Category: Navigating the new me

When the nightmare never ends

Sat November 7, 2015

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.
Gluten free medications

Wed November 4, 2015

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.
Not in the high risk category, but still …

Mon November 2, 2015

I wasn’t considered to be at high risk for breast cancer, and yet I got it. I also wasn’t considered to be at high risk for lymphedema, and I have it too.

I was high risk for celiac disease, so that diagnosis, although kind of sucky, isn’t too much of a surprise. I’m now hoping that it is my new panacea (I had hoped that the CPAP was my panacea) – that is, once my body starts to heal itself on a gluten free diet, I hope that many of my health issues clear up.

This post is more about lymphedema. A month ago (Oct 2nd), I noticed that my left hand was swollen. Having been a part of many breast cancer support groups, I knew that this was an early sign of lymphedema. Having only two nodes removed (to ensure the breast cancer had not spread), and not doing radiation, meant that I was at low risk. The only precaution I was told to take was to not allow automatic blood pressure cuffs on either of my arms – because the machines put in too much pressure. Instead my blood pressure is taken on my right leg.

When I noticed the swelling in my left arm, I immediately called my breast surgeon’s office. I saw the nurse practitioner that afternoon. I was scared. She put in an immediate (ASAP) referral to the lymphedema specialist. At the same time I called my physical therapist, who is also a lymphedema specialist.

Then all the cogs in the medical system slowed to a halt. I had to wait a week to see my physical therapist. It took almost two weeks just to get an appointment to see the lymphedema specialist. Those weeks were hell. I had no idea if what I was doing was making things better or worse. I had no information that I could trust. There is so much mis-information on the web, and so little is truly known about lymphedema.

I was glad to get in to see my physical therapist, who put my mind at ease. She prescribed a compression sleeve. I decided that if I needed to wear one that I would get a pretty one. I bought this nice patterned one at Lymphedevas.

Last Wednesday I finally had an appointment with the lymphedema specialist. He formally diagnosed it as stage 0/1 lymphedema. Now that I have it on the left, it changes what I can do on the right. I’m no longer in the low-risk category. He prescribed a higher compression level for the left arm (level 2), and the lower compression (level 1) for the right arm. I was sent over to the cancer center to pick up some new sleeves.

Now, I need to wear the sleeve and glove on the left arm whenever I’m awake (so not for sleeping but otherwise I wear the compression). I need to keep this on until the arm goes back to normal. This may never happen, or may take 6-12 months. I’ve had it for less than a week and I already notice a difference, so that is good. Wearing the sleeve is actually comfortable. My arm hurts when I’m not wear it (a dull ache). The glove makes typing a bit of a challenge, so I’m finding myself relying a little more on speech-to-text (glad it is built into the Mac OS).

On the right side, I now need to wear a sleeve prophylactically (to avoid getting lymphedema). Specifically, I need to wear it: (1) during strenuous exercise, (2) whenever I fly, and (3) whenever I travel above 4000 feet elevation. In addition, I can no longer have IVs or shots (e.g. flu shot) in either arm. I’m still OK for blood draws on the right side – although, I think that will depend on the extent of the draw – the last time I had 8 vials taken (celiac micronutrient deficiency tests), which really taxed my arm, so I think that would be a high risk activity that I would want to avoid in the future.

The new sleeves I have are from Juzo. They are the ones that the doctor recommended. They are not fun colours (skin tone), but they don’t actually look as bad as I feared they would. What I find interesting is my desire to have pretty sleeves. I’m not normally a fashion conscious person. For the most part I wear yoga pants and one of the various free t-shirts my husband picks up at tech conferences. So, I find it interesting that I’m drawn to garments with pretty patterns on them.

Going forward, I’ll wear the plain garments for exercise and when I’m at home working. I will likely switch out to something pretty for those limited times when I’m out socializing. The pretty ones may not be as effective, but they make me feel good – and for a couple of hours now and then, feeling pretty won’t be causing any harm.

In some ways this is similar to my large collection of buffs that I wore when I was cancer-bald. I found myself buying more buffs then I needed (different ones to match different outfits). They made me feel good. And so, with that, if I am destined to wear the sleeves for the foreseeable future, I might as well get a few that I like to wear.
A year later …

Fri October 30, 2015

This time last year I was celebrating the end of chemo – although I wasn’t completely certain that the chemo was done.

When I look back, I think about how optimistic I was about my recovery. I anticipated a week of worsening symptoms from chemo and then things magically getting better. I expected that my neuropathy would improve dramatically and quickly. I expected to be strong by the time I went into my first surgery.

I wish I could say that this last year has been easier than the chemo itself. Truthfully, recovering from surgery has been a challenge. More of a challenge is the neuropathy – which isn’t better. I am still experiencing bouts of worsening pain and days where there is little or no pain. I still have significant neuropathy in my lower legs and feet – especially the peripheral touch. This turned out to be a good thing the other day when they needed to do an IV in my leg – it was much less painful than an IV in the arm.

I am just now starting to get back to myself again – but struggling with so many other health issues, some of which are unrelated to the cancer, but made worse by the compromises in my body caused by the cancer treatments.

One area where there is not enough research is into the various issues that women face after the type of reconstruction I had. Every time I change into my swim suit, I am grateful for my reconstructive choice. However, sleep apnea and now lymphedema have been associated with the reconstruction. Since these conditions may or may not have developed anyways, they cannot directly be attributed to the reconstruction – however, it would still be interesting to know if there is an increased risk.

From a mental health standpoint, I am in a much better place now. The worst of it was the first six months after surgery. I’m now nine months post cancer surgery. My mental health made huge leaps when I was finally about to say I am cancer free.

From an academic standpoint, I’m likely going to be back into the PhD program in January. I’ll be doing some form of study related to blogging, pathography (illness narratives), and the impact they have on people who read blogs. I’m excited to be able to be loop in some of my work as an ePatient blogger into my scholarly pursuits. I am finding that I have my foot in many different communities, and this is causing time constraints. I cannot do nearly as much as I used to, but also, in order to do something well, I need to prioritize it and let a few other things drop. I just haven’t decided what those things will be.

And with that thought, I shall sign off for today. November is writing month – with a whole bunch of different spin offs of NaNoWriMo (National Novel Writing Month), I’m having trouble deciding which ones I want to participate in – and which ones I’ll need to let go in order to get all the other things on my to do list done!
Perplexed about not recommending clinical breast exams

Tue October 27, 2015

It is October – Breast Cancer Awareness Month – and with that comes pink ribbons, but also a lot of blog posts and public information announcements about breast cancer. It is at this time that the American Cancer Society (ACS) announced new breast screening guidelines. The detailed recommendations are available here: http://jama.jamanetwork.com/article.aspx?articleid=2463262.

What has me perplexed is the line “The ACS does not recommend clinical breast examination for breast cancer screening among average-risk women at any age (qualified recommendation).”

One of the challenges with the new guidelines is that it does not make any recommendations for the average women under the age of 45. I fit into that category. I was an average women under the age of 45. I had not had a mammogram. I found a lump by routine breast self-examination. I had regular clinical exams – which helped me to learn how to do my own self-exams. I do wonder if the patient educational benefit was considered in this recommendation?

One of the support groups that I am a part of – The Bay Area Young Survivors (BAYS) – has a statement relating to the latest guidelines that I’d like to share here (thanks Meaghan Calcari Campbell for writing this up). These speaking points reflect an ongoing discussion within the BAYS community – but I thought they were important for the wider audience (highlights are mine):

1. re: the ACS guidelines, it’s an incredibly complex topic with bitter scientific debates. For young women in particular, however, the research and treatments are significantly underdeveloped.
2. because BAYS is not a health-care providing organization, we encourage women to consult their physicians to understand the benefits and risks associated with mammograms and what is the right screening tool for them.
3. and overall, we advocate for better tools to screen, diagnose, detect and monitor breast cancer for women of all ages.
4. young women in particular face specific issues. one reason is that they often have dense breasts.
5. 80% of young women diagnosed with breast cancer find the lump themselves, suggesting that their cancer is palpable (published in Journal of Clinical Oncology, 2009). many BAYS women have found their own lump.
6. however, we have some women who were diagnosed with cancer, including between the ages of 40-45, through a mammogram.
7. so if we’ve learned anything, no matter what your age, we encourage you to be your own advocate to get the healthcare you deserve

The new guidelines do not say anything about encouraging breast self-exams. In some ways, I think this may be an area were evidence-based guidelines lead us astray. They are measuring the effectiveness of specific screening tools but they don’t account for the human element. They also don’t account for the educational benefits of the clinical exam process. Clinical breast exams may not be an effective way to screen for breast cancer (this means we need better screening tools), they are, however, a great way to educate women on how to do effective self-exams. Personally, I always worried that I was doing my self exams incorrectly (given how quickly I found my cancer, I was doing it right). My annual clinical exams helped me better understand how to do my regular self-exams.

So I am left perplexed about the new ACS breast cancer screening guidelines. They do not say anything about screening for women under 45 at average risk. Per my earlier post, the risk is still significant for women under 45:

Age 30 . . . . . . 0.44 percent (or 1 in 227)
Age 40 . . . . . . 1.47 percent (or 1 in 68)

If we aren’t doing clinical exams, and aren’t doing mammograms for those under 45, how are we supposed to catch the cancer?
Lifetime risks of breast cancer

Sat October 24, 2015

Ever wonder why, if one in eight women are at lifetime risk of getting breast cancer, that you don’t know that many women with breast cancer? Unless, of course you are a survivor yourself, or have a family history of breast cancer – in that case, you probably know a disproportionate number of women who have had breast cancer. But you are the exception not the rule.

Before my diagnosis, I knew of only a couple of people who have had breast cancer. I didn’t know anyone who had breast cancer as a young person (in breast cancer terms, anyone diagnosed under 45 is considered ‘young’). If one in eight women gets breast cancer, why didn’t I know more women? In part because the one in eight statistic is a lifetime risk statistic.

Ever since I first say a post on this topic, I’ve wanted to write about it – but I couldn’t find the original post that I read. So today, when Brandie of A Journey of 1000 Stitches posted the numbers to Facebook, I was able to ask her about the numbers. She wrote about the numbers in a post back in November last year title Um, say what? Following the trail a little further back, I found the post that I originally read, from AnneMarie at Chemo Brain… In the fog, which was published last October titled One in Eight, Sounds Great.

Thanks to Brandie, I have the original data from the NIH National Cancer Institute – http://www.cancer.gov/types/breast/risk-fact-sheet

So here is how it all works when you do the breakdown by age (from the NIH site):

According to the current report, the risk that a woman will be diagnosed with breast cancer during the next 10 years, starting at the following ages, is as follows:

Age 30 . . . . . . 0.44 percent (or 1 in 227)
Age 40 . . . . . . 1.47 percent (or 1 in 68)
Age 50 . . . . . . 2.38 percent (or 1 in 42)
Age 60 . . . . . . 3.56 percent (or 1 in 28)
Age 70 . . . . . . 3.82 percent (or 1 in 26)

These probabilities are averages for the whole population. An individual woman’s breast cancer risk may be higher or lower depending on a number of known factors and on factors that are not yet fully understood.

So, of all the women in my age range, the likelihood of one of them having breast cancer was only 1 in 68 (I drew the unlucky straw there).

I blog a little bit about why these numbers matter when I talk about the 30% to 1/3 inflation of the metastasis statics. Anytime a number is used as a scare tactic, to try to get people to take action (in this case to donate to often dubious breast cancer charities), they have a negative impact on the people who are living with breast cancer. The numbers increase our anxiety – and frankly, many of us already have more anxiety than we can cope with, we don’t need any more. So, before you throw out a statistic that is inflated as a means to scare people into donating money, please consider also the people who are on the other side of that statistic. We don’t need any unnecessary anxiety in our lives!
When can I stop poisoning myself? #celiac

Fri October 23, 2015

When can I stop poisoning myself? The short answer to that question is today! When I first tested positive for the anti-bodies (IgA Anti TTG) that indicated that a celiac diagnosis was “highly probable”, I did the research and decided to stop eating gluten. I had a two month wait to see the celiac specialist. I didn’t want to continue poisoning myself while I waited for that appointment.

At the appointment (and I realize I haven’t blogged about it), I decided to do the endoscopy. This isn’t so much about getting an official diagnosis, but rather to get an assessment of the extent of the damage. The celiac doc did recommend that I eat a small amount of gluten in order to ensure that we do get a positive diagnosis.

