Category: active treatment

#thisiswhatdepressionlookslike

This post has been inspired by a mix of things, not the least of which is how I am feeling at the moment. With the recent passing of Robin Williams, my Facebook and Twitter feeds have been filled with tributes but also warnings about depression. One of the Unitarian Ministers on my Facebook feed (yes I have several Unitarian Minister friends) posted a challenge to share pictures for people who suffer (or have suffered) from depression, as it helps to show the faces of depression. So, I took this picture today while I was out on my bike ride. One of the reasons I ride is to fight depression, but the fight is becoming more difficult.

I feel the need to write more about depression. The latest news regarding Robin William’s death just crossed my social media stream – that he had early onset Parkinson’s makes it seem that much closer to home.

Yesterday represented a transition (last night really) – from control to loss of control. I took the above picture in the middle of my ride. I cried for most of the first 30km. It wasn’t until that point that I finally found myself back in control. I wasn’t sure the ride was going to work this time!

Fortunately, when I felt the early signs, I began to reach out, and will have my first appointment with the oncology-psychiatrist tomorrow. It seems that at about the same time I reached out (about two weeks ago), Stanford opened a new oncology-psychiatry clinic. I will be one of the first patients!

This is not my first bout with depression. I suffered from depression for about two years (2003-2005). Within the span of a year I (1) was laid off from my career at Nortel, (2) got married, (3) bought a house, (4) started a consulting career, (5) started grad school. By spring 2003 things were looking pretty good in my life, and yet I had difficulty getting out of bed in the morning. I was sleeping in excess of 10 hours a day, and I had no motivation. I wasn’t sad, I wasn’t anemic, I just wasn’t motivated to do anything. For me, depression appeared as a lack of motivation rather than sadness.

On my bike ride today, I reflected on what I had learned about my earlier depression. First of all, I know which drugs worked! But more, I know that what threw me off balance was uncertainty in my life. Losing my job was not a bad thing, but not knowing what I’d do next was a challenge. Relaunching a career wasn’t a bad thing either, but there was just too many of life’s big changes happening to me in too short a period of time. My brain couldn’t keep up.

This time it is definitely about uncertainty, although my mom also pointed out the issue with ‘chemo-pause’ as a contributing factor. One of the side effects of the chemo drugs is a temporary an onset of menopause (young warriors call it ‘chemo-pause’). In addition to the whole uncertainty associated with having cancer, I’m also dealing with emotions that may be enhanced by ‘chemo-pause’. I’m thankful that there are now people at Stanford that understand the combination of factors involved.

For those reading this who are also in treatment Stanford, if you are having any concerns (even mild concerns) with anxiety or depression, I urge you to ask for a referral to the new clinic. They have been fighting for three years to get it established. I’m grateful that it came to be just in time for me. Referrals do take time, and medications also take time to be effective, so don’t wait until it is really bad before asking for help.

There is no certainty with cancer. Treatment is physically tough and the long road after treatment is emotionally and mentally tough. Be assured that I am well enough to know to ask for help when I need it.

Fri August 15, 2014
The mixed blessings of support groups

I have found that support groups are a mixed blessing. I have been going to two face-to-face groups, but also have ‘connected’ support groups on Facebook. The face-to-face and online groups provide different kinds of support, and I find that I need both.

The online groups provide day-to-day support and often give me quick answers to questions. These are not necessarily the answers to the types of questions you get from your doctors, but rather more real-life suggestions that make it easier to deal with the unknown and help better prepare for what is to come. For example, it never would have occurred to me to rent a hospital bed for a month, to make sleeping after surgery easier. Many people sleep in loungers, and others use wedge pillows. The general problem is that for the first few days after surgery, the ability to sleep horizontal is a challenge. I found this an issue with my port, so I anticipate it to be worse with surgery. So, now we are looking into renting a fully electric hospital bed for a month – which is truly the best of all worlds – they deliver and pick-up, and insurance might actually cover at least part of the cost. It is a much better solution than a lounger (which we don’t need), and will be cheaper too.

