The Waiting Game

Jessica did make it home from South Korea and she is here for another couple of weeks. We had a nice quiet Christmas with just the 5 of us. It was nice to be all together again.

I’ve been doing really well. I’ve had no real pain after the surgery and everything seems to be healing nicely. I am starting to get phantom pain now though. It is like an itch you can’t scratch or a sharp pain in tissue that is no longer there. I guess it would be much like someone having an itchy foot after their leg has been amputated. It is unpleasant but it doesn’t happen all the time so it isn’t too problematic yet. I went to physio last week where they mostly just checked the exercises I was doing and made sure I was doing them right. I go back in two weeks to show my progress. It is coming along and I can go a little farther each day. I saw Dr. S yesterday and everything is good so far. I have a seroma (fluid pocket) at the surgery site. He said my body will probably absorb it but if it gets worse he may have to aspirate it. (ugh) It doesn’t hurt but is just rather uncomfortable. He also went over my first pathology report with me and explained a few things. I thought that since all of the lymph nodes weren’t involved that I didn’t really have to worry about it spreading but apparently even if only one has cancer it can spread it to other parts. Way to burst my bubble.

I go to see Dr. H on January 12. Hopefully he will have all my pathology reports and liver scan results back by then and I am really hoping for some good news this time. This waiting is the hardest part. I am scheduled for the bone scan on Jan 14. I am trying to change that to the 12th or at least the 13th so I don’t have to stay in the city for 3 days but it isn’t looking good. They just give you an appointment and you just need to be grateful for it and never mind finding a time that is convenient for you.

So now I just wait for the next appointment, wait for results, wait to heal enough to start treatments and wait to see the oncologist. (I have no idea when I will see him or her). I have been playing the waiting game since September and it is far from over.

Mastectomy

Going for the antibiotics every 8 hours was a real PITA and by Monday I was a mess. I was worried about not getting the surgery and then worried about getting it. I needed a new IV line since the first vein went. I had to have my IV done at 8 and then come back at 11 to see the on call doctor. He left without seeing me because he didn’t want to be the one to make the decision about my surgery so at noon they set things up for me to see Dr H in Saskatoon at 4 o’clock. That didn’t leave us much time to have something to eat, pack up and drive into Saskatoon but we did make it on time. He didn’t think I had an infection at all. He said I probably had a second bleed (hence the bruising and swelling) which raised my white cell count and that in turn raised my temperature. He asked if I wanted to wait to have the surgery and I replied with an emphatic No!

Originally I was diagnosed with invasive ductal carcinoma (meaning the cancer has gone beyond the ducts). The pathology report showed that I also have lobular carcinoma in-situ (in-situ means it is non invasive and hasn’t spread beyond the lobules). With lobular carcinoma I have an increased risk of developing it on the other side so when I decide to have reconstructive surgery they will remove the other breast and reconstruct both sides at the same time. I asked him to take them both right now but he said he said no. He said this is a rather aggressive cancer and he didn’t want to risk me developing complications on the other side that might delay my treatments. The chemo will cover any risk of me developing it in the other side for now. The report also showed that 9 out of 14 lymph nodes had cancer.

I had a much nicer anesthetist this time. I told him not to be offended if I swear at him when he is looking for a new vein since I’ve had so many of those in the last week and my arm is sore up to my elbow. He tried one place and that didn’t work so he said we have to go to plan B and put me to sleep like they do for the little kids. He explained that this is where he sits me on his knee and tells me a bedtime story. LOL but since he can’t sit me on his knee though he will use the mask to put me out (and then he could find a vein when I was sleeping) and so he put that mask on my face and he said it instructs him to say Once upon a time there were three bears…. He stopped there but it took a long time for that stuff to put me out. I tried hard to relax and just breathe deep but I was starting to feel very claustrophobic and panicky.

The actual surgery went well. I woke up quicker this time but it is much harder to bounce back. It takes a lot of energy just to stay awake but at least so far I am not feeling too much pain (even without the drugs!) They took both my drain tubes out in the hospital so that was great! They wanted to send me home after one night but I dug my heels in and got to stay another night. It set me back a bit with arm mobility but this isn't as bad as the lymph node surgery. My snow angel is back to 1/2 a wing.

I want to thank everyone again for your kind thoughts, letters, cards, emails and gifts. Also the staff at Central Park School who sent us a care package of casseroles, cakes and cookies. It is an honor and a privilege to work with such a kind and caring staff and I miss you all very much. Your generosity is overwhelming!

Also if for some reason you are unable to post comments on this forum, I welcome all phone calls and emails!

2nd Surgery

In spite of all the drama last week the surgery went as planned on Tuesday. I am very tired and weak but I will try to fill in the details in the next day or two.

IV antibiotics

I still had a fever this afternoon and the swelling was getting bigger so I went in for my IV antibiotics. Fortunately the same doctor was on that had been there the other night so he got me started right away. I thought they would just give me a big dose and that would be it but I have to go in every 8 hours for more. So I have to go back at midnight and then again at 8 tomorrow morning. It really isn't fun at all since I have this IV line in my right hand and I still can't do much with my left. Right now the left has to do more though cause it hurts less. I can hardly handle a fork with the right. I hope this is worth it...

