Yearly Archives: 2015

Patients 2.0 at #health2con

Yesterday I did a short presentation for a conference session titled Patients 2.0, which is part of the Health 2.0 conference. Since I wasn’t given a lot of notice, I threw together a presentation relating to my rant about the diagnostic process for celiac disease – loosely based on my blog post. The question each speaker was asked is “if you had a magic wand and could change anything about healthcare (except making it free), what would it be?”  Given the short notice, I expected a more informal session. It turned out I was on a stage talking behind a podium. Fortunately, I’ve done this enough lately, that I’m comfortable with it. I also have enough passion about my topic that I can speak mostly coherently about it.

The key take away from my presentation is that I’d like to see diagnostic processes that account for the whole patient story, rather than processes that are based on protocols that don’t see the patient as a person.

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Tal Givoly (of Medivizor fame), who I met for the first time during the break, kindly took a few photos of me presenting:

This conference is drastically different then Medicine X, and yet has a vary similar audience. They are both conferences about the intersection of healthcare and technology. Both conferences also have a strong patient presence. They just take very different approaches to how they include patients into the discussion.

After the patient / caregiver panel (which is the one I was on), there was another panel on patient innovators. It was really powerful to hear people speak about their personal patient experiences, and how those experiences drove them to innovate in the healthcare space. The speakers were strong advocates and spoke with passion.

One such speaker was Brian King who created an App to help others with CF navigate healthcare (see https://itunes.apple.com/us/app/my-fight-against-cystic-fibrosis/id918730808?mt=8).

Another was Roger Holzberg who spoke about creating an Infusionarium – a pediatric infusion center that allowed kids to have meaningful experiences while undergoing treatment. He mentioned that in there needs analysis / exploration stage they discovered that young boys want to learn more about space exploration and girls want to connect with the ocean. What I found interesting with that is that my ‘happy place’ was snorkeling in Hawaii. So, even adult girls find happiness and connection with the ocean! I loved how the infusionarium not only provided an entertainment space, it also provided connections – they had real Nasa scientists talking to the kids in the infusion center. That was pretty cool.

This was me at this time last year:
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It actually made me see another opportunity for patent empowerment – the time spent in the infusion center can be wasted time. If you are well enough, then the time could be used to do something rather than passively waste away hours. It is a balance. I spent a lot of my infusion time working, writing, researching … although I also spent a fair bit of it watching TV. I was just lucky that they had really awesome Internet connections in the infusion center. I could be connected and work as much as I felt able to.

One thing I’m struggling with at this conference is the need for better business cards. At Ed Tech conferences and even at MedX, we used twitter as a way to connect. Twitter is less prevalent at this conference (and it is more difficult to tweet as there are no tables in the session rooms). However, for this conference I’m much more interested in exploring the Exhibits. I’m less interested in the sessions. I actually want to spent some time walking through the exhibit hall, talking to people, and seeing what innovation in healthcare looks like.

 

Deepening connections

Over the last few weeks I’ve had the privilege of deepening connections. I’ve been lucky enough to have been healthy enough and had funds enough to travel to the UK to attend two conferences (ALT-C Ed Tech Conference and QUB ePatient Blogging conference). This was quickly followed up by the Medicine X Ed conference here at Stanford, and later today I’ll be heading over to the Health 2.0 conference in Santa Clara. It has been a whirlwind. Somewhere in the middle I even did a reading as part of a book launch.

I’ve been writing this post in my head over and over since my return from the UK. Meeting people face-to-face for the first time can be very emotional, invigorating, and stimulating. There can be magic. However, this isn’t always the case. Sometimes when you meet in person, things just don’t work out. It is like the messiness that is life. No one is perfect, and yet we have a tendency to want to project that perfection on our virtual friends. That being said, we sometimes are surprised at just how nice people are in person. This post is about a few of the genuinely nice people that I had the pleasure to connect with in real life (IRL) – note that I dislike this term, but it is what is commonly used and is easier to type.

My point behind this post is to share some of the great times I’ve had over the last few weeks. Let’s start by the opportunity to meet Maha Bali. She was my friend and confidant throughout my cancer treatment. She was the first online friend that I told. I made a request of her, asking for some scarves, as she would know what it meant to wear a head covering on a hot summer day. She obliged but did something even more meaningful. She sent me some scarves that she bought for me, but also shared with me scarves that were hers. She shared a tradition that is common among muslim women. I was so deeply honored.

