Monday, June 30, 2014
Sunday, June 29, 2014
Just do things
A lot of people have been asking questions about the fertility preservation process, since it is very similar to what someone without cancer might go through. Shady Grove, where I'm going, actually sends out really interesting and helpful emails, but you'll have to sign up to receive them in order to get the content. This website has a pretty solid explanation of the IVF cycle I'm doing. It started with Ganirelix to quiet things down. Now we've moved on to follicule stimulation with an injection of Bravelle and Menopur mixed together and oral Femara. I had a blood test and ultrasound again this morning. My estrogen is a bit low at 45 and my follicules (all 41 of them!) are a bit tiny, so I've been asked to bump up the Bravelle and come in again on Tuesday for more bloodwork and an ultrasound. The bloodwork and ultrasound appointments start 2-3 days apart and then accelerate to daily towards the end (July 4-8 window, probably towards the later side).
I feel lucky to be such a fertile Myrtle. I have also become an absolute pro at the injections and at mixing my own medications. I didn't get the air bubble out on my first injection, but that's the only time I ever bruised or bled. I am sort of grateful for the amount of belly fat I have. Once or twice I moved the injection site to a little bit leaner spot closer to my hip bone, and the less fatty injection spots are more unpleasant because you can feel any slight wiggle in the needle, as you're closing the plunger, a lot more. Not horrible, just more noticeable. Silver lining, right? I never expected to feel grateful for belly fat.
Dear friends who have been trying to get pregnant for more than 6 months, go see your doctor. Go to Shady Grove if you can. Waiting is just wasting time. Same thing for you people who haven't gotten your physical this year (or in a really long time), go! It's worth it, even if just to hear that nothing is wrong with you.
I gave myself a pep talk this evening. Time to stop making excuses (wahhh, cancer. wahhh, tired. wahhh, my lower back still hurts. wahhh, too much to do, so feeling like doing nothing). Just go do things!
I feel lucky to be such a fertile Myrtle. I have also become an absolute pro at the injections and at mixing my own medications. I didn't get the air bubble out on my first injection, but that's the only time I ever bruised or bled. I am sort of grateful for the amount of belly fat I have. Once or twice I moved the injection site to a little bit leaner spot closer to my hip bone, and the less fatty injection spots are more unpleasant because you can feel any slight wiggle in the needle, as you're closing the plunger, a lot more. Not horrible, just more noticeable. Silver lining, right? I never expected to feel grateful for belly fat.
Dear friends who have been trying to get pregnant for more than 6 months, go see your doctor. Go to Shady Grove if you can. Waiting is just wasting time. Same thing for you people who haven't gotten your physical this year (or in a really long time), go! It's worth it, even if just to hear that nothing is wrong with you.
I gave myself a pep talk this evening. Time to stop making excuses (wahhh, cancer. wahhh, tired. wahhh, my lower back still hurts. wahhh, too much to do, so feeling like doing nothing). Just go do things!
Saturday, June 28, 2014
Energy management
Even though I have very good support and am keeping a positive attitude, I never really expected to feel exhausted from the emotionality of coping with a cancer diagnosis. Energy management, rather than time management, is something I've been paying attention to for a while, ever since reading this book back in 2009, so at least I saw the signs. I still didn't quite expect it though, because other than the fertility shots, I haven't even started treatment yet. Right now, I feel like I need about 3x as much rest and relaxation space as I did before I started having to deal with cancer. It's not that I'm doing anything extra; in fact, I am doing way less. Energy is just required for emotional processing. I'm trying to give myself the space and time to breathe, cry, laugh, scream, and just feel all the feelings till calm and peace return. Sigh. I *want* to be out doing stuff, but I really just need a nap!
Friday, June 27, 2014
Embrace your journey
Risk and luck are not the same. Since my diagnosis, I have at times been feeling very "unlucky" given the odds of being diagnosed with breast cancer at my very young age.
On the one hand, it is comforting to think that maybe everything happens for a reason, but I just can't buy into that wholeheartedly. There are two many good things that happen to horrible people, and too many horrible things that happen to good people for that to make sense to me. Life can seem very unfair.
I was sitting in the doctor's office this morning watching a story about this beauty pageant winner who lost her crown because she is too old according to the rules. She cried on national tv. Yes, that seems horribly unfair for her, but there were rules. She was not eligible to win according to the rules. Tough, but there is at least a reason there. Unfortunately for me, cancer doesn't follow rules. I'd happily trade places with her.
One of the phrases that has been helping me cope with all this is that "you play the hand you are dealt." I can't change having cancer - this is the hand I was dealt. Regardless of whether there is some cosmic reason or whether it is all by chance, I still have to deal with it. I can focus on how I feel, manage my perspective, seek help from others, rally a rockstar medical team, etc.
Two great quotes from this article, "How to Truly Improve Your Luck," that I read today struck me:
If current age is:
|
Absolute risk of developing breast cancer in the next 10 years is:
|
20
|
1 in 1,732 (0.06%)
|
Me at 32 ---> 30
|
1 in 228 (0.4%)
|
|
40
|
1 in 69 (1.5%)
|
50
|
1 in 43 (2.3%)
|
60
|
1 in 29 (3.5%)
|
70
|
1 in 26 (3.8%)
|
Lifetime risk
|
1 in 8 (12.3%)
|
Source: American Cancer Society, Breast Cancer Facts & Figures
2013-2014 [4].
| |
On the one hand, it is comforting to think that maybe everything happens for a reason, but I just can't buy into that wholeheartedly. There are two many good things that happen to horrible people, and too many horrible things that happen to good people for that to make sense to me. Life can seem very unfair.
I was sitting in the doctor's office this morning watching a story about this beauty pageant winner who lost her crown because she is too old according to the rules. She cried on national tv. Yes, that seems horribly unfair for her, but there were rules. She was not eligible to win according to the rules. Tough, but there is at least a reason there. Unfortunately for me, cancer doesn't follow rules. I'd happily trade places with her.
One of the phrases that has been helping me cope with all this is that "you play the hand you are dealt." I can't change having cancer - this is the hand I was dealt. Regardless of whether there is some cosmic reason or whether it is all by chance, I still have to deal with it. I can focus on how I feel, manage my perspective, seek help from others, rally a rockstar medical team, etc.
Two great quotes from this article, "How to Truly Improve Your Luck," that I read today struck me:
- "The best approach [to being lucky], research suggests, isn’t a laser-like focus on what you think you want. It’s to cultivate a radical openness to unplanned experiences, loosen your grip on your goals, and embrace uncertainty."
- "Uncertainty feels uncomfortable, so we’re tempted to do whatever we can to get rid of it. But learning to tolerate it instead will bring you better luck."
Thursday, June 26, 2014
Hyper scheduling...
A non-exhaustive list of many upcoming appointments in the next two weeks:
Acupuncture by Dr. Luke Tian. Tue July 1 @ 11:30am. Never done true acupuncture before, although I am a huge fan of dry needling related to my CrossFit activities. Acupuncture has been heavily studied and has shown in clinical trials to have a wealth of benefits for cancer patients, in particular managing nausea during chemo, pain, and fatigue. Often, smaller doses of medications are required when patients regularly receive acupuncture, and acupuncture has far fewer side effects than the nasty drugs I'll be taking to manage the side effects of the even nastier chemo. 24 acupuncture visits a year are covered by my Blue Cross Blue Shield Federal Employee Program Insurance, and Dr. Tian has specialized in cancer research specifically. I am definitely going. Dr. Tian wants to see me before I start treatment and he asked me to bring all my medical reports and labs so that he can see me as a whole person from the beginning. This is exactly what my radiation oncologist wanted too, even though I don't see her again till December. I am pleased. I really like having an A-team of experts to help me through this. I highly value excellence and precision.
Wig Consult by Hans of Eivind and Hans Salon of Georgetown. Thu July 3 @ 9:30am. These guys have been featured in The Washington Post and the Washingtonian. I met another cancer patient who got her wig here as well. I don't really want to buy my wig at the same place people go for Halloween costumes and cosplay, although many exist. This place is nice. Also, these guys have trained specifically to help cancer patients and have been recognized for their community service. Supposedly it's best to get a wig a few shades lighter, so people just think you got highlights, and also to get bangs, to camoflauge your missing eyebrows down the road. Guess we will see. A wig is partially covered by insurance as a "cranial prosthesis" - the first $350 is out of my pocket, but the ceiling is unlimited. 1 wig per lifetime though.
Skydiving. Sun Jul 6 @ 9am.
Egg retrieval. Early Monday? Hormones will do what they will do. We won't know precisely till 36-48h out. I'll have a ton more fertility appointments as we get closer to this time window.
Look Good Feel Better Group Program. Mon July 7 @ 10am. Offered by the American Cancer Society, "group programs are step-by-step makeover learning sessions led by cosmetology professionals using products donated by the cosmetic industry. Each two-hour, hands-on workshop includes a 12-step skin care and makeup lesson, nail care techniques, and professional advice on how to deal with hair loss using wigs, scarves, hats, hairpieces, and other accessories." You can't get a mani-pedi during chemo because they are worried you will get an infection. Even doing it yourself, nails become weird and thin. Skin gets dry and pale. No eyebrows or eyelashes. The makeup lesson should help before I have to paint them on myself. I am kind of anti-scarf at this point - I don't want to look like a pirate. Hats I love. My grandmother could walk by the rack in any department store and pick up the most lifeless hideous hat, put it on her head, and a few pulls and tweaks later, it became glamorous. Even before Kate Middleton started bringing hats back, I've always had a collection and worn them proudly.
Chemo training with Dr. Bishop, CRNP. Mon July 7 @ 1pm. Learning the ins and outs of all the meds and how to manage side effects.
Port consultation with interventional radiology. Mon July 7 @ 2pm. Some people just show up and have the surgery without ever meeting the radiologist. I am not some Thanksgiving turkey to be presented and carved up by a total stranger. Besides, I am 32. I want to discuss scar placement. I do not find the convenience of nurses a compelling reason to have a 2-3" scar in a highly visible area on my chest for the next 50 years. They will have to deal with it 18 times over 1 whole year. I will have to look at that scar everyday for a much longer time. I hear that they can place the port near your underarm rather than right underneath the collar bone.
Port surgery with interventional radiology. Tue Jul 8 @ 11am. I do still want the port though. I hear PICC lines are horrible. Hard to maintain, prone toward infection. Yuck. No, I will take the port (in as discrete a spot as possible).
Chemo day. Wed Jul 9, nurse appointment @ 9:30am, chemo starts at 11am and lasts 3-4 hours. Want to come? Let me know!
Chemo immune system booster, Neulasta. Thu Jul 10 @ 1:15pm. If my insurance will pay for me to do it at home, I will. I've gotten very good at the subcutaneous injections lately!
Oncology nutrition appointment. Thu Jul 10 @ 4pm.