I’ve gone to two face-to-face groups, one for those who are newly diagnosed and in treatment, and another for young people with breast cancer. As I’m an extrovert and know very few people in the area, it is a challenge for me to get enough face-time with real people. So, face-to-face support groups give me energy – they feed me. However, timing is a challenge. The groups meet either Saturday afternoon or a weekday evening. The Saturday afternoon is often better, but as we have discovered camping to be a blessing, we shall try to do more of it, making me miss Saturday afternoon groups. Evening groups are a challenge (at least while on AC chemo) as I cannot drive home afterwards – so I need someone to come and sit for two hours (or longer) while I am in group, as I cannot guarantee that I will be able to drive home afterwards. The other challenge with the evening groups is that being around people gives me energy – then I have a hard time winding down and sleeping afterwards. Given that since chemo I have typically been in bed around 9 – 9:30, groups that often run past 9:30 and are a half hour drive home, making the drive and sleeping difficult.

Then there is the group itself. In the newly diagnosed and in-treatment group, I’m often the youngest person there. I have a young person cancer, so I often have one of the more aggressive stories (although not always – we have lots of rareness in our group). More interestingly, I can relate to the older women better on a professional level, as many of them are self-employed or professionals.

The young cancer group is full of inspiring women, but their challenges are different and they often have more aggressive cancers. It is difficult to hear women with metastatic disease speak of their journeys as they learn to accept and not fear death and those with aggressive cancers whose prognosis is in the ‘single digits’. This is much more the case with young women with breast cancer, as young cancers tend to be more aggressive in nature. I’m also one of the oldest people in the group – as I sit at that boundary. Young breast cancer is considered “under 45”, and I’m 43. So I am definitely at the edge. I’m also in a very different place professionally. Given that this is the group that meets in the evening, I find it especially difficult. Last night I came home charged with energy from being around people, but also struggling with depression as the reality of my journey sinks in (I’m thankful I’ll be seeing the cancer psychiatrist tomorrow).

With this, I’ve come to a difficult decision not to attend the face-to-face young persons groups anymore (at least not for the time being). Although there are many encouraging women in the group, it does not leave me with the feelings I need. It may be doing me more harm than good. I will stay connected with the women through the Facebook group, as I find it a good virtual group, but the face-to-face is just too challenging (it is also the group that meets in the evenings and often runs overtime, so it is too logistically and physically demanding for me at the moment).

I will make every effort I can to make the Saturday afternoon group. It has been a very supportive group. It is smaller, and rarely runs overtime. Since the group is smaller, we have more time to share and more time to ask questions, so it provides better support for me. I come home from the group feeling energized and generally in a better spirits. So, it is the group that is feeding what I need and not what I don’t. I’m also hoping we can get a Facebook group going, as I’d love the opportunity to connect with these women more outside of the 90-minutes once per week that we meet.

Thu August 14, 2014
Wondering why?

In a post today Nancy asks “Do you ever wonder why you got cancer?”

I did ask my oncologist that question, in part because not only do I have cancer but I have bilateral cancer which is rather rare. So much so, that much of the literature and support materials on surgeries talk about having a single mastectomy, which makes it more challenging for me to predict how things will go for me.

I actually posted about exactly this question back before I started treatment in “Why me? versus It is what is.”

Now I think that something in me just clicked. From time to time I question, is it my poor diet from my 20s? or drinking out of Nalgene bottles before they were PBA free? or do I eat too much food cooked on the BBQ?, or something I was exposed to while travelling in Syria or Jordan?

But for me, the reality it that I will never know ‘why me’, and even if I did, it is in the past – it is nothing that I can change now. So I come up with my own answers. For me, the answer that I like it that something just click – some rogue something caused a bunch of cells in my body to go crazy. I kind of wish someone would take interest in the bilateral nature of my disease and try to answer “why” especially because of its uniqueness – but alas, it doesn’t actually appear to be that interesting from a research perspective. I don’t have anyone knocking at my door asking me to be part of a trial or experience to help figure out why. I’ve actually been excluded from clinical trials because I have bilateral disease.