This was the first selfie we too right after meeting in real life (IRL) for the first time:

Photo & Video Sharing by SmugMugMaha’s daughter understood it sooner than we did. For her, it was no big deal. I was just Rebecca. She was used to seeing me on the screen and hearing my voice. Being physically present didn’t change anything. Meanwhile Maha and I spent a lot of time poking each other, hugging, validating that we were in the same physical space. It was special.

While we were in Manchester, there were so many people who wanted to meet Maha. It was a challenge to get any alone time. In the end, I was able to sneak in about 10 minutes of alone time – unfortunately, it was because I just needed a hug after hearing of Jaq’s passing. Again, I was able to call on my dear friend and confident.

We were in Manchester to present at the ALT conference, with our other rhizo friends and colleagues. Sarah has posted our presentation on her blog here: Rhizocats. In the end, I didn’t see too much of the conference itself, other than the two keynotes and a couple of sessions. I chose to skip out on the sessions in favour of spending time with Maha and supporting our Virtually Connecting project.

It was sad to say goodbye to Maha and her daughter, but I’m so glad I had the chance to meet IRL.

And one last selfie for the road:
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I then went on to the Queens University of Belfast ePatient Blogging and Microblogging conference. Here I got to meet a whole bunch of really amazing people. I’ve already blogged about how I found my tribe there, and how the conference helped give me language to better describe the type of research I want to do (one word – autopathography).

After the conference AnneMarie Cunningham, a friend I met at the Canadian Conference for Medical Education (CCME) in Ottawa two months before diagnosis (April 2014). When AnneMarie last came to San Francisco in October 2014, she reached out and said it would be nice to connect. Since chemo had made me unable to drive, my husband took a day off work and we toured around with AnneMarie and her husband. We enjoyed playing tour guides, but forgot to mention one thing … never turn your back on the ocean!

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After the QUB conference, AnneMarie brought me with her while she called on a friend from her university days in Belfast. It was interesting to learn a little bit more about Northern Ireland through the lens of old friends. I learned that in Northern Ireland, flags carry political connotations. After a brief visit, we headed out of town, passing a flute band on the street, which is yet another politically charged icon (Google Belfast Flute Bands). As we were leaving town we past by an odd sculpture called Rise, on the west side of Belfast. The locals call the sculpture either ‘The balls of the falls’ or ‘westicle’, which made us laugh.

I had mentioned to AnneMarie that back in the early 80s I had a penpal from Ireland – Castleblayney in county Monagham. It was through my penpal that I learned about ‘the troubles’ in Northern Ireland. Since it was almost on the way to AnneMarie’s mothers place, we drove through Castleblayney. We couldn’t find a castle to take a picture of, so instead, we took a picture of the festivities that we had just missed (arriving about 5 hours too late) – the Irish Bog Snorkelling Championships:
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After Castleblayney, we headed to Kilkeel and AnneMarie’s mother place, where we spent the night. The next day, AnneMarie’s mothers birthday, we went out to a nice lunch and I had a chance to meet a couple of AnneMarie’s siblings.

After lunch, we went on a bit of a tour of the area. I mentioned to AnneMarie that I had no yet been to a castle on this trip (I love castles). We drove over to take a peak at Greencastle Royal Castle:

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We were surprised to learn that the castle was open to the public. Not at all dressed appropriately for tromping around castles, we did it anyways:
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One of the people I was really looking forward to meeting at the QUB ePatient conference was Marie Ennis O’Connor. Unfortunately, she was not well enough to travel that week so we didn’t get to meet IRL. Fortunately, the following week both AnneMarie and Marie were coming to Stanford to present at Medicine X Ed. So I had a chance to connect with both of them again here:

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This time it was my turn to play tour guide. I had some lovely moments with both AnneMarie and Marie. I as able to share my tree with each of them:

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AnneMarie was here a little longer, so we took a quick drive up to Muir woods to see some of the giant coastal redwoods:
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I love the little (and big) things I learn about people when I get to spend a little time with them. I value my online friendships, but I have to admit that my connections go deeper when I get a chance to be with people in real life. I am honored to be able to call Maha, AnneMarie, and Marie friends. It has been such a pleasure to be able to spend some time connecting.

