The Christmas Bell

Well, I just got back from my treatment tonight and I'm feeling pretty good. Wednesday and Thursday were a little rough probably because I had the week before off but now I think that my body is getting used to it again. I only have 2 left and then I get 10 days off. I'm pretty pumped about this - just in time for Spring Break!!

I want to rewind for a minute back to just after my surgery. I forgot to tell you the best Christmas story! A few days after surgery I was recovering at home and the boys were being so loveable and helpful. They really wanted their mom to get better soon. They would all come into my room regularly asking me if I needed anything. Gavin came in one day (he's 8) and when I told him that I was fine he ran out to our Christmas tree and brought me back a little jingle bell ornament. He told me that all I had to do was ring the bell and he would come check on me. So cute! So the next day I was getting something off my bedside table and I knocked the bell to the floor. Well, all of a sudden I had my three boys running into my room to see what they could do for me. When I told them that I had knocked the bell off accidently and after convincing them that I really didn't need anything they went back to what they were doing. I have the 3 most wonderful boys!! They have really helped me through this giving me ample hugs and kisses!

Anyway, better get to bed and cozy into my electric blanket before the chills start. I will be giving my boys extra hugs tonight!!!

Gamma Knife

Well, it was time for gamma knife surgery to clean up any cancer cells left after surgery. Apparently, there are microscopic cells left after a surgery like mine that they want to get rid of before they grow into another tumour. Gamma knife is sort of like radiation but not. It is when they use tiny gamma rays, all focused around the tumour so that they meet right at in the middle. This minimizes radiation exposure so that they can use very high doses which is what melanoma responds to. Melanoma is not treated with your typical radiation because they can't use the high doses that they would need to without damaging the brain too much. I was admitted at 5:30 a.m. that morning so I was more than a little bit tired. I actually got a pretty good sleep that night even though I was a pretty anxious. There were 5 of us all waiting for gamma knife and when the nurse came to walk us down I couldn't help but laugh with Christine (my sister). I felt like we were walking the green mile or something. We were all walking single file behind the nurse and it made me feel like we were prisoners on our way to meet our destiny. Never mind in the waiting room when a discussion took place about "What each of us were in for". I guess you had to be there...

Anyway, I got my IV put in (something that I was getting very used to by now). And next it was time to get my headgear on that I would wear for most of the morning. Two doctors attached this Hannibal Lector looking device to my head. They cursed my hair as they did this because it was getting in their way. Eventually they got it secured and yes they did use a local anesthetic to make me more comfortable. I got wheeled out into the waiting area and the next patient got called in. Of course they were all asking me how it felt and if it hurt. I felt a little weird being the only one with this contraption on my head but soon enough we were all looking the same. We looked like we were going to a Star Wars convention or something. Christine took pictures, of course, this was a Creative Memories moment! Now I got wheeled down to MRI for my scan. They attached a box onto my headgear and secured me to the machine. What a weird feeling! I started thinking..... What if there is a fire and they forget about me? or what if Jason with his hockey mask comes in? There is no way that I could get out on my own. I was feeling very helpless laying there and just wishing it would be over quickly. Then I went to the spa. This is a place I go to often in my mind. I start thinking about being in the mineral pool, relaxing and all of a sudden I am there. It really does work for me and I forget about all of my fears.

Next, it was time for my head CT and this was much quicker and not as uncomfortable as the MRI. Getting around with this contraption on was something else. I got up to use the washroom and the weight was unreal. I made it through the doorway without hitting my now giant head! When I got back to the gamma knife area the doctor brought around doughnuts for all of his patients. What a nice guy! Or maybe this is his bribe for letting him do this to us?! Whatever, I love doughnuts!!! Being in the gamma knife area was such an amazing experience. It was so quiet and peaceful and really made you feel at ease. They had nice spa music playing and the staff was so relaxed.You could tell that they all really like working there. The team there figuring out my treatment plan was a Radiation Oncologist, a Neurosurgeon and a Physicist. They each had their own specialty and I completely trusted them. I was then secured to the bed by my head contraption so that I wouldn't be able to move my head and they began my treatment. This lasted for an hour and I did not feel a thing the entire time. It helped that they let me bring in a CD to listen to during this time. I brought in Jann Arden of course. (I love her!) My sister and I had gone to see her the end of November and we had a great time. Even with seeing two of Jann and hearing some static in my ears it was awesome! I can't imagine going now that I'm feeling better! So they acutally play the music through the gamma knife machine speakers! It sounded great!

