Skin Cancer

When my family arrived in Canada from England when I was 10, we were excited by the warm sunny weather and went camping every weekend. Nobody bothered with protecting yourself from the sun in those days, so we all got sunburned every weekend and peeled all week. In retrospect, not a good decision for a family with fair skin.

As an adult, I was diagnosed with my first basal cell carcinoma at the age of 41. Actually I had four removed that year, some quite large as they had been undiagnosed. Subsequently I had one or two removed each year, and after a dozen or fifteen I lost track of how many had been removed. I haven't had any removed for several years now.

However, I have had a sore spot on my nose for several years that two dermatologists didn't see any reason to treat. As some skin cancers do, it would bleed a little, scab over, and eventually go away, only to reappear a little larger a few months later.

This past fall, I decided to try a new dermatologist, and since we are now using our U.S. medical insurance, we found a good dermatologist in Buffalo. Upon examining my nose, his comment was "I can't believe any dermatologist let this one get so big!" He said that it was too big to cut and stitch, as there isn't enough skin on the nose to do this. He would have to scrape and burn the tissue, and might have to go deep to get it all. I was upset, but he explained that I could put off the surgery, but it would only get bigger.

He injected an anaesthetic into the area and proceeded to operate. Barry held my hand throughout. The doctor promised to let me know the results of the biopsy and scheduled me for additional surgery for the removal of two other smaller ones on my body in a couple of weeks.

I didn't see how big it was until that night when I changed the dressing. It's about 1/2" across and a definite crater. The doctor hopes it will be fully healed in several months.



Curiously, when I applied for life insurance five years ago, I was initially denied because of my history of skin cancer, even though basal skin carcinoma is not a life threatening cancer as it does not metastasize throughout the body. I sometimes wonder if the actuaries knew of a connection between my skin cancers and my current diagnosis of Non Hodgkins Lymphoma!

Afternote: the biopsy came back as actinic keratosis, a pre-cancer. It's healing well although I still have to keep it covered all the time.

9 month checkup

It's been 9 months now since I finished 6 months of chemo, and 16 months since my diagnosis. At my checkup last week we heard that my fifth CT scan the week before was normal, and that although my hemoglobin and white blood cells are still low, that this is normal for this stage of my recovery. My Lymphocytes are still low, but my neutrophils are in the normal range, and this is an important indicator. Dr R. indicated that these levels are my new normal and that I should just keep living my life and not think about cancer.

I think that I am getting stronger every day now that the jet lag is over. I'm back to yoga and QiGong at Wellspring every week, and I can now do errands around town on my own. Although I still tire easily, I feel much more like normal. I actually sewed a pillow cover for my granddaughter this week.

Thank heavens I met so many people through Wellspring who told me it would take at least a year to fully recover from chemo, or I would have worried even more than I did.

Home again

We're home now. We waved goodbye to New Zealand with regret, having had such a lovely 7 weeks there. The weather was variable, as spring weather usually is, but having said that, I wore sandals instead of shoes most days, and only once had to wear my heavier rain jacket with fleece underneath. We did seem to get more than our share of wet, windy weekends though (but I'm not complaining).

We didn't explore as much as we usually do, mostly because of my fatigue level, although we did try to walk most days. We had some very windy days when it was uncomfortable to be outside at all. I found travel days very tiring, and didn't do any driving over there by myself as I usually do.

We had a few hours in the wonderful Koru Club Lounge at the Auckland Airport before our flight. Not only was the club large and quiet, but it had individual newly remodeled bathroms with showers, all amenities provided, and also free 20 minute back massages in a private suite. We both took advantage of the showers and massage. A constantly replenished buffet, free drinks and free wireless were all part of the service.

We were able to change our seats in the business class upstairs seating area of the 747 so that they were one in front of the other, much easier for quiet conversation than the across-the-aisle format of the flight going out. I had my bed set up as soon as we were at cruising altitude and took my meals at Barry's table, going back to bed between courses. Travelling business class really spoils one for future airline travel!

Another bach

On our last full weekend in NZ, we rented yet another bach on the Kapiti Coast, just an hour north of Wellington. It must have been someone's home at one time, because it was huge, 3 bedrooms, a master bath ensuite, a glass enclosed vine covered outdoor eating area, and the usual kitchen, living room and dining room , in a bungalow on 3 acres with a view of the ocean. It was a rainy, misty sort of weekend, and Kapiti Island kept appearing and disappearing out of the fog. We thought we were on an episode of 'Lost'.

