Preop Appointments--Preparing for Surgery #2...........

1/4/13--Friday--Day 83--T-Minus 3 Days--Monday Can't Come Soon Enough

We just got home from a crazy two day trip to Mesa.  Yesterday we were able to cram all four doctor appointments into one day and four hours.  I love that about the MD Anderson Cancer Center.  They never make you wait, yet never make you feel rushed through an appointment.  Where else can you see four doctors in four hours!

When we woke Thursday morning to head down for the day, we realized if we didn't spend the night and take Brooklyn with us, we wouldn't have a chance for her to help with the wig shopping.  Plus, she and I had planned to do a makeover at one of the department stores, but since I had been trying to get over a cold before surgery through the entire Christmas break, we hadn't made it back to the city.  So we woke her and the three of us left a little later than planned.  In Mesa, Brooklyn dropped us off at the cancer center and went shopping while we headed in to hear all the preop details.

First we met Leona, the lymphedema specialist.  Dr. Cianfrocca wanted me to see her prior to the surgery so she could take baseline measurements in case I developed lymphedema in my right arm.  She came out to the waiting room shortly after we checked in and escorted us back.  Instead of stopping in the long hallway in the middle of the building where all the exam rooms are located, she took us back to the next section where the offices lined the far side of the building and had windows looking over the parking lot.  We hadn't been to that part of the building before.  She had educational posters on the wall outlining the lymph nodes throughout the body--they are everywhere--and started educating us about how the lymph system works.

I've heard of lymph nodes all of my life, but never really took time to know what they are or what they do until all of this started.  She explained that the lymph system is the drainage system of our body.  Blood runs through our veins to various parts of our body and plasma carries all of the good things like oxygen and nutrients to our cells and tissue.  After it delivers this to the cells, as it exits each cell, it cleanses the cell and tissue removing bad things from them.  Most of the plasma goes back into the blood stream for the return trip but a small amount of it, about 10%, remains behind in our tissue and enters our lymph system.  This fluid, filled with waste from our cells and tissue, travels through our lymph system which has hundreds of lymph nodes.  The lymph nodes are filled with white blood cells and cleanse the the waist product from the lymph fluid before it moves on.  Eventually the clean lymph fluid re-enters our blood stream.  I probably didn't explain that completely medically correctly, but hopefully that makes some sense.  What's interesting is this lymph system is like a whole other circulatory system, but it doesn't have a heart to pump it.  It is all connected through ducts and all of the lymph fluid flows upward to our neck where it eventually reenters our bloodstream after being cleaned through a number of lymph nodes.

SOOOOO, maybe that explains why cancer, which was in my breast, moved into my lymph system.  The lymph node where they found a 1cm tumor just became overwhelmed with yucky stuff, too much to clean, and the cancer overtook it.  SOOOOOO,  on the drainage part, when you remove a couple of scoops of these lymph nodes, you interrupt this drainage system.  SOOOOO, hopefully, the fluid finds new paths in other parts of the lymph system.  HOWEVER, sometimes, the drainage doesn't happen fast enough, so you experience swelling in your arm from this yucky left over fluid.  THAT is lymphedema.  Whew.  That was a lot of medical knowledge!

We have three levels of axillary lymph nodes which are located from our armpit up toward our neck by the collar bone.  Like all the professionals at the cancer center, Leona had studied my case, and knew what each of the doctors on my team were doing with me.  "Dr. Byrum will only be taking the level one and level two axillary nodes, but will leave the level three ones.  That will help," she explained.  Using the posters, she showed us how the lymph system tries to compensate and find other paths for drainage when some of the lymph nodes are removed.  That sounded positive enough, but like always, there seems to be a not-so-positive side.  Because the right side lymph nodes drain only the arm and right side of the face, there is more like an 80% chance of developing lymphedema when you remove the axillary nodes on the right side--of course!

After our lymph system education, Leona showed me compression sleeves.  These are tight, custom-fit sleeves you wear to help discourage liquid from accumulating in the arm, or basically to push the lymphatic liquid back out.  As I slipped my arm through one and tried to pull it up, it was like trying to squeeze into a wetsuit that was two sizes too small.  Hmmm, not so good for someone who doesn't wear a wetsuit because she can't stand feeling confined.  This will be a challenge, I thought to myself.  She explained that I should wear the sleeve any time I travel on an airplane or any time I increase my activity level in that arm.  She also explained how a low sodium diet will become important and how she will teach us some massage techniques to help stimulate the circulation   After examining the sleeves, she had me change into a gown and she began measuring me.  She lined my arm with a special tape measure and made small marks about every two inches from my fingers to the top of my shoulders.  Then she took a measurement around my arm at each mark.  She did this on both arms so she had a comparison.  If the tumor in my abdomen is cancerous, Dr. Schlumbrect will remove the lymph nodes by each pelvic bone and the ones in my abdomen as well.  Therefore, she had to do the same complex measurements on each of my legs, just in case.

