Here we go again

When I completed treatment in early August I assumed I was through with this neglected blog for a loooong time. While my wonderful oncologist made clear to me that the 5-year numbers weren't good, he was also effusive in his praise of my wonderful attitude and emphasized how important it is to keep a positive attitude.

Hey, Positive Attitude: I am thee and thee are me. Just as soon as the cancer researchers isolate the Marcee Factor, they'll be compounding it and making big pharma bucks out of it. In the meantime I'm here to testify that all the good thoughts in the universe can't necessarily control the frenzied multiplication of cancer cells.

I'm writing today to tell you that a positive attitude does not necessarily result in a positive outcome. I'm here to tell all of  you who have been told that your cancer has returned haven't, by definition, failed.

Yes, my cancer has returned. When I tell people they often ask, "In the same place?" Well, no. The lobe of my lung that had cancer was removed, so, there's no longer that lobe in which the cancer can return. There are, however, 4 lobes left, and one of them showed up in the CT scan as having another tumor.

Here's where we are right now: In advance of my first official follow-up visit with Dr K, I had a CT scan. When I had my appointment with him on Nov 25 I fully expected that the information imparted would be about what the long-term follow-up would be. Six months? Four months? Annually? I was totally NOT expecting that the information would be that the CT scan showed a tiny tumor in the upper right lobe.

At this moment I'm in yet another Waiting Mode. Dr. K wanted to wait a few weeks before more tests. Honestly, I was so shocked at the test results I didn't ask any questions. As with the initial diagnosis in January, I just blinked and said, "Okay."

I'm scheduled for a PET scan and blood work on Dec 30, and an appointment to review the results with Dr. K on Jan 6.

It takes neither a cancer specialist nor a rocket scientist to know that this isn't good news. I've poked around on the internet and have found a dearth of information in response to the search term, "rapid recurrence of cancer after treatment" or any of its variations.

But wait, there's more

On the same day as my appointment with Dr. K, I returned home to a voicemail from my sister Joyce. She'd been experiencing weight loss and increased fatigue and I'd been among several people who'd been urging her to get in her doctor's face and demand answers. The sound of her voice on the VM told me it wasn't good news.

You can't make this s**t up. Yes, her doctor had ordered tests, including a chest X-ray. On the very same day I learned that my lung cancer had returned, she learned that she had lung cancer. The news since then has been downhill. The PET scan showed "activity" in her lung, a lymph node in her esophagus, a lymph near her collarbone, in the peural cavity, and in her stomach.

Smart lady and smart husband, they departed today for a 3-week cruise into warm climates. When they return in January she'll have whatever tests are deemed necessary to determine the extent of the cancer and shape the treatment. I remind myself, and my sister, that I had a PET scan early on that also showed hot spots that turned out not to be cancerous; I can only hope she's as fortunate.

More later

I'll post again when there's more news. I've re-read my entries from my first go 'round with this disease and have been stunned at the lack of detail. My experience was so much more interesting, difficult, and nuanced than what was posted. Ever seeking the bright side, I'll try to catalog a more comprehensive account this time.

Treatment Aftermath

I'm just not the kind of person who should try to have a blog. There's always something different I want to be doing instead of updating my blog.

While a lot of time has passed since the last posting, I can sum it up pretty succinctly: I made it through 28 radiation sessions and 4 more chemo sessions with relatively few and minor side effects.

There. That's been my life from July 2 through August 9.

Brena arrived on July 15 with the single purpose of feeding me. I didn't have much appetite and even less energy to cook for myself, so her mission was to tempt me with wonderful tasty, healthy foods. And then clean up the kitchen after. Oh, and tend the garden and general housekeeping. Plus grocery shopping. She's flying back home this afternoon, and it's going to be strange and weird and lonely when she leaves. We've had a wonderful time together, and it's been a great gift to me. I know I wouldn't have made it through these times so well without her. 

Radiation was at 1:00 every day Monday - Friday. In the beginning they gave me 3 almost invisible tattoo dots on my breastbone and one in each armpit. I had to remove my clothing from my top half and put on a hospital gown, then lie on the table on my back with my hands holding on to 2 conveniently-placed handles above my head. The LINAC machine came complete with a perfectly straight laser light and the nurses would move me around as necessary to make the light line up with the 3 tattoos. Once I was in position they left the room and the radiation procedure began. I couldn't feel a thing, and soon became so comfortable with the process that sometimes I'd doze off for the 15 minutes. I always pictured the Goddess of the Universe sort of waving her hands over me, filling me with healing waves of energy. [Okay, I know there might be some of you out there who think that's strange, but I'll get through this my own way.]

As will come as no surprise to most of you, I immediately set about making my own hospital gown, modified to provide better "coverage" yet still allow the nurses to line up the dots. I made it out of some fabulously bright and happy fabric that Sherri donated to the cause. The nurses and even the doc said I could make a fortune by making and selling such gowns. Yeah, I've heard that a million times and no one seems to understand that I would never want to turn my hobby into a business, plus I'm much too old to spend all day every day hunched over a sewing machine. I am thinking about selling the pattern, however.

Back to radiation treatment. There was a very long list of side effects in the literature they gave me before treatment started, so I was prepared for things to be bad. Plus I'd been warned that adding in 4 more chemo treatments while doing radiation would be very hard on my body.

Well, I sailed through the whole thing with only the most minor side effects, other than fatigue. Oh. My. God. I've never slept so much over such an extended period. I'd usually sleep about 10 hours a night plus a 2-hour nap in the afternoons, and maybe slip in a morning nap on the weekends. But while I was awake I felt pretty well. A few times I ran into people I hadn't seen in a while who didn't know about my diagnosis and treatment, and they'd always say how great I looked. (Lose 20 pounds and everyone thinks you look good!) They were always shocked when they learned what was going on. In other words, I'd feel just fine until I hit the wall, and then I had about 4 minutes to make it to bed or I'd be asleep on my feet.

And then suddenly it was all over. My final chemo was on Monday, August 5, and the final radiation was on Friday, August 9. I still sleep as much, but each day I feel a little stronger, with a little bit more energy between naps.

