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/
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!
On the night before surgery, I figured this would be an appropriate way to say goodbye to my breasts (it’s meant to be a bit funny and a bit sentimental). So here goes…
Entered into Eternal Life: 2014
Katie’s Coconuts made their debut early on in her life and while they sometimes made her feel self-conscious, she never had to worry about being able to fill out a bra. In middle school, because of their mere existence, they helped her to get the nickname, Katie Coconuts. Their fondest memory was sunbathing topless on the beaches in Nice, France with Sara and Sarah in 2007. They will be remembered for helping Katie to feel like she never wanted implants (oh the irony!), never needing a push-up bra or those chicken cutlets, and for fighting off those cancer cells as long as they could. They enjoyed dancing, swimming, and hiking. They are survived by: the rest of Katie’s mind, body, and spirit. They will be missed by men, lesbians, and bisexuals, everywhere.
Okay, all joking aside, I think it’s important to say goodbye to a part of yourself that you’re never going to have again. When I was first diagnosed, my feelings towards my breasts were hatred, anger, resentment. But now my feelings have grown to love and appreciation. I think it’s more healthy to have these feelings, because I don’t want to be consumed by hate, anger, or resentment.
A couple of last minute things: My surgery is at noon tomorrow (please send pink healing thoughts at 11:30, so that I will get all your good mojo right as I need it most!). It’s about a 4-6 hour surgery. Jim will use my facebook account to post an update when I’m out of surgery. Feel free to wear some pink and post a picture on my wall. I will enjoy seeing all of your love and well wishes once I am recovering.
As always, thanks for all your love and support. It means so much to me and it’s easier for me to stay positive with the help you all provide me.
For those of you that haven’t heard, my surgeon is out stick, so my surgery has to be rescheduled. Unfortunately, the first available date for my surgeon, plastic surgeon, and El Camino Hospital is 12/3 – two weeks later. While I want my surgeon to be healthy for my surgery, I just wish it didn’t have to be delayed so long. It’s also challenging because I was just getting into the right frame of mind for surgery and was feeling excited to have it and get it over with so that I can start moving on. My other biggest disappointment = on Dec 5th and 6th is the Santa Clara Historic Homes tour. Every year Jared and I ride our bikes from house to house. It is seriously one of my MOST FAVORITE days of the year. AND the house I have been coveting for 12 years is finally going to be on the tour. Wah!!!!! But enough complaining, here are a couple of positive outcomes: I get to put up my own Christmas decorations (thanks for your offers of help, but I really LOVE to put up the decorations), I have more time to practice my Prepare for Surgery, Heal Faster meditation, I will be able to work on some school work/ nutrition client work, I will have more time to exercise/ work on this chemo weight, and maybe I’ll work on my dollhouse. Oh and since everything got rescheduled, I made a new goggle doc for meals and walking buddies. If you already scheduled yourself, please check your calendar and update this one.
As always, thanks for all of your love and support. It takes a village to fight cancer and I’m glad you’re in my village.
Hi Team KLB!
The end of chemo came and went and I am enjoying my time before surgery. The cupcakes and cocktails was awesome! Thanks to those of you that joined us! Overall, I’m feeling pretty good, but I’m still more tired than normal, I still have neuropathy in my fingers and toes, my muscles are still weak. My hair is starting to grow back, it’s quite fuzzy on my head :-). Some of you may have seen that we were able to take a trip to Pittsburgh to attend a friend’s wedding. We had a great time. I’m glad we finally got to have a bit of fun!
Mini-rant here: apparently the TSA thinks a head scarf = terrorist, because I got extra searched after going through the x-Ray scanner. Jim was about to lose his shit. Luckily it was quick. It was just me that they “randomly” searched both ways. I have never been randomly searched before. We didn’t let that ruin our trip, but it was ridiculous. They obviously have never had cancer because I don’t have time to plot an elaborate terrorist plan using my head scarf, I have healing and living to do. Terrorism isn’t on my agenda. Duh!
I went to visit my students today during our VIP reading week. I was a guest reader. They were very excited- I was like celebrity 🙂 We still have a few fight shirts left- if you still want one, let me know. $15 each. Men’s shirts run true to size, women’s shirts run small. Here’s a list of what’s available: MENS: one medium, two large, one x-large, two xx-large. WOMENS: one small, two large, one xx-large.
