Thursday 01/13/11

I haven’t written much the past couple of days so I’m going to go back and fill in.

The cancer cells on my peritoneum create inflammation, which in turn causes fluid to be created. The fluid (ascites) just keeps building in my abdomen until I have to go have it drained (paracentesis). Last Thursday 01/06/11 they drained off 3.5 liters of fluid. When I am at that point it feels like a steel band is wrapped around my upper abdomen, making breathing and eating very uncomfortable. The fluid pushes up against my diaphragm so I am only able to take relatively shallow breaths and it also pushes against my stomach so I’m only able to eat a couple of bites of food. Eating much of anything makes it feel even more full and uncomfortable.

This past Tuesday I was at that point again. First, I thought I’d explain what a PET scan is for anyone who doesn’t know and might be interested. The day before the test, Monday, I had only a diet of meat and cheese. No carbs and no sugar. I could have nothing but water after midnight Monday night. After checking in on Tuesday, I filled out a bunch of papers with a coordinator and then she had me drink 16oz of, what I think was Gatorade, with some potion in it. It really was pretty good. But the liquid continued to add to my discomfort with the ascites. Then a very nice man came and took me into a room with a recliner. He explained what he was going to do very patiently and thoroughly. He said that cancer cells are attracted to sugar. By eliminating the carbs and sugars the day before, the cancer cells were hungry for sugar. So the Gatorade potion would cause the cancer cells to light up on the scan. He put an IV needle into the back of my right hand and injected some saline. Then he went and got a metal box that contained a syringe. It has radioactive medium in it and that was injected into the IV tube. Then I just sat for 45 minutes to let that circulate throughout my body. He came and took me into the scanner room. The PET scanner is longer than a CT scanner (which is like a big donut), but not as long as an MRI scanner. Being as full of the ascites as I was, lying down flat on my back extremely uncomfortable. It felt like I was drowning. But after a few minutes of internal mental cheerleading, I was able to calm down and concentrate on the fact that I could still breathe, even though it was shallow. He had me cross my arms over my head and for 28 minutes the table slid back and forth, in and out, so that different parts could be scanned. I was on the edge of panic a few times due to the breathing issue, but I called on all of the mental resources I have developed over the years, especially during the past 4.5 years of my PhD program at the Institute of Transpersonal Psychology (ITP). I focused on the breath, mentally saying Ho on the in breath and Hum on the outbreath. When my head was either out of, or close to being out of the tube at different times I would feel the cool air and imagine myself flying over beautiful countryside. At one point, I even mentally chanted (thinking of you, Cheryl). Then it was over and the tech gave me oatmeal cookies and some juice. Since all of this started, my desire for anything sweet is gone so I was grateful when I got out to the waiting room and Lindsay had brought me KFC. I was so hungry but only able to eat a few bites.

That evening was really difficult. I was so hungry but knew that every bite made my breathing more difficult. I thought about my wise mentor, Mark Brady, who said to ask “what do you love, and what do you love more?” At that point breathing was getting my vote. I tried to sleep in the bed (I’m at Lindsay’s so I have Taylor’s bed) and even with my regular sleep meds was only able to sleep until 1am. Then I got up and sat on the recliner in the living room, counting the hours. Lindsay and I took Taylor to school and then headed to the ER. I had an appointment for another paracentesis for Friday, but I knew I would not make it till then. It not busy so they got me in right away. They did an ultrasound to see where the pockets of fluid had accumulated. The doctor numbed the area and then pushed a catheter through the peritoneal wall. A needle is inserted into a vacuum bottle and then the fluid drains. He did not think there would be too much, but 3.2 liters ended up being drained. Although the procedure is not comfortable, after it is done I feel terrific. I can take full breaths of air and I can eat! I had to drink a lot of water as I had become dehydrated during my time of limiting what I put in my stomach. Lindsay took me to a restaurant and I had half a tuna melt sandwich. Talk about mindfulness eating! Every mouthful was an explosion of flavors and textures. I chewed and chewed with my eyes closed just savoring each and every bite. To eat and breathe...I will never take those things for granted again. I already have another appointment for the same procedure for next Tuesday.