On the plus side, Jessica's plane is enroute from Minneapolis to Saskatoon so as long as she is on it she should be arriving soon. I'm starting to get really excited!

New development...

When I left the hospital, one of the things they told me to watch for was fever. If I get a fever I am to go have it checked right away. Yesterday I had a temperature of 38C so into emergency I went expecting a long, long wait. They must have my name flagged or something because I ended up with a different form than usual and they whisked me out of that germ infested waiting room before I had a chance to grab a magazine or sit down. I hadn’t even told anyone why I was there yet and the first thing they did was to take my temperature and blood pressure and put me in a room. The nurse asked all the questions and examined me and then I got to lay on the cot with a blanket for my wait. It was more than an hour wait but I managed to sleep for a lot of it.

The doctor I saw was very thorough but he couldn’t really find anything wrong. I do still have a lot of bruising that had initially cleared up and then one day appeared out of no where. That side does feel a little warmer to the touch so it is possible that there is an infection brewing in there. He didn’t want to give me something I don’t need or that will interfere with my surgery but he was concerned about missing something that might prevent me from having the surgery on Tues. He ended up calling my surgeon at St. Paul’s (but he actually spoke to one of his partners) who said to go ahead and give me some antibiotics and that they will give me more in the operating room and I will still get to have my surgery.

I still had to go back today and get some blood work and a chest x-ray and see the doctor on call. Everything came back good (in fact the rest of me is really healthy believe it or not!!!) except my white cell count is up so I do have some infection. She said that it is definitely infection and not just a bruise. I have to stay home and rest so that means no going to Saskatoon tomorrow to shop or to go to the airport to get Jess. Bummer but I will follow the doctors orders. If I am not getting better by tomorrow I have to go back in and get some IV antibiotics.

It's a date!

The surgery is set for Tues Dec 16 exactly 4 weeks after the first one. UGH

Some Perspective

Okay he isn't doing a mastectomy for no good reason. There are other issues like I have a huge cyst in there that I have had aspirated and some lobular carcinoma (pre cancer). Dr H is a very good surgeon and I trust his judgement implicitly. He just thinks that at this point it is best to remove it all to be on the safe side.

It was sounding like good news but it went bad real fast!

I am not sure that I understand this myself so explaining it is going to be difficult. When I had my original biopsy there was cancer in the breast. When I had the surgery and Dr H removed the lump he also removed the lymph nodes because they looked abnormal. He was right about that because they were positive for cancer. Now the pathology report for the tumor came back and said that there was no cancer in the tumor or the surrounding tissue that he removed. That was the part that sounded like good news! Where did it go? He is totally perplexed and has never seen this before. We know that it was there when they did the biopsy and that it did go into the lymph nodes. He said it is possible that they got it all with the biopsy but he thinks that is very unlikely. It is possible that it is somewhere else in the breast. We have to find the primary source of the cancer and in order to do that I need to have a complete mastectomy. (This is where it went south in a hurry.) So now in the midst of getting ready for Christmas, in the midst of Jessica’s visit from South Korea I am going to be having another surgery. The possible dates are Dec 9 or 10 (not likely cause that is tomorrow!) or Dec 16 or 17. He asked if I would be comfortable having one of his colleagues do it since he is leaving on an airplane on the 18th and I said I would prefer that he do it. He will rearrange his schedule for me so I am thinking the 16th or 17th.

He also said that I am at minimum a stage 2 cancer (whatever that means) but he thinks this is a fairly aggressive sort and we can’t really stage it properly or decide on the course of treatment until I have the bone and liver scan and the mastectomy.

2 Week Post Surgery Check Up

I have been recovering from the surgery quite well. I have a small amount of swelling which Dr H thinks is mostly from the surgery itself and will probably clear up. My arm measurement is only 2 cm bigger than it was before but it is incredibly painful – I can’t imagine what twice the size feels like. I thought this was from getting the drain tube out too early but he said he only likes to keep it in for 5 days maximum because the chance of infection increases when it is in longer. (I actually had it in for 8 days).

He didn’t have any of the reports back yet because the pathology lab is really backed up. He only had a verbal report that said my lymph nodes were all positive which wasn’t really a surprise but denial is a wonderful thing! Now we are still waiting to see if the margins are clear. If I don't have clear margins, I will have more surgery. He is sending me for a liver ultrasound to make sure it hasn’t spread anywhere else. Scary huh? (Joan assured me that this is routine procedure so I am trying really hard not to worry too much about it yet) That will be on Dec 22. Since the nodes were positive I will have radiation in 2 sites – where the tumor was and under my arm in addition to the chemo. The under the arm one will likely cause lymphedema so he sent me to Pink Tree to get a compression sleeve for my arm. He said it would give me some relief for the swelling I have now as well and that I should take Advil to help with the inflammation. So he didn’t have much news for me today but what he did have wasn’t good.

I have been doing my pathetic little exercises every day but I'm not really very good at them yet. My bicep is really tight and sore so I can't raise my arm very high and when I make my snow angel on the bed I can't quite get that arm to shoulder level (straight out). I thought this was from the surgery but I think it is from the swelling.