My surgery is scheduled for next Thursday 11/20. As of now, I’m nervous, but I’m sure I will be. I hope to deal with the emotions of it when it’s actually happening/ happened. I have made a google doc for meals mad walking buddies and Christmas decorations help- if that’s your thing, you’d enjoy it more than Jim will (I love to decorate for Christmas and would be really sad if there weren’t any decorations up this year.) Please remember that we are gluten free. In general we eat paleo, which for us means: limited grains and dairy, but as long as it is gluten free, I’m happy. (Beggars can’t be choosers.) As always, thanks again for your continued love and support. You’re awesome.
Okay folks, here you have it. The week I’m feeling like shit and hating everything, it’s only fitting that I complain a bit. This is not because I want a pity party, but just need to vent. I’m fully aware that this too shall pass and in general I like to think that I’m not a huge complainer (we all have our moments) but this time I’m going big. I thought I might put them in order from worst to least bad, but that would be really challenging, especially since there would likely be a five way tie for first place. I know I’ll get through this last week of feeling like crap, but…
– Diarrhea. Period.
– This damn BRCA mutation and anyone in my family that might also have it.
– Rashes because of having to have a picc line. Rashes that are like 50 whiteheads oozing. Then the nurse saying that “it’s not that disgusting”. Wait, if this was your arm with this nasty rash, how would you feel, nurse?
– CANCER CANCER CANCER. Period.
– Hot flashes.
– Having to have a Picc line and therefore having to take “bottom half” baths.
– The fear of being plagued by this cancer bullshit for the rest of my life.
– Jackasses on the road (I know, not cancer related, but these bay area roads are getting out of control).
– And traffic while we’re at it.
– Having to cancel TWO vacations this year due to cancer bullshit (Aruba in June and our Post Chemo, Pre Surgery trip to Cabo that was supposed to happen next week).
– Chemo being delayed by a week.
– When the doctor and nurse saw my lowered liver enzyme levels, (after chemo was delayed) and they wondering what could have lowered them. I said that I ate well (clean, healthy protein, cruciferous veggies, beets, etc.), drank lots of water, and limited my sugar and they said that can’t be it. But never offered another reasonable explanation. Fury level reached maximum. Well, Doc, if you’re not able to explain it, then I guess I’m right. Food does impact how our bodies and organs perform. Sorry Doc. I’m right.
– My lack of control over everything breast cancer.
– When I ask the Doc “what can I do?”, and the Doc says “just eat normally”. BAD doctors. At least tell people to eat more fruits and veggies and get some exercise. Would that be so hard? There’s no way it could hurt.
– Chemo brain and chemo weight gain.
– Radiation, which I apparently will need to have for five weeks. Bah.
– Adrymicin and the infiltration (aka chemical burn to my forearm) that gets re-aggravated with each chemo session. My arm not being able to heal because of chemo.
– My bald head getting cold now that it’s cooling down.
– Not being able to sleep while on the ‘roids.
– Hearing on multiple occasions, “you’re too young to have cancer”. Umm, Clearly not. Don’t make statements like that. *Especially*, if you’re a doctor.
– When things don’t go according to my “plan”. Aka chemo infiltration, picc line having to be put in, plans changing, etc. I have so little that is under my control, when things don’t go as planned, I’m even less flexible than normal.
– When I’m feeling like crap and people saying something like “you’re so strong” instead of “that sucks” or “I’m sorry”. Sometimes people just want to have their feelings validated and there isn’t a need to cheer a person up. Just listen. Feelings aren’t always positive and it’s okay to acknowledge them with out trying to cheer the person up. It can invalidate very real feelings by just saying, “you’ll just fine”. [that may have sounded harsh or mean, but a) this is for rants and raves b) they are my feelings and I’m entitled to all of them, good and bad]. This is something that we talk about at support group and something that I needed to learn too.
Well, I feel like I’ve gotten everything off my chest. (Haha, joke!) Surgery has been scheduled for November 20th at El Camino Hospital. I’ll spend one-two nights in the hospital and then be home recovering. I hope I’ll get to enjoy some thanksgiving goodies.
