Nearing the Finish Line :)

Okay where to start? In February 2012 I was ready to release the information that I had tested positive for the BRCA 2 gene mutation.  That did the trick because a month later I finally received a call from Winnipeg that they I could come for a consult with Dr B in May.  However they said if I was considering a hysterectomy I needed to do that first.  With the gene mutation I have an increased risk of developing ovarian cancer and being on Tamoxifen** increases the uterine cancer risk.  I wasn't sure if I was prepared to go that extreme but I really wanted to get a professional opinion.  I tried in Feb, March, April, May and finally got an appointment with my family doctor in June to talk to him about it. Since I didn't have that kind of time, I called Dr H in April and tried to see him but his secretary wouldn't let me!! She did at least have him call me the next day and he said yes he thought it was a good idea for me to consider this and referred me to a gynecologist - Dr E.  She was amazing and worked really hard to fit me in quickly first for the consult and then the surgery - we decided just an oophorectomy (ovaries and tubes) was the best option for me.  I had the surgery in June and then got to have my consult in Winnipeg in August.

For the consult they showed us photos of exactly what they do in surgery.  They would be doing a right prophylactic mastectomy, bilateral reconstruction with right DIEP and left SIEA free flaps.  You can google that if you like rather than me trying to explain it. Dr B told me their goal is to make me look good in clothes - perfect, that's all I want.  I was thinking this was going to be happening soon but no they said it could still take up to a year for me to get the surgery.  They are still overwhelmed with active cancer surgeries and they fit people like me in when they can.  So back home I go and wait and wait and wait.

The call finally came in late May that I had a surgery date Monday June 3, 2013. (In October it will be 4 years since I was referred to the first plastic surgeon - that is a long wait!)  I had to be in Winnipeg on the Friday before for a appointment with the anesthetist.  When I told him I was a little nervous as this was the biggest surgery I've ever had he said this wasn't considered a big surgery!  Hindsight tells me I should have said "You try it!" The nice thing about the Health Sciences Centre is that there is a hostel (Lennox Bell Lodge) attached to it (along with a host of other services) with a series of underground tunnels.  We stayed there the Thursday night and then Murray stayed there while I was in hospital and we had to stay for a week after I was released.  Since it's only about 2 1/2 hours drive, we went to Kenora, Ont to visit my aunt for the week end. I hadn't seen her in about 7 years and we had such a nice visit with her.

On the day of surgery I had to be at the hospital at 5:30 a.m.  After admitting they got me into a hospital gown and started the IV.  A resident came in a drew all over me with black permanent marker (just like they do on Nip Tuck!)  The doctor came in after that and did some revisions on the drawing.  By 7:30 sharp I was on the operating table and it was lights out. The resident that called Murray after said it took 7 hours and it was textbook.

The first thing I remember is that whoever moved me and my bed into my room was not as good of driver as the ones who have done it for me in Saskatoon.  Man they were swaying all over the place and banging into everything!  I was nauseous from it!  They checked me with a little hand held ultrasound machine every hour for the first 24 hours to make sure there was proper blood flow in the tissue.  I had to stay in bed for that first 24 hours.  On day two they got me up into a chair for about 20 minutes and then day 3 they got me up to the bathroom.  After that I finally got rid of the catheter.  I didn't realize how completely helpless I would be for the first 2 weeks.  I couldn't get out of bed without help or bend over to pick anything up off the floor.  I could barely walk as I had to do the grandma walk and stay hunched over.  This put a lot of strain on my lower back so that is what hurt the most.  I could feed myself but even just cutting things up on my plate took effort.  I also didn't know that I would have to sleep sitting up propped up with pillows for 4 weeks.  I like to sleep all over the place, on my back, sides, front so sleeping isn't enjoyable right now.  It would have been nice to have a little more realistic warning of what to expect for recovery.  I could have psyched myself up for it.

The food in the hospital was the worst I have ever had.  Everything was processed and microwaved.  I really don't know how anyone can heal eating that!  I also had to give up all caffeine for 3 weeks after surgery including chocolate.  That was hard for me.

We were  really fortunate to get a wheelchair accessible room at the lodge.  Simply because there was a lot more room in there and the best part was the big shower with a chair that I could sit on. No way could I have stood up long enough to shower.

The drive home was long as Winnipeg is about 10 hours from here.  They said we should stop to let me walk around every hour so that made it even longer.  This was to prevent blood clots in my legs.  One good thing is that I now have a plastic surgeon who will look do all my after care in Saskatoon - Dr C.  I saw her two weeks after surgery.  Apparently there are revisions that I can have done if I choose.  I thought this was a one time surgery but she told me that we won't know exactly what I have until the swelling goes down and things settle into place which takes about 3 months.  The side they did the mastectomy and immediate reconstruction on is way more swollen and so I feel like Marilyn Monroe on that side and Twiggy on the other :(  Anyway she said she can make me look really good and all the revisions would be day surgery.  I will see how I feel when the time comes.

I am at 3 weeks post surgery and things have improved a lot.  Most of the scabs have fallen off.  I will have to wear a compression binder around my middle for 3 more weeks and a special bra day and night for 3 months.  I have had a few spots of infection starting but I have been able to fix that up with tea tree essential oil. 

I am now waiting for the day that I can get out there and work in my garden.

**I decided to go off the Tamoxifen in October 2012.  I was just tired of the side effects like Charlie horses all over my body not just the legs), hot flashes, weight gain, thin hair and I also suspected it was causing my migraines.

Life goes on

I'm afraid I have been neglecting my blog. I didn't really mean to but I haven't had a whole lot to blog about. I am still waiting to hear from the plastic surgeon in Winnipeg. Ridiculous I know but such is the way of our healthcare system and doctor shortage. They tell me that they are overwhelmed with active cancer surgeries and of course those take precedence over reconstruction. In the mean time I am keeping busy enjoying life - and that's a good thing!

Still in Limbo

Well so far I have seen two plastic surgeons and I still don't know what or when this is going to happen. The first one was Dr. Z. and he told me that he only does implants and that he doesn't recommend that for me. I don't have all the muscle structure to hold them in place because of the mastectomy so the one could end up on my shoulder or under my arm. Hmmm don't think I want them there.... That was in June. Then I had to wait for him to send his findings to Dr. H. and then for Dr. H. to refer me to someone else which turned out to be Dr. C. I finally got to see him last week. He said that since I need bilateral reconstruction and if I want to use the tummy tissue, I need to go to Winnipeg. Apparently this surgery takes 2 plastic surgeons 6 hours and while they could do it in Saskatoon, they don't really have the man power. He would do it if it was just one side or if I opted to use the skin from my back and then spacers. A spacer is an implant that Dr. Z already said I shouldn't use and this guy agreed with that so I am a little confused about that. So now I wait some more until Dr B in Winnipeg sends me a letter with an appointment.

I did get my port taken out last week when I was in Saskatoon. Just 2 more sleeps and I get the stitches out. I can't wait!

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.