In addition to the endoscopy order, I also did a full micronutrient blood panel. They took eight vials of blood! The panel showed that my IgA Anti TTG “was positive for IgA antibody to tissue transglutaminase (TTG) at a high level. However, it represents a decrease when compared to the previous result and is consistent with adherence to a gluten-free diet.” This is good news. It means that my attempts at gluten free diet over the last two months have been mostly effective.

The original booking for the endoscopy wasn’t until December 7th. When I tried eating gluten again (it was really difficult to get over the mental shift of being gluten free), I found that I felt terrible. My stomach hurt. I had cramps and diarrhea. I emailed the doctor and explained that I could not spend the next two months eating gluten and feelings like crap. I now have an appointment for the endoscopy on Wednesday (Nov 28). The timing isn’t ideal, but I will be glad to have it done.

In preparation for the endoscopy, I’ve been eating a small amount of gluten. I’ve also been learning my bodies signals. I don’t often get an immediate response to gluten. I thought I was having some pain associated with my surgery reconstruction and nerve regrowth, that actually appears to be pain caused by some swelling in my stomach/intestines as it processes (or fails to process) gluten. The next day I get smelly and loose stools/diarrhea. Then comes the blisters (dermatitis herpetiformis) on my elbows, hands, and/or knees. The good news about this is that I can now identify when I have been exposed to gluten (the celiac community refers to this as being “glutened”). It means that when I’m back on a gluten free diet (starting tomorrow), I will know when I’ve accidentally been exposed, and I can then analyze the past 24-hours and find the source – like our favourite hemp protein powder which is very much NOT gluten free 🙁

This process of going gluten free, then intentionally exposing myself and watching how my body reacts, has been useful. I am learning that many of my bodies quirks were caused by the gluten. I’m also learning that when I’m on a gluten free diet, I can eat a lot of things that I could not eat before. I’m happy to report that I can now eat tomatoes (I so missed them). I am also able to eat quinoa, although I’m cautious about it – at the moment I’m limiting my quinoa intake to things I prepare myself, so that I know it has been properly soaked. I don’t want to re-create the allergy I originally developed. Once I’ve been gluten free again for several months I’ll try bell peppers again.

This is definitely a time of navigating the new me. I’m thankful that I enjoy cooking and baking. I’m thankful to have learned how to make my own chocolate from raw ingredients. It means that I don’t feel like I’m missing out. Instead, I am choosing to explore new tasty foods which are naturally gluten free.
October – it’s just another month

Thu October 22, 2015

Last year, I found myself reflecting on all the pinkness of October. I recall thinking that October will always mean something different for me. I blogged about how I wanted to kill all the tacky fundraisers and really talk about what it means to experience breast cancer – it isn’t about pink ribbons.

This year, my Pinktober experience has been different. I haven’t seen so many outwardly offensive advertising campaigns. No pink drill bits. No show your boobies for breast cancer advertisements – which is by the one, of the most offensive things one can do for breast cancer survivors, many of whom are suffering from severe issues with body image.

This year, my Pintober actually began in September. First with my presentation at the Queens University of Belfast ePatient blogging and microblogging conference (#qubept). There, I gave a presentation on the impact breast cancer blogs have on those who read them. In that presentation, I weaved in my personal story with the data I got from the survey. I really enjoyed writing in that mixed paradigm – as both a cancer survivor and as an academic. You can read my presentation here or see the recording here.

A couple of days after returning from Northern Ireland, one of the support groups that I’m a part of launched their new book “Shivering in a Paper Gown: Breast Cancer and its Aftermath: An Anthology”. One of the stories in the book (page 20) is based off of a couple of blog posts I wrote, titled “Breast that are not Breasts“. I read the story to a very packed room at the book launch.

With that, Pinktober began and for the most part I ignored it. A friend asked me to write a blog post about what advice I would give for anyone going through cancer now – along the lines of a lesson I learned that I wish I knew before treatment. She wrote a lovely post that integrated the thoughts from six women – although I’d personally change the title to add the work survivors at the end, as the lessons are not from “breast cancer” but rather from breast cancer survivors: Six Lessons Learned From Breast Cancer. It felt more like what I was seeing this year in Pinktober – more useful resources and less tacky marketing.

