A letter to a newly diagnosed breast cancer survivor

Some friends at Cure Forward challenged me to write a letter with advice and encouragement for a newly diagnosed breast cancer patient, which I thought would be interesting and potentially helpful, so here it is...

 

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Dear newly diagnosed breast cancer survivor,

 

Did you know you are a survivor already? You are. From the moment you are diagnosed you’re a survivor and you will be for the rest of your life.

 

Here I sit, almost three years since I heard the worst words of my life, “you have cancer.” And thinking about those words still guts me. But honestly, that was the worst part, at least emotionally. Every day and week since then has been better. So if you’re in the lows of post-diagnosis, know that it WILL get better. 

 

When I heard those words I believed I was already one foot in the grave. I had no ability to imagine that I would be here three years later. But my advice is that even if you can’t imagine it, try to. And if you can’t, let others imagine your brighter, longer days ahead.

 

Medically, I encourage you understand all you can about your breast cancer. Not all are created equal. Understand your hormone receptor status, your stage, grade, lymph node involvement, and even onco-type. I didn’t have the opportunity to understand every specific of my cancer or information about clinical trials, because everything moved so fast post-diagnosis. But understating a bit about precision medicine, novel treatment options, and looking into companies that specialize in it, like Cure Forward, could help you a lot.

 

However, in understanding more about your breast cancer, stay away from of Dr. Google. He’s an evil doctor and he will only scare you. Get the facts you need (which can sometimes involve the internet), and they stay away from Google searches. The sad stories, message boards, and news stories will not help you. Remember, healthy people aren’t on the cancer chat boards. They are off living their lives. 

 

I also encourage you to get second opinion. I was diagnosed at one hospital, then got a second opinion another, and decided to do my treatment there. Call any friends you have in the medical field that can help you get a second opinion at another hospital. Sadly, not all oncologists, hospitals, and treatment plans are created equal.

 

Once you know all there is to know and you’ve sought medical opinions, then don’t hesitate to act. Get started on chemo or surgery ASAP. And push your doctors to get you started quickly. I feel like that was one of my keys to success. From my ultrasound/preliminary diagnosis to sitting in a chemo chair to get AC #1 it was 11 days. Time is of the essence, and don’t dilly dally thinking about not doing all the treatment your doctors recommend. You have to trust your doctors. So find one you love and trust them.

 

In case you want to know what the road ahead looks like, here are the three worst things (in my experience) about breast cancer treatment and survivorship:

1. Growing your hair back after chemo. I didn’t mind shaving my head when I started to lose it. I was in the zone of “this is what I have to do, and I’m a badass”. I didn’t mind wearing wigs – hey, sure made for an easy morning routine. But I absolutely hated the first six months after treatment when my hair was so short. I thought I looked unfeminine, like some kind of butch lesbian. I didn’t want short brown hair. I couldn’t wait for time to pass and my hair to be back in at least a “bob” style.  
2. A double mastectomy and tissue expanders. Not going to lie, a double mastectomy and the tissue expansions that I had to do quickly afterwards, is the worst pain I’ve experienced in my life. And I have a pretty high pain tolerance.  Oh, and that pain went on for ~6 weeks. It’s worse than any broken bone I’ve had (heck, I had a broken rib for 2 weeks and didn’t realize it!) and its way worse than childbirth. Remember, it’s terrible, but you’ll get through it and then it will be over.
3. That when treatment, ends the fear and trauma does not. Every cough you get, every ache or pain you have, every headache, everything leads to fear that it’s the cancer, back as stage IV. And this lasts for years, maybe even a lifetime. Faith in God and the passage of time has helped me cope, as well as trying to live life to its fullest, because no one really knows the number of days they have left. There is no “putting cancer behind you.” If you’re lucky, the worst will be behind you, but it will always be a part of you.

 

My heart goes out to you, the newly diagnosed survivor, because like I said at the beginning of my letter, it many ways the first days are the worst part. The heartache of hearing that you have cancer and the ambiguity of life after those words, is a pain that I wouldn’t wish on my (hypothetical) worst enemy. But you’ll get through this, and you will emerge stronger. Keep the faith.


