And it is coming.
Right now, I am still halfway in the middle of a deep mental exhale re this cancer journey. A long update post is coming. For tonight, I just wanted to leave you with this--
2014, you were a lot of heartache, tears, and pain, but also love, laughter and hope. I will not miss you.
2015, things are looking up. It's going to be our year.
Thank you to my family and friends who are the continuum between the hard times and the good. I wish you the best for this year and always.
Stitches are out. We redid steristrips on one incision, but it is OK. My range of motion without the stitches in is pretty good. I may actually have slightly better internal rotation at the shoulder, but going directly overhead hurts at about 15 degrees from vertical. No need to stretch things out or stress my incisions right now. I am still supposed to take it easy till next week when I can go back to CrossFit. Yeah, CrossFit! Per the surgeon, if it doesn't bother me, it's fine.
The post surgery telephone game on the day of was not entirely accurate, but I got the details officially today. Only one lymph node was taken, and it was clear. The wide area excision did not initially have a clear medial margin as assessed intraoperatively, so additional tissue was required all around. Happily they were able to do it while I was still under so only one tumor incision. There is a slight contour due to loss of volume, but all in all, I am pleased. The cancer is out and you can hardly tell. After the swelling goes down over the next week, and a year after radiation ends, if I want to have some tweaks made, I can. That said, even with the way things are right now, no one would ever know in a strapless dress, a sports bra or all but the skimpiest of bikinis. And, I don't wear super skimpy bikinis anyway. Radiation apparently works wonders on scars, so they should not be an issue at all!
In terms of the tumor removed, it shrank from 2.7 cm to 1.9. I did not get a complete pathological response, but I still have a lot of treatment left with radiation, Herceptin, and anti estrogen and anti progesterone therapy. We are still in a good place. At least that is what I keep telling myself. Blood flow to the tumor was good, so the chemo was really getting in there. There was no evidence of invasion into the blood/lymph vessels or nerves, which is good. I had worried that because I had a great response during chemo rounds 1-3 and no discernible improvement after chemo rounds 4-6, that my tumor had somehow figured out how to deal with TCHP. I asked if I had a recurrence whether I was likely to still respond to chemo. My surgeon laughed and assured me that yes, I would. It is kind of funny, but it is MY tumor so I would not be surprised if it figured out how to outsmart chemo. Hopefully, there will never be a recurrence.
I also asked about lymphadema prevention, and I got a referral for Dec. 1. I hope it's a non issue, and I think my surgeon thinks it's likely to be a non issue. Still, I am glad to be going. Better safe than sorry.
I am feeling pretty good, but with as much as I have been through, I am in no rush back to work. I am taking all my planned leave rather than going back early. I feel like letting myself focus on healing and trying to build back up my energy reserves before radiation begins is the right choice. I still don't have nearly the get up and go I did before chemo, and with fatigue being the most common side effect of radiation, I think it is wise not to make myself do too much too soon, even if I possibly could.
Otherwise, I am enjoying the brief warm weather and being, as best as we can tell, finally cancer free!
There was a lot going on yesterday.
5 am wake up, packed bag with button up top PJ's
5:30 am showered with Hibiclens, a 24h long lasting antiseptic, from neck to waist, as I did the night before. No deodorant or lotion allowed.
6 am departed for hospital
7 am check in on ground floor of Sibley in surgical suite, gave insurance cards and id's, signed multiple forms, given a patient number so my waiting family could check my progress on the big screen without my name up there for privacy reasons. Was led back to change into a gown, robe, and socks. Nothing else permitted. No jewelry or underwear. Urine sample taken, vitals taken, 123/75 BP and 69 HR if I remember right. Then I was led to a draped area, room 1, and my family could come back, no more than 2 at a time. Various nurses and a PA stopped in. Wendy? Linda? All lovely. One got my IV started, another got me a metallic cap to keep the heat in on my fuzzy head.
8 am Lymphatic mapping. The nurse came first and did a great job explaining the procedure Dr. Alan Crohnwall would do. The syringes came in a little kit with such little radiation (1 mercurie?) that no lead was required. The needles were tiny at 27 gauge, even smaller than the ones I used to inject my lower abdomen during the oncofertility process. They told me that people react differently and that the 4 injections do not always feel the same. The injections are made peri-auricular (?), meaning in and around the nipple at 3, 6, 9, and 12 o'clock. Injection number 2 at 6 o'clock hurt like a bee sting, but the rest were OK! Apparently this is one type of needle stick that doctors do not practice on themselves/each other. Ha! In any event, it was not nearly as bad as I imagined. No one told me I would pee blue for 24h though. My surgeon Dr. Magnant stopped by and said hello, cheerful as ever and brimming with energy.
