Weekend away

We decided that the time had come to take a weekend trip. We were both feeling some cabin fever, and we wanted to see Steve & Amy before they go travelling, so we decided to go to the cottage with them. We drove up Saturday morning, a beautiful day with temperatures in the 50's.


It's a four hour drive so I was a little apprehensive about spending so much time sitting up. We surrounded me with pillows and the car seat reclines really far back so the trip wasn't too bad. Once at the cottage I headed straight for the big leather recliner in the living room which became my spot for the weekend. For the rest of Saturday I was OK but on Sunday I had to spend most of the day in bed. Monday morning we drove back and stopped at Dad & Donna's for lunch and a short visit, and then back on the road for the rest of the drive home.

It was wonderful to have the change of scenery for a few days and to get in a visit with some of our family, but I don't think I'll be doing it again soon. Here is a photo of me reading in the big leather recliner on the weekend.

Cycle six, day 4: last chemo

I had my last day of chemo today. I will have one more Neulasta shot to help my immune system, and I will have a CT scan in mid-April to check that the lymph nodes are still in the normal range.

I suppose that means that I am now post-treatment, and it's a little bittersweet. I'm happy that I no longer have to go for regular needle pokes for the chemo, and for sure won't miss the extreme fatigue that was part & parcel of my treatment. But the end of treatment means that my body has to fight the cancer on its own now. According to my oncologist, I will know in three months if my body can now produce normal blood cells on its own. I will go for monthly checkups for blood work to see if my body is co-operating.

Given that my cancer is incurable, I can expect to undergo treatment again at some time in the future. When I become symptomatic again, as long as it is two years or more from now, I will be able to have the same chemotherapy regimen, that is Fludarabine with Rituxan (FR). This would be a bonus because I tolerated this treatment well, other than the fatigue. If I regress in less than two years, then I will have to move on to a more toxic regimen like CHOP-R, or CVP-R, which create stronger side effects like fatigue, hair loss, nausea etc.

My oncologist told me not to expect my energy level to return to normal for at least three months after treatment ends. I'll be counting starting now.

Roswell Park Cancer Institute lobby, where they have musicians live every day.

Cycle six, day 2: Fludarabine

Today was the second day this week I went for treatment. We get up at our usual time and leave as soon as we are ready, as the infusion centre does not make us wait on our appointment time, but schedules me as soon as I arrive. As a result, sometimes I am getting my chemo even before my appointment time! As Fludarabine is a short treatment, only about a half an hour, we were done before 11 am and did some errands on the way home.

I feel very well. I have no side effects as I did during the earlier infusions of Fludarabine when I had very sore arms and shoulders. I suppose my body is getting adjusted to the drug.

They tell me to drink lots of water to keep my body hydrated and shorten any possibility of kidney damage from the chemo, and I find that the hardest thing to manage. I've started keeping cases of water in my bedroom and drinking a bottle as often as I can, but I am not naturally a thirsty person and I find it hard to do. I've been trying flavoured waters to add interest and am currently drinking green tea with rasberry, a little sweet but a nice change from plain water.

Today I went for a walk to the mailbox, not a long distance but a pleasant walk on a warmish day. I am hoping to get out every day now that the weather forcast is for 50 degrees plus over the next week or so.

Cycle six, day 1: Rituxan

I went for Rituxan today and all went well. I asked for a room with a bed and had to wait for another half hour for one to become free. I need a bed to lie down bacause I have to take Benadryl pills before the Rituxan infusion to control the allergic reactions like chills and shaking, and it always makes me dizzy. The Rituxan infusion lasts about three hours and that is a long time to sit up in a chair if I am not feeling well.

There are rooms around the sides of the infusion area that are more private than the cubicle I normally get and mostly have beds as well as reclining chairs. The room was very cold and so the nurse brought me three blankets, one after another, to help keep me warm.

Today was the beginning of my last cycle of treatment. I am looking forward to it all being over and done with, so I can get back to living my life.

Dufferin Islands nature walk

We've had a beautiful weekend here in Fort Erie. It was sunny and warmer than normal.

Art & Wendy and Andrea and Erica came to visit and stayed overnight. They brought a wonderful dinner of ribs, salad and cranberry crumble for dessert. Art helped Barry move a new basement fridge inside, as the old one broke down.

On Sunday, Barry and I went out for a drive along the Niagara River. We decided to stop and walk around the Dufferin Islands area, with its waterfalls and ducks. There was still ice amongst the tree roots in the marshy areas even though it was so warm.

I was able to do a fifteen minute walk! It was astonishing to me to be able to walk so far, especially since I have had a cough virus for the last week. It was so nice to be able to do something normal, and with the sun shining and families out with their children for a stroll, it felt like spring.

Visit from family

We had Cristen, Lucia and Emma come to visit for five days. They were on their way from the UK where they are living for four months, to Puerto Rico to attend a conference with Daddy. They built in a few days to visit with us while Daddy took care of some work obligations in Ann Arbor.





Lucia watching Diego videos in Grandma's chair, using all my pillows including the one I use to support my neck.

Coffee Break

Because of my chemo sessions, my life is very different nowadays. I am fatigued much of the time, and my 'up' time on any given day is limited to a few hours. Going out now means the occasional trip to the grocery store, or Wal-Mart or Home Depot, all of which have electric scooters available.

However, when we do go out, we sometimes stop for a cappucino treat. There is a great Williams Coffee Pub in Niagara Falls that has the best cappucinos, if we have to go to NF. There is also a new Coffee Culture in downtown Fort Erie that has excellent desserts, as well as comfy leather armchairs and great coffee. Otherwise there is Starbucks in most places. When we stop for coffee we feel as if it is a normal day, and we can pretend for a few moments that life is the same.

Cycle five, day 9

On Tuesday I went to Roswell Park for my monthly shot of Neulasta, to help my white blood cells grow. It's becoming pretty routine. I didn't need a blood transfusion, and in fact, I haven't needed one since cycle one. That means that my hemoglobin is staying above 8.0 g/dl. In fact, it is generally above 10.0 g/dl, and while that is still below normal, it's a good sign.

We are also having a visit this week from Cristen, Lucia and Emma and that is keeping us pretty busy. They were all suffering from jet lag having just arrived from England. The kids were waking Cristen up at 3 am as they were still on UK time. Lucia is 3 years old now and seems much older. Emma is 6 months old and a very alert and calm baby. I'll post photos later.