There was a narrow track through the beach grasses and over the dunes to the beach, long and flat and dominated by the island off the coast. This was the most isolated bach we have stayed in, and we'll go back again if we can.

Mataikona bach

New Zealand apparently has almost as much coastline as the continental U.S., although it is only the size of Colorado. It is said that no place is more than 47 minutes from the sea, close enough that anyone can drive to the beach for the day. Still, there is nothing like watching the tides coming in and out from your front window.

As we have travelled around New Zealand, we have found that on our free weekends we prefer to stay in rented cottages on the coast with sea views. We research them on the internet, and so far each bach has lived up to our expectations. We arranged for three nights at this typical bach on the ocean.

It was a very windy weekend, and on our first day there, we attempted to visit the lighthouse at Castlepoint, but the warnings were up not to attempt the steps in windy weather as it is considered too dangerous. As the sand was blowing in our faces and the wind nearly knocked us off our feet, we just drove back to the bach. The next day was quieter and we were able to walk up the narrow path and stairs to the lighthouse and beyond. Barry took this fabulous photo of the lighthouse and the barrier reef and lagoon beyond.

We were slightly discomforted to discover that from Castlepoint to Mataikona is a Tsunami hazard zone.

Te Mata peak

We spent a few days in Hastings on the Bay of Plenty. There is a long windy road that leads up to the Te Mata peak, 400 m above sea level, with panoramic views in every direction, and overlooking some wineries and the bay. Parts of the road are one lane wide and are carved into the side of a cliff. I must admit, I had forgotten just how scary the road was since we were last there.

But once you get there, the view was fabulous.

Tin art

I love these metal representations of animals that seem to be all over New Zealand. These two llamas were in the town centre of Wellsford, north of Auckland.

Muriwai Bach

We've stayed at Muriwai before, 2 years ago. It's a black sand beach just 1 hour west of Auckland with a very large gannet colony. We loved the beach and walks out there and decided to go back when we had a long weekend in Auckland. We ended up staying out there for five days!

The bach we had booked before was no longer available so we rented a different one, still high on the hill above Muriwai for the best views. It had amazing views from the living room and the bedroom. It too, had a long flight of stairs to get to the front door. And then a flight of stairs to get to the main living level. Then another flight of stairs to the loft master bedroom and ensuite. I didn't need any additional exercise while we were staying there.

Boating in the Coromandel

As I mentioned before, boaters take their boats out into the ocean by way of ramps into streams or bays. Here is a line-up of boats we passed one afternoon as we were leaving the Coromandel Peninsula all waiting patiently to get their boats loaded onto the trailers and away.

The Driving Creek Railway

During our two weeks in the Coromandel Peninsula, we decided to take a trip along the Driving Creek Railway, New Zealand's only narrow-gauge train ride.

The one-hour return Coromandel train ride takes you through replanted native kauri forest and includes two spirals, three short tunnels, five reversing points and several large viaducts as it climbs up to the Eye-Full (!) Tower at the top of the mountain.

The railway was started in 1975 as a way for the owner to get native clay and pinewood for his potteries which were at the base of the mountain. After 15 years of construction he decided to open his railway to the public, and has built three passenger trains and extended the tracks every year since then. As they harvest the pine trees which were planted by early settlers, they are replanting native Kauri trees which would once have covered the entire area in huge forests.

Check out this web site for an animated clip of the train route: http://www.drivingcreekrailway.co.nz/Train_Ride.cfm

Tractors in Opiti Beach

On our first weekend at Matarangi, our friends Harley & Lilian came up to visit. As they are familiar with the area they took us for a driving tour. We went out a long windy narrow road to the beach community at Opiti.

Especially in the beach communities where we like to stay, boats are everywhere, but because New Zealand is surrounded by ocean, and there are tides, people generally do not keep their boats tied up at docks. Cities have marinas, but otherwise, they take their boats to the beach or boat ramp every time they want to go out on the water. Sometimes its quite nerve-wracking to come around a corner on a narrow road to be faced with a car towing a behemoth boat to the nearby ramp.

