and the Hat, and had some wonderful family time. We were lucky with some nice weather and were able to go to Echo Dale Park with Stu, Vanessa and Cade. We were very obviously grandparents as they looked at us sitting under the tree, one with the video camera and the other with the still camera! I just miss Cade and the kids so much when we aren't there, I have to take a million pictures!

We finished off the day with a fire in Vanessa's back yard. It was a wonderful day! We were able to have lunch with some great friends, coffee with our nephew C and family, and have supper with my brother and nephew! It was another great day!

I will update the blog once we have more information!

There is no medicine like hope, no incentive so great, and no tonic so powerful as expectation of something better tomorrow. Orison Marden

TTFN

Biopsy...done....

Things went well today. Dr. Hussain is the most excellent doctor! We are so thankful he was willing to do the biospy so quickly. It wasn't near as bad as I thought it would be, but it was quite interesting. The procedure was done in the clinic office and took about 20 minutes total. The area where the drill went in was frozen, but they can't freeze the bone, so there was a bit of pain when the Dr was taking the bone pieces. The drill (not a motorized one, all of it was done by hand), looks like the notched on in this picture.

Callum did quite well, but was pretty doped up for a while. After the biopsy he headed across the hall and had a blood transfusion of 2 units since his hemoglobin has been a bit low again.

He has spent quite a bit of the day sleeping and resting, and is starting to feel a bit more pain now that the freezing is gone and the heavy dose of pain meds has worked out of his system.

I am sure tomorrow will be better, even if he still has some pain.

We should have the results some time next week.

TTFN

Lorna

Bumpity, bump, bump, bump...

It has been an interesting week or so. We recently found out that the pain in Callum's knee has nothing to do with cartilage or ligaments, and they are suspecting it is cancer. He will have a biopsy tomorrow morning (June 15) and hopefully we know something within a week or so. He is feeling fine, except for the blasted pain in his knee. It is really quite disappointing for him to feel so well but not have full mobility.

It is just another bump along the way - that is our perspective, anyway! We really won't find out any treatment plan until we have the biopsy results. The orthopedic surgeon we saw is an awesome doctor! Very respectful, thorough, and patiently explains things so we are able to understand.

We have a busy month coming up with birthdays, visitors and graduations. We are looking forward to seeing so many people and having a wonderful time visiting.

I would be lying if I said I wasn't worried. This is another scary bump. One we knew would happen, but it doesn't make it less scary. I don't thing anyone can not feel scared when they find out there is cancer active in their body, or the body of someone you love. But don't count my stubborn husband down and out - he has already surprised the hell out of a lot of us, and he can do it again!

I will keep the blog more updated as things happen and we have news.

In the meantime....here's a picture of a proud Grandad!

FACE YOUR FEARS

You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face... The danger lies in refusing to face the fear, in not daring to come to grips with it... You must make yourself succeed every time. You must do the thing you think you cannot do. Eleanor Roosevelt

TTFN

2 years later

Picture: Callum and my brother at the AC/DC concert in Las Vegas, April 9/10.

Here it is over a month since the last post - not a few days as promised! I think I really just could not write much more about Callum's hospital stay. The "Reader's Digest" version is that he made it through a real rough time. We were really fortunate to have so much family around - everyone travelled for hours just to come and be with him. He had a few ups and downs after that, but with some major antibiotics he recovered. And both of us learned we could trust me to give him an IV antibiotic and flush an IV line!

- The IV pump and antibiotic tube.

Lately I have been thinking more of the past 2 years and all that has happened. It was 2 years ago on April 10 that we first learned the cancer had spread to both lungs and there was to be no cure. I remember some very tense filled days as we tried to fight hard to see an oncologist and get the treatment he needed as soon as soon as possible. April 14 was the 2 year anniversary of the lung biopsy. Another long, stress filled day - well, week, I suppose. April 15 was the 2 year anniversary of my job at SSEA. And coming up April 27 it will be 2 years since Callum was given the 18 - 24 months prognosis for life expectancy (which was later reduced to 6 - 12 months in Sept/08). Well, he showed them! Recently there has been some growth in the area where his one remaining brain tumour is. It is most likely still some swelling from the gamma knife procedure he had in Dec. But as a precaution, we went to see his fabulous neurosurgeon, Dr. D. Fourney. He said that Callum has done remarkable with the metastatic disease. He recently was told by an oncologist that if he were to say how things were going just by his clinical exam, he would say he is great. I am sure they are wondering why his physical appearance just doesn't match his file!

