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.

YAY The Drain Is Gone!

I got the drain out today and it is so nice to have it gone! They pulled 8 inches of tube out of me so you can all just imagine for a minute what that felt like! (Here’s a clue: Ouch!!!) I guess the bandages did come off when they were supposed to and everything is healing as it should. I think the one incision in particular looks nasty but the doctor said it looks good(What do I know?), it's just a bit more swollen but it will improve a lot. The stitches are the dissolving kind so that was another bonus.

Overall I’m doing pretty well. I get more use of my arm back with each day. I’m not nearly ‘as good as new’ like the doctor promised I would be after 1 week but its coming. I’m going to try a reflexology treatment tomorrow so hopefully that will help some with the pain.

I’ve been passing the time playing spider solitaire, reading and watching videos. I try to get out for a walk every day as the temperature has been hovering around 0 give or take a few degrees. I’ve had quite a few visitors too which is a really nice way to pass some time.

We have seen so much kindness from the people we know here. The past two days in a row we’ve had people show up at the door with supper around 4:30 so Murray and Vince really appreciated not having to cook. Several people have brought baking and other treats as well. We are truly blessed to have such great friends and neighbors!

I have figured out who everyone is that has posted comments except for Debbie. Debbie if you come back can you give me an idea of which Debbie you are and where I know you from? :o)

I will see the surgeon Dr. H. on Monday, December 1. Hopefully he will have all the pathology reports back so we will know exactly what we are dealing with and what plan of action to take. Watch for the next update after that.

The Novelty Wears off Really Fast!

Lying around in your pajamas, doing nothing gets old real fast. I’m not sick and I’m not really tired – I just can’t do anything. Who wouldn’t love to have a few days of surfing the net, checking email, watching videos, talking on the phone and eating? Well I’m telling you that it is BORING and I need to find a hobby before I completely lose my mind – maybe I will start on my Christmas cards today.

Yesterday the homecare nurse came to change my bandage on the drain. For some reason she also pulled the clear plastic skin like tape (opsite) off of the incision under my arm. I really don’t think that was ready to come off because that incision is a mess - not all neat like the other one that is still under the tape. Also the all the skin where the tape was is covered in the glue from the tape so I have to keep unsticking my arm from my side which is very unpleasant. I am supposed to be getting my drain out on Monday but Dr. S is away and totally booked on Tuesday as well. I can only get in to see him on Wednesday. I don’t really want to wait that long but after the tape incident I don’t want anyone else to do it either.

I have very little feeling in the back of my arm but my bicep is really tender especially right above the elbow. I keep getting painful twinges on my shoulder, upper arm and at the surgery site but not bad enough that I need to take anything for it. It’s just all part of the healing process I guess.

A word about your comments

I love all the comments! They really lift me up so please keep them coming! One thing though, I know lots of people with the same names so if you don't want to post your last name, try to give me a hint of who you are. Last initial, where you live or some idea of where I know you from. Or if you prefer, you can just email me.

Surgery

We stayed in Saskatoon overnight on Monday because I had to be at City Hospital at 8:30 for what I call my dye job for the sentinal node biopsy. It was PAINFUL! They did 4 injections of dye around the nipple. The first one wasn't bad, the second one a little worse, the third really bad and fourth brought tears to my eyes. Then I had to lay really still while they took xerox images for the next 20 minutes while this dye moved through my lymph system. The good thing was that once injections were done it didn't hurt anymore. Thankfully my cough is pretty much gone!

Then we had to drive over to St. Paul's Hospital. We didn't wait very long when they called me in to get into the hospital gown and fill in more forms. Dr. H. came to talk to me and I told him to take out as much as he needed to rather than have to do another surgery later. We walked to the waiting area and the Anesthesiologist asked me yet more questions. He said I could expect to be hung over after the surgery as if I drank 3 bottles of scotch. I can't imagine drinking even one glass of the stuff but I got the idea anyway. I said you mean to say you are giving me this major hangover and I don't even get to have the good time first? Yup. What a guy!

I had to walk myself into the operating room and jump up on the table myself not like on TV where they do all that for you. The last time I saw the clock it was 11:35 - right on time. There was a flury of activity getting things ready and then it was take 3 deep breaths with this oxygen mask on my face and the next thing I remember was being woken up from a dream with "Bernadette wake up your surgery is over". I got to the room around 3 I think. Murray and Roxanne were there shortly after that. I felt remarkably good except very tired - good drugs I guess. They brought me supper at 5 which was roast pork, mashed potatoes and gravy and mixed veggies, tea and 1/2 apple for dessert. The 3 anti nausea drugs they gave me before surgery must have worked because I ate that with no problem and I didn’t even really have the hangover.

