A Year of Feeding People -- The Project

As I mentioned on Facebook (if that's how you got to here), I am starting something new. Let's call it "A Year of Feeding People".

This current year, 2013, was awful in many ways, not to be listed here. But we have made it through and for that I am supremely thankful. I have decided to celebrate my thanks in the traditional Italian way ... feeding people. 

My Daddy used to tell us that no one, no matter how high or low their social status, ever refused to put their feet under his table and eat his food. I think he meant that feeding people was the great equalizer. When we sit around a table together and share food, it becomes more difficult to hate them. One can disagree, even dislike, someone with whom you have shared a meal, but hating is not likely. 

Combine my Daddy's philosophy with one I read about Mamma Leone (of New York restaurant fame). Her son, Gene, whose cookbook I have, said that his mother was happiest when she was in the kitchen preparing a meal for guests. I believe there is a great sense of appreciation for people that arises when you prepare food for them. 

In addition to all the wonderful philosophy expressed above, I love to cook! George and I are blessed with such wonderful, interesting family and friends that gathering some of them together each month to eat something I have prepared especially for them seems to be the perfect way to celebrate our thanks for the blessings that have come our way during our lives. A way to concentrate on the good, rather than the bad. 

I will use this blog to announce when the invitations have gone out each month, share the menus, perhaps discuss the cooking, describe the meal and the conversation that occurred, and, of course, thank my friends and family for being who they are. More info tomorrow.

Mangia!!

June 19 - More waiting

Spent some time with Dr. Liem, radiation oncologist, today. Laid out the treatment plan. But wait ... it appears I haven't yet been scanned enough, so he would like a PET scan. It can be done at the same time as the first CT scan but he wants to confer with the PET technician before he schedules everything.

So we wait again. Should hear from him by Thursday with a date/time for the CT/PET scan. The CT purpose for this scan is to build a 3-D image of my body and also create a body mold. The 3-D image will be used to design the distribution of radiation so it is focused most tightly on the tumor. The body mold will be used every time I get radiation to ensure I am always in the same position.

If they do a PET scan, it will be used as a baseline for follow up. He says renal cell cancer glows more brightly on a PET scan.

So here's the plan as I understand it.
1. I have the CT/PET scan to create baseline images and body mold. This appointment is yet to be determined ... waiting to hear back from Dr. Liem.

2. Two weeks after the CT/PET scan, the treatments can begin. These will be about 10 minutes each ... I originally thought 20 minutes, but that's the amount of time I should schedule, not the amount of time for the scan itself. I will have up to 20 of these treatments, depending on how I react in terms of side effects.

3.Then we wait approx 3 months and take another look with either CT or PET. We monitor every three months for as long as a year. We will be able to tell during that time one of the three possible reactions: (i) the tumor has shrunk ... hooray! (ii) the tumor has stopped growing ... also hooray! (iii) the tumor is still growing ... time to look for another treatment.

I had some new revelations during the discussion of details:
1. I had thought the response would be much faster. This news that we might wait as long as a year to determine if this has "worked" was quite a surprise.

2. Much as I hope we can shrink this tumor to nothingness, just halting the growth of the tumor is a success. Of course I want this thing out of me, but not being able to do that, halting its growth is a good option. As Dr. Liem said ... there's no problem with it just sitting there and doing nothing.

3. I finally got a mental model for how to think about this as a chronic disease. I already have a chronic disease ... heart disease. I treat it daily with medication ... I occasionally have to spend some time in the hospital due to an acute attack ... no one could look at me and tell I am sick ... life goes on. This is so different from having a surgery, a long hospital stay, and a longer recovery and then moving on. I can live with this and just keep going on.

Interesting!

June 12 - Headed home

Finalized the treatment plan with Dr. Corn today. We had basically three options on the table:

1.  Surgery - His surgeon said the surgery would not be impossible, but he certainly wouldn't recommend it as the first option. So we put that in our back pocket and move on to:

2.  Systemic therapies - like chemo, these are ingested or injected. They work throughout my entire system, targeting the cell's reproductive cycles or other important pathways. Problem with these ... they boost blood pressure, sometimes to stroke level. Also, after all the scans on Friday and yesterday, we are certain this recurrence is very localized. No other spots anywhere to be found. So a systemic treatment isn't really necessary, if there is a localized treatment, without the systemic side effects. That leads us back to:

3. Tomotherapy, which I first discussed with Dr. Liem in Albuquerque. Dr. Corn in Houston thinks this is the best first step for several reasons ... if we do another scan in a couple of months, and nothing has changed or the tumor has grown, we move on to systemic therapy. Tomo is very localized and doesn't have nearly the severity of side effects ... some nausea, some fatigue, but nothing terrible. Then Dr. Corn says he talked with his Tomo guy and the recommendation is that I return to Albuquerque for this therapy.

Dr. Corn is going to call Dr. Leim and they are going to discuss Tomotherapy in general and my case in particular. He will then call me on Thursday and, if he likes the way the discussion goes tomorrow, he will let me know how to proceed with treatment in Albuquerque. If, by chance, he should hear something from Dr. Liem that puts him off, we will replan for Tomotherapy in Houston ... but that's a very slim chance.

So, I am happy with the prognosis. I am getting comfortable with treating this like a chronic disease. And I am very happy to have the prospect of being treated at home, rather than having to uproot to Houston for some long period of time.

There is a light at the end of the tunnel.

June 9 - Poked, prodded, and tested

Met with Dr. Paul Corn at 10AM yesterday. I like him.He offered us several alternative biological therapies, talked at length about tomotherapy, and is willing to discuss my records with his surgeon. No avenue cut off yet. So, the upshot is, by running all the tests at MD Anderson, he would have enough data to advise on treatments and have a plan of attack by the time I head back to Albuquerque.

