Friday, May 26, 2006

Anita’s journey ended peacefully at home on May 26, 2006.

Wednesday, May 10, 2006

I'm quickly approaching the end of my journey. Cozumel was a miracle, a dream, a week of love and happiness and family togetherness and a long-planned celebration of my two-year survival.

However the well-being I experienced in Cozumel was an anomaly in the spectrum of time since San Diego in early February. I've been rapidly losing ground to this disease and I've now come home to end my life's journey in peace.

Love to all of you, and no regrets.


Monday, April 10, 2006

Immediately after stepping out of the plane in which I had nearly frozen to death despite American Airlines providing me with 3 wonderfully thick blankets, I was enveloped in brilliant sunshine, and more importantly, warmth which penetrated all the way to my bones and brought my brain to life. I had not felt so comfortable and so alive in the past 2 months. Overall, the entire trip was the stuff of dreams. The tranquility of our villa Cini Kin Na (Mayan for “house where the sun sets on the water”) and the boundless love and strength of family bonds were truly restorative and healing. Each day there I grew stronger. There was continuous activity with various people snorkeling or scuba diving off our private 280’ shoreline or as the kids would invent crazy new games in the pool. The villa itself was spectacular and one with the outdoors – all doors and all rooms were open to the outdoors with the weather low humidity, continuous breezes with highs in the 80’s and lows around 70. The meals cooked by Miguel and Lorena were wonderful and always of sufficient quantity that we could eat the left-overs for lunch the next day (they provided breakfast and dinner with all of us sitting around one huge table). Staying in Cini Kin Na was so seductive that none of us ever ventured out to shopping – even though it was an easy walking distance away.

With all of Bob’s extensive planning, all went smoothly with the medical side and I got my TPN every night plus a few saline infusions to counter the dehydration. In 5 days I went from hardly being able to navigate the steps down and up from the sea to rather confidently doing our multiple trips to get my feet bathed in the turquoise blue water.

All in all, the physical comfort of finally being warm helped restore me mentally and I am slowly regaining strength in my legs. Life is again very much worth living and I find myself having an unfounded optimism about the future.

Monday, March 27, 2006

I know it’s been a while since I’ve written, but, to be honest, I have had neither the will nor the energy to write. Each day since I got out of the hospital for the second time, I would go to bed believing that the next day would be a better day, and each day I would feel worse. I have been unable to think or to even navigate from here to there without tremendous effort. Many days I could not even muster up the energy to look at my emails. The first 3 weeks at home started with a knock-out punch from the chemo and were followed by endless days of continuous nausea and vomiting (since it was the only way to empty my blocked stomach). Finally I had to tell Dr. Marshall that I had overestimated my ability to cope with the vomiting and would agree to the insertion of the percutaneous endoscopic gastrostomy (PEG) tube to drain my stomach. The good side of this is that it immediately relieved the nausea and the pressure to vomit and even allowed me the intensely pleasurable ability to drink liquids (they simply run straight out the drain tube). That gave me more of a life, but the pain around the tube insertion site was so strong that it was very uncomfortable to walk around or to move much. Then 5 days after the insertion of the tube, problems started to occur with leakage of ascites around the insertion site. We dealt with this drainage with increasingly innovative approaches starting from using hand towels covered by plastic and held to me by ace bandages to using heavy duty Kotex pads (yes, Bob was embarrassed to death to buy them at the grocery store). The latter was actually a much improved approach because they have a waterproof backing. To complicate matters further, I started developing a fever associated with each infusion of the TPN and lasting about 4 hrs after the end of the infusion (so about 16 hrs/day). Clearly this did not help my energy level and became a significant cause for concern. Eventually due to increasing pressures from my lab members, I got blood cultures done at Georgetown. One culture of the PICK line was positive. So the next day I had to check back into the ER and the hospital to be loaded up to my eyeballs with IV antibiotics. The PICK line was taken out. Then good things started to happen. A wound care and ostomy nurse found me a special two-compartment bag which surrounds my gastromy site and then allows the stomach contents and ascites to mix into a common draining Foley bag. This relieved the discomfort of having to continuously change soaked pads and now keeps my skin dry. Then the really good thing happened – I was given 2 units of blood on Friday and emerged a new person. Amazingly I now have noticeable brain function. I am able to get up in the middle of the night and patiently untangle my IPod cords, my IV, the cord to the heating pad, and of course, the PEG drain. You may think that this is silly, but the previous nights such a task would simply have been impossible. I am now walking the halls, talking, doing things that I think about rather than simply “wanting” to do them but never carrying through. Whereas two days ago I thought that Cozumel was an unreachable goal, my upbeat team of doctors all think it is attainable and are doing everything possible to get me there. Most importantly, I might now even be able to enjoy the experience!
So present plans are to insert a new PICK line tomorrow, get me on oral antibiotics, and schedule my chemo ASAP. Although it is a tough road, I think I can handle the chemo much better in my present improved state. Then we will likely reschedule our departure to Cozumel for Tuesday (instead of the planned Saturday) and still be able to enjoy some wonderful time with family. This requires that I hit no more major bumps in the road the next 8 days! Then we will truly be able to celebrate my 2 year survival in the way we had intended.
Lots of people have helped me get to this point. Bob has acquired excellent nursing skills, setting up all the TPN and saline infusions, and I have received unending important advice from my lab members. Bob’s Mom has been with us the past 10 days buoying up both Bob’s and my spirits, and my sister is always there for me. I wouldn’t be here without their support and feel totally blessed. Finally I think that I can say, “ONWARD”.

