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!

Surgery update

Hey all,
Katie just got out of recovery room after surgery and is getting ready to go to her hospital room. She is doing fine and has been extremely strong throughout the day. She was in surgery from about 8am to 2pm. We will update with more info soon. Please continue to keep her in your thoughts and prayers!

Craig

Surgery Time Tomorrow

Hi!

Just a quick note to let you all know that my surgery time tomorrow is 7:30am.  Craig and I need to be there at 5am.  I believe that the surgery will take about 4 hours.  Prayers are appreciated!

Katie

I Feel Your Prayers

I just want you to know that feel your prayers. I know that a lot of you are praying for me. Many people have added me to their prayer chains. So many people that don't even know personally are praying for me.

And I feel it. And I thank you.

I believe that God wants good things for us. I believe that God cares deeply about me. I believe that God's presence is with me. I don't know that God will heal me miraculously, but I do believe that God is with me each step of the journey. I consider my doctors, modern medicine, and support from loved ones all as a gift from God.  In a lot of ways, they are my answers to prayer when all I can manage to form in my brain is' "Help."

I have been asking for strength and peace. And I feel those things most of the time. Thank you for praying those things with me.  Thank you for holding me in your hearts and prayers.

I leave you now with a quote from one of my favorite authors. It is one of the truest things I have ever read about prayer. The writer is Anne Lamott. If you haven't read anything by her, drop everything you are doing, go to the nearest library, and check out Traveling Mercies. Stat. If you have read one of her books, you can rest easy, eat a cookie, and read the quote below. It is from her book, Help, Thanks, Wow: Three Essential Prayers.

"So prayer is our sometimes real selves trying to communicate with the Real, with Truth, with the Light. It is us reaching out to be heard, hoping to be found by a light and warmth in the world, instead of darkness and cold. Even mushrooms respond to light - I suppose they blink their mushroomy eyes, like the rest of us.

Light reveals us to ourselves, which is not always so great if you find yourself in a big disgusting mess, possibly of your own creation. But like sunflowers we turn toward light. Light warms, and in most cases it draws us to itself. And in this light, we can see beyond our modest receptors, to what is way beyond us, and deep inside." -Anne Lamott

Ways to Help

Hi Loved Ones,

Many of you have been asking if there is any way that you can help us as we go through this process.  Any takers for the following tasks?

Go to my doctors appointments for me.
Make daily phone calls to doctors/insurance.
Go ahead and do the mental processing about what it is like to have cancer.
Have a bilateral mastectomy. What?!  No takers? 

Actually, if I know all of you, you would willingly take those burdens from me in a heartbeat. However, honestly, much of this is just something that we have to get through. Thankfully, we have A LOT of support as we go through it.

Although much of this is on us, Craig and I have brainstormed about practical things that others can do for us that would be helpful.  Below is a list of the few things that we thought of.

1. Emotional Support
If you think of us, feel free to send us a card, an email, or a text of support.  Many of you have been doing this already, and our apartment is covered in awesome cards.  As I am a lover of cards and handwritten notes, this has been a great reminder of support as we go throughout this process.  Feel free to send one to Craig one too.  He has been hanging in there like a champ and doesn't get any of the fun fame of being a cancer patient.

Our new address in Edinboro is:
411 Waterford St. #110
Edinboro, PA 16412

2. Meals in Pittsburgh
Some people are able to love best through food.  If you are one of those people and you live in or around the Pittsburgh area, you can make a meal for us to have in our freezer for my recovery.  My sister, Natalie, has set up a MealBaby account, has offered to be the reception site for the meals, and will make sure that the meals get to our freezer in Edinboro.  You can access that site and sign up here. There will be 2 drop off times, one on Friday the 22nd, and one two weeks later.  The drop off location will be Natalie's house in Pittsburgh, and the address is listed on MealBaby.