Now we wait. I'll periodically have CT scans to check to see if the cancer returns. I'm optimistic and confident that it won't. The entire experience has gone better than I was warned it would. Actually, I feel like I've been encased in a bubble of miracles, from fantastic doctors and nurses to not losing my hair to not even missing much work to having a wonderfully supportive boss to the unending love and support from my friends and family.

So I'm signing off for now -- hopefully for good.

Sending my love to all of you who have held me in your thoughts and prayers and good wishes and love --

Marcee

Radiation Girl

Radiation therapy officially started on Tuesday, July 2. I was introduced to the machine, called a linear accelerator (LINAC), on Monday. The LINAC doubles as a CT scan, so what they were doing on Monday was taking it through its paces with CT scans, to make sure everything was targeted right.

It's really quite an interesting technological process. After all the CT and PET scans I've had, the doctors have a good picture of my insides. A computer program processes all those images and determines the best angle and shape of the x-ray beams. The "dry run" on Monday was to make sure the computer did its job right.

This is the best image I could find of the LINAC. I lie on the table and the machine rotates around me, stopping at 8 locations (including below me) and zaps me maybe a dozen times from each location. When it's above me I can watch the lights that represent the x-ray beams change shape; then there's the buzz of the x-ray, followed by the lights changing shape, then another buzz, and so on. It takes about 15 minutes for the complete process.

The side effects will take a while to kick in, so for the moment I have no physical reaction. Some time in the second week my skin will start to redden, as if it were sunburned, and the other ill effects I've been warned of -- difficulty swallowing, perhaps nausea, and ever more fatigue.

Oh, in case you're wondering, I do have today off for the Fourth. Hereafter, it'll be Monday through Friday.

The medical practice has several offices, and the doctor I met with first, Dr. M, wasn't the usual doc for the Olympia site. Yesterday I met with the regularly-assigned doc, Dr. S. I'm sad to say that my perfect record of absolutely wonderful medical practitioners didn't hold for Dr. S. He's okay, nothing really wrong with him, but I just don't have the confidence in him that I've had with all the others. I've often been surprised at how carefully the other docs have read my medical records and all the tests, and seem to know all about me and my cancer when I meet with them for the first time. Not so with Dr. S, who thought I also had breast cancer. Then he opened up my records and read the part where the first PET scan showed "activity" in my upper right breast, but it turned out to be nothing. I did ask him about the PET scan I had last week, and was extremely pleased to learn that it shows no cancer anywhere. It still leaves the question of why I'm still showing cancer markers. I haven't seen Dr. K in a while, but I'll see him tomorrow and maybe I'll find out that the cancer markers are finally gone.

Speaking of seeing Dr. K tomorrow: Chemo starts up again. And here's the weird and sort of embarrassing admission. Dr. K told me some time ago that he was going to continue chemo when I started radiation. There are two pieces of information that I knew: 1) Chemo is two Fridays out of three; and 2) Radiation is five days a week.  Yet somehow I didn't put those two pieces of information together to come up with the knowledge that on two Fridays out of three I'll be getting BOTH forms of treatment. Duh. Tomorrow's schedule is chemo beginning at 9:30, including a visit with Dr. K, so I should finish up just it time to drive across town and have radiation.

Oh joy.

Next Steps

It's been almost 3 weeks since my last chemo, and I can't honestly say that I feel like I "bounced back" any. If anything, I'm more tired than before. The smallest deviation from my rigid schedule of a quiet life with lots of naps really throws my body off. The family get-together for my niece Rae's graduation was fabulous; and I took naps and went to bed early. Nevertheless, when I returned home I was very sick and threw up throughout Sunday night and then slept all of Monday.

Last week I met for the first time with the Radiation Oncologist. My perfect record of having wonderful doctors still stands -- although this doc was actually filling in for the regular doc. They want me to have the type of treatment known as IMRT, but because it's the latest and greatest, it's also the most expensive. That means they're going to have to fight with the insurance company for authorization. The second choice is 3-dimensional conformal radiation therapy (3D-CRT). There, don't you feel better knowing that? Regardless of which method is used, the tentative plan is that I'll start radiation treatment next week, five days a week for EIGHT weeks. I'm not sure when I'll re-start chemo.

Because both daughters were visiting, they went with me to the appointment. I was soooo glad they were here to be part of at least a piece of the process. 

Meanwhile, I had the second PET scan, which I slept through. I don't know the results from that yet.

I also had the "treatment simulation." This involved their making a body mold that will be be used to ensure that I'm in exactly the same position each time. They tattooed me in three places, one low on my sternum and the other two sort of in my armpits. When my arms are over my head, which they will be when I have the treatments, the three dots line up in a straight line. Just another way to line me up properly.

The radiation oncologist warned me that the fatigue from starting up chemo again plus the fatigue from radiation will be very very hard on my body. The fatigue quotient will be much greater than 1 + 1. He gave me a big packet of information, including dietary restrictions. A small sampling: No coffee, no carbonated beverages, nothing too hot or too cold, nothing spicy, nothing "rough," such as chips, no orange juice, grapefruit juice, or tomato juice. In other words, soft, bland foods.

But the Universe blessed me with wonderful daughters who are fantastic cooks, so Brena is taking time off work under FMLA and will come stay with me for four or five weeks. It's a HUGE, gigantic load off my mind, because I have complete confidence that she'll come up with tasty things to eat that meet all the restrictions. And of course, it'll be just plain fun to be able to spend that much time with her.

Though as she pointed out, we really won't see much of each other since I sleep most of the time!

And finally, I'm going to Harmony Hill's Cancer Retreat from Friday through Sunday. What a wonderful way to mark this entry into the next phase of my cancer treatment!

Hiatus

Last Friday was the last of the originally-planned 8 chemo sessions, and will have about a month off before starting radiation therapy. Unfortunately, those darn ol' cancer markers are still not at zero, so the doctor is going to add some more chemo when I start radiation. I don't know how much more chemo I'll have -- I suppose it'll depend on the markers.

The medication to improve my appetite is working, and I've gained a few pounds back. I still don't have much energy to actually cook anything, but my friends keep me in good food.

