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.