One thing I have learned about my closest online friends – they are all connectors. They are all people who thrive off of feeding relationships, and connecting people to one another. It is something that I also enjoy doing. I love it when something that I do brings two people together – catalyzing a new connection. It is not uncommon for our conversations to go something like “do you know this person?” or “you should meet this person” or “let me connect you to this person”. I see it in all of us. It is how we weave our webs.

If this then that

However cancer maybe anticipated in fantasy, the reality is different.

Somehow the stories we have in place never fit the reality, and sometimes this disjunction can be worse than having no story at all. ~ Arthur W. Frank (2013, p.54-55).

While walking today I was reminded of the advice I give people. I have ranted about things not to say to cancer survivors. On the top of that list is “If I had cancer, I would …”

And yet, I found myself going down that path. I found myself thinking … if this turns into that, then I would …

And then, I saw the logical flaw in my reasoning. The reality is, if something did happen, I would have no clue how I would react. I would have no idea what would change or not change. Worrying about the what if is just a waste of energy.

So, what caused today’s what if? Actually it all started yesterday morning. Stacey (@coffeemommy) and I were up at UCSF to give some of our blood for research. When it came to be my turn, I put both hands on the table and notices that my left hand was visibly swollen. Fortunately, Stacey was quick thinking and suggested I remove my wedding ring before the swelling got any worse.

After donating two small vials of my blood (we used the right arm), I made a quick phone call to my surgeons office. I was in to see her assistant later that day.

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We are not sure what it is yet, but the biggest suspect is early stage lymphedema. This is can happen as a side effect of breast cancer surgery – specially because they remove a few lymph nodes to ensure the cancer hasn’t spread (or if it has, they remove any cancerous lymph nodes). I have only had a couple removed, so I was at very low risk for lymphedema. It won’t get diagnosed for certain until next week. I have an urgent referral for the lymphedema clinic at Stanford, so hopefully I’ll get in to see someone on Monday or Tuesday.

Now, the what if, I would … if I need to wear a lymphedema sleeve I’m going to try and get a paisley patterns one so it looks like I have a full arm tattoo!

Giving blood … one small vial at a time

During the Medicine X conference, the twitter stream lit up with calls to give blood. This is always a bit of a frustrating feeling – knowing you want to give blood, but also knowing that you are not able to.

But what I can do, and I am doing today, is to give a couple small vials of my blood for scientific research. A couple of weeks ago I received an email from Army of Women looking for breast cancer survivors in my area to donate blood for a cancer study. Interestingly, this study was funded by Avon – so those of you who donated to support my Avon walk, this study is one of the studies your donations went to fund. The details of the study itself don’t really matter to me. What I know is that someone researching breast cancer can use my blood to help further knowledge about this horrible disease. That is one small way I can help further research. It was easy to decide to do.

So, if I cannot give blood to help someone in need, I can do my part by giving blood to support research.

How about you?

You probably have #celiac but whatever …

That is pretty much what I felt was the attitude of the first GI doc that I saw. I asked for an appointment to see this doc because I could see him sooner than the celiac specialist, but also because I wanted to get some information before going to see the specialist. I wanted to see what the diagnosis process was going to entail in the other system.

The doctor seemed to know less about celiac then I did! I brought in my various test results. He didn’t seem to know what to make of the dermatitis herpetiformis results. He saw my Antibody blood test and said it was high. That I probably have celiac. That I should ‘look it up on the Internet’!

I came prepared with questions. Mostly they went unanswered.

I asked about a referral for a dietician/nutritionist for the gluten free diet. He said they only had dietician for diabetes and that I should just ‘Google ingredients’ to see if they had gluten.

When I asked about what deficiencies I might have, he mentioned B12. I said I had some tests in March, so he looked it up and said my B12 was fine.

When I mentioned that I’m worried about osteoporosis, he commented that I should probably take a calcium supplement.

When I asked about the benefits of getting the biopsy diagnosis versus not, he pretty much said it made no difference.  What is worse is that when I mentioned acid reflux, which I’ve been treated for on and off for the last 20 years, he said that I needed an endoscopy to make sure I don’t have esophageal cancer.

So, I left the office no further along in the diagnosis path. I left feeling like the GI doc knew less about the disease then I did. I have an endoscopy booked. He mentioned that I might want to eat gluten a day or two before the endoscopy. When I looked up the gluten challenge protocol, it says two weeks, not two days!

