Drains Out, Port In...

It has been over a week since I last posted.  It has been a week of healing from the surgery and a week of activity.

On Wednesday, August 24, I met with Margie, my oncology nurse at Andrews and Patel.  We spoke for quite a while about the drugs I will be receiving and their potential side-effects.  I will be receiving taxatere, carboplatin and Herceptin every 3 weeks for six sessions and will continue the Herceptin every three weeks for the rest of a year.  The taxatere and carboplatin will have the effects that are expected - most notably hair loss, probably in 2-3 weeks.  One of the other things I did this week was to order a few wigs - in various shades and styles - so I can see which one will work best.  The Herceptin can possibly cause temporary heart issues so, on Friday, I had a MUGA scan.  This was an interesting test - a tube of my own blood was taken, mixed with a radioactive substance and put back in me.  My heart was then imaged for about 30 minutes to see if it is pumping correctly.  I will have this test every 3 months while I am receiving the Herceptin.

When I got home from my appointment with Margie, I read through all the material she had given to me.  I learned that I should have my dental cleaning before i started chemo, so I went to the dentist on Thursday.  I learned that the chemo can effect the results of a PAP so I have an appointment with my gynecological oncologist for my 6 month check-up next Tuesday.  I had blood drawn for a CA-125 for this appointment last Thursday.

During this time, I have still had 2 drains from my surgery.  They really are annoying and make me feel some some sort of an alien. Last Friday, after the MUGA scan, I had to see my surgeon's nurse because one drain was clogged and had begun to leak.  Fun, Fun!!!

Also during this "calm" week, Mike noticed a nasty looking spot on my back that reminded him of the melanoma I had 15 years ago.  Not too scary :)!!   Yesterday, I saw my dermatologist who removed it and reassured me that it was just a cyst.  Oh, and by the way, my car was rear-ended as I was going to the derm.  I was stopped and the other car was going too fast and didn't stop in time.  Details were exchanged, insurance companies were contacted and my car was dropped off for repairs today.  It was quite a week!!!

This morning, I finally saw my surgeon and had the drains removed - yeah!!!  Didn't hurt anywhere near as much as I had been told it might. I also was scheduled for a minor surgical procedure -the insertion of a Mediport - which will happen this Friday morning.  My first chemo infusion will be on Monday, September 12 and will take about 5 hours - I need to remember to bring a snack and beverage:).

It has been a busy and stressful week.  But through it all, God's grace and love have always been with me.  I have received calls and cards from soooo many people - a constant reminder of all the love and prayers.  It has been truly humbling.  And family has been great - available to just "talk" when that is exactly what I need.  And then there is Mike - I really can't write how important he is to me in all this.  Whether it is going to the doctor with me,reassuring me that my scars aren't horrible (they are), encouraging me to rest, doing household chores or just playing a card game called Cutthroat, Mike has been my rock.  It is interesting that after 38 years, I am more in love with him that I have ever been.

Next week should be fairly quiet.  A chance to continue to heal from the surgery and to mentally prepare for the chemotherapy. Like I've written before, it will be a "sucky" 4 months and then it should improve.  Anything is manageable for 4 months.  And with the support of friends, family and my Heavenly Father, I can handle anything.

Next Step - Chemotherapy

It is Tuesday, August 23rd.  5 days post mastectomy. I am doing better than I thought I would be at this point.  I feel like I've been hit in the chest with a 2x4 and the drains are a uncomfortable nuisance but overall, I feel pretty good.  Can totally move my arms - most important so that I can style my hair :) Wearing a post-surgical bra with little fiberfill pads for boobs.  But it is funny how your brain adjusts - looking at my chest is not pretty but I really don't miss my breasts.  Maybe I will later, but right now, in the middle of this storm, they don't seem very important.

I met with the oncologist today to see where I go from here.  Good news - the cancer is 1.8cm and the node was negative - this leads to the cancer being Stage 1.  Yeah!!  The bummer - because the cells were High Grade (8 out of 9) and the HER2 was positive (3.3), he did recommend a course of chemotherapy.  I was actually glad to hear this - I want that "insurance policy". I will be having TCH (don't ask me the names of the T and the C; the H is for Herceptin - a relatively new drug that has proved to be very effective with the HER2 + cancers.  I will have 6 courses of the TCH, 3 weeks apart and then continue the Herceptin alone every 3 weeks for a total of 12 months.  The TCH has the side effects you might expect - the one we all focus on is the hair loss.  I only hope that when it comes back next year it will be thick and maybe curly.  The Herceptin's side effect could be some cardiac issues so I will be monitored for that on a regular basis. 