Jim and Joan, Murray and Roxanne visited in the evening till 8. I had a pretty restless night – waking up every hour. Twice I had to refuse the blood thinner shot. You would think they would check the chart and if you have a clotting factor in the OR you probably don’t need blood thinners! Good thing I was with it enough to refuse! I had a really sore throat so they gave me tylenol and said I could have something stronger if I needed it. Later when the good stuff wore off and my incision started hurting they wouldn't give me anything because I just had the tylenol 3 hours ago. Grrrr. The next time they made that promise I was ready for them and I got the good stuff right away! Dr. H. came to see me in the morning and said that the tumor was 2.5 cm and he took all the lymph nodes from under my arm. They were all abnormal looking but we will know for sure what is what in two weeks time when I see him next. So in the end the painful dye job was all for nothing… Later when we wanted to sleep the nurse made my room mate and me get up and walk around the corridors – such a slave driver! Even though the doctor said I could stay another night if I wanted and the admitting nurse said I should stay another night they couldn’t seem to get me out of there fast enough. They need the bed so out you go! It was snowing and I was a little concerned about driving the 3 hours home in that but the nurse just said we could probably get a discounted rate at a hotel! Nice! The trip home was uneventful and it did feel pretty good to sleep in my own cozy bed last night.

Today I feel pretty good but that might have something to do with the narcotics I am taking every 4 hours! My arm is quite numb and I have two incisions that I can see each about 3 inches long and then I have a drain tube but I can’t see where that is going in because of the bandage. I was able to have a shower (I was surprised too but YAY) this morning and I am able to raise my arm up to wash my hair (albeit slowly and very carefully!).

The Homecare nurse was just here. She changed the bandage that is on the drain tube and said everything looks good. Now it is time for lunch and a little nap. Murray is home and is taking good care of me.

Feelin' the Love

Well it seemed like November 18 was never going to get here but it is just 3 days away! I spent the last 6 weeks trying to get my information from the hematologist in Regina to my doctor and surgeon. Everyone was on holidays when I needed them but it seems that everything worked out and they are going to give me the clotting factor (for the Von Willebrand’s disease) in the operating room. That’s one less thing to worry about.

My GP did the pre-op for me on Monday which was mostly just blood pressure and medical history. On Wednesday I went into Saskatoon for my Pre Assessment Clinic. I thought I was going to meet with the surgeon and anesthetist but I didn’t get to see them at all. They did the blood work, chest x-ray, blood pressure, temp, and then I met with a physiotherapist, social worker, home care nurse and finally the RN did pretty much the same thing as I had done on Monday. It just felt like a waste of time but I guess we are all ready to go on Tuesday.

I’ve been sick with the flu for the last 2 weeks and been coughing for the last 10 days. I went to a walk in clinic in Saskatoon to make sure I didn’t have a throat infection since it is just about impossible to see a doctor here. It turned out to be viral but I sure hope this cough is done by Tuesday. It is getting less and less every day.



I have already received so many flowers, gifts, cards, phone calls, email, prayers, encouragement and well wishes. I’m really Feelin’ the Love and it is very humbling. Thank you all so very much!!!

I will try to post about the surgery on Thursday when we get home.

What has happened so far...

It all began on our trip to Germany. We were staying at my friends place in Mainz when I woke up one morning with a dull pain under my arm so I rubbed it and there was a little lump there. Well I've had these before, always got them checked and they are always nothing to worry about. Just probably another hormonal thing so nothing to worry about right? Fast forward a month, we were back home and it was still there. I'm due up for a mammogram so I guess I better get on it. My appointment is scheduled for Sept 5. Five days later the doctor's office called and the doctor wants to see me the next week. Whoa - with our doctor shortage you just don't get appointments that quick around here so I'm thinking this can't be good. The next day they called again. 'We have a cancellation tomorrow can you come in?' . . . Oh oh.



Well, there is something suspicious looking on the ultrasound so I need to go in for a biopsy. That sounds scary so I go on the internet and google this. I need a ultrasound guided core needle biopsy. I have a one in four chance of this being cancer so I liked those odds. My appointment was scheduled for Sept 22. I had to be there at 9:30. We went into Saskatoon the day before and stayed with Jim and Joan.



The biopsy was relatively painless. They gave a local anesthetic which probably hurt more than anything. She made a small incision and took 5 samples from that little hole. It sounded like a big staple gun and she would warn me before each one but it was so loud that I couldn't help but jump every time! Afterwards she showed me the samples. They looked like little white threads about 1/2 inch long floating in a little pill bottle. Hmmm they looked innocent enough! Results in 7-10 days.



Sept 29 I have an appointment scheduled from a month ago for my yearly check up. As soon as he came in the room my doctor said he had the results of the biopsy and unfortunately it is cancer. When I heard the "C" word I think time stopped for a moment. This can't be right but he was so concerned and already set me up with a surgeon so I guess there was no denying it!



On Oct 6 I had my appointment with the surgeon in Saskatoon. He seemed like a pretty good guy. He took lots of time to answer all my questions. He will remove the lump with a pretty wide margin. They will also do a sentinel node biopsy where they inject a dye into the breast early in the morning. Then when they do the surgery they can see which lymph node it drains into first - the sentinel node. They will take a biopsy of that one and maybe two more to see if it has spread. If it has spread I will have to have more surgery, if not in 4-6 weeks I will start chemo. Yes it is the kind that makes your hair fall out. That freaked me out more than anything but I'm over it (for now). I will have 4 rounds of chemo which is 5 days of injections followed by about two weeks off. On day 22 I go for 5 more days of injections and so on 4 times. After that they will hit me with radiation. I'm not sure how many weeks of that I will have but I think I will probably glow in the dark by the time they are done with me. He said he was running 3 weeks behind so I thought that meant I would have surgery in 3 weeks. Nope. They called me within 3 weeks and my surgery is scheduled for Nov 18.