9 am a nurse came to get me up to walk me over for the wire localization procedure. I walked across the surgical suite lobby to a room with imaging equipment. The nurse Cynthia was awesome. Very thorough and precise with the utmost compassion at the same time. Dr. Schlessinger was just the same. They double checked everything and took a time out to triple check me, my birthday and the procedure before initialling my right (correct) breast. Then we took a mammogram and compared it to the one from June. The mammogram has a grid they use to determine needle placement. I lined up at 9&3/4 and H. Next, they injected me superficially with a numbing agent, then deeply with lidocaine. Then they placed the needle. It is essentially a needle within a needle. The outside one is larger at maybe a 20 gauge, but definitely smaller than the biopsy tool. The inner needle remains in place and is about the size of an acupuncture needle, although much longer. It has a thicker section, which optimally will be placed in the tumor. Dr. Schlessinger moved the needle a little bit to get it lined up perfectly, in his words, "textbook." He was just adorable. Nurse Cynthia rubbed my back during the procedure like a baby, and at first I was embarrassed but I actually was completely grateful for it. We took two more shots vertically and horizontally to make sure it was spot on, then the big needle was removed and the inner wire was taped down. About 6" was still hanging outside my body before they taped it, so I did my best not to wiggle around or move it. Yeah, I looked. It was a little surreal to see it hanging out there from my breast, but I was glad it was set.
9:30 am The anesthesiologist and nurse stopped by. Apparently the tube doesn't go all the way down your throat, but the gas can be irritating. I had no other questions.
9:52 am I said goodbye to my sister and dad so my husband could come in.
9:59 am They started wheeling me into surgery and I shed big alligator tears as I said goodbye. In a minute, I was out. Probably because I was crying, they thought it would help me. I was just sad about saying goodbye abruptly.
11:15 am I woke up with the nurses in recovery. First, dilaudid in my IV to take the pain down from a 6/10 to a 4/10. Two blood pressure readings, two ginger ales and about 6 Graham crackers later, I got my clothes back and a nurse helped me put my clothes on from the underwear on up. An ace bandage in lieu of bra. I got two tabs of oral Percoset and was instructed to wait til 5pm to take another.
12:15 pm my family came in to see me. They told me my surgeon had said she took two lymph nodes and they both looked clear. No word on the exact size of tissue removed from the tumor area though. Josh filled my prescription for oxycodone /Tylenol and brought the car around.
12:30 pm my nurse wheeled me out, handed me a heart shaped pillow for comfort, and we headed home! Percoset knocked me out, so I had a bit of soup and then went straight to bed.
5 pm dinner, but skipped drugs, just ice
8 pm bed, ice and drugs
2:45 am got up for ice, skipped drugs
6 am ice and Starbucks with my sister, rest of the day in bed resting and occassional snacking. No drugs. Still changing ice, which helps the pain.
I am not quite ready to take off the bandage, but that is coming tonight/tomorrow morning. I am just so glad I do not feel as bad as I thought I would and nothing went wrong this time. Overall, I am so relieved to be through this. I was carrying so much stress in my body. I am almost in less pain as my muscles and joints have relaxed from relief of the stress of anticipation. I am also so glad to have another positive indicator that my lymph nodes are clear. Overall, I feel like someone took a baseball bat to my right breast. Occasionally I feel the stabbiness of pulling on stitches, so I have tried to keep my right arm range of motion limited to less than 45 degrees and very little weight. I realized that closing my own passenger side door on the Tahoe was probably too much weight for that side. When I walk, I also try to keep an even gait to avoid any unnecessary bouncing or jostling.
My game plan is to continue taking it easy and get myself healed ASAP! I have leave through Thanksgiving and Black Friday. If there is a major event on Black Friday, I will go into work, but that's it. My follow up is Monday, November 24, and I should get the results of my pathology then. Before then, I go in for a Herceptin only infusion, round 1/12, on Friday. Blargh. I can't wait for it to be over. I am already thinking about having my port taken out early so I can be done with surgery. Just so glad to be through this huge milestone though. Theoretically, I am now cancer free. A little more treatment(30 rounds of radiation, 12 rounds of Herceptin, 10 years of tamoxifen/aromatasse inhibitors to go), but the worst of it is over!
THE WORST OF IT IS OVER!
