The Accidental Amazon

I thought I’d follow the example of my friend Sarah, who has so often shared the healing power of the flora and peace of her garden allotment in Liverpool on her blog. My own garden has been rather woefully neglected these past few years because of post-treatment fatigue and chronic shoulder problems from radiation. But I have hopes this year to give it some more of the TLC it deserves.

In the meantime, I live in the smallest state in the U.S., but a lovely one, full of treasures one might never expect to find. I visited one of them this past week, to celebrate my birthday with another friend, Holly, whose birthday is the day before mine. She and I have something of a tradition of trying to get out and enjoy a — hopefully! — sunny and beautiful spring day during our birthday week. And this year, with a confluence of tremendous luck, we pulled off a perfect afternoon at Blithewold, a late Victorian mansion museum with 35 acres of gardens overlooking Narragansett Bay.

First of all, the weather forecast for the day we had picked for our outing was not promising. Rain was in the forecast in the days leading up to it, including the morning of the day itself. But Mother Nature was on our side, and despite the little icon on my Weatherbug widget, the sun broke out and the temperature was delightful. Next, we really wanted to have high tea at Blithewold, which is served in the formal diningroom, but all the reserved seats were booked, with the proviso that a few seats would be available for walk-ins. So, we thought we’d take our chances, get there early and see what happened. And we were able to get the last table available for tea!

And it was a lovely, proper tea, with sweet old, mismatched china, hot strong tea in a china pot with a pretty cozy, strawberries and cream, cucumber sandwiches, tiny profiteroles, and lots of other goodies. Thus, suitably fueled, we took a long stroll in the gardens. And what gardens they are! The thing about going to Blithewold this week in particular is that all the daffodils — and many other flowers — are in bloom. And there are acres of daffodils, jonquils, narcissus, every sort of daff cousin in all sorts of shades and sizes, winking in the dappled shade of stately old trees, many of which were flowering themselves. So, without further ado, here is a sampling of what we strolled through, in the gentle April sunshine.

First, the mansion itself, from the back yard, as it faces the Bay.

Now, for everything else. First, the daffodils. They just go on and on…

A lovely Japanese garden, with flowering cherry trees and a lily pond.

I love this bench. This seat is planted with several varieties of thyme!

“Peony’ tulips. Amazing!

There are so many woodland flowers, peeking through the shade. These are hellabores.

The view of the Bay from the back of the mansion. Someone is out sailing already. And who can blame them!!

There are many more pix I could share, but this post might go on for miles if I did! The best part is that, every month, every season, there are different flowers to see and new gems to discover. If you come for a visit, we’ll go for a stroll there, okay?

Having Birthdays

Today is the fourth birthday I’ve had since being diagnosed with cancer. So far, I’m still dancing with NED (which means my cancer tests since treatment still keep saying “No Evidence of Disease”). Around my first birthday after cancer, I went out and got a tattoo. On my leg. Not pink. Not a ribbon. Yeah, it’s the one on my leg in the blog logo pic. It wasn’t my first tattoo. It followed these little black dot tattoos that I got — involuntarily — when I had radiation. I went for my leg tattoo with another breast cancer sistah. The tattoo artist turned out to have lost his sister to breast cancer a few years before. Instant support group. Stuff like that happens in Cancer Land.

If I had any advantage going into Cancer Land, it was perhaps that I’d already been through menopause, so I wasn’t suddenly thrust into it by cancer treatment for my hormone-positive cancer. So, I had already ‘adjusted’ to hot flashes and night sweats and having a thermostat that was permanently stuck on high. I shelved all my turtlenecks and saved a lot on heating oil. Didn’t mean I had no hormones left, however. I came to value my remaining meager supply when I was put on tamoxifen, which proceeded to annihilate what remained of them. After a year of suffering through headaches, joint pain, hair like straw, brain fog and endless fatigue, I decided that I wanted to hang onto my remaining dribble of hormones. The 7.5% decrease in my recurrence risk that was supposed to be conferred on me by tamoxifen just wasn’t worth the suffering in the meantime. When you’re over 50, you’ve already bumped into a few challenges to your quality of life, even without cancer. So you get pretty snarky about hanging onto what you’ve got left.

Age and language and stereotypes are funny things. Dr. Susan Love once publicly referred to certain kinds of breast cancer as ‘granny cancer.’ I’m not entirely sure what she meant by that. Since the U.S. Preventative Task Force recommended that routine mammography for breast cancer screening should start at age 50, there may be too many folks who think of breast cancer as ‘granny cancer.’ Tell that to my friend Rachel’s husband, who just lost his wife at age 41 to metastatic breast cancer. Personally, I don’t like anyone referring to any kind of cancer with glib, age-ist phrases. The birthdays stopped for Rachel, and they continue to stop for 40,000 American women and men every year because of breast cancer.

So, I’m just happy to have another birthday. It’s a bit sobering now to be within two years of my sixtieth birthday, but we baby boomers, especially we of the younger contingent born after 1950, seem to be benefitting from a whole rethink on age expectations. I’ve been old enough to be someone’s granny for over a decade. Or two. But I and my life bear little resemblance to my own grandmother’s life. Thanks to increased longevity, better nutrition, more exercise, sunscreen, and really good hair coloring, we women of a certain age have a much different life than our predecessors.

So I’ve been a little (a lot) ticked off that cancer has seen fit to interrupt and rearrange my own expectations in this decade. In fact, the word ‘expectation’ has changed irrevocably for me in the past few years. I expected to slow down a bit as I got older. I didn’t expect to get my sorry butt handed to me on a platter by post-treatment fatigue. I expected to plan how many more years I had to work until I could afford to retire. I didn’t expect to become leary of making plans at all. Heck, I expected to be symmetrical, more or less. Now I’m not. Whatever. Old news. I’m getting over it. One day at a time.

I do expect to be here today and tomorrow. I could be wrong about tomorrow. You never know. I do expect that I will continue to love dark chocolate, and daffodils, and temperate weather, and my friends, and laughter, and cats and dogs, and writing, and making pictures. I’m not sure I ever expected my snarkitude quotient to multiply as much as it has in the past three-and-a-half years. But since it has, I expect it to continue. And I’m planning to enjoy all of this and more today. And every other day I keep dancing with NED.

So, how’s the whole birthday thing for you now?

Tainted Blood?

Since having cancer, I think about emergencies and end-of-life issues probably more than other folks. I’m still in the process of getting organized per my previous post, Exit Strategy, trying to plan for potential future health crises, updating my will and my retirement savings plan, giving my friends extra keys to the house, etcetera and so forth. I’m not yet due to renew my driver’s license, but I checked, just in case. And like many other people, I specified myself as an organ donor on my license a long time ago.

About a decade or so ago, I met a woman whose ten-year-old daughter developed cancer and liver failure from chemo. Her cancer was in remission, but she desperately needed, among other things, a liver transplant. A donor liver became available, it was a match, the tissue was carefully tested, and the transplant took place. It went well. Her little girl survived, tolerated the anti-rejection meds, began to regain some of her health, and then, unexpectedly, died. Apparently, the liver she had received contained cancer cells. Because her immunity was suppressed by the anti-rejection drugs, her T cells and other cells could not identify and fight these occult cancer cells, so the cells rapidly turned into full-blown cancer, and robbed her young life. They were able to determine that the liver cancer was not mets that might have developed from the cancer she’d been treated for. It more than likely came from the donor. It was devastating.

So, I looked at my license, and remembered this little girl. And wondered, would anyone want my organs anymore? I would never, ever want to donate an organ that transmitted a deadly legacy. Do I just forget about donating anything now that I’ve had cancer? I assumed so, but I decided to do a little research.

Turns out it’s not as cut-and-dried as I thought.

Blood Donation

The American Red Cross lists eligibility requirements and other details for blood donation on their site. Some of them surprised me. Did you know that, if you are a woman, in order to donate red blood cells, you have to be at least 5’5″ tall and weigh at least 150 pounds? For other blood components, you have to be at least 17 and weigh at least 110 pounds. Just adding a little edit here, on 4/4, to clarify this a little. If you are female, you don’t have to be 5’5″ or weigh any more than 110 pounds to donate blood; they can use everything — white blood cells, platelets, etc. — but the red blood cells if you are shorter than that or weigh less than 150 pounds. These are also the requirements for the American Red Cross. Many other organizations do blood drives and may have different requirements.

The American Cancer Society lists the precautions that apply to cancer patients. From the site:

While cancer has very rarely been transmitted through transplants of solid organs such as kidneys, there have been no reports of cancer transmission by blood transfusion. To check this, a group of researchers looked back in time at people who had received blood from donors who had developed cancer within 5 years of giving the blood. They found no increased cancer risk in those who got blood from those who were found to have cancer soon after donating.

The ACS states some obvious precautions, that you cannot donate blood if you are being actively treated for cancer, or if your cancer has spread or recurred, or if you’ve had leukemia, lymphoma or Kaposi’s sarcoma as an adult. Otherwise, if you stay cancer-free (meaning, for most of us NED or No Evidence of Disease) for 1 to 5 years after treatment, you can donate blood. If your cancer treatment involved only surgery to remove a non-invasive tumor, then you need only wait until you’ve recovered fully from your surgery. Visit the links for more information.

Organ Donation

The U.S. Department of Health and Human Services maintains a website about organ donation. It states that, “There are few absolute exclusions [for organ donation] (such as HIV infection, active cancer, systemic infection) and no strict upper or lower age limits.” According to the American Cancer Society site, the tragic story of that little girl is rare, but not unheard of, for the reasons described.

