Author Archives: Becky

Friends

I have not written in a while. I’m finding myself struggling to write, in part because my struggle isn’t really my struggle, so much as it is the struggle of a good friend.

I know few people here. I got diagnosed just after arriving, so social circle revolves around the amazing people I met at cancer support groups. But, unlike a lot of those friends, they have other friends. They have lived here their whole lives, and as a result have so many other friends, that I know are closer than I will ever be. I am a cancer friend.

Recently my hiking buddy, Lori, is dealing with the next progression in her disease. She has metastatic breast cancer. Metastatic breast cancer is the type of breast cancer that kills. It is terminal. Her life revolves around what the next treatment might be.

We started hiking together when she was on horrible chemo #1. This was a clinical trial chemo. It did a good job of stopping her cancer from growing, but it also meant that one in every three weeks she was chemo sick. The rhythm was chemo, sucky week, two good weeks, repeat. We hiked during the two good weeks.

Then that chemo stopped working. She then jumped onto another trial, of a PARP inhibitor. This one didn’t work, so she didn’t last long on that one. Then came xeloda. This one worked for a while, but caused a side effect known as “hand-and-foot syndrome” where her hands and feet went red and felt like they were burning. Her skin changed and she had no fingerprints. Her heals would crack and bleed. She described her skin as being smooth like plastic wrap. This was a pill-based chemo that she took for two weeks then had a week off. During her off week and the first week she could still hike.

While hubby and I were off on vacation, the xeloda stopped working. She had a really bad progression. It was not just tumors growing, but new tumors showing up on scans in different organs. Not good. She is now hoping to be on an immunotherapy trial starting next week. Hoping. She has not been on any chemo for more than 20 days (required for the wash-out period before joining a clinical trial). I am crossing my fingers and praying that she gets into this trial and that the immunotherapy works for her. If it does (or her next chemo does), then I’ll get my hiking buddy back – but regardless of hiking she has become a close friend and it breaks my heart when I think about losing her, but I know that is inevitable – her disease is terminal.

That is Lori’s story. My challenge has been that I have few other friends. She has a 40+ years of friends and family that want to spend time with her. I know that I am a good friend, just that she has so many people wanting to see her and very little energy to do it. I’m staying in the background, but offering up my support in any way I can. But, it is already leaving a hole in my world.

I realize that too much of my social world is either in the cancer sphere or virtual. I love my cancer friends and I love my virtual friends, but I am feeling the emptiness in the non-cancer, non-virtual sphere. It leads to loneliness, which in turn leads to depression. I know this is happening. When you add this to the weight of knowing your closest local friend is going to die, and it might be soon.

I’m struggling. I’m working on my dissertation. I’m teaching. When hubby first moved here (he moved a year before me), I started reaching out to others. I started to make friends. I was doing the emotional labor that is required to help make new friends. But then a cancer diagnosis changed that. I couldn’t go out and make new friends outside of the cancer sphere when I was in active treatment.

I’m two years out of active treatment now, and I am realizing that I need to start putting in the emotional labor of making new friends. I need to figure out what I’m doing professionally, and connecting to others that do what I do. I will try to get involved in meet-ups, so that I meet new people. Working from home makes this an extra challenge. Working on my dissertation also means that I don’t have a lot of extra time. I’m pushing to get it done, but the cost is that is that I don’t have the time or energy to seek out new connections which might lead to new friendships. But if I want to fight off depression, I know that I need to do this. Depression also slows down the dissertation process, so it does not serve me well. And so, as a first step, we are going back to church. My only non-cancer friends down here are Unitarian friends, who have started to engage with the Palo Alto Unitarian church. I’ve not been there. We will give it a try and hopefully find a new spiritual home. I think that is what I need right now more than anything, and that will help me when I have to deal with the intense grief that I know one day I will need to deal with.

If you’ve moved to a new place, what have you done to make new local friends? 

Normalization of surgery and toes

It struck me the other day that the whole concept of surgery has been normalized for me. I knew this about breast cancer surgeries – where the talk of lumpectomies, mastectomies, and reconstruction are just normal part of my vocabulary, but I didn’t realize how that also influenced other areas of my health.

