Dear Newest Breast Cancer Friend,
Welcome to the club you never wanted admission to. I know it's a scary time for you. When those bastard cells betray you and the clinician tells you "It's Breast Cancer" there are many things you want to know, many things you think you know, and many things you should know.
Your path is your own. Some people have double mastectomies, some people
have lumpectomies, some people have no surgery at all. Some folks have
radiation, some have chemo, some have hormone treatment and some have it
all. Find a surgeon and oncologist that you have faith in. Trusting the
information you are being provided is very important. It is also important to look for quality in your research. Yes, you want to weigh your options, but make sure you are using a trusted source. Preferably your information and resources should come from your medical team, but if you are going online I recommend breastcancer.org, cancer.org or drsusanloveresearch.org and not some crazy internet blogger. Reading about every single scenario can make a scary time even scarier. If you find you can't keep yourself off the internet, try not to do your research in the middle of the night when your overtired. It can lead to you misreading and misinterpreting information and keep you awake longer than you need to be.
Recently, the folks at Cure Forward reached out to me to let me know about their new service to help build a cancer community around "precision medicine". Their idea is to help folks with cancer to tailor their cancer treatment around the genetics of their cancer. As someone who had her tumor tested multiple time for it's DNA (the PRESENT study just retested the level of the HER 2 in my tumor {which is kept where?} because they developed another, better test for the HER 2 expression) this sounds like a fascinating idea. It also is something I feel like other people should be able to have. My oncologist looked at the genetic profile of my tumor and was able to determine that it was intermediately aggressive and that helped her make the decision to provide me with only 4 rounds of chemotherapy and not more (for which I am very grateful). Here is a Boston Globe article with more information about the company which appears to be a great platform for connecting cancer fighters to the proper scientists.
Our Mother's raised us to be strong, independent women. That is all
fine and dandy, but get ready for everyone you've ever met reaching out
to you and offering help, kindness, encouragement or anything they can.
At first, the hardest thing can be accepting help from other people, but
do it. Let them all help, in whatever way you want or need. Hold
on to all the cards and letters that people send you. I tacked them to
my wall and when I was having a down day, I would read as many as I
needed to get that smile back on my face. It often only took one. Or find other ways to get to your happy place; your favorite music or a gratitude journal can help you keep a positive attitude and keep you happy.
You're going to laugh more often than you think. A sense of humor goes ridiculously far in cancer treatment. As a Breast Cancer patient it can sometimes feel like there is a continuity of indignities that testing and examination provides. If you can look at your new scar and quote Monty Python ("It's merely a flesh wound") or hear the Star Wars version of "Call Me Maybe" in your MRI you'll find the entire process more bearable. Who care's what other people think. You do you. Whatever works for you and makes the process easier, do it. Having cancer allows you to be selfish, in order to fight you have to put you first.
Enjoy, and celebrate, the smallest of victories. "I completed my MRI today!". "I didn't make my Mother cry today!" "I woke up!" "I finally got that weird taste out of my mouth". Celebrate each milestone by doing something for yourself. I celebrated in a variety of different ways: running, eating treats, baking, buying myself Red Sox tickets.
Now hurry up and wait. Things can move agonizingly slow in the beginning. Remember, everyone needs a path and things will move once you have a starting path. Paths of care in cancer treatment are very flexible; your plan will morph and change as you work your way through treatment. The more data that is collected about your specific cancer will change the way you are being treated.
We're rooting for you. Go kick ass.
Sara
Monday, October 26, 2015
Tuesday, October 13, 2015
The Penultimate Super Quad
In celebration of Breast Cancer Awareness Month I decided to turn my right quadriceps hot pink for a couple of days....
Friday was the next to last round of shots for the PRESENT trial. My 2.5 year shots. 2.5 years. Holy Crap! that's some pretty good progress.
Blood, Sweat and Urine
The appointment started out in the usual way. Blood work. This time they only required 4 tubes. Only four. Even more progress. The nice tech drawing blood got it flowing with a single stick. Things were going swimmingly. I give my usual urine sample and wait for the result to come back.