But even if you’ve had cancer, some of your tissue and organs may still be safely donated. Kidneys are often donated from living donors. For other donations, if you have active cancer at the time of your death, your internal organs will not be used, but tissue like skin, bone and the corneas from your eyes may still be safe. The ACS site has links to the United Network for Organ Sharing, which provides details about the process of donating and signing up if you need a donation.

Bone Marrow Donation

The eligibility requirements for bone marrow donation are, understandably, more restricted. The City of Hope website explains them thoroughly. In general, with few exceptions, you cannot donate bone marrow if you have a history of cancer. However, you can donate bone marrow if you’ve had only basal cell skin cancer or in situ cancers, like DCIS, for example, or one of those lovely in-situ cancerous colon polyps, like the one I had removed early this year [see Dodging Those Cancer Bullets]. Further information about bone marrow donation and transplant may be found at Cancer.Net. Hmm. Since I am evidently so far only a two-time member of the Non-Invasive Cancer Club, I could donate even bone marrow without feeling like I might do more harm than good.

Paying It Forward

I know a healthcare clinician, a wonderful, endearing and competent woman I’ve known now for about twenty years, whose husband needed a kidney transplant. After screening his family members and checking the donor registry with no success, she decided — despite the odds — to have her tissue evaluated as a possible match. And lo and behold, she was a good match! So, a few summers ago, she donated one of her kidneys to her husband. And today, they are both well and healthy. Pretty incredible. Brings tears to my eyes just thinking about how they must both have felt at their success. You never know, do you?

For those of us who’ve had cancer, if we regain some measure of health, we often want more than ever to help someone else stay alive. Many of us are haunted by feeling like we are forever tainted by cancer. Before I researched this post, I couldn’t imagine that any of us could still donate our blood, organs or tissue. It’s good to know that, with suitable caution, we still can.

Have you ever donated or received a donation of blood, organs or bone marrow? Do you know someone who has? How do you feel about it now?

For a long time, complaining about the long and late-term side effects of radiation was a frequent theme on this blog. I haven’t bitched about being barbecued for a while now. That’s not because everything is just ducky, however. It’s only because (a) I got sick of talking about it, and (b) the problems it has left me with are a daily, constant presence. Oy, already…

A little background. First of all, this image here is only partly accurate. Yes, that is a radiation therapy gizmo, also known as a linear accelerator. For all you particle physics geeks out there, yes, linear accelerators are also known as ‘atom smashers.’ This is not a comforting thought when you are lying on the (of course, completely uncomfortable) table, with this massive thing that looks like a huge camera lens focussed on you, shining its little green crosshairs on your breast. That’s the other thing wrong with this image. You are not modestly covered up with a hospital gown. You are naked from the waist up. And the crosshairs are shining on your skin. And it’s cold in there. And you’re usually barely recovered from having some portion of your breast whacked off, so you have a hard time getting your arm over your head. And you have little tattoo dots on you, so they can aim the crosshairs at them before they zap you with death rays. But other than that…

Oh, and I actually found a web page describing how to make your own little magnetic linear accelerator at home. But I am NOT including a link. As if…

So, about four weeks after half my right breast was surgically removed, I had external beam radiation, for three weeks, per the Vancouver Protocol. This protocol is for patients with early breast cancers that can opt for lumpectomy (which was a slab-ectomy in my case). Standard, old-style radiation protocols call for six to seven weeks of radiation. The Vancouver Protocol uses slightly higher individual doses (called fractions) and cuts the number of visits in half. It also seems to lead to fewer nasty burns while you are having it, because by the time you start turning red, blistering, peeling, glowing in the dark, feeling like you want to bite someone, you’re almost all done. This was true in my case, as far as skin issues were concerned. Of course, no matter what kind of radiation you have, some of the side effects don’t start to show up until radiation is finished.

Radiation destroys cell DNA. The basic premise is that cancer cells don’t have the same ability to repair themselves that normal cells do. So, they are hoping that they zap you enough to damage the cancer cells and cause them to die, before they damage too many normal cells. But of course, radiation does damage normal cells, and even if these cells repair themselves, the repairs don’t return them to their pre-barbecued state. This is particularly true for the muscle, tendon, skin, lung, lymphatic and other soft tissue cells that happen to get in the way of the death rays. The repairs our bodies undertake are imperfect; instead of nice, brandy new muscle cells, for instance, the body may end up replacing the damaged tissue with more fibrous tissue that doesn’t act like undamaged muscle tissue. Fibrous tissue isn’t as stretchy. Fibrous tissue sticks to itself, a lovely phenomenon called adhesions. In other words, scar tissue. The scar tissue you see along a healed surgical incision is this kind of stuff. You can’t see the scar tissue that you end up with inside after radiation, but you can sure feel it.

