29 July 2011: I receive the phone call with the results from a biopsy taken from my right breast. I have cancer. Infiltrating ductal carcinoma. Needless to say, my weekend was…. rough. And so begins my journey with breast cancer.
Weekend: Like any person with the ability to run google searches… And like any professor of science quite good at using search engines to learn new-to-me science… I did a lot of research. This research educated me on the terminology of my cancer, some of the biochemistry of my cancer, the expected outcomes depending upon staging and other factors… On the one hand, I did a great job of learning a ton about this cancer and about its treatment and about ISPY2. On the other hand, I became absolutely terrified that I would discover that I am stage IV, and I ended up wondering if I would see my child make it to middle school. He is a rising fourth grader.
1 August 2011: I have my first appointment with my surgical oncologist – Dr. Zera. Yup – that big o word – oncologist. Why does that word sound scarier than the cancer word? I don’t know.
A bit of disclosure. Like many science professors, I’m a little bit on the spectrum, and I tend to process information very very quickly. I am not a linear thinker, and I do not like to be talked to like I’m seven. (or feel like I’m being talked to like I am seven). I had a lot of questions, including whether the biopsy procedure might have loosened cells as the core needle went into the tumor a few times…. The answer, according to research DZ has read regarding this very issue is NO worries about cancer spreading due to the biopsy procedure. Sounds like really interesting research, actually. Someday in the future, I might even look at the images associated with the research.
Summary of that appointment – comminucation with DZ felt EASY – In fact, I wonder if maybe he has a relative is Aspergers or something similar… EASY – I felt he listened to my questions with great care, and he gave thoughtful answers and was very clear about what he did and did not know. As of Monday, very few results were in. I have breasts of a young woman. I have dense breast tissue (one of the risk factors for breast cancer over which one has no control). I was introduced to the idea of participating in a study called ISPY2. The love of my life was at this appointment with me (what would I do with out her). We were at the clinic for two and a half hours. DZ is a very patient communicator – I feel good about how we communicate. He explained that I should have a mastectomy of my right breast, to which I responded that I would rather go bilateral so as to be symmetrical afterwards, to which he responded that this would be perfectly reasonable. He explained that I should do the chemotherapy first as the longitudinal data for this approach is just starting to show a slight but significant improvement for long term outcome when chemo precedes surgery. That was a surprise to me… Also, it turns out, that is the order of events for the ISPY2 study. The big plus is being able to detect whether chemotherapy is actually doing anything to the cancerous tissue. I then had an introduction to the study by the head nurse, Julie.
To sum up, I had some blood drawn (bad bad bad blood draw), and I ended up with orders for a PET scan to test for spread to other parts of my body and an MRI to get good images of both breasts. I also received reading materials for the ISPY2 study. He did a good job of helping me not totally freak out, and he gave me a script for xanax (apparently, referred to as vitamin x during the early stages of cancer treatment). Overall, this appointment was overwhelming and comforting and scary – one big roller coaster.
Tuesday – the ONLY DAY THIS WEEK that I was not at the clinic.
Tuesday morning – interval ride with my training buddies. This was a hard ride. Anytime cancer or chemo or related things popped into my mind, I worked harder. I stayed out of the draft the vast majority of the time, and I even “won” one of the intervals (that means longest distance for the interval). I felt delightfully spent at the conclusion of the ride. Thank you thank you thank you to my friends who are my training buddies.
Tuesday afternoon – I tell my research group. I did some research about how a person tells people about a cancer diagnosis. As someone on the spectrum, I took this step because I needed to educate myself about how to talk about it. We had our regular group meeting… and then I asked the summer students to leave… and talked to my grad students and post doc. Can I just tell all y’all how wonderful my group is! This was the hardest conversation I’ve had about the cancer diagnosis – telling them I have this diagnosis and that I will be facing chemo followed by surgery and that it will be a tough six months. I love my research group right now – it is composed of six graduate students and one post-doc. I have also a few undergrads and two brand new grad students doing rotations in the group. These people are wonderful people, and they made it easy on me. I am sooo very thankful to them.
Wednesday – Before the PET scan, you are supposed to have a quiet body for about 24 hours… I was told to amble everywhere, not mow the lawn, not work out, etc… So, Tuesday evening, I ambled home on my bicycle, even running an errand on my way home. Wednesday morning, I rode very very slowly to work – riding with this woman on her hybrid part of the way – having a lovely little conversation – enjoying the break in the heat…. I went to work in the morning, thinking I could get some stuff done before reporting to the PET scan place … Yeah – epic fail that. I did get some email correspondence done… but very little else. I did talk to a few people that I felt I needed to tell in person…
Then, I reported to the clinic for a short meeting with the ISPY2 doc (short because he had a tiny opening in his schedule). I had a few questions, but I was feeling confident that participating in this study would be a good idea after reading the Nature article, some other literature on the study, and the consent paperwork. More on that later. I signed paper work, and the MRI orders were modified so that higher resolution images would be obtained – consistent with the protocol of ISPY2.
