Wednesday, August 26, 2009

SWMBO Report: Organizing Boston Mass First Trip

It has been three weeks since I last reported on SWMBO's battle with Lung Cancer, and today we see that she has been battling the Bureaucracy more than the Cancer.

I regret that report may have mislead readers to assume that her Oncologist was inept. To the contrary, he is diligent, professional, concerned, highly qualified and doing the best he can to find a cure for her health.

Unfortunately, this is a complex situation. He has gone as far as he can in offering ameliorative treatment for her condition, and now he is working hard (7 days a week, and on-call ) to provide her and all of his many patients with the best health care available. In a small town, (pop: 50,000) and without many Oncologists, his options are limited.

Fortunately, SWMBO (I've given up referring to her as "Sandie", which is her true name, because she has reverted to full Range Officer Mode) is not too shy to pick up the administrative baton and run with it.

The most recent occurrences incLude that (Boston) Massachussets General Hospital [MASS GENERAL]has determined, from the tissue samples sent to the, do not indicate that she is a candidate for the ALX type of lung cancer which has been successfully treated with drugs which are normally used in the treatment of another kind of cancer. (Skin Cancer?)

I had taken her to Saturday Lunch a couple of weeks ago when she received this news via a cell-phone call from her Oncologist, but while we were both very disappointed we managed to enjoy our lunch anyway.

During the past two weeks, SWMBO has been talking to her Oncologist, the Genotyping facility and UC Irvine (Ca) and the MASS GENERAL administrative staff.

SWMBO eventually got word that she is "enrolled" in the Cancer Genotyping Experimental program there. She needs to get a lot of information (a CD of the scans, more test results, personal medical records, etc.) moved from the local Oncologist to MASS GENERAL.

During the past week and weekend, SWMBO has spent much time and effort attempting to gather the medical history information required to (a) complete qualification for the experimental program, and (b) provide as much medical information as necessary for MASS GENERAL to completely understand the technical nature of her affliction, as well as the pharmaceutical history of her treatment.

(The rest is going to be long and boring, but if you wish to read ... do please feel free to skip to to the bottom of the article.)

I know I'm going to get some of this wrong, but here's the background.

She doesn't know yet (well, not until today) whether MASS GENERAL has received all the information needed ... which should have been sent from her Oncologist last week.

This morning she tried to phone her Oncologist's office to determine whether all records had been sent. She couldn't get through, so at 8am she drove from her home to the Oncologist's office.

When she walked in the door, the Office Manager said something like "Oh Oh".

During the ensuing discussion SWMBO discovered that not all of the required information (including the CDs of the various electronic scans) had not been sent to MASS GENERAL.
She responded to the office manager thus:

"I'm tierd of hearing excuses an it should have been done by now. So I would appreciate you doing it now while I'm here."
This is Full-Power SWMBO, taking charge and getting things done. Which is why I have stopped referring to here as "Sandie". It's not as much a take-charge name as "She ... Who Must Be Obeyed".

By the end of the day, SWMBO had heard from the Oncologist's office to the effect that all required information has been sent to MASS GENERAL .

We don't know how long it will be before MASS GENERAL replies with a definite 'first meeting' date. What we do know is that the first appointment will probably be just gathering patient history, assessing the patient. SWMBO has expressed to me the thought that she will probably spend one day traveling (by airplane, from the West Coast to the East Coast), a second day with the east-coast doctors being interviewed, and a third day traveling back to the West Coast, and to Home.

Usually, it's no great problem to fly from Coast to Coast, even in these post-2011 days. But her local Oncologist requires that she travel with an "Oxygen Generator", even at the 30,000 feet altitude thes large passenger planes go.

The airlines aren't comfortable with that.

For each airline she boards with her Oxygen Generator, she must produce a letter from her doctor that the air generator are mandatory, she must have it within reach, and before and after her flight as long as she has no general access to supplemental oxygen.

That comes in the form of an "Oxygen Generator", as I have said before. It is available from the local supplier ... but they need 3 week s in advance notice to reserve it. They're not cheap.

And SWMBO didn't now when she needed to travel s she reserved it today.

Her appointment is for September 15 ... which she only just learned today, and only by dint of pushing the system.

So she'll leave on the 14th, stay overnight again at Boston with her sister (who is giving up her September 15 birthday celebration to accompany SWMBO to Massachussetts), make her appointment of the 15th, stay overnight again at Boston, and come back to Oregn on the 15th.

Hopefully, MASS GENERAL willl have completed all necessary test and interviews on the single day and she won't have to go back until MASS GENERAL has completed all testing and has found a cure for her disease.

We don't know if that will ever happen. We just wish and hope for it.

And if nothing can be found to stop the course of the cancer in her lungs ... well, it's better to know. Y'know? Not much we can do about it if the Doctors can find a cure, so we find ourselves clinging to the not-so-faint hope that they can find a cure.

No comments: