What I Have to Say One Year After My Double Mastectomy

One year ago today, August 22nd, 2014, I had a double mastectomy to remove my breast cancer. Today, one year from this surgery, maybe I will celebrate this milestone by going for a run. Maybe take a quiet walk in the woods.  Maybe go to dinner with my husband.

I went into the surgery last August with complete trust in my surgeons. Dr. Erb, my breast surgeon, would remove the tumor, all of the breast tissue, and all of the lymph nodes in my left armpit. She was well qualified: an oncologist breast surgeon, a breast cancer survivor herself. She was old and curt-- which made me think she was probably a smart and experienced surgeon. Then there was Dr. Michael White, my plastic surgeon with the name of a soap opera doctor.  He would take over the surgery after Dr. Erb removed the breast tissue. Dr. White would start the process of breast reconstruction by putting in expander devices underneath my chest wall, moving muscles from my back to my chest to support the devices, and sew me up nice and straight across my chest. (I can explain the process of the reconstruction that I chose at a later date, but just know that this was one of several procedures that I would have. However, this was the most invasive procedure.) Dr. Michael White was recommended to me by MANY people in the Pittsburgh area, including doctors, who called him a "perfectionist" and "the best reconstructive surgeon in Pittsburgh." Plus, he was nice to boot, so...yeah... I felt at ease in his hands, too.

The night before my surgery, Craig and I drive down to Pittsburgh to spend the night at my sister Natalie's place. She made us dinner. As Natalie, Matt (brother-in-law), Craig and I washed the dishes, we had a dance party to Taylor Swift's "Shake it Off". My mom arrived to spend the night as well, and hugged me close.

The morning of the surgery, at 5am, Craig and I drove the 20 minutes to Allegheny General Hospital (AGH) to check in for my surgery.  Not one person in the waiting room was in my age bracket. I went back to the surgery prep room where I donned the hospital gown.  The surgeons came in to greet me and wrote on my breasts with marker. A nurse came in and stabbed my nipple with a dye that was needed for surgery. Yeah nipple-stabbing feels as bad as it sounds. When it was time, the nurse started to wheel me away to the operating room for a 6 hour surgery.  Craig held my hand until he couldn't any longer. I saw tears in his eyes as I was rolled away from him.  My mom was also trying to hold it together. I know what they were thinking, "I hope she comes out of this okay."

Six hours later, after the surgery, my memories begin again as I slowly regained consciousness.  But Craig will tell me many months later what those 6 hours were like for him.  He said that Dr. Erb, the oncologist surgeon, came out to the waiting room after her part and informed Craig, my mom, and Natalie that the cancer was worse than they thought-- it was invasive and was found in the lymph nodes. I can imagine that was one of the scariest moments of this whole process for them. Craig was given this horrible news and I was not even there to process it with him.  On the contrary, he had to deliver it to me in a few hours and attempt to stay strong.  He couldn't fall apart at this point. We have a rule in our marriage: only one person can fall apart at a time. And, since I had just undergone surgery, I naturally claimed that role for the day. Craig will later tell me that when he heard the news he went for a walk and cried.  That he called his parents and cried. The next day, he was relieved of his caretaking duties for a few hours, so he took a shower and cried his heart out. In the last year, as I have talked with men who have watched their wives suffer, I have learned that the shower is the place that many men cry. I know that Craig was crying because he was now not sure if I would live or die after this new cancer diagnosis. However, my memories of that day are slightly more humorous than Craig's.  So, feel free to pick your heart up from that puddle of tears on the floor, continue reading, and I will tell you what Katie On Drugs remembers. 