After that very fast appointment, I reported to the PET scan place, where I completed my paperwork for both the PET and the MRI, so that I would be free to take xanax if I felt I needed it. I was injected with radioactive glucose and had to drink a dye shake. Cancer cells uptake glucose at a faster rate than other tissues at rest. So, the idea is that cancer stuff will light up in the PET scan, and other stuff will not. Well, active things light up – like your heart… But the idea is that the cancer will stand out. The dye shake was a texture nightmare for me – first sip, and I called out to ask whether I could take a xanax… YES – was the answer…. That helped… but it was hard to get that stuff down (I have texture issues). Then, I think I fell asleep for a while during the one-hour rest period before the scan. Then, I think I might have kind of fallen asleep in the PET – until they asked me to take a deep breath and hold it…. Overall, I felt very relaxed. People were super nice, and Xanax did it’s job well. Because I was to have a second scan with dye later in the day, the nurse suggested I keep my IV line so that I didn’t have to get poked again. I agreed that this was a good idea… so they wrapped my arm, and off I went. I now had two hours before I was to report to MRI.
I have a new rule – this rule will last throughout my cancer treatment and monitoring and all of that – if I get stabbed with a needle or any needle-like or other sharp device, I get to have a jamba juice. So, I went to jamba juice (right around the corner from the hospital / clinic) – five fruit frenzy with b vitamins. Yummy…..
Then, I went back to the office, and managed to connect with a few more people that I preferred to tell in person, including the chair of my department. Once again, I was talking to awesome people… Kind and smart people. Thank you to all of my colleagues (if you are actually reading this).
Back to MRI – so nice to have the IV already there. The nurse was delighted too, because he could put away about 80% of what was on the tray for my set up. MRI is loud, which is why I received the script for the xanax in the first place. I am very sensitive to loud noises – I flinch and jump and generally just tense up. It’s just part of the way I am… Small tube? No problem. Clanking noises – big problem. So, about an hour before the MRI, I took a second xanax (consistent with the scrip instructions). So, by now I am quite relaxed. In fact, I drift off at least twice during the MRI.. … And that thing is LOUD LOUD LOUD!!!! When people tell you it’s loud, believe them, because it is super loud.
Wednesday evening – I ask my son, what do you think about your mama having a mohawk for a little while… He said – that sounds okay. I have had quite long hair for a few years… In fact, Wednesday morning, it was down to the middle of my back. But, when I asked Tre about cutting it all off, he told me that he really didn’t want me to cut it all off… and so I didn’t. I’ve been wanting to and wanting to… but I didn’t, because he had told me that he likes my long hair… and sometimes he would play with it a little bit… SO, having this conversation with him Wed evening made me feel good about shaving my head…. with a little left on top for some fun. Won’t last long, though. Soon, I thought…. Soon….
Sleep – normally, I do not have insomnia. Now, however, I fall asleep well… and sleep around 4 hours… And wake up. And wake up HARD! Up til now, I’m up thinking about chemo, dying, cancer everywhere, seeing my child make middle school, researching various things about cancer…. Wednesday night, I slept like a baby. All that xanax, I guess.
Thursday morning – I get up feeling well rested (first in days) and join my buddies on a training ride. Feels good to ride with them. I cannot sustain a focused, red-line effort for more than about 30 seconds… the tiniest things distract me. Overall, I’m riding fast and strong… But I sucked at all the sprints. Oh, and I sucked at the monster hill too. I was having a little bit of trouble with my bike, so I stopped at the shop and dropped off my bike. Those guys are so awesome at Grand Performance – they loaned me a bike so that I could make my way to work…. THANKS GUYS!!!!
Thursday afternoon – biopsy – ever had one of these? It’s not fun. This biopsy is for the ISPY2 study. They take a tissue sample and characterize it. Then, they match you to the class of drugs that are targeted to your cancer. Then, one of the therapeutics is randomly selected for addition to the chemotherapy regimen. So, basically, my chemotherapy will be what is currently best practice plus this targeted agent. Actually, the scheduling of my chemotherapy is somewhat different too. Based on recent work, outcomes are better with lower but more frequent dosing, so I will be having weekly chemotherapy treatments. Well, I took a xanax about an hour before reporting to the biopsy… good decision! I felt very relaxed, and the doc who performed the procedure did a great job. MUCH LESS BRUISING than the first time. Five samples total – packed up on dry ice and shipped to the lab in california.
Mega mango in my hand (yummy!)… I’m crossing the street – and there’s Great Clips right there. They handle donations for Locks of Love… and my conversation with Tre runs through my mind. I feel ready to just get-er done. First hair cut in two years, actually. Anyway, I leave with most of my head shaved and about a one-inch faux hawk… And the breeze on the back of my head feels glorious…. Mmmmm…… that feels good.