The CT scan I had a couple of weeks ago was "unremarkable," and I'll have another PET scan next week. The PET scan is the one in which they'll inject me with radioactive stuff, so it's really the very best diagnostic scan. They'll be looking to see if any areas "light up" with unusual activity that might indicate another cancer site.

One unusual side effect of chemo that I haven't mentioned is that it's made my fingernails VERY strong! Like most women, I love it when my fingernails grow out a bit, but inevitable\y one will break off and then I'll have to cut them all back so they're not all out of balance. Well, since I started chemo I've actually had to cut my fingernails because they're just too long! Love it!

The best thing coming up is that Whitney, Andrew, and Brena will be here Thursday. Well, not actually "here," but we'll all be together in Bellingham to attend my niece Rae's college graduation. We'll all hang out together until Sunday and then head back to my place, where Whitney and Brena will stay for a week. Yippee! It's been ages and ages since they've been able to spend that much time with me, and it'll be wonderful. And believe me, I'll put them to work doing some of the household and garden chores I haven't been able to do. And because they're wonderful women, they'll do so with smiles.

The other upcoming event is my cousin Larrie's 80th birthday on June 21. If you're reading this blog, you probably know about Larrie, the "family secret" who was institutionalized at Rainier School at the age of 6. Three years ago Shelly just happened to see an article in the Seattle paper about the school, with a picture of Larrie. I've been visiting him once a month ever since, and became his legal guardian a year ago. I knew that he was one of the first people admitted when the school opened in 1939, but it wasn't until a couple of weeks ago that I learned he was actually admitted on the very first day. He's the longest-term resident of the school, so they're having a big party for him. He fills me up with joy to be with him. His diagnosis is autism, and he doesn't talk. I'm constantly amazed at how good he is at letting me know what he wants, even though he can't "tell" me. I always wonder what's going on inside his head, and I handle that by simply assuming that he understands everything I say.

I still tire easily, I still sleep a lot, and I still have a positive attitude. While being a bit apprehensive about radiation, in general I'm counting on it being no worse than chemo.

And as always, I remain eternally grateful for my wonderful circle of friends and family, who sustain and strengthen me.

Slacker blogger

Yes, it's true, I don't update the blog often enough. From my perspective, I feel like nothing's changed, so why update it, while my friends who aren't in regular contact with me want to know what's going on.

Oh well.

I've had 6 of the planned 8 chemo sessions, and continue to tolerate chemo well. But there are still those days when I'm so tired I simply nap off and on all day -- sometimes it's within a few days after chemo, some days it just seems to come out of the blue. Ditto for the bane of chemo, constipation, about which no more will be said.

Other than those days where the fatigue hits hard, in general I'd say the fatigue hasn't been progressive. It seemed to reach a plateau (valley?) early on, and hasn't changed.

Somewhere along the way, and I'm not exactly sure when, my attitude about chemo changed; I ceased to think of it as poisons being dumped into my body and started to think of it as healing elixirs, gently checking out everything inside of me and fixing anything that wasn't just right. It doesn't change the fact that the process of chemo is boring, but it made me feel better about it.

In the last post I said that it looked like I wasn't going to lose my hair, and I still haven't. Feels weird to not be part of the Bald Chemo Patient Club.

I've learned that my veins are very tiny. I suppose it's always been true, but in the usual course of events one doesn't have to bare one's veins for a needle, so I guess it just never stuck in my brain in the years between having to have blood drawn for some reason. Now that it's a regular thing, I'm keenly aware of how the nurses struggle with finding a vein. Last time it took two nurses and half an hour to find one. Now isn't that special?

Weight loss continues to be a problem. More accurately, lack of weight gain is a problem. The doctor put me on some meds that are supposed to increase my appetite and I feel like I'm eating more, but it's not changing the scales. My friends are fantastic in bringing meals to me. Last weekend Sherri's daughter Amanda came over for about 5 hours and cooked up dozens of single-serving meals and froze them. I faded out before she was finished and had to go take a nap, and woke up a couple of hours later with a filled freezer, a clean kitchen, and no sign of Amanda. What a blessing my friends (and their daughters!) are.

The only cloud in this sunny report is that cancer markers are still showing up in my blood tests. To give you a point of reference, my marker count before treatment was 27, and the last test was 7. I thought that was pretty good, but the doctor wasn't pleased. The half-life of the markers are known, and thus should decline at a specific rate, and by this time should be at zero. So back to the radiologists for another CT scan to see if they can find traces of any other cancer. My attitude? I'm not particularly worried. NOTHING about my cancer journey has been quite the expected path, from tolerating chemo well to not losing my hair to having a perfect record of wonderful medical professionals, so I just assume that their calculations on the rate of reduction of cancer markers failed to account for the Marcee Factor.

Of course, radiation is still ahead of me. I figure that will begin in early July and will be 5 days a week for 5-6 weeks. Side-effects of radiation include nausea, fatigue, and because they'll be targeting the esophagus, difficulty swallowing. I'm trying to keep my positive attitude reigned in just short of cocky -- I don't want the Cancer Treatment Gods to think I need to be slapped down a peg or two.

May and It's Spring!

There have been a series of reasons why I haven't written in a while. At first it was because there wasn't anything special going on; then my Big Sister Joyce came to visit for 4 days; then for the last few days I've been sick. Being in cancer treatment has about a gazillion negative things about it, one of them being that if you don't feel well there's never an easy reason. Is it in reaction to the chemo? Did I pick up a bug? Was it something I ate? In the end it really doesn't matter -- I felt terrible and couldn't eat anything and could only be vertical for about 4 minutes at a time, then I had to be back in bed. That started on Friday and this afternoon I'm not feeling a whole lot of improvement, but I seem to be able to be upright for up to half an hour. I couldn't even sit outside for our fabulous weather we've been having,even today when it's 85. Other than my fleeting moments of verticality, I'm only comfortable lying in a fetal position.

The days with Joyce were wonderful. She brought two full photo albums of ancestors, our shared childhood and into young adulthood.  We had hours of conversation and stories beginning with, "Do you remember when . . . ?"

