Category: Emotional Journey

One more chemo day done!

Today was a busy day up at Stanford. I had an oncology appointment, chemo infusion, and then a workshop on make-up (sponsored by Look good feel better). I’ll talk about the first two here, and the latter in a separate blog post.

The good news from the oncology appointment is that the thing my oncologist felt in the right breast last time isn’t there anymore. So now, both of my breasts feel like ‘normal healthy breasts’ rather than breasts with tumors in them. This doesn’t mean that all the cancer is gone (they cannot tell that until they remove the breasts and do pathology on the breast tissue), but it does mean that the chemo has significantly reduced the size and texture of the tumors. In short, the chemo is working.

We decided to reduce the amount of steroid I’m taking. My oncologist thinks that several of the side effects (including the chemo brain) are worse or caused by the change in levels of steroid in my system – so the side effects happen when the steroid wears off. If there is less steroid to begin with, then the change will be less and therefore the side effect less. It is an interesting argument (and not at all intuitive). So now I’m taking less of the steroid and taking it in pill form rather than IV (it means the infusion actually takes longer as I need to wait 30-minutes after the premeds, which I didn’t when all the premeds were IV). I think it is actually the same dose of steroid that I took for the first three rounds of AC, and I tolerated that very well. I’m crossing my fingers that this makes the chemo brain fogginess go away.

My oncologist also looked at the neuropathy (and did some tests). So far it is pretty minor, but it is starting to effect my balance. I need to start being more careful about biking, but I am still OK. I don’t think it is bad enough to stop biking with my current bikes yet. If it gets worse and for post-surgery, I’m looking into borrowing a recumbent trike, so I don’t need to worry about balance issues, but also the trike format with underseat steering is easier to get into and out of and doesn’t require me to put any weight on my arms for riding post-surgery. If the neuropathy gets too bad, then we stop the chemo and move onto surgery. I don’t really want to go that route, as it would ruin all the plans I have in place for my visit to Canada for American Thanksgiving and Hawaii for my pre-surgery memorial celebration.

On the infusion front, things were pretty routine. We’ve pretty much got things down now – and today there were no delays in the ITA (infusion treatment area), so things moved along pretty quickly. Since this regime doesn’t make me sick, I can actually get some reading / writing done while in the ITA – although we often have visitors which also provide a great distraction and helps the time to pass quickly.

So far, I’m hopeful for a stronger cycle – so much so that when I got home today I went for a swim. I’m not as strong as I was at the end of the third round of AC, but that’ll take time to come back. I swam 800m, which is a good start :-). Over the next few weeks I’ll also need to concentrate on doing longer walks – in preparation for our hikes in Yosemite for our anniversary and Mount Tam on October 11 (friendly reminder – you can sponsor us on the links below – every little bit counts – consider donating $7-one dollar for each mile hiked, $12-one dollar for T-Chemo treatment, or $20-one dollar for each week in chemo, or if you really want to sponsor us, you can buy a prayer flag for $100). Thanks.

To support Scott’s hike: http://prevention.breastcancerfund.org/goto/scottd
To support Becky’s hike: http://prevention.breastcancerfund.org/goto/rhogue

Mon September 15, 2014
Rethinking reconstruction

I had a couple of doctors updates yesterday. One with the breast surgeon and another with the oncologist. On the good news front, my oncologist said that my left breast felt like ‘a normal lumpy breast’ rather than a breast with a large cancerous tumor! This is a sign that the chemo is working. He also commented that this point we are on ‘auto-pilot’, finishing off the chemo regime with switch to weekly Paclitaxol (T-chemo) starting Labour Day for 12 weeks. It also means I have about 12 weeks to figure out surgery.

I was so confident in my decision for no reconstruction, but that confidence was built upon assumptions that are proving to be incorrect. The surgeon re-enforced my concerns about lumps and bumps. The reality is, that I’m not a skinny girl. There is only so much a breast surgeon can do – their priority it to remove the cancer and with a mastectomy to also remove all breast tissue. Even with no reconstruction, I’m looking at two surgeries – the first to remove the cancer, and the second to clean up lumps and bumps – in part because they cannot predict how you will heal. The surgeon strongly recommended a consult with plastic surgery and radiation oncology before I make a decision. So now I’m reconsidering my options.