So, it is what is it … why won’t change anything. There is no point in regretting the past (I have had a pretty awesome past full of amazing experiences, so nothing to regret really). I’ll just choose to move on with making decision about how I want to live the rest of my life 🙂

Wed August 13, 2014
The more you know the less you want to know

This NPR clip (short 4 minute clip) talks about how colleagues of women diagnosed with breast cancer react regarding their personal health – http://www.npr.org/2014/08/13/340005026/how-a-co-worker-s-breast-cancer-diagnosis-affects-colleagues

In the brief podcast (I encourage you to listen to it), it talks about how knowing a colleague has been recently diagnosed with breast cancer, reduces the likelihood of women to get screened within the year or two after learning about their colleague.

I’m curious whether or not this applies to blogs as well. So women who read my blog, I’ve setup an anonymous poll (totally not scientific or anything). If you do not already have breast cancer and are female, has reading my blog encouraged or discouraged you from doing breast self-exams and doing your annual physical? Click here to respond – all responses are anonymous. I’m curious to see what effect, if any, my diagnosis has had on friends and followers.

Wed August 13, 2014
An awesome package – What you’ve done with your hair

I received an awesome care package yesterday (thanks Jen). The awesomeness began with the card, which is theme for this mostly picture post.

Receiving energy from the ancient tree while out on a short walk.

Trying to capture just how big the tree at our campsite was.

And giving it a morning hug!

Mon August 11, 2014
My Buddha Belly

It may sound dumb but one of my biggest worries about not getting reconstruction is that I’ll look funny. I’ll have a flat chest but a buddha belly. I’m more scared about the buddha belly than I am about the flat chest.

I know my choice for surgery. I know I ‘want’ a double-mastectomy. Want is such an odd word here – need might be more appropriate. I know I do NOT want to be hacked up and left oddly deformed, which is what a breast sparing lumpectomy would do. I also know that I do not want radiation. My skin is so very sensitive, that the idea of radiation burns freaks me out. So, for me, the best option is the double-mastectomy.

I also know that I do not want to go through 2-3 years of additional surgeries. When you are first diagnosed with breast cancer, the surgeon presents you with one bit of “good news”. That “good news” is that insurance is required to cover reconstruction. What they don’t tell you is that reconstruction is not easy. You are not reconstructing healthy breasts. It isn’t a simple “boob job”. Reconstruction happens after they remove parts (or all) of your breasts, and then use radiation treatments to make sure that the cancer is gone. So they begin reconstruction with less than ideal material – you are not starting with healthy breasts, you are starting with damaged breasts. The reconstruction process can (and usually does) involve several additional surgeries, all done under general anesthetic. Each brings in new risks of infection and complications.

Maybe, if I had a small mass in one breast, I might opt for a simple cosmetic surgery that in essence evens out my breasts – maybe. But I don’t have that option. I have two areas of cancer in my left breast, one rather large … which doesn’t leave much to work with. Plus I have cancer in the right breast. So radiation would mean radiation on both sides – a double whammy.

So, for me, the best possible outcome is a single surgery – double-mastectomy with nice clean matching / symmetric scars. No extra lumps and bumps, but nice and flat.

That much I know. But what scares me is the buddha belly. I have a great body image right now. I’m happy with how I look. I’m pretty sure I’ll still be happy without breasts (they are trying to kill me after all). But the belly … now that might be the challenge. I will need a new identity – perhaps after BCBecky (Breast Cancer Becky) I will become BBBecky (Buddha Belly Becky). Maybe if I can find some pride in that identity, I can be happy with my new body image. [i’m laughing through my tears as i write this].

What also scars me is metastasis. So far, all signs are that I do not have node involvement. We won’t know until after surgery. The first line of treatment for node involvement is chemo – which I’m already doing. The second line is radiation. So, if surgery finds node involvement, I may need radiation (ugh). Once that is determine, we then start to look beyond the breasts for spread. Women can live for years with metastatic disease (like 10 years). Metastatic disease is often treated with chemo that is designed to slow the spread of the disease, but the quality of life with sustaining chemo scars me. Chemo is hard. I can do it now, because I have hope that it means that when I’m done with chemo and surgery that the disease will be gone. I watch other women live with metastatic disease and go through chemo so that they can live a little longer, mostly to watch their children grow up. For them, the pain, the yuckiness of chemo is worth it. I don’t think I could do that. For the first time in my life, I truly appreciate what quality of life means. I cannot see making myself feel awful (chemo) just to live longer feeling awful the whole time. I do not have kids, I do not have a reason to want to hold on. And I could not bare to have Scott see me suffer for years just to live an unhappy life. Now, this isn’t something I need to worry about now. My prognosis doesn’t look like that … from all signs I do not have metastatic disease, but these are thoughts that I do have … and I promised myself when I started this blog that I would write these thoughts and share them, regardless of how difficult they might be read or write.

