On the Journey, II

My sleep has gotten more regular, thank you Jebus!

Really having ups and downs though--feeling a hundred different things. Sometimes I feel so needy, and I hate that, but part of me says, "Hey you have cancer, you have a right to be needy," and another part of me says, "No, I can't give in to the weakness and wimpiness..." and then yet another part of me just gets tired of my life being about cancer, but then I think I need to know something else, or I have tests scheduled...etc.

So at the moment (8:20 pm on October 24, 2008), I'm trying to strike a balance between sucking it up and pushing it down on the one hand and on the other hand, knowing my limits, knowing what I need and asking for help. Tough times. I'm the sort who doesn't like to ask for help, who thinks I shouldn't need help, that it's a sign of failure or weakness--I don't want to look needy, above all. I know--of all times, this is when I should ask for help, and it's not because I've failed or because I'm weak. It's simply how life is right now--I have cancer, I'm going to have chemotherapy and be fatigued and have mouth sores and probably lose my hair and need help with stuff (from getting groceries to cleaning the house to running Board meetings to preaching). But as Strong Heart keeps reminding me, this isn't forever, it's a sabbatical, it's a time out to kick cancer's butt the hell out of my life, and then get back to pastoring the way I want to. I know life will be different after treatment--I don't know how, exactly, but it will--but there will be life after treatment. This is temporary, and I want to find the juice in it, like any other experience. There is good in this--I've seen some of it already, and I need to remind myself of that sometimes.

I've felt frustrated recently that Strong Heart and I always seem to be doing thing around the church or my cancer. So Monday (we both have a day off) we're declaring a cancer-free zone (in spite of a mammogram I have in the morning--that's the only cancer thing that will happen or be spoken of that day). Shopping, a movie, lunch...but no cancer. Just she and I and our relationship and a day off.

Today was a clinic day. I had an EKG and then a MUGA scan--a heart test in which radioactive material was injected into my vein, then my heart was scanned to test for function, to see how well it's working. It's meant as a baseline, because some of the chemo drugs are hard on the heart. I also had a "chemo class," in which I learned a lot more about possible side effects and how to deal with them, as well as nutrition and diet while on chemo--which I found very helpful. Monday is mammogram (baseline for the clinical trial), then on Thursday the port placement. The week after. Monday I see the oncologist again and Wednesday (the 5th) is my first chemo.

Wonderful Social Worker thinks she's located a spiritual director for me. I'm supposed to speak with her (the SD) next week. We'll see--I hope so!

I'll keep you posted...

Friday Five...places I've lived!

Funny Singing Owl should use this meme...I've had to think about all the places I've lived since I was 18 for some immigration paperwork. Let's just say 18 was a long time ago and in another galaxy far far away!

I didn't count them up, but there are probably 16 places I've lived in my life...some just across town from each other, and some moves were transAtlantic.

1. Charlottesville, VA

Military Guy and I lived in a teeny-tiny duplex half that looked like it had been built out of war surplus (World War II, that is...). No insulation in the walls, and even in Virginia, you need it! That was the year I got adult-sized footie PJs for Christmas... Charlottesville was just beginning its comeback then--the regentrification of the downtown, the rebuilding of stores and homes and movie theatres. We really only lived there for about 10 months, but it was a favourite place to revisit on weekends, once we moved to the big city, AKA...

2. Washington DC

I love, love, love DC. Yes, the crime rate is higher than it ought to be in the capitol city of the US, and yes, it's expensive, and absolutely it's a pain to drive it...but I love the sense of things happening, and the museums, and all the universities with all their plays and art shows and movie groups, and the vibrancy of Dupont Circle, and the parks, and.... We lived several places in the area--Northern Virginia twice, but mostly suburban Maryland (I prefer the latter). It's also where I went to seminary, as well as my OTHER graduate degree (in library science). My son was born here too, and many of my friends still live in the area. Of course, it's also where I was told I wasn't welcome in my denomination of origin, and many of my former friends (those who haven't spoken to me since I came out) also live here. So I love DC, but I'm not sure I'd want to live here again. But never say never! From DC, the military moved us to...