On the eve before my LAST CHEMO!!!!!, I thought I’d update everyone as to what’s going in the world of Breast Cancer. (I’m trying not to be too excited just in case my blood work doesn’t come back with good levels, but it’s hard to not be extremely excited.) We did a “it’s the night before my last chemo” dance and it felt great!! I have felt the best that I’ve felt throughout chemo during this last round (well the last 10 days of it). I attribute that to clean eating (good protein, lots of fruits and veggies, seeds, and limited dairy, carbs, and sugar) and LOTS of water. I recently read Your Body’s Many Cries for Water and decided I needed to up my game. As always, feel free to wear some pink tomorrow and shoot me a selfie (I will be compiling these eventually). I’ve got some *special pink* for tomorrow that I will post as usual.
Still planning on doing my rants and raves post because I have PLENTY to complain about, but I’ll save that for next week when I feel like a$$ and need to vent/complain/have a pity party. Stayed tuned! It should mostly make you laugh 🙂
So long as chemo goes as planned tomorrow, here’s what I’m looking at:
~ PICC line out TOMORROW! (another happy dance is needed for this)
~ A Cupcakes and Cocktails party on the last day of this cycle to celebrate the official end of chemo. I’m not going to be in full blown celebration tomorrow, because I still have to endure the round of chemo (actually getting the chemo infusion doesn’t hurt and it doesn’t set in until a few days in). But I will be in full blown celebration mode at the end of the round. Once chemo happens tomorrow, I’ll post an evite to this page. Again, STAY TUNED. And please RSVP, you know I’m anal about these things, plus I want to make sure there are enough cupcakes. 🙂 CUPCAKES!!!
~ Mastectomy and reconstruction! Still waiting on an exact date but we’re looking at the week before Thanksgiving. After both the appointment with the surgeon and the appointment with the plastic surgeon, I’m not sure why, but I felt very excited. Probably because I can see the end nearing. I’m sure I’ll be freaked out on the days leading up to surgery, but for now I’ll enjoy the feeling of excitement (hasn’t been a common feeling since May-ish, so it’s nice).
~ Recovery takes about 8 weeks and I can’t lift things over 5 pounds for the first few weeks, so if you’re willing and able, trips to the grocery store, pet food store, water store, and meals would be super helpful. I’ll post a google calendar to this page soon. Visitors and walking buddies will still be much appreciated during recovery too. They’ll be filling my expanders once each week during this time to slowly stretch the skin for the implants.
~ In January-ish – Five weeks of radiation (five days each week). Not really looking forward to this, since I didn’t think I needed it initially and therefore it’s not a part of “my plan”. But I know the side effects are less than those for chemo – mostly fatigue. After surgery & radiation I might have to fly with a compression sleeve on my right arm (because they are removing lymph nodes) to avoid permanent lymphedema (swelling of the arm). I’m not sure if I’ll be back to work during this time or not. Many people have said the fatigue is too much, so we’ll see.
~ Six months after the end of radiation I can have my expanders swapped out for implants. After that, I can have a out patient surgery to make nipples and then a final out-patient surgery to have areola tattooed on. All of this will be done by the plastic surgeon. He also said that everything related to my breasts will be covered by insurance for the rest of my life – federal law. That was awesome news. We have also met our yearly out of pocket for insurance. That was awesome news too.
Well, that’s about it. Thanks for being the most amazing people that you are. You effing rock, I love you.
On Thursday 7/3, I met with the genetic counselor and learned that I have the BRCA1 genetic mutation. The good news is this helps to explain my cancer and why I got it at such a young age. The not so good news is this means I’m at a higher risk for a second breast cancer and for ovarian cancer. Also it increases my risk for pancreatic cancer as well as melanoma.
My mom and Jared will also have the genetic testing done so that we can learn about prevention for those family members that may also carry the gene. (This gene also increases risk of male breast cancer and prostate cancer.)
What this means is that I will likely have a double mastectomy and reconstruction as well as an oophorectomy (ovaries and fallopian tubes removed). This significantly reduces my risk for either breast or ovarian cancer later. While this is shitty, I’d rather go through this one time and then move on with my life. My decisions aren’t final and I will do more research first, but this is the plan at this point. The other genetic mutations that I was tested for came back negative and they would have increased my risk for many other types of cancers. In other news, I’m feeling like myself again and can carry out normal daily activities without exhaustion. Thank you for your continued support, love, and kindness. You are all the most amazing people and I am lucky to be able to call you my friends and family.