From Columbia, Missouri

Brooke, almost 2 here, a bright light in my life

Since none of the new drugs seem to be working (I have been on 7 protocols since September, 2005 and all have failed) my doctor decided to go back to Adriamycin, the heavy duty breast cancer drug that I took for 6 months in 1997. At that time I took 2 other drugs with it, but my doctor tells me it is effective on its own. It can cause heart damage, however, so I had to get a Muga Scan, which is like a CT of the heart to determine. I had other heart tests the fateful day I was stuck in the ER, so that’s all we need. My heart is fine, which I already knew, as though that is even relevant.

On the same day, I also had another endoscopy to dilate my esophagus again. The kind of breast cancer I have is called "infiltrating lobular," and the cancer has not only invaded the muscles of the neck, back and shoulder, chest wall, and now my esophagus. It occasionally causes a mass, like the ones I had removed from my spine and from my rib cage.

The endoscopy required me to have a driver, as it involves an anesthetic, so a neighbor on the lake, who lives in Little Rock most of the time, drove me around. Andy and Kim had just moved from Little Rock to Columbia, Mo, so I have to solicit new drivers, as I lost the help from my daughter-in-law. All my treatments are in Little Rock which is about an hour’s drive from my home in Hot Springs, so driving me for treatment is a lot to ask of my friends.

Andy and Kim’s house hadn’t sold yet, so my friend dropped me back at the empty house, where I took a nap, and then picked me up later to take me to the surgeon to have the stitches removed from my side—just to round out the day. The incision healed nicely, which was of concern because the tissue there was radiated and is not normal tissue. I can swim again. Yea! I spent the night in the empty house and drove myself home the next morning.

ABOUT COLUMBIA
Andy has been working at a new job in Columbia for about a month and Kim and the kids moved just a few weeks ago. He got a great offer from a very small group here and will take over from the retiring neuro-radiologist guy. He mostly has been doing interventions, angios, coiling aneurysms, organ biopsies, central lines, etc. The latest thing he was doing was using a new device to pull clots right out of the head, so that the stoke patient could actually recover movement right on the table. This new technology is amazing. And so is Andy, of course.

Kim, Jacob, Emily, and Andy in front of their new home

This is the first time I have been to Columbia, and I love it. We have been exploring the area all week. It is a very exciting University town. Andy and I went to a lecture Wednesday night given by Greg Mortenson, the author of “Three Cups of Tea.” You may know the book as it has been on #1 on the NYTimes nonfiction list for 72 weeks. He was so interesting and enlightening about the Middle East, where he builds schools.

Thursday night, Andy dropped me downtown on his way to a planetarium show with Jacob, and I hung around a music festival for an hour of so, mostly watching the college students, and sniffing some sweet smelling aromas.

Friday night Andy took me to dinner for my birthday and then we planned to pick up Emily to see “Seussical the Musical.” During dinner, Kim called to tell us that Jon Oliver (of Daily Show fame) was performing, so Kim drove to meet us and we went to that instead. He was great—so spontaneous in responding to the students. (Emily didn’t care and we may go to the musical tonight.)

Birthday Cake with Emily and Jacob

I was supportive of this move because Andy needed a change and we all need to get out of Arkansas. (No offense to my southern friends.) Jacob and Emily (12 and 10) are really happy here, love their school, and their house is beautiful. I return to Little Rock and more chemo on Tues.

Oh, about chemo. I have had three doses (one a week) of the Adriamycin so far, relatively small doses until the last week, when he increased the dose by half. I have been feeling fine, too good actually. I don’t think the drug is working, as the nerve pain continues to escalate, and I have been having some spasms again. I know my doctor didn’t want to make me sick again, but I am going to lobby Tuesday for a larger dose. And for a PET scan. I have frequent PET scans (the radiology group in Little Rock treats me very well) which usually tell the story, or confirm what I think is happening. I haven’t had one since March.

THE OTHER GETZOFFS
Tim, Amy and Brooke (2) drove over from Dallas for the Labor Day weekend. Their older kids (12, 10, 8) were with their dad this weekend. Tim still works for his Denver/Boulder firm, mostly from home, but of course does some traveling for depos and trials. He can be on a conference call and change a diaper at the same time. He is a very happy man. Brooke is adorable and has become less shy of me, and much more loving to me, which fills my heart to the brim.