When explaining the procedure, he mentioned being put to sleep for the 10 minute procedure. General anesthetic for 10 minutes seems like an extreme option. The way he described the procedure, I felt like I was being talked down too. Like it was nothing to be concerned about. Like the interruption in my life was not worth consideration.

I’m going to cancel the endoscopy because I do not trust that it will be done right. I don’t want to have to repeat it because the wrong things were done. I’m just glad that I’m in a place where I can see a special specialist – that is a GI doc that specialized in celiac. I have a much better appreciation for why 80% of celiacs go undiagnosed. If the way this GI doc treated me is anything like the norm, then I can see why people run away after their first appointment. Disappointed and lacking support. This is not an appropriate way to treat someone who is newly diagnosed (or undiagnosed) with a serious disease.

I’m not impressed!

Wheat is poison and other mind games #celiac #gflife

I am far from an expert at going gluten free, but I have found a few tricks to help me say no to the things that would cause me harm. The first is that when I see something tempting that is made from wheat (e.g. donuts, cookies, brownies) I remind myself that for me wheat is poison. I can then think, what a shame that they ruined a perfectly good donut/cookie/brownie by poisoning it. It may sound a little crazy, but it makes it easy to say no thank-you.

The other trick that I have, is that when I’m good, I give myself permission to enjoy a really good gluten free treat. This is where my love of baking comes in handy. I have many great recipes. One of my favorites is for flourless chocolate cake – which is more like a chocolate torte. I make it in cupcake shells so it is just the right size for a single snack. When I’m good and I avoid all the wheat temptations, I give myself permission to not feel guilty about indulging in a gluten free treat. I’ve earned it.

I am also a big fan of eating foods that naturally don’t contain gluten. It means that I spend less time trying to “replace” the gluten in my diet. I opt for rice and potatoes instead of pasta. For the last 5 or so years, my husband and I have eaten very little bread, so it wasn’t a great loss for me. I still haven’t found the right cracker to eat with cheese (instead of baguette), but for the most part I’m doing a good job of making meals that are naturally gluten free. I find that an easier process than trying substitutes and being disappointed when they don’t live up to the thing they are trying to imitate.

My biggest challenges so far have been around eating while traveling and eating in social situations. I want to be able to just join that buffet line, but I know that I cannot. It is pretty much guaranteed that anything in a buffet is cross contaminated.

I am finding some things are easier. As I mentioned above, I’m doing a much better job of controlling myself. When my willpower would have otherwise given in, and I would have just had a cookie (or two or three), I’m now able to say no thank you. When entering a food court, I’m not longer struggling with how to find a ‘healthy’ meal, or turned off by all the unhealthy options. My choice is severely limited, so it becomes much easier to make the decision. I am no longer paralyzed by choice.

Now that I have a little more time (I hope anyways) before my next conference, I am going to spend a little time figuring out snacks that can be easily carried. I have a bunch of story bought stuff – some gluten free cookies because when cookies are being given out at the conference as an afternoon snack, I really want one – but I want to also have more healthy options. And frankly, store bought pre-packaged cookies taste like pre-packaged cookies. They are not nearly as good as something that I bake myself!

So that’s my little snippet of celiac wisdom for today … think of wheat as poison, and give yourself permission to enjoy gluten free treats!

“we are all patients” … NOT #medx

One of the comments that was made, and repeated several times on the first day of the Medicine X Ed conference I attended last week was “we are all patients”.

This caused me to tweet out:

I had not really thought about the problem with this rhetoric before, but when I heard the statement I felt it. The emotional me recoiled at the statement. I felt that my experiences as someone who has undergone diagnosis and treatment for breast cancer, and someone who is figuring out how to navigate hormone therapy and celiac disease, who has spent the better part of the last year and half attending to two or more healthcare related appointments each week, was discounted as “normal”. My experience was in no way unique or special. Saying that “we are all patients” is saying that the patient experience is something that is normal.

Carolyn Thomas of @heartsisters explains it well in her post: “We are all patients.” No you’re not.

What really struck me though, was that my response to the statement was an emotional one. It wasn’t rational Becky disagreeing with the statement. It was emotional Becky feeling like my experience as a patient had been silenced and discounted. That my story was no longer an important story to be told. I was no longer an epatient ‘expert’.