I don’t know about your radiation oncologist, but mine was, shall we say, less than informative. And that’s putting it very, very politely. Let’s just say that informed consent was an unknown concept with this dude. Denial he was well acquainted with. Following is a list of problems I developed during, after, and waaaaay after having radiation. I was pretty much told that radiation had nothing to do with nearly any of these problems. But I know better. Research backs me up. So, because my rad onc was essentially a lying sack of unsmashed atoms, the only help I ever got from him for any of these problems was a jar of Silvadene. And actually the nurse gave me that.

Radiation Problems:

1. Massive, body-slamming fatigue, which started after the 7th treatment. I haven’t been the same since.
2. Folliculitis; this appeared as a bunch of teeny red blisters that weeped, and all my little skin hairs fell out. Bizarre.
3. Burn, baby, burn. No explanation necessary.
4. Decreased red and white blood cell count, suppression of immune function . This wasn’t even checked by the rad onc. Had to get my primary care doc to order the lab tests. Duh.
5. Massive, extremely nasty respiratory infection by day ten of treatment. Not uncommon. The radiation field is over one side of your upper respiratory system, for one thing, and for another, your immune system is whacked. In the midst of a hospital complex that housed roughly 1600 doctors, no one at this ‘comprehensive cancer treatment center’ was capable of confirming the diagnosis or writing me a prescription for Zithromax. Instead, I had to crawl home, call my primary care doc on a Friday afternoon, beg them to squeeze me in, and get treated. Honestly, I would have even spelled Z-i-t-h-r-o-m-a-x for the rad onc, if that’s what his problem was.
6. Bright red skin, big, blown-up armpit. This occurred about 3 days after I finished radiation. I remember that the armpit theme became a hot (literally) topic with my online radiation group. Sheer, unadulterated misery. At its worst, I couldn’t bear any pressure whatsoever over my barbecued self. All I could do was lie in bed, naked from the waist up, and whimper a lot.
7. Fatigue, fatigue, fatigue. We’re in the post-radiation wasteland from here on out.
8. Swelling, swelling, swelling.
9. More upper respiratory infections.
10. Continuing low red and white blood count, whacked out immune system. Now we’re about nine months post-radiation. Was also on tamoxifen by then, which just added to the fun.
11. Signed up for a research study on post-treatment fatigue for folks with breast and prostate cancer at U-Conn Cancer Center. GOD BLESS YOU, YOU GUYS!!
12. Developed chronic cough and shortness of breath. This was about a year after radiaton. After lots of back and forthing and ass-covering ambiguity and chest X-rays and CT scans, was diagnosed with asthma/acute bronchial inflammation, and told I had scar tissue on the pleural covering of my lung in the radiation field. Pulmonary function tests were, thank heaven, normal. Got drugs. Felt better. Felt pissed off at rad onc all over again.
13. Meanwhile, had slight lymphedema early on, which turned into chronic axillary cording. Oh, goodie. Had bowstrings from my elbow through my armpit and down the right side of my trunk. My chest muscles felt like singed shrink wrap. I couldn’t raise my arm over my head. I had PT for three months. This all started immediately after radiation and continues to this day.
14. Chronic adhesive capsulitis in shoulder, chronic spasms in trunk and chest muscles. My daily nemesis. Wake up every day feeling like my right side has been squashed by an elephant. As long as I stretch, play with my Theraband and take pain meds now and then, I can function. I also had to change my computer mouse for trackball thingy.
15. Weird, occasionally sharp breast pain. Sometimes I get these incredible charly-horse spasms down the front of my trunk, from collarbone to waist, on my right side, when I bend over too quickly to pick something up. Still happens. Intensely nasty.
16. Still have fatigue now and then. More now than then. Still taking neurostimulants. Also still have trouble sleeping well. There’s nothing quite like insomnia when you’re exhausted. Really special.

So, there you have it. Well, there I have it. I hope you don’t, but do tell me if you do. All I can say is that you’re not alone. It’s been three-and-a-half years since I finished radiation. Radiation has not, sadly, finished with me. I’ll include a few helpful links below.

Some links:
Arm & Shoulder Pain After Breast Cancer
Shoulder girdle exercises
Coming Up for Air — some details about soft tissue pain, lymphedema, cording, and respiratory side effects from radiation.
Info about cording and axillary web syndrome. Also a great resource for lymphedema.
LymphNotes.com. Another good resource about lymphedema.
The F Word. The nasty, but necessary, truth about post-cancer fatigue.
Adapting: Practical Stuff for Hands & Arms. Trackballs, ergonomic computer keyboards, and other stuff for those of us with impairments.
Losing It — And Trying to Get It Back. Fatigue and cognitive dysfunction revisited. Except I was even more pissed off by then.
Clinical Implications of Pulmonary Changes After Breast Cancer Radiation. Oy.