Treatment Day #1 over

Once again, flexibility was key. Unfortunately, our frustration almost got the best of us. I was gruff and confrontational, ready to burst into tears. E. was silently fuming and muttering profanities, ready to throttle the next person who screwed up. What a team we were.

Here's what happened . . . a couple of days ago, we received a phone call to confirm E.'s chemotherapy appointment at noon although we had it on the calendar for 11:00. The timing of the chemotherapy was important because radiation was scheduled at 2:30...and we were told chemotherapy would take three hours. Needless to say, if chemotherapy didn't start until noon, it would overlap with the radiation appointment and something would have to give. The radiation appointment could not be moved due to their full schedule, so next I attempted to reschedule the chemotherapy appointment . . . the only other time available was at 10:00 am. That would have been fine, BUT we had a doctor appointment with the oncologist at 10:00 am. So, the next reasonable course of action would be to reschedule the doctor's appointment, which is what I attempted to do. It was then that I learned that E. supposedly was not on the calendar for any office visit and did not need to see the doctor prior to chemotherapy and radiation. Fine by us, one less thing to worry about. Everything was settled then, right? Wrong!

We arrived at chemotherapy at 10:00 am only to discover that there were no orders for E.'s chemotherapy. A quick call to the doctor's office would clear this up, right? Wrong again! Turns out, the doctor won't let you begin chemotherapy without seeing you first. And we were supposed to know that how? The doctor's office said we could just reschedule our chemotherapy for 11:00 am, but what they didn't understand is that the infusion center had a full schedule and the 11:00 am appointments were filled, as were the noon appointments now. Then they actually suggested that E. could begin chemotherapy on a different day then. Since a visit to the doctor's office was clearly a necessity, we dashed across town to meet with Dr. B. (This is not the first time we've had major miscommunication or total lack of communication from this office and both E. and I were ready to "voice" our concerns.)

Dr. B. met with us and offered obligatory apologies. He listened to E.'s heart, pounded on his back and chest a few times and declared him ready to begin chemotherapy. We had to see the doctor for THAT?!? He assured us that things would be smooth sailing from here on out. He explained the process to get the 5-FU pump through the home health service today (even though we were supposed to have received this information last week and I made no less than four phone calls seeking this information, only to be told each time that someone would be calling us back). He shipped us out the door and once again assured us that the orders would be faxed to the infusion center and would be waiting for our arrival.

Ha! We drove quicker than the fax. Still no orders. Several calls from the infusion nurses and 45 minutes later, the faxed orders finally arrived. The orders then had to be sent to the in-house pharmacy so that the IV bags could be prepared. Our ray of sunshine in this very cloudy day was "Tami S." . . . the awesome infusion nurse who worked her butt off for us and made sure everything in her control went off without a hitch. Unfortunately, she also had to be the bearer of bad news. Remember how we were told that the Cisplatin chemotherapy would take about 3 hours? Wrong again. She informed us that it would be a minimum of six hours. SIX hours! First, E. would receive approximately 2 hours of pre-hydration fluid (since chemotherapy is extremely hard on the kidneys, proper hydration is extremely important). That would be followed by about 45 minutes of "pre-meds" (steroids and nausea medication) and then he would receive the actual chemotherapy of Cisplatin for about an hour and a half. Finally, he would receive another 2 hours of post-hydration fluid. Yikes. Obviously, the perfectly timed out schedule was once again in shambles.

Thanks to the quick thinking of Angel Nurse Tami, E. received his 2 hours of pre-hydration fluid and then she quickly sent us to the other building for his radiation (we also received E.'s schedule for radiation . . . every morning, Monday through Friday, until April 10th . . . a total of 28 radiation treatments). As soon as we returned, the IV's were resumed and he was able to receive the rest of his treatment. E. watched a little tv, I worked on thank you notes and we played many, many hands of cards. The home health service arrived at about 6:00 pm and brought the pump and accessories. We received the necessary instructions and when he was eventually done with his Cisplatin, the 5-FU pump was then connected. I think it was well after 7:00 pm by the time we finally left the hospital.

E. said he was hungry for chicken pot pie and I knew we couldn't miss the opportunity to get some food into him when he essentially had an appetite. So, off to Marie Callendar's we went. And he actually ate! He even followed it up with part of a slice of sugar-free Razzleberry pie! A trip to the pharmacy yielded four prescriptions for anti-nausea medications and we finally got home about 9:30 pm. I'm sorry I didn't update everyone last night, but we were both wiped out. E. was in good spirits all day and had a great attitude (once we got things rolling, that is).

He didn't sleep great, but the PICC line, IV and 5-FU pump make things a little uncomfortable for him. He's a side sleeper, but has had to resort to sleeping on his back, which he definitely doesn't like. Hydration remains super important and he is attempting to drink as much as he can. Of course, this means lots of trips to the bathroom . . . day and night. He awoke this morning and said he felt okay, but a "little nauseous." We ran into town for his daily radiation treatment (we were in and out, and he was completed radiated in 15 to 20 minutes . . . I kid you not). Since then, he has spent the day dozing for the most part. He opens his eyes to watch a few minutes of tv but is asleep again in mere moments. He undoubtedly needs all the rest he can get.

So, if any of you are still confused about the treatment protocol (which, keep in mind, can change at any given moment), here's how it will work . . .

* Cisplatin . . . LONG chemotherapy/infusion days . . . Day #1 (March 4th) and Day #29 (April 1st)

* 5-FU . . . 24 hour drip via pump . . . Days #1-#5 (March 4th-March 8th) and Days #29-#33 (April 1st-April 5th)

* Radiation . . . quick 15-20 minute morning appointments . . . daily, Monday through Friday, until April 10th (a total of 28 radiation treatments)

Oh, and we finally did speak to an oncologist at UCDavis. He indicated that this treatment regimen was the traditional treatment for esophageal cancer, although UCDavis typically uses something different now (based on their own research). He recommended that we continue with the treatment as planned since it has already begun. He would also confer with a surgeon at UCDavis and review E.'s case with him . . . to see if the surgeon has any further recommendations about possible surgery, in the near or distant future.

Many, many thanks for the blog comments, texts, phone calls, e-mails, prayers, thoughts and warm wishes. As stoic as E. sometimes seems, I know it touches his heart as it does mine. And as for the help with the boys (babysitting, transporting, etc.) and the delicious meals . . . thank you doesn't seem like enough. The kindess of family, friends, and complete strangers continues to amaze me.

S.