I'm now at 5 weeks since beginning chemo, and still have not lost my hair. A week ago the doctor told me that 1 out of 10 never lose their hair. I never knew that. I thought hair loss was inevitable. And dang it all, I was all ready to be decked out in CUTE hats. And did you know there are hundreds of different ways to tie head scarves? Just go to YouTube and search for "tying chemo scarves" and you'll see what kinds of things I've been patiently practicing for weeks. Shoot. I could have used all that time making smaller clothes.

Yes, I'm still losing weight, and these last few days of whatever was going on with me made it even worse. When I first was diagnosed with cancer, everyone told me not to be shy about asking for what I need, and I assured everyone that I was perfectly comfortable asking for help and they needn't worry, if I needed something, I'd ask.

Another piece of self-image shattered. Darn it anyway, don't you hate when that happens? It turns out I'm not so good at asking. I'm fine with a specific thing, like a ride to and from one kind of medical procedure or another. Or invite myself along when someone says she's going to Costco. But as my stamina shrinks and my fatigue grows, day-to-day living is becoming more problematic. Changing the sheets on the bed. Cooking. Ah, cooking is especially a problem because I'm not very hungry, so it's hard to work up the umph to cook. Besides which, right now grocery shopping seems overwhelming.

I know as I write this that I have to take into account that something unusual has been going on the last few days, and I'm just plain sick. While emotionally it feels like it's the beginning of a long slide down, my head tells me that I'll snap out of this soon and feel at least a little better.

I sure hope so, or I'll have to make some radical improvement in my ability to articulate exactly what I need and when I need it.

Still Boring

Two days ago was the third chemo session, and once again, I came through it without any ill effects. From a superstitious and illogical perspective, I wonder if it's working. If I have cancer, why don't I feel worse?

The CT scan I had a couple of weeks ago was unremarkable. The only thing the doctor is worried about right now is that I continue to lose weight. I rarely experience the sensation of "I'm hungry," but I'll eat a decent portion if it's put in front of me. I think the problem is that when I'm feeling good I want to be doing something -- working in the garden or sewing or even taking care of mundane things that every household needs attention to. Cooking isn't on the list. Somehow I've got to get it on the list. 

Speaking of sewing, I've been pumping out chemo hats and scarves like crazy, but no sign yet of my hair falling out. The doctor said I'd lose my hair about 3 weeks into chemo, and we're now at that mark. Wassup?

Here's a good news/bad news thing. My rheumatoid arthritis is in 100% remission. No symptoms whatsoever, which has allowed me to be making all those chemo hats. I wondered if the cancer had scared the RA away, or maybe science would find that cancer cures RA. Whatever the cause, it's been a wonderful relief from the pain in my hands and feet and sometimes knees.

But Friday I figured out why the RA is sleeping. The nurse at the Chemo Spa printed out all the information on the four different drugs they were pumping into me that day. And guess what? Yep, you guessed it. One of the drugs is sometimes used to treat arthritis. So dang it all, I'll be sorry to see the end of chemo. Now how's that for weird?

I think I want to do a short rant on Health Insurance in America. There's no telling how long the cancer was growing in me, because I hadn't been to a doctor except a couple of times for specific purposes in four and a half years. For some of that time I was unemployed, then got a part-time job with a small organization that doesn't offer health insurance. I looked into the possibility of buying insurance on my own, but with the gap in coverage coupled with preexisting conditions and even including a high deductible, it would have cost me about $1800 a month. Umm, I don't have that much money.

So now I have Medicare and I love it, and am eternally grateful. Every few days I receive a stack of EOBs, the notice from the insurance carrier about what bills they've paid. The EOB shows the original billed amount, minus the Medicare discount, and what my portion is. The EOBs run quite a bit behind the date of service, but adding up the original amounts I've received so far comes in not much below $150,000. And the chemo isn't even showing up yet.

About 1 person in 7 in Washington is uninsured. What is happening to all these people? Some have chronic medical conditions that are going untreated. It's a myth that somehow people without insurance can get free medical care. Yes, emergency rooms are obliged to treat anyone who shows up, but neither the hospital nor any healthcare professional is required to provide ongoing medical care. Does anyone out there think that I somehow could have obtained free treatment for my cancer?

I'm receiving treatment and will probably survive because I have Medicare. The alternative is too awful to contemplate. 

Yes yes, of course I know that the Affordable Care Act enters a new phase in 2014. While I'm absolutely in favor of the concept, I've yet to learn exactly what the "affordable" part of the plan is going to mean. My skeptical side fears that decent insurance will continue to be out of reach of many, many people.

Cancer is boring

Here's my typical day: I wake up any time between 4 am and 6:30 am, although the latter constitutes "sleeping late" and doesn't happen often. Weekdays I work from 8 to noon, and by the end of that I'm ready to come home and take a nap. I sleep for 2 to 3 hours. When I get up I putz around and try to do something productive; then have something for dinner; then go to bed. All that activity would have taken me to somewhere between 5:30 and 7:30 pm.

But wait, the schedule doesn't always roll out so smoothly. It seems like more often than not I have to go get some new test (another CT scan last week) or stop by the radiology clinic the day before the CT scan to pick up a couple of bottles of a vile concoction charmingly referred to as "smoothies." Or I've run out of library books and have to go get more. Or I need a prescription renewed. Or normal things, like needing to go to the bank or grocery shopping.

And let us not forget that two Fridays out of three I'm wired up for about three hours while soothing, healing poisons wash through my body.

The second chemo session went as well as the first. I had no after-effects, no nausea, nothing. In fact, I felt pretty energetic on Saturday and Tina came over to help me clean the kitchen and living room, and on Sunday Sherri helped me cut out more chemo hats.  But then the sky fell yesterday, Monday, and I was too tired to get out of bed. I certainly didn't feel like I worked too hard or too much over the weekend, so I'm not sure whether it was a delayed reaction to Friday's chemicals, or just a tired day.

And what makes cancer so dang boring is that I can't just have a lazy day without worrying that it'll never go away. All of my clothes are hanging on me because I've lost so much weight: Do I buy more clothes or assume that I'll soon start gaining the weight back? Cancer has taken over every aspect of my life. And yes of course I do fun things, and I work in the garden and I read and I sew a little bit now and then and I hang out with my friends, but C A N C E R is the current soundtrack.      