If radiation is not necessary – then I’ll be a strong candidate for immediate reconstruction. This would mean, during the same surgery I would have my breasts removed and a procedure done to replace my breasts with something. The something is either an implant or some fat from another part of my body (usually the stomach). Breastcancer.org provides a good high level description of the different reconstruction options. Personally, I’d rather go flat then have implants – in part because my body tends to react negatively to foreign objects, but also because they need to be replaced every 10-20 years. There are a couple of options that use stomach fat (not muscle) that may actually work out for me (Diep Flap and Siea Flap). I despise how they advertise it on the comparison chart as getting a bonus “tummy tuck”, but in essence that is what happens. They move excess fat from your tummy and replant it in your breast – replacing the breast tissue with the tummy fat. If it works well, it gives a more natural look and feel as compared to implants – but the surgery time and healing time is greater.

The surgeon did a good job of encouraging me to think beyond the immediate time – think one year, five years, beyond. One of my realities is that I’m not suddenly going to become a skinny girl. That isn’t in the cards for me. So, my body will inevitably have various rolls and folds. Previously, I wrote a bit about my concern for Buddha Belly. So I need to consider, what option is going to leave me with the better self-image of my body? Since being diagnosed, I’ve enjoyed a positive self-image (more so than before diagnosis), but I don’t know if that would still be the case after surgery.

The other thing that is often pointed out is that you do not know how you will react post-surgery. You may not think of your breasts as an important part of who you are now, but that might very well change when you wake up and they are gone. This is one of the more frightening aspects of whole process. You could be ‘certain’ and wake up to discover that you were wrong. One of the common approaches is to leave as many doors open for surgery. So, rather than doing double-mastectomy with no reconstruction, they do a double-mastectomy with skin sparing techniques. The surgery takes longer, but it leaves you with more of your skin, making reconstruction easier. You can then decide later if you want reconstruction. Using this approach keeps the door open for options but also draws out the number of surgeries and the length of time you are being treated. If you make the reconstruction decision before the mastectomy and you are a good candidate, they can do the first two surgeries at once (reducing the number of surgeries and overall healing time, but increasing the healing time as compared to mastectomy alone).

So now I shall wait again, for the next set of consults, to see what my options actually are. And then, maybe I’ll make a decision, but maybe not …

Fri August 22, 2014
Persistence, Tenacity, and New Blood

This cancer journey reminds me of some aspects of our Going East bike trip – particularly during those times when persistence and tenacity are what you need to make it over that one last hill. I always thought this picture from our trip made a great motivational photo (Scott pushes the loaded recumbent bike up the mountain – you can see the sweat on his back – unfortunately the picture does not do the steepness of the hill justice). The locals thought we were crazy trying to bike over this mountain pass – but we were both persistent and tenacious and we made it!

Perhaps this is a better persistence picture (also in northern Thailand):

My point here, is this is how I feel when I’m feeling fatigued. I feel like the entire road is uphill. And although these pictures show a struggle, they also bring a smile to my face. They remind me of challenges that I have overcome. They provide me with that little extra reminder, that yes, I can do this.

Yesterday, I had my first transfusion. The AC chemo was knocking out my red blood cells (RBC), and they were not being given enough of a chance to bounce back between rounds. Folks have asked about drugs to help with RBC. Apparently the drugs take a long time (6-8 weeks) to boost production, and the side effects can be worse than the side effects of a transfusion. Given the more immediate need for a boost now, it made sense. And so, I had my AC chemo on Monday and a transfusion of two units of RBC on Tuesday. I cannot say I immediately feel better – but then the AC chemo knocks me down for a few days, so it is hard to say. What I can say is that I have more colour – my cheeks are pinker and my lips have natural colour again. I had not really realized how pale I was before the transfusion.