3. Munich, Germany

We lived in Munich twice. It is a lovely city, as close to a village as a big city can get--in terms of atmosphere and attitude. At least, that was how I felt the first time I lived there. It was still a wonderful place. Military Guy and I lived there for three years, back to DC, then back to Munich for two years, and we visited again several years later. I don't know. Maybe my memory had misted things, but Munich in the 80's seemed a quieter, gentler place. The architecture and food and friends and cultural events were still there; but something had changed. Maybe we had built it up too much in our minds; maybe the less-favourable exchange rate had something to do with it; maybe it was because we were older, or because we were parents with a toddler in tow. But somehow it wasn't as magical. Still a wonderful, wonderful place--highly recommended!

4. Baltimore, MD

Charm City! Man do I miss the seafood! Chesapeake Bay blue crabs are the real thing. Here in River City they try to give me crab legs from the Pacific...NOT the same! Those sweet meaty crabs, cracked on a picnic table in the back yard, washed down with a pale ale...Mmmm. Balto is a bit rough-and-tumble, but a neat place nonetheless. I'd live there again. Note: the original Washington Monument is in Baltimore. Oh, and they have the best baseball stadium in the US, right across the street from the best seafood restaurant in the world.

5. River City

But of course, there's no place like home! River City has so much to offer. I love it here. We get some abuse from the rest of Ontario (we are sometimes called the "armpit of Ontario," due to our image and geographical location), and we do seem to have a higher cancer rate, but overall, I wouldn't trade it. I like that I can be pretty sure of running into friends when I take a walk downtown; and that half the people I know are connected through family, or work, or school, or a sports team, or community work, or... The other day I met a friend for tea, and as we were getting ready to leave the cafe, two friends of ours showed up purely by chance--so we sat back down and talked for another hour! I just love that! And there's a ton of good music here, and the river, and Sister City is a nice view, and so many ethnic restaurants (what you want? Thai, Japanese, Italian, Portuguese, Greek, Indian, Vietnamese, Chinese--several varieties, Caribbean, Middle Eastern, BBQ.... I'm sure we have one, whatever it might be). Yeah, I'm a booster. Oh and did I mention the health care system? Of course, you'd get that anywhere in Canada, but still.

Five great places to live!

On the Journey....

I haven't really slept well on a regular basis for a while now--probably since I learned I had cancer and would need the lumpectomy. Not that I've been dwelling on things or that I've been thinking things over and unable to sleep. More that I don't stay asleep. I'll wake up a couple times a night and just stare at the ceiling, sleepy, but unable to sleep.

And then when I do sleep, it's not a restful sleep. I've been having very vivid dreams, mostly of the anxiety sort, but not all--some very good ones--but so vivid that they aren't restful. I would love to fall asleep and not wake up until morning. I'm very tired a lot of the time...or else I'm OK for a few hours and then crash after four or five hours. If I'm like this now (residual surgical effects? psychological weariness?) what in the world will I be like after a round of chemo?

Still some soreness and tenderness in my arm and along my ribs and shoulder....and some numbness still as well--but I understand that can take months to resolve.

Otherwise in a pretty good place--Strong Heart and I had some quality time this weekend (i.e., it didn't involve either of the churches we serve, medical issues, or running errands), which was wonderful. I'm making plans and preparing for when I may be too tired to lift my head, much less plan worship or write a sermon or lead a Bible study; and there's tons of paperwork and phone calls and organising to be done. It's giving me something to do!

One thing I am thinking about, and that is locating a spiritual director. This really isn't something we're taught about in seminary, and there aren't any resources out there that I can find--leading a church while you have a serious illness... More than the practical stuff--or in addition to it--I want to be able to address the spiritual dimension of this, for myself, for myself and Strong Heart, for myself and the rest of my family, and for myself and the congregation. So there's another phone call for tomorrow! I'm hoping the social worker (a former clergy person) will have some resources and possibly even know of some SD's in town here.

I'll keep you posted!

It is What It is...

...And what it is, is an aggressive form of breast cancer--a "triple negative," in fact. There are three forms of hormones, as I understand it, to which it might be receptive or sensitive. Any one of them could be used for treatment (Clarification: the hormones "feed" the cancer/tumour--assuming there are any cancer cells left or, possibly, unidentified tumours elsewhere--so by eliminating those hormones from the patient's body, the tumour/cancer is "starved" and dies). Unfortunately, mine isn't sensitive to any of the three (and so eliminating them or stopping my body's production of them, will not affect the cancer). Therefore, it will be treated aggressively.

