Following Up

October 3, 2008

I just called to make my yearly follow-up appointment at Stanford Cancer Center for the Hodgkin’s Lymphoma I had 7 years ago. When I finished treatment, I went back every 2 months, then every 3 months, then every 4 months, then every 6 months. I’ve been going once a year now for about 4 years now. I always have very mixed emotions going there. On the one hand, even though the cancer center at Stanford has been completely redone since I was treated (it used to be in the basement of the hospital and now it is in a gorgeous new building with high ceilings, harpists, a library, a cafe, a pharmacy…and I’m sure the infusion center is lovely too…well, as lovely as that can be anyway), it still feels so very familiar. Being back there is both a triumph in my recovery and survival…and a stressful and worrisome experience. Not that I really worry about my lymphoma coming back, because at this point my oncologists say that I am back to same risk that the normal population has of getting the disease. I worry about some of the long-term effects from the chemo and radiation that I received showing up. Lung cancer. Breast cancer. Heart disease. But mainly I worry about the breast and lung cancer. 

This year, I have to have a mammogram and MRI (since I am 35 and, as we have all learned from Christina Applegate’s experience, in dense breasts, breast cancer sometimes goes undetected with mammograms so MRIs are recommended for women under 40 who are at high risk for breast cancer). Many of the ladies on this website know far, far more than I about breast cancer. But what I do know is the early detection is key and if you know you are high risk, you just have to be educated and do the exams that will catch it. 

So this year, my follow-up appointment will be a bit different, due to this additional test. I’m actually not sure of the statistics about how likely it is that I will develop lung or breast cancer…and I don’t think I want to know at this point. It is enough to be doing the testing and the prevention piece of things. I don’t want to live in fear or in the shadow of what might be later on. I just want to enjoy my life and do the things I can do to manage the risk. Wish me luck!

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Living Strong

July 14, 2008

“It’s one thing to survive, and another to live. Never stop.” – Lance Armstrong

Today I am doing something that I haven’t done for about 5 years…running a race for charity. The Livestrong Challenge in San Jose. It is about 6:45am and I am waiting at bag check for some buddies from Silicon Valley Moms and then we are off to Live Strong. Wish I was biking the 100 miles, but my bike skills are a bit rusty! We’ll be running the 5K and that will be just fine living for today.

Oh, and this is my first post from my new iPhone (love it!). I have a feeling I’ll be blogging more due to this bit of technology…

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I send a text to Ana and Courtney about 6:50 am to let them know that I am standing by bag check and next to a sign that says “Starbucks –>” (tempting…). Ana originally organized us Silicon Valley Moms as a team and here we are. I see a cute girl who has a “I’m a Survivor – 11 YEARS!” and I ask her where she got it. She points and I head that direction, feeling a bit lame because I was leaving where I had just texted Ana and Courtney telling them where I was. I quickly get my Survivor tag, write “For 7 Years!” on it, head back and see the cute girl standing by the Starbucks sign. She has her phone in her hand and says “Are you Linsey?” Ha! It is Courtney, turns out. (We have not met before…such is the blogosphere at times). We talk about our respective cancer experiences, blogging, coffee drinking habits, our kids. Ana soon arrives – apparently she had slept in a bit (the one who organizes get to be late).

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Fast forward to 7:30am – We wander over to the start line for the start. Yellow balloons everywhere. Many survivor tags on bikers and runners. I see one that says “15 months…” As in, and counting and hoping and holding. Many “In memory of” and “In honor of” tags. We suddenly hear Lance’s name. Huh? We look over and see Lance himself about to take off. I have watched many a Tour de France with Lance climbing those hills and gripping those handlebars, but to be 5 feet away from him is pretty amazing. I didn’t even know he was going to be there, so it is a nice surprise. He’s right – it’s not about the bike. But still.

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We watch the bikers start – the 100 mile and 10 mile riders. Many kids are out there for the 10 mile ride. How cool is that? I can’t wait to start taking my kids to races (not in a jogging stroller!). How exciting for a kid. And probably really tough.

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7:45am and the 5K runners and walkers are off. We are accompanied by cancer patients survivors being pulled in wagons by bikers, cheering and waving and inspiring. The wagons are decorated with all kinds of yellow signs and banners. Ana, Courtney and I are all different paces, so we split up. Along the course I think a lot about people currently going through treatment for cancer, those recently diagnosed, recently in remission and surviving. I remember sadly two of my friends who have passed away from terrible lung cancer just in the past year – both were new mothers, Beth lived 2 months, Sarah lived 9 months. I thought of all the great women that I am getting to know on this new Mothers With Cancer blog I am a part of. Being a lymphoma survivor, I have done many races (marathons, bike races, triathlons) with the Leukemia and Lymphoma Society’s Team in Training in the past, so am quite familiar with the waves of emotion that tend to hit me as I plod along a race course. It can be tough. Not as tough as cancer treatment, that’s for sure. But today feels really good as well. I am not sure exactly why, but it is somehow different than my previous races. I feel very proud to be wearing that “Survivor” tag and to see all the other survivors around me. Instead of feeling like a poster child for pity, I feel incredibly empowered. I am thankful that I am one of the lucky ones that get to live, to enjoy my children and a very full life. Post-cancer, I try to live my life not for the small minute details, but the big picture of the relationships I have. Carpe diem indeed.

