Year: 2015

My Bucket List

I recently completed an application that asked me what is one thing that I’ve wanted to do (bucket list item) that I haven’t done yet, and why haven’t I done it?

The one thing on my bucket list is to visit the Galapagos. Now that we live in California, we are a little closer (but not really). I found myself wondering why haven’t I done it?

There are three reasons: (1) time, (2) health, and (3) cost.

I seem to find myself getting busier and busier. This is a good thing. It means that my health is improving. With improved health, I’m taking on more things. I’m teaching, I’m going back to school, and I may even be doing a little contract work. This is good.

I can no longer use health as an excuse. As time goes by, I’m getting stronger. Sure I have new health issues that throw a wrench into things, but I am also getting healthier and I’m learning to deal with the issues that I have. I need to stop using this as an excuse.

Finally, cost. This is something we can definitely manage. Especially now that I’m doing more work. I’m now contributing to our household income (although not in huge amounts, still it isn’t nothing).

One thing that I can do that helps address these barriers is to plan a special bucket list trip. Since I know that I’m not the only one who wants to go to the Galapagos, if I can get a group of 12 or so people together, we can create a tailored trip. One that does the things we want, but is also less expensive than going on a pre-arranged tour.

The other complexity of a pre-arranged tour is food. I now need to know that food included in the tour can be strict gluten free – no point in going on a bucket list trip and spending the entire time feeling crappy because the food is making me sick. This is actually one of my biggest stress issues when I do anything that I am not organizing myself.

My ideal trip would involve snorkelling every morning and hiking most afternoons – although I would be OK with switching it up and hiking in the morning and snorkelling in the afternoon. Either way, I would love to spend my days doing mostly those two activities, with perhaps the occasional afternoon kayaking or standup paddle boarding (not sure how well I can do either of those activities, but I’m open to giving them a try).

And so with that, I will start to plan my Galapagos bucket list trip. If you are seriously interested in joining, please email me. The cost would be something like airfare plus $2000-$4000 per person – I’m judging that based upon the cost of other tours. We would be looking at a customize trip, for about 12 people (allows us to book the entire boat). I’m thinking a week, probably in November 2016.

Fri November 13, 2015
Celiac … it’s a real thing

I recently asked an online celiac support group what messages they would like to send to an audience of healthcare professionals. I was really surprised at one of the answers.

People wanted a formal letter from their doctor to their family members explaining that celiac was a real thing, and that gluten cross contamination was a real problem. This is in part because I asked the question just before a major US holiday (Thanksgiving). There are a lot of people out there with celiac disease, who get really sick when they eat food that has been contaminated with even the smallest amount of gluten. I find it really sad when family members need a doctors note in order to believe the severity of the issue.

Thanksgiving is a difficult holiday for those with celiac. It is also known as “turkey day” as turkey is the traditional meal. Unfortunately, turkey is usually prepared with stuffing that is made from bread. If the turkey is stuffed with bread, then there is no way to avoid cross contamination. Another problem is that many turkeys are injected with things like chicken stock to make them more flavorful and moist. Again, these injections can contain gluten, causing the entire bird to be cross contaminated. Thankgiving is a social time, a family time, but also a really stressful time for those with celiac who end up being unable to join in the feast – especially when family members don’t appreciate that this isn’t a dietary fad, it is a real disease with real long term impacts.

I am also sad that there is very little information on celiac disease provided by healthcare providers. There is no one specialist that treats the disease – rather you have a smattering of specialists based upon the different manifestations of the disease – but typically you see a GI specialist for the gut manifestation and a dermatologist for the skin manifestation. That is, if you live someplace where you have access to specialists. Otherwise, you see your GP/PCP.

