Category: recovery

At a support group the other night, some of the folks mentioned that they found things got easier as time progressed. That is, it was really hard during that time of uncertainty when you first get your diagnosis, but it got easier as you were in active treatment. I hate to be the one to burst their bubble, but my reality anyways is that it has gotten a lot harder after active treatment. During active treatment your doctors want to hear about your side effects, they want to do something to help reduce the side effects you are experiencing. After active treatment, it feels more like they are abandoning you – you are not interesting anymore – and your longer term side effects are not something they want to manage.

So, for me, at this point in time, I’m finding things a lot harder than I did during active treatment. My doctors are telling me to go away and come back in 6-months, and yet I’m still suffering from side effects. I’m also having to deal with fear – the constant sense that every time a part of my body hurts I’m afraid of metastasis. Every headache, every muscle ache (bone ache), the arthritis in my back … all of it brings on a paralyzing fear of disease spread – and yet my doctors don’t want to see me anymore. I feel like I’ve become this high-maintenance patient because I want some form of follow up … I want some form of confirmation that I’m doing OK. I also want some validation that my side effects are real, and that they suck … and perhaps maybe something can be done about some of them (or not) … some of the issues will take time to get better, and there really isn’t much else that can be done … I do wonder if the doctors also feel powerless at this point? Maybe this is why they don’t want more follow-up? … because they cannot do anything about it either … only time will help heal some of my wounds.

My point is, I’m finding this time a lot harder than I found other times in this journey. I’m struggling to reclaim parts of my life, while I deal with debilitating joint aches, feet that hurt when I walk, difficulty standing up after sitting for a few minutes, and an inability to get a decent  nights sleep … I’m trying to stay away from pain meds, and for the next week (pre-surgery) need to stop my anti-inflammatory meds, which in-turn means more joint pain and more difficulty moving, and more difficulty sleeping … and it all effects my mental and emotional well being. I  struggle with not going down that rabbit hole of “what if the cancer spreads” but that fight is really difficult when I haven’t had enough sleep … maybe I just need a few more hugs … so if you see me in the next week, feel free to give me a real hug … cause right now, I don’t hurt so much physically as I do mentally and hugs really help!

I’ve been having sleeping trouble since about September. Taxol chemo seem to be the first thing that impacted my sleep. Then it was surgery. With the combination, I also gained some weight – which really annoys me – because I struggle enough with body image that gaining chemo weight that then doesn’t come off because of the other meds such as tamoxifen is just plain frustrating. When my oncologist mentioned weight gain as an issue I was annoyed – since it was the stupid drugs that he is giving me that caused it (yes, this is an emotional rather than rational response) but also, even a side remark about weight gain has an amplified effect on my body image. I will need to work on that! My husband constantly reminds me not to focus on the weight, rather to focus on the strength. I know he is right, but it is still frustrating. I am getting stronger every day, and my endurance is improving.

I know that sleep is critical to my well being – both physically and emotionally. Not sleeping well also contributes to the weight gain, which contributes to the not sleeping well. It is all a vicious cycle. What my oncologist didn’t say, was that it might not actually be the weight so much as the lack of estrogen and progesterone that is causing my sleep issues!

After the last surgery, I started snoring, and my husband noticed issues with my breathing while asleep – and so, I asked for a referral to the sleep clinic. Yesterday, I saw the doctors there. The Fellow was nice, but I really wish she would have admitted that she knew nothing about breast cancer. It became pretty clear by her questions – she clearly did not know about the effects of chemotherapy (causing a temporary or early onset menopause), nor the anti-hormone treatment. I could have helped to educate her but also provide more relevant information, had she been willing to admit she didn’t understand the treatments for the disease, or really the disease itself. Anyways, her supervisor (preceptor) was a really old guy – reminding me of the ancient professors who never retire – but he knew exactly what was up. Once he heard breast cancer, chemotherapy, and tamoxifen, he knew. He did a quick examination and said “you have a narrow airway”. The lack of estrogen and progesterone in your body, in addition to weight gain, can cause sleep apnea. In part this is why men are often diagnosed with it earlier in their life, but rarely are women diagnosed before menopause. He referred me to the sleep study to confirm the diagnosis but also said to have a CPAP on standby – cause he was pretty sure of what the outcome would be.

