Yippyyippyyippy Yahoo!!!

I am done! I had my last Herceptin treatment today and it feels great! I have a friend that works at the hospital and she has been bringing me coffee the last few times I've had treatments. Today she also brought some very decadent chocolate cheesecake to celebrate my last treatment. It was so good! I got a hug from the nurse who hooked me up too :)

I really didn't have side effects from the Herceptin except some weight gain. I gained about a pound or two every 3 weeks and 4 pounds this last time but then I haven't been to the gym much in the last 3 weeks either. There has just been too much going on this summer and I am enjoying every minute of it as I have all of last summer to make up for.

Next week I have an appointment for my yearly mammogram and I will also see the oncologist for my 3 month follow up. I will be able to ask him to set up an appointment for me to get rid of this port.

I saw the plastic surgeon in June and it turns out that he is the wrong one for me. He only does implants and he thinks I will be happier if they use my own tissue for reconstruction. I don't have all the muscles needed to hold the implants in place any more. So I had to wait for him to write Dr. H and then for Dr. H to refer me to someone else and then for that doctor to schedule me in for an appointment. Now I am seeing Dr. C for a consultation on October 20. Waiting, waiting all this waiting!

New Oncologist and Plastic Surgeon

I met my new oncologist last Thursday. He had a resident with him who came in first to examine me and he asked me a few questions and answered mine. Then he came back with Dr S. He didn't do much since the other guy did everything already anyway. Everything checks out, my bloodwork and last heart scan were all good. He wrote me another prescription for the Tamoxifen and he did tell me that my last Herceptin treatment will be on July 29. I thought it was going to be the end of June but I guess one more month isn't that big of difference. I will only see him one more time about a week before my last treatment and then he will sign me off to my family physician.

Way back in Sept I went to see Dr H to be referred to the plastic surgeon (I chose Dr. Z) for reconstruction. I still don't know what I will do or even if I will do anything. I just want to talk to him and find out what my options are. He sent another letter in February for me and I still hadn't heard anything so I decided to call and find out where my name was on their waiting list. I am sure glad I called as they said they never heard of me and they had no letters from Dr. H!! WTH??? So I called his office and the secretary said yes both letters went and she printed them off and she was going to fax them to Dr. Z. The long and short of it is that they somehow misplaced not one but TWO letters from the same patient and now I have an appointment for June. Hopefully this will give me some leverage to get any surgery dates pushed ahead for me!

One In Eight

One in eight North American women will develop breast cancer at some point in their lives which is the highest rate of breast cancer in the world. Think of your friends and acquaintances - one in eight. Think of your family members, grandmothers, mothers, sisters, nieces, aunts, cousins, one in eight!

Now that I am nearing the end of my treatment and at least past the really icky stuff, I can look back and I know that if I had it to over again, I would. If I had to I wouldn't have to think twice. If you are reading this and just starting on your "journey" through this dreadful disease, I would tell you that you should do whatever it takes. I would say that as awful as chemo and radiation are - it is doable. The reality is that you can fight and win, you may fight and lose but you will not win if you don't fight.

Since my last update, I have seen a visiting oncologist who just checked me over and okayed orders for me to continue with the herceptin. I think I have about 6 or 7 to go and then I am done with that. YAY! This oncologist agreed that the surgeon should have a look at my fluid build up on the mastectomy site. In between times I saw my family doctor and he couldn't think of a reason that the surgeon needed to see it. He was willing to drain it for me right there but as far as he could see there wasn't much to drain. I decided to wait as I was waiting for Dr H to return my call. I ended up getting an appointment notice in the mail instead of a phone call. My doctor had also booked a mammogram for me so I arranged the appointments to be on the same day. Dr H did drain the fluid but it turns out that Dr S was right - I didn't need to see the surgeon at all.

I told him I still haven't heard from Dr Z (the plastic surgeon) but he said to be patient, you know that these things always take a lot of time. Yes this certainly is a waiting game. He said that this would give me lots of time to consider my options. I said the problem with that is that I don't really know what my options are and I just wanted a consult so I can know what I should be thinking about! He thought that sounded reasonable so said he would write another letter for me. Here's hoping I hear something soon.

I also asked him if I needed to stay out of hot tubs since having my lymph nodes removed. He had never heard of that! WTH? Everything I've read on the internet and the literature from the cancer centre say you should avoid them. I wonder where that comes from then since now that is two of my team telling me otherwise. I will be asking my medical oncologist next visit. I think a new one has been hired and I should probably get to see him in March or April.

That same day I ended up just having an ultrasound as I wasn't due for a mammogram for another 6 months. They wanted to take another look at the cysts they saw in August as apparently they were abnormal looking. Everything checked out fine. Whew! It never seems to fail that I get the next appointment in the mail the same day I get home from Saskatoon. My next visit will be March 1 for another echocardiogram. (didn't I just have one???) I guess the last one was December 14 and I have them every 3 months. At least I know that they are looking after me.

Update

My 9 week check up was supposed to be around December 30 but they have yet to replace Dr A so there wasn’t anyone for me to see. When I had my Herceptin treatment on December 17 the nurse told me that she would tentatively book my next appointment in 3 weeks but that as yet there were no orders for me. I went home and called my oncology nurse at the cancer centre and that is when she told me there was no one for me to see but she would talk to one of the oncologists and get them to send in some orders for me. When I had my appointment on Jan 6 again she said there were no orders for next time. This time the clinic did call me to make an appointment for Jan 15 to see an oncologist who is visiting for a month. So I will finally get my blood checked and be able to ask some questions.

I had my echocardiogram (heart scan) on December 14 and my heart is still good. It is at 65% which freaked me out at first but the nurse said they don’t like it to drop below 50 and normal is 55-75%. I don’t know what my very first one was before I started the chemo but when I was done, my heart scan in July showed 64% - I’m up one from then!

I saw the radiation oncologist on January 7 for my 3 month follow up. He said that I am doing great and he will now fade into the background and I won’t have to see him again but I can call him if I need anything. He said I should continue the stretching and my range of motion will improve. He said I can still be in the sun but to wear a light cotton covering and use sunscreen where I had the radiation. Apparently not everyone burns easily after – everyone is different. Now that it is healed I don’t have to keep smearing lotion on it. When I asked him about hot tubs and saunas he told me that was an old wives tale and that I should be able to go into them. I’m really not sure about that as everything I have read anywhere says that it can cause lymph edema. He said your body compensates and creates its own channels of drainage. I will definitely be asking every doctor I see after this what their opinion is on that one. He also said that since the cabins are pressurized on airplanes now, I usually won’t have to wear the compression sleeve to fly.

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.