Acupuncture by Dr. Luke Tian. Tue July 1 @ 11:30am. Never done true acupuncture before, although I am a huge fan of dry needling related to my CrossFit activities. Acupuncture has been heavily studied and has shown in clinical trials to have a wealth of benefits for cancer patients, in particular managing nausea during chemo, pain, and fatigue. Often, smaller doses of medications are required when patients regularly receive acupuncture, and acupuncture has far fewer side effects than the nasty drugs I'll be taking to manage the side effects of the even nastier chemo. 24 acupuncture visits a year are covered by my Blue Cross Blue Shield Federal Employee Program Insurance, and Dr. Tian has specialized in cancer research specifically. I am definitely going. Dr. Tian wants to see me before I start treatment and he asked me to bring all my medical reports and labs so that he can see me as a whole person from the beginning. This is exactly what my radiation oncologist wanted too, even though I don't see her again till December. I am pleased. I really like having an A-team of experts to help me through this. I highly value excellence and precision.
Wig Consult by Hans of Eivind and Hans Salon of Georgetown. Thu July 3 @ 9:30am. These guys have been featured in The Washington Post and the Washingtonian. I met another cancer patient who got her wig here as well. I don't really want to buy my wig at the same place people go for Halloween costumes and cosplay, although many exist. This place is nice. Also, these guys have trained specifically to help cancer patients and have been recognized for their community service. Supposedly it's best to get a wig a few shades lighter, so people just think you got highlights, and also to get bangs, to camoflauge your missing eyebrows down the road. Guess we will see. A wig is partially covered by insurance as a "cranial prosthesis" - the first $350 is out of my pocket, but the ceiling is unlimited. 1 wig per lifetime though.
Skydiving. Sun Jul 6 @ 9am.
Egg retrieval. Early Monday? Hormones will do what they will do. We won't know precisely till 36-48h out. I'll have a ton more fertility appointments as we get closer to this time window.
Look Good Feel Better Group Program. Mon July 7 @ 10am. Offered by the American Cancer Society, "group programs are step-by-step makeover learning sessions led by cosmetology professionals using products donated by the cosmetic industry. Each two-hour, hands-on workshop includes a 12-step skin care and makeup lesson, nail care techniques, and professional advice on how to deal with hair loss using wigs, scarves, hats, hairpieces, and other accessories." You can't get a mani-pedi during chemo because they are worried you will get an infection. Even doing it yourself, nails become weird and thin. Skin gets dry and pale. No eyebrows or eyelashes. The makeup lesson should help before I have to paint them on myself. I am kind of anti-scarf at this point - I don't want to look like a pirate. Hats I love. My grandmother could walk by the rack in any department store and pick up the most lifeless hideous hat, put it on her head, and a few pulls and tweaks later, it became glamorous. Even before Kate Middleton started bringing hats back, I've always had a collection and worn them proudly.
Chemo training with Dr. Bishop, CRNP. Mon July 7 @ 1pm. Learning the ins and outs of all the meds and how to manage side effects.
Port consultation with interventional radiology. Mon July 7 @ 2pm. Some people just show up and have the surgery without ever meeting the radiologist. I am not some Thanksgiving turkey to be presented and carved up by a total stranger. Besides, I am 32. I want to discuss scar placement. I do not find the convenience of nurses a compelling reason to have a 2-3" scar in a highly visible area on my chest for the next 50 years. They will have to deal with it 18 times over 1 whole year. I will have to look at that scar everyday for a much longer time. I hear that they can place the port near your underarm rather than right underneath the collar bone.
Port surgery with interventional radiology. Tue Jul 8 @ 11am. I do still want the port though. I hear PICC lines are horrible. Hard to maintain, prone toward infection. Yuck. No, I will take the port (in as discrete a spot as possible).
Chemo day. Wed Jul 9, nurse appointment @ 9:30am, chemo starts at 11am and lasts 3-4 hours. Want to come? Let me know!
Chemo immune system booster, Neulasta. Thu Jul 10 @ 1:15pm. If my insurance will pay for me to do it at home, I will. I've gotten very good at the subcutaneous injections lately!
Oncology nutrition appointment. Thu Jul 10 @ 4pm.
Wednesday, June 25, 2014
Preparing for the unknown
No one completely knows how anyone will respond to chemo. Each person is unique. I hate uncertainty, and I hate waiting. Trying to take deep breaths and mentally prepare as much as I can through planning, reading to understand, and talking with folks who have been through it themselves. My day in pictures:
 |
| Thanks, Jill, for the reminder that everything will eventually be ok. |
Tuesday, June 24, 2014
First Day of Chemo = July 9
Today's doctor appointments started at 6:45am for bloodwork and stretched on for the full day. Literally did not leave the hospital parking lot till after 5pm.
Major things to report:
1) The cancer hasn't spread. The PET/CT is clear - I have no detectable metastases anywhere. We had a good sense of this from the lymph node ultrasound, but now it is emphatically clear. Using the best medical science for detection through images alone, I am clear all except for that single spot.
5) Still trying to keep good spirits up.
Major things to report:
1) The cancer hasn't spread. The PET/CT is clear - I have no detectable metastases anywhere. We had a good sense of this from the lymph node ultrasound, but now it is emphatically clear. Using the best medical science for detection through images alone, I am clear all except for that single spot.
 |
| Actual results from my PET/CT yesterday. The glowing thing in the center is my heart, and it is supposed to look like that. The other glowing thing is the cancer, and non-cancerous breast tissue is not supposed to look like that. |
2) My heart is just fine. My ejection fraction is 60%, that's the efficiency of how much blood your heart actually squeezes out each beat. Normal is 55-70%. Anything higher or lower is troublesome. I can CrossFit if I feel like it, so long as I listen to my body. I probably will not set any new PRs but I can try to maintain. My radiation oncologist did CrossFit before she moved to DC, and my medical oncologist is a jogger. Whatever I feel up to doing, they say I can do. A heart attack would be very unexpected, thank God. Still, we will be watching this throughout chemo to make sure there are no adverse side effects.
3) Fertility drugs started tonight. My hormones have finally quieted down enough to move on from the preparation injections to actually stimulating the follicules with a new kind of injection. Basically, reproductive endocrinology is a complex symphony, that must begin quietly and will crescendo at the end. I mixed my own drugs for the new injection tonight. Starting to feel like a pro. Josh and I have been playing a different injection song each night. Tonight's was Aloe Blacc's The Man. After it's all over, I'll put together a Spotify list.
4) Chemo starts on Wednesday, July 9. I have been a good student of the process so far, but things are about to get even crazier. I am trying to figure out the exact scheduling of things and will share if I can figure out how to get the calendar feature added to the blog. I've set up a public calendar if you are interested in following along, and I tried to link it as a separate page on the blog (but I can't figure out if it is working yet). I'll probably start using a medicine app reminder too, like MediSafe to help me keep track of what to take when since everything will be on a different schedule. A lot more on this will be coming. Since July 4th will be my last weekend before chemo, I'm planning some kind of a multi-event themed weekend. We'll see. Much more to do in the next few days and weeks.
 |
| Up to 92 handwritten pages in the pink journal of live doctor visit notes. Note my massive and impeccably organized binder of medical reports in my bag. I am a student of my own medical history at this point. |
5) Still trying to keep good spirits up.
 |
| Lupita, gown by Prada. |
 |
| Gown by Sibley Hospital - Lupita totally copied me. |
Monday, June 23, 2014
ECG and PET/CT
Today I spent some quality time with Sibley's radiology department.
First, I had an electrocardiogram or ECG. It only took 20 minutes. Using ultrasound, my tech Robbie was able to show me exactly how my heart was beating (nice and slow) and how well the blood was being moved by my heart (not as well, but low normal). It was all completely wonderful and cool to watch, at least until Robbie asked if I had been sick earlier this year. I was horribly sick during the last part of the CrossFit Open in late March/early April. Supposedly there's a possibility the virus attacked my heart, and I'm still recovering from that. There's also the alternative possibility that the reduction in function was from a previous encounter. There are a handful of times since high school that I've felt as sick as I did this past winter and had fatigue that stretched on for months. Under this kind of medical scrutiny, maybe I am not quite as healthy as I once thought. Robbie suggested long walks as a form of exercise. Grrrrrr. I like long walks just fine, but I don't consider them much of a workout. This has me worried.
Why was this test ordered? The ECG is a pre-chemo baseline, and I will be having them every 3-4 months on my year of chemo. The drugs I will be taking can further reduce and potentially damage my heart function. I do not like this one bit. I do not want to feel like, act like or be treated like an invalid during this little cancer adventure, so I'm going to be asking some precise questions about exercise tomorrow. I still want to move mountains.
Second, I had a PET/CT scan from skull to thigh. It was not exactly a trip to the spa, but it wasn't horrible. There is a smoothie to drink. Vanilla was lovely. People apparently have mixed feelings about the berry, so I'm glad I picked it. I was covered in warmed blankets, injected with a radioactive isotope, and left to relax in a darkened room in a comfy recliner for 45 minutes. No texting or reading, since your brain gets to have glucose first and we don't want a false positive. No exercising the day before either, because the muscles love having sugar to workout the lactic acid and repair the fibers. No, the only thing we wanted to feed that vanilla barium-sugar smoothie to was cancer cells. Cancer cells love glucose and if the other priority glucose functions (brain activity, significant muscle repair) are not occuring, the cancer cells will gobble that sugar up before healthy cells. The PET CT is very sensitive, so we are hoping that if there is anything that is detectable, the scan will show it. After marinating in my radioactive isotopes for 45 minutes, the scan itself only took about a half hour, about 10 minutes for CT and 20 minutes for PET. It is two scans done on the same machine, and they overlay the images after you are done with both. You lay extremely still, wrapped like a pig in a blanket, while an automatic bed tray moves you in and out of a tiny hole in this enormous white machine in a very chilly room. I had my warm blankets though, so I was fine. There were times where I literally felt like the blood vessels in my head or hands were moving, as if magnetized, when the machine would pass over. I left feeling a bit gassy and headachey, but after some breakfast and water I was ok later that day, just tired.
Why this test? The PET CT is looking for metastasis of cancer any place else. While cancer typically shows up first in the lymph nodes (and mine were clear under ultrasound), it could go elsewhere. Cancer cells can travel by lymph vessels or by blood vessels to sites far away from the original mass. Given the way I feel about my odds, I don't want to leave anything to chance. If we can see whether the cancer has gone elsewhere, I want to see it.
Results should be available to my doctors by this evening, so we'll see what they have to say tomorrow.
First, I had an electrocardiogram or ECG. It only took 20 minutes. Using ultrasound, my tech Robbie was able to show me exactly how my heart was beating (nice and slow) and how well the blood was being moved by my heart (not as well, but low normal). It was all completely wonderful and cool to watch, at least until Robbie asked if I had been sick earlier this year. I was horribly sick during the last part of the CrossFit Open in late March/early April. Supposedly there's a possibility the virus attacked my heart, and I'm still recovering from that. There's also the alternative possibility that the reduction in function was from a previous encounter. There are a handful of times since high school that I've felt as sick as I did this past winter and had fatigue that stretched on for months. Under this kind of medical scrutiny, maybe I am not quite as healthy as I once thought. Robbie suggested long walks as a form of exercise. Grrrrrr. I like long walks just fine, but I don't consider them much of a workout. This has me worried.
