Sunday, December 27, 2015

Happy Holidays

This holiday season has been crazy. I had something scheduled nearly every day since celebrating Thanksgiving. I am way behind in my reading for the most up to date science in the world of breast cancer. I'll make it my New Year's resolution to keep on top of it better. However, I will also resolve to continue to be present when I am with people and not choose looking at my phone, sending emails or blogging over spending time with other human beings. I will continue to be present and an active participant in life. I will continue to express my gratitude and continue to journal my gratitude periodically to keep me a happy human being.

I resolve that 2016 will be a happy, healthy year full of adventure and updating the world on the latest breast cancer research.

Until then, I have a whole bunch of Christmas cookies to eat.

Below is the Hail and Farewell from CBS Sunday morning. I was reminded while watching it this morning that we lost too great cancer advocates this past year, Stuart Scott and Lauren Hill. It does give you pause and motivation to keep making New Year's resolutions and living your life.

Thursday, December 10, 2015

Survivor Guidelines for a Survivorversary

Today is the 3 year anniversary of finishing chemotherapy. It is also the first day I have gone to work and not done something fun in the past 2 year. Unfortunately, it didn't work out with my work schedule to take today off, but I still made the most of it. And by most of it, I mean I read the new American Cancer Society/American Society of Clinical Oncology Breast Cancer Survivorship Care Guideline. Do I know how to party or what? If you too want to be party animal you can read the full text here.

These guidelines are great step towards offering more standardized care and ideally helping to increase breast cancer survivors quality of life. In literature quality of life is often abbreviated QOL and it is such an important marker. The guidelines I also found to be quite comprehensive, so let's review some of the ACS/ASCO recommendations.

Follow up in the post treatment phase, the authors recommend a detailed history and physical every 3-6 months for the first 3 years, then every 6-12 months the next 2 years and then annually every year after with your oncology team. I think this will actually help people with the sudden drop off in appointments, also, after treatment. It can be a little jarring to go from weekly/monthly appointments down to nothing. It's also nice to know that at some point the frequency of trips to the doctor does drop off. That does help with the whole QOL

For screening for recurrence, lab tests and imaging and signs of recurrence the overall recommendation is that the oncology team SHOULD NOT offer routine lab tests or imaging, besides mammography, in patients who have no symptoms. The article goes on to state that patient's should be counseled on the signs of recurrence. These guidelines do not recommend that patients have MRIs as follow ups unless they are at high risk for recurrence (such as BRCA positive), because of the tendency for the amount of false positives. I found this fascinating that an annual mammogram may be enough screening as long as your not having any symptoms. I wonder if there is hope for me and not having to drink mochaccino flavored barium once the PRESENT study is done. It didn't mention anything about CT scans.

One of the major difficulties for breast cancer survivors is to continue on their endocrine treatment, or in my case tamoxifen. These guidelines offer concrete guidelines on how to lessen the side effects and hopefully increase the compliance. Many of the ways that musculoskeletal pain and neuropathy can be combated is through exercise. The guidelines recommend:
150 minutes of moderate or
75 minutes of vigorous aerobic exercise per week
and
strength training exercise twice a week. 

So as I was reading this as I skipped my run this morning as my plantar fasciitis has flared up, but it is important to find a way to keep moving.  Moderate exercise would be walking, vigorous would be running. (For more information on the difference, see the american heart association's definitions here)

Another major side effect that puts breast cancer survivors at higher risk for recurrence is being overweight/obese. I found the statistic astounding that 61% of breast cancer survivors were overweight with 30% being obese. I hear all the time the importance of maintaining a healthy body weight and how the breast cancer treatment can make people gain weight, I just didn't realize how many were struggling with this recommendation.

The guidelines outline a basic diet that all human beings should follow without specific recommendations re:soy or flax. They recommend a diet:
High in Fruits, Vegetables, Whole Grains and legumes and low in Saturated Fat. The dietitian in me was not surprised to read this. This is the general diet that most of the world should follow. And then I got off the bus and ate a cinnamon roll. Because I'm human. (And then followed it with plain nonfat yogurt and berries, for balance) And they recommend limiting alcohol to at most 1 serving/day. Some studies have shown reducing alcohol to less than 4 servings per week to be beneficial, but there was not enough information for the authors to fully comment on that.

Many of the recommendations were for post menopausal women as they make up the largest group of breast cancer survivors, but one particular recommendation was made. A baseline DEXA scan should be done to check your bone health. Apparently, chemotherapy and long term SERM (drugs like tamoxifen) can decrease your bone density and put you at higher risk for osteoporosis. Good to know.

The other major QOL recommendation that these guidelines made was to address FOR. Fear of Recurrence. FOR is real and palpable sometimes. Some of my cancer friends are often paralyzed by it, so it is good to see it being addressed in the guidelines.

The bottom line for me
1) Keep my bottom line in check (i.e maintain a healthy weight)
2) Continue to eat a heart health diet (cinnamon rolls not withstanding)
3) Just keep running or moving or dancing
4) I need to add an additional weight lifting day in as I currently only get one
5) I'll keep taking my 1000 units of vitamin D3 daily for my bone health
6) I'll have to ask my oncologist if I should be getting a DEXA scan? (to check my baseline bone health, ugg do I really want to ask for more tests)

and most importantly

7) Don't let the FOR ruin your QOL

(I think I need a bumper sticker that says this. Except for that I don't drive. Maybe the MBTA would let me put it on my bus.)



Tuesday, November 24, 2015

Tis the Season to be Grateful

I love Thanksgiving. It combines many of my favorite things; family, food and sharing gratitude. I haven't been writing in my gratitude journal on a regular basis, but when I am having a down week I write in it for a couple of consecutive days. I also write in it when there are things happening in my life that I truly feel grateful so that when I go back and read it I can remember the feeling I had that day/week/month.

In honor of Thanksgiving I went through and found a random sampling of things I have written in the past 6 months;

4/27: Today I am grateful for CLEAN SCANS!!
You betcha. If nothing else, I will be thankful every day for my health.I have multiple entries about being grateful for modern medicine and the excellent health care team and treatment I receive. I also, continue to be grateful for all of those people who came before me and tested out my chemo, radiation and surgery. It is what drives me to continue to be an active participant in the PRESENT trial and send my blood around the country.

3/30: Today I am grateful for peanut butter
Yeah, I have a bunch of posts about being grateful for certain foods. Ginger made an appearance the past couple of weeks with my stomach issues. But, as well documented nothing tops my list more than my Mom's mashed potatoes.

8/21: Today I am grateful for my co-survivors 
Honestly, I don't remember why I was so grateful on this particular day for my friends and family, but I do remember everyday why I am grateful for such a strong support system. My co survivors are always willing to lend an ear, offer advice or continue to offer encouragement.