That afternoon, I remember waking up in the recovery room disoriented. I had this sense that I was in some sort of Romanian orphanage because of all of the beds lined up in one big room.  Then, I remember floating in and out of consciousness once I was moved to the private hospital room. At one point, The Robb Clan arrived with a "Picnic Dinner in the Hospital Room." I think there was a crock pot involved. I remember my loud sister, Elizabeth, sitting right next to me and waking me up every time she spoke/shouted.  I remember someone eating a bag of chips across the room.  Oh.the.crunching. I remember mustering all of my energy to faintly eek out my first words of the evening, "stop crunching." But no one heard me.  In a whisper a little louder than a mouse fart, I tried again, "stop crunching."  Still, no one heard me.  I tried it a third time, "please. stop. crunching." Each word a labored effort. Amazingly, loud-sister Elizabeth heard me over the sound of her own voice, and she says/shouts across the room, "SHE WANTS YOU TO STOP EATING CHIPS. SHE SAID STOP CRUNCHING. MOM, STOP EATING CHIPS." The room goes silent. My mom, "Who? Me? Oh!" Then she smacks my dad on the arm, "Tom, why did you bring me these?!" Somehow, my always-well-meaning father takes the blame for this one. The evening continues on with eating, laughter, and loud talking. A little further in the evening, Katie On Drugs tries to say softly, "You guys can go now. You guys can leave. You guys can go now. I'll be okay."  I guess The Robb Clan is better in small doses after surgery. It's funny how I remember these lighter moments, the moments when I was coming in and out of lucidity.  But as I look back on that time, I also remember that never once was I alone.  I look back, and I remember my mom by my side, my whole family by my side, really. As much as my family was grappling with this nightmare for themselves, their number one goal through it all was to make the experience easier for me.

My recovery from surgery is a story for another day. But today is the one year anniversary from the surgery itself. So, today, I am celebrating my healthy body, the miracles of modern medicine, trustworthy surgeons, and a family that "shows up", even with chips.

Some pictures of that weekend:

Katie On Drugs and Caretaker Craig (one day after the surgery)

Caretaker Craig, me, Natalie, and Always-Well-Meaning Dad 

(two days after surgery)

Not pictured: the rest of The Robb Clan

Peeking My Head Out of the Hole

Hello! Let me crawl out of this little hole here for a second. It has been about three months since I last updated this blog. That has been for a reason: life has been freakin' hard. I decided (at the encouragement of others) to just focus on being well for a little while instead of worrying about keeping everybody in the loop. And to be honest, for a few months, blogging was the least of my concerns. But today, glorious today, I am feeling good and thought that I would take advantage of it to write a little about my experience.

There is no way to put into words what the experience of these past few months has been like. And it is daunting to think about summing them up. So I won't. Maybe time and space and healing will allow for me to write more fully about the experience. I pray it will because I believe that when we tell our stories they have the opportunity to give someone else strength or hope or freedom. I know that I often rely on the stories and experiences of other women to give me strength and guidance. So I hope to do that in small ways as well. Let's give it some time.

After my surgery in late August, and when we found out that the cancer was invasive in September, I retreated to my corner. No longer did I feel like the strong face of young women with breast cancer. I needed to retreat to my corner and let a handful of my people in my corner take care of me. And take care of me they did. I completed a very intense 4 rounds of chemo (AC) from mid-September to mid-Nobember. During those months I was usually in "survival mode," unable to think about anything beyond getting calories in my body and getting sleep for my body. Thankfully, I had my Handful to take care of me on a very basic level, even if they couldn't do much for me. They drove me to appointments, held my hand, made me meals, let me rest, and held me when I despaired. They reminded me over and over, "Katie, you can do this. We are here with you. Keep holding onto the rope. And when you feel like letting go, we will hold you onto the rope. God is good and God is love, even when it is too dark to see it." Thank you, Handful, for speaking those reminders to me with words and actions.

That is all that I will say about that at this point. There is much more to say, and maybe I will, in time. Currently, I am in the second phase of chemo and have weekly rounds of chemo until January 30th. This second drug compound (Taxol and Herceptin) that I am getting is much more tolerable. That is huge. Tolerable is the best thing since sliced bread. I have gone from feeling "horrible" to simply "bad."  Yay! In all honesty, I could not be more grateful for that.