When my big toe pain came back (I have osteoarthritis in my big toe – I had a surgery about two years ago to clean out the joint which did relieve some of the pain), I went back to see the pediatrist. He recommended a synthetic cartilage implant (www.cartiva.net) that has recently been approved. What is interesting to me is that the studies were done in Canada and the UK.

What struck me was that the idea of the surgery didn’t bother me in any way. The whole idea of getting a cartilage implant seemed cool more than anything else.

I’m finding myself wonder, if my willingness to do this is in part because the whole idea of surgery has been normalized for me? I’m not worried about it. It doesn’t feel odd in any way.

It is also interesting that I didn’t want implanted breasts, but I’m OK with implanted cartilage in my toe. I think part because the alternatives aren’t any better. My toe pain is back. It can be problematic at times. The surgery I had two years ago relieved some of the pain, but not all of it – and my range of motion isn’t great. The x-ray showed that the arthritis grew back. The pediatrist doesn’t think doing the same surgery again makes any sense, because it will just grow back. We knew when we did it, that is was just a stop gap. The idea was that it would give me 5-7 years before needing to fuse the joint. I didn’t get that long, but this option is much better than fusing. It it doesn’t work, then fusing is still an option, so it doesn’t take that off the table. So, logistical me says this is the right choice.

Do you find that breast cancer surgeries have made it easier for you to approach other health issues?

Eclipses

They say that seeing a partial solar eclipse is nothing like seeing totality. xkcd sums it up nicely in this image:

CC-A-NC – retrieved from https://xkcd.com/1880/

This was the start of our vacation. We had a crazy rush drive north to ensure we made it into the path of totality. We took a few pictures before totality, but when it happened, we spent the entire time (about 2 minutes) just staring up in awe of what we were seeing. We figured the professionals would do a much better job photographing and we didn’t want to waste precious time mucking with our cameras.

In addition to the true amazement of the moon completely covering the sun, we also noticed that our shadows were more defined. The edges were much sharper. The light was interesting and different. Then there were the birds. We were in a National Forest, and we noticed just before the eclipse we could hear all the night birds but also all the day birds at the same time. The forest got loud with the sound of the birds (but although we could not see other people, we could hear them as they were in awe of the eclipse).

Here is a gallery of some of our best images (in order):

Fortunately, we were on vacation and could wait an extra day where we were camping, so we avoided all the crazy traffic after the eclipse. We sat around at our campsite, relaxing, reading, and taking in the nature all around us.

Nancy’s summer blog post challenge

Thanks to Marie’s weekly round-up, I did not miss this year’s summer blog post challenge from Nancy.

This year’s challenge involved answering 10 questions. I found myself linking back to blog posts. My research involves analyzing my posts for the first 8-months, so I am very familiar with what I wrote in that timeframe. I’m looking forward to this being done, so I can do the analysis for the first year post treatment, as I learned a lot more in that timeframe. Anyways, here are the challenge questions and answers.

1. Share anything you want about your cancer diagnosis (or your loved one’s). Share your age, cancer type, stage, when you were diagnosed, family history (if any), your reaction, how you learned the news, or whatever you’re comfortable sharing. 

The day I finished unpacking boxes, having just moved from Ottawa Canada to California, I felt a lump, except I didn’t realize it was a lump. I felt something and at first thought it was a muscle strain. After a week of feeling it, I went to my Primary Care Physician (PCP) who sent me for diagnostic mammogram (my first ever). The radiologist told me I had cancer, June 12, 2014. I had my first biopsy the same day as the mammo, and while I was having the biopsy the radiologist found a second mass, which was biopsied the next day (via ultrasound). The MRI found a third mass, which was also biopsied this time by MRI. I had three tumors and cancer in both breasts, each with slightly different pathology, but all ER/PR+/HER2-. I recount my diagnosis story several times on my blog, this is one of the better posts: Auspicious dates and my diagnosis story.