9/18: Today I am grateful for the anticipation of vacation 
I have been pretty fortunate to have a job that allows and encourages for ample time off in a year. I have gone to have fun with my niece a couple of times this year, took a trip to Florida with the BF and done multiple little mini trips.

6/15: Today I am grateful that baking remains a stress release 
Since last Thursday I have made 17 dozen cookies and two cranberry pumpkin coffee cakes with cinnamon streusel. I'm feeling pretty relaxed headed into the holiday. Nothing like baking with your music blaring to put you in your happy place.

Today I am grateful for keeping my gratitude journal. 
It really puts you in the holiday spirit to read all the people, things and ideas you've been grateful for through out the past 6 months. It's an excellent mood elevator.

Happy Thanksgiving!


Wednesday, November 18, 2015

Point of Reference

My heartburn/stomach issues have flared up, hard, lately. Things hadn't really got any better since I saw my oncologist at the beginning of October. Things have been particularly bad the last 3 weeks.  And by bad I mean I was only eating twice a day and often skipping dinner or chugging maalox instead of eating anything. I even busted out my dentist forbidden stash of ginger chews. About a week ago, I really had had enough. I made an appointment with my PCP in hopes to being sent to see a gastroenterologist. Unfortunately, my PCP was not available and I was sent to see her physcian assistant. Her PA was everything you could hope for in a healthcare professional. She had already read through my chart and picked out all the instances when I come in for my heartburn. She was curious if this was worse with the tamoxifen (oooh, can I blame this on tamoxinfen...wait I hope not because I have 7.5 more years to go). I explained how this has been worse since I had the 4 rounds of chemo and let her know that currently...

"I feel like I did after the fourth round of chemo"

She paused. Looked at me and stated "That is an excellent point of reference. Let's get you in to see GI. You should not feel that way". I explained that I was concerned because my blood levels had been low when I saw my oncologist and I was concerned that they might be lower. I let her know that it was just my stomach that felt like it was post chemo, and my energy level is good.  She took this all into consideration, but she sent me to have my iron levels tested again. Turns out, I am iron deficient. I am down a couple of pounds, but the new medication seems to be working. I am back eating 3 meals a day + snacks. I do not have constant burning. I am looking forward to meeting with the gastroenterologist and seeing if there is anything else I can do. And hoping that I can get my belly up and running in time for mashed potatoes Thanksgiving. I also aspire one day to not be Ralph.

Monday, October 26, 2015

To The Person Just Diagnosed with Breast Cancer

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



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.


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. 

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.



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.

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.

Image Source: http://articles.latimes.com/2013/apr/07/opinion/la-oe-0407-silk-ring-theory-20130407

 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.

Sunday, August 9, 2015

Diagnosis Day 3.0

Well, last year I claimed that I might even forget when my three years past my diagnosis day was coming around. I never believed that I wouldn't remember. But, a funny thing happens the further you  get into survivorship, you sometimes aren't anticipating the approach of the milestone date anymore. The phone call from the Nurse Practitioner and telling my family members that I had cancer, these are events that are forever ingrained in my brain. The date and time 8/8/12 at 3:30 pm are forever ingrained. But, this year it totally snuck up on me. And I think that's pretty awesome.

Earlier in the week, my mom asked me if I wanted to do something for diagnosis day. And honest to goodness, I had totally forgotten and already made plans. We weren't able to go to the lake this year, as we had already visited to see my cousin get married earlier in the summer. And I had plum forgot that Saturday was Diagnosis Day 3.0. We started to briefly reminisce about the phone call from the NP, but decided to just focus on the joy of celebrating more survivorversaries.

My plans fell through for yesterday, because life happens. But, my bf and I went to a wholesale kitchen supply store and I was like a kid in a candy store. I figured if I wasn't going to be spending the day baking to celebrate, why not purchase materials in order to further my baking endeavors?

Items purchased: new cutting board, 24 count mini muffin pan (really excited about it), ice cream sundae glasses with sturdy long spoons, reusable pastry bags, ladel, 2 pyrex storage containers (as nothing is allowed to be stored in plastic), 2 off set spatulas (why didn't I buy these sooner with all the cakes I've frosted), a new wire whisk (my old one is a little bit rusted and deformed), mini popsicle molds (because I can't control my internal thermastat) and silicon "shot" glass formers in order to make mini desserts. I'm excited to try it all. I may have gone overboard, but I'm ok with it. I was celebrating and it was all well under $100 and I do love a good bargain.

And, even though it is not pretty these days, I got my run in. It was slow, but it was beautiful weather and I enjoyed every single step over the 4 miles. What also helped make the day more enjoyable is that this week, my body decided it wanted to sleep again. While I still wake up at least once in the middle of the night (I think that is my new normal for sleep) I have been waking less and sleeping at least a cumulative 8 hours a night for the past week. I didn't start on the melatonin or anything else that I briefly discussed with my oncology NP, my body just decided it wanted to sleep again. I will take it and hope that stays for awhile.

You know what I did not forget, my cancer rally song. Fist pumping time.




Monday, August 3, 2015

I know its so vain, but.....

I'm still not sleeping great. Some nights are better than others, averaging 5.5 to 6.5 hours a night, usually not continuous, but a cumulative average. Last night was pretty good. I slept for about 5.5 hours and then after being awake for a half hour slept for another 2.5. I'm feeling pretty good today. However, with the sleep disturbances comes another pitfall;

Crazy Pants with suspenders that are very hard to take off.

Sometimes when your not sleeping well, you think bizarre things and need others to double check you. And sometimes you have a hard time moving on from things. And sometimes issues that you thought you had moved on from after 2.5 years come back to roar their ugly head.

What has this issue been for me? My hair.

Now, I kept my hair in the pixie for the past two years and then decided that I needed to feel like I had hair again and have grown parts of it out to my ears. The front however, doesn't reach behind my ears. and  I have a nervous habit of putting my hair behind my ears and have missed being able to do it with my super short hair. It's nearly there.

 Towards the end of last week I was discussing my hair with a fellow breast cancer survivor, and sister of the traveling bear. She was commenting on how she liked my hair a little longer and was then lamenting about the front of hers still 1.5 years later hasn't grown in. I assured her that she might be the only person who can notice it. We were discussing how during this little heat wave we are having she slicked her hair back into a ponytail of about 2 cm. She said her kids hated it, but she was happy to be able to do it. She suffers from the same level of heat intolerance that I do. We also touched base about the studies we are enrolled in. Her and I discussed the results of the SOFT trial and I gave her a copy of the study. She and her oncologist have decided to do ovarian suppression. She hasn't yet been given the drugs, but has told me she'll keep me posted on how it goes. We both circled back to reassure each other that our hair looked good after the science talk.