Thank you for praying for me. Thank you for sending good thoughts my way. Thank you for reaching out and for your kindness in every way. It helps, it is working, and I so appreciate it. THANK YOU.
In the lead up to surgery, I have been keeping super busy to avoid obsessing over what is coming Wednesday morning.
Josh and I spent Veterans Day weekend with my brother and sister in law in New York City and had an amazing time reconnecting, wandering through shops and markets, eating great food, watching the Seahawks game at a pro Seattle bar, and sipping whiskey and sangria against the backdrop of a live blues band.
Veterans Day, I got to spend with some very lovely ladies at the most amazing spa experience I have ever had. So relaxing!
Had a great breakfast with a friend and coffee with another.
This past weekend, I went sky diving with a dear friend and ended up being surprised with a house painting /puppy play date party with others. We also decorated for the holidays.
In days since, I swept, vacuumed and did laundry like my life depended on it.
Tuesday, I had a busy day at work and ended the day celebrating the10 year anniversary of an international agreement I worked on for 7 of those years.
All these things I am taking with me into surgery, along with the notes and calls and texts I have gotten from so many others. Thank you all.
Lastly, I listened to Leah Still's pep talk from her dad. ( http://m.espn.go.com/nfl/story?storyId=11585873&src=desktop) If a 4 year old can handle cancer surgery, so can I! #leahstrong
I just had my mri and physical. The mri did not show any improvement in the tumor or surrounding enhancements since round 3 of chemo. Very disappointing. Chemo round 4 and 6 had a reduced dose of Taxotere and round 5 was delayed a week. I stopped fasting after round 3. And, I generally felt miserable the whole time. A lot of pain and suffering for no discernible improvement. My oncologist says it could be scar tissue, but I do not believe her. The whole point of an mri is to differentiate between cancerous and noncancerous tissue based on altered metabolic rate. If it still looks like cancer, it probably is. The mass is definitely still palpable although smaller. I really wanted a complete pathological response because the survival and disease free recurrence rates are so much better. I am pretty angry actually, but what can you do?
Physically I am doing much better. My platelets are still a bit low at 134, but close enough. BP 123/76, HR 69, Ox 99%. 10# fatter than before chemo. I still have a lot of congestion but they didn't seem to care. I told my oncologist about my back outside ankle hurting before I restarted exercise. I asked her if I should be worried about rupturing my Achilles, and she said she had never had that happen to a patient. She never had an ovarian hyperstimulation patient either before me, so I am not comforted by that response. My peripheral neuropathy is still pretty bad too. Also rather than let me have Herceptin only today or Monday, she pushed it back again to next Friday. Now I will not be finished until after July 4 as I had hoped. July 9. Again, NOT happy. Between repeated delays, scheduling and computer errors, and a lack of returned phone calls, I am losing patience. Everytime I showed up for the horrible cocktail, my insurance paid them $30k. You would think that counts for something. I miss my old chemo nurse, but I am really starting to understand why she left.
The pre op physical nurse had very little information about what to expect after, although she was lovely during our visit. I walked in to the surgeon's office to ask the surgical coordinator my post surgery questions. She was getting ready to call me anyway because my surgery time got moved up. I also visited the radiation oncology office just to be sure the schedule was set.
Here it is:
Wednesday, November 19:
5:30 AM Wash skin at home with Hibacleanse for surgery prep
6:00 AM Leave home
7:00 AM Arrival and check in
8:00 AM Lymphatic Mapping Procedure aka injecting the breast ducts through the nipple with radioactive dye to see where it travels and therefore how many lymph nodes to take out during surgery
9:00 AM Wire Localization Procedure aka using radiology imaging to guide a needle into the center of the tumor so that the surgeon can make sure she takes enough out around the outside of the needle post to achieve clear margins. It is a surgical guide post.
10:00 AM Lumpectomy aka wide area excision, with sentinel lymph node biopsy (60-75m)
11:00-15AM Estimated time out of the OR, recovery begins (1h min req, est 1.5-2h) I have to be able to eat and drink a little without throwing up, use the restroom and have stable vitals before they let me go home.
12-1:15 PM Estimated time out of recovery and release to go home Get me outta there!
Friday November 21
3:00 PM Herceptin chemo infusion Round 1/12
Monday November 24
9:15 AM Surgery Follow up and Pathology report expected
Tuesday December 2
9:00 AM Radiation Simulation and Mapping
Monday December 8
TBD 6 weeks of radiation every week day, round 1/30
Each step has its own set of horrors, but it also gets me closer to done. There is no alternate route. There is only getting through. So bring it on. Let's crush this.