 2. What is the most outrageous thing someone has said to you about your (or your loved one’s) cancer?
“If I had cancer, I would not do chemotherapy”. An AirBNB host suggested that I got cancer because I ate meat, but also said that she would not do chemotherapy. Writing the blog post about it actually turned into an epiphany for me, and helped with my mental health, as I realized that my reaction after diagnoses was not at all what I thought it would be before I was diagnosed – so now, I don’t catestrophize as much about getting METS, because I know I cannot plan how I will react.
3. What is your biggest cancer pet peeve? I know it’s hard to choose, as there are many to pick from, right? But what irks you the most?
My biggest pet peeve is around diet – which is in part why the above angered me so much. I now know that I have celiac disease, so most dietary advice doesn’t apply to me. I just get bothered when people suggest that diet has any link to recurrence.
4. What is something you want others to know specifically about breast cancer?
That a lump doesn’t feel like a lump – that what you are looking for is actually a change – so get to know your breasts. I checked mine every time I showered, so I noticed the difference quickly – see Breast cancer pet peeve – it is not a “lump” (public service announcement)
5. If applicable, do you worry about recurrence rarely, from time to time or a lot? What is your biggest worry today, right now, this minute?
I worry a lot less now, but about once every 2-3 months I spiral down hill and am convinced it has spread. I usually need to see a breast oncology person (nurse practitioner, surgeon, or oncologist) in order to convince myself that I’m OK.

With each new pain I wonder, and when I don’t get enough sleep my anxiety gets the best of me. I’ve learned to recognize when this happens and how to manage it (usually taking something that helps me get a good nights sleep).

6. Do you feel cancer has made you a better person? Yes, I know this a loaded question. If you do, specifically in what way?
Cancer has made me a different person. I am much more empathetic than I was before cancer. I much prefer to say that cancer has afforded me opportunities. Arthur Frank says it well “illness is an opportunity, though a dangerous one” (Frank, 1991, p.1). Cancer helped me find meaning in my PhD studies, which I had lost just before diagnosis.

7. What is your favorite cancer book? (No, I’m not fishing for mentions of mine!)
I loved Teva Harrison’s book, In-Between Days:  a memoir about living with cancer, which I received thanks to Nancy’s Draw on her Book Review Post. She is amazingly talented, but it also gave me a little insight into the diagnosis experience in Canada. I got a lot of insight reading Arthur Frank’s At the Will of the Body. I have also read Audre Lorde’s The Cancer journals, and Cancer in two voices, by Sandra Butler and Barbara Rosenblum.

8. Besides your family, where do you turn for emotional support?
I have some online friends who I can text or chat with at almost any hour of the day, but also my hiking buddy, Lori Wallace, who lets me unload my crazy thoughts while we walk in the woods.

I also I have a great onc-psych nurse practitioner that manages my meds and has introduced me to cognitive behavoir therapy which really helped me.

9. How many cancer blogs do you read and why do you read them?
I wish I had more time to read them, but right now I’m mostly focused on writing my dissertation. I follow Becky’s blog, in part because I know her from a face-to-face support group, and I follow Marie’s weekly roundup which is how I found this challenge.

10. Do you call yourself an advocate? If so, what drives you?
Yes. I realized that I really like helping young survivor’s navigate through treatment – mostly helping them learn what it means to live with breast cancer, but also how to make decisions about treatment. My experience helps me know how much information to provide at the various phases of the breast cancer experience. I listen and provide support at the time when everything is chaos. I also like helping women navigate the first year post treatment and all the mental daemons that pop up during that time. I’m not a medical professional, and I have no interest in training in that area. I do have expertise in living with breast cancer, and it is that expertise I want to share. When I’m finished my dissertation, I’ll be looking at ways I can do that work and still make a living.

Normalization of ‘young’

I have said before that with all the talk about surgery in the breast cancer community, the idea gets normalized. That is, if you are part of support groups, you talk about various aspects of surgery a lot. Surgery is the primary treatment for breast cancer. It is the treatment that all early stage patients experience. There is still a lot of fear around surgery, but a lot of the aspects become normalized.