Opiti was unusual for us, in that every home or bach seemed to have an old tractor parked in the yard. We watched a tractor pull a boat trailer up a narrow stream crossing the beach to where it could access the road. Harley explained that people do not like to put their cars in the salt water so they will keep a tractor at the bach to tow the boat and trailer to the beach. One house had two tractors in the yard.

Texas to New Zealand

From Austin we travelled to Auckland, New Zealand. We were quite concerned about the fact that it is two flights from Austin to Los Angeles, and then a 13 hour overnight flight to Auckland. This is a trip that is exhausting at the best of times, and we thought that it would be very difficult for me. We decided that this once we would fly business class for the last leg, from LAX to Auckland.

Because we flew business class we had access to Air New Zealand's first class lounge in LAX, the Koru Club. The best thing about the Koru Club is the beautifully appointed private showers. After a long day of travelling, they were just the thing to freshen us up. Towels and shampoo are provided. The lounge has comfy leather armchairs, free drinks, wireless internet and a never ending buffet for light meals and snacks. Our flight left at 10:30 pm Pacific time, which is 1:30 AM Fort Erie time. A very long time indeed!

Air NZ has lie flat beds in business class for their Pacific flights. We were assigned seats in the upper deck of a 747. It's a small cabin, and each business class seat is angled away from the window and toward the centre aisle of the plane, with a low wall around it, so every seat is private. You can't really talk to your neighbor, and in fact Barry and I had seats in the same row across the aisle from each other so we could see each other but only communicate non-verbally.

Because the leather seats have an airbag in the seatbelt, you can recline while taking off and landing. You can choose to have an early meal instead of the full dinner service and go to bed soon after takeoff. When you are ready, the attendant will unfold the seat into a long, narrow, although firm, bed. There is a cover for the bed, and a pillow and duvet for warmth. The personal TV pulls out from the wall so you can watch it from the seat or from the bed.

We did stay up for the dinner service, so it was more like 3:30 am Fort Erie time before we were able to lie down to sleep. If I ever take this flight again, I will take the light meal and go to sleep sooner.

We slept well, although Barry woke earlier than I did, as he usually does. I got a full 8 hours, waking just as the breakfast service was coming around.

The day of our arrival was long as well, because we had to pick up our rental car, go grocery shopping and drive 3 ½ hours to the bach in the Coromandel Peninsula which would be our home for the next 12 days. We were both grateful that we had had so much sleep on the plane. I was very tired by the time we got there, and in fact I spent the next couple of days resting.

A visit to Austin

On October 13 we flew to Austin, Texas for Barry to present at a conference. It was the first time I had flown in over a year, since well before my chemo, and I was nervous about the length of the trip. We flew from Buffalo to Washington DC, had a layover in Washington and then flew on to Austin. With a taxi ride at both ends and the layover time, we were travelling for almost ten hours. I had a rest when we arrived and still had energy to go out to dinner with a friend.

Although Barry was busy with the conference we went out to dinner with friends every night. The weather was over 90 degrees during our first few days and I spent some time around the outdoor pool. The Hilton is close to downtown and there were many restaurants close by. We also walked by the river most days. Here we are having dinner with our old friends Rodger, and Ray and Elsie.

One of the most interesting things about Austin is the bat colony that roosts under the Congress Ave bridge. It is the largest urban bat colony in North America and every night around sunset the entire colony of about 1.5 million bats erupts from under the bridge in dark streams. Hundreds of people go there every evening around sunset and wait for up to an hour for the bats to appear. The night we went the bats erupted quite late but we were able to get a spot on a dock downstream from the bridge and saw the bats clearly against the night sky.

First Anniversary

Today, September 26, is the anniversary of the day I was diagnosed with Lymphoma. Every cancer survivor remembers that date forever. I remember the doctor's appointment as if it were only yesterday, and yet I have experienced so much in the year since.

We went out to dinner that evening because we were so late leaving the hematologist's office. It was a Friday, and the hematologist wanted me to start chemo on Monday. He kept talling about my disease, and not until directly asked did he admit that it was cancer. We were numb. We ran into some friends in the restaurant and didn't tell them. We didn't know what to say, couldn't process the information.