And so the side effects continue. I remind myself that I’m lucky to be alive, and that without the treatments that I’m receiving death was pretty much a certainty (I had a pretty aggressive cancer). I’m also lucky to have access to the healthcare that I do, and that I shall soon have treatment that will let me sleep better. I’m doing the sleep study after surgery, since they need a week to get pre-approval from my insurance, and I will need a couple weeks to recover from surgery before doing the study. So, I shall cope with a few more weeks of not great quality sleep. I am comforted knowing that it was not something caused by the anesthesia (especially given that I’m going in for surgery next week). Knowing that sleep apnea can be related to the lack of estrogen and progesterone is something that I wish I knew sooner. I would have worried less, and sought treatment for it sooner. Oh well, as Alanis Morrisette says “you live, you learn” (http://www.azlyrics.com/lyrics/alanismorissette/youlearn.html, https://www.youtube.com/watch?v=Ci5j9yQ-528).

I have been completely fascinated with how my hair was growing. I also was completely attached to it – not wanting to do anything to it – but it was so darn unruly. Adding to the complication, my eyebrows are falling out again. I knew this was a possibility – as many have mentioned the second wave of hair loss specifically the eyelashes and eyebrows. My lashes seem fine for now, but the brows are noticeably thin such that I need to use a sweatband again (yes, your eyebrows do serve a purpose – to keep sweat from dripping into your eyes).

So after my shower this afternoon I suggested to hubby that he should run the clippers through my hair. I don’t have enough new hair to justify the price of a professional haircut, but the ends were certainly more fuzz then hair. He didn’t wait for me to change my mind. He started with the longest setting (me cringing as hair fell into the bathtub), but then needed to go one shorter – so clipped it off with a number 7. It probably could go shorter yet, but I’m so attached to it I just can’t give that much up! It feels a lot thicker now and is much easier to manage. The number 7 didn’t take off all the fuzzy white bits, so the hair still looks grey, but is starting to be a little darker.

Yesterday I watched Grey’s Anatomy (spoiler alert!) – I’m one that loves my medical dramas! On it there was a patient with an incurable brain tumor who also happened to be a specialized fetal surgeon. As always with medical dramas the amazing neurosurgeon at the hospital offers some hope. This character has been on the show since the beginning of the season and finally they got to the point where they had her go for surgery. (here comes the spoiler part) After many days go by she finally wakes up. I was a little annoyed at how quickly she woke up and was chipper and her old self – as if that really happens – anyways, when she wakes up they test her for various potential issues of brain damage – for the most part she is OK, however, she is completely blind. At this point a bunch of the surgeons are all depressed and sad (and crying) like they failed but she says “I’ll learn to adapt” but more importantly, that was the point – that she was alive such that she had the opportunity to learn to adapt – so it wasn’t a sad story, rather an amazing one of survival against the odds.

I tell this story because it has a large impact on me. You see, I have yet to come to a point of acceptance that cancer would have killed me had I not done treatment. Not accepting that, means that I find myself doubting that I made the right decisions, but also regretting every ache in my body. Before cancer, I was healthy and strong – stronger than I had been in many years – it wasn’t the cancer that made me weak, it was the treatment! So, I think of the chemotherapy and surgery as a loss – the things that cancer took away from me – rather than as a breath of new life – the opportunities to continue with my life in perhaps a more focused manner than before cancer. I need to start remembering that before chemo, although I was strong, the lumps in my breasts were starting to cause pain – they hurt – I wasn’t perfectly healthy before treatment, rather I had a disease that was trying to kill me.

It is one thing to say it, but another to really internalize it. Saying it is the first step … so yesterday I took another baby step on the path towards wellness.

A friend of mine posted this Guardian Article “What do doctors say to ‘alternative therapists’ when a patient dies? Nothing. We never talk“. Let me begin by saying that I found the article to use an extreme example, which makes me think the author is trying to be sensationalist rather than talk about the issue at hand. The problem with the article is that there IS a huge dialogue going on – they just don’t call it alternative therapy, rather they call it complementary therapy and often it is exactly he same thing!

Cancer research UK provides a good definition for the difference between complementary medicine and alternative medicine (see http://www.cancerresearchuk.org/about-cancer/cancers-in-general/treatment/complementary-alternative/about/the-difference-between-complementary-and-alternative-therapies):

A complementary therapy means you can use it alongside your conventional medical treatment. It may help you to feel better and cope better with your cancer and treatment. It is important to discuss with your doctor any complementary therapy that you are thinking of using.