We then picked up Taylor from school and dropped her at her friend’s house. On to the next appointment of getting my pre-op labs done. I had blood drawn at the hospital, but the doc at UCI (who will be doing my surgery next week) wanted more tests than my visit at the ER warranted. So we went to the lab and found that they could do all of the tests except the “type and screen.” We called another lab across the street and they could do that test, however they were not contracted with my HMO. So we called UCI and they said that if I couldn’t get it done before, I could arrive early on the day of surgery and they would do it there. So other than that one test, I was done with the labs. I had had a chest x-ray on Tuesday for the pre-op, but then yesterday at the ER they had me do another one.

On Friday I will be having a porta-cath insertion. This is a catheter that will be inserted in my upper right chest and into a vein, right about where the shoulder and chest meet. The catheter will have skin covering it and will just be a small round protrusion. This allows the chemo to be administered into a much larger vein than on the hand and arm. Also when I’m in the hospital next week I won’t have to get stuck so many times as they can draw blood and put IV fluids into that porta-cath. Yesterday, I had a consultation with that surgeon. I was so relieved to know that I would be given meds that although they would not knock me out completely, would put me in a twilight sleep. If any of you have had an EGD or colonoscopy…that is the kind of sedation I will get. I had been so afraid that it was going to just be under local. Yea! So I can eat, breathe, and now not be so concerned about Friday’s procedure.

We came back to Lindsay’s and she made me two of the most amazing tacos I have every eaten. Every mouthful was a cause to celebrate. After not using my lungs effectively the past couple of days, I had to make a conscious effort to taking deep breaths. Feels so good to breathe! Even though Shannon drives 120 miles each way to work, he made time to come see me for a few minutes last night. He has to keep the house and critters taken care of on top of his job and crazy commute.

Today Lindsay is already gone running. She is training for a half marathon that is scheduled for Feb 6. She will be running 9 miles this morning. Then she has a hair appointment at 10 and I have an appointment with my primary doctor for a basic pre-op physical at 11am. Then we are free for the rest of the day.

I have been thinking a lot about my hair. Due to the type of chemo I will be getting it is almost certain I will be a cue ball for the months of chemo. I have not had short hair for 30 years. But I am thinking that it is time to at least cut it short in preparation. I can donate my hair to Locks for Love, who makes wigs for cancer patients. That feels good. But my hair is so much of how I identify myself. It seems so silly with all the other things going on to even give it a second thought, but it is a loss. Lindsay said there are sites on the web where we can put a picture of me and then virtually try on different hairstyles. I think we will be doing that this afternoon. Perhaps if I can gradually, over this next week, get used to the idea, I can get it done before the big surgery at UCI that is scheduled for next Friday 01/21/11. It would be easier to care for in the hospital and after, and since 4-6 weeks later I’ll be starting chemo and it will all come out anyway I may as well get it over with. It feels like I will be shedding skin. I think that is what this experience is here to teach me. That I need to let go of the past me and embrace the new me. That includes lifestyle changes and sense of self. I see it as a metamorphosis. Leaving my, up to now, unconscious life…running here and there, feeling responsible for that which is not my responsibility, taking on more than is realistic, and neglecting my physical and spiritual self, and instead entering into a life that is calmer, simpler, and more balanced. Taking time to enjoy each bite of food and each breath of air and enjoying just being. I read somewhere that we are human beings, not human doings. I am looking forward to the being side, however I know I will have to have some time to grieve the doing side. Then I will be able to find a comfortable balance in the middle.

Shannon has tomorrow off from work, so Lindsay will take me home this eveing. He will take me to a chiropractic appointment tomorrow at 10. From all the sitting and abdominal swelling I have a couple of vertebre that are needing to be adjusted. After that we will head over to outpatient surgery at 12:30. The porta-cath surgery will start about 2:30 and it takes about an hour. Then Shannon will bring me back home.

Thank you for sharing this journey with me. As I write this, I think of all of my friends and family, not to mention their friends and family, who are with me in spirit. The support and encouragement means so much and brings such comfort.

Hugs to you all!