Saturday, August 21, 2010

Four Weeks Later......

So much can happen in four weeks time.

School has started in my neck of the woods. Both M and C are settling in nicely to their new routines. They both like school. M loves the learning and the challenge. She is social and has a good group of friends, but is really driven by the learning. She is a natural leader and likes to be in control so the rhythm of school and the setting provides her with a great routine every day. She has her bad moments, even days, just like every other teenager, but for the most part, she loves school and is really happy to be home.

C, on the other hand, is much more social and likes being at school mostly because of the social interactions. He is intelligent, but doesn’t want to work as hard. If he can just power through something, get it over with and get back to his friends, he is happy. He is not a morning person and half the battle is getting him out the door with something in his stomach to carry him to lunchtime! I think he will have a good year though. The teachers and staff are targeting him and kids like him as leaders and encouraging them to step up. He is responding in a positive way and it is a pleasure to see him respond. He is such a generous young man and honest to a fault, I know he will do well.

So, it is nice to have everyone back in a routine. Richie and C went to Camp from Aug 2-12. Mom came to stay with me so that I could get through the Aug 3 chemo. She was a wonderful nurse and there really is nothing better than having your mama take care of you when you are feeling down. I am so glad she was able to be here for me. We had a wonderful visit, some really good talks and a regular cry every morning. I am so thankful and lucky to have such a wonderful mom.

Richie and C came home the same day Mom left. It was a great homecoming. They were road weary, but had had such a great time on the road and at Camp. I think their time together was very special. They both remarked on how nice it was to spend time with each other. They had great talks, hiking, boating, swimming, played games and ended each evening with a sauna. It was a memorable vacation.

M returned home the following day, August 13. I cannot describe how wonderful it was to touch her again. She looked just the same as she did when she left, and yet she looked completely different. She is even more self assured and confident. I am so glad to have her back home. Her Russian adventure was well worth it, but I think next summer we’ll encourage her to stay home, stay close to us, find a job and hang out with her friends.

On the cancer front, I with be getting another round of carboplatin and taxol next week. This will be my third round of this combination since July 13. I had a CTscan the week of July 19 and the results were a bit alarming. I have a new growth on my bladder. Dr. C asked us to come in to the office to discuss how to move forward. After I was given the actual results of the scan to read, I noticed a discrepancy from the CTscan results given in April. The upshot is that the April CTscan did not accurately report the growth on my bladder. Both Dr. C and I made a decision for me to take a break from chemo during this time. Had we had the correct information regarding the growth on my bladder, she would not have allowed the break and I would not have sought a break from the chemo. This is, of course, quite devastating and I am very angry. I would never, never have taken a break from the chemo if I had known there was a new tumor on my bladder. The only thing I know to do at this point is to keep moving forward.

With this new knowledge, Dr. C advised me to not travel. She thought it would be best to stay on the chemo schedule - no breaks. Richie and I decided she was right. We certainly didn’t need of repeat of July 2007 - another emergency in upstate NY. And I cancelled my trip to Idaho for river rafting. I didn’t need to be in an even more remote wilderness with a medical emergency. My chemo schedule would have also interfered with that trip, bringing me to Idaho roughly one week out of my infusion. My counts would have been low and I was just too damn nervous to put myself in that situation. The good news is that my CA125 is going down. It was 357 before the July 13 infusion and was 62 this past Tuesday. I really hate that CA125, but it gives me information and good or bad, that's what I need.

So the end of our summer didn’t really pan out like we had imagined. I am satisfied we made the right choices and I am hopeful that I will be able to do more next summer. I feel remarkably good for being back on this carbo/taxol routine. The worst days are the days right after chemo - nausea, headaches and the blahs, but the good days are really, really good.

Today, I am sitting in our living room, with M and C, watching a movie. C just made eggs and sausage for their lunch. The dogs are hoping for a few dropped crumbs and Opel, the new kitty, is watching from her perch on the couch. It is hot, hot, hot outside. Richie is in Wisconsin this weekend. I have most of my gang right where I need them and there’s not much more a gal can ask for than that. And me? I am content.

Many, many thanks for keeping us in your prayers and sending all that positive energy this way. We are also very thankful for the great meals we’ve been gifted. Those meals help more than you can imagine. Even when I feel good, I am incredibly tired. It’s hard to muster the energy to make a meal at the end of the day and your meals are very concrete help for my family. We are blessed to have all of you in our lives.

Love from all four of us,
Maggie

3 comments:

nat said...

I've had "mis-reads" of my CT scans too. It is very frustrating! Does your doctor think the tumor is operable?

I remember taxol/carbo, and how those 'good' days' were so so good! It was like being suddenly lifted from a fog. I knew, even while feeling awful, that those good days were coming - I just needed to wait for them :)

I'm glad your family is all together again! That sure is a good 'boost' to the spirit!

I'm sorry that you had to cancel your trips - but it is important to take care of yourself. Maybe you could plan another type of 'getaway' - something to look forward to, that won't be too physically taxing.

I'm so glad your CA125 is dropping (and what a drop! That is huge!!). Keep up the good work, and hang in there! :)

Dahlia said...

Maddie sounds just like her mom-intelligent, self assured, a fighter.
Love you and the family--

l'optimiste said...

Great drop in the [beastly!] CA 125. You sound so positive - I know how hard that can be some days. Good for you. Sometimes it's exhausting just to be cheerful, never mind cook...cooking sucks anyway ;) Great that peeps bring you things - so kind.
KBO sweetie
x