We spent the weekend on the web, learning all we could about this disease. We phoned the kids. By Sunday we had talked with another oncologist and plans were underway for a second opinion. We began to learn all we could about our U.S. medical insurance that we had rarely used, as the new oncologist was in Buffalo NY. We researched all the possible chemotherapy regimens for my disease, and the side effects down the road from them. In the end, I started chemo a month later at Roswell Park in Buffalo, with a different chemo regimen than the first hematologist had suggested.

Once the chemo started, I had no energy to do anything, and found it difficult to spend time anywhere but my bed. It's hard to remember now, but I would go downstairs but once a day, for dinner, and often had to go back upstairs to bed before dinner was even over. I didn't have the strength to hold a book in my hands and so borrowed lots of audiobooks from the Library and other sources. I didn't have the strength to sit up in the living room to watch TV so Barry bought me a TV for the bedroom. I didn't have the strength to stand in the shower and so we bought a shower chair that I could sit in while showering.

Many cancer survivors look beyond the medical profession for help, and I was no exception. I downloaded Guided Imagery tapes from many sources, and listened to them for at least an hour or two each day, for help with healing images and positive affirmations. There are some that help you visualize the chemotherapy that is going into your body as a fountain of pure healing light washing away the bad cells.

I subscribed to mailing lists for people with my type of cancer, but found that the stories were upsetting to read, and after a while I had to cut back on how often I read them.

We ordered books on Lymphoma, but only Barry read them for I had developed chemo brain, a type of brain fog, and could not retain what I read (and could not hold the book anyway).

I learned that we had some really good friends and family who cared about me. I received emails and cards galore, and made up a small album so I could read them over regularly. We received casseroles and biscotti, flowers and plants, a prayer blanket, a healing shawl and two quilts from special family members.

I heard about Wellspring, an association in my very own community that offered programs for cancer survivors and their families. Although I was too fatigued to attend many classes during my chemo, as soon as it was over I signed up for yoga once a week, and then for QiGong as well. I now go 3 mornings a week for those classes and a relaxation class. Volunteers make hats and teddy bears and quilts for cancer patients to have a little sign that someone cares. There is always someone there to give you a shoulder to cry on.

I want to thank my husband, Barry, from the bottom of my heart for all the support he has given. From the very first he has held me, and cried with me, and comforted me, and driven me to all of my appointments, brought me meals in bed, cooked, cleaned, done laundry, groceries, talked to people on the phone who called to see how I was doing, while holding down a full time job and taking care of our house and yard. He is my rock.

Unremarkable results

Yesterday I went for my first checkup in two months. I had my fourth CT Scan last week and bloodwork done yesterday.

The radiology report said that there is no evidence of lymphadenopathy in my chest, abdomen or pelvis, and the the results were "unremarkable". I guess this means that nothing was found. My lymph nodes are apparently back to a normal size.

Although my hemoglobin and white blood cell count are still below normal, the neutrophil count is now in the normal range, and this is an important indicator that my immune system is doing better.

All in all, a very good checkup! I go back in January for another round of tests.

Although I have a head cold right now and am feeling under the weather, I had started to feel less fatigue, and now estimate that I am back to 80% of normal functioning.

3 month checkup: Passed!

Yesterday was the day for my 3 month checkup with my oncologist. We had been a little worried because last month's blood work showed that my white blood cell count was still quite a bit below normal, and my hemoglobin had dropped to 11.2 (normal is 12.5-16.0).

In reading the blogs of other cancer patients, it turns out that everyone who has been diagnosed with cancer approaches each follow up appointment with anxiety. The fear, of course, is that the cancer will have returned.

However, my oncologist and her P.A. were both happy with my progress, and explained that the Fludarabine I was on is very hard to recover from, and that my bone marrow is just not functioning at a robust level at the moment. Even though my white blood cell count is low, they do not want me to curtail my activities in any way. My hemoglobin is back up to 11.8, and they told me that they would not worry as long as it is in the 11.0 to 12.5 range.

I am still somewhat fatigued, but better than I was 2 months ago. Barry and I go for walks when it is not raining, and I can walk 2 kilometres or so, sometimes more. I will just have to accept that it is going to take longer than I expected to recover from the chemo.

I have a CT Scan scheduled for the end of September and that will tell us how my lymph nodes are doing.

