Three years ago today. Three years ago, I first discovered my lump. I recently shared my story with Tanya West of Go With West and she is featuring it on her blog. You can find it here: http://www.tanyawest.ca/survival-stories/Katie-leadbetter/
So someone you care about just got diagnosed with Cancer. There are a LOT of emotions going on, most of them shitty ones. It’s a rough time. Really effing rough. Some people don’t know what to say or do, so they don’t do anything. Other folks, are there in an instant, offering ALL THE HELP. Others want to help, but just don’t know what to do. There is no “right” way to react. But you can be assured that if you act from the heart and it will mean something to your loved one.
- If they ask for help of some kind and you can be of assistance, do it. Folks going through Cancer treatment need rides, company, meals, distractions, and hope. Shortly after my diagnosis and meeting with my surgeon, my friend Kevin said, “What do you need from us?” My answer was that I didn’t want to feel alone. Cancer treatment is a very lonely thing because ultimately you have to endure this all by yourself. I wanted to avoid that feeling as much as possible, so I asked for walking buddies, visitors, and distractions. TeamKLB came through for me in a MILLION different ways.
- Calls, texts, cards, flowers, emails. The amount of people that were checking in on me really helped to pull me through emotionally. “Grief shared is halfed. Joy shared is doubled.” There is no truer quote for me. Because I shared my story so openly, a weight was lifted off of me. Check in on your loved one and allow them to share their feelings with you. This is not about how uncomfortable this may feel for you, this is about being there for your loved one.
- If your love language is Acts of Service (as mine is), here were my favorite acts of service: homemade healthy meals, helping me put Christmas away, cleaning my house, delivering food (usually Jamba Juice), and being a walking buddy.
- If your love language is Gifts, here are my favorite gifts: Whole Foods gift cards, Nordstrom square silk scarves (for those that lose their hair), a lightweight sleeping cap (again for those that lose their hair), cozy blankets/socks/sweaters, breast cancer jewelry, book gift cards, iTunes gift cards, and boredom boxes with puzzles and the like. I got quite a few handmade gifts, which to me, fall under both Gifts and Acts of Service, and these were my most favorite: a watercolor of me, a cross stitch saying TeamKLB, and a hand carved wooden ribbon.
- Help your loved one get in contact with a Cancer support center. For me, Bay Area Cancer Connections was an integral component of my healing. They had tons of resources, as I’m sure other Cancer support centers do as well.
It saddens me that I need a post like this on my blog. My journey began in 2014 and I have been asked this question too many times already. I wish you the best, I wish your loved one the best, and I wish for a world without Cancer.
I’ll leave you with a quote.
“Having a complete meltdown IS handling your grief. Keeping it bottled up and deep inside you and not going into it is called avoiding your grief. It’s like standing in waves at the sea shore. In the beginning there are lots of rollers, they come very fast, they knock you all over the place. Down the road they come more slowly, but they never stop coming completely. And every so often there is just a killer wave that knocks you down, takes you under, flips you down and up and down, until all you can do is hope that very soon you will pop into the air and be able to catch a breath. YOU don’t handle the waves, the WAVES handle you. Give yourself as much time and space as you need. The less you fight the waves, the sooner you pop up into the air again.”
Hugs and Health <3,
Let me back right up to where it all began…
Before I was diagnosed with Breast Cancer I had noticed that almost every time I ate, my nose would run. It didn’t matter what foods I ate, whether I was eating on the go, or whether it was spicy or not. Most meals made my nose run. I had even commented on this to Jim. I assumed this was some type of additional food intolerance.
During my time going to Bauman College (my in person classes, before I switched to distance learning), we learned about histamine and that got me thinking that this must be related to some issue with histamine. That stuck with me, but then I was diagnosed with breast cancer, so many other things got put on the back burner.
Fast forward to early 2016. At that time I had been completely done with all cancer treatments for about a year and had my last surgery in Oct. 2015. I kept waiting to get my energy back, to not have to drag myself out of bed every morning, to feel like myself. I know my body well enough to know that there was something else going on. At that time, I just didn’t know what or who to ask. In mid spring of 2016, while on instagram, I found a post by a woman with the handle @thelowhistaminechef (she has since changed her handle and can be found at Healing Histamine.) Coupling my low energy with my runny rose, I thought, THIS must be what I need to learn more about. THIS is what I have. And to top it off, she was going to be a Paleo F(x) in May. I had to go see her talk.
At Paleo F(x), she did a food demo. After the food demo, she answered some questions about her experience. (A great story, by the way, I highly recommend checking out her page). After going into anaphylactic shock while reporting for CNN in war zones, she consulted a naturopathic doctor. This eventually lead her to a diagnosis of Mast Cell Activation Syndrome (MCAS) and to a low histamine diet. She encouraged her listeners to reach out to an immunologist or a naturopathic doctor. When I came back home after the conference, I looked up MCAS and contacted my doctor for a referral to an immunologist. There are many symptoms of MCAS, but the ones that I noted were: gastrointestinal (intestinal discomfort), brain fog, headaches, migraines, general fatigue, being cold all the time, food and chemical sensitivities (including perfumes), and of course my respiratory symptoms.
I met with an immunologist just a couple of days after arriving home from Paleo F(x). Before going to the doctor appointment, Jim jokingly said, “they’re going to put you on the no food diet” since this was something I dealt with at nearly every meal. It was the most thorough doctor appointment that I have ever had with a doctor. I told her about what I thought I had and about my symptoms that aligned with MCAS. Then she went on to ask me about everything I had ever done. I told her about my my cancer diagnosis and treatment, my recurrent sinus infections, my digestive issues, chronic yeast infections, and a systemic yeast infection. I told her a story to illustrate my experiences. In Feb. of 2016, I got a common cold. That cold lasted for four weeks! And then I was well only for ONE WEEK before I started getting sick again. This is a common occurrence in my life. She then did a physical exam and told me that she didn’t believe I had MCAS because people that have it usually have skin lesions and I don’t have any of those. She did, however, suspect that there was probably something amiss with my IgA. She noted that the sinus symptoms and the bloating and digestive discomfort was like a red flag for low IgA. She asked me to have 11 vials of blood taken for testing and asked if I would get the pneumonia vaccine to help determine what I had. I decided to put off the vaccine until I knew I needed it.