Slow to update

I know my hundreds of followers (well, I know there are three or four of you out there) have been eagerly awaiting news of my first chemotherapy experience yesterday, and the aftermath.

I'm delighted to report that it was all boring, boring, boring. I rather expected that the actual chemo administration wouldn't be very exciting, and was glad to have my friend Pam with me, who's been through it herself. But really, all you do is sit there with an IV running into a vein for a couple of hours. The most unpleasant aspect of  the experience was the TWO big screen televisions. I intensely dislike television and don't know what it says about our society that we expect SOMEone to provide entertainment for us at all times.

But I digress.

The next big worry was how the chemo would make me feel. Nausea is the most common side effect, with gastrointestinal distress, dizziness, general spaciness, extreme fatigue following close behind. The nurses at the chemo center said the effects usually begin within 1 - 3 hours after treatment ends. So when Pam brought me home I took one of the anti-nausea pills and then just sort of sat there and waited. I ate the nice little bag of fruit she'd prepared for me. After a bit I had a small dish of ice cream. After another bit I had multiple handfuls of gluten-free chips. All of these activities, plus pacing, of course, took up a couple of hours and I was still feeling no adverse reactions, except being tired.

So at an entirely unseemly early hour, I simply went to bed, slept for 10 hours, and woke up refreshed and feeling great. I worked on a couple of hats to wear when my hair falls out, and when the weather turned warm and sunny I went outside and worked in the garden for hours. Don't worry, I took plenty of breaks and am now pleasantly tired and will probably be in bed before too long. I do love going to bed early, I have to admit, and now I have a good excuse.

Will my luck hold? I'm going to assume it will, and that the love and caring that surrounds me from all my friends and family will continue to hold me in this healing place.

Finally, a plan

The chemotherapy schedule has been established, and I'm not happy. I'd been led to believe that I'd be getting four rounds of chemo, once every three weeks. Nope. It's going to be twice every three weeks. Chemo, chemo, rest, repeat four times. Then we'll take a month off, followed by radiation five days a week for five or six weeks.

Yes yes, I know that everyone reacts differently to chemo, but it is a safe assumption that there will be at least a couple of days after each treatment when I'll feel lousy. When I anticipated that I'd feel bad one weekend out of three, that seemed manageable; two weeks out of three is a whole different ballgame.

Fatigue is an inevitable consequence of both chemo and radiation, and the effect is cumulative. Dr. K plotted a nice little graph for me showing that after each treatment I'll feel bad, will slowly recover, but each time I'll recover a little less and be a little further from my starting point.

Out of the many things that I've been lucky about throughout this, one certainly continues to be that we're moving into spring, not fall. No matter how bad I feel, I can be sitting on my back deck when summer finally arrives. Much better than heading into dreary, rainy, dark winter.

From the very beginning all the doctors have said that I'm healthy and have a good attitude, and will be able to tolerate aggressive treatment. I guess this is what they meant.

Lotsa Helping Hands

I haven't done much with Marcee's Super Strong Support site, but I imagine that's going to change. For those of you who live in the area and want to know how to help, start checking it next week and beyond, once I figure out how all this will affect me and what I'll need. Off the top of my head I can anticipate that I'll probably need meals and maybe rides. And if you like to poke around in gardens, there will be lots to do!

Retrospective

After nearly a week without pain meds and with the slowly-returning flow of "normal" life, I'm gobsmacked to look back and realize that I remember very very little of the last two weeks. Memories of the hospital stay are especially fuzzy; things since then are only slightly less fuzzed. It's especially odd since I could have sworn that I was pretty clear-headed and not affected by the medication.

Just goes to show -- something.

Which about sums up my thoughts right now.

When my primary care doctor told me on January 8 that the chest X-ray showed a mass in my lung, I blinked and said, "Okay." All these weeks and biopsies and tests and finally the surgery later, I feel like I'm still just blinking and saying, "Okay." None of this seems real -- not the cancer, not the recasting of the prognosis, nothing.

It's all been pretty much an out-of-body experience, watching myself march through the essential functions, disconnected from the actual experience. 

I thought I might write a bit about this, but can't find  the words to describe what it feels like to not feel what's been happening, so I'll simply end with the inadequate phrase, "It's weird." 

Gold Star Patient

Being a life-long overachiever can have its down side, but it's a good thing in this world of cancer recovery. I saw the surgeon at Swedish Hospital today, and he's very pleased with my recovery from the surgery. (I can't believe it was less than two weeks ago!) So indeed, with the support of my friends and family, I'm making a speedy recovery.

As is no surprise, the final pathology report does show some cancer in the lymph node in the esophagus. That's consistent with what we expected, and the good news is that it does not seem to be widespread. As the doc said, he's very happy with where we are  now from where he thought things were when we started. This is definitely a situation in which if he's happy, I'm happy.

Now I'll be transferred back to Dr. Kang here in Olympia for chemo. I don't know when that will start, but certainly within a couple of weeks.

My stint with round-the-clock babysitting is nearly over. Actually, it's been more like a non-stop pajama party. It'll feel strange to be alone, and also a positive step toward a return to normalcy.

Again, visitors welcome with advance notice!

And now it's Friday

I do understand it's perfectly normal, which doesn't make it any less disturbing. I've been drawn into an enigmatic vortex in which time / space / cause / effect / linearity -- and a whole bunch of other concepts free-floating around a sparsely inhabited brain -- just don't line up the way they used to.

And if you understood that sentence, I fear for you.

My recovery continues to go well. I'm in very little pain except for the times I work on my lung capacity with the breathing toy, and that hurts. I'm certainly not bed-ridden and can do most things just fine, thank you. I sleep a lot. A lot.

So here's the vortex thing: The world is just ever so slightly tilted and nothing quite makes sense. The unreality of having cancer; of having one of 5 lobes of my lungs removed; of not being able to hold a thought in my head for very long; of not giving a flying fig about local, national, or international events. Much of the time I feel like maybe they goofed in that surgery and took out part of my personality.