Another friend lunched an important project for research on metastatic breast cancer. If you have mets, I highly recommend you take a look at the Metastatic Breast Cancer project (https://www.mbcproject.org/). There is also a Facebook group for those who wish to follow using that media.

The other aspect of October that I am much more aware of this year is BRA day (yesterday). More specifically Breast Cancer Reconstruction Awareness Day. The shorthand BRAday makes me think of all things tacky about breast cancer; however, I think the movement itself is an important one. I had someone reach out to me about I post I wrote last year where I struggled with the vanity of breast reconstruction. Early in my breast cancer treatment I was completely incensed about how I was informed about breast reconstruction. Perhaps it was because it was a male surgeon who said it? Perhaps it was because he just got finished telling me I had cancer, and needed a double-mastectomy, but the “good news” was the insurance had to pay for reconstruction. It wasn’t the message I was ready to hear – but for many women it is a message that needs to be heard, because they are not getting it. They don’t know that the option is available to them.

For me, my breast reconstruction decision is every present when I swim (which is frequently). Every time I put on my bathing suit and walk out to the pool, I’m highly aware of how my reconstruction decision means that I don’t need to worry about prosthetics or how I look in the pool.

I’ve joined a swanky gym (something I can only afford because of the deal I get from the wonderful folks at Sunflower Wellness). It is more of a country club then a gym. They do, however, have good cardio machines and a great adult swimming pool. Actually, they have two 25 meter pools, the one that is adult only is a couple degrees cooler and almost always available for lane swimming – plus it is a clean salt-water pool – truly wonderful! After my swim yesterday, I notice there were a lot of people tanning or just hanging out in the lounge chairs around the pool. I felt like all eyes were on me as I walked to the change room. Feeling like I didn’t ‘belong’ in this swanky club. But, the pool is great and open all winter (my condo pool closes at the end of the month). I’m going to continue going to the gym, but will probably try to get there a little earlier in the day when the pool is area is less crowded (the pool itself wasn’t that busy).

The women’s locker room is a bit of a challenge for me. Many of the women walk around naked. I am very self-aware about my scars. I opt to be as discrete as possible when I’m changing into my swim suit or getting dressed after my shower. I don’t think that I would have had the inner strength to manage this had I not had reconstruction. Now I find myself wondering if the women in the club think that I did it strictly for vanity reasons?

I also find myself contemplating nipple tattoos. A few months ago I bought some rub-on tattoos but haven’t had the courage to try them. Now I find myself wondering if putting them on would give me more confidence at the gym? My friend Stacey talks about how the rub-on tattoos help with inner confidence. In some ways, it is part of the healing process, and part of the reclaiming process. We are reclaiming our female bodies after cancer has taken parts away. I may seem vane or trivial, but it is not. It is a small thing that we CAN do. As a ‘young’ person being thrust into menopause, having all the estrogen in my body blocked in order to prevent breast cancer recurrence, I cling to the aspects of femininity that I can control. I try to fight the side effects by exercising, and strengthening. I need the self confidence that allows me to workout at the gym, and swim in the pool, and change in the women’s locker room.

So this year, October is just a month, like any other month. It is one where I am working on both inner strength and outer strength. I am working on healing.
Decide who you trust

Mon October 12, 2015

A friend (Marie Ennis O’Connor) has asked me to blog about something that I’ve learned through my experiences with breast cancer. I went back through my blogs, looking for this story, and realized that I did not tell it. Perhaps it is because it is a learning through reflection, rather than an in-the-moment type story. An aside – perhaps it is this type of after the fact reflection that makes books about illness different from blogs about illness?

When I think back about one thing that I’ve learned, it is that treatments change over time but advice is full of ‘old wives tales’ which are often based upon older treatments. This was never more poignant than during my last round of AC chemotherapy. Throughout AC chemo, I had been suffering from nausea. I new from support group that people who tolerated it well only had nausea for three to five days. I had nausea for at least eight days. Given I was on a 13-day cycle, this meant more days with nausea then without. Now, my nausea was never really bad. When I complained to my oncologist, he asked me “when was the last time you threw up?”. Never. My nausea was never that bad, it just lingered.

The folks at support group (especially those a year or so ahead of me) would talk about different nausea meds. The meds I was on were not the meds that everyone was talking about. I found myself wondering if I should be on different meds? In my mind, a change of meds would mean less nausea. I would tolerate the chemotherapy side effects so much better.