This weekend I was honored as one of my running buddies had asked me to be a bridesmaid in her wedding. She had asked if, even though I don't have much of it, I wanted to get my hair done. I responded, absolutely, as getting ready for a wedding with the bride is some of the most fun. I figured having someone else do my hair with 90 degree weather would be a win-win, not a gateway to a meltdown.

The hairdresser was lovely. She gave volume to my flat hair. Then she styled it in a way that I couldn't tuck my hair behind my ears. And it looked ok {in the interest of full disclosure it has taken me 48 hours to be able to say that}.

I sent a text to my mom with a photo of me all dressed up. And the note: My hair is horrible. She assured me I looked nice.

I met my boyfriend before the wedding to say hello. I told him my hair was awful. He told me it looked fine. I may have called him a liar.

I didn't touch my hair before the wedding. I did my bridesmaid duty, kept the bride fed, danced my face off. But, when I got in the car to go home I started the to complain about my hair. I commented about how I was worried I had ruined all the pictures with my hair (conceited much?). I woke up the next day and anyone who asked for pictures of the wedding, I told them the truth. I only took one photo because I didn't like my hair.

2.5 years after spending a winter bald I still get vain about the way my hair looks. I am grateful to have all the follicles I do but, as far as I thought I had come, my self confidence about the way I look is a little more fragile than it was before cancer.I get frustrated with myself that its still an issue for me. And as my fellow survivor friend still sees a bald spot that isn't really there, I know I'm not alone. But, we'll keep working on it. And I think a night of unbroken sleep might help too.





Thursday, July 23, 2015

Sleep Disturbances

Monday was my 27th month appointment for the PRESENT trial. This was an easy one. All they asked for was 6 tubes of blood and some urine.

In these five tubes they checked my cholesterol, triglycerides and normal basic metabolic profile. My labs came back normal and my triglycerides had improved. I found that surprising because I hadn't fasted for the test and ate mostly ice cream the day before (It was 90+ and humid, I don't cope well). So that is all good.

However, I am tired. Really tired. And I know that part of it from scheduling myself down to the second for the past 6 weeks. But, there is another large part of it.

My hormones are likely going awry.

According to the HOW study (Health of Woman) #2 Problems with Sleeping occurs in 49% of all breast cancer survivors. This is a far increase from 34% of all woman who overall list sleeping problems. Here is what happens for me. I have no problem falling asleep, but I cannot stay asleep. Last night for example I fell asleep at 8:45 pm. I then woke up at 10:15 pm. Then slept until 3:15 am. Then woke up every 10-15 minutes until my alarm went off and I went for a run. Or sometimes I will sleep until 2 or 3 in the morning and be awake for a couple of hours.

My room needs to be cool in order to sleep. I have to be able to have at least a sheet on or I will not be going to sleep. I use my sleep timer on the television like it's my job. It's quite handy to not have the tv wake me back up and I keep running. I try to run at least 4x a week, but lately its been more like 3 times a week.
And I've been reading up on some tips for menopausal symptoms. I found this article from Dr. Susan Love Research foundation that confirmed I need to keep my AC cranking.

On Monday, I dragged my ass into my appointment. The research RN asked me how I was feeling. I told her tired. She asked me about hot flashes and I told her thankfully still none. She asked me about when my thyroid was last checked. I told her April and it was normal. Then my Oncology NP came in. Her and I are quite friendly and she asked me how tired I was. She said that she noticed that I have been a lot more tired lately. She knows that I am frustrated with how slow I've been running (she and I had a brief chat after the Lahey 5K) and she asked me how I was sleeping.

Me: "Not well"
NP: "Trouble falling asleep?"
Me: "No, staying asleep"
NP: "Should we start melatonin or anything else?"
Me: "I don't want to."
NP: "Ok, but I'm going to be checking in on you"

And then she added the thyroid onto my labs. And called me an hour later to let me know it was normal.

For now, I'll make liberal use of my AC and TV. And hopefully catch a nap or two,or three.

Tuesday, July 14, 2015

Too much fun, too little reading

Sometimes in the Summer I like to do nothing, and sometimes I like to have myself so scheduled that I have no plans only one night of the week. I've been doing the latter and having a blast. However, this has put me way far behind on my breast cancer reading. Even though I'm long out of school, I still feel like I have required summer reading. Thanks to the Dr. Susan Love Research Foundation facebook page they've been keeping me updated on all the goings on in the breast cancer world. It also has demonstrated how far behind I'm getting in my reading.

Let's catch up a little.

Age of menarche may effect if breast cancer is ER positive or negative
African-American woman have a higher rate of ER negative breast cancer. This study looked at the probability of younger age of menarche and an increased rate of ER negative breast cancer. It found that it is probable that earlier age of menarche (as seen more in African American woman) can lead a woman to have ER negative breast cancer. I think this study is fascinating because it shows that the path to developing breast cancer might start when your younger. You can read the article recapping the study here.

How do we identify chemicals that can lead to breast cancer
This study looked at what methods are used to identify synthetic chemicals that could potentially lead to breast cancer. The researchers identified that a chemicals ability to damage genetic information as well as its ability to be an endocrine disruptor, were both categories that a chemical needed to be tested for. The researchers found that there were not many tests in order to identify the chemical's genotoxicity or endocrine disruptor function. The study also found that for existing methods there was not great data to back up those tests. This study concluded that better methods/tests are needed and identified places where the gaps were needed. Methods in which testing is done is important because we cannot identify causes of breast cancer if we cannot do consistent, well defined tests. A review of the study can be found here. Being able to identify genotoxic and endocrine disruptors likely has implications beyond breast cancer is well.

Just in case you needed yet another reason not to smoke...
For premenopausal woman, smoking increased your risk from dying from dying from breast cancer by a 3.4. And it was even more significant for ER/PR + cancer (like mine). Just another reason not to light up, among the hundred of thousands.

More reasons to just keep moving
Women who sit for work and also in their spare time, have hobbies that are sedentary, are 2.4 times more likely to develop breast cancer. This study followed woman over 25 years. I couldn't find the actual article but a summary can be found here. Which for me, this raises more questions about the causation of my own breast cancer, because I am hardly sedentary and a life long non-smoker. But, it is good motivation to just keep running.

Sleep quality effects long term survival in breast cancer patients
If you don't snore and sleep more than 6 hours a night your going to do better in the long run than those who snore and sleep less. Breast cancer survivors report sleep disturbances as one of the top items that effect their quality of life. It's recommended that if people are having sleep issues that they be investigated by specialists to identify the causes. Lately, I've been able to identify why my sleep has been lacking. It's called fun. But, truth be told even with all the fun the least amount I sleep at night is 6 hours. I usually aim for at least 8 and have been known to go to bed before 8 pm when I'm very tired.


Well at least that answers the pertinent question the Barenaked Ladies raised; it turns out cancer survivors need sleep.