Throughout the appointment I was able to convey to the doctor that I wasn’t looking for a prescription or a quick fix. I wanted to understand what is wrong with me and to do everything in my power to heal it on my own with holistic, natural, and diet/lifestyle based interventions. I know my body and I know when things are “common, but not normal” (refer to this post for more…) and when there is truly something amiss. She was awesome. She was so impressed that I knew my body so well and that I listened to it. She also understood that as a holistic nutrition consultant, I practiced what I preached.
After two separate blood draws (I pass out folks!) I went back to learn about my results. Here they are:
IgA <6 mg/dL Normal range: 87-474 mg/dL
IgG 343 mg/dL Normal range: 681-1648 mg/dL
IgM 26 mg/dL Normal range: 48 – 312 mg/dL
IgE <2 kU/L Normal range: <114 kU/L
Please note those normal ranges come directly from the test results. As you can see, they are all very low, but my IgA and IgE were the lowest. Based on these test results and the fact that most of the other test results came back “normal”, she believes that I have Common Variable Immune Deficiency (CVID). However, she could not diagnose me without first giving me the pneumonia vaccine. To be able to diagnose, she had to prove that my body did not respond to the polysaccharides in the vaccine. So reluctantly I got the vaccine. Six weeks later I had my blood taken again to see if I had any presence of antibodies. When looking at the test results, side by side, you can see there are virtually no differences. To my body, it’s like I wasn’t even vaccinated, I have no antibodies built up to the pneumonia virus. So on August 4th, I was officially diagnosed with CVID.
Here’s an FAQ:
Q: What are the treatment options?
A: There are three main treatment options:
- Prophylactic antibiotics. Basically a prevention in case I get sick. Just in case. This option is not for me. I’m anti prophylactic antibiotics. See this post for more on why….
- Immunoglobulin infusions. The immunoglobulins come from healthy blood donations. They are then processed so that it’s just the immunoglobulins, not all of the blood. It is actually a clear liquid.
- Every four weeks, for about 4-5 hours at the infusion center at the medical center. Indefinitely.
- Weekly, for about two hours at home. These infusions are subcutaneous (under the skin in the abdomen region.) I would give the infusion to myself. Also indefinite.
The advantage of doing weekly infusions are: you don’t have to sit at the infusion center for 5 effing hours every month! and that your IG levels stay more stable rather than spikes and dips with monthly infusions. The disadvantage is that you have to do this each week and you have to do it yourself. Ick.
Q: How did you get this? Is it related to cancer?
A: I was born with it. The doc believes I was born without IgA and IgE, and that the rest of my immunoglobulins are low because they have been working on overdrive to compensate. Most people do not get diagnosed until they are in their 30’s or 40’s. It does not have anything to do with my having had cancer. However, a compromised immune system is more at risk for cancer. Think of it this way: the immune system is like an army. My immune system doesn’t have very many soldiers (very low IgA and IgE) and the soldiers it does have are busy fighting small battles (low IgM and IgG). So when a big battle (cancer) comes along, it can only do so much to fight the cancer.
Q: What are the infusions like?
A: They are mostly long, boring, and uneventful. Except for the first one.
I remember my doctor mentioning something to me about the fact that because I don’t make IgA, I could have antibodies built up to it. This means that I could go into anaphylactic shock. That’s where I remember the conversation ending, which left me concerned. So before I would let them give me anything, I asked how they test, prevent, or treat for this. The standard protocol is to treat with premeds (antihistamine, hydrocortisone, and Tylenol) and then to ramp up slowly. For the first half hour, the dose is very low, and every half hour they increase the dose. They also have additional meds (Benadryl) if needed. Once I felt that I understood their plan, I consented. Initially, I noticed nothing. But after the first half an hour, when they increase the dose, I noticed feeling a little flushed. Then I noticed that near the IV site, my arm felt kind of tingly. A little bit itchy, but mostly like someone had put icy hot on my arm. I told the nurses and they decided that they should flush my IV with saline. Then they gave me Benadryl and more hydrocortisone and restarted IV. My arm was still tingly and so they slowed infusion down. This did not seem to help. The doctors and nurses came to check on me and it was decided that since it was only near the IV site, and not all over my body, it was probably not an allergic reaction. We continued the infusion. Afterwards, I had a bit of a headache and felt tired from the Benadryl. The nurse emailed me the next day to say that she had talked with my doctor and that the tingly feeling was normal. The second infusion went much smoother, but I still had the tingly sensation.
Q: What differences will you notice?
A: The doctor said that is likely that I will notice feeling less tired. She didn’t seem to think But many of my other symptoms would go away. I should also get sick less often and be able to have and more robust immune system. So far I haven’t noticed much. My levels were so low that it could take a while to rebuild them to normal.
Q: You’re doing all of this for a runny nose?
A: No. It’s much more than that. It’s giving myself an immune system that actually functions. It’s preventing cancer reoccurrences. It’s regaining energy. It’s preventing a lot of hospital visits due to “non-serious” illnesses. The runny nose was my catalyst for seeking out medical help for a much bigger problem.
Q: What are the risks associated with CVID?
A: Getting sick, a lot. Many people with CVID end up getting very sick from things like pneumonia. Or are just chronically sick.
Here is a link to learn more about CVID.
Thanks for reading this, it was a lengthy one!
As this is the week of hereditary breast and ovarian cancer and September being Ovarian Cancer month and October being Breast Cancer month, I though I would take this opportunity to share my thoughts and feelings on everything turning pink. But first a little background.