But GPs don’t necessarily have all the information about celiac disease. This led to another area of concern. Some GPs just say “stop eating gluten” and leave it at that. They don’t talk about the potential long term impacts of “cheating”. They don’t talk about (or know about) what might happen if someone with celiac keeps eating gluten. They also don’t talk about how to stop eating gluten. I am trying, but this isn’t an easy process, and I’m highly educated. I have access to some of the best healthcare in the world. And yet, as I detox from my diagnosis (which requires eating gluten), I still find myself getting accidentally exposed.

And so, this Thanksgiving if someone in your family says they have celiac disease, please be considerate. Think about providing some portion of the meal that is not cross contaminated, so that they too can safely partake in a Thanksgiving feast.

Thu November 12, 2015
“Brain Fog”

One of the side effects that some people face during and after chemotherapy (and cancer treatment even without chemotherapy) is called “chemo fog”. Heck AnneMarie Ciccarella used it as a witty title for her blog Chemobrain .. In the Fog.

Turns out that brain fog is also a side effect that some celiacs get when they eat gluten. There are other chemotherapy side effects that also overlap – the other one that is of particular interest to me is peripheral neuropathy. But anyways, let’s get back to brain fog.

During chemo, I watched a presentation on chemo brain given by Living Beyond Breast Cancer. So, I though it was interesting to read an article about gluten brain fog from the Celiac Disease Foundation. What has struck me is that post cases listed cytokines as a possible reason for the fog. The chemo brain presentation did a good job of explaining it – it suggested that similar to when you have the flu, your body releases lots of cytokines that could be the cause of the fogginess. Chemotherapy or other cancer treatments could cause an increase in cytokine activity. In those with celiac disease, gluten could cause an over production. In both cases, this can lead to a sense of a foggy brain.

For me this is just one more reason to completely cut gluten out of my diet. I am still in the ‘detox’ phase from the endoscopy. I am, however, finding that my brain is doing pretty good most of the time. I’m not in the fog that I was in when I was taking tamoxifen, which is also good.

I am intrigued by the overlap between chemotherapy side effects and untreated celiac side effects. I wonder if there is any association between chemotherapy induced peripheral neuropathy (CIPN) and untreated celiac disease? I wonder if my brain fog an neuropathy during my taxol chemo treatments might have been reduced had I known about the celiac and been observing a gluten free diet? Unfortunately, we cannot set back the calendar and try again. We will likely never know. Oh well.

Wed November 11, 2015
DNR …

DNR … it is a gift you give your loved ones, although it is a really difficult one to hear.

My father is currently being evaluated to see if he qualifies for a double-lung transplant. His current lungs have been damaged by sarcoidosis – an auto-immune disease that was likely made worse by undiagnosed/untreated celiac disease.

One of the questions that is asked when he checked into the hospital for transplant evaluation was regarding what measures they should take if something happens while he is in the hospital. At this point, he has scarring on more than 95% of his lungs. His heart is having trouble because he isn’t getting enough oxygen. He needs new lungs – or as a friend on Facebook pointed out, a set of recycled ones!

So the logical side of me totally understands his decision to be listed as DNR (do not resuscitate). After going through chemotherapy and surgery for breast cancer, I truly do understand what it feels like to be so sick you wonder just how much more of this you can take. I can understand that it isn’t about giving up, rather, it is about understanding that if there is nothing that can be done then there is no point in prolonging suffering.

It is a gift when a loved one makes this decision them self, so that you do not need to. But it sad to hear those words. It is scary to hear those words. And you hope and you pray that those words won’t need to be repeated. But it is still a gift.

Tue November 10, 2015
Training for Epic Experience …
I’ve mentioned before that I find it a lot easier to motivate myself to exercise if I have some end goal in mind. This summer that goal with first the Avon Walk, then the Peak Hike. My goal then transitioned to preparing for vacation. Now, I have my sights set on an Epic Experience – a winter camp for cancer survivors. I’ve been accepted to the January 3-9 camp where I’ll be joining other cancer survivors cross country skiing and snow shoeing in the Colorado Rockies.