(Apparently I neglected to hit publish on this post drafted Friday. #latergram)
Crazy week trying to get back to normal again. Email went down at work for days, yet I still felt beyond busy at work and home. I finally opened like a month of mail, that I was just too tired to handle between chemo round 5, the cold, and chemo round 6. Great, right? Kind of. I had all the other "to do's" that came out of that. I am still tired. It feels like I can only manage what used to be a normal day of productivity in three or four post chemo days. The new normal. I am still doing stuff though!
I sleep a lot more now than I ever did before, which seems to be one reason why I feel like I am getting less done. I just don't have time. Looking for ways to maximize efficiency, I am paying more attention to vicious time sucks... Like a 2.5h commute home one day when the Beltway backed up due to a terrible accident. I really hate my commute even on a good day with normal conditions. It's about 50-60m then. Metro would take longer. Sigh. There seems to be no getting around that.
In the car for the last few months, I have started listening to audio podcasts of Ligonier Ministry's Renewing Your Mind with RC Sproul. It is a great way to distract from the driving, think about things and be open to some heavenly guidance. One on Monday really struck me, starting with these verses, "Dear friends, do not be surprised at the fiery ordeal that has come on you to test you, as though something strange were happening to you" and "So then, those who suffer according to God’s will should commit themselves to their faithful Creator and continue to do good." I heard it the day after hearing Brittany Maynard eventually did take her own life, and of course after struggling with finding the (a!?!) purpose behind my own suffering as well.
Brittany's death made me sad and honestly a little bit angry. Ok, so she was 29 with inoperable cancer, certain to die a slow and unglamorous death. Being 29 doesn't make you special. Neither does dying. We all are going to die. Most people do not get to choose, and usually, cancer aside, death doesn't come announced. Death is not pretty or glamorous for anyone. It is death! We are programmed to die. Even at the cellular level (and as explained in this awesome article on barbell training as medicine, a minor tangent), death is a part of life.
This is where that first verse comes in. Do not be surprised! Suffering is the norm, not the exception. People suffer in different ways, just as they die different deaths, but it is normal. You don't get to skip it. Brittany did and called it death with dignity. I disagree. She argued that she should not have to suffer. I disagree. She argued that there was no purpose in her suffering. I disagree. Sometimes, the purpose of suffering is to suffer. I wouldn't wish it on anyone. I would cry my eyes out if Brittany's diagnosis were given to me. But, we don't get to choose. We are not in control. There is a plan and a purpose, but not necessarily what we have in mind.
What is beautiful and has dignity is fighting to stay alive and being grateful for what we have. I used to have trouble feeling grateful. Sometimes I still do. I hate this stupid cancer and wish I didn't have it. It is pretty easy for me to feel grateful now, because I have gotten to see up close and personal what it is like to not have it.
Every day I wake up and don't feel like vomiting before I get out of bed is a great day. You never would believe how grateful you can be for normal poop until you have missed that for a month. I wish I was kidding. When water tastes just like water, it becomes the sweetest thing you will ever taste. A normal elevator ride up to the office will bring you to tears because you have a job you are going to and you feel healthy enough to actually be there. Feeling warm sunshine on your face becomes a kiss from the universe after you have been too tired to get out of bed and even open the drapes for three days. It is easy for me to feel grateful now, because suffering showed me the alternative. Some people might disagree, but I feel sad for Brittany because she cheated herself and others of the lessons and the grace that might have been seen if she hadn't taken matters into her own hands. Yes, she was going to die, and I am lucky enough that hopefully, I am not going to die anytime soon, but I will die eventually, and that will be a part of my life I will have to accept too, just like everyone else. In the meantime, I intend to live passionately and purposefully, as much as I can.
This article is a reminder:
Each morning we awaken to receive 86,400 seconds as a gift of life.
And when we go to sleep at night, any remaining time is NOT credited to us.
What we haven't used up that day is forever lost.
Yesterday is forever gone.
Each morning the account is refilled, but the bank can dissolve your account at any time WITHOUT WARNING.
So, what will you do with your 86,400 seconds today?
Ha! When I woke up, I did not immediately reach for my anti nausea meds! I took them anyway as a precaution because moving about tends to wake the sleeping dragon in my stomach; but still, this is a breakthrough that doesn't usually come till day 10 ish. Today is day 5!!! I am PUMPED. I have some energy. This is good. I feel like I can say I have passed through the dark side of this round. Awesome. Now, 15 days to enjoy and get busy having fun before surgery on the 18th.
In other news, I saw this clip on Facebook this morning, and while it focuses on the difference between the way moms and their children see themselves, I think it applies equally to anyone. We are all our own harshest critic. What a powerful moment for us and these women to see themselves through someone else's eyes. Totally made me cry.
I had no plans for my birthday, because I didn't know what I will feel up to doing. I am totally okay with that though. Every day seems like a celebration in one way or another these days. I am taking a look at the last year and what I hope for in the coming years. On the one hand, there are things I want to do, have and see, just as in years past. On the other, I find myself swirling more around ideas of what I hope to feel and be in the future. I am also listening for hints from my future rather than trying to prescribe myself a plan. It's interesting to think about being open and ready for an unspecified question rather than a calculated end goal. A year of rebirth, rediscovery, adventure, and curiosity. I am game.
The hubs and I had a nice brunch out. I got a bit queasy, but we left quickly and I got home ok. Stayed the rest of the day in bed watching football, napping or cuddling with the dogs. I talked with family and friends by phone. I enjoyed the sight and scent of the most beautiful flowers. It was just a relaxing day. Looking forward to the next 365 and then some.
Throwback photo to my very first day in the world... I really did have more hair then!
So, I normally try to have my blood work, doc visit, and chemo all in the same day to avoid having to take lots of extra leave from work to shuttle myself back and forth to the hospital on multiple days.
This round, round 6/6 of the Horrible Cocktail of TCHP, is my last round of poison. I have 12 more rounds of H only every 3 weeks till July 2015, but it's 30 minutes of infusion time, not 6 hours. And, it will make me tired, but not flattened and destroyed. My hair should grow back, I will not have digestive drama, and it doesn't cause peripheral neuropathy. So, I have been deeply looking forward to the end of this phase.
Round 5 was rough, followed by a double tap with that cold. Between chemo, the cold, and feeling flattened, I only was in the office 2 days since Round 5. I was able to telework one week, but too beat down and scared of germs to make it in person. I was certain my platelets would delay chemo. I scheduled blood work earlier on Friday to see how far off I was, so I could tell my family whether to expect to travel for my chemo that was scheduled on Tuesday. Surprise of all surprises, the blood work was fine.
On Tuesday, I arrived at 12:18 for the doc visit at 12:30, expecting the infusion at 1:30. Since I moved my blood work to the Friday before, I did not come for the previously scheduled blood work appointment at 10/10:30 on Tuesday. I had already done it. Everything else was supposed to be left in place. Well, Josh and I were taken back for weight, BP and pulse around 1pm, but we did not see a doc (any doc) until 1:44. We did not see my doc till after 2 PM. None of the nurses were willing to stay to do the infusion, and it can't be rushed for safety reasons. Also, despite me spending extra time on my make up to not look like a cancery meth face, my oncologist pointed out I looked as rough as she had ever seen me, and with as much diarrhea I had had, she wanted my Taxotere reduced to 60% again. For chemo, not on Tuesday, on Wednesday. I was unable to negotiate back to 100% or Tuesday, despite several attempts, and I have been through several successful negotiations with Israelis! I felt like I could do anything one more time, and I want all this stupid cancer gone. She assured me that the chemo would still be effective, but that she felt it unnecessary to assault my body beyond the dose that would be effective. I do appreciate that she is brutally honest, and even though I ask a ton of questions, I do believe she is right.
So, on Tuesday, my husband, my mom and my sister and I left. We hung out at the house and had an early mini birthday celebration and then went out for fajitas. They had to head home, and I went to bed early. I woke up in the middle of the night so frustrated and angry and sad. I did everything right. My blood work was fine. I was there on time, and I had already been through the anxiety of the prepping, the waiting and the dread. Approaching food like it was my last meal. Rescheduling multiple appointments, including the acupuncture I was supposed to have today. Taking dexamethasone, which I hate. For nothing.
Here I was, on Wednesday, another day delayed. I drove myself to chemo, alone. I was worried I will be too ill to drive home, but figured that out later. I waited in line to check in. I waited in the room to be called back. I waited till 11 to meet my new nurse, who had unsettled guidance about my premeds. She didn't put on sterile gloves when she was assembling the port pack, so I asked her to do it again. I can't handle an infection traveling straight through my central vein to my heart right now. Or ever. Maybe she did it right and I don't know any better, but I didn't care. I think she was a little peeved, but it won't be her in the ER or operating room, so I had to ask. She did a good job pushing the needle in with a light touch. We eventually got the premeds figured out. She has been super precise and very helpful, and I explained that I am an outlier and very unlucky special snowflake, so I think she got why I was so anxious. A lot of unnecessary stress getting to this point, but we are going to get through it. I am focusing on the positive. As the day went on, it was easier and easier to be cheerful as others lifted me up.
I got the most beautiful flowers last night
from my CrossFit friends. My baby sister was all ready to help me party early for my b day. My mom brought tea and lavender soap and oils to help me relax. Her friend Christie sent feathers and a lovely note from her pet parrot, a fellow Amazon, as the feathers are a traditional token of good luck. I talked to my other sister and brief texts with my brother. All uplifting. I think my dad gets back from abroad soon too. Today, a friend of mine Ubered over to sit with me so I wouldn't be alone, and a former CrossFit client, and unbeknownst to me till now a current DHS colleague, who saw my story at work volunteered to bring me a milkshake! The story that went out to about 2,000 people earlier this week was posted on our internal Web page for the Department, reaching potentially all 250,000+ employees and many more contractors. Other people who I knew and more whom I did not know emailed me their support. My husband was able to eventually leave work early, and my earlier nurse called from her new job to check on me. The colo-rectal chemo nurse even shared her ginger candy with me. I also got to see a fellow patient who has become a friend during this process. I really needed all of that today. All good things.
Best of all, no more poison! I might not be throwing down for my birthday on Sunday, but I still have a lot to celebrate. Not excited about the surgery being my next big hurdle, but we are making headway! One step at a time. Thank you to everyone who has been helping me on this journey. I could not do this alone.
Office of General Counsel Attorney for NPPD, A Breast
Cancer Survivor
I
am a DHS cybersecurity attorney, I have breast cancer, and I am 32 years old.
Immediately
after graduating law school in 2006, I joined DHS because I wanted to be part
of making sure that an attack like 9/11 could never happen again. I’ve been
lucky to be healthy early in my career, racking up sick leave while also
gaining the professional opportunities of a lifetime– being the Chief
Negotiator for the United States Government on international agreements,
serving on the President’s Export Control Reform Task Force, twice visiting
the White House Situation Room, and more recently providing legal support to
NPPD/CS&C on cybersecurity operations and incident response, including
the USIS breach involving government contractor background investigation
security clearance data, the Healthcare.gov incident, and the earlier
Heartbleed vulnerability response. The intellectual challenge and thrill of
working these issues has been amazing. The feeling of making a difference for
the American people, even if only in some small way, has been even better.
The best part of it all has been learning what incredible colleagues,
supervisors, and clients I serve with here at DHS.
I
discovered a lump doing a self-exam in May of this year. I was due for an
annual physical anyway, so I scheduled one. On May 27, I had the physical and
my general practitioner confirmed a palpable mass. On May 28, I had an
ultrasound and due to my age, a 3D mammogram as well. The radiologist
recommended a biopsy, which I had on June 4. I received my diagnosis on June
6 – invasive ductal carcinoma with ductal carcinoma in situ. After additional
pathology labs and radiology imaging, I learned it was Stage 2 and positive
for estrogen, progesterone, and HER2. This meant my treatment would involve
an intense year of: chemotherapy (July-Oct.), targeted biologics (July
’14-15), surgery (Nov.), and six weeks of radiation (Dec.-Jan.); to be
followed by ten more years of daily hormonal therapy. Barring a recurrence,
I’ll finally be done with cancer treatment in July 2025. The hardest parts
should be over by the end of January. Luckily, my doctors believe we caught
the cancer before it spread to my lymph nodes or elsewhere. Currently, I am
undergoing chemotherapy before surgery, and I have been through 5 of 6 rounds
of what I’ve been calling the “Horrible Cocktail.” I hope to finish the
last round before my birthday on Nov. 2.
Being
only 32, I was shocked when I got my diagnosis, because at the time I didn’t
know anyone who had been through this. Over time, I’ve come to realize
how important raising awareness is. According to the American Cancer Society,
1 out of every 2 men and 1 out of every 3 women will be diagnosed with some
form of cancer in their lifetime, with 1 out of 8 women being diagnosed with
breast cancer specifically. Although rare, men can be diagnosed with
breast cancer too. Awareness is the first step to early
detection. This is one of two main reasons why I decided to share my breast
cancer diagnosis and journey with DHS as well as publicly, including at the Washington Redskins’ Breast Cancer
Awareness Game
against the Seattle Seahawks on October 6 (see photo). The other main reason
that I am opening up is to share the life lessons I’ve been learning since
starting this cancer journey, which no one should have to go through cancer
to appreciate.
Since
my diagnosis, I’ve tried to follow the advice of my medical oncologist, who
said, “Live your life.” I started a personal blog as to stay in touch better
with family and friends. I donated my long locks to Wigs for Kids and videoed it.
I continue to exercise when I can, finding health and
strength through the wonderful CrossFit community. Breast cancer will
definitely make my donation to the Combined Federal Campaign this year much more personal. I continue
to come to work and do my job, as best as I can, with the very understanding
help and support of my supervisors and colleagues, who have pitched in to
cover gaps when I’ve had to take sick leave, especially before I was ready to
share my news with our clients. I certainly wouldn’t volunteer for cancer (or
wish it on anyone else), but there have been so many moments of unexpected
joy and deep gratitude for things I would have previously not noticed or
maybe even have taken for granted. While I still have a long journey
ahead of me, the lessons I’ve learned so far are these: Early detection is
invaluable. Live your life. Be fully present in it. Focus on the positive.
Take the time to appreciate the little things and be grateful. Let people
help you, and people will continually surprise you at how great they can be.
The
best part of working at DHS is people helping people to solve real problems.
To my supervisor; second-line supervisor;
close colleagues; the rest of the OGC/NPPLD team; my prior colleagues and
clients who voiced their support; and to my current clients, especially those
who didn’t even know till now, thanks for being great. What you do every day
isn’t just about the mission and serving the American people, it’s about
helping other people, including the folks who work here. Thanks for
helping me.
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But these last few days, I sure have felt like it. Just delirious. I woke up today, and it was like 3 days had passed. My fever and chills seem to have finally quit. I am still weak and fatigued, but I am back in the land of the living finally this afternoon. I woke up in the middle of last night with about 2 hours of unrelenting diarrhea. Still a periodic issue, but I am so afraid to eat that there is hardly anything left inside me to have an issue with. Steroid acne/staph boils are still coming, but the Burt's Bees tea tree oil blend is helping with the deep cysts. It was just a cold, but on top of the chemo, after all the excitement of the weekend. Monday, a federal holiday, I was still on a high and had the best day ever with a friend and the dogs at a dog park. I thought I had normal chemo ickiness on Tuesday, but I should have stayed home because the cold was starting. I have been home sick in bed (or the bathroom) since. This Friday, I finally feel a little better. Still resting, but quasi functional.
I can't believe I actually made it through the wedding rehearsal and the wedding. Must have been a "prayer pass." I only had a few interruptions at the rehearsal dinner. At the wedding, I did not vommit from the pulpit during the reading at the ceremony, nor did my wig accidentally catch on fire by the candles. I had been so scared I dreamed about both. I sat at a table and drank juice during the reception cocktaiks rather than standing and mingling. I nibbled at dinner to avoid digestive drama, and I managed to get myself on the dancefloor for a handful of songs, although my endurance was one slow song only and then back to sitting down. I was disappointed not to feel up to more, especially because the band was great! I did manage to wear heels without a neuropathy impact. I was also even happier about my port placement because I could wear a strapless dress I already owned without the scar showing. Overall, success!
It was all worth it. I was so glad to be there with my family and friends on such a happy day. I loved reconnecting with my dad's fraternity brother and his wife- I was the flower girl (my first wedding appearance) at their wedding. I got one of the best hugs ever from my Aunt Robin. I got to hear some pretty great stories during my grandmother's toast to my dad, and I got to be close to her for one of the sweetest moments in the church when we first sat down and she wiped her eye and held my hand as she looked up at my dad, saying, "He's still my little boy."
My favorite moment involved the bottle of champagne from Josh and my wedding, which had been a gift from the Jetton side of the family, my grandfather in particular, and signed by my relatives. The bottle was Champagne Pol Roger, for my Grandaddy Roger who could not be at our ceremony April 7, 2012, due to travel limitations from his fight with emphysema. Josh and I planned to have it with our wedding cake on our first anniversary, but we enjoyed the wine at dinner a bit too much to feel good about opening it on that day. So, we resolved to save it for a special occasion. He passed away on May 5, 2013, not even a month later, when Josh and I were in Seattle at the wedding of Josh's childhood best friend. I didn't get to say goodbye, but I knew he loved me. Still, I had always felt things were unfinished.