Thank you for the small ways that each of you support me. I continue to rely on my Handful for most support these days. But you can continue to pray for strength and peace as I go through this chemo treatment. On my good days, I am very aware of Strength and Peace in my life. On my bad days, I trust the people around me to believe it for me for a time.

May Peace be with you, as well.
Katie

PET Scan Results, Chemo Start Date, and Treatment Plans

Hey y'all, 

I'm just gonna come right out and say it: The PET scan was CLEAR!!!!  My doctor actually called us that afternoon to give me the good news.  You may be asking, "What does this mean?" Well, it means that, as far as they can tell, the cancer has not metastasized to any other organ.  That is great news.  So we feel like we know what we are dealing with and we will continue with the treatment that my oncologist has laid out for my breast cancer. We were SO relieved to hear this news.  We were honestly preparing ourselves for the worst because we did not feel prepared when we found out the news last time that my cancer was invasive in the first place. But now we can just be thankful and our hearts can rest a little bit.

The other news is that I start chemo this Thursday, September 18th. More info below.

Below are some of the questions that people may be have...

Where will you get your treatment? We decided on the Cleveland Clinic.  It is an amazing facility with amazing resources and it is only an hour and a half from where we live.  We are so thankful that one of the top cancer treating facilities is so close to us. We believe that I would have received excellent care at AGH in Pittsburgh as well, but Cleveland is a little bit easier logistically since my parents are near. 

What will your treatment look like? There are 5 main treatments for breast cancer: surgery, chemotherapy, targeted therapy, radiation therapy, and hormone therapy. And I will be getting all of them!  They are basically throwing everything they have at this cancer. The idea is that the surgery got out the whole cancerous mass.  However, there may be cancerous microorganisms floating through my body.  The chemo and other therapies are designed to kill any microorganisms, to prevent any from coming back. As for all the treatments, I already has my surgery, so that is done.  Over the next 5 months I will be getting chemotherapy and targeted therapy (16 rounds of chemotherapy in total). The first 4 rounds of chemo will be every other week.  The last 12 rounds of chemo will be weekly.  My plan is to have my chemo on Fridays so that I can recover on the weekends and return to work on Mondays. The targeted therapy is an IV drug that is similar to chemotherapy.  It is called Herceptin and will attack a special feature of my breast cancer called HER2. This drug has been called a 'miracle drug' by some because it is so effective at attacking that protein of the cancer cells.  We were actually very thankful to find out that I was HER2+ because that meant that I could take this drug! I will get the Herceptin with my chemo for the last 12 rounds, and then I will get it every 3 weeks for up to 1 year (until next November-ish). After my chemo is done, I will do a month of radiation therapy everyday.  From what I understand, the radiation is directed at my chest wall for just a few minutes every day, and it is designed to kill any lingering cancer cells in the chest wall. After I am done with radiation, then I will start the hormone therapy.  Hormone therapy will be a pill that I will take every day for 5-10 years. Another feature of my cancer is that it is estrogen+ and progesterone+, so it feeds on estrogen or progesterone.  The idea behind the hormone therapy is that it will block the estrogen in my body in order to prevent recurrence. These treatments will not be easy, but we are thankful to be at a place where we are now working on the solution.

How did the fertility treatments go?  They went great!  It was a lot of work to go through the process of freezing embryos, but we are not complaining because it was really important to us.  We are still floored by the fact that a foundation would pay the $12,000 for us.  We are beyond thankful.  After many appointments and nightly injections into my abdomen, we had the retrieval last Friday, the 12th. It was a relatively simple procedure for me (I mean, after a double mastectomy my standards have adjusted) and I had no pain afterward. They called to let us know that they were able to fertilize 12 eggs successfully and will be freezing the embryos for us to use at a later time. They usually shoot for about 10 good eggs, so 12 sounded good to us.  Plus, kids are cheaper by the dozen, aren't they?

In other news, I talked with my awesome boss today and we have planned for me to return to work part-time next Tuesday, September 23rd.  She has been very understanding and is willing to be flexible with my schedule as I go through chemotherapy these next few months.  Pray that blessings are heaped on her :)

Other than that, we are just preparing for me to start chemo on Thursday.  We are curious how I will react since chemo is so individualized.  We will let you know how everything goes once we lift our heads above water again! For now, here are some pictures from my past week...

My sister Eliz came to hang out and watch movies for a day :)

Natalie, my mom, and I had a blast trying on wigs over the weekend. I did find one that I liked, but we found this one to be particularly hilarious. Don't I look like Kat from 'Garth and Kat' of SNL? I could not stop laughing. (In case you have misunderstood, this is NOT the one that I chose.)

katie

Fertility, PET scans, and the Edinboro Sky

Here is an update on a few things:

1. We have decided to go with Dr. Halle Moore at the Cleveland Clinic as my oncologist.  We feel really good about the care that I will get at the Cleveland Clinic and that I will get from her.  When we met with her she was kind, relatable, decisive and brilliant.  All of the things one could want in an oncologist!  She set out a treatment schedule of chemotherapy (over next 5 months), targeted therapy (for a year starting in November), radiation therapy (everyday for a month once chemo is done), and hormone therapy (a pill that I will take everyday for the next 5-10 years).  Basically, they are throwing everything that they have at this cancer.  My doctors feel confident in the treatments that they have, and so do we.  We also know that I have youth, general health, support, a sense of Peace, and a positive attitude on my side! At this point, on this day, we feel hopeful that the treatment will take care of it and I will be starting to feel healthy again by next spring/summer.  My hope and plan is to work during the treatments as long as my job is able to continue being flexible with me and give me almost every Friday off.  I would like to work because I love my job and I want to maintain a sense of normalcy.

2. We are going through fertility treatments right now! We are doing the first half of IVF to retrieve eggs and then freeze embryos for a few years until my doctor says that I am healthy enough to carry a child. Right now, it is a little crazy with going to Cleveland for appointments every other day and Craig giving me fertility shots in my abdomen every night, but we are SO thankful for this opportunity, for this modern medicine, and for the Partnership Foundation that is covering the cost for us. The minor surgery for retrieval will most likely be happening next weekend, which is exciting!

3. Also, I have a PET scan tomorrow (Tuesday).  Please pray for us tomorrow because this PET scan is supposed to tell us if the cancer has spread to anywhere else in my body.  We are obviously praying that it has not, and we would appreciate if you would pray that with us.  Also, please pray for our hearts if we find out that it has. It is certainly not a death sentence, but it does make things more complicated, and I am not sure how much more bad news our little hearts can handle at this time.

4. Chemo is set to start at the end of this month, so pray that I will continue to heal physically so that I can be as strong as possible going into the chemo.

5. Lastly, here are a couple glimpses into my life the past few days:

Our dear friends, Sarah and Chris came to visit.  These are the things that we did: went to the Edinboro Highland Games, watched Seinfeld, and road-tripped to Cleveland for a doctors appointment! This was taken at Edinboro Lake.

A view from my walk this morning.  Can I just say that the sky in Edinboro is beautiful?!

I'm Hanging In There

For those of you that are wondering: I'm hanging in there.

Each day is different. Most hours are different.  Some minutes are different. I go up, I go down, most of the time I am a little bit above the middle, so that's good.

Here are some things that are consistently true of my life these days:

1. Each day I feel a little bit better and I am able to do more.  Some milestones in the last few days have been: sitting up in bed by myself, reaching up to turn on a lamp by myself, and putting in my own ponytail!

2. Cancer is overwhelming.  Like, really overwhelming.  But there are pieces of Light in the midst of this messiness and I am looking for those.  I have found them in unexpected kindnesses, people I love, and belly laughs. I have also found them in soft jammies, deep naps, and nature.

Soft jammies and time in nature (at Edinboro Lake).

Notes from loved ones.

3. My short term memory is terrible.  Could be the drugs.  Could be that it is overwhelming to have cancer.  But I do know that I have to set reminders for everything, I often forget what I am doing if I am interrupted in the middle of something, and I wonder if this is what it is a little bit what it is like to have ADHD.

4. People are nicer to you if they know that you have cancer.  And people don't expect a lot of you if they know you have cancer AND that you just had surgery.  I use that to my advantage.  For instance, you are reading this post and forgiving me for the fact that it is so choppy... because I have cancer.  Thanks.

5. I cannot predict how I will feel or what I will be doing at any given time. Sudden mood changes: one minute I am happy, the next minute I am annoyed.  Sudden physical changes: one minute I am exhausted, the next minute I am ready to walk to the kitchen. Sudden life changes: one minute I am free to chat with a friend, the next minute something comes up and I cannot handle any phone calls.  Sorry friends. Thanks for understanding.  I have cancer.

6. Lastly, I have good people around me. Here are some of the people below that have been able to be physically present. (Not pictured is Daddy-o Tom Robb, who came to oncologist appointments to help us sort through all of the details. Thanks, Dad!)

My mom took care of me for the first week on the days that Craig had to work.  Natalie came to help too!

This stud is a Professional Husband. I love him.

This is Grace.  She is my friend.  She came to take care of me for Week 2! She rules.

Cancer Update

So a lot has happened in the past week and it has been a very difficult week to say the least. We have been very busy attending various doctor appointments and Katie has been working hard to recover from her surgery in the midst of this.
We received some news from the pathology report that we were hoping not to hear. Cancer was found in some of the lymph nodes and to be invasive in the breast. Based on this information they are staging it as a stage 3 cancer. This came as very shocking and scary news and we have been grappling with processing this while at the same time meeting with doctors to get a treatment plan in place as quickly as possible.
On Friday we met with Dr. Halle Moore, a medical oncologist out of Cleveland Clinic. We felt as though the visit with Dr. Moore went very well and she comes highly recommended. Dr. Moore says this is an aggressive form of cancer and, given Katie's young age, she is recommending an aggressive treatment regiment to try to eradicate the cancer. Starting in a few weeks, Katie will be undergoing chemotherapy for a few months, followed by radiation therapy and another IV drug similar to chemotherapy. Once this regiment is complete, which will be about a year, she will then take an anti-hormonal medication for at least five years. On Tuesday, we will be getting a second opinion from another medical oncologist in Pittsburgh.
Due to the chemotherapy, another thing we've had to plan for is preserving Katie's fertility. The process to best preserve Katie's fertility is to harvest and freeze embryos that can be implanted via IVF at a later time. This process typically costs up to $15,000. However, we have been very fortunate to come into contact with a fertility doctor out of the Cleveland area who has set up a foundation. This foundations allows cancer patients who are at risk of losing their fertility to receive these procedures at no cost. This has been an incredible relief to say the least. The plan is to complete the egg retrieval before Katie begins chemotherapy. This means more doctor appointments, but it is something that is of vital importance to us, so it's worth it.
Dr. Moore also would like for Katie to have a PET-CT scan soon in order to see if the cancer has spread to anywhere else in her body. We do not yet have a date for this scan but we anticipate having it in the next week or two. The prospect of the cancer spreading to another area of Katie's body is very scary. Please pray and send positive thoughts that this scan comes back completely clear.
Thank you to everybody for your continued support. This news changes the reality of the cancer for us. We will most likely not be able to update the blog as often due to the craziness of this time. We may have a friend do most of the updates for us going forward. We still appreciate cards and other ways of support. We also welcome your thoughts and prayers as we wade through these new waters. We are hopeful and optimistic that the treatment will be successful. Katie is a very strong person and has a lot of support around her to aid her in this process.


 

This is a picture of Katie and Dr. Goldfarb on Friday. He is the doctor who will be directing Katie's fertility treatment. He also set up the foundation that covers the cost for cancer patients. We think he's great.