About 10 years ago, when the yellow livestrong bracelets came out were such a big thing, I jumped on the bandwagon. Shortly after I had the livestrong bracelet, I found a pink breast cancer bracelet too. I rocked my bracelets (and many other “cause” supporting bracelets). Then I must have stumbled upon a website that sold pink ribbon paraphernalia because I can remember buying many “pink ribbon” items, pajamas that were so cute with ribbons all over them, a purse to support breast cancer awareness from Vera Bradley, and more. At some point I stopped buying all those things and I stopped donating at Safeway and the like during Pinktober. I also stopped feeling guilty for not making donations toward breast cancer awareness. I thought, “Pinktober is everywhere, there’s not much need for breast cancer awareness.” I still stand by that decision today. There isn’t a need to spread “awareness” in America. There IS a need for breast cancer education (especially in middle and high schools) and for breast cancer research. Those are still quite worthy causes to donate money to. And places like Bay Area Cancer Connections which provide support, resources, and education are amazing. Sometimes I think we all (myself included) get caught up and think we’re doing something great, when in actuality, the money isn’t going where we thought it would.
Besides the money not going to its intended home, many of the companies that make these pink products are actually companies whose products are known carcinogens (does that make your head spin, like mine?!?!). Companies like KFC with their pink buckets o fried chicken and a fracking company that has made their drill bits pink. Here’s a great article about pinktober.
My final two cents: if you want to make a donation for breast cancer, chose somewhere that 1) does research to help improve treatment options and survivorship, or 2) supports those in treatment, or 3) educates people on early detection and treatment information.
Surgery update: Surgery is still scheduled for next Wednesday Oct. 7th, but it has been moved up to 9:30am. Luckily it was moved from 12:30pm to 9:30am and not pushed back later. I would have had a FIT! Fasting for 12 1/2 hours is brutal for me! I think 9:30 will be more manageable. My plastic surgeon has no concerns and even said this is an outpatient surgery. He ordered me 3 different pairs of implants. These are “gummy bear” or solid silicon implants (think jello instead of honey). I currently have 500 ccs of saline in my expanders. He ordered different sized pairs from 550 ccs to 650 ccs. While I’m under, he will “try” the implants on me and sit me up and my OR team will decide which ones “look best”. This whole scenario literally blows my mind, I kind of wish they would film it and I could watch afterwards, because I really want to know how they decide which ones look best on me. Shouldn’t my best friend and my husband get to make those decisions? It’s so bizarre that I can’t help but laugh as I play the scenario out in my head. I will be so happy to have these expanders out. It’s very hard to describe what they feel like, but I think I’ve finally got it: large, smooth river rocks, trapped in a VERY well fitting sports bra. Sound comfy to you??? 😉 My plastic surgeon plans to move them inward a bit, make the height of both the same, and make them both the same sizes. I’m looking forward to checking out my new rack. And you can you! If you want to see them or touch them – just let me know. (all seriousness)
(Side note: I sort of feel like I should walk around without a shirt on in public to see if I’d get arrested for indecent exposure. I have no nipples, so I feel pretty safe about the idea, but then I can just see the headlines: TEACHER GETS ARRESTED FOR WALKING AROUND TOPLESS; SOURCES SAY SHE WONDERED IF SHE’D GET ARRESTED.) HAHAHAHA!
If you’re feeling up to it, wear some pink or your #teamklb shirt on my surgery day, next Wednesday, and send me the pic!
PS – I plan to throw a big “Katie Kicked Cancer’s Ass” party near my remission day to celebrate being in remission for one year and being done with chemo, surgeries, and radiation. Stayed tuned for an invite to a party in early December.
Hello there #teamklb,
It’s been a LONG time since my last post, but I thought it was time to fill you in on what’s been going on in my life lately.
Most of you know that I accepted a new position at work – I will be a Math TOSA (Teacher on Special Assignment). This means that I’ll be teaching teachers and coaching them with our new Common Core State Standards and our newly adopted math curriculum. School is now back in session, and this past Monday, while being introduced to about 350 teachers as the district’s new Math TOSA, it felt like quite a victory. One year ago I was scared to get the results back from my breast MRI and now here I am in a new position in the district. It felt like I had really won. I think of all that I’ve gone through and accomplished in the last 12 months, and it amazes me. I kicked cancer’s ass, went into remission, successfully completed radiation, went back to work, applied for and accepted the Math TOSA position, finished a bunch of nutrition classes, and started a new job. WOW. I’d like to thank Lori for taking a chance one me in this role. When I got home from the interview, I told Jim that I thought I totally bombed the interview. I had chemobrain on top of normal nervousness. When I was offered the position, Jim told me that even when I think I stink, I’m still pretty awesome. Thanks! <3
I spent most of my summer either packing up my classroom (sniffle, sniffle) or doing homework (LOTS OF HOMEWORK). I wanted to use my free time to get caught up and possibly “ahead”. Every month I basically have a 10-12 page paper to write. It’s getting easier now that I’m in the swing of things, but it still takes a ton of my time. I should be finished with my nutrition program in early spring 2016. YAY!
Most of you also know that we took a “Katie Kicked Cancer’s Ass” trip to Europe this past summer as well. My mom, Kamy, Jim, and I spent 2 1/2 weeks traveling through Italy and Mallorca. It was an amazing trip and it definitely scratched my traveling itch. It was hotter than hell, but we still had an amazing time. My favorites: 1) walking out of the Venice train station and seeing waterways and not roads, 2) eating padron peppers every chance I got in Mallorca, 3) Florence, everything Florence, especially the food, 4) the glass blowing in Murano and the lace making in Burano 5) checking out the castle in Alcudia and the lighthouse Cap de Formentor, and 6) Stand up paddle-boarding in Santa Ponsa.
During the summer, at some point it hit me that people treat me like I didn’t have cancer. Which is a double-edged sword. On one side, I want to move on and forget that I had cancer. That would be the ultimate sign of moving on with my life. I want to feel, look, and be normal again. On the other side, I’ll never be able to forget. My body is changed: I’m not a strong as I once was, I can’t do all the things I once did, and I still have plenty of scars. I also can’t take each day for granted like I once did. I’m also significantly more emotional than I ever was. It makes it hard to move on. I’m still trying to move on, but it’s going to take a while.
Jim and I were talking on our trip to the Central Coast and I said, “Sometimes I feel like I never had cancer because I almost forget”. We continued this conversation and I told him that I couldn’t really blame others for forgetting that I had cancer when sometimes even I forget it. I’m also glad to be at a point in this journey to be able to (even if just momentarily) forget that I had cancer.