I mentioned to my exercise coach that I have been accepted into the program. She has given me a couple of exercises to add to my routine to help me get stronger in advance of the Experience. So, my weekly exercise routine looks like this:
- Three times week week I go to the gym, where I spend 40 minutes on cardio equipment, I do a few strengthening exercising, then I spend 30-45 minutes in the pool swimming.
- Twice per week I spend 2-3 hours walking or hiking (usually 7-12 km).
For strengthening exercises, I am doing squats while leaning an exercise ball against a wall, and another exercise my exercise coach calls a dead bug. You lay on your back and lift your arms and legs in the air (in reverse table-top, so knees bent). Then you stretch out alternating arms and legs (so left arm with right leg, then right arm with left leg). This does a truly wonderful job of working on the abdominal muscles and kind of simulates some of the movements in cross country skiing. What’s good about it is that it is something I can do at home each night – it doesn’t require special equipment, just a little floor space!

In addition to all this, I’m hoping to get back on my bike sometime soon. I stopped riding just after my arm swelled with lymphedema. Initially, I was afraid to ride without sleeve. Now that I have a sleeve, I no longer have that as an excuse – however, with spending 3 days per week at the gym, and two days doing long hikes, that doesn’t leave a lot for biking. Especially since my body does need a day now and then to recover – and days like today where it rains most of the day are not conducive to biking – especially given that the underpasses are all full over water.

And so, for this week, my plan is 3 gym days, and 2 walk days. We’ll try and sneak in a bike day if we can manage it.
Mon November 9, 2015
Would a female doctor have written the same prescription?

The lymphedema doctor said that I needed to wear a level 2 compression garment on my left arm and hand until the swelling goes away – anytime that I’m awake. This could be 6-12 months or never. In addition, I need to wear level 1 compression on my right prophylactically when I: fly, am over 4000 feet, and when I exercise. Somehow, the original prescription for sleeves missed that I need to have one to wear while I was washing the other – especially after exercise.

He also prescribed a specific brand – Juzo. I’m not sure why that brand over any of the others. They mostly do medical grade flesh colored garments – which is what insurance pays (at least part of). What insurance doesn’t cover is nice pretty garments. The doctor didn’t say anything directly bad about the pretty colored ones, he just questioned whether or not they provided truly medical grade compression.

I find myself wondering, if the lymphedema doctor was female, would she be more in favor of the pretty colored garments? Would a female doctor better appreciate the desire to look “pretty” even while wearing a medical sleeve?

I surprise myself at my desire for vanity here. I rarely dress up. I am most often seen wearing yoga pants or hiking shorts – so why do I feel the need to have a pretty sleeve?

I also wonder if having a pretty sleeve increases compliance? I think for me it will. I’m more likely to wear something that I think is fun and pretty, then something that is dull and makes me look like I have something wrong with me … but that’s just me.

Sun November 8, 2015
When the nightmare never ends

I’m not sure why I’m thinking about this today in particular but I am.

Today I’m thinking about the strength it must take to continue when the nightmare that is breast cancer never ends. When the treatments are what you do to stay alive. How that journey is so different then the one that I am on.

I struggle a bit with a multitude of health issues that means I spend way too much time in doctors offices or shuffling between different doctors appointments. And yet I’m on the path to recovery. I’m moving forward. I’m getting stronger. I’m re-engaging with contract work, teaching, and my PhD studies. I’m planning a ski vacation, and an Epic Experience.

Perhaps it is yet another death within the breast cancer blogging community that has me rattled. Or a friend that regularly subjects herself to chemotherapy that makes her horribly sick for days, but this nightmare treatment seems to be keeping her cancer in check – at least for now.

Perhaps it is reading an article that crossed my twitter stream about what it means to take all measures at ending life. At what point do we stop the fighting and decide to let the nightmare end? I think about how it would be a luxury to be 89 years old.