Why was this test ordered? The ECG is a pre-chemo baseline, and I will be having them every 3-4 months on my year of chemo. The drugs I will be taking can further reduce and potentially damage my heart function. I do not like this one bit. I do not want to feel like, act like or be treated like an invalid during this little cancer adventure, so I'm going to be asking some precise questions about exercise tomorrow. I still want to move mountains.
 |
| "For me, life is continuously being hungry. The meaning of life is not simply to exist, to survive, but to move ahead, to go up, to achieve, to conquer." - Arnold Schwarzenegger |
Second, I had a PET/CT scan from skull to thigh. It was not exactly a trip to the spa, but it wasn't horrible. There is a smoothie to drink. Vanilla was lovely. People apparently have mixed feelings about the berry, so I'm glad I picked it. I was covered in warmed blankets, injected with a radioactive isotope, and left to relax in a darkened room in a comfy recliner for 45 minutes. No texting or reading, since your brain gets to have glucose first and we don't want a false positive. No exercising the day before either, because the muscles love having sugar to workout the lactic acid and repair the fibers. No, the only thing we wanted to feed that vanilla barium-sugar smoothie to was cancer cells. Cancer cells love glucose and if the other priority glucose functions (brain activity, significant muscle repair) are not occuring, the cancer cells will gobble that sugar up before healthy cells. The PET CT is very sensitive, so we are hoping that if there is anything that is detectable, the scan will show it. After marinating in my radioactive isotopes for 45 minutes, the scan itself only took about a half hour, about 10 minutes for CT and 20 minutes for PET. It is two scans done on the same machine, and they overlay the images after you are done with both. You lay extremely still, wrapped like a pig in a blanket, while an automatic bed tray moves you in and out of a tiny hole in this enormous white machine in a very chilly room. I had my warm blankets though, so I was fine. There were times where I literally felt like the blood vessels in my head or hands were moving, as if magnetized, when the machine would pass over. I left feeling a bit gassy and headachey, but after some breakfast and water I was ok later that day, just tired.
Why this test? The PET CT is looking for metastasis of cancer any place else. While cancer typically shows up first in the lymph nodes (and mine were clear under ultrasound), it could go elsewhere. Cancer cells can travel by lymph vessels or by blood vessels to sites far away from the original mass. Given the way I feel about my odds, I don't want to leave anything to chance. If we can see whether the cancer has gone elsewhere, I want to see it.
Results should be available to my doctors by this evening, so we'll see what they have to say tomorrow.
22nd vial of blood; Changing up old stress relieving habits
Sunday I had my 22nd vial of blood drawn since starting on this journey at an appointment for fertility. This is how every blood draw goes in my head. Bahhhhh. I am so over this already.
Many of my usual stress relieving activities are out the window, some temporarily, some maybe permanently. These include lifting ridiculously heavy things, enjoying red wine and indulgent carbs, staying up late watching tv, and over-caffeinating. I am working on alternatives, but between the changes to my routine and the fertility hormones, it is a little bit crazy. Needless to say, Josh has been a saint this week.
Lifting ridiculously heavy things. I tweaked my back a few weeks ago, probably because I was pushing myself too hard in the gym, fearing this diagnosis was coming. Right after, I saw my wonderful friend and chiropractor, Dr. Jenn Davis, and of course, she helped me tremendously. Instead of feeling too broken to pick up my own purse for 6 weeks like most lower back sprains go, I felt pretty good this past week. I went to CrossFit Balance to do Thursday's workout with my dear friend, Julie. I had the best intentions of not pushing myself too hard and taking it easy on my back, but of course, with about 2 minutes remaining in my whole bout of activity, I felt that uneasy feeling of my back saying, "Hey you - shouldn't have done that!" So, back to Dr. Jenn Davis, and I am now feeling mostly better. My coach and smarter, wiser human being, Quint Fischer of CrossFit Magnus, has kindly reminded me not to be an idiot and work on bodyweight weight movements instead of twirling barbells overhead. Point taken. It's hard to let go of the addictive pursuit of personal records or "PR's" though. I feel amazing everytime I hit a new one, knowing that in that moment I am stronger than I've ever been. Bodyweight gymnastics movements have produced less exhilaration, mostly because my quest to obtain them, in particular the muscle up, has been so unfruitful. Oh well, now is the time to focus exclusively - because I have to! For lower impact cardio, I may also try out my first spin class this week and check out Maryland's aquatic facilities for a swim. Josh has also volunteered to try yoga to help balance my very yang CrossFit activities with a little more yin calm and mindfulness. I can't wait. Josh is hilariously inflexibile, so I am looking forward to the togetherness and the comic relief. The important thing is to just keep moving, right?
Vino. I love red wine. I like its complexity, its velvety mouthfeel, and that each bottle seems to have its own personality. I don't drink to excess, but I have indulged in more than one at the end of a tough day or out socially with friends. At this point though, I'm over it. This table of studies summarized by Susan G. Komen puts it plainly - in over 40 studies, having more than 2 glasses of wine resulted in a statistically significant increase in breast cancer risk. I'm not saying I won't ever have another drop, but there are too many other things I care about to continue relying on this as a way to routinely self-soothe. I just don't need it. I've bought myself a case of San Pelligrino in real glass bottles instead. Drinking it reminds me of the wonderful summer I spent in Italy with my sister Elizabeth.
Carbs. Many of the oncology nutrition resources I've read include a very USDA-approved type plan with pro-whole grains- like Johns Hopkins and Harvard. On the other hand, some of the studies I looked at suggested that a ketogenic diet could be helpful in retarding tumor growth, especially if the food is high quality more like very low carb Paleo than the fake-food-is-ok Atkins model. It looks like something the medical community is actually trying to get more data on, e.g., this clinical trial. Supposedly tumor cells only grow well on glucose, whereas a healthy cell can run easily and well on either glucose or ketones. I am a big fan of science, and I don't mind turning myself into a lab rat. If limiting myself to 30g of carbs a day could potentially be helpful, as I wait on this fertility cycle to go through before my chemo can start, then why wouldn't I? It doesn't seem to hurt and it might help, so I'm doing it. Diets to Go has a low carb plan that might make this easier, but right now I'm doing it myself. Approximately 10% carbs, not more than 25% protein or about 94g (since apparently the liver can turn protein into glucose), and 65% fat or about 108g. Still, when I am sad and raging on hormones, all I want is a cookie. :-( Time to turn to other things!
Staying up late and watching TV. Orange is the New Black, Scandal, House of Cards, Game of Thrones, Intelligence, Suits, Orphan Black. I watch all these shows as a form of late night escapism. The problem is I have occassionally sacrificed sleep. I have always been a night owl, but adult life and the 9-to-5+ workday doesn't match that rhythm very well. This study in particular caught my eye. There is probably a study out there that "proves" every nut job's hypothesis, and I am not blaming myself for getting cancer, but on the other hand, I am absolutely committed to doing everything I can to maximize my health and prospective outcome. Sleeping more is maybe not as much fun as watching the next episode of Orange is the New Black, but it probably matters much more to my long-term health. After the fertility treatments are over, I am going to talk with my oncologist about including melatonin in my list of supplements. My sleep issues have already been noted on this blog. The other cancer-initiated supplement I plan to add to my long list is tumeric or curcumin with an absorption aid like bromelain or bioperine. My Uncle Tom and Aunt Linda take it, and I am convinced by the number of legit studies out there, of which these are just a few, that it is very likely to help and unlikely to cause any harm. Modern medicine may not find it of sufficient impact to get written down on a doctor's script, but incrementally better is still better.
Coffee. Starbucks is my happy place. It is like adult Walt Disney World to me. Nothing bad every happens there. The coffee is always consistent. I know what I am getting, and the routine is a comfort. I like the taste, even black, and the warmth feels good in my stomach. I am a slow sipper, but I could down several Venti blackeyes in a day. Coffee does have antioxidants in it, and in most cases, coffee appears to reduce cancer risk rather than increase it. But, most people aren't me. I shouldn't be using coffee to get through my days when I should be napping or sleeping instead, even if I need to nap more than the average bear. I'm cutting back from 5-7 standardized cups a day to not more than 3, and I'm swapping in herbal tea where my afternoon coffees used to be. This has been a transition in the works for a while, but I'm adding it in. Someday I will learn to find tea as comforting as black, black coffee.
So that's a little list of the things I haven't been doing as much of and some of my contemplated alternatives for stress reduction. Other things I've been doing to help with the stress include talking with current and former cancer patients. Two of them I spoke with today for over an hour each. Seriously helpful tips that I will be researching a little bit more and adding into my plan as well. It really helps to speak with someone who's already been down this crazy path I'm headed down and come out just fine on the other side. Same experience speaking with my Aunt Linda the other day, who offered some really helpful tips on ports and scheduling surgeries, as well as just general wisdom from having been sent down a more challenging path than others. My Aunt Bev sent me some great web resources, and my sister-in-law Chanelle also just emailed to send her love. That has been wonderful. I am contemplating how to break the news to my larger social circle on Facebook. Hopefully after my second appointment with the oncologist on Tuesday, I will have a settled gameplan that will be easier to share.
Oh, and I also started playing Clash of Clans... it's very addictive. Beware.
This week's schedule (so far):
Monday - ECG for my heart pre-chemo baseline, PET/CT from head to thigh to check for any detectable metastesis, and picking up another syringe for fertility. (This morning's bloodwork still had my progesterone too high, so I'm being given an extra two days of injections to try to get it down from 6 to 0. 5 days and 5 shots ago it was 7. My body has a mind of its own!)
Tuesday - fourth fertility visit, first visit with a clinical social worker, first visit with a radiation oncologist, second visit with the medical oncologist. I want to meet my interventional radiologist before I let him or her cut me, so I'm going to try to get that on the calendar this week too.
Wednesday - figure out DEERS and TRICARE updates. I've never had many issues that required one insurance policy, much less two, so double insurance should be a real adventure.
 |
| Pre-Blood Draw # 22 |
Lifting ridiculously heavy things. I tweaked my back a few weeks ago, probably because I was pushing myself too hard in the gym, fearing this diagnosis was coming. Right after, I saw my wonderful friend and chiropractor, Dr. Jenn Davis, and of course, she helped me tremendously. Instead of feeling too broken to pick up my own purse for 6 weeks like most lower back sprains go, I felt pretty good this past week. I went to CrossFit Balance to do Thursday's workout with my dear friend, Julie. I had the best intentions of not pushing myself too hard and taking it easy on my back, but of course, with about 2 minutes remaining in my whole bout of activity, I felt that uneasy feeling of my back saying, "Hey you - shouldn't have done that!" So, back to Dr. Jenn Davis, and I am now feeling mostly better. My coach and smarter, wiser human being, Quint Fischer of CrossFit Magnus, has kindly reminded me not to be an idiot and work on bodyweight weight movements instead of twirling barbells overhead. Point taken. It's hard to let go of the addictive pursuit of personal records or "PR's" though. I feel amazing everytime I hit a new one, knowing that in that moment I am stronger than I've ever been. Bodyweight gymnastics movements have produced less exhilaration, mostly because my quest to obtain them, in particular the muscle up, has been so unfruitful. Oh well, now is the time to focus exclusively - because I have to! For lower impact cardio, I may also try out my first spin class this week and check out Maryland's aquatic facilities for a swim. Josh has also volunteered to try yoga to help balance my very yang CrossFit activities with a little more yin calm and mindfulness. I can't wait. Josh is hilariously inflexibile, so I am looking forward to the togetherness and the comic relief. The important thing is to just keep moving, right?