The test results come back and for the first time in a long time I do not have perfect labs. My oncologist lets me know that I am anemic. Hmmm, perhaps eating a mostly vegetarian diet and meat only twice a week did have some repercussions.
She asks me how my energy level is, I tell her that I am less tired than I was in July and that I think running in the morning helped. We talked about reflector vests and head lamps. She was totally going to try a head lamp for her morning runs.
After a physical exam, where she continues to monitor the spot in the scar that annoys her and hasn't changed in the past 6 months, I'm cleared to get my shots.
The research RN and I go into the infusion room where she has booked a chair for the shots and we wait for the new research pharmacist to bring the shots up. And then we wait some more.
And then she shows up to let me know that they screwed up in the compounding of injections and they had to throw out one of the four shots. She said they could re do them if I wanted or I could just get the three and file a breech in protocol.
I looked at the research pharmacist in disbelief. These are cancer vaccine shots. Why would I want to violate protocol? I already caused a side effect. I asked the research pharmacist to re do the shots. She agreed.
The research RN knew I must be hungry because we were now an hour past when my appoint was supposed to be over. She brought me cookies and water to tide me over.
And then we waited and waited and they finally brought up four syringes. And they forgot the needles. Um...did study protocol change? Should I inject them into my mouth now?
The intradermal needles are finally located. The research RN could not apologize more. And then she started injecting me and she was apologizing more. Friday the injections were like long slow bee stings. And my leg started to swell and puff pretty quickly after (as it usually does).
The return of Super Quad
That night and most of the next day I looked like I had a quad implant on my right thigh. I found spandex to the most comfortable pants for the day, but they very much accentuated the difference between the two legs. I may or may not have obsessively compared my two thighs through out the day.
By Sunday the super quad was down to a slightly inflamed quad and was less pink. By Monday all the swelling was gone and the four injection sights are just itchy and discolored. And that's the way it remains today.
Being a test subject in a clinical trial to help prevent the recurrence of breast cancer, now that's one way to celebrate the Boob-tober.
Friday was the next to last round of shots for the PRESENT trial. My 2.5 year shots. 2.5 years. Holy Crap! that's some pretty good progress.
Blood, Sweat and Urine
The appointment started out in the usual way. Blood work. This time they only required 4 tubes. Only four. Even more progress. The nice tech drawing blood got it flowing with a single stick. Things were going swimmingly. I give my usual urine sample and wait for the result to come back.
The test results come back and for the first time in a long time I do not have perfect labs. My oncologist lets me know that I am anemic. Hmmm, perhaps eating a mostly vegetarian diet and meat only twice a week did have some repercussions.
She asks me how my energy level is, I tell her that I am less tired than I was in July and that I think running in the morning helped. We talked about reflector vests and head lamps. She was totally going to try a head lamp for her morning runs.
After a physical exam, where she continues to monitor the spot in the scar that annoys her and hasn't changed in the past 6 months, I'm cleared to get my shots.
The research RN and I go into the infusion room where she has booked a chair for the shots and we wait for the new research pharmacist to bring the shots up. And then we wait some more.
And then she shows up to let me know that they screwed up in the compounding of injections and they had to throw out one of the four shots. She said they could re do them if I wanted or I could just get the three and file a breech in protocol.
I looked at the research pharmacist in disbelief. These are cancer vaccine shots. Why would I want to violate protocol? I already caused a side effect. I asked the research pharmacist to re do the shots. She agreed.
The research RN knew I must be hungry because we were now an hour past when my appoint was supposed to be over. She brought me cookies and water to tide me over.
And then we waited and waited and they finally brought up four syringes. And they forgot the needles. Um...did study protocol change? Should I inject them into my mouth now?
The intradermal needles are finally located. The research RN could not apologize more. And then she started injecting me and she was apologizing more. Friday the injections were like long slow bee stings. And my leg started to swell and puff pretty quickly after (as it usually does).
The return of Super Quad
That night and most of the next day I looked like I had a quad implant on my right thigh. I found spandex to the most comfortable pants for the day, but they very much accentuated the difference between the two legs. I may or may not have obsessively compared my two thighs through out the day.
