Trudge, Trudge, Trudge

Nico is almost as stressed as I am

I used to walk, then I strolled, moseyed, and now I trudge.

So the update on the fluid retention situation that started a couple of months ago is that it continues. I've gained 25 pounds of fluid, from below my chest down to my feet.

My mobility is much more limited and I have more shortness of breath. Standing still for more than a couple of minutes is difficult, even with the assistance of a cane. My appetite is lower than its usual low.  The whole thing feels cumbersome and heavy and just pretty unpleasant.

I am really grateful that I can still drive. I've got to get out of the house and it feels good to be able to do that myself (even if I can't walk much once I'm out!)

I started taking a diuretic this week to help reduce the fluid in my legs. Next week on September 1 I'll have a paracentesis done, where a doctor will drain fluid from my abdomen. I understand that will provide very temporary relief but I'll take it.

Friends and family have helped us out a lot lately. Running errands, installing grab bars in the shower, providing meals, trimming hedges, giving rides to me and to C - these have all been so great. (Most of this assistance has come from close friends and family I talk to frequently rather than the whole Helping Hands community if you're wondering whether you've been missing requests on that website).

I continue to take the non-chemo, cancer-fighting medication at home, which thankfully does not bother me. I'll have my next CT scan on September 10.

In the meantime, what I'm most appreciating now are visits at my house or yours or the occasional coffee or sit in a park where I don't have to walk much. Phone calls are good, too. An hour is kind of max for me, then I get tired. I don't get tired every hour when I'm home alone, but being social, while fun, takes it out of me. But seeing people is essential for my well-being.

I hope it will be easier for me to go to movies and out to eat soon if we can get some of this fluid retention under more control.

This continues to get harder emotionally, and I have good support to help me with that. Over the last couple of years, the anxiety and emotional stress have been at least as challenging (and sometimes much more so) than the physical difficulties of the disease and treatment.

The kids have been so great this summer - very helpful and kind - and also are leading normal teenage lives, with some physical activities like crew and swimming and a lot of screen time. They go back to school September 9. It will be M's senior year and C's freshman year in high school.

I can't say enough great things about my husband, B. He takes care of so much and always, always listens. That just scratches the surface of how awesome and strong and supportive he is. I could gush for many paragraphs. 

A Few Thoughts on What to Say to Me When You Don't Know What to Say

A few people have let me know that it's hard to know what to say to me. Should they ask about my illness? Should they let me bring it up and never mention it? Sometimes they avoid talking to me because they don't know what to say.

I get it. I myself find it hard to know what to say to people going through something really challenging, especially if we're acqaintances and not best friends.

Recently I came across this article: "How Not To Say the Wrong Thing", and I think it describes a pretty good rule of thumb.

I also think this collection of empathy cards for people with a serious illness, designed by a cancer survivor who created cards she wished she had received, have messages that are really spot on.

Personally I know that people in my life want the best for me, and if that means they sometimes say something that bothers me, I don't dwell on it. So my intention by sharing the article and the cards is not to give you a set of rules that you better perfectly follow if you want to be my friend, but rather some ideas if you're feeling unsure about what to say and not to say.

Honestly, sometimes I want to talk about it, and sometimes I don't. Sometimes I'm feeling good about my day, and sometimes I'm not. Sometimes a simple question like, "How are you?" feels almost impossible to answer - other days it's a piece of cake. It's kind of a crap shoot.

I'm always interested in hearing from you, and if something you do or say doesn't sit well with me and I feel like saying something about it, I'll do so and we'll move on! Or I will simply change the subject. I don't simmer with resentment. I didn't before I got cancer either; now I'm just better at it.

Here's the Latest

Central Park from my friend's parents' apt on the 78th floor

New York was great! I had a great time with old friends and seeing Byron and the kids and various sights. I was pretty exhausted by it all, but who isn't? That city has a lot of intense energy, especially compared to my laid-back Northwest city.