What I realized was that I also seem have normalized the idea of young. Breast cancer is predominantly a disease of post-menopausal women. It is rare to get breast cancer before you are 50, and yet it happens. Because of this, I am part of a couple young survivor groups, where those diagnosed under 45 (or 50) talk about issues that are slightly different to older women. Some of the women in my support group have young children, others are of childbearing age and having to make difficult decisions about having a baby or staying on anti-hormone therapy. Then there are the economic issues and employment issues.

But back to my point. When people look at me and see the ‘cancer sucks’ stickers on my laptop, they don’t connect me with breast cancer. I remember during my first infusion, sitting in the chair in the ITA (infusion treatment area) and the gentleman sitting across from me said I was too young to be there.

It is also a weird age to have cancer. You are not a childhood cancer survivor, and yet you are too young to have cancer. It is odd.

But since most of my community in the breast cancer world are young survivors, it means I get a sense that being a young survivor is normal. It means that when I see and hear about other breast cancer survivors, I assume they are young. In my mind, the picture of a ‘typical’ survivor is someone my age – and that isn’t true. My experiences in many ways is atypical.

It is an interesting observation.

Snake oil and cancer care

I have found myself reflecting a lot lately on how one can tell the difference between internet sites / social media posts that are sharing ‘snake oil’ versus those that are sharing legitimate treatment information.

When I talk about ‘snake oil’, I’m talking about alternative treatments that are in no way proven, but more importantly are intended to generate a profit on the backs of those who are seeking hope.

I find myself asking, what are the signs (keywords or phrases) that identify something as snake oil?

I don’t have a clear answer for that. When I hear of alternative treatments that “have no side effects”, that in part is red flag for me. When I hear of alternative treatments that “cure cancer”, that is a red flag for me. Especially in the case of breast cancer, where the word “cure” doesn’t really make sense – we go into “remission”, we don’t get cured. We won’t know if we were cured until we die of something else – but alas, that is an aside.

When I talk about snake oil, I’m generally not talking about ‘complementary therapies’ – generally. In many cases complementary therapies – given in conjunction with conventional medicine – are not the same as alternative therapies that are given instead of conventional medicine.

I’m connected to a lot of people who are active on social media in the breast cancer community. I see a lot of different things cross my stream. I find myself looking at them, and often discounting them as snake oil. Things that are clearly intended to extract money from the hands of already cash strapped and desperate cancer patients. But I also see things that might actually be helpful. Things that do reduce side effects. So how do you tell them apart?

The other challenge I have is in the desire to respect people’s decision to seek the treatment they want, at the same time as not being judgmental, especially when I see the treatments being discussed as pure snake oil. I can see something and think to myself ‘that looks like snake oil’, but I cannot always know that it is 100% true.

I’d love to be able to teach cancer patients how to recognize the snake oil, but I’m not sure I have a way to do that. I cannot say for certain that western medicine is 100% correct – we have a lot of information that we share in support groups that help us deal with side effects that are not “proven” by western medicine. Those things are not ‘snake oil’.

I guess for me, the biggest red flag is money. If someone is asking money for something, then it is suspect. Paying money for scans that your doctors don’t believe are necessary, or paying for expensive dietary supplements seem to me to not be authentic. They raise flags as ‘snake oil’ which can do more harm than good. But is money the only thing that triggers the red flag? What other things might be signs that the alternative treatment is bogus? What do you think?

Re-grounding

I cried the entire drive home from my oncologist appointment on Monday. I’m not sure if part of it was that I also had my Lupron shot, so my hormones might have made me a little more emotional than usually. But at least part of it was that I felt like the ground was pulled out from under me.

At my last oncologist appointment (5 months ago), I had asked about my change of recurrence. I didn’t like the number. I had hoped for a 5-10% number, but instead I got a 20-30% number. That shook my foundation. The mental tool I was using to hold back the fear of recurrence got disrupted.

Monday I asked about hormone therapy. You see, I’m only partially on hormone therapy. I’m doing the Lupron thing, but not the AI thing – at least not right now. Last time I tried the AI it was a bit of a disaster. I lost 3-4 days of work because I couldn’t think. I had to stop.