Vino. I love red wine. I like its complexity, its velvety mouthfeel, and that each bottle seems to have its own personality. I don't drink to excess, but I have indulged in more than one at the end of a tough day or out socially with friends. At this point though, I'm over it. This table of studies summarized by Susan G. Komen puts it plainly - in over 40 studies, having more than 2 glasses of wine resulted in a statistically significant increase in breast cancer risk. I'm not saying I won't ever have another drop, but there are too many other things I care about to continue relying on this as a way to routinely self-soothe. I just don't need it. I've bought myself a case of San Pelligrino in real glass bottles instead. Drinking it reminds me of the wonderful summer I spent in Italy with my sister Elizabeth.
Carbs. Many of the oncology nutrition resources I've read include a very USDA-approved type plan with pro-whole grains- like Johns Hopkins and Harvard. On the other hand, some of the studies I looked at suggested that a ketogenic diet could be helpful in retarding tumor growth, especially if the food is high quality more like very low carb Paleo than the fake-food-is-ok Atkins model. It looks like something the medical community is actually trying to get more data on, e.g., this clinical trial. Supposedly tumor cells only grow well on glucose, whereas a healthy cell can run easily and well on either glucose or ketones. I am a big fan of science, and I don't mind turning myself into a lab rat. If limiting myself to 30g of carbs a day could potentially be helpful, as I wait on this fertility cycle to go through before my chemo can start, then why wouldn't I? It doesn't seem to hurt and it might help, so I'm doing it. Diets to Go has a low carb plan that might make this easier, but right now I'm doing it myself. Approximately 10% carbs, not more than 25% protein or about 94g (since apparently the liver can turn protein into glucose), and 65% fat or about 108g. Still, when I am sad and raging on hormones, all I want is a cookie. :-( Time to turn to other things!
Staying up late and watching TV. Orange is the New Black, Scandal, House of Cards, Game of Thrones, Intelligence, Suits, Orphan Black. I watch all these shows as a form of late night escapism. The problem is I have occassionally sacrificed sleep. I have always been a night owl, but adult life and the 9-to-5+ workday doesn't match that rhythm very well. This study in particular caught my eye. There is probably a study out there that "proves" every nut job's hypothesis, and I am not blaming myself for getting cancer, but on the other hand, I am absolutely committed to doing everything I can to maximize my health and prospective outcome. Sleeping more is maybe not as much fun as watching the next episode of Orange is the New Black, but it probably matters much more to my long-term health. After the fertility treatments are over, I am going to talk with my oncologist about including melatonin in my list of supplements. My sleep issues have already been noted on this blog. The other cancer-initiated supplement I plan to add to my long list is tumeric or curcumin with an absorption aid like bromelain or bioperine. My Uncle Tom and Aunt Linda take it, and I am convinced by the number of legit studies out there, of which these are just a few, that it is very likely to help and unlikely to cause any harm. Modern medicine may not find it of sufficient impact to get written down on a doctor's script, but incrementally better is still better.
Coffee. Starbucks is my happy place. It is like adult Walt Disney World to me. Nothing bad every happens there. The coffee is always consistent. I know what I am getting, and the routine is a comfort. I like the taste, even black, and the warmth feels good in my stomach. I am a slow sipper, but I could down several Venti blackeyes in a day. Coffee does have antioxidants in it, and in most cases, coffee appears to reduce cancer risk rather than increase it. But, most people aren't me. I shouldn't be using coffee to get through my days when I should be napping or sleeping instead, even if I need to nap more than the average bear. I'm cutting back from 5-7 standardized cups a day to not more than 3, and I'm swapping in herbal tea where my afternoon coffees used to be. This has been a transition in the works for a while, but I'm adding it in. Someday I will learn to find tea as comforting as black, black coffee.
So that's a little list of the things I haven't been doing as much of and some of my contemplated alternatives for stress reduction. Other things I've been doing to help with the stress include talking with current and former cancer patients. Two of them I spoke with today for over an hour each. Seriously helpful tips that I will be researching a little bit more and adding into my plan as well. It really helps to speak with someone who's already been down this crazy path I'm headed down and come out just fine on the other side. Same experience speaking with my Aunt Linda the other day, who offered some really helpful tips on ports and scheduling surgeries, as well as just general wisdom from having been sent down a more challenging path than others. My Aunt Bev sent me some great web resources, and my sister-in-law Chanelle also just emailed to send her love. That has been wonderful. I am contemplating how to break the news to my larger social circle on Facebook. Hopefully after my second appointment with the oncologist on Tuesday, I will have a settled gameplan that will be easier to share.
Oh, and I also started playing Clash of Clans... it's very addictive. Beware.
 |
| My Clash of Clans Warface! |
This week's schedule (so far):
Monday - ECG for my heart pre-chemo baseline, PET/CT from head to thigh to check for any detectable metastesis, and picking up another syringe for fertility. (This morning's bloodwork still had my progesterone too high, so I'm being given an extra two days of injections to try to get it down from 6 to 0. 5 days and 5 shots ago it was 7. My body has a mind of its own!)
Tuesday - fourth fertility visit, first visit with a clinical social worker, first visit with a radiation oncologist, second visit with the medical oncologist. I want to meet my interventional radiologist before I let him or her cut me, so I'm going to try to get that on the calendar this week too.
Wednesday - figure out DEERS and TRICARE updates. I've never had many issues that required one insurance policy, much less two, so double insurance should be a real adventure.
Saturday, June 21, 2014
Happy birthday to my best friend and wonderful husband!
Today is your special day... so glad we got to be together and enjoy good friends, good food and fun. You totally rocked that hat, babe. ¡♡!
Thursday, June 19, 2014
Pixies, bobs, and wigs
First day with no doctor appointments in a while. Just email and office work. I spent a little bit of time thinking about the hair strategy. Apparently Herceptin alone doesn't make your hair fall out. It will just be the first 18 weeks of TCHP, not the whole year of chemo that I will be bald. I still think short real hair till it falls out then short wig till it grows in again, and then just let it grow!
Day 2 injection for fertility went just fine. I met Josh at the Yamasaki Academy during jiu jitsu. The shots are supposed to be around the same time for all 4 days and we didn't think about the schedule. Fernando Yamasaki sat and talked with us for a while. He has the biggest heart, and it is open to everyone. It meant a great deal to me to have him reach out and talk with me, encouraging me and coaching me just like a fighter. And I am.
Wednesday, June 18, 2014
Surgeon is set, met with the geneticist, and first IVF injection
Met with THE surgeon today. It all looks like things are going to finally fall into place. Tomorrow I will be the subject of a breast cancer conference amongst a bunch of doctors and research nurses who will debate different courses of treatment in my case. Kind of cool! Guess my ears will be burning tomorrow morning, until my surgeon calls to give me a recap and the consensus. Below, me modeling the super cape, made like a paper towel, they give you for exams.
Met with the geneticist too. Looks like with all my family history, at most my chance of a BRCA1 or BRCA2 mutation is 4.71% without having done any tests. Given my luck with odds lately, I want to know for sure. There are 6 other genes that genetics science knows a bit about, so if BRCA comes back negative, we will check those too. Two massive vials of saliva later, my BreastNEXT test is in the mail. 2 weeks till BRCA, 5 weeks til the others.
Lastly, we got the go ahead last night to start injections for a fertility treatment to preserve eggs/embryos in case the chemo steals that from us. First injection of probably 16. Every bit as awkward as you can imagine. Rather than explain in words, we just took video... Good for a laugh!
♡
Tuesday, June 17, 2014
Back from the wedding, on to oncology!
Friday to Monday I hoped to just try to feel normal. My dear cousin in Knoxville got married to the sweetest, nicest girl. It was a Tennessee Volunteer themed wedding, and I wasn't sure how they were going to do it, but it was beautiful and classy too! The reception was at the Sunsphere and offered a 360 view of the city as the sun set. I also got to see some of my relatives on my father's side too. I loved seeing my family, and it was really important to me to be there for my cousin and his new wife's special day! It was harder than I thought to keep my own head above water. I thought I could just forget about the diagnosis, but it was almost all I could think about. I researched things the entire car ride down and back. My mom helped me a lot getting things organized.
Today, 3 appointments. Oncology, fertility, and sleep study results. The oncologist and her entire office were great. I get the sense there were some things today that made them want to get a move on. Per the oncologist's request, fertility is getting accelerated. Starting tomorrow instead of the end of the month. That means an extra injection, but at least we get to try. One cycle only. The oncologist won't allow two.
Chemo will last a year. TCHP before surgery. 3 hours once every 3 weeks for 6 cycles or 18 weeks total. After that, H continues every 3 weeks for 1 year total. I will lose my hair probably before the start of the second TCHP session. I think I will probably buzz my head and donate pre chemo hair to make a wig for someone else. Wig shopping could be fun. I'll feel like the cancer equivalent of Jennifer Garner from Alias. I want to affirmatively choose when and how to lose my hair. I don't want to wait and let it be something that happens/cancer does to me. I need a port surgically installed and an ECG. First treatment should be right around July 4, right after fertility stuff ends. That puts surgery right around my birthday November 2 ish to Veterans Day. Radiation starts about 4 weeks after, so probably by the end of the year, maybe done by Valentines Day. H or herceptin chemo through July 2015. Then hormonal therapy for 5 to 10 years.
The sleep study was to address a lifetime of general fatigue, not cancer. Idiopathic hypersomnia. There are drugs I can take to feel like a normal human being. No big deal. Probably helpful to know now to set the baseline. That way when I get chemo fatigue doctors will know it began underlying before all the drugs.
Tomorrow I have a really big day with the geneticist. I had no idea but there was a lot more family history than I anticipated. Knowing will really help me finalize surgical options.
Right back at it y'all!
Friday, June 13, 2014
FISH Analysis: HER2 +
So the FISH analysis came back today as HER2/neu positive at a ratio of 8.1. This is clearly and decisively positive. The original immunohisochemistry test done on the biopsy samples was "equivocal" at 2+, which means it was borderline. Apparently in 1 out of 4 borderline cases the FISH comes back as positive, and HER2 positive only affects 15-20% of all breast cancers. I should buy a lottery ticket. Did I mention only 0.44% of women my age get this cancer anyway? This HER2 positive is a total mixed bag. On one hand, if untreated, it means it is a much more aggressive cancer and my prognosis is not as good as if it were negative. I haven't actually looked at the survival rates because I think I would come completely undone if I did. It also very likely means a very long and unpleasant course of systematic chemo, where literally a toxic substance will affect every single cell in my body. Many side effects. Not fun. On the other hand, if therapy can shrink the size of the mass, I may be a better candidate for breast conserving surgery, i.e., lumpectomy and radiation. Neoadjuvant therapy can also be a better predictor of how therapies will go in general.
