Phrankly Phred

My encounter with Breast Cancer: A list of essays/posts I need to write (an iterative list)

phranklyphred — Sat, 23 Mar 2019 02:42:47 +0000

Information for large-breasted women who have a lumpectomy and are going through radiation: Where do you buy appropriate (especially for work) bras?!
Information for large breasted women who still are going through breast cancer radiation with breasts: what do we need to know?
Body positivity and the medical establishment–if I am an overweight person, I am aware that I’m overweight. Why is it on the front of everything you give me? AND, why are you talking about it all the time? I read. I know about optimal weight and recurrence risks. I’m here because of cancer.
Why do doctors always suggest weight watchers? Why don’t they refer patients to nutritionists/training programs? When are you going to ask me helpful questions? Would you like to know about my dietary issues?

Surgery: Check, Next up? Radiation

phranklyphred — Sat, 23 Mar 2019 02:30:08 +0000

Checking in…exactly three weeks after my lumpectomy. Today, I was able to remove the steri strips. The surgical site healed really well. The pathology report was good– There was .9 cm of abnormal cells, they have left the building, margins were clean, and everything was as expected (no invasive cells, further discoveries, etc.)

Now, I can do normal activities without restriction–swimming, yoga, lift more than 10 pounds on the right side. I’ll be throwing myself into as many of those “freedoms” as I can, because I have one week before radiation starts, and my skin begins to burn.

Recovery from surgery was easy. Surgery was on a Friday and I was back at work the next Tuesday. I have been spending lots of time going to doctor’s appointments. I feel like it’s my new hobby. I am very excited, however, to have a week without appointments coming up.

Medical Oncologist Appointment: After radiation, I’m going to start Tamoxifen, which is the anti-hormone medication that pretends to be estrogen and attaches to your cells. I was really nervous about taking this medication (still am), but I’m very pleased that the oncologist agreed to a lower dose. There’s a new study that came out in December which followed patients taking 5 mg, vs. 20 over three years with similar results. Hopefully this will minimize the side effects (all the side effects of menopause, but you’re still supposed to get your period). I went to the gynecologist to learn more about what could happen and what to look for. She was more informative in regards to what can happen to your period, which was helpful.

Radiation Oncologist Appointment: I will be doing 27 sessions of radiation of the whole breast. If I was over 40, I might have been eligible for the accelerated version of radiation. But, I’m not. This is going to be a slog. I’m dreading the next couple of months. Hopefully, I can stay on top of the skin side effects and work to minimize the fatigue through exercise. I’m buying various skincare products that are supposed to help (I’m balancing being prepared with over-buying random expensive creams). I did get a good radiation time that doesn’t interfere with work–7:30 AM. Radiation starts April 3. *

I’m going to try to enjoy my last week of “freedom”!

*You may be wondering how you can help, which I really appreciate. If I’m experiencing significant fatigue, I may reach out for help with daily living tasks (groceries, laundry, cleaning). Otherwise, I am sure I’ll need cheering up because I know I’ll burn pretty bad (fair skin and all). Text me/FB message me funny/cute photos or videos of dogs or other animals (sorry, cats don’t really do it for me) after April 3. Or say hi and tell me about your exciting life (I guarantee it’ll be more interesting than a play by play of my skin burns)

Surgery Week

phranklyphred — Tue, 26 Feb 2019 03:30:44 +0000

The wait for genetic testing results was really really long. First I wasn’t thinking about it. Then, I was reminded that if I had one of the 9 mutations, I would have to make a big decision about a mastectomy. A big decision I didn’t want to make. It was more about the length of time the surgery recovery would take than the implications of the surgery for me.

I went to LA a couple days early for a conference, a trip I had planned long before the chaos of the last couple of months. I didn’t do as much planning as usual, since my time was spent working (work has been so busy), worrying or going to doctor’s appointments or mourning my grandpa. But, I love traveling. And my grandpa loved to travel–and loved that I loved to travel. He knew I was going to Long Beach, told me to visit the Queen Mary. (Side note: one of my colleagues got bumped from their hotel and stayed there and apparently it’s no great shakes) And so I went. I stayed in this vintage, very simple motel (also very clean and safe) on the edge of Hollywood, adjacent to Thai Town. A good decision. I saw the real LA: the drag queens, the homeless, the yuppy gay men. (is yuppy still a thing?)

I spent two full days playing tourist–The Getty, Skirball Center to see the RBG exhibit, a walking tour of Downtown LA, and a visit to Cocobella (maybe not so touristy), really delicious vegan ice cream. It was fun and my days were filled. I used public transit almost exclusively (yes in LA) But, I spent my nights worrying about this genetic test.

I was so relieved to get the call (received, of course, during the walking tour) that I had “reassuring results”. I talked to the Genetic Counselor the next day and found out I was in the clear. No prophylactic mastectomy for me. I was in the clear. I’ve requested the second genetic panel, which will give information regarding genetic mutations of moderate risk. And then, they will let me know what they think my family should do (should they test? or no?)

I got back from the conference (in Long Beach) in the wee hours of Saturday morning. The conference was good, one of the best I’ve attended.

I had the pre-op appointment today and I’m in the clear as long as I don’t get a bad cough in the next couple of days.

Surgery is on Friday. I get a radioactive bead placed at the site using a Mammogram on Thursday (I’m taking the day off because, really, who wants to go to work with a radioactive bead in their chest? I don’t). My parents will be here. The recovery is supposed to be relatively easy. It’s not a big deal surgery. But, it’s real. This is a real thing that is happening to me. And hopefully it’ll continue to be “not that big of a deal.” But, it’s still annoying and time consuming and sucky. Oh, and I’m sure I’ll meet my out-of-pocket maximum on my health insurance this year. So there’s that.

I’ll let you know how it goes. Don’t worry, I don’t do photos!

It’s Stage 0: The Surgeon’s visit/Where we are now

phranklyphred — Wed, 30 Jan 2019 18:01:06 +0000

I was referred to the head of the Breast Center at NorthShore University Health. Dr. Y has a good reputation. My aunt reached out to her network to see what people thought (I was also looking for a dr. for a second opinion). And they liked her.

I liked her. She was very business-like but kind. She tried to put me at ease (not really possible). She answered our questions. My aunt came with me and my parents were on the phone.

She told us about DCIS. She talked about the lumpectomy, getting genetic testing, radiation (starts after at least a month after surgery), etc. She talked about a national “wait and see” study. The thing about DCIS is that it is diagnosed a lot. And since it’s non-invasive, they don’t really know when it jumps over the barrier into Stage 1 or invasive cancer. They used to do mostly mastectomies, but now many people get lumpectomies. If you start reading the forums and message boards, though, you do see a lot of women doing aggressive surgeries, especially in light of genetic mutations that put them at high risk.

My age puts me at high risk. And, I didn’t qualify for the study immediately because I’m under 40. (I suspect that other things would have disqualified me anyway). I would have been interested but it would have required discussion with my family (and there were already concerns).

I left the appointment with my head spinning. But, I feel like I’m in good hands, and the hospitals are convenient and high quality. After taking time to process and do more research, I decided to NOT get a second opinion right now. DCIS seems to have a fairly normalized treatment and NorthShore is a good institution. And I don’t have to drive downtown for treatments or appointments. I might change my mind further in the process or if I get a new/different diagnosis down the road (fingers crossed that doesn’t happen)

How I feel:

I’ve been sharing the news with friends and co-workers including my boss. Everyone is supportive. I’m overwhelmed and still processing things. I mostly feel annoyed by the inconvenience. My career has recently taken off and I’m really enjoying the work. Now, my health is going to be more of a priority. Like many people, taking time for myself/prioritizing myself is not my tendency. I’m also not super surprised, due to family history and my experiences with autoimmune diseases.

Important dates

Genetic testing (results arrive in about 10 business Days): Thursday, Feb. 7
Surgery: Friday, March 1

It’s Stage 0: Continued

phranklyphred — Wed, 30 Jan 2019 17:41:07 +0000

On Tuesday night (January 22, 2019) I went to bed early so that I could read my book. At 9:45, my phone rang. It was my Dr. (Dr. S). She asked if she could talk to me about my biopsy. Obviously, yes. And then she said the words abnormal and Stage 0 and more. I got out of bed and got my notebook and pen and started to take notes. The biopsy showed that I have Ductal Carcinoma in Situ. This is a Stage 0 Cancer/Pre-Cancer. Some people say it’s cancer, some say no. My surgeon called it a dangerous lesion. It’s 100% curable, but you are at risk for further breast cancers. It’s noninvasive and slow growing. (for reference, mine is Grade 2 and hormone receptor positve (both estrogen and progesterone0. Dr. S went on to say that she was referring me to a surgeon, that I would have to have a lumpectomy, and radiation, and then go on an anti-estrogen drug. Oh, and get off your birth control immediately. (Sidenote, I am one of those people who uses birth control to never have a period, which probably hasn’t helped the situation.)

I did cry on the phone. (Yes, mom, I did cry). Silently. I got off the phone. Texted a friend. Debated calling my parents. Decided not to, because my parents have been through enough lately and they deserved to sleep. After talking to a friend for while, I decided that I needed to do something else. So I hung up and then did all the research (that my friend told me not to do, but I always do all the research!). Unsurprisingly, I didn’t sleep much. And called my parents right away in the morning.

The surgeon’s office called me the next morning at work and offered me an appointment on Thursday at the end of the day. I was surprised how urgently this was treated for non-invasive, not-life threatening cancer that isn’t quite cancer.

BEFORE: It’s Stage 0/The consequences of an early Mammogram

phranklyphred — Wed, 30 Jan 2019 17:17:43 +0000

I decided to resurrect my old blog as a mode of communication for the next few months instead of using an illness based blog.

So here we are. This the background story. Last year, when I was 35, I asked my then-doctor about getting a mammogram given the family history on both sides.

Family History: Breast cancer goes up the maternal line: Grandmother and Great Aunt, Great Grandmother, and probably more. Also, my paternal aunt has had Breast cancer twice in the same breast.

She said ok but then didn’t give me instructions. Later, I figured out there was a phone number on my after care summary. I delayed and didn’t call. So, this past summer, when I went to my new doctor–who I chose because I heard she’s a better communicator and problem solver–we discussed early mammograms and the instructions were clear. I again procrastinated and ended up scheduling an appointment for December, after classes ended for the semester and faculty were gone. I had the first Mammogram on December 17, the day my mom went in for her knee replacement surgery AND the same day my grandpa fell (not the first time) and was taken to the ER.

I found the Mammogram to be relatively easy, and as I was getting dressed thought “I could do this every year, no problem. My Dr. called (I use my PCP) as I was walking into work. They wanted me to come back for a Diagnostic Mammogram of my right breast. I made an appointment for January, after winter break.

Friday, January 11 was the day of my Diagnostic Mammogram and the day my Grandpa ended up going on hospice.

I ended up having the mammogram and then a very long ultrasound. The radiologist told me I was going to need to have a biopsy. I was taken into the (more private) mammogram waiting room to talk to the nurse. (busy day, they were out of private spaces). I put my mom on speaker and we discussed the biopsy which would need to be done at Skokie Hospital on their prone biopsy table (the nurse was really excited about their new table–which I guess was cooler(?) than their old one. I scheduled the biopsy for MLK day, because Oakton was off and I suspected that my parents may be in town for a Celebration of Life.

My grandpa passed away on Sunday, January 13 and his Celebration of Life was on January 19.

The biopsy was really not bad. The prone table was fine. I listened to Call Your Girlfriend during the biopsy. I chose the episode about the Women’s March. I probably should re-listen, but it was soothing to listen to two women that I listen to every week during the procedure. You have to be super still, which is really hard. And the area where the biopsy was located is near the nipple, so apparently very difficult to access. I had what seemed like 10 mammograms. But, the biopsy itself wasn’t painful. And I wasn’t even dizzy when I sat up (which can happen and wouldn’t have been surprising for me).

My parents dropped me off at home. I had a little ice pack, which was soft and fit inside my bra. I had to ice all day. My friend Karen came up from downtown to hang out with me for the day. I was fine but my mom was nervous. We ate Thai food and watched Grace and Frankie. I took Tuesday off to re-calibrate after all the emotional turmoil of the last couple of weeks of hanging out with Grandpa in the hospital (and being with him as he passed) and the mammogram/biopsy drama.

Continued in the next post.

When I grow up, I want to be…

phranklyphred — Thu, 05 Nov 2015 04:24:54 +0000

When I was young I had 2 professional aspirations: to be the first female press secretary. And to be a psychologist. I even have a psychologist office all planned out. I always wanted to be a writer of some sort–and ha, I am. Just not the super creative type. I spent a good amount of my 20s trying to get paid for writing before going to graduate school and trying to alter my path. But, I still ended up doing grant writing. And then I veered off. Now, I’m back. Although I think I’ll be doing less writing in this grant job than the last one.

Being a psychologist. I love hearing people’s stories and sharing my perspective. And there are a lot of people that appreciate my perspective. I am pretty honest/blunt though. I say it like it is. Which is a little hard sometimes. I am glad, though, that I didn’t become a psychologist. Sometimes separating sadness or pain that I hear about is hard. I’m a little too sensitive and empathic. I’ve developed a tougher skin though.

I think that a job with some writing and some research is good. Eventually, I want a job with some writing, some research, and some innovating. That would be the sweet spot.

It’s the third day, and already I’m flailing

phranklyphred — Wed, 04 Nov 2015 04:30:27 +0000

Discipline is so hard to cultivate. And I’ve been devoid of good self-discipline for a while. So I’m already flailing! When I was a child, I had a ton of self discipline. And a super strict mom! I would practice piano before school. Every day. And after school sometimes, too. I would spend periods of time working on projects. I had this old book I got a used booksale–a how-to for roller skating. I would go over to our neighboring driveway (it was a driveway without a house) with that book and work for hours on the tricks. I don’t think I ever got very good, but I tried.

It was after college that I lost my self discipline, I think. But, especially in grad school. Because I got sick then. And everything just went out the window.

One thing that has carried me through these years though is taking myself to the woods. When I need to reconnect, exercise, get some fresh air, I go. Whether to a state park in Wisconsin or a forest preserve here in the Chicago area. I love being in the woods. It’s beautiful. There are things growing. There are trees. I also love being near the water, so if it’s near a lake or river, even better.

In the summers I’ve worked hard to go swimming at least once a week (I have a harder time in the winter, but this winter I’m going to try!). Now that I live in a fancy suburb with a nice indoor pool that isn’t at the high school, I am looking forward to trying it out.

Podcasts, podcasts, podcasts

phranklyphred — Tue, 03 Nov 2015 02:24:41 +0000

I discovered podcasts over a year ago. Before that, I listened occasionally, but I wasn’t that into them. And then I got an iPad and realized what I was missing! Now, I have an unnecessarily long list of podcasts I listen to regularly. Podcasts have helped to expand my mind, engage my curiosity, and learn new and different things. Podcasts really made the last year or so much more bearable. Especially on all the driving I have done in the midwest (up to Eau Claire, Minneapolis, down to Chicago, and more).

So, what’s on my podcast list? There could be so many more. I wonder what this says about me: I like stories, I like thinking about culture, feminism is my jam, and I love new music.

Pop Culture Happy Hour
Slate Culture Gabfest
Freakanomics
Call your Girlfriend
Broad Experience
99% Invisible
Slate: Working
All Songs Considered
World Cafe
Serial
Invisibillia
Nerdette
The Moth
Mortified
meditation podcasts I only listen to when there’s an “emergency”

Coming back to blogging: NaBloPoMo!

phranklyphred — Mon, 02 Nov 2015 02:14:26 +0000

So here I am . I’m ready to a writing practice for the month of November. I have intentionally brought balance to my life with a big tranformation. New job. New apartment. New city. Here I am! I moved back to the Chicago area. Took a grant writing job at a community college. I leave work at 5 (!). I don’t have my work email on my phone or ipad. I never check it on the weekends (may change with big deadlines). I’ve been working for a little over a month at the new place And now that I’m a little more used to everything, it’s time to improve my self-discipline and habits. Before, at my old job, I was so consumed both with work and the emotions necessary to sustain the work (adrenaline for sure) that I just couldn’t do it. Now it’s time. It’s been a few years without discipline. Maybe since grad school? I need to regain myself. That’s my goal for this year. I started this job, appropriately right after Rosh Hashanah.

What am I going to write about?

Who I am now?
The trip to New Orleans my sister and I took this year
My bucket list
Prompts from here
My favorite podcasts
Thoughts on current events.
what I’m consuming from pop culture

Whatever I do, I just want to develop a writing practice. Improve my skills. Foster my creativity.