After the hour they came into get me. As he was taking off the head gear that was I used to wearing at that point I felt relief at first, then the headache started. They apparently call this a rebound headache and some people get this when all of the pressure is released by removing the head gear. This lasted about 30 minutes and after some Tylenol and a little rest I was fine. Ready to go! My Aunt had come to check on me and we had a bit of a visit before we left. I felt bad as I left everyone else waiting for their turn with the head contraption on. I was lucky to be the first one in to get it over with but felt like I was deserting my fellow Star Wars fans. I met a really nice lady while we were waiting for our MRI so she called me over to ask about how it felt and what it was like. She had been getting brain tumours since she was in her 20's and had many different treatments to get rid of them. This was the first time for gamma knife and I could really see what an amazing gift this is. Gamma knife saves people's lives and we are lucky enough to have one in Winnipeg. We also have very talented Doctors who are specialized enough to use it. All I had was 4 tiny holes where the pins had been placed! Much better than surgery! I am very thankful for this!!

Treatment

I was pretty amazed at how quickly I healed from surgery - so was everyone else. We got together with a lot of family over the holidays and everyone was so surprised at how normal I looked. I was feeling a little "different" than normal. Everything around me was so different. I could see so much better and everything looked so much brighter and clearer. My hearing was intensified - I felt a little like I had super powers. I'm not sure if this was from having surgery or getting used to not having the tumour anymore. I did have major issues with my depth perception. I kept banging my head on walls and doors for some reason. I was walking around with a goose egg on my forhead for weeks just like a baby learning to walk. Jeff found this quite amusing! My sisters and I had been going to our local gym and working out for months so within a couple of weeks I decided it was time to get back into it. I could only walk while they ran beside me but it was so nice to get out of the house and get some exercise. Another couple of weeks and I would be running beside them. I really cherished this time with them and was so happy that I was well enough to do it.

I went in to see the Oncologist at the end of January to get all of my results back. I was so nervous to hear what he had to say. During every test that I had, I was trying to read the technologist to see if I could feel some vibes from them. Was it normal? Was something there? It didn't work! I couldn't tell at all what they were seeing. They did call me back in after my PET scan for an MRI of my liver which was very worrisome. But I stayed positive and really believed that it would come back as nothing. So when I went in to see the Oncologist, he let me know that the only thing abnormal that they could find was a little spot on my lung. Everything else was clear!!! What a relief! The spot on my lung he wasn't sure whether it's cancer or not so I will have another scan in three months to see if it has changed in size. It was sort of bitter sweet hearing this news. At least there wasn't any other large tumour anywhere like they initially thought! This proves that the brain tumour came from the skin lesion I had years ago. This means that I have Stage IV metastatic melanoma NED. (No Evidence of Disease) Therefore, there is treatment for me.

We discussed treatment using Interferon and he explained what this would involve. I learned that this treatment was very contraversial and so were it's results. I had a lot to think about in the next few weeks and I had to get ready for Gamma Knife Surgery the following day....

Ready for Christmas

After I got lots of hugs and kisses from my boys it was time to have a little rest. Christine was here looking after me and making sure that I was all right. It wasn't long after I got home that I started thinking that my doctor was crazy. The kids were running around yelling and playing and I really was not feeling well. My head was pounding and the noise was just making it worse. I started thinking that maybe it was too soon for me to be at home. This really only lasted for about a day until I got the pain under control and the boys realized that I was really not feeling good so they were much quieter. It was almost Christmas though so they were very excited! I was determined to make this the best Christmas ever! We never know what is going to happen tomorrow so we need to really live for today.

We spent the next few days getting ready for Christmas. I remember walking in Walmart and having the most bizarre feeling. One minute you're carrying on with your daily life, the next minute you realize that you may not be here tomorrow, then you're walking in Walmart shopping as if nothing happened. People were rushing around smashing their carts into each other and I'm thinking: Relax people! Life is short! I actually met a woman in line who had just survived a heart attack. I let her ahead of us becuase she only had a few things and we started talking. When I told her that I had just had brain surgery she was shocked and we talked about how you never know what other people are going through.

I then got a phone call from the medical oncologist's nurse. He wanted to see me before Christmas so two days later I was in his office. This is when we found out that maybe the cancer hadn't spread from somewhere else. Maybe it had been from the skin lesion that I had in 2001. When I was pregnant with Gavin I had a mole removed from my temple. I really wasn't worried about it. Then I got a call from the surgeon who removed it and he wanted to see me in his office right away. It was my last day of work before going on maternity leave. This is when I found out that it was melanoma and they needed to do a wide excision after I had the baby. I have been seeing an Oncologist at Cancer Care ever since and there has never been anything else to worry about. Usually, the type of lesion that I had would be removed and that would be the end of it. After 5 years of follow up I was reassured that since it didn't come back within this time frame it wouldn't come back. I was still receiving follow up as they were looking for a new lesion. We were thrilled to find out that maybe the brain tumour was from my previous skin lesion! Maybe it wasn't what the Neurosurgeon initially thought and the cancer hadn't spread through my body. This was very good news for us. The Oncologist also let me know that he was going to be taking good care of me and that made me feel so much better. We talked with him for about an hour and I was so relieved when we left. He was scheduling a battery of tests to see where exactly the cancer was.