It is not that I think life is a nightmare, it is that I think cancer treatment is. It prolongs your life, but also it can take your life away. I think about what I might do if the nightmare were to never end for me? And then I remind myself that this path of thinking is unproductive. I am allowed to have a brief sadness, but I cannot dwell on it. I remind myself that I do not know how I would approach the never ending nightmare, and that I hope I never need to learn how I will deal with it. For now, I shall pick up the pieces of me and move on. Take a deep breath and approach the day a new.

Sat November 7, 2015
Hidden sources of gluten
On Tuesday we had our official meeting with the dietician about celiac disease. The meeting itself wasn’t particularly insightful – but we went into it well informed to begin with. I didn’t really know what to expect. The dietician was friendly and she did ask us some questions and told us a few things. In the end, we left with a three page handout with the most important information. In addition, now that we’ve met, I can email her with questions at any time.

Looks at this experience as an educator, and reflect, I see that she did some things really well. Instead of giving us an handout with an overwhelming amount of information, she cut it down to a concise three page handout with the most important information. The information included some general guidelines for gluten free eating, a short list of what to eat, what to avoid, and hidden sources of gluten, some quick meal ideas, and three good websites for more information: Celiac Disease Foundation, Celiac Support Association, and Gluten Intolerance Group. I was aware of the first, but not the other two.

I keep thinking that I should be getting more information. I keep thinking that this should be a bigger deal. But in reality, it is pretty simple. I have an auto immune disease that is completely treatable by maintaining a gluten free diet. The challenge is figuring out all the hidden sources of gluten.

Last night I started going through my medications. I called my pharmacy to have them add “gluten” as an allergy. I was impressed when the Express Scripts pharmacist says that now that it is listed they will check all generics before sending them to me. For all the meds I already have, he gave me the phone numbers for the companies. This morning I started making calls. Sadly, the melatonin I use from Costco is not considered gluten free. Fortunately, I’ve found the CVS brand melatonin is. The meds I’ve checked so far are OK, but I have a few more companies to call. Hopefully by the end of Friday I will have checked all my meds.

Ironically, Tuesday just before the going to see the dietician I got glutened (in the celiac community, the verb ‘to be glutened’ means to have accidentally ingested some form of gluten). I asked my husband to grab a smoothly for me at the office. He grabbed one for each of us and allowed me to choose. I looked at the ingredients – one had ‘wheat grass’ so opted to not have that one. Neither were labelled gluten free. I thought that I had chosen the safe one. It had fewer ingredients and none that looked suspicious to me. I learned from the dietician that one of the ‘hidden’ sources of gluten is in “artificial flavor” and “natural flavor”. Upon returning to the car we learned that “natural flavor” was an ingredient. I can confirm (based upon my bodies reaction) that indeed the smoothy was NOT gluten free. Live and learn.

On the list of hidden sources of gluten that surprised me:
- brewers yeast
- triticale
- malt
I noticed the little gem about “artificial flavor” and “natural flavor” are not on the list from the dietician. She also promised a list of bad ingredient in medications and supplements – which I don’t have appear to have. Good that I can just send her a message on the my Health (secure email) system.

In addition, the dietician mentioned that “starch” when listed as an ingredient is suspect unless you know the source of the starch or the food item is listed as gluten-free. So, potato starch or corn starch are OK, but starch or vegetable starch is not. I’m also in the process of going through any powders that I consume – such as electrolyte drink. I’m going to have to change from my previous favorite to the Vega brand, which is labeled as gluten free.
Fri November 6, 2015
Authentic celebrity experience

I don’t often follow celebrity experiences with breast cancer. For the most part, they annoy me. They try too much to simplify the experience into a single message – often one that is overly simple, not accounting for the complexities of the disease and the women who have to face it.

It was with this not so positive attitude that I decided to watch the short clip of Angelina Jolie and Brad Pitt on the today show. I was immediately impressed with the way in which they shared her recent scare. How authentic it felt. There was no preaching about what the “right way” to be a previvor.