Dr. Sun got the results first and called me about them. A very calm, cool, collected, and intelligent response. She really is a kind smartypants rockstar. She helped me get in to Dr. Karen Smith's sooner, and she also helped me secure an appointment at Dr. Brown's, the plastic surgeon for reconstruction. Later in the day, the nurse coordinator from Sibley, Jennie called. Dr. Garber had called to check in on me. This is like the cancer equivalent of Barack Obama and Beyonce put together sending you a personal email. Amazing. We had talked earlier in the week about how to coordinate care. She called the doctors there and requested that I be seen by the most senior surgeon in the center. I don't know how I am this lucky (in such an unlucky situation).
Between the nurse coordiator at Sibley and the senior surgeon, Dr. Magnant, I am all set up for next week. Tue 8 am with the medical oncologist, Dr. Karen Smith; 11:30 am with the fertility specialist Dr. Levy to get the initial vaginal ultrasound; 2:45 pm sleep study consultation with Dr. Gross to get back results (completely unrelated and predating cancer). Wed 8 am with the senior surgeon Dr. Magnant, 4pm with the geneticist Dr. Saadeh. I also meet with a dermatologist on Friday, but it was also scheduled before this madness. You had better believe with my p53 score of >90% I will be having a full body melanoma check. I do not want to be a multiple type cancer survivor. One is enough, thank you very much. The genetics counseling may not be covered by insurance, even though it is for cancer. I still think it is a worthwhile choice. If I have both BRCA genes, it really changes the analysis for recurrence and surgery. A prophylactic bilateral mastectomy could cut my risk of getting breast cancer again by 80-90%. I don't want the mastecomy, but if I have to have it, I want it to be because I really need it.
Bloodwork for me and the dear husband is in for the fertility doctor. The phlebotomist was super excited as soon as she saw my blood, "Oooo! You must work out a lot!" because it was so red, and therefore highly oxygenated. It is truly bizarre to be so healthy and yet have cancer. I wonder if I didn't do all the health nut things I do whether I would be dead already. Probably. Guess I will keep doing them. I may give up wine and start a ketogenic diet, which potentially may stop/reduce the growth of the tumor. I also need to start working out again. I tweaked my back and haven't been in a while, and I really need to start trying harder to maintain the normal, including training.
In any event, I have some more paperwork and financial stuff to fax in. Fertility preservation is not going to be cheap, but I don't want this stupid cancer to steal any more of my future. Freezing eggs and embryoes is essentially equivalent, but Dr. Levy recommended embryos, so that is what I will do. Walgreens donates the medications to cancer patients, so that is a huge relief. Dr. Levy was also incredibly compassionate. His whole office, from nurse Jordan to financial coordinator / insurance Joan of Arc Susan to intake specialist Silvia to schduling assistant Kendra... they were all the kindest souls. It makes me truly wonder whether I should have stayed true to my initial plans to go to med school. Being a lawyer is great, and you can provide help when no one else can, but the energy and compassion is totally different in medicine, and I am incredibly drawn too it. Guess we will see how that goes once I outlast all these appointments and treatments.
The radiologist report on the breast MRI was not particularly helpful. I didn't have it done at Hopkins or Sibley, and I wonder if that was a mistake. We are waiting on Hopkins to do their own analysis on the images and also pathology on the untreated core sample slides. On the MRI, the mass showed up smaller. MRI's are really good at detecting invasive tissues, but not so good at non-invasive. Mamograms are better at that. The mamogram measured 2.7 cm at largest dimension, so that is what we are sticking with. It wouldn't be surprising to have the invasive ductal carcinoma inside or mixed in with a much larger ductal carcinoma in situ. In addition, the mamogram showed microcalcifications outside the duct and in the surrounding breast tissue. This is indicative of ductual carcinoma in situ, the stage before invasive ductal carcinoma. It means potentially that a significantly greater volume of breast tissue may be taken. If chemo zaps that as part of neoadjuvant (pre-surgery chemo), then it's possible I could still get away with a lumpectomy. I am terrified of the chemo because it is acute poison and I am terrified of the mastectomy because it could mean a long term allergy, to the plastic implant. It all sucks. We will wait to see what the oncologist says on Tuesday and the third (and most senior) breast surgeon on Wednesday.
I started researching chemo therapies, and after a tip from Josh, googled images for port a caths versus picc lines. I hysterically cried upon seeing them. Don't look, it's awful! If I have to have chemo, I'm going to let the medical oncologist break to me the bad news. To make things worse, I found out one of the very promising therapies for my situation might not be covered by insurance and it's basically the price of going to law school all over again. The plot thickens. I would hate to have to decide LITERALLY how much it may be worth for the chance to conserve my breast.
No appointments tomorrow or Monday. I'm headed to NC and TN to see my mom and then go to my cousin's wedding. I can't wait. Hopefully this whole weekend will be a great time to just pretend to be normal. I hope it will be calm. Planning cancer treatment is about 100x harder and more time consuming than it was to plan my own wedding just 2 years ago.
Lots of emails still to catch up on and people to reach out to. Things are still 100 miles a minute. Can't wait for this to be over, and so grateful for everyone's support along the way!
Dr. Sun got the results first and called me about them. A very calm, cool, collected, and intelligent response. She really is a kind smartypants rockstar. She helped me get in to Dr. Karen Smith's sooner, and she also helped me secure an appointment at Dr. Brown's, the plastic surgeon for reconstruction. Later in the day, the nurse coordinator from Sibley, Jennie called. Dr. Garber had called to check in on me. This is like the cancer equivalent of Barack Obama and Beyonce put together sending you a personal email. Amazing. We had talked earlier in the week about how to coordinate care. She called the doctors there and requested that I be seen by the most senior surgeon in the center. I don't know how I am this lucky (in such an unlucky situation).
Between the nurse coordiator at Sibley and the senior surgeon, Dr. Magnant, I am all set up for next week. Tue 8 am with the medical oncologist, Dr. Karen Smith; 11:30 am with the fertility specialist Dr. Levy to get the initial vaginal ultrasound; 2:45 pm sleep study consultation with Dr. Gross to get back results (completely unrelated and predating cancer). Wed 8 am with the senior surgeon Dr. Magnant, 4pm with the geneticist Dr. Saadeh. I also meet with a dermatologist on Friday, but it was also scheduled before this madness. You had better believe with my p53 score of >90% I will be having a full body melanoma check. I do not want to be a multiple type cancer survivor. One is enough, thank you very much. The genetics counseling may not be covered by insurance, even though it is for cancer. I still think it is a worthwhile choice. If I have both BRCA genes, it really changes the analysis for recurrence and surgery. A prophylactic bilateral mastectomy could cut my risk of getting breast cancer again by 80-90%. I don't want the mastecomy, but if I have to have it, I want it to be because I really need it.
Bloodwork for me and the dear husband is in for the fertility doctor. The phlebotomist was super excited as soon as she saw my blood, "Oooo! You must work out a lot!" because it was so red, and therefore highly oxygenated. It is truly bizarre to be so healthy and yet have cancer. I wonder if I didn't do all the health nut things I do whether I would be dead already. Probably. Guess I will keep doing them. I may give up wine and start a ketogenic diet, which potentially may stop/reduce the growth of the tumor. I also need to start working out again. I tweaked my back and haven't been in a while, and I really need to start trying harder to maintain the normal, including training.
In any event, I have some more paperwork and financial stuff to fax in. Fertility preservation is not going to be cheap, but I don't want this stupid cancer to steal any more of my future. Freezing eggs and embryoes is essentially equivalent, but Dr. Levy recommended embryos, so that is what I will do. Walgreens donates the medications to cancer patients, so that is a huge relief. Dr. Levy was also incredibly compassionate. His whole office, from nurse Jordan to financial coordinator / insurance Joan of Arc Susan to intake specialist Silvia to schduling assistant Kendra... they were all the kindest souls. It makes me truly wonder whether I should have stayed true to my initial plans to go to med school. Being a lawyer is great, and you can provide help when no one else can, but the energy and compassion is totally different in medicine, and I am incredibly drawn too it. Guess we will see how that goes once I outlast all these appointments and treatments.
The radiologist report on the breast MRI was not particularly helpful. I didn't have it done at Hopkins or Sibley, and I wonder if that was a mistake. We are waiting on Hopkins to do their own analysis on the images and also pathology on the untreated core sample slides. On the MRI, the mass showed up smaller. MRI's are really good at detecting invasive tissues, but not so good at non-invasive. Mamograms are better at that. The mamogram measured 2.7 cm at largest dimension, so that is what we are sticking with. It wouldn't be surprising to have the invasive ductal carcinoma inside or mixed in with a much larger ductal carcinoma in situ. In addition, the mamogram showed microcalcifications outside the duct and in the surrounding breast tissue. This is indicative of ductual carcinoma in situ, the stage before invasive ductal carcinoma. It means potentially that a significantly greater volume of breast tissue may be taken. If chemo zaps that as part of neoadjuvant (pre-surgery chemo), then it's possible I could still get away with a lumpectomy. I am terrified of the chemo because it is acute poison and I am terrified of the mastectomy because it could mean a long term allergy, to the plastic implant. It all sucks. We will wait to see what the oncologist says on Tuesday and the third (and most senior) breast surgeon on Wednesday.
I started researching chemo therapies, and after a tip from Josh, googled images for port a caths versus picc lines. I hysterically cried upon seeing them. Don't look, it's awful! If I have to have chemo, I'm going to let the medical oncologist break to me the bad news. To make things worse, I found out one of the very promising therapies for my situation might not be covered by insurance and it's basically the price of going to law school all over again. The plot thickens. I would hate to have to decide LITERALLY how much it may be worth for the chance to conserve my breast.
No appointments tomorrow or Monday. I'm headed to NC and TN to see my mom and then go to my cousin's wedding. I can't wait. Hopefully this whole weekend will be a great time to just pretend to be normal. I hope it will be calm. Planning cancer treatment is about 100x harder and more time consuming than it was to plan my own wedding just 2 years ago.
Lots of emails still to catch up on and people to reach out to. Things are still 100 miles a minute. Can't wait for this to be over, and so grateful for everyone's support along the way!
Wednesday, June 11, 2014
Clinical Diagnosis: Lymph Nodes Benign!
I did not sleep well at all last night. Got up this morning at 5:00am, left the house at 6:00am for Baltimore to go to Johns Hopkins', had a 1:30pm fertility appointment in Rockville that we barely made, and I was still talking with medical offices tonight at 6:00pm. What a day! I don't think I look too shabby for a cancer patient though.
Some very good news came through today. A summary of the highlights follows below:
Some very good news came through today. A summary of the highlights follows below:
- The lymph nodes are clinically diagnosed as benign!!!! Dr. Clark did feel one slightly larger lymph node on the right side through a physical exam, so she ordered an auxillary lymph node ultrasound. Ultrasound is better than either mammogram or MRI for diagnosing cancer that is in the lymph nodes because it sees the architecture of the lymph node best. A thickened cortex is bad. Mine where fine. The slightly enlarged lymph node could have been from the biopsy. Notably, ultrasound is best done in-person, rather than reading images later. It is somewhat surprising that after reading all the reports I've had done so far, that the other place didn't actually do this in the first place. In any event, I am RELIEVED that the nodes are benign. If it hasn't spread to the lymph nodes, my understanding is that it is very unlikely to have metastesized elsewhere in the body.