Hugs and prayers,

Kirsten

 

Yes, They're Fake, The Real Ones Tried to Kill Me

Last week on Thursday I had my breast reconstruction surgery!

It was a three hour surgery that consisted of removing my temporary expander implants and replacing them with permanent silicone implants. Then my plastic surgeon harvested some fat from my thighs to put around the implants to fill in gaps and make my breasts look my natural since I have zero breast tissue after the double mastectomy.

The surgery went really well and my recovery is coming slowly but surely. My chest is super sore and tight but already looks a lot better than before the reconstruction. My thighs where they harvested the fat are so bruised and sore but already feeling less sore. My plastic surgeon and his team are the best, and our family friend who's was my anesthesiologist again did a great job.

I've had the last few days off work and hope to return to work in a couple of days. I'm not allowed to lift anything over 10 lbs for four weeks, which means no picking up Elise, which has been emotionally tough already. Luckily I have great help lined up for Elise. I am so thankful for my family and friends.

I hate feeling pained and helpless again but hopefully this is my last surgery and the pain is not near as bad as the mastectomy and I survived that.

I think when all is said and done I need to get this shirt...

Love.

Surgery, recovery, surgery

I realized I never posted about how the actual surgery went besides being declared cancer free! So I'll post about that and how recovery is going now.

My actual surgery was great. I had the dream team of my breast surgeon, plastic surgeon, anesthesiologist (who's a great friend of the family), and nurses. One of my nurses was actually a good friend of mine's mom! They all did a phenomenal job. They told my family that my surgery was routine and textbook. 

Then I recovered in Scripps hospital for 2 nights. The nurses there were super sweet and took great care of me. Since then I've been recovering at home and my parents house near mine. It's hard because my arms are super immobile and I just feel uncomfortable a lot. I can't do anything for Elise since I'm not allowed to lift anything over 10 lbs for 4 weeks. So Jon and my parents have been doing a great job keeping her happy and healthy. 

All was going pretty well until this Wednesday when I had a hematoma (broken blood vessel) pop up out of nowhere on my upper left chest. I went straight to my plastic surgeon's office and he decided it needed surgery. So later that day I was back in the OR under anesthesia (our awesome anesthesiologist friend did it again). After 30 mins they found the bleeder, fixed it, and I was back in recovery. Now I'm feeling ok minus a lot of soreness on my left side and the stupid surgical drain that I have on that side still (my right drain is out!). 

And since everyone asks me about reconstruction, so here is the deal... When you have a mastectomy you have zero breast tissue left, so they can't just put an implant on your chest like a boob job since there is nothing to hold it. So during my mastectomy the plastic surgeon put expanders behind my chest muscles. Now over several weeks he will slowly fill those expanders until I start radiation. Then several months after radiation he will replace the expanders with silicon in another surgery. So it's a long process. 

I'm a Survivor

Today, I received the amazing news that I am cancer free!

In fact, I was cancer free before surgery because I had a what's called a "complete response" to chemotherapy. The chemo killed all the cancer in my breast and lymph node. Not one cell remained! We are just ecstatic. 

My surgeon called it a medical miracle. I called it a giant answer to prayer. This is exactly what I prayed for again and again over the last 5 months. And many, many others prayed for that as well. Thank you prayer warriors. God is faithful.

My surgeon removed 4 lymph nodes. 1 showed evidence of "dead cancer" (i.e. scar tissue) and the other 3 showed no cancer at all. This is another huge answer to prayer because I didn't want to have many lymph nodes removed because that puts you at more risk of lymphadema.

The original breast tumor was just scar tissue. Amazing! I could not be happier. 

So, no more "bump" because we have Elise and no more "lump" because the lump was killed by chemo and then chopped off. I guess I should change my blog name! 

Surgery Tomorrow

Early tomorrow morning I head into surgery for my double mastectomy.

I have such mixed emotions as I head into surgery. I'm relieved the day is finally here and I can be one big step closer to beating this cancer. I'm nervous about the pain and the limitations during my recovery. I'm hopeful that the pathology report will show little to no cancer left. And I'm scared to death the pathology report will show that 5 months of chemo didn't really work and I'm basically out of options.