So, here is to living a long healthy life as Buddha Belly Becky … whoever that may be!

Sun August 10, 2014
A perfect morning

It’s 8 am, infants are crying, jays are squawking, there is a fine mist as the park is covered in morning fog from the ocean. It is a perfect morning at Big Basin Redwoods State Park.

Scott has actually fallen back to sleep. This is my time, first thing in the morning. I crawl out of the tent at about 6:30am, my sore back making it impossible for me to sleep any longer. I make my morning cup of coffee and read my book in peace as the campground around me begins to awaken.

I was worried about how I would sleep in the tent. It turns out I actually had one of the best nights sleep since the last round of chemo. The fresh air certainly helps, but also, with the air mattress and thermarest combo that I use, I was actually able to sleep part of the night on my stomach, something that I haven’t done in a long time.

As I write, the pretty jays are harassing each other around the campsite (you can see a couple in the tree on the right side of the picture). The make an awful noise and they are true pests. They eat the eggs and babies of the endangered marbled murrelets which nest in the area. The campsite is “crumb clean” and leaving any garbage or food out can get you an $850 fine! This year they started handing out fines and increasing the awareness campaign – but it may already be too late. There are a lot of these pesky Jays around.

In addition to the jays, and screaming children, you can hear the occasional woodpecker pecking at nearby trees.

What we didn’t see last night, a pleasant surprise, was raccoons. Last time we camped up here they were real pests (if you leave your car door unlatched, they will open it! Fortunately, we had our dinner before dusk and all food was safely stored before racoon time.

Next to the picnic table is a ring of ancient redwoods (a fairy circle). The ring is formed when an old tree dies and feeds a series of new growth. These younger trees are likely over 1000 years old themselves. It is pure magic and exactly what I needed in this moment.

And of course I need to include the requisite morning selfie.

Sun August 10, 2014
On my way back

After the abyss that is day 3 and day 4 after chemo, I feel that I am coming back to life. It is a rather dramatic transition really. Swimming on day three I struggled to swim 7 laps (280m). Today, I thought I’d push myself to make at least 10 laps, but then something clicked – the fatigue let go – and I swam 20 laps (800m).

So the real me is coming back to life. I’m still rather limited in what I can do. Blisters on my hands are re-emerging, and I have blisters on my feet that may limit walking – we’ll see how my feet feel in my new running shoes. Biking is out for a couple more days, as it contributes to the blisters – so swimming is my main exercise until that gets cut off, which by then I hope to be back on the bike and walking again.

One more cycle of AC – there is light at the end of this tunnel.

Sat August 9, 2014
So I bit the head off of the repair guy

It has been one of those kind of days. Actually, I managed to get some real work done this morning, so it hasn’t been a total write off. But I’m tired. Every little errand tires me out. My body aches and I’m nauseated. So when the repair guy called saying that he was at the front gate and wouldn’t come find my apartment, but rather required me to walk out to the front parking entrance to get him, I already was not impressed. Then mid-way through repairing the microwave he sniffles and coughs. OMG. I pretty much freaked out (internally). I texted Scott who suggested that I just ask him to leave.

You see, my immune system is compromised – not really badly – but enough that I was pretty clear when the repair guy came last week that no one was to come if they had a cold. I do not need that right now.

