Tea Time

Had the most amazing tea for breakfast this morning, sent direct from London from my friend Stephanie. It was Assam tea made with fresh milk from the farmers market and a touch of sugar, in my favorite mug. Who needs Starbucks when Fortnum & Mason is an option?! Loved it!!!

Haven't put out a music reference in a while so here are two.

For brewing a morning cup of tea, a chipper UK inspired piece, Best Be Believing by alunageorge:

My overall vibe these days (also a good tune for an afternoon work break and spot of tea), Slow Motion by Phox:

Acupuncture and the gym!

I listened to this NPR TED Talk Radio Hour NPR TED Talk Radio Hour show from 08/22/2014 on my commute into work this morning, and it was like a sermon that I was meant to hear.  The whole thing just touched a lot of raw places in my heart that needed speaking to and healing. Here's the description if you don't have time to download the whole thing:

We try so hard to be perfect, to never make mistakes and to avoid failure at all costs. But mistakes happen. And when they do, how do we deal with being wrong? In this episode, TED speakers look at those darker moments in our lives, and consider why sometimes we need to make mistakes and face them head on. Dr. Brian Goldman tells a profound story about the first big mistake he made in the ER, and questions medicine's culture of denial. Professor Brené Brown explains how important it is to confront shame. Also, jazz composer Stefon Harris argues that a lot of our actions are seen as mistakes only because we don't react to them appropriately. Plus, Margaret Heffernan, the former CEO of five businesses, tells the story of two unexpected collaborators, and how good disagreement is central to progress.

I still don't feel great, but I think I am managing it pretty darn well. I went to see the closer acupuncture guy. He was good. My neuropathy symptoms continue to improve, but after an hour treatment, I felt like it was about a 50% improvement, when the same prior rate of improvement would have taken 24h+ without acupuncture. We also talked supplements, and we are on the same wavelength. I go back on Thursday and I plan to keep on going back.

I also made it to the gym! I pack a bag every night but just haven't been feeling up to going by the time the end of day rolls around. Often, I leave work, drive straight home, and immediately get into bed. Today, I was on the fence about how I was feeling, but I have been really supported and encouraged by my friend Ramzi to get back in there. I went and scaled everything, but I worked out for an hour. Proud. Here was the workout. Not an easy one! If you're curious, on the required rest/work intervals, I hit 95# for 10 reps, 115 for 20, and then after 135 for 3, I dropped to 95 again for the remaining 27, finishing right at 4m even. Easy row pace for 821m in 4m following.

At the gym, since it was 90 degrees in DC today, I took the wig off and worked out in my kiwi fuzz baldness. People were totally cool about it. 

I have also decided I am rebaselining everything. So really, this is just an opportunity to hit a cancer PR everytime I go. I am going to try to prioritize the quality of my movement over weighted,  reps and numbers. "Quality PRs" where the weight is the same but the form is better, that's a thing too.  Jessie Albert knows all about these. It was wonderful to see people at the gym. People who knew. People who didn't know. I was grateful just to move and reconnect. I am finally ok with not pushing it to a redline everytime I go in. (This is CrossFit, it's what we do. It's called high intensity for a reason. But whatever.) It was a victory to go. It was a victory to make it through class. I am pleased. I may have to think a bit more about my anti nausea med timing for when I go to class (I felt the dizzy yuckiness creeping back in and had to leave after class earlier than I wanted to.), but I have a foothold here again. All I want to do is claw my way back up this cliff.

Sometimes I wonder if what I am going through is just too hard for some people ro even hear. When people ask how I am doing, I don't say good/fine/ok. I say, "Well, I am here." The fact I can do any of it is a good thing, but it's still hard as hell and I really don't feel "good." I mean, good compared to what? Not vomiting multiple times a day? Not being in the ER? Not being so tired I end up in bed for a whole day/weekend? Yes, I am better than that, but I really feel like people just can't even conceive what it's like. I certainly had no idea before this. And if they do, well, what do they even say to that? There is no right thing to say. My "I am here" is a shorthand for acknowledging that chemo is not exactly a trip to the spa, but I am staying positive, and on the relative scale, yeah, I am better. Details are only a question away.

Onward. 

My hair is fighting back.

It's unquestionable. My hair is growing. Despite shaving my head bald 2 weeks ago, I now look like a little baby kiwi fruit, rather than an eyebrow-less egg, which was my expectation. The eyebrows are thinner, but hanging in. I don't even know what to say about the hair on my head though. I think I will just let it keep growing and see what happens. Down to my roots, I'm a fighter!

Acupuncturist office visit tomorrow and needling on Wednesday. Right hand still tingling and digestive system still an issue. Nausea is not fun. I am tired of feeling sick and tired, so I am trying not to think about it and pretending it will go away. Headed to bed early and hope I can sleep on through.

Heard a funny story about a friend of a friend who has morning sickness from pregnancy every time she brushes her teeth. Thank goodness that isn't me! I bet her kids grow up to be dentists.

Day 4, post chemo round 3

Feeling a bit better today. Still tingling a bit in hands and feet. I am going to try to get into an acupuncture place closer to work so I can go more often. Here are the practice guidelines on chemotherapy induced peripheral neuropathy. Nothing exciting. I will email my nurse in the morning and see what happens. She's brilliant, so hope lies there.

Best thing I did today (only thing) was go to the farmers market. Nothing like a fresh, ripe, juicy peach to make you feel healthier in one bite! I ate 4 already today. I also bought some fresh bread, tomatoes, eggs, milk, and sheep's cheese - insanely good.

Had a great chat with a colleague of my sister's who is going to help me sort through some nutritional studies.

And, a dear friend is helping get me back into the gym.

Gratitude and hope. Trying to stay focused on that! Attitude is everything.

Feeling ish

Digestive symptoms under control, but still have a tummy ache. Last night I had terrible foot cramps, which have continued today, and my hands hurt a bit too. I'm worried I messed up by not going to acupuncture these last two weeks. Chemotherapy induced peripheral neuropathy is no joke, and it can last months to years to permanent. Sigh. Day 3.

Other than visit Dunkin this morning, I did absolutely nothing today. Too nervous to leave the house with how I am feeling. The blueberry cake donuts, however, were amazing and totally worth it! Hoping to feel better tomorrow.

Day after chemo, went to work!

Feeling alright! A little bit nauseous, a little bit of a headache, but no digestive issues yet. Mild flushing. Mild fatigue. Fasted through the day, planning to have breakfast tomorrow. Last time I only waited 24h post chemo, and it was not quite enough. This time, Friday morning will be 36h after. I'm hoping it's enough to be 100% out of the woods on digestive issues. I plan to have a light start with juice, but I really cannot wait to eat. I have been thinking about blueberry cake donuts for days. Can't get too greedy though. Feeling hopeful! Grateful for so much love and support this round. I'm past the halfway point on the horrible 6 rounds!!!

Chemo Rd 3/6 of the Horrible Cocktail

Halfway! Halfway! Halfway!

BRING IT.

915am blood work
1030am dr appt
1100am infusion of TCHP
5ish pm done

I have folks coming in, Skype calls to make, a really cute video of kittens to watch, and personal emails ready to be drafted and sent. Got my work laptop to keep a key initiative moving. Also going to try to set some fitness goals that I think I can hit. Going to start daydreaming about some travel this time next year. FORWARD LOOKING and POSITIVE.

Somehow bitter always comes with sweet. I worked some kinda crazy hours the past two weeks, so I haven't been on Facebook a lot.  Last night, I saw on Facebook the obituary of my sorority sister, who died after a long battle with cancer at Johns Hopkins Baltimore. She was kind, funny, a community volunteer, and a fellow lawyer. We drifted apart somewhat after college, but I always thought of her fondly and was better for knowing her, her kindness and her humor. She was 31. Her obit reflects the wonderful person she was, gone too young. I can't think too much about it, but what I love about the story of her life is that who she became was reflected in an evolution of clearly defined themes showing her life's purpose. I plan to fight cancer like hell, and both now and in the future. Looking up to Vickie, I want to be sure I am clearly focused on purpose and consistent in my thoughts, actions and associations. Vickie lived well, and I hope to match the quality of her spirit for a long time to come.

RIP Victoria F. "Vickie" Gelfman, prosecutor - baltimoresun.com obituary

Two days out from chemo

Started fasting after lunch today.

I probably shouldn't have discovered this website over the weekend.

And this song has been stuck in my head:

But I am so ready. Wednesday. Bring on round 3 of the 6 horrible chemo cocktails (Yeah, there are 12 more lightweight chemo cocktails after that and surgery and radiation, but one mile post at a time.)

Rethinking surgery options

Good news came in over email this weekend, the rest of my genetic panel came back totally negative. Guess me getting cancer was more due to environmental factors since it wasn't genetic. Too much stress, not enough sleep, excess sugar, maybe that hormonal birth control. I don't know. A good reminder to keep myself in better balance going forward. This article on staying calm and this article on overscheduled busyness versus working through emotions and accepting one's thoughts were also timely.

I've been reading about the long term effects of radiation, and it's pretty scary. I don't want a plastic implant because I have shown multiple plastic allergies. After that, I'm open to the best option for health and cosmetic results. I am told there is no overall survival distinction between a mastectomy and a lumpectomy with radiation. With the mastectomy it's a much more brutal surgery, but no radiation needed in my case. With a lumpectomy, the surgery isn't so bad, but radiation is not great. It can have permanent effects as well. 

I found another option recently. The Brava plus fat grafting, which can be used for a full reconstruction after a mastectomy. One patient described her experience here. This study showed fewer complications and better cosmetic outcomes in non-irradiated mastectomy cases over irradiated breast conserving lumpectomies. That got my attention. Liposuction from other areas to relocate to the breast didn't sound so bad either.

Dr. Khouri of the Miami Breast Center led the Brava trial and has been teaching others. I emailed them and am following up on a response requesting pictures.  I am willing to travel for a good result. (For my lesser chested friends, it works for purely cosmetic cases too.) I've been reading this breast cancer forum and this one on fat grafting. That's how I also discovered Dr. Anh in NYC. My brother and sister in law live there, so another good option. This news piece was insightful.

One thing that will be annoying is that if I decide to do this, I will have to wait till sometime after I finish Herceptin... in July 2015, because the drug interferes with blood vessel growth and that is needed for the fat scaffolding. If I can get a better health and cosmetic result, I think I might take it. The harder surgery, the longer wait to be whole, the additional travel and associated expense. Better to get it right the first time than deal with complications. Measure twice, cut once. Still learning more.

This quick snippet from a longer Tig Notaro skit made me laugh today:

My lunch also left me with this positive note:

Doing better, work is crazy

Job has been crazy lately. It's hard work, but I am enjoying it.

I am getting myself back to where I need to be emotionally, although it is a process, not a magic wand transformation. It's been a good thing to sort so much out in my head and my heart.

I continue to think about the new normal, and now that there are absolutely no expectations about what I can or should do, I am really focusing on trying to figure out exactly what I want in every area of my life. It's harder than you'd think.

I can't believe chemo round 3, the halfway point of my six terrible cocktails, is next week on Wednesday. I will start fasting mid day Monday. Whew. Can't even think about that. Gotta make it to the weekend first.

Lots of other things swirling around in my head. More this weekend.

Current theme song (thanks Adeola!):

A quote I've loved for ages that speaks to me right now:

Shaved... I did it anyway

While crying alligator tears in the shower this morning, just ashamed of being jealous and frustrated and not knowing how to get over it, I decided that I was done with my head hurting from all the hairs falling out. I was sick of seeing even the little buzz cut hairs fall out like cancer confetti. Just absolutely done with it. So, I shaved it.

I am not supposed to use razors because of risk of infection, but that's what antibiotics are for. I lathered my head in Neosporin in case, but let the doctors fix me if they have to. I just needed to eliminate this constant rain of cancer reminder, and doctors can't do a darn thing about the way it makes me feel seeing it falling out and walking around like a mangey dog under that wig. An infection couldn't make me feel worse. So there. Now I am really, truly bald. Not willing to risk death yet for a professional pedicure, but don't think I haven't thought of it.

Time to get it together.

Thanks for the words of support and sending good vibes my way. It's helping me get out of this stupid cancer hole of woe I fell into.

Physically up, emotionally down

Well, in some ways this last week was a bingefest on normal life. In others, the reduction in physical symptoms allowed the emotions to rise.