An alternative therapy is generally used instead of conventional medical treatment. All conventional cancer treatments have to go through rigorous testing by law in order to prove that they work. Most alternative therapies have not been through such testing and there is no scientific evidence that they work. Some types of alternative therapy may not be completely safe and could cause harmful side effects.

However, what this doesn’t say is that often the complementary therapy an an alternative therapy can be the same thing – it is just a matter of context. For example, acupuncture is often used as a complementary therapy to help reduce the side effects of chemotherapy. If someone decided to do acupuncture instead of chemotherapy, then it would be considered an alternative therapy. The same treatment could be considered either a good thing (complementary) or a bad thing (alternative).

Diets are perhaps some of the worst offenders in this realm. Again, eating a healthy diet (and a visit to the dietician) is considered complementary therapy. There are many diets out there that may be recommended by various dietitians. This quickly becomes a slippery slope – dietary research is complex and it is next to impossible to truly know how a specific diet will effect a specific person (if you want to read a good book about the issues with dietary research, check out Good Calories, Bad Calories by Gary Taubes).

My point is, what makes something complementary versus alternative is context. If you are doing it in conjunction with your medical team, then it is complementary, if you are doing it on your own (instead or inspire of) your medical team, then it is alternative.

I should point out that there are quack jobs out there that do prey on the vulnerability of patients with cancer. There should be some way to help better educate people about what is non-harmful complementary therapy and what is harmful.

I can see the draw to some of the additional therapies. During my acute treatment (chemo and surgery), I didn’t have the time for complementary therapies. I did Reiki when I had the chance during AC chemo, but once I could not drive, it was no longer feasible for me to seek out the treatments. Now that I’ve graduated to 6-months follow ups with my oncologist, I find myself drawn to more alternative/complementary therapies. In part, this is because I feel the need for something to fill the void that has been caused by my medical team disengaging in my recovery. I feel that I need to be actively doing something to help my body recover from treatment. I know that for the most part, what will heal my wounds is time – For example, the only thing that will cure the neuropathy in my feet is time (assuming it does get better) – up to two years or maybe even three. However, I don’t feel like I should just sit around and wait for it to get better. I seek out alternative/complementary treatments – physiotherapy, massage, acupuncture. In part, this is because my oncologist just doesn’t seem to care anymore or at least that is how I’m left feeling in this moment – it is not an uncommon thing to feel abandoned by your care team after acute treatment as they are no longer giving you the attention they did during acute treatment (knowing this logically doesn’t help the emotional brain deal with it) – they have moved on to focus on other people who are in acute treatment – for the most part, the only thing that will help recovery at this point is time – and so, for someone who wants to feel like they are doing something to help with recovery, I seek out alternative therapies that provide some sense of doing something … they give me hope and encouragement when I need it.

What I’d like to see is less news that intends to sensationalize alternative treatments, and more information about complementary therapies that can help fill the void when your medical team has moved on to the next patient.

One of the things I mentioned in passing during my crazy busy week last week is that I was selected to attend a free weekend retreat for breast cancer survivors. The retreat is called Casting for Recovery (http://castingforrecovery.org) and uses learning how to fly fish as the basis for discussion and processing the breast cancer journey. When I first heard about the retreat, I could not wait to add my name to list. I am truly honored to have been selected the first time I applied. Many women apply for several years before they are invited to attend.

Some of my fondest childhood memories are of fishing for trout in the creek and right off the bridge in Kemano. We didn’t do fly fish, rather we cast-and-reel fishing. I didn’t realize it at the time, but what I loved most about fishing was being on the water. It has more do with getting out in nature and exploring different rivers and creeks then it was about the fishing (although the fresh rainbow trout was always a great reward).

I was taught at a young age that I must not fish without a fishing license. In Kemano, we were so isolated that such things didn’t always make sense, but we did it because it was the right thing to do. So, every year, even when I was too young to need it, I had a fishing license.

