Dear Family, Friends, and not elsewhere classified (NEC) Loved Ones,
My Dad and Katie sent me a book called Crazy, Sexy Cancer Tips and one of the tips was an email list to keep loved ones up on what's going on without having to call or write a hundred people every time. So this is the inaugural message to my mail list! Anyone who would like to be removed from the list, please let me know. Thanks for the book, Dad and Katie!
So since this is the first, I'm going to put the whole diagnosis story in and let everyone know where things stand right now. On February 29th I went to see my internist because I had had six whole days of mid/upper back pain which just didn't seem like the mechanical back pain I see and treat all day every day. She agreed, checked a urinalysis and ordered a CT because she thought it might be an atypical kidney stone or gallbladder disease. The CT was on Tuesday, March 4th, and I will always feel sorry for her having to make that phone call. You can sugar coat things like "T10 lesion, right adrenal lesion and three lesions in the liver" to a lot of patients, but she knew I would know what was up. She had already scheduled MRIs of the Tspine and abdomen/pelvis and spoken with an oncologist when she called me Tuesday afternoon. I had the Tspine MRI on Wednesday and had blood drawn for chemistries. I had had a completely normal annual physical with chemistries in November. Now my AST was 46 and my ALT was 58 (both slightly elevated - less than twice normal). Everything else was OK. The Tspine MRI showed a cystic lesion in my right upper lung so they added a chest CT to the abdomen/pelvis MRI on Thursday. I saw the oncologist Thursday afternoon. We sent discs of all the scans to the interventional radiology department at St. Raphael's Hospital and on Friday I had a CT directed biopsy of the Tspine lesion. Monday the knew it was an adenocarcinoma. Tuesday the TTF1 stain was positive so presumptive lung.
My oncologist recommended Carboplatin/Taxol/Avastin chemotherapy and wanted me to get a port put in and start the next week. I was put into contact with a thoracic oncologist at Sloan Kettering who suggested that Tarceva (a targeted therapy that is an epithelial growth factor receptor inhibitor, oral and less toxic than the chemo my oncologist had recommended) was probably the best option for me. I made an appointment to trot down to Sloan Kettering on Friday, March 21st. My oncologist was worried about my liver function (if too high it would disqualify me for any clinical trials, Tarceva and even the Taxol component of the chemo he had recommended) so I agreed to proceed with the port on Monday, March 17 and a recheck of my liver function tests. Unfortunately, they had shot up in 12 days (for those of you reducing this to an Excel spreadsheet (yes, I'm looking at you, Chris!) the total bilirubin was 1.5 (up from .5), AST was 133, ALT was 273 and alk phos was 280). He spoke with the guy at Sloan Kettering as well as my old friend Clark Haskins in Albuquerque and all agreed it was time to proceed with the chemo.
Emma came to Connecticut for spring break and was my chemo buddy that first day. Three hours for the Taxol, 30 minutes for the Carboplatin and 90 minutes for the Avastin and that was AFTER premedication with Zantac, Decadron, Benadryl and Aloxi. I felt fine that day and Wednesday. Wednesday afternoon I got Neulasta to boost my white cell production and felt like I'd been run over by a truck on Thursday and Friday. Oncologist restarted Decadron for a couple of days and by Saturday I was functional again. No nausea to speak of. Awful, terrible heartburn (I guess I'm finally making stomach acid with this little stressor in my life) so I started Protonix on Wednesday, then pulled a chemo brain boner and took Decadron instead of Protonix (the bottles look the same, I promise!) on Thursday and Friday so I was awake all last night and miserable. Starting to settle down now that the Decadron is in a different drawer.
Chemo will be every 3rd Tuesday for four courses and then we'll recheck a scan to look for disease response. I do plan to head down to Sloan Kettering at whatever point there is a new treatment decision to be made (more chemo? Tarceva? Study drug?).
I saw the oncologist for a followup on Tuesday and I am cautiously optimistic because the total bilirubin was down to .34, AST down to 102 and ALT and alk phos were essentially stable at 282 and 381. So a little bit better 7 days after chemo after that awful 12 day run up was a big relief.
The odds for this cancer are pretty dismal (<15%>65% chance of responding to Tarceva even if disease progresses on or after the three drug chemotherapy. It's really all about trying to manage a chronic disease, as best I can tell. I keep reminding Robert that, while I don't have the common sense of the average woodchuck, I tend to score in the 99th percentile on standardized tests so that's what I'm aiming for - to be a rare case of prolonged remission.
The other thing that has become clear to me over the last few weeks is that, while I harbor these stupid cancer cells, you all have this cancer with me. Those of you who elect to stick with me through this are voluntarily opting for fear, frustration and potential pain. I'm just playing the hand that was dealt me. So thank you and take care of yourselves.
The next time there will be any information about how things are actually going will be at the end of May, after the 4th chemo. I'm still at work and they are being wonderful, supportive and flexible. The Medaris cousins are coming up for lunch in mid-April. Robert and I are heading to Dallas the last weekend in April for my 25th year medical school class reunion dinner. We will also get to see my dear friends from the chemistry and biology departments at SMU, Lindsay (who will be in North Texas with the show she is currently touring), Lynn, the Pierces and Robert's aunt. End of May, early June will bring Chris, Sheri and Emma to Connecticut (Emma is finally turning 21 - why does it seem like it has taken 37 years? and Philip is turning 14). I plan to head for NM in mid-July to catch up with Emma, who will be shadowing Faith's vet for the summer, Faith and Bruce, Claudia and anyone else who finds themselves in the Land of Enchantment around that time. I will also catch some beloved opera in Santa Fe. Depending how things are going late August/early September, Robert and I will try to take an Alaskan cruise - the one thing I have really, truly dreamed of and don't want to leave this life without doing.
I think that's it for now. I promise I will call on you when I need something and keep you up with the news. We'll do our best to answer phone calls as they come. I love you all more than I can say.