I went to work on Monday. I went to my ob/gyn for a consult on Paragard; since I am not allowed to get pregnant and not allowed to take hormonal birth control, this is the best option. I went to CrossFit on Monday. I scaled the workout, but I kept moving. On Monday, day 5 post chemo when it is supposed to be the worst, I was just so happy not to be in the bed that I was grateful to finish the workout. Later, I was less happy, when I thought about how hard 10 pushups seemed or that it felt like I was working out with a garden hose stuck in my neck. I really feel the port a cath when my heart rate is up. I joined a friend's improv class, Monday night, but had trouble enjoying it fully because I couldn't control my nausea symptoms. The class and her teaching were awesome though. I would love to go again.

Tuesday, Wednesday, and Thursday, I went home right after work. I packed a bag for the gym each day, but couldn't make myself go and didn't have the energy to make myself go on a walk at home. I started eating more poorly. Still was feeling slightly nauseous, but not bad. No oral mucositis this round, so that's good. I still can't drink coffee because my stomach is upset all the time. Since chemo, I have become lactose intolerant, though I wasn't before, so milk doesn't help. I do miss coffee.

Happily, I went back to the sleep study doctor and because chemo round 2 went well, I got permission for a new drug for my idiopathic hypersomnia, which is unrelated to cancer. Modafinil, aka Nuvigil. I now have the energy of a normal person on chemo, rather than an unusually sleepy person on chemo. Really bad headache the first day, but fine after that.

I received beautiful flowers this week, and friends and family continued to reach out.

Emotionally however, I struggled this week, with jealousy about what I used to be able to do and how I used to feel, as well as with things I expected to do, be or have now or in the future. I struggled with half the weight I normally move in a workout, as I watched others around me hit new PRs and big numbers I know I couldn't hit now, but could have when I was well. I used to be able to rely on my strength and my workouts to cope, even when everything else was tough, and I was mad working out wasn't quite the relief it used to be. I got a comment about being able to tell about my wig from someone I told that made me feel so self conscious about it, even though they didn't mean it that way, and I dont think it's true. I think you can only tell if you already know to look. My hair underneath is really patchy now, like a dog with mange. I am not supposed to shave it with a razor due to risks of infection if I cut myself, so I have to wait for even my GI Jane buzz cut to fall out. I was mad that I couldn't just go get a venti black eye from Starbucks when I was tired, like I used to do 3-4 times a day before. I was worried about opportunities at work passing me by because of my health and absences. I had to leave a birthday party early, and I skipped a going away party because I didn't know if I could last at the bar. I missed being there for my friends. I have like 10 emails I need to write, phone calls I need to return, thank you notes I need to send, even text messages to answer. I just didn't feel like it, and that's not me. One of Josh's friends had a baby. He went over to visit, and I couldn't go because I thought I might cry there. The only reason I thought I would be going to doctors and hospitals at this stage in my life was pregnancy and starting a family of our own. Who knows when or if that will happen, and certainly not anytime soon. I just wasn't ready to be confronted with that.

It's like now that I physically feel so much better, and the adrenaline of trying to just survive has faded away, I am left with my own emotions and attachments about what normal ought to be. But normal now isn't normal before, and my expectations about the present and the future all have to be revised. It's really hard.

Physically, I feel pretty great. I stopped taking nausea meds on Wednesday and felt ok by Friday. My energy now on modafinil is much better. I went in to the office all 5 days this week, and I did good work while I was there, helping my clients with issues that matter.

Emotionally, my heart just hurt this week, and a brave face didn't make me feel any better. I don't know what exactly will make me feel better. I am trying to learn to accept a new normal and a new version of the future. I've been looking at this as a year of treatment, but this week hit me about how much will be forever different as a cancer survivor, really my whole life. The enormity of these realizations made me feel withdrawn and a little bit lost.

I should have kept blogging. I think it helps me sort things out before they build, and the support helps. Lesson learned and now, soldiering on.

Tomorrow is a new day, and each day is what you make of it.

American Cancer Society Look Good Feel Better 25th Anniversary Event at Eivind and Hans

Met some wonderful people tonight. Feeling pretty good. Had a little sparkling cider. Fooled some make up artists and hair stylists who didn't realize I was wearing a wig. Looking forward to another great day tomorrow!