 Here is a picture from last Monday of Katie opening letters/cards of support. She really appreciates these and the other ways that you all have been supporting her.


Thank you,

Craig (and Katie)

Nights at the Hospital

It has been overwhelming to think about posting since there is so much to process, so much happening, just so much.  But I thought that it would be best to start small.  Here is something I wrote a few days ago about my 2 nights in the hospital.

I wrote this on Tuesday:
Right now I am doing so much better than I expected. To think that I just had major surgery 4 days ago and I am already up and about, taking short walks, going to the bathroom myself, and getting small things for myself is amazing.  I was frail for about 2 days and then my body started kicking into high gear.  I hardly have any pain, and I am feeling remarkable good!  Unfortunately, they found some cancer in the lymph nodes in their initial test during surgery.  So they went ahead and took out as many lymph nodes as they could in my left armpit. I will try to walk you through the last 4 days.

I had my bilateral mastectomy with initial reconstruction on Friday, the 22nd.  The surgery was about 6 1/2 hours, I recovered for about 2 hours, and then Craig and my mom got to come back and see me.  Recovering was interesting because I was in and out of sleep for many hours.  The recovery room was a weird orphanage-like room with lots of beds lined up, and in between losing consciousness I could hear people call for nurses, get sick, and cry out in pain.  I remember being in pain when I first woke up, but they took care of me and quickly hooked me up with my very own morphine drip. The food of the gods. I think some family visited me that night, but I mostly just gave into sleep whenever I felt like it.

They were days of many firsts. My first night ever sleeping in a hospital.  It's an odd experience.  Someone strange barges into your room every 2 hours to do something for you.  Most of them were kind nurses or well-meaning doctors.  However, there was a strange man with a briefcase that barged in and offered to sit and watch me all night.  Um, no thank you. (Ethan from Lost, anybody??) Craig had that covered.  That night I drifted in and out of very deep, mouth open, drooling sleep. It was cute.  Another cute thing was also a first: a catheter.  Also: having a kind nurse wipe you as if you were an adult baby. I was channeling my inner Benjamin Button. All strange firsts that I can now cross off my bucket list. Done and done!

Day 2 started out really good.  They took me off the drip and started me on Norco pills.  I got my catheter out, got help walking to the bathroom, sat up in a chair, got a visit from some friends.  All was going well and good.  Then suddenly the morphine was fully out of my system and the Norco was not working for me. Thus started the worst of it all. Saturday later afternoon, evening, and night were very long hours of pain. Craig stayed awake to comfort me and advocate for me.  I remember that a friend from church came to visit me. She anointed me with oil and prayed over me. Doctors and nurses started giving me morphine injections to keep me as comfortable as possible throughout the night. That did help.  I was not sure how I was going to make it through the night.

This is a picture from Saturday. I was feeling alright at this point but it got worse as the day wore on.

By morning they decided to change my pain pills to Percocet in order to try to get me off the morphine. And Sunday morning, sabbath, my friends, was the turning point!  They figured out that Percocet worked well for me. Also, my nurse Linda lovingly whipped me into shape. When I pitifully could not raise the pain pills to my mouth and asked Craig to do it for me, Linda was all like, "No, Honey.  You need to do that yourself.  And you need to be getting out of bed and walking the halls.  You are going to get pneumonia and a blood clot if you keep up with this." Thank you, Linda. With some working pain pills in my system, I was willing to try these things.  A few hours later I was washing my face, putting my mascara, walking the halls, and dancing in my room with my husband!  What an amazing turn-around!

Here's a picture of me Sunday morning with Craig, my sister Nat, and my dad when I was feeling much better.

I was able to leave that Sunday afternoon and have been getting physically stronger ever since. Craig and my mom have been doting on me and caring for my every need.  Nurses are saying that my scars look good.  There is some swelling and tingling, but time will tell if that lingers. Overall, I am recovering well from the surgery, and I am thankful for that. Thanks for your prayers!

This picture was taken on Monday during my brief walk outside for some fresh air!