I see my surgeon, Dr. Soto-Hamlin, next Wednesday, August 31st for my post-surgical check.  I will be talking with her about putting a medi-port in my chest.  This will make the chemo infusions easier to administer.  Dr. Andrews, my oncologist, said he could start the chemo in as little as 2 weeks; however it will wait until I heal enough to get the port.

All of this is a little overwhelming, to put it mildly.  It is not something I ever thought I would have to go through.  But it is temporary - I can deal with anything that is temporary.  I am focusing on dealing with the chemo and the side effects as a temporary, really sucky experience :)  But I have such tremendous support - from Mike, Matt, Nancy, Scott (as he can), my wonderful family (especially my breast cancer survivor sisters-in-law), friends and my church family.  I have been truly overwhelmed by the cards,calls and well wishes from everyone.  Don't ever underestimate the power of those cards, calls and especially prayers.  They mean the world to me and, I am sure, whoever else you happen to be sending them to.  Thank you!

Praise the Lord! The Node is Negative!

It's Friday afternoon. I got home from the hospital a few hours ago, feeling much better than I ever thought I would.  My surgery yesterday went smoothly and the really good news was that the sentinel node was negative, indicating that the cancer has not spread into my lymph nodes and, hopefully, no where else.  I will meet with Dr. Andrews, the oncologist, on Tuesday. I will likely still need the course of chemo that I was expecting, due to the pathology of the cells but, as my sister Nancy said, now it seems more like insurance that life-saving.  I guess I'll learn more about all this on Tuesday.  Right now, along with the rest of my family, I am really relieved that the node was negative.

I really could feel God's presence with me these last couple of days.  Yesterday morning before the surgery was tough.  Getting dressed to go to the hospital, I knew this was the last time I would have these breasts.  I was really sad about that then but today, looking at my incisions, really ugly incisions and drains, I have a real peace about it all.  I know that comes from my Lord. 

About the surgery itself, I can't really report anything - I was asleep.  Before the surgery, I proved to be really difficult with the IV.  It took 5 sticks in 5 different spots on my right arm before they were able to get it established.  Held up the whole OR. Oh well :).  Following the surgery, the discomfort was much less that I expected, maybe a 4 on the 1-10 scale.  By dinner, it was a 2-3.  And I had no problems from the anesthesia - no nausea or dizziness.  Mike and I had a great dinner in my very nice private room.  A pull-out chair/bed was brought in for Mike and he was able to spend the night with me.  That meant soooo much to me - knowing he was there with me.  We both slept relatively well for a hospital, not being bothered by the nursing staff very much at all.  This morning, before being discharged, my surgeon's nurse came in to discharge me and to teach me...and Mike, about taking care of the drains and incision.  Then I got dressed, putting on a post-mastectomy bra with a little fiberfill. Mike was with me when I got a really good look at my chest.  Not a pretty picture, but my wonderful husband didn't flinch, gave me a hug and told me that he loved me.  I am a lucky woman!

The anticipation of all this is over.  The trip through the tunnel is moving along. And I have a real peace about it all.  I have wonderful family and friends around me, encouraging me and praying for me.  And those prayers really do work.  God's peace is with me now and I trust that it will stay with me for the rest of the trip.

And So It Begins....

Tomorrow is my surgery.  10AM.  I am dreading it and anxious for it at the same time.  It is actually tough to be sitting here this evening, feeling great, and realizing that I am having major surgery tomorrow and will not be feeling so well.  I am not really nervous about the surgery; I am more nervous about whether the cancer has spread to my lymph nodes and what the pathology report will say.  That will really determine what the next year will be like; what kind of treatment I wil have.

I got injected in the breast this aftenoon with a radioactive something that will indicate to my surgeon where my sentinel lymph node is and hopefully that node is cancer-free.  If not, she will have to remove more nodes and my treatment will be harder. That is the next test result Mike and I will be waiting for.

Today was my last day of work at St. Tim's.  Not fun...I love the people that I see and I truly appreciate all of the support and prayers that I have received.  I hope that will continue even though I am not working there.  I needed to have the job off my mind and be able to fully concentrate on getting well.

It is strange how much my world has changed in the last month.  On July 18th I had my annual screening mammogram.  On August 18th I will have a bilateral masectomy.  What a month!  It has not been fun - to put it mildly.  But I have also learned a lot about the wonderful people around me.  So many people have told me that they care and are praying for me. Many have offered food for the family, rides to doctors, cards, flowers,  and lots and lots of hugs!  If there could be a good side to this whole "cancer thing", it is that I have learned to receive the care and concern from others and how much it means to me...and to my family!  It really, really makes a huge differnce!