I mentioned in my original post, that although I am very much looking forward to Casting for Recovery, it also poses and ethical dilemma for me. You see, all my life, fishing has been about food. I’ve never really practiced catch-and-release fishing. In northern BC, the fish we catch are good to eat. Mostly we fished for trout in the rivers and lakes, and for those who wanted a little more excitement, we fished for salmon. When we had our sail boat, we would go out deep sea fishing. I liked bottom fishing because I was generally more successful at it (we sometimes caught crab on our fishing lines, and often came home with fresh snapper and halibut), but it was much more exciting to go salmon fishing while under sail. My job was to “get the net” anytime we caught something. It was a crazy chaos when we hooked a fish, as we need to stop the boat from moving forward (putting it into the “hove to” position) while someone was reeling in the fishing rod and I was preparing the net to get the fish on the boat – all in a 6 foot by 4 foot space that was the cockpit of our little 24 foot sail boat.

Anyways, I digress. My ethical dilemma is that I don’t like the idea of catch-and-release fishing. I am challenged by torturing fish. It is one thing to kill a fish when you intend on eating it, but it poses another challenge to me to just hook it for sport and return it injured to the water – where it may or may not survive. I talked briefly to the person from Casting for Recovery about this. One solution that I have come up with is to fish without a hook. Fly fishing is so much more about the elegance of the motion, then it is about actually catching a fish. The motion is one that is particularly heeling for those who have undergone treatment for breast cancer – the overhead gentle movements of casting do a great job of providing drainage for a damaged lymph system as well as helping to increase range-of-motion (one of the treatments most women with breast cancer undergo is a sentinel node biopsy, which involves removing a couple of lymph nodes under the arm pits – if there is no cancer then they only remove a couple – if there is cancer, they do a full axial node dissection removing more – in either case, you have incisions under the arms that can impact your range-of-motion).

Another aspect of fly fishing that I hope we cover in the workshops is how to tie flies. Instead of buying lures, which are used in more traditional cast-and-reel fishing, part of the joy of fly fishing is to create your own flies – although this too can be a point of frustration – I remember fishing with my father and losing a fish because the fly wasn’t secured properly! Tieing flies will also prove to be interesting for me with my finger neuropathy – it involves some fine motor skills that will prove to be an interesting test. So, if I can tie my own flies, then in theory, I can create flies without hooks. That way, if a fish bites, it can still spit it out and not be harmed by the fish hook. Either way, I see myself participating in the retreat as a way to help heal my wounds – both physical and mental – it will be good for me!

My other concern is that of spending an entire weekend talking about breast cancer. I’m a bit worried about my anxiety levels as I very intentionally don’t read about cancer in the two hours before bed each night. I am reminded of the BCC conference I went to – the conference itself was good but I left on a low note – because the last speaker of the day was not uplifting. Creating a program that is well balanced and ensures that at the end people leave feeling well is difficult. But then I think, who wouldn’t want to spend a weekend at a lodge in northern California? I’m encouraged by the women who have participated in the program – and hope that it turns into positive and renewing experience for me.

I’ve updated this post on March 2, 2015 to include new instructions if you wish to participate in the sexuality after cancer blog activity.

In preparing the week 2 content on “where do you draw the line” for the Should I blog course (http://shouldiblog.org), I realized that sexuality issues are something that I don’t really talk about. As someone who had hormone positive breast cancer, I’m looking at the next 10 years of hormone blocking medications and procedures. These can have side effects that no one really wants to talk about in a public setting: vaginal dryness, atrophies, shortening of the vagina – but also other sexuality issues like reclaiming your identity as a sexual being rather than a patient, and body image after treatment.

The reality is, I don’t feel comfortable talking about these things on this blog. They are too intimate, and yet they are important topics that need to be talked about. For me, blogging is about capturing the lived experience of real people, not the medical directions of doctors or pharmaceutical companies. My point is, there are websites out there that talk about the medical aspects relating to sexuality and cancer, but there are few safe spaces to talk about the lived experience of sexuality related issue.

So, I have a new project on the go. I am looking for women who have gone through cancer treatment and what to blog about sexuality under an alias. The idea is, that anyone who wants to blog about it (there is a minimum commitment of writing three posts) can sign up for an account based upon an alias of their choosing. They can then blog about it in any form they wish, as long as they never share personally identifiable information on their posts. Once I have 6-8 women signed up, I’ll build the site. With enough different perspectives, we get anonymity and a platform to talk. I’m still working out the details. If you are a women who has undergone any type of cancer treatment, and want a blogging platform to share your lived experience with sexuality related issues then I invite you to join. To sign up, email me directly: rhogue@pobox.com (please create your alter-identity before emailing me, so I don’t know who you are). If you just have questions about the project, feel free to email me as yourself. If I don’t reply within 2-3 days, try again with the email – given the topic, some of the emails hit may spam filters. I will keep a list of participants in an encrypted folder on my computer, and I, as the site administrator, will be the only one who can match aliases to real people (something I will not share).