I'll be getting a total of six cycles of chemo, each of three weeks. During week 1, I'll get the chemo. Then I have week 2 and 3 off, then the next cycle starts with week 1 and chemo again. That repeats for six cycles. I'll be getting two kinds of chemo, one is a "cocktail" that goes by FEC for short--I get that the first three cycles--and then docetaxol for the second three cycles. Once that's all done, there will be radiation therapy.

This is going to be complicated. When people talked about needing energy and time to cope with chemotherapy, I thought simply of the physical side of things. But, wow! I have to have blood tests drawn at the clinic the week before chemo, then see the doctor a couple days before chemo. Then a week-10 days after chemo, I have to have blood tests again. And then it's about time for the pre-doctor's visit blood draw again. Periodically I will also have to have heart tests. Before I can even begin, I have to be sure my vaccines are up to date, be tested for Hepatitis and HIV, and have a stent placed. Luckily, my surgeon already had me get a bone scan and some baseline ultrasounds.

It will probably get more complicated, as I hope to be accepted into a clinical trial for a drug under development for the "triple negative" tumours. That will require more tests; but at least they can give it at the same time as the other chemo.

So now I'm doing what I can to get ready--from the medical stuff to planning worship for the next few months to making sure my car is in running order to replacing my wonky stove (I know its quirks, but I'll probably have friends and family cooking on it and they don't know the tricks...).

I do plan on a "shaving party," as most of those chemo drugs have hair loss listed as a "usual" side effect; the other one says "frequently." I'd say the odds are pretty good I'll lose some! So my plan to crop it very close (and Stylist and I have been working so hard on growing it out! Oh well...) and then I won't notice it so much.

Strong Heart and I are very pleased with my medical oncologist. It took him a few minutes to adjust to the fact that SH was my partner, not simply a good friend (it's a cultural thing), but once he did, he carried on just fine. He's patient, clear, willing to explain, to discuss (instead of decree), and genuininely caring. For that matter, all the staff (and I mean everyone--social workers, pharmacy techs, nurses, volunteers, lab techs, etc.) in the cancer centre seem to be the same way--caring, focused on what will make life easiest for the patients and their families, supportive of what the patient needs, etc. A very positive experience--as positive as possible, anyway, given the circumstances.

And I'm going to need some positive experiences! The church is still struggling, looking for solutions to the financial crisis. One consolation--we are not alone in our struggles. Most non-profits here in River City are facing similar issues. It's not just our short-comings--it's the economy!

My plan at this point to post about my progress in treatment--detailed but not graphic, partly as an update on how I'm doing, but also partly as a document of what this journey was like for me. Everyone has a different story (see last post) but this will be one woman's story, in any case. I'm committing to be as honest and as open as I feel comfortable--maybe pushing that comfort envelope a bit--so that this is a true account, not simplified or glossed over so that it doesn't worry anyone. It is what it is; and I'm getting wonderful treatment, and an amazing amount of support from all sides.

I'll keep you posted!

Update...to be continued...

Strong Heart and I visited the surgeon again yesterday.

The cancer is at Stage 2, which means that it was found in my lymph nodes, besides the tumour.

The usual treatment is radiation and chemo combined. We'll know more about scheduling and timing after we meet with the care team tomorrow (Wednesday the 8th).

It's not what I wanted to hear, but after wallowing in negativity for a couple of weeks, I got angry this weekend, and that got me out of it and now I'm in a positive place.

What got me out of that boo-hiss place? Well-meaning people who want to 1) treat me like glass and coddle me; or 2)tell me they know exactly how I feel because their sister/cousin/co-worker had breast cancer; or 3)tell me how I should be eating/sleeping/treating it, because of what worked for their sister's best friend's cousin's daughter-in-law.

I know they mean well, and so I do my best to respond graciously. SH gave me a great phrase to use--"Everyone's story is different"--and I embellish on it.

Sample: "Well, everyone has a different story. We really like my surgeon and we're going to see what she recommends. I'll remember what you said; but we really trust my surgeon."