3. Help with Financial Costs
Please know that Craig and I have never been in a position to help someone financially in any great way.  If you are in that position, I get that and respect that. Just send us a card. If you have $5, $10, or $20 to give, it would help pay for a copay, parking in a parking garage, driving to Pittsburgh for appointments, etc.. Natalie is also spearheading a GiveForward fundraising account to raise money to cover costs.  You can visit that site here. The total cost to be raised is listed on the site and it is our best estimate.  Right now that amount will cover three items: Medical costs not cover by insurance (copays, deductibles, coinsurance), transportation to/from Pittsburgh for treatment over the next couple of months, and money to pay for some bills in the absence of my lost wages (more on that below). We will adjust the amount if it goes up or down.  If for some reason people donate more than we need, we will happily donate any extra money to a good cause.  We are not trying to make money off of this :)  Also, if you would prefer to send us a check instead of going through the site, you can do that and we will deduct it from the amount we are asking for.



So those are the 3 practical things that we have thought of so far.  Other than that, just keep doing what you are doing!  Craig and I have been overwhelmed by how much we need and how much people have stepped in to meet those individual needs with what they have to offer. It is a beautiful thing.  I pray that I can receive well and give well in my life.

Good news related to work/expenses! Penn State Behrend employees are awesome and have banded together to donate 17 vacation days to me so far! That is almost 3 1/2 weeks!  This is EXTREMELY helpful for the 4-6 weeks that I will be out of work after my surgery.  This limits the amount of lost wages and financial burden.  Plus, it makes me feel really supported at work and great about being a Penn State Behrend employee.  I feel super thankful and awed by this. If you are one of those employees who donated a vacation day, I will never know who you are individually, but thank you.

Prayers for my surgery next Friday!
Katie

Biopsy Results and Surgery Decisions

Hi all,

We were in Pittsburgh this past Tuesday for an MRI-biopsy and an appointment with the plastic surgeon. First was the MRI. Let me be honest, the MRI-guided biopsy is not a fun procedure.  It is actually quite difficult to go through.  The good news is that I got through it and do not have to go through one in the foreseeable future!  The reason that I had it done was that there was an area in the right breast that showed up in a previous MRI as "possibly concerning."  So they used MRI imaging to locate the spot and then take a sample.  Surprising to me, I had a small audience of medical staff as this is apparently a unique procedure. So that was weird.  But there is something about breast cancer that helps you get over any sort of modesty in medical settings. The head of the radiology department at AGH was supervising the procedure and he took good care of Craig and me at the appointment.  He said that he has been following my case from the beginning and has taken special interest in it since he has two daughters.  If that means I get extra good care, then so be it!

It took 48 hours to get the results of the biopsy from the lab, and they called me on Thursday morning with the results.  Guess what? BENIGN!  Woohoo!  From what we can tell at this point, there is no cancer in the right breast.  This is great news.

Although there is no cancer in the right breast, I have made the personal decision to do a bilateral mastectomy regardless.  This is a decision that I feel confident with.  I made the decision to possibly avoid hormone therapy,for preventative reasons, and for aesthetic reasons (think: symmetry).  I feel thankful that I even get to make this decision and the decision wasn't made for me with the biopsy results.

Our other appointment on Tuesday was with the plastic surgeon, Dr. White.  That went really well.  We were just touching base before the surgery date about the reconstruction. We were able to ask all of our questions, and Dr. White is very patient to answer all of them fully.

My surgery is in less than 2 weeks.  It is starting to feel real.  Thinking about it is sobering.  I am thankful that the time of waiting is coming to a close, but I am also starting to think about the difficulties of having such a major surgery. Continue to pray for strength and peace.

I will write soon about a few ideas that Craig and I have come up with of things people might be able to support us.  In the meantime, just keep doing what you are doing!

Results from Genetics

We got the results back from genetic testing this week and the results are good! 


I do not have any of the genetic gene mutations that they were testing for.  Woohoo! They were mostly testing for the BRCA-1 and BRCA-2 genes.  You may have heard of them in the news (Angelina Jolie...).  They were also testing for a few other gene mutations.  The idea behind these gene mutations is that there are certain genes that basically don't do their job in fighting cancer, and we were finding out if that is a missing link in my DNA. 