- Because of the ultrasound reading of the lymph nodes, I finally now have a clinical diagnosis of stage: cT2N0M0, meaning a clinical or presurgical confirmation diagnosis of a Stage 2 Tumor, with no lymph nodes and no metastasis. This clinical diagnosis has a very high survival rate, compared to higher stages. If any lymph node had looked suspicious, a lymph node biopsy prior to surgery and an auxillary lymph node dissection (taking all of them, not just the first guys in the sentinnel node biopsy) would like be required. Whew, dodged that bullet
- Two breast surgeons appear to agree on some things. The things they agree on aren't all things I want to hear, but I like that they agree. I am feeling beyond tired at the moment, so I will save all the gory details for tomorow.
- Having an IVF cycle is a brilliant idea, and I'm seeing a kind and smart doctor to make it happen.
Tuesday, June 10, 2014
If Xena was an attorney and a breast cancer patient....
Today was good. Good-ish. I got over the emotional shock of things and reclaimed my very precise, thorough, and rational decision-making self from the grief and shock of the initial diagnosis. I was worried this weekend that I would be too emotional to ask good questions or make good decisions for myself, but I'm over it. I did what I needed to do today and asked the questions I needed to ask. Back to being "Xena"... at least more Xena than Gabrielle.
This morning started with a breast MRI at 6:45am. The injection contrast was weird and felt like a foreign substance floating in my body for hours afterwards, but other than that, things went fine. The radiation tech, Richard, was awesome. I was feeling kind of overwhelmed with details and choices, so I let him pick the music. The first song he chose for me was Icona Pop's I Love It. I did love it! I hear this song on my playlist at the gym all the time, and it transformed my attitude from helpless patient, where cancer was something that happened to me, back to fighter, master of choices, director of my own fate. It's been quite the change. I'm just ready to handle business and get this done. I got all of my records before I left the MRI place, although I now know it will take the radiologist a day or two in order to read the 1000s of images taken during my MRI.
Later in the morning, I got a recommendation for a surgeon and oncologist in my area from a world-renowned highly regarded expert far from my home, and that expert was kind enough to offer their personal cell phone number and spend quite a while talking with me about what to expect, what to look for, and additional options I might have in selecting a coordination team. In essence, it all starts with the surgeon. Based on that advice, I called and declined another oncologist appointment that had come up. I don't want to waste people's time by being unprepared, but it is really hard because I don't know what I need, and I don't know who to talk to in what order. The expert helped explain coordination of care, so breast surgeon first it is!
By luck, I actually got in to see a surgeon today. Not the first I asked for, but a very highly regarded one, who was recommended as one of "either" of the two choices. There wasn't enough time for anyone to join me, so I went alone. At the time, I was still worried that I would be too emotional to make typical "Allison decisions," logical, precise, and thoroughly analyzed. No problem. I was at the breast surgeon's for 3 hours, 15 minutes of which were paperwork and another 15 minutes of physical exam. I asked a ton of questions, not even realizing the time elapsing. Happily I was the last appointment of the day, and the surgeon offered me all of her time until day's end, which was a real gift.
The surgeon I saw today, Dr. Bonnie Sun at Sibley, was also brilliant. I can easily see how she must have impressed past professors with her consistently precise textbook answers. I don't know if she ever taught class, but she kindly and clearly corrected me whenever I repeated an answer of hers that I misunderstood. At one point, she asked me what I did for a living, and when I told her I was an attorney, and I'm sure all my probing questions likely made sense to her then. It's not that I deposed her as a hostile witness, but I am an exceptionally thorough question-asker. In many areas, I did my best to get to a precise answer in quantitative terms rather than qualitative terms. I don't want to know "more," "better," "less," smaller." I want to know "90%," "objectively positive," "less than X cm." In my assessment, she resisted my push towards these more quantitative terms, perhaps as a good doctor or medical expert should, but I still craved that level of certainty. Even after asking her questions for 2.5+ hours, I still have things I'd like to ask and that remain unanswered. This seems to be the nature of the beast.
As a result of today's breast surgery consult, I have more information, some good, and some not so good. I do not yet have a settled gameplan, because there are still pending tests and reports I need:
[By the way, the levels here are my own application based on way too many years of schooling in the law. It's just how I process information. It probably means nothing to doctors, and nobody reading this blog should take what I say here as anything other than a narrative of my own personal experience.]
The second level analysis is of three factors that predict the "personality"of the tumor, beyond the mere physical characteristics described above.
The H2N status, if negative would be the best possible prognosis (i.e., not dying) for this tumor profile. If it is positive, I will definitely have chemo. Apparently this gene if over expressed in the tumor (as opposed to in all my cells), is associated with a much more aggressive type of cancer. And we can't have that.
The third level analysis was not good, to the extent known:
The two basic surgical options are lumpectomy + radiation and masectomy, and surgically, sentinel lymph node biopsy and/or auxillary lymph node dissection are considered after that.
Notably, it is possible that the tumor has grown "tentacles" into the breast tissue surrounding the duct. Tumors don't grow neatly. That could affect the total size taken out by surgery by volume in order to achieve clear margins, but it depends on the radiologist's assessment. Basically, I am not a very good candidate for lumpectomy right now, although it could be done with a suboptimal cosmetic result if I really insisted on it.
Good news:
I left our appointment with referrals to the medical oncologist, plastic surgeon, and genetic counselor, and an affirmation to go for the fertility appointment.
Tomorrow will be another opinion with a surgeon, this one at Johns Hopkins' "big house," as well as with the fertility doctor. I still have a long way to go, but I feel so much better having things rolling along and starting to settle in place.
A quote to leave you with that's been on my mind the last few hours and is my intention for tomorrow:
Thank you all for everything so far. I really feel uplifted by the outpouring of support.
This morning started with a breast MRI at 6:45am. The injection contrast was weird and felt like a foreign substance floating in my body for hours afterwards, but other than that, things went fine. The radiation tech, Richard, was awesome. I was feeling kind of overwhelmed with details and choices, so I let him pick the music. The first song he chose for me was Icona Pop's I Love It. I did love it! I hear this song on my playlist at the gym all the time, and it transformed my attitude from helpless patient, where cancer was something that happened to me, back to fighter, master of choices, director of my own fate. It's been quite the change. I'm just ready to handle business and get this done. I got all of my records before I left the MRI place, although I now know it will take the radiologist a day or two in order to read the 1000s of images taken during my MRI.
Later in the morning, I got a recommendation for a surgeon and oncologist in my area from a world-renowned highly regarded expert far from my home, and that expert was kind enough to offer their personal cell phone number and spend quite a while talking with me about what to expect, what to look for, and additional options I might have in selecting a coordination team. In essence, it all starts with the surgeon. Based on that advice, I called and declined another oncologist appointment that had come up. I don't want to waste people's time by being unprepared, but it is really hard because I don't know what I need, and I don't know who to talk to in what order. The expert helped explain coordination of care, so breast surgeon first it is!
By luck, I actually got in to see a surgeon today. Not the first I asked for, but a very highly regarded one, who was recommended as one of "either" of the two choices. There wasn't enough time for anyone to join me, so I went alone. At the time, I was still worried that I would be too emotional to make typical "Allison decisions," logical, precise, and thoroughly analyzed. No problem. I was at the breast surgeon's for 3 hours, 15 minutes of which were paperwork and another 15 minutes of physical exam. I asked a ton of questions, not even realizing the time elapsing. Happily I was the last appointment of the day, and the surgeon offered me all of her time until day's end, which was a real gift.
The surgeon I saw today, Dr. Bonnie Sun at Sibley, was also brilliant. I can easily see how she must have impressed past professors with her consistently precise textbook answers. I don't know if she ever taught class, but she kindly and clearly corrected me whenever I repeated an answer of hers that I misunderstood. At one point, she asked me what I did for a living, and when I told her I was an attorney, and I'm sure all my probing questions likely made sense to her then. It's not that I deposed her as a hostile witness, but I am an exceptionally thorough question-asker. In many areas, I did my best to get to a precise answer in quantitative terms rather than qualitative terms. I don't want to know "more," "better," "less," smaller." I want to know "90%," "objectively positive," "less than X cm." In my assessment, she resisted my push towards these more quantitative terms, perhaps as a good doctor or medical expert should, but I still craved that level of certainty. Even after asking her questions for 2.5+ hours, I still have things I'd like to ask and that remain unanswered. This seems to be the nature of the beast.
As a result of today's breast surgery consult, I have more information, some good, and some not so good. I do not yet have a settled gameplan, because there are still pending tests and reports I need:
- Radiologist's analysis from the MRI - this expert analysis lies in the art of interpreting the images, in part based on familiarity with the machine and being able to discern "artifacts" that are a product of the way the image is taken (like a double exposure on an old school film camera) verus a reflection of things that are actually there, whether artery, lymph node, or something else. Since I only had the MRI this morning, it should be available hopefully in the next day. I wish I had known this, because I would have either worked harder with the radiology place or been more comfortable with an appointment with the surgeon later this week. I'm still glad I know, but if it were me giving a patient advice, I'd want to have all the cards on the table. The good news is that from what even I could tell from the raw images we had today, the left breast is totally fine. The right breast only has one tumor, but the surgeon pointed out that tumors don't always grow nice and neat, and the tentacles emanating from that mass could significantly change the volume of tissue that might need to be removed in either of my potential surgery options. More on that in a minute.
- FISH analysis from pathology - My HER2 or H2N, depending on which acronym you choose, is equivocal at 2+. Additional analysis called FISH is apparently required to determine whether I am negative or positive. While I did get a lot of data looking at the report today, this is another major piece I need to know.
- Type of cancer: Invasive ductal carcinoma, with ductal carcinoma in situ. "in situ" means in place; "invasive" means it has moved out of the ducts and is showing up in nearby tissue. Clearly, the worse type gets top billing, so that's why invasive ductal carcinoma gets top billing.
- Grade: moderate differentiation. The cells have mutated, but they still look and act somewhat like their original, normal selves. Middle of the road.
- Size: 2.7 cm. This is apparently "not small" in comparison to my breast tissue size. I'm a 34E / DDD, and despite being sized out of Victoria's Secret, that is still considered small in breast surgeon world. A 10 cm tumor is considered large, but I got the sense that 5 cm was also not small. A tumor less than 2cm would give me much better options according to the standard of care. Oh well. It is what it is.
- Nodes affected: Again, we are waiting on the radiologist's analysis of the MRI, but it didn't look like it to a layman. This would be very good. If any node is infected, it changes surgery and potentially chemo options.
- Metastases: Typically the "sentinel node" or first node in the lymphatic drainage system will get hit first, so if there is no cancer in any nodes, then it is unlikely to have metastaized, meaning spread to other organs. If the sentinel node is affected, more testing would likely need to be done.