Josh and I gave my father and his bride our bottle from Grandaddy Roger with a brief toast at the wedding. Amazingly, like fish and loaves of bread, we kept pouring and pouring glasses, and I think all my Jetton relatives were able to have some. He would have loved to have been there. He would have loved to have seen my dad happy. It was beautiful seeing the whole family so together and so raw. It was perfect. There was a moment too when I really felt like he was there, a presence that was a hug goodbye, and I've been at peace with his passing since. That was the special occasion we were waiting for. I know my dad and his family felt him there too.
Love transcends time and space. The people we love are always with us.
So I am pretty sure I got Aloxi for the first time as a premed during round 5. No nausea at all and only one digestive episode... until Friday at 1pm when the queasies started coming. Aloxi is a long term antiemetic (aka anti nausea) that they give via IV, and it worked amazingly for the first 42 hours post chemo. Now, in addition to bone crushing fatigue, I am miserable. I cannot complain too much. Normally my nausea lasts well into day 10 post chemo and digestive drama goes on long after that. At least I got 3 normal ish digestive days. I am just really disappointed not to feel better. And, I am disappointed that I felt deceived into thinking maybe it would just be the fatigue that was worse this round.
My dad is getting married this weekend, and I have family here I want to see! My cousin is also getting married down South, so it is a double whammy not to be able to do stuff here or there. Josh and I tried to go visit my dad's early arrival crowd tonight, and I had to stop at a gas station before deciding we needed to turn back around and go home. I rested all day and still could not function. I know he wants me to feel better, but it still kills me not to be able to be there. I show up for people. I want to be there. I want to see my siblings and my relatives. And tonight, I just couldn't.
I hate this stupid cancer. I hate feeling sick. I hate missing my friends and the gym and even work. I hate that when I cry my tears smell and taste like chemo (imagine gasoline), and I hate that that makes me want to throw up even more.
One more round. I am going to get through this. It is going to get better. It is what it is right now. I will rest. I will eat well. I will pray, and it will be however it is supposed to be. I don't have to like it to accept it. But, I am going to get through this.
Tonight, I just needed to vent.
Round 5 is kicking my butt. I got a full dose of everything. Starting with premeds, I had sweats, chills, headache and stomach ache during chemo, when normally I am so drugged up I feel great. I could barely drive home. The last two days, I have had a burst of morning energy then a nose dive. Just laid out. Still, I ONLY HAVE ONE MORE ROUND OF THE HORRIBLE COCKTAIL! I can't wait for this to be over. More to report as soon as I get my energy back up.
Platelets are about the same, 85 today and 87 on Friday. No chemo today. Sigh.
We try again Monday. If my blood work is good, I have chemo Tuesday. If the platelets are not up, I go back everyday for blood work till they are. Josh probably won't be able to go. I had to push back all my chemo appointments for a week. I had to push back my surgery. I will have to push back my radiation mapping and start of radiation too. It is what it is. It's not anything I did or didn't do. My bone marrow is just tired. This is what chemo does to a person. If platelets drop below 50, I will get a transfusion. Happily, I am not there yet. My doctors and my medical team know what to do. I am going to see my TCM doc/acupuncturist in an hour. I keep telling myself it will be ok. Sometimes all you can do is wait and pray.
My onc says if I feel like it, I can still go to work and exercise, just do what I would normally do. So that's the game plan. Do my thing, maybe be a little more careful with knives while chopping vegetables, but otherwise just have patience. My ted blood cells are a touch low, so fatigue is somewhat expected.
I did wear one of the new wigs today. Loving it. I may keep swapping them out till I find myself a good luck wig.
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| #Balancelife |
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| CrossFit Rubicon had this amazing and hilarious t-shirt too! |
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| Balance Crew! |
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| How cute are these Yamasaki kids?!?! Highly skilled though. They could totally judo throw me and put me in an armbar. |
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| American Cancer Society Look Good Feel Better Volunteers in Training |
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| Hans & Eivind |
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| With Tanya Snyder |
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| Chris Cooley talking about his mama! Best cancer pregame talk ever. |
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| Darrel Young and Adam Hayward |
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| Ana and Wes Phillips |
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| Nick Sundberg and Tress Way |
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| RGIII's Locker |
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| LB #55 Adam Hayward |
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| Tress Way getting fake eyelashes from MAC! |
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| Darrel Young & the "Fiona" wig, before we discovered "Janae" |
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My new wig "Marlo Janae" looks like early career Marlo Young  |
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| Preview of the PINK! |
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| Beyond excited!!!!!!! |
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| Glad to have a buddy I already knew and 29 more at Monday's game! |
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| Holly smiling at the vet after we got her good news! |