My oncologist talked generally about hormone therapy providing protection beyond the time you take it. They don’t really know why, but if you take it for 10 years, then the protective effect seems to be something like 15 years – so it lasts longer.

He also talked about the importance of balance and quality of life. He said that if you are low risk for recurrence and have bad side effects, then the decision is easy – stop taking the meds. But, in my case it isn’t so clear. He grouped me in the high chance of recurrence group, but also horrible side effects. He did highlight that some people just cannot manage hormone therapy. They don’t know why it causes such bad side effects in some people but not others. He highlighted that it isn’t a sign of weakness on my part. I should not feel bad that I get horrible side effects. But the part of the conversation that through off my grounding was that of putting me in the high risk category.

I also asked about neuropathy. I’m 2.5 years out, so this means that any changes will be small – that is, that I can not expect to have any drastic improvement from what I have now. So, my fear of the neuropathy being permanent seems to be the reality I’m destined to live with.

My oncologist agrees that we should be introducing one change at a time. In the fall I’m going to be changing my mental health/side effect meds. The change will hopefully also help with neuropathy and arthritis back pain. Once that change has happened, I’ll again look at re-introducing the AI (aromatase inhibitor – if you think of menopause as a reduction in estrogen levels, the AI brings the estrogen levels even lower – and since my cancer was fed by estrogen this in effect starves it). There is some hope that the new mental health med will make it possible for me to introduce the AI with limited side effects. We’ll see.

But all this has left me in need to reground myself. Hearing the “high risk” makes it more difficult for me to think about the future is a positive way. On the other hand, it also reminds me of Carpe Diem – and the need to focus more on the here and now.

I’m also feeling strong at the moment. I biked 30km yesterday. I haven’t been able to do that in a long time. A couple weeks ago we hiked 10-miles. Again, that is a huge accomplishment. So, physically, I’m starting to feel strong again. I just need to find my grounding mentally.

I’m not brave – another cancer war metaphor

With John McCain’s diagnosis with brain cancer, we are seeing discussion about cancer and the war metaphor in the media. My social media streams are full of articles like this one Obama’s tweet to John McCain about his diagnosis was the last thing cancer survivors wanted to see. The author makes an important point about how some of this encouragement is more for the benefit of the speaker than the recipient. It is the voice of someone with healthy privilege trying to find something to say that will help the healthy person feel better about the illness.

I found at one time during my treatment that the war metaphor helped me. It was not someone else telling me to fight, rather it was an internal fight – a mindset that helped me get out of bed in the morning and go for a walk. At the time I decided I was a warrior. I was in active treatment. It was a metaphor that I chose to use because at that time it worked for me. The metaphor worked for a short period of time during my treatment. But then it stopped working. I was no longer a strong warrior, rather I was weak and fatigued and just wanted the treatment to be finished.

The one metaphor that never really worked for me was that of bravery, which is also a variant on the war metaphor.  I’ve been told many times that the sharing I do in my blog is an act of bravery. That I was brave to be sharing my experience so openly, but also that my experience in and of itself was an act of bravery. Facing cancer and cancer treatment was in some way an act of bravery. Like I had a choice in it. Personally, I’d rather not be brave if it meant I didn’t have to go through the cancer experience.

The reality is that I don’t in any way feel brave. I never have. I even wrote about having my inner two year old having a temper tantrum because I didn’t want to do another chemo treatment. That wasn’t brave. It was real. 

Cancer is not only an attack on the physical body, it is also an attack on the mental one. The focus on metaphors at times helps the ill person to cope, but at other times it doesn’t help. There are times when it changes the focus from what the ill person needs (someone to listen to them, and to acknowledge the experience as it is really is), to something the healthy person needs in order to feel better about the ill person.

I have learned through this experience. I might have used the war metaphor before I was diagnosed. If I did, I apologize. I really didn’t understand.