By Sunday the super quad was down to a slightly inflamed quad and was less pink. By Monday all the swelling was gone and the four injection sights are just itchy and discolored. And that's the way it remains today.
Being a test subject in a clinical trial to help prevent the recurrence of breast cancer, now that's one way to celebrate the Boob-tober.
Monday, October 5, 2015
Making Strides Against Breast Cancer Boston 2015
Mom and I did the American Cancer Society's Making Strides Against Breast Cancer walk this past Sunday. It's a great event that raises money for research, support programs for patients/survivors and support to families of cancer patients. I also enjoy that they have a Survivor tent that you can visit and get a sash to wear while you walk. As you walk the volunteers always shout out when the see a survivor. It's fun. It's also great to see all the fellow survivors out there. You get a lot of "nods".
My mother's favorite part is when we have completed the walk and were headed back to the subway. There are still lots of people streaming in, so we walk single file with myself in front. She enjoys watching the people discover that breast cancer affects young people too. She laughs at some of their reactions to seeing my Survivor sash. She is unable to count how many people are shocked by my age. I take comfort in my presence spreading awareness.
Thank you to everyone who came out or raised money for the American Cancer Society. I hope to see more and more Survivor sashes and less tribute t-shirts every October.
Thursday, October 1, 2015
In Celebration of Boob-tober
Welcome to October. Welcome to the pink coated month that tries to sell you everything and anything in the name of breast cancer awareness. And I present to you in celebration of breast cancer awareness month, what is new out there in the science and treatment of breast cancer.
Intraoperative Radiation Therapy (IORT)
IORT is the administration of a single dose of radiation at the same time as a lumpectomy. This means that the post op radiation treatments are not needed. It saves the patient skin damage and 30 to 33 visits to the radiation oncology suite. It also does not have the rare side effects of the radiation affecting your heart, lungs or ribs. It is also more cost effective as it costs about $3,500 less than a lumpectomy with standard radiation treatment. Did you know that nearly 1/3rd of patients don't finish their radiation treatments? I can't even imagine not finishin.
Why this could revolutionize breast cancer treatment
60% of all patients diagnosed with breast cancer have early stage breast cancer that is treated with lumpectomy and radiation. This would dramatically cut down on the length of a patient's cancer treatment. Instead of lumpectomy + time to heal + 6 weeks of radiation, it now becomes have a lumpectomy plus IORT on Monday go back to work by Thursday. That's pretty amazing.
Is it just as effective?
Here in lies the controversy. In the major study done with 1,000 patients the 5 year risk of recurrence for those who received IORT was 3.3% vs 1.3% for those who received standard treatment. That seems fairly close. However, those who received IORT were only followed for 29 months, which if my math is correct, happens to be a little short of the 60 months that make up 5 years. Also, because oncotyping doesn't occur until after the lumpectomy those patients who were found to have more aggressive cancer then received more radiation post operatively, but were included in the IORT data.
Bottom Line
Very promising change in treatment that could effect the quality of life of early stage breast cancer patients who need lumpectomy and radiation. True recurrence risk data is still needed, meaning more time is necessary. But, definitely something to keep an eye out for.
I will also be celebrating Breast Cancer Awareness month be getting my 2.5 year Vaccine or Placebo shots in my thigh. I'll be sporting a giant pink quadriceps. In the name of breast cancer science and the advancement of treatment.
Source: Beck, M. (2015, August 25). New Way to Use Radiation In Treating Breast Cancer. Wall Street Journal, p D1.
Intraoperative Radiation Therapy (IORT)
IORT is the administration of a single dose of radiation at the same time as a lumpectomy. This means that the post op radiation treatments are not needed. It saves the patient skin damage and 30 to 33 visits to the radiation oncology suite. It also does not have the rare side effects of the radiation affecting your heart, lungs or ribs. It is also more cost effective as it costs about $3,500 less than a lumpectomy with standard radiation treatment. Did you know that nearly 1/3rd of patients don't finish their radiation treatments? I can't even imagine not finishin.