Of course, academic me knows better. Academic me heard it and saw a parallel to the ‘all lives matter’ argument that is sometimes used to silence the #blacklivesmatter movement. If you are not familiar with what is wrong with the ‘All lives matter’ argument, please read this great article by David Bedrick – What’s the Matter with ‘All Lives Matter’.  It is, perhaps, because I had read that article that I saw the parallel in what was happening at Medicine X Ed.

I’m kind of sad that my tweet didn’t get more favorites or retweets. I think it is important that we stop saying ‘we are all patients’ at medical conferences and within medical education. Unless you’ve experience critical/chronic illness, you cannot even begin to imagine what it means to be a patient.

Exhausted … and still learning to navigate conferences …

Yesterday I attended the Medicine X Ed conference up at Stanford. I had planned on attending all day today too, but by the time I got home last night I was exhausted. My body could not handle another full day (12 hours of conferencing when you include the drive time to and from site). Then I thought back on the last couple of days and realized why I was so tired.

Monday I spent too long at doctors appointments. Mostly this was a screw up at the Infusion Treatment Center. I’m trying out Lupron (ovarian suppression) in small doses to see how my body reacts to it. This is the next stage of hormone therapy to help prevent the breast cancer from coming back. Because it was not a typical dose, the main campus pharmacy didn’t have it. Rather, they had some at the South Bay campus – and so, after wait more than 30 minutes, I hopped in the car and headed down to south bay. It turns out they were not exactly ready for me when I arrived, and I spent another 2 hours waiting for a needle that takes about 2 seconds to give.

Tuesday started with an early morning physical therapy appointment for my back (note, they don’t do physio therapy, they do physical therapy – it is mostly targeted exercise and stretch). I went to South Bay as I had a derm appointment there first. In preparation for the derm appointment I’d eaten a little gluten on Sunday and Monday. I thought I had one blister which wasn’t in an idea location for biopsy. Sitting in the chair, talking with the derm, showing her my various rashes which had gotten much worse in the last two days, a light went on. The rashes were caused by the gluten – dermatitis herpetiformis. This was why I’d eaten the gluten in the first place. So, she did a biopsy of a couple of points on my stomach – 4mm skin samples, which are now stitched up. I need to return in two weeks to have the stitches removed. After the biopsy (which again, meant I was in the derm office for 90 minutes instead of 15), I went upstairs for my second Lupron injection. This wasn’t as long as the last time, but still not fast – 30+ minutes.

So, the first two days of my week were spent mostly in health related appointments.

Wednesday I was up early so that we (my friend Stacey and I) could drive up to Medicine X and arrive before everything started. I had my third Lupron shot just after lunch. This time I was in and out of the ITA in less than 10 minutes.

The conference yesterday was great, but it was also exhausting. There was a bit of a mix up at lunch, which was already planned to be late in the day. I didn’t bring enough snacks. There were no gluten free snacks other than a little bit of fruit, which was snatched up quickly and not refreshed for later breaks. The conference organizers were very responsive to the oversight with catering, but still, it caused an extra challenge to the day.

And so, I had to make the call to skip out on the morning sessions of the conference. There was one session I really wanted to attend, so I’ll try to catch up with the organizers of that session at lunch (thank-you Twitter for giving me a way to reach out to the presenters). I’m suffering a little from FOMO (fear of missing out), but the reality is, I need to take care of myself. I don’t have the stamina that I used to have. I cannot figure out whether the fatigue is caused by the gluten, the lupron, low blood sugar from not eating right, or just plain doing too much).

The good news is that I seem to be tolerating the Lupron well, which means I can move onto the next step for hormone therapy – which sucks, but for me, it doesn’t yet suck as badly as the tamoxifen.

 

Celiac, gluten sensitivity, and wheat allergy

I have tried to find a good way to describe the difference between celiac disease and a wheat allergy – but first I had to figure it out myself.

I knew that a wheat allergy is an allergy. Celiac is an auto-immune disease. The simplest way to explain it, is that when someone with a wheat allergy eats wheat, the body attacks the foreign substance – wheat – and reacts with inflammation. The bodies goal is to eject the thing in which it is allergic to. Celiac disease is quite different. What happens with celiac disease, is that when the body tries to digest gluten, it turns on itself and attacks the villa in the small intestine. So, rather than an allergic reaction where the body tries to eject the thing it is allergic to, the body turns on itself, causing serious internal harm.