That means I spent all day Friday being poked, prodded, and tested. I had a CT scan, bone scan, complete blood work-up (four vials!), and chest x-ray. It was a long and exhausting day. Still facing an MRI on Monday. That will conclude the tests and we will meet with him on Tuesday. I am very encouraged by this, more so than when we returned from Dr. Lee's visit. I think MD Anderson sees lots more of my type of cancer and can offer  many different therapies that UNM might not have available. I think we lucked into Dr. Heywood, the surgeon who did my liver resections, and now he's not practicing at UNM any more. So I will be treated in Houston.

It may mean finding an apartment to rent for a couple of months here and finding someone to house-sit for us in Albuquerque, but it's not all bad. I get to see Houston family and friends more frequently. How's that for finding a silver lining??

Spent today with family. Lunch with Aunt Pat and Sylvia ... dinner with the Campise cousins. Great fun reminiscing, catching up on the latest news, laughing, and just talking. Ashley was able to come along and show off baby Andrew, who proved what a good baby he was by sleeping most of the time. Back at the hotel now, tired and ready for bed.

Feeling more upbeat than I have in quite a while.

May 23 - Houston, We Have an Appointment

Finally! An appointment with Dr. Corn at MD Anderson. Friday, June 8 at 9AM! Ashley will drive in so George, Ashley and I will all be in town.

I know there are lots of family and friends to see during this trip, and I thought I would be clever and put up a public calendar that anyone could add to ... but Google calendars seems to be giving me trouble in making the calendar public so anyone can post. So go ahead and send me e-mail and I will put my schedule together. Or I will spend some time tomorrow on the phone arranging things.

Looking forward to see everybody and even more to getting this show on the road!

May 18 ... Coasting Along

Been a while since the last post and most of the time has been spent either waiting or haranguing docs and their assistants. Have I mentioned how much I hate phone tag? Especially when someone's message says they will return calls within 24 hours and then you never hear from them! Why don't these people learn to manage expectations? Tell me you won't return my call for two days then I'll be pleasantly surprised when you call back in one day. It's one of my pet peeves and those of you who have ever worked for me or with me remember me lecturing about phone call returns. Geez!!

But I do have some wheels turning. Kelly, Dr. Lee's medical assistant, is supposed to have faxed the appropriate medical records to Pat at MD Anderson yesterday. Pat did a good job of managing expectations by telling me it could take a couple of days to get an appointment set once she had the records. And she gave me her direct phone line so I could call and see if the fax made it. Now that's how to handle a client/customer/patient!

I am still waiting to see Dr. Morris, the surgeon here. I spoke with Kelly yesterday and she said that she is still waiting for Dr. Lee to give her the OK for the referral. Don't know exactly what is holding him up. Whether he is busy or reluctant. But the result is the same ... I wait. If I get in at MD Anderson, this one isn't as important to me, so I'm not stressing over it as much. But still frustrating.

George found a clinical trial going on in Scottsdale (http://clinicaltrials.gov/ct2/show/NCT01300533) ... I will likely e-mail them today for more information. Although it is a phase I trial and they are just trying to determine toxicity and dose levels, it might be something to consider. Need more info though.

The week has gone by slowly and depressingly. I want things to move along quickly and they aren't. Thank heavens I have this cruise to look forward to. If Melissa is reading this, I don't know what my recurrence means for the opportunity to be a cruise escort, but I am still very interested. We will have to talk on the cruise.

Kate and Mark will be on the cruise as well. It will be great to see some familiar faces and have the distraction of not thinking about cancer for an entire week. I will take my laptop and blog of course, but it will be about cruising and Alaska.

Thanks to all who have written or called or posted on Facebook that they are praying for me. Although I am not a religious person, I am very spiritual and I believe I can feel the prayers and good thoughts supporting me. I really, really appreciate all of you!

May 12 ... Options, options, options

Yesterday was very busy and informative. Met with a radiation oncologist at UNMH and found out everything we wanted to know (plus some) about tomotherapy.

First, he agrees that surgery is still the best bet. And strongly agreed with the trip to Houston to talk to folks there and see if I can find a surgeon who will work on me.

That being said, we found out some very good news about tomotherapy. Although we have heard over and over, and read many times, that kidney cancer is specifically resistant to radiation, he says "anything can be killed if you hit it hard enough".!! The problem with kidney cancer is that it takes more radiation to kill it than other types of cancer and it typically occurs in areas where there are other vital organs that would be too damaged by the radiation it takes to kill the cancer.

But in my case ... the tumors are not close to the small intestine and bowel, which means they can hit them with more radiation and tomotherapy is a much more focused delivery of the radiation, so the damage to surrounding tissue is much less. This means they can hit them with plenty of radiation without killing the surrounding vital organs (and me!). He gives tomotherapy a 50% chance of killing the tumors off completely! That's VERY different that what we have understood in the past. It's good to talk with an expert.

He described the therapy ... ideally 20 sessions, 20-30 mins each, once a day Mon-Fri. So that's 4 weeks of radiation therapy. Major side effects are nausea and fatigue. He could be ready to start whenever we are, but encouraged the visit to Houston, since this is slow-growing and I have some time to decide.

Then we went upstairs to the oncologist's office. I have been talking with his office manager about the referrals to MD Anderson and a surgeon here. Finally caught her (Kelly) face to face. She is very nice and extremely helpful. She went and tracked down Dr. Lee to find out that my e-mails to him had landed in his spam folder (go figure). So she is arranging the appointment with the local surgeon. She also called MD Anderson right then to find out that, since I am a former patient, with a medical record number, I can call and get my own appointment. It was after 5PM in Houston by the time we got home, so I will be calling them first thing Monday morning.

I feel so much better. We are moving along the data gathering path and seem to have some options that hold out a little hope.