Unfortunately, my phone doesn’t take very good photos.

We were also serenaded by the harp during treatment, which was nice. Apparently, med students who are also musicians volunteer to play in the cancer center. This is the first time we’ve seen the harpist directly in the infusion treatment area.

The volunteers at the hospital make the nice head scarfs/hats. I discovered that it works well when the tie is on the side – kinda makes me think I should learn to read tarot cards.

So, now I have some new blood. I am still feeling some fatigue, but hopefully in the next day or two I’ll bounce back :-).

Wed August 20, 2014
Courting a new lover

Have not told anyone, but have been dating a gentleman named NED. I’m serious about the relationship – but he won’t commit and this is causing much anxiety and grief. I want to marry him and live happily ever after – but NED refuses to commit. He is an incredible lover and makes me feel alive and momentarily safe. Unfortunately, discovered that he is dating countless others – but I choose to continue our relationship. My past life is littered with commitment phobic guys – and I should know better – but I cannot resist this guy’s charisma.

He knows just when to appear, and how to look into my soul to give me hope of a future together. I cherish him for the hope he gives, and how good he makes me feel. At the same time, I despise his fickle nature and question any promise he makes. Yesterday NED accompanied me to a doc appointment and held my hand. Whenever NED appears – he always brings temporary peace and joy – but I still distrust him and feel guilty for my lack of loyalty. Can anyone relate?

Anyone diagnosed with Cancer probably already knows NED and are familiar with his charms. For those who are not familiar with NED – it is an acronym for: No Evidence of Disease. (by Cathy Foster)

Sat August 16, 2014
#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
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
Meltdown

Last night I allowed myself to go down an emotional spiral into an all out meltdown. I was already feeling a little sad and then took an MJ pill, and started reading the book Wild. The first several chapters of the book go through the authors feelings as she supports her mother’s sudden death from Lung Cancer (she died three months after diagnosis). The combination was NOT good given how I was already feeling sad.

I started feeling a little ‘out-of-body’ (that’d be the MJ), which made me feel like ‘this is not me’. I also started feeling really sad – mostly what was replaying in my mind was Scott watching me get sick and die – and I did not want that for him. The emotions were rather extreme. This is really the first time I had allowed myself to think about the option of myself as dieing.

I also found myself afraid. I don’t want to feel sick. I’m afraid about how the blood low will make me feel. I am still struggling with nausea – although I have good meds to keep that at bay. I was hoping to ween off of them, but that doesn’t seem to be working yet.

I am having trouble visualizing my next infusion. It will require remarkable strength to go in a second time. The first time I could go in with curiosity. I did not know how I would react. Next time, I’m going in knowing that I will have crummy days. I also go in with the knowledge that it is cumulative – so I will feel worse.

I also had trouble last night visualizing getting my head shaved. I have an appointment to do this on Thursday but suddenly the idea freaks me out. I have no real attachment to my hair – but suddenly I know that people know visually that I have cancer. I will ‘look’ the part. I cannot see myself as I will look walking out of the salon. I realized that I need to decide what I’m going to wear on my head when I leave … I need to pick a scarf …

So last night, I wasn’t feeling all that strong. I was just feeling sad. I’m highly aware of the effects of depression on my mind – and for the first time I felt that depression. I don’t think I’ll be trying out the MJ anytime again soon (or at least not when I am already feeling sad) – as I don’t need anything that heightens depressing thoughts – I need to stay strong and positive.

Fortunately, I am feeling better this morning. I’m now feeling the low that I was afraid I would be feeling. I was a little dehydrated – didn’t drink enough yesterday – which I shall work harder on resolving today. The nurse in ER on Saturday recommended pedialyte power – which actually tastes better than gatorade (she found me some samples) – but it is expensive ($1 per package – and I could drink 2-3 per day) … so will try it out on especially bad days (and chemo days) and see if I can score myself free samples somewhere in the cancer center when I’m at Stanford.

Mon July 14, 2014