So now back to reality. I started the gemcitibine last Friday, April 17. I receive that once a week for two weeks, have the third week off, and then start a new cycle of two weeks on / one week off. I'll keep going with this and then have another CT scan in July to see what's happening.

I'm not feeling as good as I was a couple of months ago, and that has made me think more seriously about asking for help. It's been hard to recognize when we need help, what to ask for and how to ask for it. I just wrote about this on the "Lotsa Helping Hands" website that local friends and family are hooked into to learn about our requests for help. If you are not a member of my community on Lotsa Helping Hands and want to be, just go here and request to join the community.

Rather than be like your Aunt Mabel who has trapped you at the buffet table at the family reunion to describe all of her ailments in detail, I'd like to tell you a little bit about what I'm dealing with in the context of activities that I frequently do with you.

Taking Walks

I love walking with friends. I love walking the dog (when he is not being Mr. Dawdlepants). However for the last several weeks I get short of breath very quickly, especially going up stairs or walking up even a slight hill. I need to sit down for a little bit and recover, even if I've been walking on flat ground for as little as 10-15 minutes. Standing still for any longer than 5-10 minutes can be challenging. Just picking out birthday cards at the store today required me to lean on the shopping cart (not a big deal, but a change for me). Waiting in the security line at the airport (25 minutes) was a real endurance test.

So please understand that if we go on a walk, it will be slow and kind of short. I will huff and puff. You will not get a workout. But I do need to get out there and get fresh air and walk some, for my health and sanity. I just need to do it differently.

My doctor thought I might have blood clots in my lungs, but this was ruled out by a CT angiogram. So the latest theory is that the shortness of breath is overall related to the cancer changing and not just the last chemo I had. I don't really know what that means, but I'm just working on adapting to it.

Eating Out 

I also love going out to lunch, dinner, and coffee to restaurants and people's homes. But for the last couple of months, my appetite has been down (very common side effect) and some food just doesn't sound good to me at all. I'm not nauseated or sick, but I am often not very hungry.

So if we go out or I go to your house and I don't eat very much, please don't take it personally. I'm kind of funny about food right now.

Making Plans

I love making plans. However lately it is not uncommon for me to develop a fever out of the blue, and then I need to lie down and rest. These are usually pretty low grade and sometimes last for just 3 hours, but I feel very, very tired. If I ignore a fever and push through with my plans instead of lie down, it all just gets worse.

The last full day we were in New York I got a fever and spent most of the day in the apartment while the rest of the family ran around. That was a bummer, but I did what I needed to do. Sometimes I feel very tired even without a fever, and I need to rest rather than go do that next thing.

So if we make plans and I cancel even at the last minute - sorry, I just have to lie down sometimes. We will reschedule!

So in addition to being more open to asking for help, what I'm adjusting to is living life more slowly. I need to take it at my pace, which is slower than the pace of other people my age. I need to pick and choose more carefully what I take on in a day. I still have days when I feel pretty "normal", and that of course feels great.

The Hair Report

Oh yes, the hair. The last time I mentioned it I said that hair thinning / loss was a common side effect of the last chemo I was on. As it happened I did experience hair thinning for a few weeks in January-February, and then that stopped. Good thing I had a ton of thick hair to start with.

So now I have thinner hair and have new bangs to sort of mask the thinner hairline, but I am thrilled to still have my own hair.

This new treatment can cause hair thinning / brittleness, so we'll see what happens.

Thanks for hanging in there with me. I always like to hear about YOU and your life, because God knows I spend more than enough time thinking about my own.

I hope you're enjoying all that's blooming in your part of the country right now.

Home Stretch

Five chemo treatments down, one to go.

If my chemo regimen were a marathon, I'd be at about mile 22. I'm not a runner, but it doesn't take too much imagination to guess that at mile 22 one is tired. Very, very tired.

