Things are finally slowing down!

There isn’t much going on for me these days which is a relief after the ordeal of the last 8 months! I go every three weeks to the Nipawin hospital for my Herceptin injection – so far I’ve had 3 of them here and they are going okay. I am usually tired that day and the next so I just come home and take it easy. Other than that it is business as usual. I even went into work for 2 days and helped my coworker bake for the snack program but then I had to go home and have a nap. I still do need that ½ to 1 hour nap a lot of the time. I am going to the gym usually 3 or 4 times a week. Now that the radiation burns are healed the skin is very tight so I lost some of my range of motion again. I am working really hard at getting it back but I have a ways to go. I'm hoping to be back to normal when I see the plastic surgeon but so far there has been no word from him anyway. My fingernails are so close to being back to normal again. The fingertips - especially on my thumbs are still a little sensitive and my tongue still feels a bit strange. I think about 1 more week and I will be able to have a manicure! However my hair is growing sooo slow. It will be at least another month and maybe two before there is enough there to do anything with.

Good bye Dr. A.

I went to Saskatoon yesterday for what was to be my last appointment with Dr. A before he moves to Arkansas - where the winters are warmer ;o( Unfortunately he was sick so I had to see another doctor. This other doctor was okay but he didn’t take as much time to answer my questions and I felt kind of rushed to ask everything. (Dr A is going to be a tough act to follow and I am going to miss him!) He did recommend that I get the H1N1 vaccine and that the risks from getting the virus outweigh any risks from the vaccine. I don’t have to go back to see (whoever I get now) for 9 weeks. So far my heart scans have all been good but I will get another one in Dec. I got another 6 month supply of Tamoxifen which they give me free of charge.

I asked him if the tingly tongue is from the Tamoxifen or the Herceptin. He said neither. It is still from the Taxotere. So after 4 months the Taxotere is still rearing it's ugly head!

I noticed the other day that my toe nails are also starting to come off. (which is also a carry over from the Taxotere) I am hoping that it will be more like my ring and pinky fingers were. Since you don’t use them much, they grew out enough that I could just peel the old one off and it didn’t hurt at all!

My doctor had called on Friday but for some reason the receptionist gave him Murray’s cell phone number which was turned off all week end. I did get to talk to him on that Monday and he told me to try a number of things like calamine lotion, aloe vera cream or I could use Emla cream. Emla is the anesthetic lotion I put on my port before I get chemo so it doesn’t hurt when they punch the needle into it. I thought that was a great idea so I smeared that on as soon as I was done on the phone. Holy mother of god - it stung so much for about 5 minutes until the anesthetic kicked in and it didn’t give relief for very long after that. The next day the doctor’s office called since I was on a waiting list to get an appointment for my annual complete check up and they had a cancellation for that afternoon. I told him that the Emla cream was not a good idea! When he saw it he told me to keep it dry by putting powder on it. I used cornstarch and that is what finally gave me some relief. It cut down on the friction of my arm rubbing against it. After 2 days it started getting itchy so I knew I was on the home stretch. It was extremely itchy for about 3 days and I thought I would go mad. Finally after 11 days I was back to normal. I could wear regular clothes and resume day to day activities.

I have joined the gym and I discovered that am really out of shape from this whole ordeal (what a surprise!). My fingernails are just over halfway there. The top half is still quite brittle and not good for much but I can scratch my itches again. I think I should have them back to normal in 2 or 3 months. My hair is slowly coming in. It is about ½ inch long and not in the color I ordered!! I’m told that sometimes it does change after a few months so there is some hope but I don’t think I will hold my breath. Also there doesn’t seem to be any curl to it yet.

I had my first injection of Herceptin at the Nipawin hospital last week. It only takes half an hour for the infusion but it takes the pharmacy a long time to get it ready. I was there for over 2 hours so it was nice to only have to drive a few blocks home instead of 3 hours. I could relax and take it easy. I still have to go into Saskatoon the week before my next one for blood work and to see the oncologist.

Radiation Burn

By Friday I was in complete agony with this under arm burn. I waited by the phone all day for my doctor to return my call and he never did. Grrr. I got up on Saturday and went to see the doctor on call at the hospital. The nurse put some Flamazine (which they keep in the fridge) on it and some gauze. It was so cold but instant relief. The doctor then prescribed some Flamazine for me to put on it and also told me to take my Tylenol 3’s or to take 1 full dose of Advil and 1 full dose of Tylenol together. The Flamazine feels oh so good but you can only use it once per day but the Advil/Tylenol mix is a pretty good pain reliever. I look forward to the day when I can do my own thing and not worry about what hurts….