We have been very busy visiting family on weekends and having family visit us. We've had Carol & Brian come to stay for a couple of days, Cristen & Lucia & Emma came for 5 days, Steve & Amy came for the same weekend, and Dad & Donna came to lunch on their way to her niece's wedding in Fort Erie. We've driven to Ann Arbor for a weekend, to Stratford for a weekend to meet up with Cristen, Goncalo, Lucia & Emma, to Steve and Amy's cottage and to my Dad's cottage to visit with my aunt and cousins from New Jersey. All that driving and visiting, it's no wonder I have been tired!

Several people have told me that they have worried about me because I have not been keeping up with the blog. I’ll try to stay more current from now on as I continue to recover.

Fathers Day June 09

May long weekend

This year my birthday fell on Victoria Day of the May long weekend, so we decided to go visit Steve & Amy at their cottage. The four hour drive wasn't quite as hard on me as it was when we did it in March, so I am getting stronger. It wasn't warm enough to sit outside but they have a nice sunporch where we could sit and watch the river.

The cottage is outfitted with a vintage record player and a set of old vinyl records, and we brought some more from our friend Doug to add to the collection, so we spent the weekend enjoying listening to vintage music. There was a mix of 33's, 45's and 78's. Barry was hopping up and down all weekend changing records.

Carol & Brian drove all the way from Pakenham to have lunch with us and visit on Sunday afternoon. We hadn't seen them since last summer so it was good to visit.

We left early Monday afternoon to beat the traffic, and had dinner in a Kelsey's in Mississauga. This was my first outing to a restaurant in many months. Here's a photo of my (free) dessert and the sparkler lighting it up. Our server even gave me a personalized birthday card!

Recovery week five

I'm now in week five of my recovery from chemo. It's been slower than I would like, and sometimes I get frustrated at how long it is taking me to recover. But I have to remember that my oncologist said that it would take three months for me to get my energy back and so I must be patient. I have up days and down days, and overall it's two steps forward and one step back, but I am slowly getting better.

I try to walk every day and I can walk for up to a mile on a good day. We often walk the bicycle path in front of our home, and we also like to go to Dufferin Islands and walk there amongst the streams and the ducks and geese. We have also walked parts of the Friendship Trail in Fort Erie.

Twice a week I go to Wellspring Cancer Support Centre in Stevensville for a yoga class and a relaxation class. I'm now able to drive myself there as it's only a ten minute drive. They have a lending library of cancer books and videos and also offer Tai-Chi classes and Reiki, a kind of hands-free energy healing.

A beautiful weekend for camping

Two weekends ago the weather forcasters were predicting a hot weekend for Friday through Monday (in April!). It's early in the year for camping but we decided to go for it. It was a long hard winter for us and my inability to go anywhere had kept us cooped up. We had to cancel our March camping trip to Florida because of my chemo. We had been looking forward to our first camping trip for months. As the camper had been winterized and everything taken out, Barry had to spend some time getting everything packed inside again. I was too fatigued to help and could contribute only my knowledge of where things are normally stored.

We went to Allegany State Park in New York State. It's one of our favourites and under a two hour drive away, in the hills south of Buffalo. We usually go in the autumn when it is absolutely stunning with all the trees turning colour. We got a campsite right beside a little stream and under the (leafless) trees. There were very few other campers there even though the weather was in the high 70's. We walked around the hilly campground every day and even went for a little walk along the streambed. We sat in our chairs beside the firepit listening to the birds and watching the stream burble its way over the rocks down below.




I had been nervous about going away with my level of fatigue but everything worked out well. Barry did all of the cooking of course and we have a camp chair that is like a recliner for me to rest in. We had the camper for me to lie down in when I got really tired.

All in all it was a terrific break and well worth doing. Good memories to keep me going through the rainy days.

In Remission!

Since my chemo is now over, and I've had a CT Scan, my next appointment at Roswell Park was for last Wednesday afternoon. We met with the Doctor's PA, Diane. She told us that the results of the CT scan were negative, that is, no enlarged lymph nodes detected. This and my blood tests mean that I am officially in remission now.

I go back to Roswell Park for a blood check every month for three months, then every three months for a while. I'll have another CT Scan in September.

I'm still very tired and finding my days long. I try to walk every day but we have had some days with nothing but rain. Nevertheless, on the days when I do walk I am going between 1-1.5 km. Unfortunately I pay a price for that and have to spend more time resting afterwards.