Sunday, June 28, 2015

Lahey Health 5K 2015

Yesterday wrapped up one of the craziest weeks I had scheduled for the summer. It involved attending the New Kids on the Block concert with my best friends from the 3rd/6th grade, a surprise baby shower, hosting a wedding shower for my running buddy and the culmination of months of fundraising and bake sale-ing at the Lahey Health 5K.

This is always one of my favorite events every year. It raises money for the Lahey Health Cancer Center's and as a survivor out of the Lahey Cancer Center it's always an important date on the schedule. I've been running the race since 2012. Actually, I won the race in 2012, having just noticed that my sports bras were starting to fit funny. 2 months later I learned how much I would need the Lahey Cancer Center.

After I was officially declared NED in 2013 my colleagues and I decided that would be our team name for the Lahey Health 5K. Every year our major fundraiser is a bake sale at the hospital. Dietitian's love to bake, and as a department we really go all out. Here is our table from this year:
The philanthropy office gave us a banner to make our table more "legit". Well, to say people were generous or that our baked goods were delicious would be an understatement. We raised $1,302 from the bake sale. That's a lot of dough (terrible pun, I'm not sorry). However, my favorite donation of the day came from a gentleman with a cane who handed me all the cash he had in his pocket, $4. He apologized for such a small donation, but felt compelled to hand over his cash as his mother had passed away from ovarian cancer at the age of 49 and he knew how important the cancer center was. I smiled at him and shared with him that I was a survivor out of the center. He looked at me and burst into tears and thanked me for sharing that with him. I smiled, myself in tears at this point, and thanked him for his donation. I honestly didn't care if we raised any more money after that. There were many other folks who came to the table and didn't buy anything, but just gave donations. Many of them come, who I don't know their names, but recognize their faces, and they know I was once the bald dietitian, ask me how I'm doing and give a donation. How can you have a bad day with baked goods and generosity on display? So very grateful for all who stopped by the table that day.

Team NED is a compilation of people. Some of my colleagues and some of my friends. We decided to get T-shirts made this year. Grey and pink (I can't help myself) with Team NED down the front and No Evidence of Disease on the back. I ordered them through CustomInk.com and really can't say enough about their customer service. They noted that our t-shirts were for a charity event and even made a donation. It was really fun to match everyone who was running and walking this year. Saturday morning we laced up our sneakers and headed out to Burlington High School for the race at 8 am.
 
Well, actually, my day started much earlier than that, at 4:30 am to be exact. See I was hosting a bridal shower in the afternoon and there were cupcakes that needed frosting and crostini that needed toasting. My first round of buttercream failed, but the second batch came together nicely. I had a couple of handfulls of cereal and a fairly good amount of buttercream frosting when I got picked up to go race. In fact, I smelled like buttercream and still had some on my face when my running buddy (and bride for the shower later in the day) picked me up. When her and I headed to the line I looked at her and said, "Something pretty terrible in my GI system is about to happen". She smiled and headed to the front of the pack as she was going for the win. I hung back for the second wave of people as my legs have been heavy, filled with lactic acid and have hurt constantly while running consistently for the last 6 weeks.. And its been getting worse. I haven't been able to run faster than 9 min miles during my training runs. I thought by hanging back I would go out at a more reasonable pace. Boy was I wrong.

When the second wave was let go, I took off. My running competitiveness got the best of me and although my legs were burning just standing on the line my first mile was 7:40 minutes. Now, in years passed I would have been mad about how slow that was. This year I was mad that I went out so fast. I had just passed my oncologist out on the road, who said to me "I've been waiting for you to go past!". I told the other dietitian who was running with me to go on ahead. Once he was out of view, I vomited a small amount of buttercream and kept running. I then passed through the second mile at 7:51 minutes. There was a lot more trouble to come. I vomited some more buttercream, I walked the giant hill and then I sprinted into the finish. It is officially the slowest 5K I have ever run by 3 minutes. My legs hurt so much the entire time and I am frustrated that I am running slower now than when I was just 3.5 months of treatment. But, Team NED did produce the Lahey 5K Champion and it was great day to see everyone out there. And....I was able to pick up my third survivor shirt. They were pink this year!
We wanted people to read it says survivor

Go Team NED! 
After drinking some water and taking some team photos, I put my survivor shirt on. It's fun to give fellow survivors the nod and the woman volunteering in the snack tent had her pink shirt on and a layer of peach fuzz for hair. She asked if I wanted to pat her head, which I did. She looked at me and said "Look how straight your hair is now!" I laughed and we chatted about her upcoming Chemo perm and how my hair is slightly darker now than it was, but 2 years later the texture is exactly how it was prior to chemo. This made her smile and we went our separate ways.

Overall, team NED raised over $2,000 for the Lahey Health Cancer Centers, produced a race champion, and taught me what I already knew; buttercream frosting is a terrible pre-race meal. Overall, and this might just be the concert I went to earlier in the week talking, but I'd say Team NED has the right stuff. Thank you for all who donated, cheered and purchase baked goods. I'm grateful for you all!


Wednesday, June 17, 2015

Call to Action Update

Here's the update from the Young Survival Coalition
It looks like Senator McCain will not be seeking a vote on the amendment. For today it's a win and the DOD's Breast Cancer Research Program gets to continue. For today....

Tuesday, June 16, 2015

Call to Action!

The breast cancer advocacy world is on fire with discussion about opposition to Sen. McCain's (AZ) amendment #1482 to the National Defense Authorization Act. Here is the text :


What is concerning here is that this will do damage to the Department of Defense Breast Cancer Program. If you click on the link you can see all the other medical research that the DOD does. The vision of the DODBCRP from their website is to end breast cancer by funding innovative, high impact research through a partnership of scientist and consumers. One of the consumer advocates from the breast cancer research program is Noreen Fraser, the woman behind Stand Up 2 Cancer.

Because of sequestration the NIH has already had their funding cut; as a breast cancer survivor and individual who is participating in a clinical trial, the research world can not lose yet another source of funding.  There have been too many strides made in treatment methods and I would hate to see it stall because their isn't money to run trials.

Call to Action: go here (putting the link here in case I can't get the widget to work) to send letters to your senators today to ask them to oppose this bill!


Sunday, June 7, 2015

Happy National Cancer Survivors Day!

Today there are 14 million cancer survivors living in the United States. Today is National Cancer Survivors Day and the goal is to increase the quality of life and have healthier and happier survivors. The American Cancer Society has compiled a great list of resources here.

For me as a breast cancer survivor there are certain things that I try to do (some more successful than others) on a daily/yearly basis.

Maintain a Healthy Weight
This means keeping my BMI between 19 and 24.9. Last years visit to my PCP for my annual physical where my weight had creeped up 10 lbs since finishing treatment was a good wake up call. My weight was still within a healthy range, but if I kept eating cookies like cookie monster I was headed for 10 additional pounds each year. It helped me refocus on getting back to the 80/20 rule. Eating well for 80% of the time and allowing for whatever (cookies!) the other 20% of the time. And, it's always helpful to just keep running.