On Wednesday I Rang the Bell

At the Saskatoon Cancer Clinic in the radiation department there is a bell on the wall just outside of the waiting room. It is called Taya’s Bell and on it is written:

Ring this bell to honor your last treatment.
Let the sound fill your heart to signify the bravery of your life’s journey.
Taya Rae Sawka
Age 5
Medulloblastoma

Well radiation wasn’t exactly a walk in the park either! I mean it didn’t hurt to get it but the last 3 days were a killer. I have a really bad radiation burn under my arm and the doctor told me on Wednesday that it will peak in about 4 or 5 days. So it is going to get worse before it gets better. I have saline compresses to put on it and I am supposed to leave it open to the air as much as I can. Also I am not supposed to do any vacuuming, carrying groceries or anything that will create friction under my arm. (Aww Darn!) It feels like it is on fire already so I can’t imagine what it will be like on Saturday!

As much as I enjoyed being in the city the last 5 weeks, I am really happy to be home. I will get my next dose of Herceptin at the Nipawin Hospital so I won’t be going into Saskatoon for at least 6 weeks.

Today a very nice friend sent a cleaning lady to my house. It was really nice to have that done since I haven't been here much during the last 5 weeks and before that I was too sick to do much more than the basic cleaning. That was the best present ever - Thank you!

I was very sad on Tuesday when my medical oncologist (Dr A) told me that he is leaving for the US in the next few months. I will miss him.

Halfway There

I am halfway done the radiation treatments. They have been scheduling me late on Monday and early on Friday so that I can spend more time at home. By 8:30 this morning I was all done my treatment and was on the road. Today they did the verification again to make sure that everything is still lined up right. So far the only side effect I have is the tight skin and muscle. When I saw the doctor on Wednesday he said that should go away gradually after I was all done the treatment. I do my stretching exercises faithfully every day and it just seemed like I regressed overnight.

On Wednesday I had my third Herceptin injection. It does make me a little tired – I had to have a nap that day and again today when I got home. It also gives me a sore mouth but nothing like I had with the chemo drugs. This is just a bit like when you burn your tongue – it feels a little uncomfortable but I can still eat everything.

The Tamoxifen is an anti estrogen and it is giving me hot flashes really bad! I spend half the night sweating and the other half shivering. This disrupted sleep may also be why I am so tired in the daytime!

So far 5 of my fingernails have come off completely. The new nails are grown up about ¾ of the way but they are not coming in very nice. The other ¼ starts out as a very thin layer of nail but it becomes brittle and breaks off in little chunks. They are quite tender and catch on everything. Last week I had the bright idea to try gel nails. My dear niece put them on for me. Even though I still can’t use them for a lot of things, it is such a relief to have the covering on them. It makes the simplest things like washing and drying my hands so much easier. For some reason my right thumb nail won’t stay on. It came off the first day and she kindly re-did that one. Well the second time it came off even faster. (It isn’t completely off, just cracked and I have to keep a Band-Aid on it.) Hopefully when I get to see her next week my nail will have grown that much longer and it will have enough to hold the gel in place. My hair is starting to fill in but it seems to be taking forever to grow!

I am really happy to be sleeping in my own bed for the next 4 nights!

Radiation

Well first of all the biopsy came back clean so I was able to start the radiation this week. That was a real relief for me! I had to go in on Tuesday for my verification. This is where they check the positions to make sure that everything is lined up and they go through the motions of what will happen without using the radiation beams. On Wednesday, Thursday and Friday I had my first treatments. All the staff in there are amazing and it is a piece of cake really. You just lay there with your arms above your head holding onto some bars and the machines are rotating and whirring all around you. It takes about 10 minutes and you feel nothing. The hardest part is lying completely still on that hard surface. My back is really sore these days and I am not sure if I can take my anti inflammatory pills for that. I guess I will have to ask the doctor or pharmacy if I think of it next time I’m there.

Now I just have 22 more treatments to go. I should be done on September 23. This is probably the worst time for me to be away as everything in my garden is really producing right now.

I also had another bone scan on Tuesday. I don’t have the results yet but the technician did show me the pictures and everything looked the same as the first ones so I think that is also fine.

Vince had his lasik eye surgery on Wednesday and everything seems to be fine there as well. His vision improves every day.