I think that going through chemo has a lot in common with running a marathon, except for that whole I-didn't-actually-want-to-do-this thing. Plus there's no souvenir t-shirt.

I feel relieved that there are 22 miles behind me, yet the final 4.2 miles loom in front of me and there's another really big hill to climb. So this week it's time to slow my pace, hydrate at the water station and gear up for the last push.

One big difference between my experience and running a marathon is that I'm doing this alone, not in a group of other runners. For a variety of reasons I deliberately decided against joining a support group of people going through cancer treatment. I don't regret that decision, but since I don't know anyone currently going doing what I'm doing, many parts of this journey have been lonely experiences.

On the one hand it's been very important to me to keep living my regular life as much as possible, and that's been really helpful. Doing normal things with normal people helps me feel normal, and feeling normal feels good.

Yet cancer treatment is an alternate universe that you have to be in to really understand, and it's an intense and highly emotional experience. In that way it feels similar to becoming a new mom. And when you're a new mom, it's affirming to meet other bleary-eyed, hormonally-challenged women who have suddenly become a food source and are thinking about the things you're thinking about, like what kind of pacifier to buy and how not to go completely crazy.

I think I've found a way to address my need for this new kind of community (women who are doing or have done the diagnosis/surgery/chemo/radiation/survival shebang) without committing to sitting around and talking about it a lot with strangers, and that's through exercise programs for survivors.

I've started going to a Qigong class offered by a local cancer education and resource center and I've joined a group that offers all kinds of different fitness opportunities (triathlon training, yoga, weight training, dragon boat racing, the works) to female cancer survivors, which I'll explore more after I'm done with radiation. These are free programs, which I'm very much appreciating.

In the meantime, "normal" life goes on. M. started high school and C. started middle school a couple of weeks ago, and emotions have been running high around here. B. is in a very busy time at work. I have clients to see, family and friends to keep in touch with, a dog to walk, and so on, just like you.

But I'm pacing myself, trying to rest when I need it (that's still extremely difficult for me!) and feel happy to be coming into the home stretch of this challenging race.

Reflections at the Halfway Point

When I started chemo I noticed that I no longer felt the same desire to write in this blog. I'm reflecting on that today.

If this were my journal (which I don't keep often but have kept off and on since I was 10) there would be a lot more ranting and incoherence. It would be of course way more embarrassing for me and probably not one bit more interesting to you.

If this were my memoir, there would be a lot more excruciating detail about any possible drama because my editor would no doubt insist I include them to sell books. The horrors of nausea! The acquaintance who has shunned me since learning of my cancer! The incompetent nurses, the hospital errors (I'd have to make those up), and of course, my anger at God (which I'd also have to make up), and What It All Means.

This is not to attack memoirs by cancer survivors. And I'm sure if I were motivated I could write a decent one. But still, you have to reveal A LOT and be very vulnerable in order to make the kind of connection with your readers that makes your story interesting. And as you know I haven't even revealed on Facebook that I had cancer, nor do many of my clients know, so I am miles away from baring my soul to the general public.

This blog is like a newsletter for friends and acquaintances. And with chemo there's not a lot of news - it's lather, rinse, repeat, times six. Same old story.

Humor is one technique I've used to help me blast through my natural reserve at sharing any of this very personal information. I could share a little bit of what it was like to lose a breast by talking about my trip to the fake boob store, for example.

But there hasn't been much to strike my funny bone since chemo began. And the things that are funny I've wanted to share with friends and family just in person. I've been turning inward more and wanting to keep detailed information within a smaller group of people. I think this is natural.

Going through chemo makes me feel very exposed, very set apart. Frankly I just want to blend in. But this is a unique experience that's changing me - physically, emotionally, mentally (temporarily let's hope!) and spiritually.

And so I find myself bobbing back and forth between life as usual and life as something wholly different. I feel the same, yet completely different. I look the same, yet completely different. My relationships are the same, yet are completely different.