Following the 80% 
When I eat like the dietitian that I am it means 5 to 7 fruits and veggies per day. Organic if they are on the Dirty Dozen listCurrently, cherries are in season and I take about a cup with me to work every day. Ideally, I eat them in place of having chips with my lunch. But, sometimes I'll have both. I have organic or at the very least rBST free dairy, daily. Usually in the form of skim milk and fat free yogurt. And if my gut has been out of whack, I enjoy some Kefir to help re-establish my gut bacteria. Whole grains, the whole time. Even my cookies are made with white whole wheat flour. I eat mostly lean proteins: chicken, fish, chicken, chicken, nuts, peanut butter and chicken. 

At least 4 hours of exercise per week 
I've been a little more tired than I would like. I think its a combination of tamoxifen and getting older (or so I've been told). In order to keep myself from just coming home and sitting on the couch when the weather and schedule allows I've been taking the bus halfway home and then running the rest of the way. They are not the prettiest of runs, but they are getting the job done. Sometimes, however, my body is not willing to run. In order to get my "steps" in for the day I'll walk home from where I usually pick up the second bus. It takes about 30 minutes (if there is no snow!), but again I can be done working out by the time I get home.

Practicing Gratitude 
 Even though I may not write it down each day, I like to recognize something I am grateful for each day. Sometimes it as simple as as being grateful for my individual co-survivors, sometimes it is as silly as being grateful for chocolate (which is needed) and sometimes I am grateful for concepts such as supportive colleagues.

And today's daily gratitude is pretty easy. I am grateful for all 14 million of my fellow cancer survivors!

Saturday, May 30, 2015

Well, I think this is some of my best work

My surgeon was off during my month of tests. I usually see him after my mammogram, but didn't because he was off. Yesterday at 4 pm I had my appointment. I hadn't run into my breast surgeon in the hospital in awhile, so of course the day of my appointment I am behind him at the cashier in the cafeteria. When he sees me come in he says "Oh, hello again, not to worry we will make this quick".

The medical assistant takes my blood pressure, temperature, oxygen stats and heart rate. She looks at me and states "Well, that is the definition of normal." I told her I try. I'm beginning to wonder if I am the youngest patient they have had all day by about 40 years.

The medical assistant gives me a johnny to have open in the front and she logs into my account. I tell her about the large error that was in the system with the transition to the electronic medical record "Brain Surgery-Partial Mastectomy" that the endoscopy folks fixed. She gets a good chuckle out of this and tells the surgeon while I get my johnny on.

He strides in and says "So it's my brain cancer patient". I laugh and say "No, it was breast cancer just that you did the partial mastectomy in my brain". He just shakes his head. "How could that have even been an option?"

We get down to my actual appointment. He asks me about any pain. I tell him that if I haven't run or been working out for >1 week than I get some pain and that shoveling in the winter didn't feel great, but other wise I have zero pain. He is very pleased by this. I know from discussions with some of the nurse's who are also survivors that I am very fortunate to not have any pain. I had a discussion with one the other day about how she had to battle with her health insurance to go see the special lymphadema physical therapist because she has had pain and swelling in her arm as a side effect. She said it took a month to get approved, but now she finally doesn't have pain daily. She is only 10 years older than I am. A year of daily pain. I am grateful that for her it is starting to resolve.

My surgeon does his physical exam. He is super impressed with my scar. "Well, look at how minimal this is. There is only the littlest indentation. Well, I think this is some of my best work." Obviously, he is clearly disappointed with his results 2.5 years later. He looks at me and says some of my most favorite words "I'll see you in a year." Yay!

Then on his way out the door. "Keep running.". I would agree with him that my level of physical activity has likely helped me from having significant pain. It's also a great motivator to keep myself moving. And, occupational hazard, but I think my excellent nutrition has likely helped my great healing from day one. Cookies and all.

Speaking of cookies as I already celebrated with a run and some weight lifting, I think I'll do a little baking. Or maybe a lot of baking. And some more running.


Thursday, May 21, 2015

Putting Your Money to Good Use

One of the news stories that really disturbed me this week was the $187 million fraud complaint against Cancer Fund of America, The Breast Cancer Society, Children's Cancer Fund of America, and Cancer Support Services. A group of four charities that were run by family members, which used a reported 3% of their funds raised to actually help cancer patients. As this Wall Street Journal details, one of the services the Cancer Fund did provide was shipping Little Debbie snacks and sample sized shampoo. Are you even kidding me? Yes, please send me and my bald head sample shampoo. Oh and please, while I'm trying to optimize my nutrition intake please send me literal crap in plastic wrap. Then these jerks went on elaborate vacations and bought themselves fancy cars. Yes, deceiving the public and not actually helping cancer patients must be really hard work that you need to reward yourself for. These people make me angry on an entirely different level.

If you looking for worthwhile places to make donations for breast cancer funding, read this great article by Time magazine. Which mentions two of my favorite organizations: Young Survival Coalition and the Dr. Susan Love Research Foundation. The YSC provided me with a free cancer navigator (giant binder) that helped me organize and navigate through my treatment. The DSLRF's primary focus is the cause of breast cancer in order to prevent it. Via their Army of Woman I have enrolled in more genetic studies and enrolled in the Health of Woman (HOW).

Or if you are looking into if a charity is worth your donation, don't forget to check on www.charitynavigator.org. They even rank them by cause.


Sunday, May 17, 2015

Mammogram and the new Mass State Law

When you have barely size "A" boobs and a quarter of one is missing, mammogram will forever be a contact sport. I had my mammogram first thing in the morning on my last day of work before vacation. As, I am now a mammogram seasoned professional I did not put deodorant on in the am was thankful for the cool temperatures. No deodorant = better pictures (and no need to use the hospital supplied Mammo-wipes to remove it. Because I am 12, I giggle everytime I see them).

I check in for my appointment, put my pink johnny on and sit in the waiting room filling out the forms about my breast cancer history. I take the liberty to draw in my scars on the diagram for the technician. I also see a couple of women in the waiting room who also work at the hospital with me. Their faces are horrified to see me in there. I feel like I need to turn my paper over and write "Just standard follow up". But they see me looking back and all just smile and then pretend like we do not see each other. I run into one of them up on  one of the hospital floors later and she looks horrified again as I approach her, but when I start asking her questions about a patient and their plan or care I can see her relief. The majority of people in the hospital know that I am always happy to discuss all things breast health related, but I do know the time and the place.

After waiting only briefly the mammogram tech comes to get me. This time instead of a horrified look, her face lights up. She is the same mammogram tech who did my 6 month follow up mammogram when I was just starting to regrow hair. She remembers what department I work in and what side my cancer was on. I told her how impressed I was. She let me know that my age and great  attitude left an impression on her.