I have cancer anyway, but the reason that this is such good news is that if I had the gene, it would be something that my siblings could possibly have and my children could inherit.  My family members would have had to have testing. Now, it is as simple as my sisters getting mammograms every year for screening. The gene mutation also would have meant that I would have had a higher chance of getting other cancers in my lifetime, like ovarian cancer. So it is great that I don't have that.  I have no greater risk of getting ovarian cancer than the next 27 year old.


Then why did I get cancer?  We will never know.  It seems as though their is a slight genetic predisposition because my maternal grandmother had breast cancer post-menopause.  However, the main cause is something that we will never know.  And I am okay with that answer.  I would prefer the unknown over the genetic mutation. Overall, it is good to have some good news in the midst of this!

My Fancy New Job

I wanted to give a quick update about my new job, since I know this is something that many of you have been wondering about.  Many of you walked through the long journey to find a job in higher education. And many of you celebrated with me when I got the job offer in early June to be a Career Counselor at Penn State Behrend (Erie)! It was such a relief as there were aspects of my previous job that were really taking a toll on my physical and mental health.  Phew!




Even before I started, I set up a time to meet with my supervisor because I wanted to inform her of my diagnosis and that I would be needing 4-6 weeks off after surgery. I came to this decision because I wanted to give her a head's up that I would need time off, and I wanted her to have all of the information about me.  I realized that I could do very little in regards to how she reacted, so I might as well get it over with.  I was very nervous about this conversation.




Well, as many of you know, she reacted in the best possible way.  She was amazingly supportive, consoling, and reassuring.  She had someone very close to her that had been diagnosed at a young age with breast cancer, so she had personal experience with the complexity of this.  She also is just an amazingly supportive individual.  I cried with relief when I left her office.  She had given me exactly the kind of support that I needed from a boss.  She had reassured me that they would support me through this whole process, that I could take off as much time as I needed, and that my job would be here when I returned.  Wow.  Thank you.




Craig and I moved up to Edinboro, PA in early July and I started my job here at Penn State on July 14th.  I was eager to start, and my coworkers were so sweet.  They showed me to my (big!) office and within 10 minutes they had my name on the door.  They even gave me a cubbie in the bathroom to keep personal belongings!  My coworkers trickled into my office to introduce themselves.  Overall, the feel of the office is supportive, healthy, student-focused, and hard-working. I told the rest of my coworkers during our staff meeting that Friday morning.  It was difficult to share, not because I didn't want them to know, but because I feel the weight of it whenever I share it for the first time.  I recognize that it is a little traumatizing to hear someone tell you that they have cancer, and the images that flood your mind are horrible.  Although it was difficult to share, they were very supportive, and I have not doubt that they will continue to support me through this process.  They have given me the freedom to take time off for ANY appointments that I have coming up.  Some will check in with me occasionally to get updates.  Overall, the word I would use to describe this office is supportive. What a gift.


Starting a new job is like being in a foreign country.  Simple tasks take twice as long, you trying to figure out the nuances of the culture so you don't make a fool of yourself, and the most important thing is knowing where the bathroom is. Check. Check. Check. While I am tired at the end of the day, there are aspects of starting this job that are different from any other job I have started.  I realized that this is my first job where I have done something very similar before.  Since I was at CMU as an intern in their career office, I have done many of the tasks that I do here.  It is so much easier to adjust when the learning curve isn't crazy steep!  While I am a girl that loves a challenge, as displayed by my past job choices, at this point in my life I can appreciate a little more sanity on the job front.


Overall, I am really happy with my job and think that it is a great fit.  I feel very thankful for it.  It was a difficult process to get here, and I know that a lot of things fell into place for the job and me to match up.  I feel settled in this career move.  I feel excited about all that I will do and learn.  I feel hopeful that I will ground myself more as a counselor.  And I feel thankful for the livability that this job offers.  One of the best parts about this job?  My sanity! 


Finally, I would like to add that I do miss aspects of my previous job.  I miss some of the kids that I was working closely with in therapy, and I miss a few really great coworkers (you know who you are, EHS!).  I can say confidently, though, that this job is a good fit for me at this point in my life.  For a lot of reasons.  And I am thankful.