This is what it feels like to me right now.

Hanging In There

I just wanted to let you know that I'm busy doing my "dealing with the first chemo thing" and am hanging in there.

The first few days were pretty easy, Saturday I had to lay low all day, and since then it's been up and down.

In a nutshell I've had to spend a lot of time experimenting with what kind of food intake works, and there have been a couple of minor side effects to respond to. It takes a lot of my attention and energy, and that's frustrating and kind of depressing.

Even though I knew I'd be required to pay close attention to what my body needs and respond to that (even if it means missing out on things I'd much rather be doing), in practice it takes some getting used to. It's taking me some time to just go with what is and let it be. So there have been fresh waves of general anxiety and grief these last few days, too. So much fun.

I'm doing my best to stay positive and keep up my strength - my two primary jobs. B. and the kids are taking care of all kinds of family life details.

Thanks all for your well wishes, your funny links, your surprise cookies, your dinners, your Words With Friends games, your friendship and support. Don't hesitate to be in touch, and if I don't get back to you right away, don't worry. It's just taking some time getting the hang of this.

Chemo Starts Monday, June 11

Decision Made

I finally made a decision about which of two chemo regimens I will go with.

This wasn't easy because the first oncologist favored one and the second favored the other. Both said I could pick either regimen. There's no study that shows that one is more effective than the other. It came down to a matter of opinion and which factors weighed more heavily in which oncologist's mind. It was up to me to select a regimen, and it was really hard to figure out how I was going to make that decision.

I went over and over my notes, I talked with B., with each of my parents, with a couple of other people. I slept on it for two nights. And then I made my decision. And I feel good about it.

This was a really strange and stressful situation because there was no right decision or wrong decision, yet obviously to me the stakes feel very high. I kept wanting there to be a right choice, a wrong choice, and some kind of guarantee.

Oh, and how about we throw in a free trip to Europe and a magic carpet, since I've now ventured into Fantasy Land.

Chemo Details

So I have my first chemo treatment on Monday morning. I'll have a total of six treatments, each three weeks apart. If I stay on schedule that puts my last treatment on September 24. Not that I've counted or anything.

I don't know what to expect about how I'll feel next week. I have to take steroids the day before and the day after the treatment to help combat fluid retention. Those I expect will amp me up a bit. I'll have anti-nausea medications to take. I'm pretty sure there will be some fatigue in the picture.

But rather than go through the extensive laundry list of possible side effects with you now, I'll just wait and see what happens. Have you ever checked the list of possible side effects on something innocuous, like a bottle of Advil? There's always something nasty on there, like severe stomach bleeding or seizures or shut down of major organs. Those things have never happened to me after taking the minor stuff, so I'm not going to memorize all the possible effects of the drugs that are entering my system next week. I'll just have to see how it goes and manage what comes my way.

How I'm Doing

I'm still so relieved to be in this phase of preventing recurrence rather than battling existing, known cancer, that starting the chemo process, while a huge bummer, is now something I just want to get through and be done with.

Also it still feels surreal, maybe because I don't know what to expect. I feel rather numb. I expect to feel nervous Sunday night and Monday.

Ways You Can Help

For the locals, there will be another round of dinner delivery opportunities. An email should be coming your way about this soon.

Here are other ideas for local folks:

Be in touch. Don't worry about bothering me - text or email if you don't want to call. Send a note. I love to hear from you. We can talk about me, but I really want to hear about you and your regular, everyday life.

If you're going for a walk, see if I want to come with. I'm supposed to get out every day and stay as active as possible. I'm also up for offers to have tea or just a visit.

If you or your children are friends with my kids, feel free to invite them along to something fun you're doing, or just to hang out, especially after school lets out for the summer. We'll be in town!