She gets me all set up and lets me know how she'll be looking for the metal clips I have in each breast. We do our very fun coordination of press your face against this plastic shield here, stick your butt out over there, grab the handle and pull yourself in here, now let me squeeze the boob vice and don't breathe. The don't breathe part still cracks me up; pretty sure I couldn't breathe if I wanted too. The mammogram tech also remembers me because of my pain tolerance. While trying to view my surgical clips she really needs to jack up the the pressure. I read off the machine: 12 lbs of pressure. 12! She is happy with the view and takes the pictures quickly. My skin at this point is hot pink. All I can think of is that if men had to have 12 lbs of pressure applied to anywhere on their body the method of testing would have been changed 50 years ago. She does the pictures on both sides, with significantly more photos on the right side to really capture the clips near my chest wall.

After a brief return to the waiting room, she comes back to let me know the pictures look good and I am free to go. I thank her and go to get dress. I instantly regret picking a v-neck shirt for the day. I have large red welts on both boobs and reach out to my sternum. I consider walking around with my lab coat closed all day. It takes 4 hours for the marks to go away, but knowing she got good pictures was an excellent send off to vacation.

The state of Massachusetts passed a law in  June 2014 An Act Relative to Breast Cancer Early Detection.  The purpose of the law is to notify you if you have dense breast tissue, the degree of density, why that could pose a risk for breast cancer and where to find more information. Knowing that I indeed have dense breast tissue (as I should at age 33) I was intrigued to see my letter. Well, my letter came and let me know that I have "extremely dense" breast tissue and other screening methods may be beneficial. I chuckled knowing that this was a form letter and that a CT scan and multiple physical exams were my "other" screening methods. It listed some resources if I felt I needed more follow up. I understand the purpose, as it is important for folks to know about their density and perhaps can open a dialogue with someone's PCP if it is not already there. I think it's great to make people aware of their dense breasts and hope that does lead to additional screening where warranted, because early detection is better.

There are 22 states that have passed similar laws and did you know that there are breast density advocacy groups? Neither did I until I was doing some research to see how many other states have enacted such laws. They even have a free app on itunes for dense breast folks in order to provide them information. How cool is that? But, this also makes me wonder why do we need to have state laws? Shouldn't this just be standard practice of care. Get's me fired up. Same way that some health insurances don't cover the BRCA genetic test. Nope, standard of care. Good thing we have advocacy groups.

Happy to know that me and my legally declared extremely dense breasts can continue on being NED for another year. And another year until I can see how much pressure my boobs can take in the mammogram machine. I don't want to know what kind of training that would involve.

Sunday, May 10, 2015

So it's tests then vacation

For the past two years every single time I went away for vacation I have come back and had tests or injections or blood draws to do. Every. Single. Time. After 2 weeks of testing every 3-4 days I went on vacation after. Thursday I had my mammogram (recap and insight about the new Massachusetts law to follow later) and was cleared good to go. Bruised and red and regretting wearing a v-neck, but good to go.

Let me tell you, not having any tests to think about when you go away makes for vacation x 10. It helped me savor the experience and be grateful for all of it.

I started my trip in Denver for my cousins bridal shower and my Aunt who was very excited about my being declared NED introduced me to people as a Breast Cancer Survivor. It was very fun. One of my extended family members who was there had recently been declared NED himself (Yay!). His hair had recently grown back in and had the familiar texture and curl of a fresh chemo perm. He was talking about how one side of his head has been slow to regrow. I told him for me the last portion activated was the top of my head, so I had male pattern baldness for an extra month after finishing chemo. He chuckled as this made him feel better.

Someone walked by and asked him "How are you doing? How are you feeling?"
He asked me how long it would be until people started the conversation with something/anything else. I told him that even 2 years later for some people it is still their first question, but for most it has moved to their second question. I told him the great part is that for me 6 months later I was able to not think about cancer all the time or first thing in the morning. There came a point where I realized I went two days without talking about it with multiple people. He stared at me incredulously. I laughed. I told him that I too had that reaction when a fellow survivor told me the same thing. He'll get there.

Next up on my vacation/celebration was a trip to visit my brother, sister in law and my 6 month old niece. If you ever want to feel grateful for another year of survivorship hang out with a 6 month old for the week. Watch her learn how to sit up, take her first swim in the pool, and teach her Itsy Bitsy Spider. And watch her LOVE apples. Too fun. But, spending time with her made me so grateful that their will be more milestones for her and me.

Tomorrow I go back to work. And guess what. I have zero tests, zero appointments this week. None. Hopefully, that will ease the transition back to the real world.

But, this photo will also help....

Monday, April 27, 2015

Declared NED

Phew.....

Today I reviewed the results of MUGA, CT and bone scan with my oncologist. She said they all looked great. 73% ejection fraction for my heart, meaning it is working well. CT and bone scan showed nothing! Love it!!

Before I got all the great news today I started with and EKG. Now, I don't know how to read these things but they gave me a copy to bring to the doctor. It looked like she had printed a sample. I was  pleased, especially because as the tech asked me to relax they decided to test the fire alarm system in that clinic. Very relaxing with buzzers and flashing lights. But, the end result is was as it should be. Normal EKG.

This morning the research assistant gave me a heads up that the 2 year study kit involved 7 tubes of blood. I decided to drink and extra liter of water, thanks to that heads up. Then my oncologist needed 2 tubes and I still had 3 tubes to go to my PCP for tests from my physical. So that brought the grand total of tubes of blood needed to 12. And then some urine. Well, I am happy to report my veins cooperated and one stick and she got all 12 tubes filled. We chatted for a while as my blood trickled into all of them. I think  I need a hamburger after those tubes.

Also, needed this morning was more urine. The study didn't want to take my negative HcG test from Thursday. Well, guess what it was still negative today.

The one dicey moment this morning was during my physical exam. My oncologist was pressing a lot on my scar. She found a spot that was sore when pressed really hard. She asked me if that was abnormal. I let her know that it wasn't and that it felt the same way it always does, which is slightly uneven. She also noted that my rib was right under there. We decided to move on and that clean CTs and bone scans were great news.

Flying high on the good news of clean scans the next up was the four intradermal PRESENT study shots. The research nurse continues to give me a hard time about requesting the shots to be in a perfect square, but she is always happy to oblige. The shots stung like the Dickens. She apologizes with every shot. She said she thought it was the Luekotrienes (immune booster) that burned on the injection, I told her I like to think its the actual vaccine that makes it burn. She smiled and agreed. Because neither of us will actually every know.She put some tape and gauze on it to protect the four areas. Well, by the time I got home they had swollen and busted out of the tape and had created a mega quad. I look like someone who can single leg squat 200 lbs, but only with my right leg.