Over the next few weeks I would have a full body CT scan, a PET scan, a bone scan, an MRI of my chest and lots of blood work. This was the hardest part for me. Waiting for all my results.....

Discharged home

My mom and I spent alot of time talking during the night. We were both still in shock over what was happening. I couldn't sleep anyway because of the neurological checks, they were waking me up for every half an hour. I passed them all with flying colors. Yes, I knew what my name was and where I was. I did experience some pain once the general anesthetic had worn off but after a bag of codeine and some T#3's I was comfortable. The morning came and it was time for the doctors rounds. This was an interesting experience! They sort of talk about you like you're not there and there were some words between two of them which weren't very nice. I felt like sticking up for my surgical resident and saying excuse me. He just saved my life. Leave him alone!! But I stayed out of it and just listened intently to what they were saying. It sounded like I was doing really well. I would be going down for a CT scan for them to see how things looked. My surgeon came in a little while later and he looked a lot happier than the previous day. He said, "Ready to go home?" Are you kidding me? I would love to go home and see my boys! I thought at first that he was joking but no, he was completely serious. Wow! You can have brain surgery then go home the next day?! I stayed longer in the hospital when I had Kaden.

The surgeon then noticed Michael (my brother-in-law) standing there with his coat on that reads: Gift of Life Program. Michael works for this program coordinating transplants. My surgeon had a very confused look on his face. He kept looking over at Micheal, then over at me. I told him that this was my brother-in-law and then he understood why he was there. Not to take my organs! As he was leaving to arrange my discharge he says to Michael, "You just leave her alone." It was so hilarious! We all couldn't stop laughing. He has a great sense of humour. I love that! Not everything has to be all serious all the time. I have laughed a lot through all of this. It makes me feel so much better. So the saying must be true: Laughter is the best medicine.

I got all of my tubes and lines out and went down for my head CT. It wasn't long when I came back up that they had the results and everything looked good. The physician's assistant was super nice and even showed us the before and after CTs. It was so unreal to see the first one where there was a huge tumour and then the after where it was just gone! I had some breakfast and then that was it - I could leave. When Jeff came in he was surprised, to say the least, that they were letting me go. They had initially told us that I would be in for 3 days. I was very anxious to get home though. There really wasn't anything they could do for me that I couldn't do at home. And this was during the H1N1 outbreak so I really just wanted to be at home. As Laura was wheeling me out everyone was waving and wishing me all the best. We have so many caring and compassionate health care staff. As I was being wheeled out that day I was so full of joy. I felt so thankful for everything in my life and I couldn't wait to hug my boys!

Our Christmas Miracle

This is the most amazing part of my story and I hope that I can describe it as being the magical experience that it was. I was transferred onto a stretcher and made comfortable by my nurse. She had never met me before yet she was so caring and compassionate towards me. We talked about why I was here and I saw the sadness in her eyes. I would get used to "the look". The look that I would get many, many times in a day. The look that I would respond to by reassuring people that I was going to be fine. It was OK - I was going to make it. The resident anesthesia guy and the anesthesiologist came in to talk to me. I went through my diagnosis with them and again why I was there. I saw the look again. I explained that I was going to be OK and that I was strong and healthy. The anesthesiologist commented on how great it was that I was so positive and that a great attitude makes such a big difference. He told me that they were going to take very good care of me and I knew that this was true. I put all of my faith and trust in them. After they left to go and get ready for surgery the nurse came back to get me. I asked her if they put a little something in my IV because I was surprised at how relaxed I felt. No just my antibiotic and my drug to bring down the swelling in my brain. Wow!!

As I was wheeled into the operating room I was sure that I had entered another world. It was like a time warp into the future. Everything looked so high-tech and complicated. The OR was amazing looking! The surgical resident came over and introduced himself and let me know he would be operating on me with the Neurosurgeon. They started attaching some equipment to me and that was the last thing that I remember. I was out! So during the next 1 1/2 hours I was unaware obviously of what was happening. My family, I found out later, was being kept up to date with how things were going. We had an angel in the OR! This is when the miracle happened..... The surgeon came out to let my family know that they got it all. The tumour was gone. It ended up being bigger then they thought - about the size of his fist. But it was gone! I woke up in the recovery room and the surgeon came in to let me know the good news. Although he had the most serious look on his face the entire time. Yes it was the melanoma - cancer but all I heard was that they got it all. They allowed Jeff and my mom into see me. I knew it was good news as soon as I saw their faces. Happy!! All of the prayers and good thoughts worked! The surgery was a complete success. It couldn't have gone any better! We were so happy and so was the surgical team. It was like everyone was celebrating this victory! A miracle!!

