Well, I’m not sure about writing a blog and I make no promises to keep up with it. Time will tell.

I am a bit scared right now, but less unnerved than I was yesterday after speaking with Dr. Schuchert’s nurse. Depending upon the results of a PET/CT scan (scheduled for this Tuesday) and a Pulmonary Function Test (scheduled for Wednesday), Dr. Schuchert thinks it might be better for me to have a pulmonary lobectomy of the entire lower lobe of my left lung instead of the 1/3 wedge he spoke of in June. I’m not sure why this has me so spooked, more so than when I learned the previous Friday that the spot in the left lung had grown slightly. I suppose it is because I never had great lung capacity (I was the only one in my TAMU scuba class who couldn’t swim the length of a 25 meter pool underwater in one breath) and the lower lobe of the left lung is the largest lobe, so I’ll be losing over 25% of my lungs. I’ve been taking deep breaths ever since hearing the news, feeling how well they work. All because this cancer won’t leave me alone!

In case new people read this, I was diagnosed with cancer on January 16, 2009. I seem to get bad news like this on Fridays, often over the phone, so I end up stewing and worrying over the weekend. I'm beginning to dislike Fridays! It took us a month to determine that it started in my appendix and had spread throughout my abdomen. My first choice was to have the debulking surgery done in Houston at M. D. Anderson since I used to live in Houston, my brother and his family live in Sugar Land and many of my college friends who are now family live nearby and I hoped to have their support while I was in the hospital for the weeks it typically takes to recover.

Unfortunately, that surgeon felt my cancer was too advanced (massive disease was the term used by some of the oncologists) and recommended I try systemic chemotherapy first. While appendix cancer (yes, I had to be different and contract a rare cancer) is often treated like colon cancer, it often behaves differently. The first chemo cocktail slightly shrank half the tumors, but made the other half grow, also slightly. The second chemo cocktail made all the tumors grow. The MDA surgeon said no to surgery.

I did get into a phase I clinical trial and I was very lucky. The trial drug didn't have any side effects at my dosage level, but more importantly it either slowed down or stopped the growth of the tumors! I am very grateful to Dr. Hong for including me in the study and for his compassion and his taking the time to explain how the drug worked (as a science geek, molecular biologist, I have just enough knowledge to get me into trouble!) I can now say I truly am a lab rat! (Actually, Dr. Hong emphasized that I was a patient, not a guinea pig.)

While I was participating in the clinical trial, I was communicating with two of the surgeons who perform the cytoreduction surgery and hyperthermic intraperitoneal chemotherapy procedures that offer the best chance to beat this disease. I was very happy when Dr. Bartlett at UPMC in Pittsburgh said he would operate on me as I was also very excited by his research, which involves mutating viruses to attack specific cancers. I am hopeful that perhaps he can use the cancerous tissue he removed from my body in his research and perhaps help someone else. Dr. Bartlett, his team and all the nurses, doctors, and aides were wonderful. After a twelve hour surgery, Dr. Bartlett was able to remove all visible traces of the cancer and I hoped the heated chemotherapy that was sloshed inside my abdomen would kill any cancer cells that remained.

My three month CT scan showed the abdomen was clear! Unfortunately, two spots appeared, one in each lung. The six month CT scan showed the spot in the left lung hadn't changed, but the one in the right had grown slightly. When I had my ileostomy reversed in June, Dr. Schuchert removed a small wedge to remove the spot in the right lung. It proved to be cancerous. My bowels are mostly back to normal and I'm learning what I can and shouldn't eat. My lungs feel fine. My nine month CT scan showed the abdomen is still clear, and there is only a little scarring in the right lung. There are no new spots, but the spot in the left lung grew slightly.

Which brings us back to the start of this blog. I'm not quite certain of Dr. Schuchert's reasons for removing the entire lobe instead of the 1/3 lobe he talked about in June, but it might be due to the location of the spot. It is much deeper in the lung and closer to the pulmonary artery. So now we'll have to see the results of the two tests. The PET/CT scan will show activity and may show if there are other cancerous spots that are too small for the regular CT scan with contrast to show. And the pulmonary function test will show if I have enough lung capacity to withstand the loss of more than 25% of my lung tissue. This is pure speculation, but I feel the tests they were going to do with the tissue removed in June to see if there are any systemic chemotherapies that will kill the cancer cells were probably negative. So surgery is the only way to get rid of this cancer.

*sigh* Well, with all the good thoughts and support of my fabulous friends, I will get through whatever happens and I will evict this cancer. I hadn't planned on climbing any mountains anyway! Although, I have dreamed of climbing the Egyptian and Mayan pyramids. Will have to see if that is still possible after this!

To leave on a better note, Houston International Quilt Festival is going to expand their "Eye of the Quilter" exhibit and include haikus. Here are a few I'm toying with.


Suminagashi,                                                                  Help me find Zen this Fall                                               To create ripples.

 

"No new tumors, but                                                    The spot in your left lung grew."                                Fall lobectomy.

 

Blueberries, cherries                                                     Transition into orange,                                                    Red and yellow leaves.


I hope you have a great Labor Day weekend!

Ruth