We finished just in time to make my next appointment.  As she walked me back to the middle hallway exam rooms, she explained that she would see me Tuesday in the hospital to review some of this again before I was released.  She handed me a small stack of papers to study about lymphedema.  In the hallway we ran into Dr. Schlumbrect who took us into one of those conference room with two couches and a computer.  As he began talking, he seemed much more personable than our first meeting in December.  I found myself joking with him and laughing and felt more at ease.  First he showed us the results of the vaginal ultrasound he had me do on our last visit.  The image came up on the screen and he showed me how the tumor actually measured 11.5 cm instead of 10 like the PET scan showed.  He explained how he still felt good about it probably not being cancerous.  He said tumors that have high levels of cancer usually show lines through them but mine didn't, so that was a good sign.  If it is cancerous or borderline cancerous, he explained that he would take the pelvic and abdominal lymph nodes.  He then spent nearly 45 minutes explaining the hysterectomy and tumor removal procedures in detail and answering all of the questions I had.  There will be no drain tubes, that's good.  There will be five small incisions, two in my lower abdomen, one in my belly button, one more to the side and one higher up on the left.  He emphasized that even though this is laparoscopic surgery on the outside, the largest incision will be on the inside and it is major surgery so I needed to treat it as such.  He will remove my uterus, ovaries, and tubes, but what I didn't realize is that means the cervix too.  That was interesting.  Once all of the stuff comes out, he sews together the top of the vagina, which is what is the largest incision and takes the most recovery.  If he has to take the lymph nodes, he can still do those laparoscopically.  I will be in the hospital Monday night, and if I can do all the bodily functions--eat, potty, and fart, lol--I can be released on Tuesday but he wants me to stay in the area Tuesday night as a precaution.  I'll have a catheter until Tuesday morning, yuck, but he assured me I'll thank him for that because I won't really feel like getting up.  I asked him if he would remove some of my belly fat while he was in there, but he said that was a no-go.  Bummer.  Then the typical--no lifting, strenuous activity, baths or hot tub for six week.  He'll see me back in two weeks.  He said his part of the surgery will take about 2.5 to 3 hours if the tumor is not cancerous and 4 or more if it is.  Then he gave me instructions for a bowel prep the evening before--wow, that didn't sound so fun--and only clear liquids starting at noon on Sunday with nothing after midnight.  That's it.  I was prepped and ready for his part.  As he exited the room, a nurse whisked us off and down the hall to see Dr. Byrum for her part.

I had lots of questions for her, the first being why were we taking these lymph nodes!  I had been questioning that for awhile but after the 80% of the patients develop lymphedema fact, I really questions why we were doing this.  She disagreed with Leona and said the percentage of patients who develop lymphedema isn't even close to that high.  Then she explained why she felt it was important to do the surgery.  She reviewed all of the evidence with us again and based on the size of the lump she removed originally, the type and aggressiveness, and the fact that the sentinel node had an additional tumor, she felt very strongly that we needed to remove the axillary nodes.  Then she explained a little more about them.  After seeing the posters in Leona's office, it seemed like they were little marbles throughout the lymph system.  Dr. Byrum said the axillary lymph nodes are more like a handful of chicken fat.  She said she can't tell how many lymph nodes she is removing when she cuts out that fatty looking glob.  Only after it is evaluated by pathology, which takes several day, will she know now many she took and whether or not they were cancerous.  "How will you know you won't be taking the level three ones then," I asked.  She explained they are higher up and behind a different muscle, so she knows she will only get the level one and twos.  That will greatly help reduce my chances for developing lymphedema.   She will use the same incision under my arm where she took the two sentinel nodes but will extend it by a centimeter or two.  That's good because two spots in that scar opened up a little so she will cut the old incision out and redo it.  I will have a drain tube in that area because it is such a small and compressed area and it can't absorb the blood like the abdominal area can.  That will be in for one to two weeks depending on when it stops draining.  I told her my concerns about the inner mammary node not being taken and she explained the complications of removing that one, plus, we can't confirm it is cancer.  That was interesting, but she said the PET scan shows activity in an area and since I had just had surgery close to that area, we can't be sure it is showing cancerous activity and not just healing type activity.  I'm not sure I believed that, but she assured me the radiation and chemo would take care of it if it was cancerous.  She did say the area that will be radiated will most likely be expanded farther out than the original discussion because of the sentinel lymph node being positive and the possibility of that mammary node having cancer.  Her part of the surgery would be about 1.5 hours so going in at 1 PM, I probably wouldn't be out of the operating room until 5:30 or 6 and then in recovery for 1.5 to 2 hours.  I realize what a long wait it will be for Greg and I am really glad he will be surrounded by family and close friends.  I know he'll be nervous.