What I didn’t realize was that these different nausea meds were the old school meds. The meds my oncologist had me on were the new ones. People in support groups, and some of the older chemo nurses, were not familiar with the new meds. The recommendations I was getting about ‘what works’ were ‘old wives tales’, and I bought into them instead of trusting my oncologist.

For my last bout of AC chemo, I tried a different combination of anti-nausea meds. My oncologist was away, so his nurse practitioner changed my meds (in part because I asked for it). I’m sure that if my oncologist was there, he would have explained that I was on the new meds, but also that they were doing their job. I didn’t know the other option was the older option. I didn’t realize that the folk lore about the effectiveness was in part just because it was the older meds. The new meds had not been around long enough to be part of the lore. With the change my nausea was no better, but the side effects of the meds were much worse. I ended up with terrible mouth sores (so bad I needed liquid morphine to manage the pain). One of my biggest regrets regarding my treatment was that I changed anti-nausea meds for the last cycle of AC chemo. I had forgotten my own advice. I had forgotten who I had decided to trust (my oncologist), and let the ‘lore’ effect my treatment.

This tale is meant to be a cautionary one. Not so much about seeking advice, but about remembering that people who have followed this path before you did so at a different time. The treatment options (and side effect management options) available to you today may not be the same ones that were available for someone else a year ago. Although older treatments may work, chances are the newer ones are better. Before changing treatment plans based upon what you are hearing on the net or in support groups, ask yourself ‘is this a old tale’? And finally, decide who you are going to trust, and trust them.
Lymphedema

Thu October 8, 2015

At some point, I hope that when I am blogging here, I’m not having to tell you about yet another new side effect of breast cancer treatment. It seems, however, that as time goes by, if it isn’t one thing, it is another.

Last Friday I mentioned some swelling in my hand. I knew the signs. The swelling wasn’t just in my hand, it was also in other parts of my arm. Since I only had sentinel nodes removed, and I didn’t have radiation, I was at low risk for developing lymphedema. Immediately upon detecting the swelling I reached out to my surgeon and my physical therapist (PT) as I knew that she was also trained in lymphedema therapy.

I got in to see the surgeon’s NP last Friday. She referred me to the lymphedema specialists for an ASAP appointment. It has been a week, and I still don’t have an appointment. I have no idea when I’ll actually get in to see the specialist. This was causing me to go insane. I was scared. I found myself worried that what is stage 0/1 now would progress to stage 2 or more before I finally got in to see someone.

Fortunately, I was able to get in to see my PT today. She was able to calm my nerves. She was also able to tell me what I should and should not do, and she prescribed a compression sleeve. She taught me how to self massage (order of massage is important – turns out I was doing it all wrong).

I’m not feeling a whole lot better in that my arm is still swollen and aches. We didn’t get a chance for any of the physical therapy – mostly the appointment was spent measuring my arms and talking about what I can to do help recover from this flare up. But I am relieved. I now know what I should be doing. I know that swimming is good, and that I don’t need a sleeve to swim. I better understand how to spot the signs of a flare up, and what to do when things do flare up.

What this also now means is that I’ll have to wear a compression sleeve when flying. Certain types of larger aircraft are less likely to be a problem (they have higher cabin pressure) but most of the smaller and older aircraft will risk a flare up if I don’t wear a sleeve. When my arm first flared last week, I immediately thought that if I have to wear a sleeve I am most definitely going to get a pretty one. More specifically, one that looks more like a series of pretty arm tattoos rather than something that tries to hide itself but doesn’t.

So I’ve ordered myself a pretty compression sleeve from Lymphedivas. It won’t arrive until sometime next week. My PT ensures me that I don’t need anything urgently – that adding self massage to what I’m already doing will be adequate treatment until I get my sleeve. Once I get the sleeve, I’ll need to wear it during the day until the swelling goes down. Then I’ll need to experiment with exercise – wearing the sleeve at first, and then trying light exercise without it. My oncologist also mentioned that I will probably want to wear the sleeve when I bike. I can see how, that some of my shoulder pain might have been an early sign of lymphedema. I now have a much better understanding of what I can do to manage it.

I still have no clue when I’ll get in to see the specialist. I may have it all under control before then!