Tim and family in Colorado.
Cannon(9),Tim,Sydney(11),Carly(7),Amy, Brooke(2)

Mark just left for 2 months in Europe. He has been working 6 months (ER peds at Denver Childrens) and taking 6 months off. Last year he spent the 6 months and Mexico, Central and South America. This year, since June, he was in Mexico, drove across southwest, north to the San Juans for kayaking, and then home through Yellowstone, etc. He left for Europe, via Amsterdam at the first of September, will spend two months there, return to Mexico again in November and then back to work December 1. He is obviously unattached still, and has rented out his house in Denver out for 2 years. This is Mark’s is way of avoiding burnout, and playing out his inherited lust for faraway places.

Mark at Horseshoe Falls, Columbia Gorge,near Portland

Mark at the Reichstag (House of Parliament), Berlin

Last year his blog was: notesfromLatinAmerica.blogspot.com.
This year it's foolsparadise-Mark.blogspot.com. Lots of photos, history and, of course, witticisms.

Doin's in Hot Springs
In Hot Springs, we have been battered by the two recent storms, first Gustav and then Ike. I lost power for about 3 days last week. About half the town was down. The winds were awesome and my yard is a mess, Lots of limbs down, but I didn’t lose any trees. I plan to sell my house next spring, get rid of everything, and maybe hit the road again. I'd like to spend more time in California and Mexico if treatment allows, with lots of visits to the kids. I’m sure what this will look like it or if my health will even allow. But that is the plan for the best possible case. At worst case, I will be doing my kids a favor by cleaning everything out.

September Sunrise from my Dock, Lake Hamilton,Hot Springs

I can use your prayers and all your good thoughts that this chemo will begin to work.

Here's What's Happening

I have been terribly delinquent about writing. Lots of my news has been not so good, so I often don’t feel like writing anything. So here is a summary of some of this year.

I came home from Mexico, mid-March. I felt so good about getting to spend almost three months there, for the first time in 3 years. I was relatively stable on a once-a-month drug called Genzar, so I did fly home once in Jan and again in Feb for treatment. I did stretch them out to 5-6 weeks apart. In March, my friend Wendy from CA flew down to Puerto Vallarta and drove home with me, or rather drove me home.  We were going to do a sidetrip to Queretero, but I got sick with a virus the day we left, so we just headed for the border and spent a few days together in Dallas before she flew home.

I did NOT want to come home.  There's something about Chacala that is sooo good for me. The house looks great with the new addition.  Three bedrooms, another bath, and rooftop view of the bay and sunset.  I had 23 guests over the 3 months. Build bedrooms and they will come.

             New second floor of Casa de Ana

I hadn't had treatment for 6 weeks when I got home, but had a good PET scan.  The bone lesion on my sternum has resolved, and the other areas in my chest, neck and shoulder only slightly "hotter." I started back to line dancing class and began walking hills every day.  I was looking forward to spending more time away since I was fairly stable. Hah!

May Developments

I say “hah” because in May I began having excruciating shoulder and neck nerve and muscle spasms, usually in the middle of the night and lasting for 4-5 hours, An MRI revealed a mass near my spine that was impinging on the nerve there. I was pretty miserable on one hand, and on the other I feel so blessed that in all these 11 years of this cancer thing I have not had to endure much physical pain.

We scheduled a surgery mid-June, interfering with my return to Mexico with Mark. We were to be there 3 weeks doing some work on the house, but I was only there 10 days.

I so loved being in Chacala when there were no tourists.  I really had time to visit with Mexican friends and work on my Spanish with them.  A friend there was diagnosed with breast cancer this spring, had a mastectomy and is in chemo, so I especially wanted to spend time with her. The water was warm and luscious and I swam a couple of times each day. And I got to see the arrival of the crabs—they come out of hibernation in June. There were millions of land crabs all over the village and smashed in the streets.  A few even came in my house.  They are big, about the size of a saucer.