During my monthly massage in June, my masseuse took hold of my right arm (the chemo infiltration arm that is STILL swollen over one year later) and said to me, that my arm was mad at me for damaging it. It was hurt. And I should apologize to it. Some of you might think this is crazy, but back when I was preparing for surgery, I read a book called Prepare For Surgery, Heal Faster. In it, she recommends that you make peace with the part of you that is being operated on. So, I started apologizing to my breasts for being mad at them (this may sound familiar, as I’ve blogged about it before). For several weeks leading up to the surgery, I had a strange pain in my breast, where the tumor was. After apologizing to them and thanking them for fighting off the cancer, etc., the pain went away and has never come back. So, I figured apologizing to my right arm for harming it, couldn’t hurt. And since I’ve been doing that each night, both my masseuse and I have noticed a difference in the arm. Call it what you will, but I’m convinced that it worked.
There’s a new(ish) song out called Fight Song by Rachel Platten and it’s become my “Katie kicked cancer’s ass” Anthem. I know this is true for many cancer survivors. Whenever I hear it playing, I basically burst into tears. I think about one year ago going through chemo and barely being able to walk or do very basic tasks and how just a few weeks ago I was able to run for the first time in about 20 months or that I was able to bike to bay and back (~15 miles). Last year I felt like death and now my life is so vibrant. When I take the time to stop to think about it about, I nearly always cry.
Confession time: Looking back, I’m really sure that I should have had a blood transfusion. During every chemo cycle, the week after chemo, I felt very much like I would pass out, but so long as I stayed home and in bed, I was good. Once I got the picc line in and had to go to the doctor every week to get it cleaned, during that appointment (only on the fist week of the new chemo cycle) I always almost passed out. Twice they kept me longer to give me additional fluids, but the other times I just toughed it out because I REALLY didn’t want a blood transfusion. I tried to avoid letting on just how bad I felt so that the nurses wouldn’t admit me. Oh well, too late now.
While on vacation, my left foot started hurting (I broke it 14 years ago and it has never hurt like this since the cast has been off). It was quite strange because it basically hurt exactly where I broke it. At first I thought nothing of it, but it hurt again a few days later. Then I remembered at one of my follow up appointments with my oncologist, he said when cancer returns, it often returns to the blood, brain, lungs, and bones. So I freaked out a little and emailed the doctors office to get an appointment with a podiatrist as soon as we got back. I asked for an exam and x-ray to provide me with some peace of mind. While I didn’t really think the cancer had returned in my foot, I did freak out for a second in the doctor’s office while waiting for him to come and review the x-rays. What if the cancer had returned? Could I go through chemo again? What would my chances be this time? LUCKILY, I’m still #cancerfreehappyklb.
Also, oddly enough, the radiated skin has been very irritated lately. It’s been on and off, but for several weeks now, it feels like it might look red and irritated, but it isn’t. It just hurts. It doesn’t hurt all the time, just every few days or so. I told my doctor and he had me come in just to take a look. The nurse said that sometimes people get shingles where the skin was radiated, but luckily that’s not the case with me. They just said that it was fine and to keep on applying aloe and the calendula cream.
In July, I had an appointment with my plastic surgeon to discuss surgery. I had a whole bunch of questions for him. Most of them are about the more vain aspects of my reconstruction (like, can you make them any bigger? one is higher than the other, can you fix this? can you lipo the “side fat” that I was left with post surgery? etc. – answer to all of those questions is yes btw). After the appointment, I felt incredibly excited to have the surgery. My first thought was that I was excited because during/after surgery nothing is expected of me. I don’t have to work, cook, clean, take care of anyone. It sounds weird, but it’s really nice. My friend Liz pointed out to me that maybe I was excited because this is my last big hurdle to jump through. She’s right. After this I’ll be pretty much done. Also, I think I’m excited to have these expanders out. They are really uncomfortable. This leads me to my last tidbit of info for you. My reconstructive surgery has been scheduled for Wednesday October 7th at 12:30pm. (that is going to kill me by the way – fasting for twelve and a half hours is pure torture for me). I will be taking two weeks off from work. I anticipate being in the hospital one night and feeling much better much sooner (this is the “easy” surgery). I’m sure I’ll be up for visitors during my time off and help with meals would again be appreciated.
I feel like I’ve unloaded a lot off my shoulders. Thanks for listening!
As always, much love you to #teamklb
I’ll leave you with something funny. In looking into nipple reconstruction, I’ve come across these “rub-on nipple tattoos” hehehehehehehe http://www.prweb.com/releases/2014/09/prweb12201139.htm
Hi Team KLB,
Tomorrow marks the first anniversary of the day my whole world changed. I’ve been reliving the emotions that I felt leading up to my biopsy and diagnosis. Lately, I’ve also been thinking about those first few days and weeks post diagnosis and remembering just how hard it was. As of now, I feel slightly numb to how hard it was to process things in the beginning. Sometimes I talk about having Cancer like it was a cold. While I know it was nothing like that, I’m so used to it now, that’s it’s just my new normal.
I kept thinking about this is when “my life got flipped-turned upside down” which is also a small part of the lyrics to the theme song for the “Fresh Prince of Bel Air”. So, to mark this Cancerversary, I rewrote the lyrics to fresh prince to reflect how cancer “flipped-turned upside down” my life (with the help of my favorite musician :).
Here are my new song lyrics:
Queen of Team KLB
Now this is a story all about how
My life got flipped-turned up side down
And I’d like to take a minute
Just listen and see
I’ll tell you how I became Queen of Team KLB
In Silicon Valley, born and raised
In the classroom was where I spent most of my days,
Schoolin’ out, gradin’, teaching all cool,
Playin’ bralyball outside of school.
When a couple of lumps that were up to good,
started making trouble in my neighborhood.
I had one little test and my family got scared,
Dr. said, “You’ve got cancer, but let’s kick it out of here!”