I did not kick him out, but when he started to ask about the co-pay, which my landlord needed to pay, I couldn’t process. My brain was not functioning. I snapped. I said, if you are sick I need to you to leave because I’m having chemo and cannot be exposed. He clearly felt bad and explained that it was just allergies because the people at the last call had a cat. But I still could not manage the mental processing of the co-pay issue. I called Scott on my cell and handed it to the guy. He was able to get the number for the property manager and deal with the co-pay issue. He politely went outside to deal with the issue and just knocked on the door to give me the receipt when it was all done.

I feel kind of bad for snapping – but I just couldn’t manage it. It is frustrating that I can handle some mental tasks really well, but others are beyond my abilities. I’m pretty sure I had the number for the property management folks someplace, but I did not have the capacity to figure out where that might be. I spent all morning working on getting my ethics submitted for my thesis project – so clearly I had some form of mental capacity – but this was just too much. Any capacity for multitasking it pretty much gone!

Ugh, chemo brain!

Fri August 8, 2014
So I did it, but I need your help

So, I did it, I signed myself up for the Avon Walk. This is a fundraising event that involves walking 39.3 miles over two days. The first day you walk a marathon, and the second day you walk a half marathon. The walk takes place through the city streets – in my case, it will be through the streets of San Francisco. As this is a fundraising walk, I need your help. In order to participate I need to raise at least $1800. So, I’m asking for your help. My fundraising page is: http://info.avonfoundation.org/goto/rjhogue. I may seem like a cliche statement, but every little bit helps.

I really debated signing up for the walk. I don’t generally like these large fundraiser event type things – but I was motivated by several things. First, one of the ladies in one of my support groups spoke very highly of it. She said she found a lot of encouragement in the crowds that gathered to cheer them on. It as an emotional but very uplifting experience, and that takes on a whole new meaning when you are walking as a warrior/survivor.

I looked into where the money went. I’m lucky to be located near Stanford, a center for excellence in breast cancer treatment. It is where a lot of the clinical trials happen. It is one of the few universities in the US that set the standards of treatment for the rest of the country. But I’ve also been lucky to be near Bay Area Women’s Cancer Connections (BCC), an organization that has provided me with a lot of support. There are lots of free resources that have been made available to me. I’m also very aware of a lot of women who are cancer poor. Women who have to make treatment decision based upon their finances. And I don’t even see the women who don’t get screening done or who have very limited access to healthcare. It is a real problem here – and so events like the Avon Walk providing funding for research, they also provide resources for women who could not otherwise afford them.

The final reason I decided to do it (other than the cool opportunity to see San Francisco) was the timing of the walk itself. I’ve started to look beyond treatment – I’m making the move to look ahead in my life. The walk will come at a time when I should have completed the major treatment phases of breast cancer (chemo and surgery). There is some hope that after surgery I get declared “NED” (no evidence of disease). The treatment doesn’t stop there, as I’ll be on hormone blocking medications for 10-years – but I should be disease free. As such, the walk will mark a transition – from warrior to survivor – and that is something significant and should be celebrated.

As I write this, it is day three of my third chemo cycle. I had a great visit with a friend today which did a good job of distracting me from how awful I feel on day 3. Last cycle I also felt awful on day 4, so I have a reiki appointment which will hopefully fill me with healing energy and get me through this cycle. I’m truly hoping that the cumulative effect doesn’t mean I feel awful on day 5! Only one more cycle of AC to go (yay) – and my oncologist promises that T will be better! Going out today gave me an excuse to dress up and try out the stylin’ new hat and earrings my mom sent! I am amused at how much I like to dress up when I go out now – that is so not like the old me.

We are going camping on Saturday night. We have not been camping yet this summer – which is so unlike us. Having a temporary disability permit has been a life saver for me. It has meant that I can run errands even when my energy is low, but it also means we can go camping this weekend. The California State parks set aside certain sites that can only be used by someone with a placard. So even if all the other sites are full, no one else is permitted to use them. This meant that when I was looking for a site on Monday, there was one still available for Saturday. It is a real savior to be able to go camping at the last minute, as there was no way we could have planned in advance how I would be feeling. Honestly, I’m not 100% certain I’ll actually be up for it – but I figure, if nothing else I can spend an afternoon reading a book in my camp chair surrounded by ancient trees – sounds pretty peaceful to me!

Fri August 8, 2014