5 Years!

I guess it’s been a while since I posted – exactly 2 years, in fact…and so much has happened.  I can’t let today of all days go by without a post.

5 years ago my life was turned upside down.  5 years ago I started worrying about things I never thought I had to before.  5 years since I heard the words, “You have breast cancer.”

Dr. P says that the 5 years from date of diagnosis without recurrence means that I’m “cured.”  Dr. C says it’s 5 years from the last chemo treatment.  Since that’s another 18 months away (or so), excuse me if I’m not celebrating yet.  I do feel pretty good, though, and all my mammos have been clear.  I recently had a keloid removed from my left breast which was bothering me, and that went well.  I put on weight because for so long I ate whatever I wanted in order to keep weight on…and now I’m trying to get that extra weight off.  I’m doing intermittent fasting – fasting for 16 hours, eating for 8 and it’s going pretty well.  I haven’t gotten on a scale recently, but my “fat” jeans are pretty loose now.

I changed jobs again about a year ago, and I love it.  I’m with a small startup which has a managed solution for fundraising based on Salesforce.  I feel like I’m contributing, my job is a little bit of everything, and I get to meet people from all over.  I never would have thought I’d be in the for-profit business, but since we are making something to help higher education and non-profits, I think I can be excused.

The Chang family has had a less than ideal year. My SIL passed away at the end of September, and my BIL 3 weeks later.  My sister has been diagnosed with Stage 4 colon cancer, and she is like a second mother to me.  The family dynamics are slowing changing – some of the next generation have found partners, and are successful in their own rights.  I guess that’s to be expected, as life goes on.  At least for me, for now, life goes on cancer-free.

One Year Down

It’s been 8 months since my last post, but that’s not because things haven’t been happening, both on the medical front and otherwise.

The biggest change these past months is that I am not working. I took the next couple of months off, and then headed to Australia in mid-November, where I was chairing a conference. My husband joined me and we spent almost 3 weeks vacationing Down Under. If going to Australia is on your bucket list, GO. A beautiful country with so much to see, with friendly people and great food. We can’t wait to go back.

As soon as we got back from Australia, I had my port removed – finally.  After having it in for almost 2 years, my body had started to integrate it and it was very difficult to remove. I was sore for a few weeks from all the cutting that needed to be done. Now I have a pretty nasty keloid scar, which occasionally itches and is just generally annoying. I’m thinking of getting my first first tattoo in and around it, just because. What to get….

Since the new year, aside from looking for work, I’ve been busy with volunteer work and trying deal with other ongoing issues from my cancer treatment. Yep, still have diarrhea and take 2 Imodium every night. Yep, still have neuropathy in my feet. Yep, have curly hair – and less of it, too. The muscle aches in my knees are better, and I wonder if it’s because my magnesium is more “normal.” Apparently drinking soda can be a cause for low magnesium, and since I haven’t been working, I’m drinking a lot less Diet Coke. I used to drink 1-3 Diet Cokes by noon, mostly due to stress. My ankle, for which I was getting PT in the fall, is good, and my shoulder is slowly getting full range of motion back. I can finally zip up a dress…with difficulty, but I can do it.

My last chemo treatment was May 6, 2016, and so much has changed since then. Well, really, so much has changed since my diagnosis in December 2014. I had my annual diagnostic mammogram in March (I can never have just a screening mammogram), and it was normal. I continue to see my oncologist every 3 months and my breast surgeon every 6 months. I’ve put on weight because for so long I didn’t care what I ate as long as I could keep it down.  That habit plus not working resulted in the extra pounds, which I need to lose. All in all, though, I’m fairly lucky:  I am feeling well, I have a great support system, I have medical insurance, and my prognosis is good. Life could be worse.

 

Same Old, Same Old…sort of

A lot has happened since my last post, starting with my last infusion of Herceptin on May 6, 2016.  Time to celebrate!

It’s great to hit that milestone, and the clock starts ticking now towards being “cancer free.”  I was aggrieved to learn that the counting doesn’t start until one is all done with everything – chemo, radiation, surgery…so for me that’s May 2016.  So I can’t say I’m cancer free until May 2021!  Oy.

Despite being done with Herceptin, I haven’t had my port removed yet because I continue to need magnesium.  Only once, in May, was my level 1.7; otherwise, my level remains stubbornly at 1.5.  So every 3-4 weeks, when I’d need a port flush anyway, I go in and get some magnesium, usually 2 grams. At my last visit with Dr. P, she wants me to keep my port for at least another 3 months. She wants to make sure my level doesn’t go down, and if it remains steady at 1.5, then I guess we’ll assume that’s my “normal” level. I’m still taking 800 mg a day orally, so it’s pretty amazing that the level hasn’t changed all that much.

A side effect of taking magnesium orally is diarrhea, my old nemesis. I continue to take 2 Imodium every night, and still have diarrhea at least 3-4 times a week.  I still have neuropathy in my feet, but I think it’s slowly getting better. The muscle aches have gotten better, although not gone completely.