Kate, my dear dear friend from from my early 20s (and that was a very long time ago!) is arriving this afternoon to take over babysitting responsibilities from Sherri, and will stay until sometime next week. While the doctor insisted on only 3 days of having someone with me all the time, it's been really wonderful to not be alone through this. Just plain nice to have the company, even though I'm asleep most of the time.

Visitors continue to be welcome -- just call ahead to make sure I'll be awake!

Is anyone reading this? 

I've been told that it's a huge hassle to try to figure out how to leave a comment on the blog. Thank you, Google, for throwing up barriers to communication. Could you maybe drop me an email once in a while to let me know that someone out there is reading this?

Much love to all. 

We interrupt our normal programming to bring you this important announcement

It's nearly impossible for me to believe that Shelly's last post was on Friday, and now it's Monday evening. A lot's happened in a few days!

I was discharged from the hospital about noon on Saturday with a wide assortment of pain medication and assorted other meds to speed my recovery. The attitude towards "pain management" is to keep the patient as pain-free as possible and get me up and walking and moving and doing as much for myself as I can, and the approach seems to be a good one because I feel wonderful.

My basic medication schedule is to take meds every 3 hours, and sleep about half of that. So I'm up and down all night and all day, but I don't need assistance in and out of bed or to or from the bathroom or anything like that. Yes, my brain is a little fuzzy [Okay, a lot fuzzy] but that's usually good for a few laughs.

Shelly takes me for a little walk every day, and thankfully the weather's cooperated. I'm not very hungry most of the time, so her other important responsibility is to make sure that I eat something. This morning I took a shower all by myself, and it rates right up there with some of the world's finest showers.

One of the most unpleasant but important exercises is to breathe into an odd-looking breathing apparatus. I'm sure it has a name, but I don't know it, and it looks unusual enough that I think I might head down some maze I can't get myself out of it I tried to come up a descriptive term. There are surgical stitches all around my right side, from the edge of my ribs in front, curling down and back up to sort of the lower middle right in the back. And while the stitches are tender, they're not nearly as sore as they were just 36 hours ago. AND it's getting easier to move the little indicator on the unnamed breathing toy, which is the goal.

Shelly is staying with me until Wednesday, then Sherri for a few days until the pass is safe for Kate to cross from Northern Idaho. I'm probably ready to start receiving short visits, if you promise to remember that I tire easily. Call ahead of time to be sure it's one of my "awake" times!

Missing everyone -- Marcee

Marcee Unchained

Shelly here again with an update.  Marcee's recovery is amazing, truly amazing.  Early this morning oxygen was removed.  This afternoon the chest tube draining the removed lung area was removed along with the epidural tube administering the  drugs.  And just a bit ago the catheter was also removed.  Marcee is now in her bed unchained.  What a different look this is!

The test now will be how much oral pain killer she will need to keep the pain manageable.  The goal is to keep the pain down enough so that Marcee can take deep breaths and have strong coughs.

There is talk that tomorrow will be the day of release.

Feeling Groovy

Shelly here. Marcee's sister.  It is nearly 5 pm, post surgery, and Marcee is doing great.

I left Marcee this morning about 7:30 am as she was wheeled into surgery.  Around noonish today I got a call from the surgeon (the cute one) to tell me that surgery went well.  I was told that it would be about three hours after surgery when Marcee would be taken to her room and I could then join her again.  Surprisingly the call came to me just a little over two hours later.  Good sign, and I knew she was doing well.

It took me a few minutes to walk from my office to the hospital and find Marcee in her very nice, end of the hall, private room with a view of the Cascades.  Happy moment!  Marcee was very alert and looked great.

I've been hanging out with her the last few hours and at times she dozes.  Chicken soup and coffee ordered and first pangs of hunger.

The cute doctor stopped by just for a few minutes and again said the surgery went very well.

Marcee has 4 tasks listed on her "Plan for the Day" board:  1.  Pain control  2.  IS 10 - 15x/hour (a funny breathing thingy to encourage Marcee to expand her lungs) 3. Advance diet (good news!)  and 4.  Dangle (love this term - they'll have Marcee dangle off the side of the bed or maybe even stand later this evening).

Happy day!  Oh, the "feeling groovy" part is the way Marcee described herself.  Must be the drugs.

Countdown

Tomorrow is the cancer surgery. I'm pacing around the house like a caged kangaroo, trying to "get things done," though I can't think of anything that needs to be done. Water the plants. Put clean sheets on the guest room bed. Put away the clean clothes. Shampoo the carpet. Paint the exterior of the house.

It frequently occurs to me that none of this seems real. Cancer? Really? I have cancer? Tomorrow they're going to remove one lobe of my lung? Huh. How 'bout that.

There goes my last chance to be a body double for the Sports Illustrated swimsuit photo shoot. Too many scars to Photoshop out.

Everything is in place. I know what I have to do. I know not to eat anything after midnight. I have good wishes and prayers and all sorts of healing vibes from lots of people who love me. I feel deeply cared for.

And the only part that feels real is that I'm frightened. They're going to slice into my precious flesh and ease apart a couple of ribs and then poke around in places that were never intended to be poked. Then, in ways I can't possibly envision, they will cut away part of my right lung. All these many years it's worked without any help or thought from me, and now someone is going to cut part of it off.

What do they do with it?

But there is always some good news

We all know that Medicare is a mystery. I guess the guvment believes the myth that we all become wise as we age, so they assume we can figure it all out.

I'm glad to put in a plug for Brent Howard at http://www.evergreenstateinsurance.com/index.html. Brent walked me through all the options for Medicare, and my advice since then, when asked about the intricacies of Medicare, has been, "Call Brent." So when I was trying to figure out how much several days in the hospital, plus surgery, plus chemotherapy and maybe radiation after, is going to cost me, I just called Brent. Wow. Thank goodness for Medicare. And Brent. Say what you will about how confusing it can be, the Medicare coverage for what's coming is fantastic. That's a huge load off my mind.

Post Op

24/7 coverage is in place for when I return home. Between my sister Shelly and my two friends Sherri and Kate, I'll have someone with me for plenty of time after I return home.

As always, thanks for your good wishes!