So, over the last 2 years, these are some things that have happened:

- lung biopsy

- chemo

- brain metastases

- blood clot

- gamma knife surgery

- whole brain radiation

- change in chemo drugs

- more gamma knife surgery

- sepsis infection

- 11 day hospital stay

And:

- trip to Ixtapa

- trip to Scotland

- day trip to Carnousite and St. Andrew's golf courses

- bought Porsche

- 30th wedding anniversary

- trip to Ireland

- birth of the sunshine of our life - Cade

- trip to Vancouver Island for a 60th birthday party

- another trip to Ixtapa

- trip to Las Vegas

- celebrated parents' 50th wedding anniversary

- many, many, many wonderful moments spent with family and friends

We certainly have made the most of the last 2 years. And we continue to set goals and make plans. We are planning to see George Thorogood in Saskatoon in May, and go to Toronto to see U2 in July. We are most thrilled to be invited to our nephew C's graduation in June. Callum is really looking forward to his golf match: our son Jamie and nephew Chris versus Callum and Chris's father-in-law. Those young guys are in for a wild time!

And of course, we always enjoy our time with Cade (and his parents!). He is growing up so fast and is just a wonderful boy.

We never know how things will turn out. We are very lucky to have had this wonderful time with Callum. He continues to do well and he is an amazing inspiration to many. He is my hero.

“I am only one, but still I am one. I cannot do everything, but still I can do something. And because I cannot do everything I will not refuse to do the something that I can do.”
– Hellen Keller

TTFN

Lorna

WARNING! Emotions involved -discretion is advised! part one.

Yes, discretion is advised. I have not blogged in about 7 weeks. And now I will start again. Emotions will be a big part of this blog. We have had a rough road, but thankfully things are now better. I started this blog so that I could have an outlet for my feelings, a way for me to cope, somewhere to make sense of the senseless. If any of those things are truly possible.

So, if you don't like emotions, if you have experienced a similar thing in your life, you might want to skip this blog entry. Callum, that might mean you. At times I have tried to keep things very positive in these blogs - to focus on the good things. We have travelled this journey together, step by step, the good, the bad, the uncertain. In January we experienced the same crisis, but in vastly different ways. I do not want to cause you more worry or distress. You are welcome to read this, to take a "walk" along this part of my journey, but I understand if it is difficult.

So, now that I have everyone's attention.....

My last blog was Sunday, Jan. 24. We had just had a wicked winter storm. Callum had just recovered from a flu or something. He was feeling better. And then came Tuesday.

Callum woke up at 4 am with a headache and vomited. He took a gravol and went back to sleep. He started shivering afterwards and when we got up to get ready to go see Dr H he was still not well. We headed to the ER where they monitored him for the day. His temperature starting going up, they gave him Tylenol, the temp went down, his heart rate was fairly high and his blood pressure fairly low. By the end of the day they asked to keep him overnight - mostly for observation. We found out the next day he had sepsis, which they thought was caused by some form of E.Coli.

Wednesday went pretty good. He was moved into an observation room on the oncology ward and started bantering with the nurses, L and P. We knew he was sick and were expecting a 4 - 5 day hospital stay.

Thursday, he was sitting up in the chair for breakfast, and looked quite a bit better. I went back to the hospital about 2:45 pm that afternoon. They had started giving him Lasix to help get rid of the excess fluid in his body. They had been pumping him full of fluid to try and flush out the infection. He said he had been sitting in the chair for lunch. Somewhere around 3, he suddenly said he was feeling cold, shivering and I gave him another blanket. He asked for the oxygen mask so I let the nurse know what he wanted. He had just finished a blood transfusion and they thought he was having a reaction to the blood so they gave him some bendryl.