Went through Chemo, lost all of my hair
Felt really weak, didn’t like lookin’ in the mirror
Doctors said, “tumor’s shrinkin’, yo’ almost there!”
And in end, I would say I was a survivor!
I pulled through surgery and by December 8,
I was remission, I told the cancer “see ya later!”
I looked at my life, CANCER FREE,
I put on my cape as Queen of Team KLB.
I hope you were able to sing along in your head and that you enjoyed it!
My hair is growing back and while I’m glad I have it and I’ll take this over no hair ANYDAY, I really hate it. Everyone says, “you’re hair looks great” or “I really love it” and one friend even said that I looked more beautiful with short hair because hair would just take away from the beauty of my face. (While that was a wonderful compliment, I used to have hair for the previous 30 years of my life and I never felt that way.) It’s not that I don’t appreciate the compliments, I truly do appreciate them, but I hate my hair the way it is and I am anxiously waiting for it to return to a more normal length and style. My hair is still my scarlet letter (as far as I’m concerned). It tells me and the world (but mostly me) every morning when I wake up “She had cancer”.
I’m still about three-four months out from my swap surgery. I’ll post more info about it after I talk with the plastic surgeon in July. I’ll be very happy to have real implants. I’ve heard that they are much more comfortable than my current expanders (because these are not comfortable – especially sleeping!).
Thanks for your continued love and support!
<3 Queen of Team KLB
Hi there #teamklb,
I have completed 24 of 25 days of radiation so far. I am 96% percent done and will finish tomorrow 3/16. I’m super excited to be finished with this final cancer killing step. First: poison, second: slash, and last: burn (thanks Lilani for that apt description). For the past week and a half, my skin has been IRRITATED. The physical radiation burn has my skin red and hot (no surprise there) and my underarm is really angry. No shaving for a little while, so I’ll be a bit stinky :-(.
My left breast (no cancer, no radiation in that breast) had a small red dot on it two weeks ago. I’m hyper vigilant now, so when it was still there the next morning, I called my plastic surgeon. They had me come in that day just to check. He said to me, “was it your bra?” I almost laughed. First, I don’t need to wear a bra, so why would I? For the first time in about 20 years I haven’t needed a bra, so I’m NOT wearing a bra. Second, I’m going through radiation and therefore I’m avoiding all things that would irritate my skin any further. Third, I would have thought of that, I’m not your average idiot patient. The plastic surgeon said it would be extremely unlikely for cancer to regrow in the skin of the non-cancer breast. He said to watch it and he would check on it during my regularly scheduled post radiation appointment at the end of the month. He asked for my surgeon to be available at that time as well in case they need to biopsy it (not an exciting prospect, as the initial biopsy was one of the more painful part of this whole cancer bullshit). He also suggested that I have my radiation oncologist look at it during our weekly appointment. He looked at it this week and thought it was nothing to be concerned about (it was almost gone by the time I saw him). So it appears it was just a skin lesion. Phew.
There was a woman in my Living Strong Living Well class that just recently lost her battle to lymphoma. On our first session we simply went around the room and introduced ourselves. I thought, I’m good, I’m not going to cry when say my name, my kind of cancer, and what I value about myself. I was good. Until Paulina spoke. She was fairly young, probably near 40. She said that she had lymphoma and was looking for a bone marrow transplant, but wasn’t having any luck finding someone. That’s when I remembered that I was lucky to have had Breast Cancer (sounds weird, I know) and that’s when it got me. She continued talking and mentioned that she used to be Zumba instructor. That really got me. When I was diagnosed, most people mentioned something about the fact that they couldn’t believe I had gotten Cancer because I was so healthy. Clearly Paulina was a really healthy and active person too. Cancer doesn’t discriminate. Then it was my turn and of course, the composure that I had, was gone. I quickly took my turn and through a choked up voice said that I valued my positive attitude (…irony…). We didn’t see Paulina too much through the weeks of the living strong living well classes. But she was undergoing treatment still, so people have missed classes here and there. I didn’t think too much of it. Then on Monday, our trainers informed us of her passing, and said it was a few weeks prior. That was the last time that I remember seeing her, was a few weeks ago. It hit me harder than expected, since I really didn’t know her. That night I made a donation in her name to the leukemia and lymphoma society. It got me thinking, when she signed up for this class, I’m sure she didn’t know that she would be dying part way through the class. I’m sure that, like me, she thought that this would be a good way to regain the strength that she lost during cancer treatment. I can’t imagine what those last weeks were like for her and her family. And although I don’t know her family, I’m sending healing thoughts and love their way.
This has also got me thinking about those first dark days after my diagnosis. Before I knew exactly what I was dealing with (stage, whether it had spread, how long I had to live, etc.) I had decided in my mind what I would do if the news wasn’t so great (lucky for me I got significantly better news). Many of you know of my goal to see all fifty states before I turn fifty. Well, I decided that if I was going to die soon, I was going to sell off all my stocks and cash in my investments, and Jim and I were going to road trip across the country so that I could see all fifty states before I died. Obviously we didn’t need take that plan of action. I’m very thankful for that.
I’ve been back to work for the past three weeks now, still working 50% (from 7:45-11:30 every day). It has been, well, a lot of things. 1) Great. I’ve enjoyed working again and I like my class a lot. It was supposed to be a year a challenging behaviors, but some of those kids have moved. Not going to lie: super stoked about that. I like staying busy and teaching and so that part has been really great. 2) Exhausting. I go straight from work to radiation and then come home and nearly always take a nap or rest. In hindsight, I probably should have stayed out through radiation (Jim is enjoying telling me that he told me so). My Breast Cancer friend, Liz, says that’s it’s kind of strange because even though it doesn’t seem like you’re doing much to your body when you are going through radiation, you really are. Liz is very wise. 3) Very strange. It’s kind of like I’ve been in a time warp for the past 8 1/2 months. I know the world carried on without me, but no place is it more apparent than at work. In some cases, like the garden club, it just continued right along (yay!). In other cases, like volleyball, it wasn’t going to happen if I didn’t come back right at this time. No blame or judgement, it’s just an observation and a twilight zone kind of feeling. All these things that happened while I wasn’t around and normally I am around for all of it, it just feels strange. 4) Challenging. While my long term sub did the best he could, and I appreciate him very much, he had to start the year off for me without knowing how I normally do things. In a more perfect world, a long term sub takes over the year for you when you already have your procedures and routines in place. Then the kids can help out by letting him or her know how you do things and the structures are already in place. So having to reteach all of this and sort of undo things is frustrating because I would like to be teaching. 5) Appreciated. Everyone has been so kind and caring in welcoming me back. My Braly family really is the best.