I will ask all bloggers to create an alter-identity before they sign up and the sign-up process will use only the alter-identity email address and name. I need not ever know who you are.

Directions for creating an alter-identity

Not everyone who has gone through the cancer journey wants to be identified as someone who has had cancer. Some of you may wish to blog but also not have your cancer blog be associated directly back to you. If you are a private person, and are struggling with how much to share, you may wish to assume an alter-identity before starting a blog. However, the power if blogging is that it shares the lived experience of the blogger. Blogs that promote products or provide ‘sage advice’ without sharing anything personal can be very shallow. You can tell when the author is authentic, and it is the authenticity of the story that makes it powerful. However, you can be authentic and share your true story without using your true name. You just need to be careful to ensure that you do not reveal specific details that will allow readers to connect-the-dots between you and the alter-identity.

Here are the steps/tips involved in creating an alter-identity:

1. Choose a new name. In order to prevent self-identification it is best to stay away from derivatives of your own name. Choose something that you will remember, as you will use it a lot.
2. Open a new email account. Use a service like gmail or hotmail to open a new email account assuming your new identity. Use only this account when interacting with your blog and anyone that comments on your blog.
3. Create your blog with your new alter-identity. Use only the name (or nicknames) you have chosen with your new identity.
4. Be aware of who you are when you browse. When using services like gmail, you are often logged in when you browse the internet. Chrome let’s you have different user profiles (see https://support.google.com/chrome/answer/2364824?hl=en). Make sure that when you are reading other cancer blogs and commenting on the blogs you are using your alter-identity. This becomes even more important if you are participating in collaborative activities like sharing Google documents and co-authoring.
5. Write with a different style than you usually do. For example, if you always write in proper English sentences, try out using a lower case i or adding some ‘texting’ words in your posts. Try writing using a different ‘voice’ than you have in your other public spaces. This is more critical for people like me, who blog on multiple platforms already, so I have a very strong public presence. Writing using the same structures would make it easier for people to identify me.
6. Avoid being too alter. That is, avoid making up too much about your alter-identity. You still want your blog to come across as an authentic experience – which means keeping your age, gender, race, etc. These things are really hard to fake, but also, changing them damages the authenticity of the story. This needs to be balanced with the next step.
7. Avoid being too specific. You do not want to include specifics that will draw attention back towards you. If you have a rare diagnosis for example, then being anonymous is much more difficult. You need to include just enough specific details for the reader to appreciate who you are, without allowing the specific details for them to actually know who you are.

Yesterday I explored Alum Rock Park (Penetencia Creek area) on my bike. It is the first time I’ve ridden in the hills since chemo. I look back and see that the first photos I shared on this blog were that of my climb up to Mount Hamilton, back on June 20 and 21st. The significance of yesterday’s bike ride was that it was the first time I have tackled hill climbing since chemo. Riding on flat terrain is a whole lot easier than riding on hills, but it is climbing of hills that gives me a good cardio and strength workout.

For a first time riding on hills, the park was a good place to start. There was very little traffic, and cars were moving slowly. I actually expected there to be more trails and a longer road. After 45 minutes I had exhausted all the paved sections. I then rode a little further on an unpaved section until that path degraded into a narrow hiking trail.

Overall, climbing felt great. I couldn’t get enough of it! It has inspired me to try to find the time before my next surgery to climb Mount Hamilton from the fire station. It should be a little easier at this time of year, as I wont be fighting the heat as much as I was back in June. My biggest issue back then wasn’t a physical limitation, more it was ensuring that I carried enough water.

My foldie looking out over Inspiration Point:

This is a giant leap forward in my recovery. Climbing Mount Hamilton will represent a significant milestone in taking back my health. I attribute part of it to having signed up for the Living Strong Living Well program at the local Y run by Stanford. Through the program I’ve been doing strength training and stretching. I am amazed at how quickly I’ve progressed since the program began the first week in February (my first exercise day was my birthday). I am so glad I live someplace where a program like this is offered. I highly recommend it!