Previvor is a term used for those with the genetic mutation (typically BRCA or BRCA2) that puts women and men at significant risk for breast or ovarian cancer, but have not yet been diagnosed with an invasive form of the cancer. I use the term “not yet” intentionally, as some of the statistics for those carrying the gene are staggering.

Since I don’t carry the BRCA gene, I haven’t done much research into that area. I did, however, find a great too created by Stanford Researchers to help women with the BRCA genes understand the different risks based upon their age and treatment options: Decision Tool for Women with BRCA mutations.

I do think the decisions that previvors need to make are in many ways a lot more difficult than the decisions those of us with invasive cancer have to make. I didn’t really have that many choices to make. I had a lot of invasive cancer. All my surgeons agreed that bilateral mastectomy was the recommended surgical treatment. I was not having to decide to remove healthy tissue that may never develop into cancer. I had cancer in both breasts – there was nothing prophylactic about my treatment. I cannot even begin to understand how difficult that decision would be – but Angelina Jolie and Brad Pitt do a great job of helping to show the complexity of some of those emotions.

Thu November 5, 2015
Gluten free medications

You would think that given the prevalence of celiac disease, and that it is a known allergen, that medications that contain gluten would need to somehow label that fact. You’d think. You’d be wrong.

As far as I can tell, this is a problem in the US. I don’t think it is nearly the same problem in other countries where medications are better regulated. I find it interesting (and sad) that medications carry less regulation about labelling gluten than food does.

This was written back in 2013, but as far as I’m able to tell, nothing has changed since then:

To be certain a drug does not contain gluten patients with CD, non-celiac gluten sensitivities, or wheat allergies must make multiple phone calls, perform Internet searches, and/or have the pharmacist review the package insert with them. At least most of us are able to do those things. ~ Whitney Caudill, Huffington Post Blog

The issue with prescription medications in the US is amplified by the fact that each generic version of a given medication can include different fillers (some of which may or may not contain gluten), and pharmacies can change which generic the stock at any given time. There is no direct way for anyone in the chain of custody of a prescription medication to guarantee that it does not contain gluten. Ugg.

I’m not an American, but I live in the US. I get all my medical care in the US. This means that I need to deal with the issue of my medications possibly containing gluten.

There is, however, legislation currently in the works to make testing for and labelling of gluten in medication mandatory. The folks at the Celiac Disease Foundation (CDF) have endorsed the “Gluten in Medicine Identification Act“. This article from CDF recently crossed my stream “CDF Joins with Representatives Tim Ryan and Nita Lowey in Introducing the Gluten in Medicine Disclosure Act of 2015“. I’m glad to see this is being re-introduced to congress, and I have some hope that it makes it through this time! The folks at CDF have created a nice form to help you send a letter to your representative to let them know that you support the “Gluten in Medicine Disclosure Act of 2015“. Please if you are an American, I ask that you support this important legislation.

And now, as someone who is taking multiple medications as a result of breast cancer treatment and other health ailments, I must now go and look up who is manufacturing each of my medications, and then contact each of them, to ensure that the medications I currently take do not include gluten.

Then I need to go look at all the supplements I take (not too many, but a few because celiac disease means that my body isn’t absorbing all nutrients properly), and validate that they do not contain gluten. Unfortunately, the supplement industry is even less regulated that either the food or drug industry. I came across this article, which talks about how 50% of the probiotics labelled as “gluten free” contained more gluten than was safe for someone with celiac disease. In some ways I’m not completely surprised. I’ve tried taking probiotic pills before and have found that they did nothing to my stomach (or made it worse). I now understand why that might be!

To make my life a little easier, I’m going to buy my vitamins and supplements from the Celiac Disease Foundation’s Gluten-Free Marketplace. I’m going to trust that the things they have on their site are, indeed, gluten-free.

Wed November 4, 2015