I did find this great resource – http://gastro.ucla.edu/site.cfm?id=281 – scroll to the bottom for the chart.

One of the challenges with celiac is that you can be doing damage and not know about it. I don’t necessarily have clear symptoms when I eat wheat. It doesn’t feel like a wheat allergy. It doesn’t even feel like a gluten sensitivity (which is someone somewhat clouded in mystery – it is poorly understood, and some recent literature suggests that it might not actually be the gluten that people are sensitive to, rather a different substance in the wheat). In some cases, for me, it feels like nothing. In some cases, I get blisters. The problem is, even without symptoms, my body could be turning on itself, causing damage. I just don’t know.

I do know, that I was doing pretty well on a gluten free diet for the last three weeks. I had to eat a little gluten yesterday and today. It was actually really hard to figure out what to eat. I had conditioned myself so much that gluten is poison. I wanted to make sure that if I did eat gluten, that I made it count – I might as well eat something that I’m really missing, cause I won’t be eating gluten again anytime too soon. Today’s bit was just enough to hopefully have some new blisters, as I have a dermatologist appointment tomorrow, and if I have blisters, they can do the appropriate biopsy in order to officially diagnose dermatitis herpetiformis. This is just one more piece in the puzzle which I expect (I know) will lead to an official celiac diagnosis.

Survivor guilt or …

The other day a reporter asked me if I experienced survivor guilt. I really would not call it that, but I definitely have been feeling something. It feels more like I’m acting like a spoiled child or ungrateful or something.

You see, my breast cancer was the most common kind of breast cancer (hormone receptor positive). It is also the type of breast cancer that has the most tools to help fight it. First it was chemo, then surgery, and now onto hormone therapy. It is a bit of a misnomer really, it should be called anti-hormone therapy, as the therapies suppress your bodies ability to make hormones – because it is the hormones that feed the type of cancer I’ve had.

But a little part of me kind of wishes I had triple negative cancer, so that I wouldn’t need to deal with hormone therapy. Of course, I should really just be grateful that I’m alive – triple negative breast cancers don’t have the option of hormone therapy. It is not known what feeds the triple negative breast cancers, so there is no easy way to starve it.

I feel a little like a spoiled child. I have treatments that significantly reduce the risk of my cancer coming back, and yet, I find myself debating. I find myself wishing that I did not have to undergo these treatments.

I’ve enjoyed the better part of two months with my body’s return to almost normal hormone levels. I say almost normal because chemo messed things up. I’m in peri-menopause because of chemotherapy. But even menopause isn’t enough. To be protected, to reduce the risk of the cancer coming back, I need to take medications that stop the production of hormones (Estrogen specifically). It sucks. I feel like a two year old about to have a temper tantrum!

I don’t really feel survivor guilt. I’ve only known one person who has passed away (crossing my fingers as I know that cannot remain such a low number), but she had triple negative breast cancer. She didn’t have the safety net of hormone therapy. And she died so very quickly – less than a year from diagnosis.

In the mean time, I totally missed my 9-month cancer free anniversary. It is, however, a bit of a milestone. Six months is one of the blips in the survivorship statistics (that is, a significant number of breast cancers recur at about the six month mark). I’m over that bump. Next bump isn’t until the five year mark.

But alas, my first attempt at hormone therapy (tamoxifen) didn’t work out. The headaches and mental fog meant that it was completely untenable. So now, I’m onto option b. I started today. After several mix ups, I’ve had my first low dose shot of lupron. So far, so good. If it works out, then I’ll go to a month long shot. Lupron shuts down the ovaries. Some young women take it before chemotherapy to help protect their bodies, in hopes of being able to conceive a child when they are finished with treatment. I’m taking it because it is unsafe to take an Aromatase Inhibitor while your ovaries are still producing estrogen.

And so, I begin the next round of silent treatment – it isn’t really considered treatment, as I’m cancer free. The purpose of hormone therapy is to reduce the chance of recurrence. I’m glad to be taking baby steps in this, but it is frustrating that it is needed. I am able to do something, so that is good, but it still kinda sucks. I am so ready to just move on to the next phase in my life!