If you're friends with B., be in touch with him. Go out for a beer, a ride in his car, coffee - whatever. Being the spouse of a person going through chemo treatment is tough. I know he feels a lot of stress from all directions right now. He needs breaks and fun things to do and offers of specific help. He knows he can ask for help, but he (like me and pretty much everyone else we know) is not great at recognizing when he could use help or asking for it.

If you or your children like dogs, feel free to call or email with an offer to walk Caleb the Wonder Corgi anytime you want. Around the block is not too short. An off-leash park is not too long. He loves fetch in the yard, too. Come once, come ten times - whatever works. He's available!

If you're at a grocery store or drugstore nearby and you think of it, call and see if we need anything.

Drop anything by. Recently friends have brought flowers and cookies. Those are such day-brighteners!

And for anyone, local or not:

Be in touch!

Send me anything funny, amusing or distracting. Links to YouTube videos are good. A friend gave me Tina Fey's book Bossypants for my birthday last month (which you simply must read if you haven't already because it's hysterical). Any of your favorite TV shows that don't involve people dying of cancer or feature gritty violence that puts you into an existential torrent for days I definitely want to hear about. Any music you're listening to you'd recommend? I haven't downloaded any new music in a long time.

Play "Words With Friends" with me (it's a Scrabble app on your smartphone or on your computer through Facebook). This will be fun for you because I'm not one of those players who knows all the 2-letter words that no one has ever heard of, and if I get "chemo brain" I will be even easier to beat.

I probably will come up with more ideas as time goes on.

No Need to Walk on Eggshells

When someone I know gets bad news, a lot of the time I don't know what to say. Do I mention it? Do I pretend like it's not happening? Should I offer to do something helpful? Should I wait to be asked? Is there anything wise I can come up with to say? It can feel frustrating and awkward.

So in case you're wondering what would be helpful to me, here's where I'm at right now:

• It's OK if you choose not to say anything to me about this diagnosis - I won't be offended. I like living my regular life and having breaks from thinking about this situation.

• It's OK if you want to acknowledge this news. A simple "I'm sorry" or "This sucks" does the job well.

• I'm at the very beginning of this journey and am trying to take this one step at a time. Anything faster quickly becomes overwhelming. So it would be helpful if we didn't talk about things that are many steps down the road, such as the pros and cons of reconstruction, tamoxifen and other post-treatment drugs, and recipes for anti-cancer smoothies. :-)

• I love to talk about other things besides cancer, so when we do connect, let's talk about you. I really don't care how mundane it is - does your cat need to go to the vet? Are you considering an iPhone? What's up at your job? I might be able to come up with some non-medical topics myself.

• If I don't get back to you right away, it's not because I don't care. I just may have a lot going on. So apologies ahead of time if it seems like I'm ignoring you.

• I will reach out when I need help. This isn't exactly my strongest skill, but I'm working on it.

My mood, outlook, and general anxiety level change frequently. But this is where I'm at at this exact moment.

Why Blog About This?

I know that it's really hard to know what to say or do when someone you know is going through a challenging time.

It's even harder when you don't have information about what's really happening. Do you ask their spouse? Do you ask them directly?  Do you just wait until someone tells you something?

Too many times I've been outside of a friend or acquaintance's "inner circle", wishing I knew more. The more time that passed when I didn't know how bad or how improved a situation was, the more awkward I'd feel when I'd see that person.

And then later when everything was back to "normal", it just felt strange being left with the mystery of what happened.  It was never a connecting experience with that person - it was distancing.

Well, I don't want you to avoid me because you don't know what to say. I don't want to go through some awful "blackout" chapter where no one knows what went on. I need connection right now, not distance.

However I don't have the energy to talk about this out loud with a lot of people. What I've learned in the very short time I've had to stress about this is that the times I can manage to think about something else are precious.

In other words, temporary denial is essential.

I like to write. You use the Internet. You can come check out this blog anytime you want if you're curious about whether I have an update.

And then when you see me, and when this is all over, I'm hoping we'll feel as connected, if not more, than we do now.