I’m still going to my Nutrition school and in the past few classes, cancer has been covered. This has me thinking about the causes of my cancer even more. Here are my main thoughts: Obviously the BRCA1 mutation puts me at a huge risk for Breast Cancer. The gene is on my fathers side of the family (he was one of 11 and there are tons of cousins, the exact number I’m not sure of). I’m the youngest grandchild on that side, so for me to be the first person to find that gene, makes me think that other lifestyle factors caused the cancer to happen so early in my life.
From 8/2013-12/2013 I was taking Hormone Replacement Therapy. (Backstory: my migraines happen much more frequently during my menstrual cycle, like everyday, so they are clearly tied to the fluctuations in my hormones, so my neurologist had me wearing a hormone patch during the week of my period for that time frame). The estrogen in the patch, estradiol, is linked to Breast cancer (straight from my lectures in school). Even though my cancer was hormone negative, I believe there is still a link.
I was also on the birth control pill for the better part of a decade. One in eight women get breast cancer in our society and how many of them have been on birth control for lengthy periods of time? If I were to have a daughter, I would not want her to take birth control ever. Wrap it up. I know, it feels different, but so does cancer. My point being that prescriptions have side effects and the FDA isn’t looking out for us. Big pharma creates a drug and then designs a study to prove its effectiveness and safety to submit to the FDA. Does that seem backwards to anyone else? I sure hope so.
Moving along. Antibiotics. How many courses of antibiotics have you been on in your lifetime? If you’re like me, it’s more than you can count. If you’re like my friend Sarah, it is one time, in her wholelife. (That really got me questioning the amount of antibiotics that I’ve been on.) I’ve been on them at least once or twice per year since I was about 18. Also, when I was 17ish I went to my dermatologist for acne. She put me on amoxicillin. I was on it for well over a year, but I think it was more than two years. I literally wiped out the colony of bacteria in my digestive system. That colony of bacteria is your first line of defense for everything. I’m not saying antibiotics caused my cancer, but I do think they contributed to my body’s inability to fight the cancer. Obviously, these are my opinions and I’m not a doctor. Duh. But my point is that I think western medicine and doctors played a large role in my cancer.
If I could go back and change my actions to avoid getting cancer, I would do it in a heartbeat. I can’t do that, but maybe I can influence you to think twice before doing some of these things too. [steps off soapbox]
Since my birthday is on Wednesday and I finish cancer treatment on Monday, I will be in a very celebratory mood this week. Just nine months ago, this is a birthday that I wasn’t sure I would get to celebrate. I’m pretty stoked that I get a thirty-second year of life. Feel free to wear pink tomorrow on the last day of radiation.
Hi there #teamklb!
I hope you are all well. I am doing well and feeling well.
I have completed nine of 25 days of radiation so far. I will be finished on March 16th, just two days before my 32nd birthday. I will be very happy to be finished before my birthday. So far, radiation is going well. Not much skin irritation or feelings of exhaustion. (Although I am more tired lately but I’ve been quite busy planning a surprise party for Jim – it was yesterday and boy, was it fucking awesome!- I’ll add more party details here soon) Occasionally, I’ll feel a bit more pain in the area that’s being radiated – the right breast, but it’s pretty infrequent. It is a cumulative process, so I imagine things will start catching up with me soon.
I start work tomorrow! (YIKES!) I’ve had a slough of mixed emotions about it over the past few days, but most of them are positive. I met with my long term sub last week and we discussed the transition back into the classroom. I’ll be working from 8:00-11:30 each day and he’ll be teaching in the afternoon. This will allow me to slowly ease into things and continue my radiation. My radiation appointments are literally less than a quarter mile from my work, so that makes it easy. After that, I’ll have a bit of time to rest in the afternoons. I’m looking forward to getting back into my pre-cancer life.
I hope to bring to the classroom an environment that encourages kids to take care of one another and focus on compassion and support for each other. As a kid, I remember thinking that it was really important to be smart (THE most important thing, in fact). My Uncle Bob and I had a conversation about which Disney character was better, I said Mickey because he was smart, while he thought Goofy because he was nice. I very vividly remember this conversation, sitting on the davenport (any non-Essenmachers know what that is? The sofa!) in my grandparents living room. This conversation has always stayed with me, and until becoming a teacher, my answer remained the same. But I now know that being kind is a much more important character trait. From my experience, you can’t teach adults to be nice, but you can teach them new things. All of that to say, my classroom will be one that fosters kindness, caring, and support for all students. This is not to say that I never cared about fostering these things before, it has always been important to me, but it is so hard with all the standards and all the students to always make it a priority. But we only get one life, and I want to make sure that my influence on the students is through a learning environment that supports kindness, caring, and support. Although, I will really miss hanging out with the Roxbury dog pack everyday.
Many of you know that the BRCA1 genetic mutation that I have also increases my risk for Melanoma, the deadliest of skin cancers. (Thanks to the doctors office pamphlet for that little tidbit of fear-inducing information.) I had my annual mole check the second week of February and the doctor decided she wanted to biopsy a mole on my back just in case. Those four days of waiting we’re pretty tough. Jim says he knew it would be fine, but I no longer feel that way about any test results. Luckily, it did come back negative and we’re all good.
The PSA for the day is that you should be doing mole self checks (for me she suggested monthly) and be going to get your skin checked by your doctor as needed. I’ve said this many times during my cancer treatment, but cancer has taught me that life is for living. Not to put things off or think, maybe next year I’ll do that thing that’s I’ve always wanted to do. Nobody has the luxury of time, none of us know our futures. If you want something important in your life, make it happen.