Then after the injections and basking in the glow of clean scans, I realized something. I am officially out of adrenaline and holy crap on a cracker I am tired.

But, never one to pass up a chance to celebrate I wrote in my gratitude journal today "Today I am grateful for CLEAN SCANS" and then I had a pint.

Pint of gelato. Toasted Almond Gelato. To be followed by pizza. I know, what a wild woman. And I may or may not be buying myself a running gps watch, but more on that and other things to come in the next year after I sleep for awhile. Hey, maybe I'll sleep through the night. A girl can dream.

Here's to clean scans and no more mochaccino flavored anything.



Oh, and one more test this week. The full contact mammogram. I'll make sure to stretch this time.

Thursday, April 23, 2015

Mochaccino flavor, still, still ruined

Today was scan-o-rama day. It was as much fun as I anticipated.

6:43 am 
I run down my bus. It was 8 minutes early. Thankfully, I have comfy pants and running shoes on. Unfortunately, I can't have anything to eat or drink at this point and could have used some water by the time I get to the hospital. This comes into play later in the morning, but I am grateful that I drank 4 tall glasses of water before leaving for the morning.

8:00 am Nuclear Med Injection
The nuclear tech remember's me from Monday, already has the IV stuff set up to be left arm only and it takes her only one try to place the IV! Winning!! She injects me with radioactive Technetium 99-MDP (which is a bisphosphonate and why it is used in bones) and says see you in 3 hours. Good start.

8:50 am and the countdown to drinking barium 
I check in with the CT unit coordinator. Yesterday, my CT orders needed to be changed because with the recent transition to the electronic medical record at the hospital  it was listed as I didn't need contrast. I told them I was happy to not drink barium, but my oncologist insisted. However, from my description of the mochaccino flavored barium I have ruined the flavor for the research associate who manages my study case. I confirm with the unit coordinator that I am registered for with contrast and she confirms. She asks if I had lab work in the past 90 days, I tell her Feb. 2nd I had a complete panel done and my renal function is great (Thanks frequent oncology follow up!). Everything seems all set.

I go sit in the waiting room. They check if I'm wearing any metal. Nope. Ok you don't  have to get changed. I show them the IV already in my arm. Great, we'll start bringing you drinks soon. Can't wait.

Or can I.

One of the RN's from CT comes into the waiting room to get me and asks me to "Step over here" for one second. Well, that's never good. She informs me that because I never had and HcG (pregnancy) test they can't do the test. I inform her that the test will be done today and who do I need to give my urine too. She directs me to the upstairs lab and I let her know that they way her department has handled my testing is bullcrap (using a less polite word) and inform her that if I had known about the test I would have done it.

Now I run up to the blood lab. I haven't had anything to drink in 3 hours at this point time. This is when I am thankful for all the water I drank in the morning. I explain the situation to the guy at the desk and give him my medical record number of the top of my head. I get the very familiar cup and they send it to the lab stat.

 9:40 am Mochaccino time!

By the time I make it downstairs they are able to confirm that it is negative and the RN hands me a Mochaccino flavored barium drink # 1.
I apologized for being rude to her. She states that she did not find me rude and was unhappy about the patient care I was given (Only in Massachusetts would telling someone that a process was bullcrap is not rude. Perhaps that should be our new state slogan?). I was hoping this would make her only want to give me one Barium smoothie, but no such luck.

The waiting room for this year's CT scan had two other woman cancer survivors. One just had some peach fuzz and her and commiserated on all the good drugs and how it has changed our body temperatures. I had asked her if it was warm in the waiting room because I wanted to make sure I wasn't adding a hot flash to my day. We also discussed the barium process. The first one goes down so easy. She noted that was one benefit from not being able to eat before. The second one, oh the second one,  not so much. I held up my bottle next to belly and asked her if I could move the rest in via osmosis and without drinking it. The other woman cancer survivor getting her scans, chuckled greatly at this, and let us know she was happy today was a without contrast day for her.

10:15 am time to suck it up

Both woman give me the "nod" and move on to their scans and I'm left with Mochaccino Barium #2 alone on the waiting room. I have 25 minutes to complete it. I get down a third of it over the next five minutes.

I start channeling my inner Ross Geller. "Vanilla milkshake, just a vanilla milkshake"

and get down another third of the shake.

10:30 am this is not great

Ten more minutes. I attempt to get more down. I take a great big sip through the straw and at that point I am really grateful that there is no one else in the room. My entire body tries to bring the barium back up. I'm able to put my head in my hands on my knees and keep it down. My mouth is watering and I'm getting a little shaky. I keep it down and victory! I have drank 900 ml of mochaccino barium. The taste in my mouth is just foul.

10:40 am The CT scan finally!

They come and get me to do the scan. The first couple are done without the IV contrast and then comes the contrast. That familiar burning sensation where you think you may have just peed your pants (but don't). then a couple more quick scans. Then the radiology tech did on of the best things ever. She took the IV out of my arm. I told her I loved her. She told me she get's that all the time (I'm pretty sure I have made the same declaration after every CT scan). Then we both noticed that my arm was bleeding. She cleaned me up and left a bandage in place.

11:00 am Bone Scan Time

After drinking 1 cup of water and with Mochaccino flavor still prominent I head to bone scan. The radiology tech who is no more than 22 years old greets me and begins to explain the test. I smile at her and she asks if I've ever had one before. I tell her I've had 7 (only 3 were cancer related, the rest, as a runner, were for stress fractures).

The first scan is the long one 20 minutes. But it's the most exciting one to watch, once your head clears the gamma camera (say that 5 times fast). You get to see the camera pick up the radioactive isotope in your bones and put together your skeleton. I have to say my scoliosis does not appear as pronounced as it once was. I also note, that my old stress fractures don't light up. That is the extent of what I can interpret.  It also took me longer than I would like to admit to realize it was not hip bones but my kidneys that were lit up so bright. In fairness I didn't have my glasses on and could only view it out of one eye. I swear I passed Anatomy and Physiology, I swear.

The next scans are short, 3 min a piece and check my skull and ribs closely. The tech checks in with the radiologist, they are happy with all the pictures and send me on my way.

12:00 pm 

My mom picks me up at the hospital, and I start drinking water. We get home and English Cheddar and Lemon soda are my food and beverage of choice. I am fairly certain I won't be hungry for days.  The lemon soda is very helpful in finally eliminating the mochaccino flavor (not so much for eliminating the burbs).

No news is good news and my appointment with my oncologist on Monday will confirm my NED status.

For now, I'm going to go eat one of those cupcakes I made on Monday. I think I earned one.

(Also, this was the last song that I heard on the radio while heading into the hospital. There is no way things can be bad when Britney is the last thing you hear)





 
 


Monday, April 20, 2015

Every Three to Four Days

Every three to four days I have some sort of test until the grand finale of a mammogram on April 30th.
Today was my MUGA scan to make sure that I'm still having good heart function and that the vaccine is not damaging it. 