Why this could revolutionize breast cancer treatment
60% of all patients diagnosed with breast cancer have early stage breast cancer that is treated with lumpectomy and radiation. This would dramatically cut down on the length of a patient's cancer treatment. Instead of lumpectomy + time to heal + 6 weeks of radiation, it now becomes have a lumpectomy plus IORT on Monday go back to work by Thursday. That's pretty amazing.
Is it just as effective?
Here in lies the controversy. In the major study done with 1,000 patients the 5 year risk of recurrence for those who received IORT was 3.3% vs 1.3% for those who received standard treatment. That seems fairly close. However, those who received IORT were only followed for 29 months, which if my math is correct, happens to be a little short of the 60 months that make up 5 years. Also, because oncotyping doesn't occur until after the lumpectomy those patients who were found to have more aggressive cancer then received more radiation post operatively, but were included in the IORT data.
Bottom Line
Very promising change in treatment that could effect the quality of life of early stage breast cancer patients who need lumpectomy and radiation. True recurrence risk data is still needed, meaning more time is necessary. But, definitely something to keep an eye out for.
I will also be celebrating Breast Cancer Awareness month be getting my 2.5 year Vaccine or Placebo shots in my thigh. I'll be sporting a giant pink quadriceps. In the name of breast cancer science and the advancement of treatment.
Source: Beck, M. (2015, August 25). New Way to Use Radiation In Treating Breast Cancer. Wall Street Journal, p D1.
Monday, September 14, 2015
Fitness over fatigue
I am attempting to win my battle against fatigue. As June and July were filled with insomnia, something good a few weeks into August starting happening. I was sleeping 6 hours consecutively with minimal disturbances. And with the ability to hold thoughts in my head again I decided to do something I hadn't done since before I was diagnosed with cancer.
I decided to run 5 days a week.
My fitness has been very inconsistent and seriously lacking since we got buried this winter. And really I haven't consistently run 5 days a week in 3 years. But, I decided to Woman up and make my fitness a priority and fatigue be damned. And achy legs and joint stiffness you should be damned too.
Before cancer (and let's be real before I really got into my 30's) I would work out for hours after work. I could run track workouts later at night and still pop out bed the next morning. But, around last December while attempting a track workout at night I was only the third interval into my workout, and although the first two intervals went well, my energy level completely bottomed out. My time plummeted and my pride hurt to read the time on the watch. I packed it in and slugged my way home. I was tired and my legs hurt and I just wanted to go to bed instantaneously. I was beyond tired. It was that workout that I realized that I couldn't sprint anymore. The last 6 workouts had ended the same way. Sometimes I am not a quick learner. I was no longer "Sara the 400 m runner". I realized that for the time being I would have to break up with organized track and field. I'm still holding out hope to return when I'm 80 and sprint once again.
Once the snow thawed, I started to try to jog part of the way home from work, with the hope of turning myself into a distance runner and being able to run the entire way home. It never happened throughout the Spring or Early summer. My legs were so stiff that I was jogging so slow it was difficult to finish my runs. It also sucked all the fun out.
This summer I ran here and there, but I let my fatigue dominant whether or not I would go for a run or go to the gym. And then I started to run in the morning. And then I fell. Twice. {Ok well in fairness I tripped over the same root twice, again not always the quickest learner}.
And then came August. I stopped falling and found a little groove running. 3 days in a row. Then 4. And by the end of August I was up running 5 days a week. I find that being able to take the weekends off has helped me recover more. And that I am less tired. And I sleep more through out the night. And I'm ok that sometimes I go to bed at 7:45 pm. I'm up at 5 am, everyday. But I get my 3 slow miles in.
But, I am running. Take that fatigue.
I decided to run 5 days a week.
My fitness has been very inconsistent and seriously lacking since we got buried this winter. And really I haven't consistently run 5 days a week in 3 years. But, I decided to Woman up and make my fitness a priority and fatigue be damned. And achy legs and joint stiffness you should be damned too.