Monday, March 06, 2006

One thing that I’m learning the hard way is that progress does not seem to be steady but rather characterized by some small advances and retreats that overall constitute “progress”. My first week out of the brink was quite disappointing. After surviving two days of devastating effects from the chemo (now my third time on this regimen, and somehow the memories of the previous times tend to make it even worse), I then survived 2 more days in terrible discomfort from the ascites, before having it tapped on Thursday. Of course that too is at first totally devasting to my system. This brought me to Saturday, my birthday, and a very special visit by both of my sons and one of my grandsons, Mikey. However, the day was too emotional for me, causing my poor maligned stomach to become hyperactive, keeping me in rather constant distress. I had a special visit from about 15 members of my lab bringing tons of balloons and cards. I wouldn’t have traded it for anything in the world, but it too threw into a spasm of vomiting. Just a little too much of a day for me. The encouraging news is that Sunday I felt so much better and was able to enjoy my boys to the fullest. Today again is a little of a backslide, but that seems to be my course at present.

I spoke to each of my grandchildren on the phone on my birthday. Here is one conversation I just have to relate, because I’m still laughing about it. Of course Max, Alyson, and Morgan wished me Happy Birthday and Morgan (9) and I talked long about this disease and her wishes for me to conquer it, but the funniest was Matthew (5) who got directly to the point, ‘Nana, do you puke a lot? Has Mikey SEEN you puke?” At this point I passed the phone to Mikey and this was his end of the conversation, “Oh, yeah Nana pukes all the time, but the coolest thing is that she eats through her arm! I’ve seen Papa do it!” From the mouths of babes…. Mikey was also overwhelmed by the international composition of the members of my lab and proceeded to ask everyone where they were from. Then he would run to the globe and come back with statements like, “wow! China is a long way from Michigan!” The next day I made a list for him of all of the countries represented by the lab. He looked and them and said, “Nana, are any of these in Michigan?”

Wednesday, March 01, 2006

Unfortunately, my time out of my white pen was very limited. Thirty-six hrs after checking out, I was again admitted to the ER and then to the Oncology floor with intense pains that I simply could not handle. This stay lasted from Tues through Sunday, the total experience leaving me completely wasted. Happily for me, my sister was able to take time off from school and spend Thursday and Friday with me. That was such a treat. On Thursday, I was given what I call “kick-ass” chemo – oxaliplatin, eiprubicin, 48-hr 5-FU pump, and avastin. Indeed, it has brought me to my knees. Let’s hope it is doing something for the tumor cells. I am trying my best to regain my strength, but it is coming along VERY slowly.

Here’s an interesting anecdote from my last hospital stay:
Quest for Olympic Gold! Picking up from the grit and determination of the Olympic women althletes, I finally decided to get a nasogastric (NG) tube installed to try to relieve the pain and pressure in my stomach, and go for my own "gold medal". Dr. “ROOC” (resident oncologist on call) started the installation around 1 AM (right after the completion of my chemo infusions). The initial placement had to be checked by an x-ray, and was shown to be about 2 inches short of its goal. At 2:30 Dr. “ROOC” shoved the tube in 2 inches further, and so began the fun. Like striking oil in Texas, we had a gusher. Dr. “ROOC” stood there in amazement as vile yellow liquid (Olympic Gold) spewed forth all over me, my nightgown, and my bedding. He immediately pushed the call button and said, “Nurse, I need a clamp quickly.” In rushed a nurse, who very politely and calmly showed him how they do it with the stopper provided on the tube! This nurse then proceeded with the clean-up. It was nearly 4:30 AM before the final x-ray results were in and I was hooked up to suction! The nurses laughed about this for the rest of the short night. Unfortunately for me, the timing of the “end of my evening” coincided with the 4:30 AM initiation of the morning hospital rituals involving checking that my signs were still “vital”, my daily blood draws, etc. So now, exhausted, I have my “Bronze” Medal 5-FU line in my Mediport, the “Silver” Medal TPN running into one of my Pick lines, and the Olympic “Gold” from my nose. It is quite a sight, and Bob took a picture of me in all my glory with an American flag sticker pasted to my nose in true patriotic spirit.

This whole incident reminded me so much of a story from Karl’s residency days. When Karl was resident on call in shock trauma, he treated a girl who had been helicoptered in with multiple fractures. After the bones had been set, he found himself in her hospital room, having been handed a bag of pullies and ropes to set up traction, a procedure normally handled by the nurses. With great effort, and under the watchful eyes of the parents, he began setting up the traction apparatus. Unfortunately while attempting to cut the cord with his super-scissors, he cut his hand instead, dripping blood all over the patient. After a trip to the emergency room for stitches, he resumed his work. Certain things are simply better done by the nurses!

Tuesday, February 21, 2006

This is going to be a rather mundane report because I’m not up to producing anything more. I got home from the hospital at last yesterday afternoon. I’m still unable to keep much of anything down and yesterday even discussing my next chemo (on Friday) with Dr. Marshall was sufficient to trigger my stomach into wild convulsions (or should I say “expulsions”). I have a fabulous, dynamic home nurse who has taught Bob and me how to set up the TPN (I’m now on a 12 hr infusion per day which gives me 12 hr freedom). Bob has surprisingly become good at this himself and enjoys the process because he has so much “garbage” that he can throw away each time. So we’re slowly adapting to the present situation. I still live with the hope that each tomorrow will be better than today.

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