[By the way, the levels here are my own application based on way too many years of schooling in the law. It's just how I process information. It probably means nothing to doctors, and nobody reading this blog should take what I say here as anything other than a narrative of my own personal experience.]
The second level analysis is of three factors that predict the "personality"of the tumor, beyond the mere physical characteristics described above.
- Estrogen receptor status = Positive in >90%
- Progesterone receptor status = Positive in >75%
- HER2/neu or H2N status (H2N is what she called it and is likely more correct and complete, but HER2 is what you see often on websites, so I am including both) = +2, equivocal, more analysis needed through FISH, awaiting results from CBL Path in the next day or so.
The H2N status, if negative would be the best possible prognosis (i.e., not dying) for this tumor profile. If it is positive, I will definitely have chemo. Apparently this gene if over expressed in the tumor (as opposed to in all my cells), is associated with a much more aggressive type of cancer. And we can't have that.
The third level analysis was not good, to the extent known:
- Ki67 - 50-70%. This deals with the rate of growth of the tumor. Apparently anything over 20-25% is considered high. Thus, mine is BAD. It will take talking with the medical oncologist to figure out how bad, but in any event, I shouldn't waste time. Thank goodness I found it and took steps to do something about it.
- p53 - >90%. This is a general marker for cancer of any type, including cancers other than the breast cancer I've already been diagnosed with. Not good. I need to be careful my whole life. This may affect the decision to do chemo or not.
- Individial genetic counseling, e.g., BRCA1/BRCA2 - recommended and referral given at the appointment, but to be determined. If I were positive for both, I might be encourged to choose a more aggressive surgical option.
The two basic surgical options are lumpectomy + radiation and masectomy, and surgically, sentinel lymph node biopsy and/or auxillary lymph node dissection are considered after that.
Notably, it is possible that the tumor has grown "tentacles" into the breast tissue surrounding the duct. Tumors don't grow neatly. That could affect the total size taken out by surgery by volume in order to achieve clear margins, but it depends on the radiologist's assessment. Basically, I am not a very good candidate for lumpectomy right now, although it could be done with a suboptimal cosmetic result if I really insisted on it.
Good news:
- my tumor is far from the chest wall, so it is unlikely any pec muscle will need to be taken, maybe just the fascia if a masectomy. Tumor cells have a tough time growing through fascia, so if it has to be taken, at least it is a clean section.
- only the right breast is affected.
- only one tumor appears to be present.
- doesn't look like lymp nodes are affected, which likely also means no metastases.
- It looks like a nipple sparing and skin saving surgery is possible because the physical exam showed things moving well.
- chemo before surgery (neoadjuvant) could potentially shrink the size of my tumor to make lumpectomy a good option.
- lumpectomy and masectomy are essentially the same in terms of recurrence and survivability. Hacking off your breast won't prevent breast cancer from coming back, but you might still do it any way for other reasons.
- a lumpectomy might be possible after chemo, if the tumor shrinks to 2 cm or less. Then, only 3 cm would likely need to be taken with the goal of achieving clear margins, and no additional reconstructive work would be likely.
- a lumpectomy is a 1 hour-ish, outpatient surgery with only 1-2 weeks recovery time needed, if we can get there. Basic Tylenol is all you need after. No drains. Sleep in your own bed the same day.
- Even if a lumpectomy is off the table, I'm a really good candidate for a masectomy with implant reconstruction.
- My breasts are "nearly perfect" as is- no drooping saggy excess tissue. (Too bad that is about to change with whatever surgery I have.)
- I'll never breastfeed a child from my right breast, no matter what kind of surgery I have.
- At the current size, a lumpectomy is likely to yield a suboptimal cosmetic result, with a significant decrease in size and a noticeable indentation in the breast. This could potentially be fixed through fat grafting at a later date, but this in itself is controversial. If you just took out a tumor of crazy breast cells that didn't know what they were supposed to be, and you inject immature fat stem cells that don't know what they are supposed to be, it is kind of a gamble to see how they turn out, normal or tumor. The volume of tissue that would need to be removed at this time is about 5 cm in order to achieve a clear margin around the 2.7 cm mass. Ugghhhhhh.
- Bilateral breast reduction is not possible, because in the surgeon's words, "I couldn't make them any better."
- Not a candidate for partial breast radiation because I'm too young. Apparently women over 70 are, mostly because they won't live that long any way and the risk of recurrence with partial breast radiation is higher, so it's an acceptable risk in many of those cases. Not mine.
- Not a candidate for an organic flap reconstruction made out of my own muscle. My breasts aren't that big, and the surgery for a routine masectomy with implant reconstruction would go from like 2 hours to 8-10 hours, with microsurgery of vessels required, etc. It's possible, but probably not necessary. Besides, I do CrossFit, and I really do need my lats to do pull ups and other things. Same thing with my gracialis. I don't have muscles to spare. I use them all.
- A masectomy is going to hurt terribly badly. Real pain, real drugs, and drains for 1-2 weeks, minimum and likely a 4+ week recovery. I wouldn't even be able drive. A second surgery is likely required. I would get a tissue expander at the time of initial masectomy, which would later be replaced by an implant in a much less horrible surgery, but still surgery.
- A masectomy will always feel weird. It will never really feel like part of me.
- Because I am weird and allergic to multiple types of plastic including contact lenses and other things normally considered hypoallergenic, it's possible I will be allergic to the implant and/or the drains. (No drains in the lumpectomy though.) We may swipe a drain from the OR and borrow an implant sample to tape to my body. If I get a rash or hives, we'll know that plastic is a no-go.
I left our appointment with referrals to the medical oncologist, plastic surgeon, and genetic counselor, and an affirmation to go for the fertility appointment.
Tomorrow will be another opinion with a surgeon, this one at Johns Hopkins' "big house," as well as with the fertility doctor. I still have a long way to go, but I feel so much better having things rolling along and starting to settle in place.
A quote to leave you with that's been on my mind the last few hours and is my intention for tomorrow:
Thank you all for everything so far. I really feel uplifted by the outpouring of support.
First Business Day Since Diagnosis
Today was the first business day since I was diagnosed with cancer late on Friday afternoon.
I told my boss around 10:45am, and even though I couldn't keep back tears, he was amazing about it. Reassuring, kind and supportive. At our staff meeting at 11, I told my immediate office coworkers, since I would be relying upon them to help cover my work while I am out for appointments, treatments, and surgery. They all were also incredibly supportive and some sought me out later to offer their support. Saying the words, "I have cancer," is still a challenge for me, so I quickly left the staff meeting to join clients waiting for a cab for a meeting downtown at the Eisenhower Executive Office Building (EEOB).
I go to the EEOB regularly, what seems like once a week these days. We got there early enough beforehand that we were able to stop and enjoy a cup of coffee. Even though I've been in and out of the EEOB so many times over the last four years, I stopped and snapped this photo to share with friends. My favorite thing about the building is the staircases. The building is not open to the public, so it was nice to share one of my favorite things. In a sense, it was just like any other day going to a meeting there, but better because I was more grateful for the experience.
I spent the afternoon between the routine of my email inbox and the complete opposite of routine scheduling doctor's appointments, requesting records, and trying not to break down everytime I had to tell the person answering the phone why I was calling. Through my family and friends, I have been incredibly blessed with connections and recommendations to some great doctors.
I have a breast MRI scheduled for 6:45am at Washington Radiology. The breast MRI appointment should last less than an hour, but because it is so much more precise, it hopefully will show whether the cancer is in only my right breast or both, whether there are multiple tumors present, and whether any lymph nodes or other tissue appears to be affected. The results will guide my breast surgeon in analyzing the best courses of treatment available to me.
On Wednesday morning, I meet with Dr. Melissa Camp of Johns Hopkins for a surgical consult. This is the next step in determining my treatment plan. The gameplan for surgery (lumpectomy or masectomy, of various types), chemo, hormonal therapy and radiation choices will all start with this initial assessment. I still intend to get a second opinion, partially to affirm and partially to test whatever she may have to say. Through others, I have been given some recommendations for an incredible oncologist (chemo/hormone doc's) who I likely will also meet with very soon. The experience I've had so far with Johns Hopkins, just from people answering the phones to trying to fit me into schedules, has been nothing less than world-class. Even as I cried trying to explain why I was calling, total strangers made me feel like I could handle this and things will eventually be ok.
On Wednesday afternoon, I meet with Dr. Michael Levy of Shady Grove Fertility. Given the potential that even with the best of all game plans, that surgery could turn up surprises, I want to be sure that the game plan takes into account my desire to preserve my fertility options. Dr. Levy actually called on Saturday to check in. I spoke with his assistant today and with the oncology coordinator, both of whom were people who talked with me and helped me through my questions as if we were already dear friends. As long as the hormones and/or delay do not impact my cancer treatment options, I think going ahead and going through a collection cycle to freeze my eggs will help me be more confident in choosing whatever post-surgery options I may have to face. I would happily trade cancer appointments right now for prenatal checkups, but hopefully that will still be in the cards for me someday.
This Friday, I travel to my cousin's wedding. He and his wife-to-be are precious people, and I want them to have their special day unblemished by any of my dark cloud worries, so I am doing my best to share with friends individually and keep it off of Facebook for a while. There will be a time and place for that, but not right now.
CrossFit Balance has been a huge part of my life over the last four + years. I make time to coach and train there, and CrossFit keeps me sane. I was assistant coaching the evening classes tonight, which helped ground me in a tiny bit of normalcy. I was able to share my news with Danielle, Pablo and a few of the members/friends late this evening. CrossFitters give great hugs! I already feel so loved with support I knew was there all along. I hope to share more broadly with CrossFit Balance community in the coming week, after the risk of Facebook rain clouds on my cousin's wedding day have passed.
Now that I have all the appointments in place, it is starting to get easier to tell people "I have cancer," because I can move right into what I am doing to BEAT cancer. The helplessness I felt this weekend and Monday morning is starting to be replaced with more certainty about the process, buoyed up by the support of others.
I didn't get home from coaching till later in the evening, but when I arrived, my husband was talking on the phone with the mother of one of the kids whom he coaches jiu jitsu at the Yamasaki Academy. Fernando Yamasaki had asked her to call my husband, to also help him through this process. She just had her last treatment, for the very same type of cancer I have. As I listened to her story, and as I recalled the story of another survivor who shared with me today, I felt a calmness growing. This will be okay. I can do this. People will help me when I fall. I heard her explain how she already felt her life was different and her perspective changed. I thought back to earlier in the day, taking that picture, and feeling just a little more gratitude than I did before cancer. I can already see how I'm looking at the world just a little bit differently too.
I told my boss around 10:45am, and even though I couldn't keep back tears, he was amazing about it. Reassuring, kind and supportive. At our staff meeting at 11, I told my immediate office coworkers, since I would be relying upon them to help cover my work while I am out for appointments, treatments, and surgery. They all were also incredibly supportive and some sought me out later to offer their support. Saying the words, "I have cancer," is still a challenge for me, so I quickly left the staff meeting to join clients waiting for a cab for a meeting downtown at the Eisenhower Executive Office Building (EEOB).