I have learned to acknowledge the illness and the feelings the ill person is experience (I need to put in a plug for Kelsey Crow’s book There is no good card for this – as it is really a great way for people to learn how to help). My response to someone telling me that their cancer has spread is usually “well that sucks”. I try very hard to just listen and acknowledge the feelings the person is having. Sure, I slip into trying to be a “fixer” at times, but I also try to be aware when I do it. Acknowledgement that it sucks is often all the person needs – well that and some good bone broth, soup, food, or someone to clean their house.

One year gluten free #celiac #gflife

It was about this time last year that I was last ‘glutened’ (a term used by celiacs to describe accidental injection of gluten).

It has taken me a while to learn how to navigate in the world gluten-free. I was overly cautious – until I learned that my antibody counts were normal. Then I ventured out a little more. I found myself missing eating out. I found myself avoiding group activities that involved food. Once my antibodies were down, I realized I could not live that way. I needed to be able to reach out – I needed to be able to eat at more than one place.

I found the app “Find Me Gluten Free” (https://www.findmeglutenfree.com/) to be a life saver. Whenever I’m someplace unfamiliar and need to eat, I pull out my phone and open up the app. It doesn’t show everything, but it often shows several places that are reasonable options.

I’ve learned that most fancy restaurants can address gluten free. Any good chef knows how to handle cross contamination. Most places won’t ‘guarantee’ gluten free – I think that is mostly a US fear of litigation issue. Some are better than others at saying “our gluten free menu isn’t appropriate for Celiacs” … which is a way of saying that our gluten-free menu isn’t really gluten free – it is just an excuse to charge $2 extra to substitute wheat for something that might have been gluten-free when it was taken out the package, but isn’t by the time they are finished cooking it! Ya, that does sound a little cynical.

I have learned to ask for the Gluten-Free menu if a place has one. I still need to talk to the server and be specific about my need to not have cross contamination – but it saves me a lot of time and heartache, as I don’t then see items on the menu that sound good but that I also cannot eat. So I don’t feel like I’m missing out as much.

I am still nervous when I travel. I need to bring my own food for the plane, but also a bunch of my own food for snacks and for breakfast. I miss out on the “free breakfast” at many hotels because they have absolutely no gluten free options. I’ve suggested to several that all they really need to do is have some GF cereal that they don’t put out for everyone (in the little boxes) and hard boiled eggs are also a great GF option. That being said, I usually bring my own breakfast anyways, because I cannot guarantee of finding something, and I cannot risk not having anything.

What this means is that travel takes a whole lot more energy than it used to. Attending conferences (which is something that I used to love to do) is also so much more challenging, that I find myself shying away from them. My dissertation writing has been a great excuse for me to say no to several that I was concerned about. I still do go to some, but I know that I will need to carry a lot of snacks and make my own breakfasts, and not count on getting anything for lunch – which is perhaps the hardest part – going to lunch watching others eat, or not going to lunch with the group and missing out on the social / networking time.

I thought this was to be a happy post – yay 1 year gluten-free – a great accomplishment. It doesn’t feel like a happy post. It isn’t something that will ever end. Research that came out in April indicated that they may have identified a virus that turns on celiac disease. For those that don’t know, celiac is a genetic disease – if you have one of the two genes you can get celiac – but not everyone does. Plus, if you have gene it can turn to celiac at anytime – so could not have it one year, and then find that you have it the next. This research is really promising for those who have the gene but not yet have celiac disease. It may mean that a vaccine can be developed so that those with the gene never develop the disease. That is pretty awesome news and definitely a break through.

There has been some research done on a “pill” or something you can take that might make it possible for the body to digest gluten and not have it react horribly. This would be sort of like the pills you can take for lactose intolerance. It isn’t there yet – but is also promising, in that it would make it easier to eat out without having to deal with the constant fear of getting accidentally glutened. It would make travel a lot easier.

From a home front, I’ve done a pretty good job managing to keep my home mostly gluten-free. My husband has a few things that he likes, so we segregate – but mostly he gets his gluten at work over lunch. He often goes out with his colleagues, and can eat as much gluten as he likes. I don’t think he really misses it at home – but for things like hiking, I’m sure he misses the ability to make a sandwich at home (or at the campsite – although with camping he will buy his own bread – it is just that I won’t even touch it, so there is no way I’m buying it and I do most of the shopping).