I started my Monday with the nuclear tech blowing out one of my remaining good veins in my wrist. He apologized profusely. He has been one of the few people who have ever been able to place an IV in me, so I told him really not to worry about. He placed a new IV in my elbow in under 5 seconds.

Once the IV was in Nuclear Med was able to give me the PYP prep again. Last time there was a national shortage and there was heprin and blood testing involved which extended my appointment. Today, it was just a quick injection and then 30 minutes in the waiting room and picture time. Now, sleep has been ok, but not great for me the past week. So when you are given a warm blanket and a pillow, it doesn't matter that you have leads on to measure your heart rate and a giant machine a mere centimeter from your face you take a couple of cat naps. During the three separate pictures I took naps in between the tech coming in to rotate the machine. That and me singing song lyrics with the word heartbeat in it, shocking, I know. I had this Whitney Houston song in my head and noted that when I rocked out in my head my heart rate was in the 70s.  


When I went back to napping then my heart rate was high 50's low 60's. In my unprofessional opinion the waves looked good.

I'll tell you what isn't going to help my heart. Baking. Unfortunately, baking is my stress release. Today after the scan, a full day of work, a broken down bus and a walk home in cold rain I put my pjs on and baked some more cupcakes.

Thursday is my bone scan and CT scan. I'm having a tougher time with the lead up this year than years past. I hope it is not a precedent for the future. I apologize if my posts are a little distracted, but it's not hard......oh shiney object...to do these days.

Saturday, April 18, 2015

One down, five to go

Being a dietitian, I love food. I love to eat food and I eat food often (like every couple of hours). My prep for my EGD on Friday meant that I couldn't eat any food after 8:30 pm on Thursday and I couldn't have anything but water or soda the next morning and then nothing after 11 am. This made for an interesting work day. Thankfully, most of my patients were not interested in discussing food. I wouldn't say I had the most energy ever and was fairly easily distracted, but I understood why I wasn't able to eat.

My stomach had been burning since I had my physical (9 days) so I was hoping the EGD would give us some insight.

The gastroenterologist was running late, so by the time I was taken back into the endoscopy prep area it was past my initial scope time. Both nurses I had were about my age. The first nurse is telling me about getting an IV and blood pressures and I immediately say to her "Left arm only."

She pauses and looks at me. "What's in your right arm?"
"I've had my lymph nodes out from breast cancer."

Cut to nurse trying to hide the surprise on her face. She continues to check me in and asks me what the ta...mox..if---n is for. I explain it's the medicine I take for breast cancer. Ok. She explains to the nurse who is placing my IV that I am left arm only. He recognizes me and asks if I work in the hospital. I tell him yes and that I cover the floor directly across from the endoscopy suite. He gets the IV in two tries. I assure him that that is really good for me and it usually takes more. Today, I have no bruising at all in the two sites. This man is a rock star.

Then I get a new nurse, who is wearing a Dustin Pedroia t-shirt. She is instantly one of my new favorite people. She takes a look at my history. "What? Your so young for breast cancer. Have you seen the new Massachusetts license plates? My mom is breast cancer survivor and she is the one who got them made"

We then chatted about that process, which involved signatures, legislative declarations and a lot of legwork.

Then came test time.  The physician was asking me why I was there asked me if I drank a lot of coffee or tea with caffeine. I explained to him I drank no caffeine, no alcohol. That got a little bit of a surprised face. They then rolled me into the endoscopy room. They gave me a little fentanyl and versed and I work up in the recovery room.  

But, as my test got further delayed and it ended up being nearly 21 hours since I ate, I was not the most rational person when I cam out of the test. The nurse gave me the great news. Normal esophagus, stomach and duodenum. Did they take any biopsies? No. So here is where I loose all rationality.  I repeat back to her "Nothing, they found absolutely nothing?" RN:"You seem disapointed" "Well, I'm not pleased that the constant burning in my stomach is all in my head and you proved I'm a crazy person (Yes, because a cancer survivor being disappointed about her negative test results doesn't already lend itself to that)" RN "It's not saying that. Do you want a water" She then proceeds to hand me the worlds smallest water bottle that I drink at once. Put my Dustin Pedroia t-shirt on and meet Mom in the waiting room.

My Mom knew that I wasn't enthused that the test offered no insight, but she did continue to highlight the positive. She was also chalking it up to me be Crank-asauraus Rex because of lack of food and some sedation medication. After three bites of pizza (hey if my EGD is clear, I'm eating pizza) some glucose made it to my brain and a giant smile broke out on my face. "Hey, hey Mom. How great is that that the test was negative? I am having some burning and fat intolerance but it's not damaging anything." She just looked at me and shook her head.

Looking forward to keeping the streak alive in the next couple of weeks. One test down, one more all clear issued. Next up, a MUGA (heart) scan on Marathon Monday.

Also, I ate a cup cake to celebrate. Will work for food.

Tuesday, April 14, 2015

Captain Crazy Banana Pants

My Mother called me yesterday and this is how I answered the phone:

"Captain Crazy Banana Pants Reporting for Duty"

Sometimes waiting to have all your testing is hard. I honestly do much better once it starts, but the anticipation of it can be a little daunting. I am not looking forward to drinking mochaccino flavored barium. This is the time of year where I schedule the heck out of myself and spend as much time with friends and family as possible in order to distract myself.

My schedule has looked something like this: Thursday dinner with friends, Friday asleep at 7:55 pm, Saturday day in Rhode Island with a friend and her toddler, Sunday brunch with friends and their kids, bridesmaid dress shopping for a friend's wedding in the afternoon and dinner with friends in the evening. Sunday was especially ridiculous as the only time by myself was spent riding the train/bus between events.

The past two days after work I have run part of the way home (3.5 miles) with my running back pack that I bought in December and have been waiting for clear sidewalks to use. Yesterday, even the run wasn't enough to quell the underlying anxiety, so I painted part of my deck to look like the green monster and raked my yard. Today, after my run I went to the grocery store because I was out of vanilla and it is impossible to bake without vanilla. Then I made cupcakes. I'm tired, but I think I can be like John Mellencamp and drop my middle name (Banana) and just be Captain Crazy Pants for the next couple of days.By the time I'm ready for my EGD the sedation might cause me to insist on being called The Captain. But, at least I'll have a great story!

I also am buying myself a new comfy outfit to do all my testing in. This way I can spend tomorrow evening shopping for it. Yay distraction techniques.

One thing that really is helping is the gratitude journal. It does help me to focus on all the happy, positive, fun things going on in my life. And when I jam pack my schedule it gives me lots of things and people to be grateful for.

I can't wait to write in my journal: Today, I am grateful for clean scans and negative test results.

Now, who wants a cupcake?