I return to my office, and I have a meeting with some of my students – actually, I biffed that because I thought our meeting was at 3:30p… but it was at 3p…. Sorry!!!! After, I start to get some email stuff taken care of – some accounting things – work on recommendations for travel grants for my students – check my mail – nothing super intellectually demanding… but stuff that had to get done. Step out the office for a bit – come back to a phone message from DZ – PET scan is NEGATIVE for evidence of spread …. That’s really the only part I heard…. Later, I would hear the part about having a cyst on my ovary – not news I’m happy about… But whatev – NEGATIVE for evidence of spread – I have a shot at being stage II…. I’m not stage FOUR!!!! I cry a little. I call Cheryl… I cry a little. I space out for a while…. get a few little things done. Then, I get a call from the shop – Eddy – to tell me my bike is super awesome now… So, I say, what the heck, I’m gonna head to the shop, pick up my bike, and ride home… At the shop, I get to share the good news with my friends there… I get home with just a few seconds to spare to show my new haircut to Cheryl…. She rubs my head. I love that. She rides off to class. I love her so much. I’m very lucky to have such a person in my life….
Then, it’s off to the team party… I’m feeling good about the new hair cut – I get a lot of positive feedback. I share my diagnosis with a few friends… I have one whiskey lemonade… I take extra kidlets, and all three kidlets (my child, his friend, and his friend’s sister), and they have fun. Then, we ran an errand to pick up a bike for a german student spending two months in my lab… .and then I hang out with my close friend, who lives just down the block and is the mom of the two extra kidlets I took to the party. The boys are playing – having a great time… Carmen and I are hanging out on the back deck – I share my first bit of good news… and we cry…. Oh man – I’ve cried a ton this week, and I’m just really not a crier.
Friday – my early morning mountain bike friends went off to Wisconsin, and I couldn’t take that kind of time away from work. Actually, I feel kind of cranky about that… I had a ton to get done today, and I had several meetings… My day at the University finished up at the clinic, with a detailed meeting with DZ.
Stage IIA – T2, N0, M0: The tumor is larger than 2 cm across and less than 5 cm (T2) but hasn’t spread to the lymph nodes (N0). The cancer hasn’t spread to distant sites (M0).
Official outlook: I should be optimistic for a good result, but it will be a hard fall and early winter.
What’s up for next week?
Monday – meeting with ISPY2 doctor.
Wednesday – installation of a port for easier administration of the chemo. Yeah – can you say XANAX first thing in the morning? I’m nervous about this one.
Wednesday (hopefully) – ultrasound to check out the cyst on my ovary. DZ feels confident it’s nothing to worry about, but there’s a chance it could be something to worry about.
Friday-Saturday – 24 hours of Powderhorn (bike race). Our team name is Cancer can kiss Lee’s ass!
Chemo – that will start as soon as the randomization step is completed. My biopsy went out Thursday of this week. The study attempts to get processing done in five business days. I expect chemo will probably start the week of 15 Aug.
My word has my vision of fall changed dramatically. Whereas a month ago, I was looking forward to productive grant writing at work, teaching my bicycle freshman seminar, a hard cyclocross racing season for both me and my now-cx-racing-age-ten son, and a little bit of business travel. With cyclocross nationals in Madison this season, my goal was to really hit it hard for a peak in January.
Now, I will probably write a couple of grants – collaborative grants, teach my bicycle freshman seminar, enjoy DFL-ing in as many cyclocross races I can make, support my child in his first cyclocross season, and go on just one of the business trips if I can manage it. I’ll be working hard on my technical mountain biking skills. I will learn how to brake less – I will find the flow – I will get faster by simply improving my technical skills. I’ll lose fitness… I’m told most people gain weight on chemo… I’m worried about that and plan to work hard to be as close to maintaining my weight as possible.
An upside – there’s this committee assignment that I USED to have… It was a committee assignment that has caused me a ton of stress these past two years. Most of its work occurs in the fall, and it’s hard work, in my view. It’s really important work – important to the future of our department – the quality of research in our department – etc… Oh but I find this committee stressful. So, I have a love hate relationship with this committee…. So – returning to that first sentence… this is the committee assignment I USED to have…. PHEW! I will have stress – that is some stress I do not want.
I’m very lucky to have loads of wonderful friends who have been so kind… Many people offering to help out – hang out – listen….
Right now, here’s what I think I’ll need… and what I need will probably be quite dynamic. I need to be in charge of when I talk about cancer. If someone asks me about it, I need to be able to say, I don’t want to talk about it, and have the topic dropped. MOST people have done this with me this week… and done it with such kindness and with smooth transitions into talking about something else. Other people cannot accept that and simply demand more information. If I say I don’t want to talk about it, please accept that. Please just let me be in control of that. And I promise you – my friends – if I do need help, I will ask for it. This is not something I’m terribly good at, but I plan to learn that skill. And thank you in advance!!!!