And so, there you have it. I’ve lived a year without accidental exposure. Here is hoping a make another one gluten-free.

 

I’ve stopped sharing my crisis

Yet again I went through another scare. It happens much less often now. I’d say about twice a year. Something happens. I feel a pain or a lump or a bump – and my mind spins out of control. I get overwhelmed with fear.

It started a couple of weeks ago when my family doc found a swollen lymph node in my neck. This is actually quite common when you have any kind of infection. It is your body doing its job. I couldn’t feel it. I wasn’t sure what she was feeling. She tried to show me, but what I thought I felt isn’t a swollen lymph node – but it led me down that path. She was so sweet when she said, “if it is still there in 1-2 months I’ll order an ultrasound, and if it shows something I’ll refer you to an ENT for a biopsy”. Then she whispered “to rule out cancer”. It was so sweet because she didn’t just blurt it out like some doctors do. And she didn’t call is “C-A” instead of using the word. I confirmed that it was most likely a normal infection kind of swollen and nothing to really worry about.

I also had a new set of back MRIs. I’m seeing the spine specialist at UCSF on August 1st, and I wanted to make sure I had the latest information.

When I picked up the CD (I always order the CDs so I have a copy, but also needed to get a copy for UCSF), and got home, I had an all out panic attack. Chest pain, trouble breathing … I was able to sit down and calm myself down. Then I looked at the CD and the report was not on it. That annoyed me. I could see what the radiologist was pointing out, but I couldn’t tell why. I could compare it to my last MRI (almost a year ago), but without the interpretation I couldn’t tell. That freaked me out. I emailed my family doc (the one who ordered the MRI), but had to wait through the weekend for the reply. She sent along the results. The things that I was freaked out about are nothing. It is an incidental finding and it confirmed that there has been no change since the last MRI (many people have some cyst or something in various places in the spine – they are totally benign and normal). The new incidental finding is a cyst behind my kidney – I get an ultrasound of that next week. Again, this is another one of those “normal” things, that is an incidental finding from the MRI. It wasn’t there last year, but is there now, so they will look at it with the ultrasound.

But then there was this lymph node in my neck. And then I though I felt something in my under arm. And a couple days later, I thought I felt something in my underarm again. I freaked out. I did not sleep well. I emailed my oncologist and he ordered an ultrasound and biopsy if necessary. That biopsy bit freaked me out. Fortunately, I was able to get in to see my oncologist’s nurse practitioner yesterday, and he did an exam and confirmed that there was nothing there. He felt nothing at odds during the exam. I pointed out the neck lymph node – he said if he tried hard he could feel it, but it wasn’t anything that popped out as worrisome. He ordered an ultrasound of it mostly because I was crying and it freaked me out.

The crying was mostly a release. It was the letting go of all the fear that had built up over the last couple of weeks.

Now, I’m annoyed at myself for this whole episode. I want that whole cycle to stop happening. Fortunately it isn’t that often anymore – maybe twice a year. I try very hard to convince myself that it is nothing, but it doesn’t always work. I’m a little afraid of what this will mean when I move back to Canada – will I have the easy access to my oncologist for that immediate confirmation that there is nothing to worry about? I cannot work when I’m that state of fear. I cannot focus. I have trouble sleeping. It becomes this horrible vicious cycle – the fear feeding on the lack of sleep, and the sleep not coming because of the fear.

Back to the point of this rambling blog post – I don’t share my crisis anymore – or at least I don’t share them while they are happening. I wait until they are resolved. Then I write the post. This is in part because I don’t want my loved ones to be afraid. I don’t want them to experience that fear that I have. I need them not to – because I need those around me to be ‘normal’. To not share the fear, but also not dismiss it, or not try to convince me that everything will be fine. I need to convince myself that everything will be fine. Hearing it from most others doesn’t necessarily help. Hearing it from the right other (usually an oncologist or nurse practitioner in oncology) does help.

Everything will be fine. It is what it is and that is OK. Now on to my regularly scheduled programming …