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.

Friday, February 17, 2006

If today were Friday the 13th, I’d start becoming superstitious! It started at about 5:15 AM with about 5 nurses running into my room saying, “She’s asleep”. I responded, “Aren’t most people at this hour?” Apparently they had the wrong room for some sort of “code”. Then around 7:45AM I was taken down to radiology for the barium imaging of my sorry intestine. After swallowing 8 oz of barium they wanted to start with live imaging using something called “fizzies” (sodium bicarbonate crystals). Well my mouth was very dry and the first two ounces of this granular powder which they had told me to swallow (I have no clue how anyone could) stuck to every surface of my mouth. When activated with the 1 ounce of water, my mouth literally exploded, shooting out this white stuff like a blast from Cheney’s shotgun. After they recovered and cleaned up from that, it was decided to try once more with half as much “fizzies”. This time I was instructed to throw it to the back of my throat and then drink the water. I did so dutifully, with the result that the stuff “exploded” somewhere in my esophagus generating an equal and opposite force of vomiting. It was a great show, lasting for about 5 min, to the point where I was about ready to pass out (I was standing in front of an imaging apparatus). Finally, they let me “rest” and ingest the remaining 16 oz of super thick unflavored barium. I have no idea how I did it. Let’s say it was an ordeal executed only by my recall of childhood memories of “choo choo choo choo cha” or “take just one more bite for Mommy”. Yuk! Then began the imaging which was done every 10 or 20 min over the next 2 hrs. The conclusion is that my small intestine is partially occluded at multiple loci – not really surprising considering my 14 month ascites and millions of tumor cells trying to devise nasty tricks. This lovely episode was followed, after about a 45 min break in my home away from home (i.e. hospital room), by the installation of a dual “Pick” line in my left arm. It was very interesting to watch the procedure on the monitor because it showed the live imaging of the threading of the catheter up to my arm pit and then down into ??? Not a difficult procedure, but I now have two unwieldy “dangles” hanging from the inside of my left arm. This now leaves me with three accessible ports – one for TPN, one for blood draws, and one for chemo. I am a true bionic woman – just plug me in.

The plan is to try to get me out of here Sunday or Monday at the latest. I will still have to stay at home until the TPN can be weaned from its present 24 hr schedule to a more “liveable” 12-14 hr overnight cycle. I’m coping with all of this rather well at the moment and waiting to feel the benefits of the infusion of some calories and other goodies into my depleted system. I can still eat a little with this if I feel like doing so, which I doubt. But who knows?

The ditch was a bit deeper than I anticipated. It’s now Thursday and I’m still in Georgetown University Hospital. I checked into the ER on Monday morning and after extensive CT scanning which indicated a partial block in the small intestine, was admitted to my now “home away from home” in the Oncology unit. I have met wonderful nurses and aides and been most impressed with both the skill and the upbeat personalities of the staff. Though every day I dream of checking out, unfortunately I still cannot keep even liquid “food” down. So tonight I start on “total parenteral nutrition” or TPN. Tomorrow they will install another IV line in my arm so that together with my “third nipple” mediport I will look like a bionic woman! I’m going through lots of tests trying to determine the site(s) of the block. But a strong likelihood is that it will be determined to be “diffuse” and then it will have to be hit with some tough chemo. So there could be some rough months ahead, but I seem to be able to keep an upbeat attitude. I’ve had one heck of a fabulous ride the past 2 years and I think I can muster the strength to weather this storm.

Hospital life does have its memorable aspects. I have my Ipod, computer, and cell phone plugged in plus the nurse call button, the room phone for incoming calls, and of course I’m hooked to an IV line. I never seem to be able to get out of bed without causing some kind of disaster no matter much I plan. Last night around 2AM, while groping for an ice chip for my parched mouth, I dumped an entire pitcher of ice water all over myself in bed. This afternoon I knocked over a small container of cranberry juice to swamp my Ipod, cell phone and computer in sticky red juice. Then in the bathroom I have 3 times (don’t seem to learn quickly) dunked my nightgown into the urine collection pot. Oh such fun! Fortunately it seems to entertain me and challenge me! I think I must be nuts.