Thanks for your continued love and support! I’ll continue keeping you updated. Lots of love!
Hello Team KLB,
Welp, it’s been 8 weeks since my surgery (as of tomorrow). I can’t believe it’s been 8 weeks. The first few weeks passed slow, but the month of January has flown by. A friend from support group messaged me the day before surgery to help reassure me and to tell me that her surgery really wasn’t something that she remembers well because it really wasn’t that bad. While I couldn’t believe it then, I do believe it now. I do remember many details of my surgery, but it really wasn’t all that bad. (Thank goodness!!!!)
After reading a friend’s blog, I’m going to take my inspiration from her and do a little Q & A section.
Q: Are you bored yet? / What do you do with your time?
A: Nope. Between crafts, my dollhouse project, visits from friends, exercising, reading, nutrition schoolwork, cooking, housework, and doctors appointments/ treatments, I don’t have time to be bored.
Q: Do you miss work?
A: Not really, but a little bit. I am looking forward to the “new” teacher that I’ll be. As I’ve said before, this has completely and forever changed me, so I’m excited to see that carry over to me as a teacher.
Q: Are you going back to work this year?
A: Yes. The date has been pushed back several times, but it’s finally at a point that I feel comfortable with. Feb. 23rd I go back 50% (half days M-F) and then full time on March 16. Many people have asked why. Here’s the long story: In my teacher’s union we have a Catastrophic Leave Bank for just such occasions. You can choose to opt in and donate one of your ten days each year to the bank. (We get to bank our personal days each year.) So I had 33 of my own “sick” days to use to start the year off. After that I’ve been collecting days from the bank. This means that I’m currently not using disability and therefore am getting full pay. I don’t want to take advantage of the days from the bank and so I’m choosing to go back at the end of treatment. Hopefully that wasn’t too long/confusing!
Q: What size are you going for?
A: C cup. My coconuts were a very full D cup, and a little more than I wanted, so I’m downsizing. But this feels like a very small C cup, if that. My expanders fit 500 ccs of fluid and as of today they are full. (Yay!) So I can’t have them add any more fluid and the radiated skin won’t stretch well, so they can’t stretch it during my swap out surgery. So this is about as big as I’ll get. Not a big deal, but I’m a bit bummed.
Q: How do they fill the expanders?
A: My plastic surgeon uses a magnet to find the magnet in my expander (like a stud finder :), then marks my skin. Next, he cleans the area with iodine, then fills a syringe with saline and pokes it into the skin and then injects the fluid. He empties the syringe, unscrews the syringe, LEAVES THE NEEDLE IN, fills the syringe again, screws it back in, and then empties that syringe into my expander. Repeat on left expander. Each syringe holds 50 ccs, and I was having him do 100 ccs per doctor visit (hence the refilling of the syringe). I told Jim that this is what it feels like to be a bike tire or a basketball being inflated. I only felt a little poke for each needle and then a bit of discomfort as the skin stretches to make room for the new fluid. Overall, very painless for me.
Q: What’s your timeline like?
A: Regularly scheduled radiation starts on 2/9. 25 sessions (5 days/ week for 5 weeks). It will be finished by March 13th. Six months after radiation, I can have the swap out surgery. I’ve been told it’s easier than the original surgery, with a quicker recovery. After that (I’m guessing mid October) I’ll have nipples made. The plastic surgeon makes some cuts in the skin and sutures the skin in a way to make a protrusion. After that is finished, he can tattoo an areola on (I’m hoping mid November). Around the one year anniversary of my remission (my re birth day – 12/8) we will be having a huge celebration. Stay tuned for more details. So today was my radiation simulation. Basically they make you lay in a table for a hour and figure out exactly where they are going to radiate you. It’s long and a bit uncomfortable, but mostly uneventful. Except at the end, when they gave me two tattoos. They are very small dots, one on the right side of my rib cage (didn’t hurt), and one on my breast bone (hurt). I thought that radiation would start right after (tomorrow). WRONG! They have to review some stuff, and blah, blah, blah. It doesn’t start for two more weeks. There goes my timeline again!
Here’s an assortment of random thoughts that have crossed my mind lately. In no particular order: A friend of a friend, Melissa Galvin, a former 49ers cheerleader, just lost her battle with breast cancer. She was 34. She had breast cancer several years ago, and it had come back after being in remission. She has been on my mind a LOT lately. This is a fear that I will live with everyday.
While in Anaheim, I was able to meet Jim’s drumming buddy Justin. We had an instant bond. He has a rare heart condition and initially his odds weren’t very good. He also knows what’s it’s like to wonder if you’ll be the person that dies tragically young. Luckily, he just celebrated his 3rd rebirth day. It was really great to meet him.
Someone women choose not have reconstruction. I always knew I would do reconstruction, but for the time that I didn’t have any breasts at all, for about 3 weeks, it was so awkward. I felt the need to tell everyone everywhere I went, strangers included, that I just had a mastectomy and that’s why I looked like this. This helped me to know that immediate reconstruction was the right path for me.
A lot of hardships for my work family in 2014. I won’t to into detail here, as they are not my stories to tell, but it has been really challenging for me to deal with these sad times for others. And while this might sound crazy (I take pride in being honest and open on my blog) I’m really a little worried that there might be some sort of curse. I know, crazy, right, but it’s my fear.
Yesterday I started the Living Strong, Living Well program at the YMCA. It is a free program for cancer survivors to help regain strength, flexibility, and coordination. I was the youngest person there. Luckily, a friend from support group is doing it with me (Yay!), so I won’t have to go it alone. I’m hoping that this will help put me on the road to shedding this chemo weight. I’ve also started physical therapy on my knees for pain that I was having last spring. The knee pain has only increased with the loss of my muscle mass during chemo and after surgery.
This year I didn’t make any New Years resolutions, but I have some resolutions that I made after I was diagnosed. Basically: Live everyday to the fullest. I’m still trying to work on this one. Nothing is as shitty as hearing, “Katie, I’m so sorry to have to tell you this, but you have cancer”, so all the little stupid shit is not worth my time and energy. Also, make time for the people that are important in your life, see them, talk to them, be there for them, because our time here is too short.