Finally, some answers and an action plan

The astute reader would have picked up the impatience and -- yes, let's say it -- depression in the last post. The seemingly endless waiting, the eternal quest for just one more piece of information, the underlying fear that the string of good news couldn't last -- it was all taking a terrible toll on me.

But despair has taken a holiday. The doctors now seem to have all the information they need and are ready to move forward. The pathology report came in and showed only one lymph node on the esophagus with cancer. Zero cancer would have been our best hope, but I'm happy with the next best thing.

Surgery has been scheduled for bright and early Wednesday morning February 27. They'll remove that one lymph node and one lobe of my lung, where the lung cancer is. I'll be in the hospital for 3 - 5 days, then recovery at home for about 3 weeks. At some point afterwards, I'll have chemotherapy with perhaps a bit of radiation therapy as well. And no, I don't know when that will start nor how long it will last. I'm pretty committed to the One Step at a Time philosophy of coping.

Sherri will take me to Shelly's place in Seattle on Tuesday evening, then Shelly will deliver me to Swedish Hospital at 6:00 am.

The doctor has told me that the most painful part of the post-op recovery is that they will have to move aside a rib or two to get to the lung. Ouch. He has also assured me that they'll be using "aggressive pain management" afterwards to help ensure that I'll continue to take deep breaths. Most of us are aware that one of the primary concerns after just about any major surgery is getting the patient to breathe deeply and keep the lungs clear. One of the nurses at last Wednesday's biopsy procedure told me that insufficient breathing can bring on pneumonia within a few hours! So as you send out healing thoughts my way, be sure to send them on a wave of a deep breath.

Shelly will come home and stay with me for about 3 days, and after that I'm just not sure what I'm going to want or need. I'm pretty sure I'll continue to need a lot of help for at least a week, but I don't know yet what that help is going to look like. I'll give Shelly access to this blog so she can keep everyone updated.

The love and good wishes of my fabulous family and friends continue to give me strength. Deep thanks to all of you.

Hope and the Passage of Time

Is it just me, or is it easier to keep up hope when things are moving quickly? I guess it depends on the nature of those "things," doesn't it?

Yesterday was the biopsy of the esophageal lymph nodes, a procedure that left me unexpectedly wiped out. It can best be described as slicing a hole in my throat and shoving a periscope down. Of course, I felt nothing at the time, but I sure do today!

My hopes for a quick lab report were not met. As has just about everything throughout this process, it'll take longer than I thought, and we won't have the results until tomorrow (Friday).

Thus today's blog update is that there is no update.

I just might die of old age before they are through doing "just one more test." 

I'll put in a plug for Swedish Medical Center, though. What a fabulous facility and staff! And now, in addition to being in love with my surgeon, I'm in love with the anesthesiologist. I'm so fickle.

A Visit From Brena

How was I so lucky to have two such fabulous daughters? Whitney was here for a few days in late January, and Brena just left after a few days visit. Both pampered me, especially with fabulous meals and left me with a refrigerator full of lots of delicious things to eat.

Oh, and with both girls we had endless talks, lots of laughter and love, and a few tears.

Brena convinced me to pay more attention to my nutrition. Over the last several years I think I've eaten a pretty healthy diet -- lots of fruits and veggies and not a lot of meat -- but Brena came armed with lots of information about things I should be paying more attention to. I'll admit I was a bit resistant -- I don't like to be told what to do. (A trait, I might add, that was inherited by both of my daughters.) But after doing some of my own research, especially at the website for my beloved Harmony Hill, I had to admit she was right. So I'll be increasing the "good foods" I eat and scaling back on the not-so-good. Sadly, that includes sugar.

Sometimes life can be very hard.

Marcee's Super Strong Support 

Many thanks to my dear friend Sherri, who set up Marcee's Super Strong Support on the website Lotsa Helping Hands. I can post a notice of things I need help with, and those who are wanting to help can sign up for what fits with their interests and schedule.

The next medical procedure is the biopsy of the lymph nodes in the esophagus. This will be done at
Swedish Hospital in Seattle on Wednesday, Feb 20, and I'm covered for transportation for that day. If the results a negative, meaning no cancer there, the next procedure will be the biggie, the removal of one lobe of my lung, but I may not get much notice for when that will be scheduled. They may tell me the biopsy results AND the schedule for the surgery on Wednesday, and the second surgery may be as soon as Friday 2/22, but maybe not until early the following week.

And of course, the biopsy result may show cancer in the esophagus, which means no further surgery for a while.

But let's think positive, okay? Let's assume that I'll have only a day or two to find someone who can take me to Seattle. I'll post an update here as well as on the Marcee's Super Strong Support site.

I continue to feel physically well, though tired, and my spirits are good. Thank for all your love and support and good wishes!

PFT

How do cartoonists spell that sound of disgust and dismissal? Is it ffffffpt or pffffffft? Or something else entirely?

Today, PFT means Pulmonary Function Test. The first time I went to the pulmonologist the nurse had me blow into a tube, so I figured this was a more complicated version of the same thing.

Well, I was right and wrong. It was actually very interesting. I sat in a glass booth where the air pressure is carefully monitored, and asked to perform a variety of breathing tricks. Breathe normally. Take a big breath and let it out slowly. Take a big breath and exhale as quickly as you can. Pant. Now take this drug and do it all over again.

So, certainly not strenuous but it took surprisingly long, almost two hours. The respiratory therapist said everything looked really good.

The purpose of the test is to see if my lungs are healthy enough to withstand surgery, as well as if they're healthy enough to take on the extra work if one lobe is removed. It'll be the pulmonologist who makes the final call -- well, I guess the oncologist and thoracic surgeon will get to weigh in, too -- but it's nice to know that the overall impression is good.

My First-Ever MRI

Had the brain MRI today. I wonder if they found any brain cells? I ran some errands afterwards, and came home too tired to move. So not a very exciting or news-filled report!

Brena arrives tomorrow for a few days, and I will happily turn the kitchen over to her. Does anyone have a blender I can borrow for a few days?

First, some history

The blog shows my email address as eikenduthat@gmail.com. If you wish to send me an email, please send use marcees@comast.net. 