Obviously I so appreciate your prayers for a great surgery tomorrow. But I really covet your prayers for August 8 when I get the pathology report. It just has to show that the chemo worked and that very little cancer is left. I just keep praying and praying it will be good and God will show his glory through me beating this cancer. But even if the pathology report is bad, I vow to keep fighting. I won't let that crush my spirit or my resolve.

Also, just a quick update on my last post. Elise's kidney ultrasound was good. It showed a very minor issue with her right kidney that will very likely resolve as she grows. We just have to do a follow up x-ray next month to give us the info we need to find the best course of action to prevent future UTIs. Most importantly our pediatrician assured us that Elise is going to be just fine no matter what. Thank you for the prayers for her.

"My shirt says I'm a sweetheart but I'm a tough cookie like my mom!"

Surgery Preparation

Today I had my pre-op appointment for my double mastectomy with my plastic surgeon. Note: I never thought I'd use the phrase, "my plastic surgeon" in my life. They went over all the dos and don'ts for before and after surgery.

Basically it sounds like the worst part of the recovery will be the first ~1 week or so when I'm in a lot of pain and then I'm just going to be more uncomfortable than in a ton of pain. Oh annd I'm not allowed allowed to lift anything over 10 lbs for 4 weeks. Which means my Mom, Dad, and Husband will be doing a lot of Elise duty for the month of August.

I've also stocked on my post-op items that I've heard were helpful from other survivors.

A wedge pillow for sleeping

Breast surgery comfort pillows for sitting and resting my arms

Drain holding pockets for the surgical drains (yuck)

A bunch of front button-up sleep and casual shirts


And finally, I'm doing a few fun things to enjoy my last days before surgery.

Unfortunately, our 5-year wedding anniversary is right after my surgery. So before surgery Jonathan and I are doing a little getaway to a resort in Indian Wells, CA without Elise to celebrate our marriage.

Also, I'm doing a fun girls night out party at a local brewery that I'm calling "Ta Ta to my Ta-Tas."  More details about it later.

Surgery is August 6th. If you're a prayer warrior please send up some prayers for me that day and the days around it. I've listed some specific prayer requests here. God hears our prayers.

Surgery Scheduled & Prayers Requested

Last week we met with my surgical oncologist and scheduled my surgery. 

I'll be having a double mastectomy on August 6.

(Hey, if it's good enough for Angelia Jolie, it's good enough for me! Kidding.)

During the mastectomy my surgeon will remove all of the breast tissue from both breasts as well as few lymph nodes from my left arm pit (where they know there were cancerous cells at one point). A pathologist will then analyze all of that tissue to find out how much cancer remains. My big big prayer is that zero live cancer cells will be found when they do the pathology report after the mastectomy. I'd appreciate any prayers you can give me for that as well.

I'm not that scared about the surgery itself. I know it's the best choice I can make to increase the odds that I'll be here for Jonathan and Elise for a long time. I know I'm tough and can handle the pain. But I am a little scared to get those pathology results. If there is no remaining cancer my prognosis is very good. If there is a lot of cancer left, my prognosis is pretty bad. So the results of this surgery really is the "moment of truth" after months of treatment. It will also determine what scans and treatment I should do next.

Also because they have to remove some of my lymph nodes, I'm at increased risk for lymphedema (permanent arm swelling). So, please pray that my surgeon will not have to remove many lymph nodes and that I will not get lymphedema.

As far as "looks" go... I'll be doing temporary breast reconstruction at the time of surgery and then a permanent reconstruction about 8 months later. I have a wonderful plastic surgeon who assures me I can have "great" results when all is said and done. But please don't call this a "free boob job" -- unlike a boob job, reconstruction after mastectomy requires two lengthy surgeries as well expanding the pectoral muscle over several procedures so the implant has someplace to go. Basically it's painful, lengthy, and not that fun. Oh yeah, and I had to have cancer to get it.


So there you go. Surgery is in six weeks. Thank you for your prayers.