Still, a remission is good news and worth celebrating.

I still have my hair, but...

...the curls are missing. It still has a few waves, but it won't curl. I first noticed my straighter hair two months ago, but put it down to the fact that this winter is so dry and my hair does require some humidity to curl. I wasn't feeling well enough to fuss with it, and spending so much time in bed means that it doesn't always look its best anyway.

But now I'm sure. My hairdresser is leaving it a little longer because she says it won't flatten out in bed so much, so it should be curlier than usual. But after my last haircut, there is definitly no curl left. It started to rain during our walk today, and it should have had my hair turning frizzy.

A friend mentioned someone she knew whose brown straight hair fell out during chemo and it grew back in black and curly. Later it grew back as it had been before. So I guess I just have to wait until all of the chemo is out of my system and hope my hair grows back with its usual curls.

Third CT scan

I had my third CT scan on Wednesday. This was my first time back at Roswell in two weeks. I had drunk the Barium Sulphate smoothie and was all prepped for the scan, IV line inserted as well, when the nurse asked if I had any questions. I mentioned the reaction I had last time, immediately after my January scan, when my fingers turned red and began to itch. It had been a short half-hour reaction and I had forgotten to mention it to my doctor.

The nurse said I'd had an allergic reaction to the CT scan iodine dye, and that a second reaction could be much worse. I would not be able to go ahead with the CT scan. I would have to be rescheduled for a day when I could be given meds for the reaction, one 12 hours ahead of the scan and one 2 hours ahead of the scan. The IV line was taken out.

In the end the radiologist agreed that I could have the CT scan without the iodine dye, as the GI tract would still show because I had drunk the Barium Sulphate. Now I have to wait and see if my oncologist wants me to have another scan with the iodine dye and the preparatory medicines so the lymph nodes will show. I learned a lesson from this: tell the doctor about all reactions. Oh well.

More walking

Over the long Easter weekend we went to the Dufferin Islands nature preserve every day. It was sunny but quite cold for the time of year. It's close to the river and that means that the ice still in the river keeps areas nearby colder.
There is very little sign of spring yet but the forsythia are just showing a few green buds.

I finally found my pedometer at home and measured the walks as being around 1km to do a circuit, about 15-20 minutes for me. We saw lots of families with bread to feed the ducks and geese. I found the walking to be easy and it gives me hope that I will recover soon from the fatigue.

On Sunday we took the campervan and stopped at Chippawa Park to have a picnic lunch, but it was too cold to sit outdoors so we ate in the van, with the heater on! Still, there were plenty of family groups all bundled up having their picnic lunch outdoors at the picnic tables. A couple parked beside us started out at a picnic table but soon retreated to their car to eat. I guess everybody is anxious for spring to arrive.

No hospital visit this week

This was my first week in a long time when I had no visits to Roswell Park. I had gotten used to the weekly visits, whether for chemo or for lab checks, and it seemed strange to not go. I did have a hair appointment and a massage, so that made up for it a bit.

I figure that this month I am hitting the lowest of the low, being at the end of my chemo with all of its cumulative effects. Barry likens it to the stock market, which hit such lows recently but is now slowly starting to recover. The stock market crash started about the same time as my cancer story, too, last September. Just like the Dow Jones Index, I have up days and down days, hopefully more up days than down days in the weeks to come.

Today we walked to the mailbox to get the mail, and I managed to walk past 3 more driveways down the road before we turned around to come back. This might not seem like much of an achievement, but for me it was a milestone, as every other trip to the mailbox had me pushing myself just to get there and back.

If all goes well, I will be able to do more and more each day from now on as I struggle to recover from all of the chemo. I'm planning to find my pedometer and using it to track my progress in walking: 4 driveways next time.

Cycle six, day 9: Neulasta

On Tuesday I had my monthly shot of Neulasta to help my white blood cells grow. It was the most efficient visit we've ever had at Roswell. We waited only a minute or two for the appointment, and Barry barely had his laptop open before the nurse called me. A few minutes for the shot and we were out of there. I have some hip and thigh pain today but it is not too bad. (later note: the hip and thigh pain lasted for 9 days, and was especially bad in the evenings.)

For the first time I will have a week off, as there are no visits to Roswell scheduled for next week. I won't know what to do with myself on Tuesday!