I thought I'd create this blog as an easy way to keep the people I love (and those who love me!) updated on the ever-changing issues related to my cancer diagnosis. While I don't make any promises that my posts won't from time to time reflect my innermost thoughts, my intention is for the information to be factual. Right now I'm run ragged with trying to remember what I've told to whom, and therefore not getting information to some people while telling others the same thing four times.

It's NOT a substitution for phone calls and other forms of communication! If I don't feel like talking on the phone, I simply won't answer, so don't hesitate to call whenever you want.

So first I'm going to go back to the beginning of this journey and describe what happened in some kind of chronological order.

I became eligible for Medicare on January 1. (Yeah yeah, I know it's hard to believe I'm that old.) On January 2 I went to my long-time doctor, Dr. Pouw, for a complete checkup. Since I hadn't had insurance for over 4 years, he ordered every test known to medical science -- including the obscure one for hemochromatosis, a rare disorder that my sister Joyce has. He also ordered a chest x-ray since I'm a smoker, but he said my lungs were clear and everything sounded good.

I had the lab work done on Jan 4 and the chest x-ray on Jan 7.

On Jan 8 Dr. Pouw's office called and asked me to pop over to the office so he could go over the test results with me. I walked into the office innocent as a lamb, expecting to hear that as usual, my blood work shows I'm healthy and everything is within normal limits. Instead, he gave me the news that I had two tumors in my lower right lung.

At that moment my brain mostly shut down, and hasn't altogether recovered.

The next day, Jan 9, I had a CT scan. Two days later, on Jan 11, the doctor called to confirm that the CT scan indicated cancer. He also said the scan showed some "activity" in my right underarm lymph node, right upper breast, and lymph nodes in my esophagus.

Definitely not good news. Very bad news. The possibility of cancer in 4 different sites is never good news.

On Jan 15 I had an appointment with Dr. Lampert, the pulmonologist, who reviewed both the x-ray and the CT scan. Sherri went with me to take notes and pay better attention than I could. He also wanted a PET scan, but went ahead two days later, Jan 17, with a needle biopsy for the lung. Maureen provided the transportation to and from the hospital. As expected, the biopsy confirmed cancer. (And my reaction was, "Didn't we already know that?")

The following Tuesday, Jan 21, I had the PET scan, which confirmed the "hot spots" noted in the CT scan.

Jan 23 was the first appointment with the oncologist, Dr. Kang (pronounced Kong). Again, Sherri was with me to take notes. Oh my goodness, what a nice man! As soon as he walked into the room I felt an immediate sense of calm. He asked lots and lots of questions and actually listened to the answers.

But as nice as he was, he couldn't soften the news. Given the spread of the cancer, I'm probably in Stage 4. If I opted for no treatment, I'd have somewhere between 6 months and a year. With chemotherapy treatment, at least 2 years. Of course he gave lots of caveats, with the assurance that statistics and averages don't have anything to do with how a particular individual will respond to treatment, and that my general health is good and that's a plus, and my attitude is good and that's another plus, and that it's entirely possible for me to have many more years.

But. Still. A hard thing to hear.

I had to wait another week, until Jan 30, for the second biopsy, which would sample the lymph node and breast.

On Feb 4 I had my second appointment with Dr.Kang. Really, I expected that the only topic would be what kind of chemicals they were going to use on me, and when chemo would begin. By this time they had ALL the results of ALL the tests, so what more is there to know?

But Wait, There's More

Nothing could have prepared me for what he had to say. He entered the room with a smile and said an odd thing: "You know what I'm going to tell you, don't you?"

Uh, no.

"The biopsies were NEGATIVE. You do not have cancer in your breast or lymph node."

Stunned silence while my brain tried to figure out what language he was speaking and how I might go about translating it. He helped things along by spelling it out patiently, "We might be talking Stage 2 instead of Stage 4."

Where Things Are Now

As mentioned before, the lymph nodes in the esophagus showed some suspicious activity. Doing a biopsy of the esophagus is a whole different ballgame, and cannot be done with a needle biopsy. It's a specialized procedure which involves making an incision in my neck, then sending a scope down the esophagus. For that I was referred to a specialist at Swedish Medical Center in Seattle, Dr. Vallierus, whom I met with yesterday, Feb 11. Maureen again was my chauffeur, and sister Shelly took notes during the appointment.  He spent an hour and a half with me, going over my records and drawing a diagram on a small flip chart (which he gave me when I left) and thoroughly explaining everything.

The biopsy is scheduled for Wednesday, Feb 20. Here's how things shake out:

If the biopsy is POSITIVE for cancer, I'll go through a course of radiation and chemotherapy in an effort to shrink the lymph node; then, at some unknown time in the future, he'll remove the lobe of the lung with the cancer and the affected lymph nodes. Prognosis is pretty good.

If the biopsy is NEGATIVE for cancer, I'll have the lobe removed a couple of days later. I'll have a routine course of chemo just to be sure, and then I'm done. Finished. Probably cancer-free.

And as if that isn't enough good news, his experienced hunch is that we're not going to find anything in the esophagus. There is a generalized inflammation in my chest area, and he thinks that's what we were seeing with the underarm lymph node and the breast area and that's what we're seeing in the esophagus.

Before the biopsy he wants me to have a brain scan MRI and a full pulmonary function test. He said that lung cancer "likes" the brain, so we just need to be sure the cancer hasn't gone on a trip to my brain. Again, nothing to indicate that's happened, just being thorough. Those tests are scheduled tomorrow (Wednesday) and Thursday.

The lobectomy hasn't been scheduled yet, though we're tentatively looking at Friday, Feb 22. I'll be in the hospital for 3-5 days, depending on how my recovery goes, with another 3 weeks of at-home recovery. More details about this as I learn them.

In honor of my years in mental health, I did respectfully request of Dr. Vallerius that we not call the procedure a "lobectomy," but a "lobotomy." He laughed, but would agree to my request.

That about brings things current, and now I'm going to go to bed. It's startling, unnerving, and a downright nuisance to be so very tired, and I also know it's to be expected.

My love to all of my wonderful friends and family.