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8:18am – Those 3 weeks off from boot camp are showing a bit and I really have to push it toward the end a bit. I see the overhead balloons for the finish line and a sign that says “Cancer Survivors go to the right.” I head to the right and receive a lovely yellow rose. I love flowers! How nice. My finish time is about 30 minutes, I think. About right for a race pace for me, so I’m pleased. I see Ana just in front of me. We go through the “showers” – ahhh, that feels good in the heat. We talk about Ana’s friends whose daughter has just been diagnosed with AML. Courtney soon follows and we tour the post-race festivities, grab some food, water, coffee. We part ways to go home to our respective families and the Sunday activities. Later, I hear from Ana that she ended up staying until Lance finished his 65 mile ride (only 65 miles?!) – she caught this cute photo of his butt. Actually a quite familiar sight to Lance’s competitors, I am sure.

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I really liked this race from a survivor perspective. I like that it includes all cancers. I like that it really and truly celebrates survivors. I like that it remembers those who have passed and who survived when they were living. I encourage survivors, patients and their supporters to, in the words of the Livestrong Foundation, “pick a fight.” This one is important.

Crossposted at Me Too You.


The Luckiest Accident I Ever Had

June 6, 2008

On Valentines’ Day 2001, I was heading home from my Silicon Valley dot-com crazy job. My plan was to cook dinner for my husband of one year. I was 28-years-old and had recently run a marathon for the Leukemia and Lymphoma Society’s Team in Training program. I felt fine, great actually. 

Then, wham! I was in a car accident. A cute little old man turned left from a side street and whacked right into me – he was on his way to buy Valentine’s Day flowers for his wife. I was not really hurt, but the seat belt caught me hard and I was completely out of breath. I had broken a rib snowboarding a couple of years prior, so I thought that was probably what was up. The next day, I headed into the doctor to get it checked out, knowing they wouldn’t be able to do anything for a cracked rib, but documenting it for my insurance records from the accident. I had actually had an appointment with a doctor already for that day, because I had noticed a mysterious lump on my neck, a swollen lymph node and was slightly concerned. When I got to my appointment, the doctor I saw (I didn’t have a primary care physician at the time – after all, I was 28 and in perfect health! No need, right?) told me that I needed to chose what I wanted to be seen for – the lump or the car accident cracked rib (and by the next morning, serious case of whiplash). I asked him which he thought was more important and he refused to give me any advice. I am normally a pushover when it comes to medical stuff (whatever….), but for some reason, something told me this was NOT right. I left – really pissed off – and headed to urgent care. I was determined to see a doctor that day for both issues. 

When I got to urgent care, I was seen right away. The doctor I saw there felt the lump and ordered a chest x-ray. I remember reading Ayn Rand’s The Fountainhead (which I was never able to finish after this day) and waiting for the doctor to come back and tell me that I had a cracked rib. I actually remember imagining him coming in and telling me I had cancer and then dismissed it as ridiculous and going back to reading. Minutes later, the doctor did come back in and showed my the x-ray. My chest was full of tumors – surrounding my heart and lungs. He told me he thought it was likely Hodgkin’s Lymphoma and quite treatable with chemo and radiation. I didn’t really hear anything except that it was cancer. How could this be? I was stunned. Absolutely stunned. I had just run a marathon. How could I have tumors filling up half of my chest. 

I got in my car and sobbed. I drove home, hardly seeing through the tears. I called my husband and told him to come home right away. I beat him by a few minutes. When he walked in, I told him that I had really bad news, that I had cancer. We cried. He asked for details. I told him what I knew and gave him the pamphlets the doctor had given me and the schedule of tests I was undergo to “stage” the cancer. I started making calls. My parents – it was very tough to tell my dad especially, who had heard the news about my older sister’s breast cancer just 5 years earlier (she has been in remission now for 13 years!). My twin sister – even tougher, as we are so close and she had just moved away to Newport Beach a few months prior. My older sister who had been though treatment for her breast cancer gave me hope. She told me not to think the worst. She gave me perspective. My husband and I started doing research and learned that this was a fairly treatable cancer. I started to feel lucky. 

The next day, I went to work and told my team. My boss’ brother-in-law had recently been through treatment for Hodgkin’s. I called him and he gave me hope. He sent me a bunch of books. I will forever be grateful for that first conversation with a recent survivor who sounded so strong. 