Home and Surgery

The neck surgery went well—part of the mass was removed and the bone was carved away at C7-8 to make more room for the nerve, and the spasms stopped. But I was left with chronic nerve pain in my arm, two fingers that vary from numb to electric, and a sharp pain in my neck, all of which kept me on painkillers for several months, actually until just a few weeks ago (September),

I had to wait a few weeks after the surgery to begin a new chemo, so over the 4th of July, Emily, 10, and I flew to Utah for the Intergenerational ElderHostel trip that we had planned earlier in the spring.. It was pretty wonderful except for the nerve pain, my usual fatigue. I also began to have trouble swallowing, a new symptom. With help from some of the other grandparents, I was able to bow out and rest when I needed to. (I’ll write more about the Intergeneration Elder Hostel late. You Grandparents out there need to look into it.)

         Emily and Grandma getting ready to climb into a hot air balloon

When I got back to Little Rock that Monday and went in for chemo, I happened to mention that I was having trouble swallowing. Predictably, my doctor insisted on a CT scan, which showed the walls of my esophagus to be enlarged. We scheduled an endoscopy and dilation of the esophagus, so chemotherapy was postponed some more, which was frustrating for me. I was anxious to get on something that worked. During the endoscopy, the doctor saw a little gastritis, so put me on Prilosec. I have to cool it on the Advil. I hate the other pain pills, though.

New Chemo a Disaster

So, finally started a new chemo late in July. Ixempro, and it's been downhill ever since. I became really sick with low grade fever, chills, headache, stomach problems, and dizziness, I also began losing my hair, not completely, only a major thinning, which my already thin hair couldn’t really afford. I reread parts of Travels With Annie to remind myself how I felt in 1997 when I first began chemotherapy. I was sure I was in the end stage of the disease and not sure I was going to make it through the year. Somewhere around this time, I also had mass removed from my rib cage on the left side. Margins from both surgeries were positive, which means not clean.

I should add that these appointments and surgeries happen very quickly, as everyone knows Andy, and they all squeeze me in as soon as possible. The scans happen immediately. I just go downstairs from my oncologist’s office to Andy’s radiology group and they work me in quickly, as well. By the time I go back upstairs, the radiologist has talked to my doctor and we can procede to make a plan. I am very aware of and grateful for the special treatment I receive from the medical community in Little Rock. I feel so angry (and guilty) when a friend tells me that they had a scan and have to wait until their appointment the next week to get the results. “Normal” health care procedures are inhumane and disgraceful.

Sidetrip for Fun

Since the new chemo was scheduled to be once a month, and I had 3 weeks to recover from the bad chemo experience, I decided to “recover” by attending a long planned sorority reunion on Washington Island, WI. I was not feeling that great, but couldn’t pass this up. I hadn’t seen some of these women for 40 years or so, and I think this will be the last time I’ll see most of them. Earlier, I had planned on doing a road trip and visiting other friends in Wisconsin, but that wasn’t possible under the circustances. I instead flew to Chicago and rode up through Door County to Washington Island with a sister, Lucy, and her boyfriend. There were 12 of us there, out of a graduating class of 17, so, as you can imagine, we had a raucous time. One of the sisters, Melissa, and her husband have had a cabin on the Island for 30 some years. What a beautiful area that is! One day we took the ferry over to Rock Island State Park, and hiked up to the lighthouse there. (I brought up the rear, but I made it.) I wasn't 100% myself, but was with nurturing, loving, old friends, and that was energizing and healing.

I returned home from Wisconsin and went directly to my doctor's office for chemo. As it turned out, we just had a consult, agreeing that the chemo that made me so sick didn’t work (the tumor in my muscles are palpable, so I know immediately if something is working.). We began a new drug, Navelbean, and during the infusion I began to have an allergic reaction—chest and throat tightening mainly. They gave me some Benedryl, and I was sure I was going to be fine, but my doctor called 911 and I got to ride across the street in an ambulance and spend the rest of the day in the ER. I may never forgive my doctor for that.

So my recent life revolves around cancer stuff, with some fun squeezed in. It used to be the other way around. That is, my travel plans were priority and I fit chemo in when I could. That has worked fine since my recurrence in Sept 05, but now, finding a drug that works seems to be a priority. I feel really blessed that I was able to go to Chacala last year and to the reunion in WIS.

More about our next choice of chemo next time I write, which will be soon, I promise.

Sunrise at my home on Lake Hamilton, not a bad place to be if you can't be in Mexico.