I recently had my 6 month checkup with Dr. W, my plastic surgeon, and he says everything looks great. I’m certainly happy with the results of the reconstruction. He says the scars will fade over time. I asked him whether I’d have ptotic breasts again, and he said while it’s possible, he doesn’t think it’s likely. After all, there’s simply less tissue (I lost a breast and cup size in the reconstruction). I guess that’s finally something to be happy about from all this!

As if my body hasn’t been through enough, I had shoulder surgery in July. Pure genetics: I had the same surgery on my other shoulder 5 years ago. My AC joint needed more space, so the surgery is to shave off part of the clavicle to create more space in the joint compartment. I got my range of motion back almost immediately this time, so I’m going to physical therapy to strengthen the muscles.

An unintended consequence of physical therapy was that my ankle started acting up.  I broke both bones in this ankle in 25 years ago, and so I thought the pain might be related to that. The MRI showed no structural damage, though, so the orthopedist ordered physical therapy. Yep, I go to PT 3 days a week! After 5 sessions of PT for my ankle, though, I think that my muscles were really tight from disuse. After all, for 18 months I didn’t have the energy to do anything much. So ankle PT has been to stretch and strengthen leg and calf muscles, and the pain is definitely much less.

The real wake up call though, was last week. I had my 6 month checkup with Dr. C, my breast cancer surgeon…and she found a mass. She thought it might be scar tissue, but wanted to make sure that’s what it was.So I had an ultrasound, and the radiologist suggested a biopsy. I thought, “here we go again.” She also wanted a mammogram to compare with the one I had in March. She put a marker in place just in case.

Fortunately I didn’t have to wait too long for the results – the mass was scar tissue – or in clinical terms “fat necrosis.” I was so relieved to get the news, but this whole incident just reminded me that my journey isn’t over…not by a long shot. It was a stark reminder that no matter how well I feel, how much I might feel like “me,” my cancer diagnosis will never, ever go away.

Almost Done – May 4, 2016

I can hardly believe it…but I’m almost done with Herceptin treatments.  17 months of chemotherapy:  while the last few months have been a piece of cake compared to the early treatments I wouldn’t wish chemo on my worst enemy.  Chemo, quite frankly, sucks.  It changes one’s body in unimaginable ways.  And I didn’t even have the worst side effects – for example, I never had taste changes or mouth sores.  I still lost 15 pounds, but it wasn’t because I couldn’t eat.  I could eat, I just couldn’t keep anything down.

A few weeks ago I had an odd pain on the side of my right breast. Fortunately I had an appointment with Dr. P the next day and I told her about it. She did an exam, and ruled out lymphedema. She poked around my shoulder and thought I might be getting bursitis. She suggested that I see my PCP. The next day during my infusion the chemo nurses asked if I had any pain (they ask every time) and I told them about the discussion I’d had with Dr. P. They suggested that I try acupuncture. I said sure, and remarkably, it’s covered by insurance! Last Friday I had my first session. It’s a bit odd, I don’t mind saying. To look over and see needles sticking out of my shoulder, arm and hand…I don’t know if it was all in my mind, but it felt like my shoulder was cooling down. I have 5 more sessions scheduled; the pain in my breast has pretty much disappeared but I still have some pain in my shoulder, so I’m hoping the additional sessions will help.

Otherwise nothing much else has changed. I still have neuropathy in my feet (wrinkled socks!); I have diarrhea at least 3-4 times a week despite the fact that I take 2 Imodium every night. And I still have muscle aches and headaches. My magnesium level today was 1.7 – tantalizingly close to the 1.8 “normal” amount. I guess I’ll still get magnesium on Friday along with Herceptin, but what else is new?

 

Birthday Week Reflections

It was my birthday on Sunday. I’ve always liked birthdays, but after a cancer diagnosis, I think one appreciates a birthday just a little more. After all, I’m still here, and I’m feeling pretty good.  I remember last year I was determined to have cake (I love cake), even though I knew I would throw it up, I wanted to eat cake. This year I didn’t make Ted make me a cake, but I was lucky enough to get home made brownies and coconut pyramids. Yes, I’ve put back on all the weight I lost in the past year. All in one week. 🙂

I continue to get Herceptin every three weeks. I asked Dr. P yesterday what is the exact date of my last Herceptin infusion, and it’s May 6! That means that I have only 3 more treatments. Inconceivable! Yes, I do believe I’m going to make a sign that says “Last Chemo Session” and have a picture taken with it. Everyone is welcome to come with me to my infusion and help me celebrate!

Well, at least it will be my last chemo infusion. My magnesium continues to be low. While Dr. P thinks it’s due to the Herceptin, she will probably continue to monitor it, and I may receive magnesium infusions for a while yet. My level is slowly creeping up – for the longest time it was 1.4; 3 weeks ago it was 1.5 and yesterday it was 1.6. (Standard range is 1.8-2.4)  Dr. P would like me to take more orally; I currently take 800 mg and I’m going to try taking 1200. It’s a balance, because taking oral magnesium causes diarrhea, and I still have a problem with that from the Herceptin. The low magnesium could also be causing the muscle/joint pain I have. I’ll just be glad when all this is behind me and the joint pain I have is the “normal” pain I have from having had 4 knee surgeries.