The next 3 weeks are a blur of staging – needle biopsy (inconclusive), bone marrow biopsy (ouch! but luckily negative), biopsy on the swollen lymph node on my neck (I almost died on the table when the surgeon rested an instrument across my neck on the corroded artery, he luckily realized his mistake in time…), a PET scan during which I had to lay perfectly still for hours (talk about having time to think). A work colleague had connections at Stanford and got me in quickly to their oncology department. I met with them and immediately decided to do treatment there. The same day I went upstairs to the fertility center where I met with the woman who would 3 years later become my fertility doctor – we discussed the possibility of freezing my eggs (I was 28 and a newleywed, after all!), but due to where I was in my cycle and the size of my tumors, my oncologist recommended strongly against waiting to start treatment by the 4 weeks it would take to harvest the eggs and extract them. If I had not been in that car accident, my disease would likely have been much more progressed by the time it was diagnosed. I found out that it is actually pretty common for Hodgkin’s to be diagnosed via an accident like this, because you are usually talking about young active people who have few symptoms other than a swollen lymph nodes, which they think nothing about and can be caused by so many things, that doctors often tell people to come back in 3-6 months if it the swelling has not reduced. 

I was officially diagnosed at Stage 2A “bulky” (meaning that over half of my chest was filled with tumors) Hodgkin’s Lymphoma.  I promptly started 12 weeks of weekly treatment on the Stanford V chemo protocol. This protocol was designed to try to reduce the nasty long-term effects of the traditional chemo protocol for Hodgkin’s, which works, very well, but has large risks associated with heart and lung damage later on down the road, as well as sterilization. And, since this disease largely affects 18-35 year olds, these long term effect are pretty significant to quality of life later on down the road.  

I remember my first chemo treatment. I was scared. Very scared. The nurses wore special suits and gloves while they dispensed Nitrogen Mustand into my veins – the stuff that was used to gas people in long ago wars. But…I ended up handling chemo very well. I had side effects, but they were manageable. I took many, many drugs to counteract all the side effects. I suffered pretty extreme insomnia, which I managed with Ativan, that lovely sleeping pill. I chewed gum to hold off mouth sores. I drank prune juice, ate whatever fiber I could and went for daily walks, sometimes even runs if I felt good enough, to reduce the extremely painful stomach pains. I shaved my head when my hair started to fall out – it hurt at night when it fell out and pierced my head on the pillow. That was actually empowering – the head shaving. I made chemo buddies – especially one guy who was also newly married. We had chemo together every week – my husband and his wife would go to the cafeteria and get us french fries. Sometimes, one of us was too sick to eat. Over time, we both became weaker. I had a PICC line put in (I hated this), because my veins were finally becoming extremely inflamed and red. I actually have very good veins, but that toxic chemo gets almost everyone’s veins in the end. 

I finished chemo and had a party. A big party. I was so sick and tired of chemo, I didn’t think I could do any more. Those last few treatments had been the hardest. In a few weeks, I started daily radiation. 5 weeks long. That was no big deal for me. I had no side effects at all, barely. I had a PET scan and was declared to be in remission. Success! It was over. But…I still had to process things. It took a lot of time to let go. I think it is something I will always deal with. My dark moments were there, but overall I was very positive during my treatment and I think that helped me a lot in my capacity to cope with side effects. 

I remained very involved with the Leukemia and Lymphoma Society’s Team in Training and ran another marathon 4 months after finishing chemo, 2 months after finishing radiation. I was very, very, very slow. But I finished. And my husband and 2 friends ran it with me. My twin sister came and ran the last half of the marathon with me, talking me through that last, long 13.1 miles. It was a huge accomplishment and I am so thankful for the people at the Society for that community support. 

Two years after I finished treatment, I asked my oncologist for “permission” to try to get pregnant. The chance of a recurrence of Hodgkin’s go down dramatically after 2 years, so I was given the go-ahead. We tried, and tried, and tried. Eventually, we were back at Stanford, back in that fertility clinic. This time, it was for happy reasons and we became pregnant with twins after doing injectable fertility drugs and an IUI (intra-uterine insemination). Wow! Now we felt really lucky. And my oncologist and nurse at the Stanford cancer center were ecstatic. Even more happy was the day, 19 months later that I found myself with a late period, and an unplanned surprise pregnancy without any fertility drugs.

Last week, I celebrated my 7-year anniversary of finishing chemo. This summer, I will celebrate my 7th anniversary of finishing radiation, getting a clear PET scan, and hearing the word remission. Being so busy with my three small kids now, it is hard to remember the “bad dream” of cancer. It seems very far away, yet so close, because without it I am not sure where I would be in life. I certainly have changed my perspective on life in general due to my cancer diagnosis and treatment and my relationships with people have forever been altered. Life after cancer is full. Very full. And I treasure every moment I have to live it.