Sunday, February 12, 2006

Survived! I am presently on my way home from San Diego transporting my mind into a otherworldly state by listening to my favorite Rutter and Fauré Requiems on my Ipod. If I thought my visit to Dallas was difficult, I clearly hadn’t yet been tested. This past week has been extremely difficult for me – more difficult that I ever imagined. I had been looking forward this week with excitement and anticipation for almost 2 years – a Special AACR meeting on TGF-b and Cancer which I organized with two of my colleagues. These meetings are such highlights for me – scientific “family reunions” and very stimulating. In its initial planning phases, I dared to dream that I would actually still be alive in February 2006, but the closer the date, the more excited I got about what would clearly be an exceptional conference, bringing together many of my dearest scientific colleagues, worldwide. Despite my stomach problems of the previous week and some xrays on Friday which indicated no visible stomach obstruction, I was confident that I would be pumped full of adrenalin and have a great week. Unfortunately my stomach problems persisted making it difficult to keep any food, even “Ensure” down. On the second night of the conference I agreed to go out to dinner – that too was a mistake. I sat starving while enviously watching my colleagues devour what seemed to me to be enormous quantities of delectable food when I could manage to ingest only two or three pieces of my tuna tartar appetizer. That was my last attempt at dinner for the week – or for any meal except breakfast in which I managed to down some cereal each morning. I was so low on energy that I spent each “break” from the lectures napping in my room in an attempt to refuel for the next session. The low point was Friday when I felt unable to eat anything and had my presentation in the afternoon. Amazing even myself, I pulled it off, despite having my “fuel” indicator on “zero”. I carried a plastic bag in my pocket “just in case”. But somehow the act of presenting my science separates my mind and body making me completely oblivious to any physical ailments. It is so important to me to try to go on with my life as if I never had this disease, but this was a real challenge. That night, again unable to eat anything and with a stomach that sounded like it contained a burbling witches brew, I finally took an Ambien after struggling 2 hrs trying to get comfortable in bed. That gave me 10 hrs of sleep and started the mending process. Saturday I started feeling a little better and found myself able to eat a little smoked salmon at the closing banquet. That and the goodbyes to my friends and colleagues buoyed me up to the point, where today I am feeling like I’m on my way back to better times. I had a further fright last night in that many of the eastcoast flights were cancelled due to a late winter snowstorm (8” in Washington), but thankfully, United did fly and am now on a magic carpet to Bob, Kiara, and the comforts of home. Dr. Marshall wants me in the ER tomorrow morning and we’ll see where we go from there. Meanwhile, I hope that this is just another bump in the road and that I will bounce back again. I heard an aphorism on the radio the other day: the difference between a ditch and a grave is the depth! I think I’ve run into a ditch that hopefully is not so deep that I can’t extricate myself!

Wednesday, February 01, 2006

I finally looked up the words to my favorite choral piece by John Rutter. The words are very simple, but powerful.

A Gaelic Blessing
Deep peace of the running wave to you
Deep peace of the flowing air to you
Deep peace of the quiet earth to you
Deep peace of the shining stars to you
Deep peace of the gentle night to you
Moon and stars pour their beaming light on you
Deep peace of Christ, the light of the world, to you

So I’ve hit a few more bumps in the road again. On the up side, Bob and I had a “party” this weekend stripping the wallpaper from our bedroom, pulling, soaking, scraping and making a royal mess. It seems crazy, but it gave me such a high. I’ve always been a big “do-it-yourselfer”, but recently with my reduced energy it seems that everything that I suggest that we do, Bob tells me that we should hire somebody to do it. Well I happen to love wallpapering and just thinking about whether or not someone else would do it up to my standards, would keep me up all night. So I invited Bob to my party and we had great fun. It made me feel whole! Guess what our next party’s going to be about!

On the down side, for the past week I’ve been plagued with intestinal cramps lasting for 30 min to 3 hrs after every dinner. They always seem to dissipate before I go to bed. Unfortunately on Monday, as I was in the airport waiting to board my plane to Dallas for the Komen Foundation Advisory Board meeting, I again got serious cramps which lasted the rest of the day. At the dinner that night I could eat little and finally excused myself to go to my room and vomit and vomit – where the quantities of liquid came from I have no idea. After that I felt good and slept for 7 hrs before waking up to vomit again. Then too soon it was morning and I knew that I had to last the entire day of the meeting. I was afraid to eat anything for fear that I would induce another “episode”. It was a VERY long day before I finally arrived home at 11PM. I tried to find something to eat in the Dallas airport, but try finding something for a tender stomach in Texas – chili dogs, tacos, burritos, whatever. Don’t think they ever heard of TCBY yogurt down in those parts. So I drank some Dr. Pepper and arrived home starved. Now I’m trying to rehydrate and get some energy back. I’ll see Dr. Marshall on Friday and we’ll to figure out what’s causing this.

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