The next thing I remember I had nurse S.'s arm around my shoulder asking me if Callum wanted to be intubated, if we got to that point. Up until then I absolutely believed they would be able to get him through this crisis. I had no idea that we were now faced with something so serious. Intubation, that means he can't breathe on his own. They are asking me if I want, if he wants, to have life saving measures, if it comes to that. The words were so hard to comprehend. What were they telling me? I had to ask if I needed to make this decision right now, and was told that yes, they need to know Callum's wishes, just in case. My first thought was that V. was only a few hours away from leaving on her vacation to Mexico. Should I call and tell her not to go? I don't know how many times I asked that. And each time I was told that they strongly suggested I call. That I call all the family. It was too early to tell if it was really needed, but it would be the safe bet to call them in.

My head started swirling. Medical professionals filled the room - one, two, three, four, five...I lost count how many white coats surrounded his bed. I heard someone ask for ventolin. I remember thinking that means he is still having trouble breathing - they had to keep him breathing. I went into the hallway, pulled my pink blackberry out of my pocket, looked at the screen and tried to figure out how to dial V's number. I have no memory of exactly what I told her - I am pretty certain I said they told me to tell her she had to come to Saskatoon. My heart broke to tell her- not only because we were facing a crisis I didn't yet truly understand, but because she was just hours away from heading to the beach, a vacation that she and S. so much deserved.

Fog continued to fill my brain. One of the nurses saw me on the phone, tears streaming down my cheeks, and gently guided me to the unit clerk's room to finish phone calls. I tried so hard to concentrate, but time after time I misdialled. Who do I call? What do I say? Is this really happening? I managed to reach nearly everyone, or at least someone who could call the rest. The family was on its way. I popped into the room to check on how things were going. There were many doctors, nurses and I don't know who else. I remember hearing wheezing, loud wheezing - how long could he wheeze like that?

The room was full, I swear every square inch held the feet of a nurse, doctor or technician. The calmness in the room betrayed the serious of the situation. They were busy. Very busy. Fear started to creep in. But mostly, it was surreal. How does he go from looking so well to being this critical? It made no sense to me. This could not be the end. It just couldn't. I didn't believe it. But everything they said to me contradicted my thoughts.

When people say you may forget what people say, but you don't forget how they act, I now understand. At least on some level. I remember few words. But I remember my heart sinking when Dr H said "Come with me, let's go for a walk". And then he put his arm around me, for a brief moment. It can never be good news when the doctor, who you have only really seen once, puts his arm around you and takes you away from the room where your husband is fighting for his life. The arm of comfort did little to stop the lump from forming in my throat, and feeling like my heart had just dropped into my stomach. This could not be happening!

I suddenly felt very alone, with an emotional force field trying to protect me. "He has Acute Respiratory Distress Syndrome" he told me. "Does he want to be intubated? How far do we go with life saving actions, if we get there." My face must have told the story of how much I disbelieved what was happening. Dr H said "Do you understand what I am saying?". I insisted that Callum deserved a chance - after all we had gone through we couldn't give in that quickly. Dr. H kept saying - "as long as it's reversible. You want us to do everything, as long as it's reversible. " I had to ask - "when do we find out if it's reversible?" Within a few hours, I was told. And then he said he really felt I made the right decision. So, the fight for life continued.

And I was still alone. I think. I called some friends to come and sit with me until family could get there. Were our friends there at that time? I don't think so. The fog in my mind was thick. Some things are not in logical order in my mind anymore.

I am sure Callum knew things weren't great when he saw our friends in his room. But nothing was as scary as the look on his face when his brother G came in the room. When Callum looked at him I could see extreme fear on his face - that he was now really afraid of how serious was his condition. Oh, how I wanted to take it all away, to just "kiss and make it better.". Again, my heart fell into my stomach. He had many visitors that night. The nurse on duty in his room was so patient and understanding, but by 3 am he was emphasizing the need to let Callum rest.

Thank goodness by that time we had made it through a lot of the major crisis.

I never thought that things could end that way. We are not ready for that. It likely seems like a contradiction that after this length of time to say we are not ready to face that final journey. But we aren't. We are to have more time. Things are to happen in stages. We are to have warnings before we were having to make those decision. As I told people that night, and the days following, "I am writing a book and this is not how it ends.".

There is much more to say, but that is enough for now. For those who are reading this but don't know, Callum is home now and on his way to a great recovery.

That is enough for now. I will continue in the next day or so.

TTFN