Ok, that’s all folks! Thanks for all that you are Team KLB!
Hello Team KLB!
It’s been about two weeks since my surgery, so I’ll let you know how things have been going lately.
12/3 – surgery day. Waiting for surgery to happen on surgery day was the worst. Once surgery was rescheduled, I was pretty much in denial that it was happening and went along my merry way, not thinking about it AT ALL (probably not the best idea, but it was my coping mechanism of choice). Then on Monday 12/1, it started to sink in again. By Wednesday, when I woke up, I was a) thirsty as all get out and b) HUNGRY and c) ready for this to be over, but I had to wait until noon for surgery; it was going to take forever!
Once I was admitted and got all cozy in my hospital bed (NOT) the slew of nurses and doctors came through. They asked me if I was in any pain and I said hunger pain! Of course, my surgeon was running late! My plastic surgeon came by and drew all over my breasts (I still had “x’s” on my lymph nodes – from the day before) to mark where he would be making incisions. Finally, around 11:45 (I expected to be on lovely drugs by 11:30 so they could do presurgery stuff) my surgeon came by to check in, wrote on me some more and then I was finally allowed to get a relaxer drug. The rest is fuzzy. Exactly what I wanted. I semi-remember being wheeled into the OR.
Then as I’m being wheeled into the recovery room, I remember asking for water and telling them I have to pee. Little did I know that I had a catheter. After eating some ice chips in the recovery room, they wheeled me to my hospital room. We passed a male nurse that I was told would be checking on me shortly, I believe I told him hello and that I recognized him. HA! I was very drugged up, but he did look like someone I went to high school with. Jim, Jared, my mom, and Kamy were in my room! Yay! It was over. My family relayed the good the news that the preliminary results of the lymph node biopsy were negative. At the hospital they had me on morphine and norco, and I was never in much pain. Until they made me get up. Unknown to me, in the OR they put me in a stretchy tube top thing that Velcros on and off. It wasn’t velcroed and the nurse and Jim fashioned me in the tube top before I could get up. It hurt soooooo bad, as did getting up. Especially since I was not able to put any real weight on my arms or use my arms to pull me up. By the time I got up, I felt light headed and didn’t last long, so I laid back down. During the night, as I was sleeping I remember saying (to no one) “March 18, 1983”. If you’ve been to the hospital/ doctors office, you know that before they give you meds or anything at all, they scan your wrist bracelet and ask your full name and birthdate. So I was talking in my sleep as Jim can tell you I often do. Jim was in the room, but I’m not sure if heard me or not.
On Thursday, I got up a couple more times and was more successful in walking around my floor. They removed my catheter (side note here: I didn’t know that they would be working with those lady bits too and felt very unhappy without previous knowledge of this) and said I could go home once I peed. Success! I also saw both surgeons that day and they said everything went well and was looking well. My plastic surgeon said I didn’t have to wear that tube top, which was amazing news! I had been reading about bringing pillows for the car ride home, and they did make it much more comfortable. It was nice to be home and to see my doggies.
Over the past weeks, I’ve had to sleep upright on my back only or in my borrowed recliner (thanks Sarah and Kevin!!) and could only do minimal self care. The other “fun” part was the drains that you have to wear until your drainage is minimal. These help you to heal, but are annoying. They had to be emptied several times per day and I wore in a special tank top that had pockets to hold them. Yesterday (12/15) at my dr. appointment, he took the drains out. YAY!!! The right one didn’t hurt at all, the left one only hurt a little. My mom said it reminded her of when she had tendon surgery on her foot and they put a pin to hold it in place (it remained for about 6-8 weeks). When they took it out, Kamy said, “wow! that’s much longer than I thought!”. It was much longer than I thought too. I was glad to be able to take a shower yesterday!! I’m finally off of pain meds – only taking tylenol as needed and so far, I’m pretty good. The worst side effect of norco is constipation. I happen to be a very regular girl, so this has been very unpleasant. I’m starting to return to my normal self. ;0
Yesterday, during a post op appointment with my plastic surgeon, he did not fill my expanders. 🙁 He also didn’t fill them during surgery because my skin was seeming too sensitive and irritated. Because he removed the drains, he didn’t want to poke and prod me any more by filling my expanders (even though I said I was fine since the drain removal process wasn’t bad). So I continue to be a member of the ity bity titty committee, at least for another week or so (my first appointment for expansion is on next monday). I now know what it is like for the other half and can sympathize with your struggle. My clothes do not fit like I’m used to and so far, I’m not a fan. They will fill the expanders to 500 ccs of saline in either 100 cc or 50 cc increments. My plastic surgeon said for some women it’s too uncomfortable to fill 100 ccs, so 50 is the better option. Thus, it will either take 5 or 10 weeks to fill the expanders and they won’t start radiation until after they have been fully expanded. At this point he said I can begin to resume my normal activities as I feel I’m able to and that I can start to lift things that are between 5-10 pounds.
I think most of you heard my good news on Facebook, but last Monday 12/8/14, my surgeon called and asked if I wanted to hear some good news, no great news. He informed me that the lymph nodes were clear and no cancer was found. This means that the chemo was successful in killing the tumors and there wasn’t anything else lurking around. He said this was the best possible result. So as of 12/8/14 I am in remission. FUCK YES! We are all beyond excited and it’s still surreal. Christmas came early for me this year :). I saw my oncologist yesterday and he said he will continue to monitor me and see me every three months for the next five years.
Amy said I needed a new hashtag – not #cancerbabeshappydays since I no longer had cancer, she suggested #cancerfreekatiemarie and #cancerfreeklb. I love both but wanted to add the word happy in there as a nod to my earlier project #100happydays and #cancerbabeshappydays so I decided on #cancerfreehappyklb. And apparently there are some tattoos in the works for some family members to commemorate that date/my kicking cancers ass. I feel pretty honored.
As always, thanks for the flowers, meals, walking buddies, emails, calls, texts, FB messages, cards, prayers, and good energy. I love you #teamklb!