Fun with Blood Clots --- 05/09/09

First, let me apologize for such a long break between Blog updates. I have been trying desperately to get Robin to do the next entry. I tried EVERYTHING. It isn't going to happen! So I guess you are stuck with my second-hand relating of the "Trials of Robin."

The last entry was in October, right after Robin's birthday (which is 9/30, by the way). Since then, Robin has made little progress in her rehabilitation. She spends most of her time in a hospital-type bed or a wheelchair. She is capable of transferring herself, and she can walk short distances (like from the house to the car, or from bed to bathroom), but she requires both a walker and an attendant. We have hired a lady, Connie, who stays with Robin during most of the day while I am at work. Connie is very nice and takes good care of Robin and they seem to have become friends, as well. Robin's eyesight has improved somewhat, but it is still very poor. She requires a magnifying glass to read, and it tires her out to read for any length of time. She got a new prescription and new glasses in January, but they did not help a bit.

Robin had two scans done since October, and neither one showed any advance of her cancer. Her last scan was about four weeks ago and, besides showing no cancer growth, it indicated that her ribs were healing from the back surgery. In October, Robin restarted taking chemo every three weeks. The treatment she has been getting is "CMF," a cocktail of three very old chemo drugs: Cytoxan, Methotrexate, 5FU (Fluorouracil). It is combined with Zometa (stuff that helps bones to resist cancer damage) every other chemo treatment. The next day after chemo, she always receives a shot of Neulasta to boost her white blood cell count. In general, this chemo regimen has been better tolerated than the one she was on before her back surgery.

Normally, she receives chemo on Tuesday, she gets "chemo-sickness" starting about Thursday. By Saturday, the worst part is over, and by the middle of the next week, Robin is just about normal again. Of course, it took us months of experimentation, trying combinations of anti-nausea drugs, and daily life changes, to get these effects to this point. Our last big trial was recurring nausea, about every three or four days. Robin would puke for a day, not even able to keep down her nausea medications. Needless to say, I had to put her meds where they wouldn't come back up. Then she would recover for a day, have one or two good days, then, the cycle would start again. Puke day, recover day, good day, good day, repeat. Eventually, with help from her doctor, we figured out a strategy that broke the cycle. Until her recent hospitalization, Robin had been nearly "puke-free."

Speaking of hospitalization, I took Robin for her standard pre-chemo Doctor's appointment on Monday, May 4th, at her office in Texas City, where she now keeps most of her office hours. Robin showed the doctor her left leg, which had been swollen on-and-off for a couple of weeks, but it seemed much worse that day, and the doctor decided she should be checked into the hospital to see if it was a blood clot. There were no open rooms in the hospitals near home, so we ended up in the hospital in Texas City at about 4:30 PM. In retrospect, we should have gone to the emergency room at a hospital closer to home.

Robin's first night in the hospital was a nightmare. The technician that took blood for testing had to poke three times, digging around until she hit blood, losing it, digging some more. This went on until she got three vials of blood. Then they wanted to put in an IV. We asked if they could use her Port (an implanted device for people who get regular infusions like chemo). They told us they didn't have anyone who knew how to access the port, so they tried to poke around for an IV. After several unsuccessful attempts, they brought in a male nurse, a "pro" who was sure to get it! He poked and prodded until Robin's hand looked like a pin cushion. We asked again about using her port, and he said he knew how to use it. Well, to make a long story short, after an hour or so and three attempts, we learned that he did not, and to make matters worse, he was not using gloves for most of the procedure. He THOUGHT he had a good connection, and left thinking all was well, but when the nurse tried to give Robin her pain meds, she could not push them in. By this time, we had been there for several hours, and the shift had changed. The charge nurse from the new shift REALLY knew how to access a port, and connected Robin in minutes, all using sterile procedures and gloves! Robin finally got her pain medications about 9:00 PM, over nine hours after her last dose at home. Shortly after the pain meds, they finally got her started on blood thinner, Lovenox. This medication is delivered by subcutaneous injection once every 12 hours. After her first two treatments, the swelling in Robin's left leg was subsiding, but it was still noticeably larger than her right, and it did not hurt anymore. By Thursday, her leg was almost normal.

One of the unfortunate parts about going to the hospital is that THEY must control everything, and it ALL must be ordered by the doctor. This totally disrupted the routines that were keeping Robin from nausea and keeping her "regular." When I arrived Tuesday morning, Robin still had not received any of her normal medications except for the blood thinner, insulin, and her pain medications. This meant that she had not taken her anti-nausea meds for over 24 hours, so just before I had arrived, Robin started throwing up, and it continued the whole time she was there. Once her meds were on schedule, she was starting to feel better. However, they were far too conservative with the stool softeners and laxatives, so food had nowhere to go but up, … and it did.

I was finally able to take Robin home on Friday, May 8th. We started her back on her regular schedule, and will hopefully have her past the nausea problems soon. It usually takes about 24 hours. Robin is scheduled to have chemo on Tuesday. This has shifted her schedule by a week. We were planning to have a small anniversary celebration on May 16th (our 33rd anniversary), but it will need to be delayed a week for the chemo sickness. Oh well, that's life!

There were many folks who helped to take the edge off of this difficult time in the hospital. I could never name them all, partly because many of you called or visited while I was away. On Tuesday, May 5th, Eileen, Raoul, and Alexis brought Cinco de Mayo to Robin's hospital room, including fajitas, guacamole, and other necessities. We were only missing a Mariachi Band! We laughed so loud, I thought they would have thrown us out, but the nurses were pretty cool about it. On Wednesday, Mary and Beverly came to visit Robin, and on Thursday, John and Marie stopped in. Robin also had phone calls that came from coast to coast. Philadelphia, North Carolina, Florida, Tennessee, Louisiana, California, and all points in-between (including many from Texas). Robin thought she would be bored and forced to watch daytime TV, but through the efforts of many friends and family, she was saved from that horrible fate. She was TOTALLY amazed by the folks who called, and she couldn't stop talking about it. She was SO happy!!! Thank you to all of you! Thanks also to those who prayed for Robin and sent good thoughts her way. Please keep up the good work. It is obviously working!!!

I also want to give our thanks to many folks who have expressed their love and support for Robin during the last months, even though I have not been as communicative as I should. Robin has been receiving cards and notes that have helped to keep her spirits high in spite of her situation. Two people deserve special thanks. One is my mother's friend, Pat, who sends Robin a card every week. They always get a smile. Another is our friend, Margie, from college. Just before Lent started, Margie located us through FaceBook, and she decided to send Robin something every day for Lent. It was such a wonderful blessing to Robin, and she looked forward to each little bit of insight from Margie. Some people call from time to time, and Robin's mother and father call almost every day. They all help to keep her spirits up.

Our son, John just arrived this afternoon, staying for Mother's Day. This should help Robin's recovery from the hospital stay. John has exams next week, but he'll be coming back home next weekend for the summer.

Love from us all,

            God Bless You All (even Terry),

                  Larry, Robin, and John