From that exam room we were led down to the end of the hall to see Dr. Munoz.  He had some good news.  After putting all of the factors into the risk calculations, at this time he was only recommending Lovenox for 28 days rather than the six months.  That was great news.  He still had to run it through insurance, and, if the large tumor ends up being cancerous and they change the chemo medications they are considering, that may change, but for now that was good news.  The bad news is it is twice a day rather than once.  Yuck!   The thought of shots in my tummy once a day were bad enough but twice a day sure wasn't going to be fun, but 28 days was still better than six months.

It was just approaching 4 PM and we were done!  Whew.  Brooklyn picked us up and we made one more stop before heading to spend the evening with some friends for a relaxing night and a sleepover at Preston's.  Friday morning we headed to Costco for some quick shopping then to the wig shop.  It was important for me to have Brooklyn be part of picking out a wig.  Several weeks before Christmas we had spent a day at a wig shop across town, but there was another shop that came highly recommended, Suzie's Wigs, and it was in Mesa.  Brooklyn had always been my fashion consultant and since she wasn't going to be home during the first few months of my chemo, I really wanted her to be part of this.  When we walked in, they had at least twice as many wigs as the first shop where we looked.  I immediately liked several of them.  The associates were busy helping a woman about my age who was trying on different styles.  It seemed odd someone my age would be buying a wig just for a hairstyle, but that was what she was doing, or at least that's what she said.  An older couple was waiting as well.  I figured they would be thinking the same about me looking for a wig with my nice, thick hair so I immediately started making comments about losing my hair in about six weeks.  At first I could tell it shocked the older couple but I kept a smile and an upbeat appearance and that seemed to put everyone more at ease.  I tried on a few wigs while the other woman was trying to make her final decision.  I loved one she had picked out so she let me try it on before she bought it.  It looked good but was a bit too curly.  Brooklyn wanted me to go with a completely different look than my normal look so we tried on some with long straight hair and bangs.  They looked good, but I still wasn't sold.  Soon the older woman had put on the wig she had ordered and the ladies adjusted it.  She looked great.  As they left the store, the man stopped and looked me in the eye and said, "I wish you the very best of luck with your treatments."  That meant a lot.  I knew he felt bad for me so I sincerely thanked him and assured him everything was going to be okay and he smiled and nodded as he left.  I sat in the chair and tried on half a dozen different looks until I found the one that seemed perfect.  It almost matched my current hair perfectly.  I wanted to see it in the sunlight, and she said I could go outside with it.  All of a sudden my heart started racing.  It's one thing to be light hearted and try on wigs in a wig store.  It's completely different to leave that safe zone and enter the real world.  I took a deep breath, swallowed my anxiety and faced it head on as I walked outside with a mirror.  It looked good.  Greg took a few pictures outside in the sunlight before we went back in.  I tried on a few of the others again just to make sure then returned to the perfect one.  The associate agreed to put it on hold until Monday.  I wanted to return right when they opened on Monday before I go to the hospital.  That way I could walk away for the weekend and make sure.  Besides, Mike and Suzie would be with us on Monday and it would be two more sets of eyes before we made the $300 commitment.

After leaving the store, I had a unique opportunity to meet up with Heidi, my friend from high school whose mother is going through breast cancer.  When I was first diagnosed, I found out Heidi's mother was about three weeks ahead of me in her DCIS diagnosis and Heidi and I spent hours in the middle of the nights texting back and forth about details we were both just learning about.  That was when mine was "just DCIS" and wasn't really going to be a big deal.  I haven't seen Heidi in 30 years since she attended our wedding.  It's amazing how Facebook makes it seems like you've seen each other just last week.  She and her husband were in town unexpectedly (she lives in Louisiana) due to a family emergency and our recent connection through the cancer made it imperative I see her.  We visited for almost two hours and it was extremely comforting for some reason.  Maybe it's the old saying "misery loves company" but talking and texting with someone going through the same thing at the same time just makes an extremely emotional connection.  From there we got a bite to eat and headed to the mall for the Brookie make-up makeover.  It was the perfect ending to the trip.  I loved watching her get a makeover and us deciding what to buy together.  She looked amazing and everyone kept commenting on how beautiful she is.  Those are the little things that make your heart smile, even in the middle of this stupid cancer thing.  Though we didn't make it home until after dark, I was glad we spent an extra day doing something fun rather than just making a day trip filled with doctors.

So as I wrap up this blog post, the countdown to surgery is close, T-minus 60 hours.  And while I know this is far from the end of the cancer, hopefully it will mark a milestone by being the end of the unknown.  I am a little scared, but I've come to accept the hysterectomy and I'm settled about that.  I feel a little less anxious about the inner mammary node that will stay inside of me.  I feel somewhat nervous about the potential side effects of the axillary nodes coming out, but more sure of the necessity for them to be removed.  I pray the tumor is not cancerous, but if it is, we'll deal with that too.  At least we'll know.  So for now, Monday can't come soon enough.