I’ve said for a long time that “Life is too short.” Now more than ever, as I look back on the past year, life is too short. Take time to tell those close to you that you love them, and tell them often. Hug your kids, furry or not. Don’t sweat the small stuff. Don’t stay in a bad situation – whether it’s a bad relationship, lousy job, or unfulfilling volunteer work. Do what makes you happy. Because you can’t take life for granted, and life is too short.

 

 

Radiation All Done! – November 18, 2015

Last Friday was my last radiation treatment. It was a little bittersweet, actually – you get into a rhythm, going every day to see the same technicians.  I am happy that it’s over, don’t get me wrong!  The technician said that the way my breast looks now, after 5 weeks of treatment, is what most women’s breasts look like after a week. I’m blessed that I tan very easily. I also have tremendous sympathy for those women:  if this was week one and I was facing 5-6 more weeks of treatments, I’d be wondering how to get through it. My breast and armpit were extremely sore all weekend, and now they don’t hurt, but itches like crazy.  Makes sense – essentially I got a burn, and it’s turning into a tan (which is what happens with me) but in the meantime it’s itchy. So if you see me rubbing my breast or armpit, well…you’ll know what’s going on!

I got to keep the mold. The mold kept me in roughly the same position every time during treatment. I surprised the technician when I got excited about being able to keep the mold. I don’t know what I’ll do with it, but for now it’s a cool keepsake.

I’d wanted to keep my head shaved until I was done with chemo, but I’m letting it grow out a little. In order to stay bald, Ted needs to shave me at least every other day. Now that I’m feeling better and life is returning a bit back to normal, it was just too hard to find time to shave my head every other day. Right now the hair is a super cool length – like peach fuzz. I’ve had people ask if they could rub my head, to which I say “of course!” because I do it all day long myself. I’ll probably try to keep my head buzzed, at least, rather than shaved. It’s still pretty cool.

I’m still pretty tired from radiation. Today was the 3rd day of full time at work, and I’m pooped. At least tomorrow and Friday I work only half days because I have an appointment with Dr. Priya (tomorrow) and chemo on Friday. I got my blood draw on my way home and Dr. Priya already released the results. Unbelievable, my magnesium is 1.6! It hasn’t been this high for a while. I’d read somewhere that drinking soda could lower magnesium because the phosphates in soda binds with the magnesium. I thought what the heck and am trying to drink less soda (I am a Diet Coke addict). Who knows whether drinking less Diet Coke is what’s helping or just feeling better in general, but the magnesium level is going in the right direction.

What about my favorite topic, diarrhea?  Well, I still have it. It’s not every day, and usually not terrible. I noticed that if I forget to take a probiotic pill, I have diarrhea the next day.  Who knows what’s going on, but if I can stop the diarrhea by taking probiotics, so be it.

With the end of radiation, I feel as if I’m 90% done with my cancer treatment. I have 6 more months of chemo, but it’s only every 3 weeks and the infusions aren’t 6-8 hours long. I also usually feel okay afterwards, which is so different from all the “regular” chemo I had. I think I’m allowed to believe I’m almost done!

 

 

Week 2 of Radiation Done – October 27, 2015

I’ve completed 2 weeks of radiation and so far, so good.  Any redness goes away completely by morning. My doc is on a short sabbatical (what is it with my medical team going on sabbatical?), so I saw Dr. R. He said that I was “ahead of schedule,” which I take to mean that I’m not showing any side effects even after almost 2 weeks. I am hoping that my tendency to tan rather than burn will help me get through this with a minimum of discomfort.

Dr. R also said that while I seem to be “well adjusted” that some women, after 6-7 weeks of getting treatment every day, get a little depressed once treatment is completed, so he and Dr. L would like for me to make plans for something after treatment, like a getaway. He said it was doctor’s orders!  We’re going to hope that Stanford football makes a bowl game, and we’ll follow our Cardinal and that will be my getaway.

While the radiation is going well, last week my diarrhea was as bad as it has been. I have to admit that I missed some doses of Flagyl…so I contacted Dr. S, who said I should finish the Flagyl and then we’ll wait to see how things go. I haven’t taken any Imodium since Saturday, so that’s good, although mornings are still tough.  It seems to be getting better, though, so I’m hopeful that the Flagyl did its job. If not, Dr. S said he has another test he’d like to have done. We’ll cross that bridge when we come to it.

My neuropathy is still hanging around. I can’t tell you how many earring backs I’ve lost because I can’t feel the wires or the earring back. And my balance still is a little off at times because I can’t feel my toes. Dr. Priya says it can be months before it goes away. It’s annoying. I’d really like it to go away.

Dr. Priya asked me to participate in a leadership meeting. Turns out I’ll be part of a patient panel in which I’ll discuss my patient experience, both good and bad. The audience is C level executives, department and division heads – about 90 total. I think Dr. Priya asked me to participate because she knew that I am comfortable speaking to a crowd. The panel is tomorrow. Wish me luck!