So why does it make me angry?

• Because I'm still healthy--don't treat me as if I'm suddenly unable to do anything. I want to do as much as I can for as long as I can. I appreciate the support and love that people are trying to express, but I don't want to let go of what I CAN do until I have to.
• Because they DON'T know how I feel! The people who have survived cancer have simply told me that; "I'm a survivor," and nothing more. They understand.
• Because I need to trust my surgeon, myself, Strong Heart and my care team. The advice-proffering folks have no idea what my health status is like, my life circumstances, my options. I personally plan to fight this tooth and nail. I have a 19-year-old son I want to see graduate from university, get married, etc.; a partner I love and plan to spend the rest of my (long) life with; work to which I am called and love passionately; family I want to be with; friends; experiences I haven't had that I want to have--I am going to do what it takes to be there for all of that. That's my decision, and mine alone, and I want to be free to make it without any suggestion that what I'm doing may be OK in the short term but ruinous in the long term, or vice versa--or harder on SH than it needs to be, or bad for my health in other ways, etc.

I know they are all well-intentioned. So I smile politely and repeat, "We're very happy with the surgeon. Everyone's story is different. I'm fine for now--if and when I need help I will be sure to call on you."

(Note: I do intend to ask for and accept help when I need it, which won't be easy for me to do; but I don't just yet!)

Tuesday Morning Giggle

Why does this make me smile every time I see it? Am I just sick?

Sunday Morning Reading

In my Sunday morning procrastination reading, I came across this article by Nathanial Frank, on the religious-not-so-right's stance on "Don't Ask, Don't Tell" (the US military's policy on gays, lesbians, bisexuals and transgender servic members, for my two or three global readers).

Frank has a book coming out which I can't wait to read--"Unfriendly Fire"--about GLBT servicemembers. He has several excellent points to make.

We are wasting human lives and resources and actually undermining our troop morale (try living without being able to be honest about who you love, having to monitor your conversation, having your deepest relationship ignored--or not even being permitted to mention it--and living in fear of being "found out").

My ex-husband was in the US military--yes, I was an Army wife (although I don't recall those 17 years being nearly as dramatic as the TV show...), and I have some understanding about what is needed for troop cohesion, morale, etc. It's about trust. And trust goes both ways--trust that each individual is the unit can be accepted (perhaps with some teasing, that's par for the course) as long as s/he does his/her part. That's called professionalism, and how dare those who would enforce DADT inply that our troops, on a mass scale, are less than professional and well-trained?

Thing is, most of the military leaders of 15-20 years ago were of a generation when it wasn't acceptable to be out; and so their prejudices ruled, as Frank points out. Today, with leaders and troops of a different generation, same-gender-loving mostly gets a shrug--as it should. Of course there are prejudices among the troops--but there were to African-American servicemembers, to Latino servicemembers, and to Asian servicemembers as well--not to mention women. Part of the military experience is learning to simply get the job done without allowing personal issues to get in the way--personal prejudices. That's called professionalism.

I love the Huffington Post...

Back to Normal?

Yeah, well, first define normal!

I led worship last Sunday, and will do so again this week. I started back to my semi-secular job (it's at another church of my denomination) this week, just two days, to ease myself back into it.

It's been hard, though, to get through a certain lethargy...I know there's a sermon to be written for tomorrow, and I want to write it, and I have ideas and plans for how I want it to go, but I can't seem to muster up the oomph to actually do it. I don't know if I'm still recovering from the surgery or if it's psychological or sheer inability to shift gears from enforced laziness.

I slept 12 hours last night--I haven't slept that long in years.

Well, Monday Strong Heart and I go in for the pathology results. Wednesday is the "intake" appointment at the cancer centre here in River City--that's when we'll get some idea of a schedule for treatments.

I continue to be amazed and touched by the support and caring of my friends, both here in River City, across the continent and around the world. Simply knowing people are holding me in prayer is powerful and humbling. Thank you for those prayers...and keep 'em coming!

And keep SH in your prayers too--she does so much for me and yet feels she isn't doing enough. Her love and strength have held me up many times these last few weeks--her presence in my life has been a blessing. If she had not been present, of course I still would be fine. But because she is here with me in this, everything is that much easier to bear.