I go to the EEOB regularly, what seems like once a week these days. We got there early enough beforehand that we were able to stop and enjoy a cup of coffee. Even though I've been in and out of the EEOB so many times over the last four years, I stopped and snapped this photo to share with friends. My favorite thing about the building is the staircases. The building is not open to the public, so it was nice to share one of my favorite things. In a sense, it was just like any other day going to a meeting there, but better because I was more grateful for the experience.
I spent the afternoon between the routine of my email inbox and the complete opposite of routine scheduling doctor's appointments, requesting records, and trying not to break down everytime I had to tell the person answering the phone why I was calling. Through my family and friends, I have been incredibly blessed with connections and recommendations to some great doctors.
I have a breast MRI scheduled for 6:45am at Washington Radiology. The breast MRI appointment should last less than an hour, but because it is so much more precise, it hopefully will show whether the cancer is in only my right breast or both, whether there are multiple tumors present, and whether any lymph nodes or other tissue appears to be affected. The results will guide my breast surgeon in analyzing the best courses of treatment available to me.
On Wednesday morning, I meet with Dr. Melissa Camp of Johns Hopkins for a surgical consult. This is the next step in determining my treatment plan. The gameplan for surgery (lumpectomy or masectomy, of various types), chemo, hormonal therapy and radiation choices will all start with this initial assessment. I still intend to get a second opinion, partially to affirm and partially to test whatever she may have to say. Through others, I have been given some recommendations for an incredible oncologist (chemo/hormone doc's) who I likely will also meet with very soon. The experience I've had so far with Johns Hopkins, just from people answering the phones to trying to fit me into schedules, has been nothing less than world-class. Even as I cried trying to explain why I was calling, total strangers made me feel like I could handle this and things will eventually be ok.
On Wednesday afternoon, I meet with Dr. Michael Levy of Shady Grove Fertility. Given the potential that even with the best of all game plans, that surgery could turn up surprises, I want to be sure that the game plan takes into account my desire to preserve my fertility options. Dr. Levy actually called on Saturday to check in. I spoke with his assistant today and with the oncology coordinator, both of whom were people who talked with me and helped me through my questions as if we were already dear friends. As long as the hormones and/or delay do not impact my cancer treatment options, I think going ahead and going through a collection cycle to freeze my eggs will help me be more confident in choosing whatever post-surgery options I may have to face. I would happily trade cancer appointments right now for prenatal checkups, but hopefully that will still be in the cards for me someday.
This Friday, I travel to my cousin's wedding. He and his wife-to-be are precious people, and I want them to have their special day unblemished by any of my dark cloud worries, so I am doing my best to share with friends individually and keep it off of Facebook for a while. There will be a time and place for that, but not right now.
CrossFit Balance has been a huge part of my life over the last four + years. I make time to coach and train there, and CrossFit keeps me sane. I was assistant coaching the evening classes tonight, which helped ground me in a tiny bit of normalcy. I was able to share my news with Danielle, Pablo and a few of the members/friends late this evening. CrossFitters give great hugs! I already feel so loved with support I knew was there all along. I hope to share more broadly with CrossFit Balance community in the coming week, after the risk of Facebook rain clouds on my cousin's wedding day have passed.
Now that I have all the appointments in place, it is starting to get easier to tell people "I have cancer," because I can move right into what I am doing to BEAT cancer. The helplessness I felt this weekend and Monday morning is starting to be replaced with more certainty about the process, buoyed up by the support of others.
I didn't get home from coaching till later in the evening, but when I arrived, my husband was talking on the phone with the mother of one of the kids whom he coaches jiu jitsu at the Yamasaki Academy. Fernando Yamasaki had asked her to call my husband, to also help him through this process. She just had her last treatment, for the very same type of cancer I have. As I listened to her story, and as I recalled the story of another survivor who shared with me today, I felt a calmness growing. This will be okay. I can do this. People will help me when I fall. I heard her explain how she already felt her life was different and her perspective changed. I thought back to earlier in the day, taking that picture, and feeling just a little more gratitude than I did before cancer. I can already see how I'm looking at the world just a little bit differently too.
Sunday, June 8, 2014
I Have Breast Cancer
On Friday, June 6, 2014, I was diagnosed with breast cancer. I cried, then called my family and my husband's with our sad news, starting each conversation straight to the point, "Do you have a minute? I have something to tell you... I have breast cancer."
Just telling family has already been emotionally exhausting. Everytime I say the words, "I have cancer," my heart breaks at even hearing the sound. There are so many people I know who want to help me, support me, and love me through this process. In a sense, we will all travel this journey together, and I want to let people in and be there for me, to share updates and news, and to crowdsource some of the hardest decisions I will face in my life - about choosing a breast cancer care team, treatment options, and survivor support approaches.
Three weeks ago, I was doing a self exam, which I infrequently do and stopped doing as regularly after the AMA changed and recommended against it (kind of angry about this, since maybe I would have caught it earlier had I continued). I felt a lump and upon further inspection noted that it did not have smooth borders like a muscle knot or cyst. I waited till after my period to see if that would change or go away, but it did not. In high school, I thought I would go to medical school, but for various reasons I ended up being a lawyer. I interned with a pathologist at a women and children's hospital. Dr. Tucker once said that the five deadliest words in the English language are "Maybe it will go away." Those words came back to me from my past ringing strong and clear as a bell. I scheduled a physical with my general physician since I was due for one anyway. She felt the lump too and ordered a breast ultrasound.
The rest of the details are in the message below I sent my immediate family on Friday night... before spending the rest of the evening drinking a bottle of wine and just crying my heart out with my husband. I am 32, married to a loving husband, and we hope to have children someday. I am also an avid CrossFitter and coach with so many goals and dreams, with working out as my main source of stress relief. It terrifies me that this diagnosis will change my everyday life forever, although I want to keep things normal as much as possible, as long as possible, without neglecting what I need to do to beat this. Yesterday, I went to brunch with friends and tried to deal with the reverberations of stress that had been building for weeks but hit me like an emotional tsunami with that one phone call on Friday afternoon. I have done some research, but mostly, I am still just trying to breathe.
I don't know what I'll do with this blog yet, but for the ripples of folks across my social support network and those of my loved ones, hopefully this will allow me to reach out and share more with you all, without having to break my own heart over and over again everytime I say those horrible words that I never thought I would have to say. Thank you for your understanding in allowing me to share this journey with you in this way.
Here's the email I sent Friday night:
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Just telling family has already been emotionally exhausting. Everytime I say the words, "I have cancer," my heart breaks at even hearing the sound. There are so many people I know who want to help me, support me, and love me through this process. In a sense, we will all travel this journey together, and I want to let people in and be there for me, to share updates and news, and to crowdsource some of the hardest decisions I will face in my life - about choosing a breast cancer care team, treatment options, and survivor support approaches.
Three weeks ago, I was doing a self exam, which I infrequently do and stopped doing as regularly after the AMA changed and recommended against it (kind of angry about this, since maybe I would have caught it earlier had I continued). I felt a lump and upon further inspection noted that it did not have smooth borders like a muscle knot or cyst. I waited till after my period to see if that would change or go away, but it did not. In high school, I thought I would go to medical school, but for various reasons I ended up being a lawyer. I interned with a pathologist at a women and children's hospital. Dr. Tucker once said that the five deadliest words in the English language are "Maybe it will go away." Those words came back to me from my past ringing strong and clear as a bell. I scheduled a physical with my general physician since I was due for one anyway. She felt the lump too and ordered a breast ultrasound.
The rest of the details are in the message below I sent my immediate family on Friday night... before spending the rest of the evening drinking a bottle of wine and just crying my heart out with my husband. I am 32, married to a loving husband, and we hope to have children someday. I am also an avid CrossFitter and coach with so many goals and dreams, with working out as my main source of stress relief. It terrifies me that this diagnosis will change my everyday life forever, although I want to keep things normal as much as possible, as long as possible, without neglecting what I need to do to beat this. Yesterday, I went to brunch with friends and tried to deal with the reverberations of stress that had been building for weeks but hit me like an emotional tsunami with that one phone call on Friday afternoon. I have done some research, but mostly, I am still just trying to breathe.
I don't know what I'll do with this blog yet, but for the ripples of folks across my social support network and those of my loved ones, hopefully this will allow me to reach out and share more with you all, without having to break my own heart over and over again everytime I say those horrible words that I never thought I would have to say. Thank you for your understanding in allowing me to share this journey with you in this way.
Here's the email I sent Friday night:
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Dear family,
I talked with all of you tonight. While my heart is heavy with the thought of the path before me, I am a fighter and I am a survivor. I will conquer this like anything else. I wish I had been dealt a better hand, but I will play the hand I've been dealt.
I have invasive ductal carcinoma and ductal carcinoma in situ. Cells are
intermediate grade. Pathology reports both estrogen and progesterone positive receptors, which is a good thing because I am more likely to respond to hormonal therapy. The mass is 2.7 cm at 11 o clock in the upper outer quadrant near my right arm pit. 2.7 cm is close to a walnut but smaller than a lime. The borders are not well circumscribed, which is bad. On the other hand, the mass is far from the chest wall and does not indicate at this point that it has invaded other tissue or my lymph nodes. I found it through a self exam, scheduled a physical with my GP, was referred for an ultrasound and ended up having that and a mammogram. They ordered a biopsy, which I had on Wednesday. The pathology results came back this evening. I called my GP and left a message and called radiology and requested my film and records.
My next step is a breast MRI and a consultation with a breast surgeon. A breast MRI will look at both breasts to see if the cancer is only in the right or both and if the lymph nodes or other tissues are affected. The breast surgeon will recommend a lumpectomy or mastectomy. Radiation is highly likely, but chemo depends on whether it has spread. It doesn't look like that now but we literally may not know till surgery.
I want the best care possible. I am already emotionally exhausted from just telling folks, but I start researching more tomorrow. I want to preserve my fertility options. Josh and I want a family someday.
I want both Western and Eastern medicine to contribute to the best care possible. Anything that is backed by science is fair game.
I want to consider the chance of recurrence/longterm prognosis, fertility, length of recovery, and best cosmetic result in selecting a surgery option.
I am committed to beating this aggressively and quickly. The pain scares me though.
Mentally, things are rough, which is to be expected. I feel deep sadness, grief, and anxiety about the path ahead. I also feel pride in my health choices, that I found this and did what I needed to do. I also feel deep gratitude for the love and support you have already showed me. I know there are others I need to call who are ready and waiting to help, but I am too exhausted for this evening.
I love you all so much. Already, when I look at my life I can see I have lived hard, but maybe not well. I have done much, tried hard, and worked my ass off. At the end of the day, it is people who matter to me. I love you, deeply, with all my heart, even when I wasn't there. If anything, the gift of this experience / lesson I am supposed to learn is how much time with family matters. I miss you and I want to see each of you more.
I fully expect the next few weeks and months to suck, but I will conquer it all. With you by my side, I feel invincible. A call, a text, an email, your positive thoughts... all that will help support me. No gesture is too small. I will try to keep you informed of what I know. Please feel free to forward to others who can help me or who will love and support you as you travel this journey with me.
Tomorrow the fight continues, with research. I love you all.
Thank you,
Allison
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