Mike will be with me tomorrow and Matt and Nancy will be on the phone.  I really do hate being the cause for their stress but I so appreciate their unwavering support and love.  Somehow, in this really difficult time, I have come to a new and greater appreciation for the people around me and I feel realy lucky!

One week to go...

My bilateral mastectomy is in 6 days.  The waiting is hard.  My sister asked if I was anxious to get on with it and I told her that is hard.  I feel fine...but I know I have a cancer in me that has to be dealt with.  So I will surgery to remove a part of my body that, to be honest, I really like. :)  Then the healing, the drains, the probable chemotherapy, the possible radiation, the waiting for the pathology reports...It is hard to be anxious for all this to begin.  But I know this is what I have to do.

A good piece of news this week was that the Breast MRI that I had last Friday did not show anything in my right breast - "no surprises" was the term the nurse used when she phoned me.  I'll take any good news where I can find it.

It has been interesting to kind of observe the process my thoughts have gone in this week.  I started the week speaking with the pastor and council president of the church where I work, letting them know that I really don't know how much I will be able to work for the foreseeable future.  Watching the wonderful people at St. Tim's try to figure out how the church business will continue while I am out.  On Tuesday, I had an appointment at the store where I will get my post-mastectomy bras and prostheses.  That was difficult - it really brought home what is going to happen to my body.  I have never been vain - being heavy all my life, my body was not my source of pride.  But it is my body and it will be drastically changing...and that is tough.  On Thursday, I met with a physical therapist to go over post-surgery exercises for movement and, more importantly, to try to avoid lymphedema, or swelling, on my left side.  This was good - it made me feel that there is something I can do to help myself.

This weekend Mike, Scott and I are heading in to Staten Island to spend some time with Mike's mom, his sister and her family and his brother and his family.  Both of my sisters-in-law are breast cancer survivors - one for 4 years and one for 10 years!  I think it will be good to be with them this weekend.

I am getting really scared about what lies ahead.  I have received cards and flowers with wonderful notes that remind me that I am in the prayers of many and that God is always with me.  This I know to be true!

"In His Grip"

It's Sunday evening, usually a favorite time, relaxing with Mike and Scott and planning for the week ahead.  I have a lot of stuff in my head tonight though.  My surgery is a week and a half away.  And this past Thursday afternoon, I received another piece of my pathology report from the biopsy - the cancer is HER2 positive.  This was not good news; from all the research I have done, this makes it a more aggressive cancer and one that seems to indicate that I will require a pretty strong course of chemotherapy. Obviously not  a happy thought :).  After praying about it and talking to Mike and Nancy at length, I met with my pastor and our council president to describe the situation and explain that I need to step away from the job.  My job is as the secretary at my church; a job that enables me to interact with wonderful people who are so supportive of me; a job that I'm good at.  But the job also cannot be done sporadically; there are weekly deadlines and I am a one person office.  It is not fair to the church to not do my best and, more importantly, I honestly can't have the stress and worry about getting things done on time in my head at this time.  The meeting went well - again showing me just how wonderful and supportive these people in my life are.  I will be spending the next week and a half getting things in the office as ready as possible for whoever will replace me.  I guess this is the first of what will probably be more losses in my life.

On the medical front, I had my pre-admission testing done, including blood work, EKG and an MRI.  This was my first MRI ever and an interesting  experience :).

This really is an interesting road I am traveling down; thoughts and feeling change and develop each day.  But I know God is always with me.  I received a card from a friend, telling me that I was in her thoughts and prayers.  But it was the way she signed the card that really spoke to my heart.  She signed it "In His grip,".  I received this card on Friday and I was feeling pretty low at the time.  "In His grip" was exactly what I needed to see.  The thought of not just being in God's care or in his hands, but rather "In His grip" is very comforting to me. I know He is holding onto me, giving me strength and comfort always.

And So the Ride Begins...

Since hearing the doctor tell me last Thursday that I have breast cancer, I have been anxiously awaiting today's appointment with the breast surgeon.  Dr. Soto-Hamlin is the best in the area.  She seems to be a very kind women,explaining everything very well and talking about all the options and their risks and benefits.  I had been doing my research as well and Mike and I have spoken at length.  In the end, I decided to have a bilateral mastectomy, removing both the left breast with cancer and the right breast.  The lymph nodes on the left side will be checked by injecting the area ahead of time with a dye and removing just the sentinel node.  If the sentinel node, or "gate keeper node" shows no sign of cancer, she will not have to remove any further nodes, decreasing the likelihood of post-surgical lymphedema, or swelling. 

After seeing Dr. Soto-Hamlin and speaking with her for probably an hour, Mike and I met with the surgical coordinator.  She was able to schedule the surgery for Thursday, August 18th.  I am happy it is so soon.  I much prefer moving down this road quickly, not waiting for the next step for too long.  Jeanne, the coordinator, spoke about the variety of other appointments I should be having, (also scheduled for the next week or so), and answered lots of the questions I have about the recovery process.  I found it incredible that a surgery that seems so huge actually only requires an overnight hospital stay.   Further appointments were made for a pre-surgical physical therapy consult, a post-surgical medical oncology consult, a pre-surgical  MRI, blood work and an EKG  Wow!!

That's a lot of medical information for one day.  Mike and I are tired this evening - lots of anxiety for the past week and an overload of information.  But we are a team and no women could ask for a better or more supportive husband.  And of course, my best friend, my sister Nancy, is the one that I call any time at all and is ALWAYS there for me!  My two sisters- in- law, both breast cancer survivors themselves, are welcoming  me into that "Pink Ribbon Club." Not a group I really ever wanted to join but they are both such incredible, strong women!!

Thinking about losing both breasts in a couple weeks makes me sad.  I know it is the right thing to do and it will give me a much greater peace of mind. But I will miss them.  They are so much the outward sign of femininity.  But I will still be me, the same strong, smart woman I have always been.  And I am learning, and I am sure, will continue to learn, how many people I have supporting me...and Mike as we continue down this road.

Just a Ordinary Monday...

I have always had my routine screening mammograms on time, once a year.  I am especially conscious of doing this since I have had two previous encounters with cancer - in 1996 I had a malignant melanoma on my back.  It was removed, wider surgery was done to make sure it was all gone and I received the good news that it was all gone, having been caught very early.  In 2008, I was diagnosed with uterine cancer - Stage 1b.  I had a complete hysterectomy, including my ovaries and lymph node dissection.  No further treatment was necessary.  I just return for a follow-up every six months.  Going to these visits has been the only reminder that I am a cancer survivor.

Things change...on Monday, July 18, I had my routine screening mammogram.  The next day, a nurse called and told me that there was something on the film that had to be rechecked and that it was probably nothing.  Still gets one nervous though.  I had the repeat mammogram of the left breast on Wednesday; after looking at it the radiologist recommended an ultrasound exam.  After the ultrasound, the radiologist recommended a stereo tactic needle biopsy.  Talk about being nervous.  Each step in this process, though very necessary, began a very scary trip.  My wonderful husband, Mike, was in the waiting room on this Wednesday, expecting the repeat exam to take 10-15 minutes and it wound up taking about 1 1/2 hours.  Got his nerves on edge for sure.

Monday, July 25, was the biopsy date.  The team at Holy Spirit Outpatient Radiology was wonderful, especially the breast care coordinator, Karen.  The actual procedure was not bad at all, but I was surprised that an ultrasound was done immediately following the biopsy.  Trying to "read" the tech, the radiologist and Karen, I was getting the "vibe" that the results were not going to be good.  Again, Mike was waiting for me in the waiting room, a very wonderful welcome face when I came out.

My appointment to get the results was at 10 am on Thursday, July 28.  Karen and a very kind radiologist gave me my reports and gently explained that it was cancer.  Such a scary word... and for the third time. I had been telling Mike that I must just have cells that like to go "wonky."  My appointment with the surgeon, Dr. Soto-Hamlin will be in 2 days, on Wednesday, August 3.  I hope to get some answers and direction for the next part of this road. 

I have had cancer twice before. I know that it is not necessarily a death sentence. I am trying to look at this third cancer as just another hurdle to get through.  But i am scared.  Of the surgery ... and what kind it will be.  Of what kind of further treatment, if any I will need.  Of whether this will come back again.  Of whether this will shorten my life.  I have limited my Internet research...it can just really feed these fears.

In the past, when someone would ask how things were going or what was new, my answer would always be "Life is boring and this is good."  I loved my boring life. I guess life will not be boring for a while.

I am writing this blog because it is important to me that I keep a record of what is happening.  And because it is easier to write how I feel than to say it.

I have the best husband and family!   Mike and I always say we are a great team but it is in these difficult times when that really comes through. 

I know God is with me.  My prayer is for peace with all this, for guidance, for His comforting presence.  No matter how this trip goes, I am never alone.