Before cancer (and let's be real before I really got into my 30's) I would work out for hours after work. I could run track workouts later at night and still pop out bed the next morning. But, around last December while attempting a track workout at night I was only the third interval into my workout, and although the first two intervals went well, my energy level completely bottomed out. My time plummeted and my pride hurt to read the time on the watch. I packed it in and slugged my way home. I was tired and my legs hurt and I just wanted to go to bed instantaneously. I was beyond tired. It was that workout that I realized that I couldn't sprint anymore. The last 6 workouts had ended the same way. Sometimes I am not a quick learner. I was no longer "Sara the 400 m runner". I realized that for the time being I would have to break up with organized track and field. I'm still holding out hope to return when I'm 80 and sprint once again.
Once the snow thawed, I started to try to jog part of the way home from work, with the hope of turning myself into a distance runner and being able to run the entire way home. It never happened throughout the Spring or Early summer. My legs were so stiff that I was jogging so slow it was difficult to finish my runs. It also sucked all the fun out.
This summer I ran here and there, but I let my fatigue dominant whether or not I would go for a run or go to the gym. And then I started to run in the morning. And then I fell. Twice. {Ok well in fairness I tripped over the same root twice, again not always the quickest learner}.
And then came August. I stopped falling and found a little groove running. 3 days in a row. Then 4. And by the end of August I was up running 5 days a week. I find that being able to take the weekends off has helped me recover more. And that I am less tired. And I sleep more through out the night. And I'm ok that sometimes I go to bed at 7:45 pm. I'm up at 5 am, everyday. But I get my 3 slow miles in.
But, I am running. Take that fatigue.
Saturday, September 5, 2015
Blame and Empathy
After posting about practicing comfort in and dump out one of my colleagues sent me this great animation of Brene Brown, PhD explaining the difference between sympathy and empathy. My favorite part is where she explains how awful it is to say to someone "At least..." It is so natural for people to try to find the silver lining, but it is usually not helpful.
One of the concepts that get in the way of being an empathetic person is looking for someone or something to blame. Often people become so wrapped up in finding what to blame for people's problems that they can't empathize. Brene Brown totally nails it in the following video:
Who hasn't done it? Fascinating to look at it.
But, I'm not gonna lie I am still going to blame tamoxifen for a whole host of things. Maybe, I'll work on this a little bit more.
One of the concepts that get in the way of being an empathetic person is looking for someone or something to blame. Often people become so wrapped up in finding what to blame for people's problems that they can't empathize. Brene Brown totally nails it in the following video:
But, I'm not gonna lie I am still going to blame tamoxifen for a whole host of things. Maybe, I'll work on this a little bit more.
Wednesday, August 19, 2015
Practicing Comfort In, Dump Out
The LA Times Op Ed from April, 2013 titled "How not to say the wrong thing" really is one of the greatest things ever written. It helps set boundaries for people and because people often don't know what to do in a crisis it gives you an outline of what is acceptable and unacceptable to say.
The person in crisis is the center of the circle and they can complain or say anything to any of the rings. Whichever ring you find yourself in you provide comfort in and you can only complain to the rings outside of your own.
Sometimes I feel like this should be posted around the hospital. I am amazed by the things that people say to other family members. I still remember some of the inappropriate things people said to me through out treatment. People have the right to feel their feelings, but they forget the key piece that you don't have the right to share you feelings with whomever you like.
Having transitioned out of being the person in the center, helps make you better at this and a little aware that not everyone has read this article or is actively practicing "Comfort In, Dump Out". When in doubt, just listen.
And when you need to send a card send one by Emily McDowell.
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| Image Source: http://articles.latimes.com/2013/apr/07/opinion/la-oe-0407-silk-ring-theory-20130407 |
Sometimes I feel like this should be posted around the hospital. I am amazed by the things that people say to other family members. I still remember some of the inappropriate things people said to me through out treatment. People have the right to feel their feelings, but they forget the key piece that you don't have the right to share you feelings with whomever you like.
Having transitioned out of being the person in the center, helps make you better at this and a little aware that not everyone has read this article or is actively practicing "Comfort In, Dump Out". When in doubt, just listen.
And when you need to send a card send one by Emily McDowell.
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