I had no ill effects from this surgery which was another reason to celebrate. A lot of times brain surgery can cause other problems but I had none. It truly was a miracle! I did NOT have to have my head shaved because the surgeon just parted my hair at the incision site and clipped along this line. You couldn't even tell. They even washed my hair before I woke up!! Unbelievable! I got to visit for a few minutes with the family before having a rest. I was actually feeling pretty good considering I was just waking up from brain surgery. I even had a nice chat with the nurse about her husband who also has melanoma. He had a skin lesion years ago and thankfully has been fine ever since. It's amazing I find how you can connect with so many people when you can relate to their experiences. I spent a few hours in the recovery room before being transferred to the step down unit where they would monitor me closely overnight. My mom stayed with me over night to help take care of me. I am so fortunate to have a mother that loves me with such intensity. I know that she will always be there for me - no matter what. This is part of the magical feeling that I have experienced. I could feel so much love from all of you! The emails, the phone calls, the notes and cards. I really could feel it all from you and it gave me so much strength and determination! I am thrilled that I have so many people fighting along beside me and I thank you all for this!

A break from treatment

Hello everyone. I received some disappointing news today from my nurse. I have been taking a biological therapy treatment for the last 3 weeks. They are stopping my treatment for a week because of my blood results. Apparently my neutrophils have become too low and this leaves me vulnerable to infection so we have to take a break. I was so looking forward to finishing up this last week before going on the self injections. I'm really looking forward to getting my PICC line out. I almost burst into tears on the phone with her this afternoon. I guess I'm a bit of an over-achiever. I wanted everything to go perfectly. Now things are delayed by a week and next week when I start up again they can only give me half of the dose. Will this affect the end result of taking this treatment? Just one more question to ask my doctor and I already know what the answer will be. "We don't know". There is so much unknown about this disease and the treatment for it that I find so frustrating! I should listen to Jeff. He says that maybe a break would be good right now. Give me some time to recuperate and get feeling better before starting up again. He's probably right.

Anyway, back to my story......

It was time for surgery and I had to face all of my biggest fears. What was going to happen? The boys went to school as normal on this day. We really wanted to keep them in their routines as much as possible. They are surrounded by very caring, loving teachers and staff at their schools which I took for granted before now. I was nervous but like I said I felt a calmness come over me. Waiting in the day surgery area was not much fun at all. The receptionist there was very loud and obnoxious yelling at everyone. Jeff and I went for a walk to get away from all the craziness. It was making me very uptight and stressed. I really think that when you're waiting to go in for surgery, whether it's a toenail removal or brain surgery that they should have a nice, peaceful area for you to relax. Maybe some nice spa music and soft lighting. Anyway, I still have to write my letter to the hospital making these suggestions. This was the one and only negative part of my experience at HSC so I guess I shouldn't complain. I was surrounded by family while we waited for my turn. Jeff, my mom, Christine, Laura and my Auntie Debbie were all here to visit with me while we waited. My dad stayed back at home to pick Kaden up from school and look after the kids until Jeff got home.

As the hours went by I started to get more and more panicked. My surgery was supposed to be hours ago but apparently they had changed the time and didn't tell us. They also ran into complications during the surgery before mine so it was delaying things. I was hoping that this unknown person would be alright. I tried remaining patient as a good patient should. I'd rather the surgeon take his time and maybe even have a little rest before beginning my surgery. Then I saw him.... They wheeled a patient in on the stretcher across from me and I knew right away that it was him. My Grandpa!? I could not take my eyes off of him. I knew that it couldn't really be him as my Grandpa had passed away years ago yet here he was in front of me. He looked over at me with the same smile I recognized from when I was a little girl and he nodded his head as if to say to me, "Everything's going to be OK, sweetheart." I looked over at my mom and she was just as shocked as I was. So it wasn't in my head. She recognized him too!! I could not look at anything other than him. The doctor came in and gave him some bad news and his daughter started crying but he was still looking over at me smiling and nodding his head. A thought popped into my head. Was he here for me? Is this what happens? But I knew by the way he was looking at me that no he wasn't taking me anywhere and I was going to be OK. It was a sign that I was going to be looked after by my loved ones. My mom and I talked about it later and she felt the same way that I did. Peaceful, calm, and reassured.

The nurse then came in to let us know that they may have to postpone my surgery. What??!! We were all not happy to say the least. Postpone until tomorrow? This would mean that I would have to go home for the night and go through all this again the next day. No way!! No one was very happy about this. Not long after her announcement she came back in to say that the surgeon was ready for me. Thank goodness. Back to feeling calm again. As I am wheeled through the halls everything was a blur. Literally, because they had taken my glasses from me. I couldn't see much of anything. The boy pushing my wheelchair looked no older than Tyler. He stopped so that we could all say our goodbyes - for now. We all ended up in tears and I had a hard time letting go of Jeff. The boy continued on down the hall and through the doors into surgery........