Today we had a follow up appointment with Ryan's surgeon. Ryan is healing well and the surgeon is pleased with the progress we have made with his food intake. You may remember that he was only eating about 12-15 ounces each day. He is now eating about 18-21 1/2 ounces each day. The goal is to get him to a minimum of 45 ounces each day. So, we're almost half way there. We're going to continue working on it for the next 2 weeks. We'll try increasing a 1/2 ounce every few days.
If within 2 weeks if we're not close to our goal, then we'll need to do a feeding pump to do continuous feeds overnight. We're hoping to avoid the feeding pump; however, I'm not entirely opposed to it if that's the only way we can get his caloric and nutritional intake where it should be. I'll keep you posted on how things are going.
If you're in the San Antonio area and you're ever in need of a good pediatric surgeon ... I hope you never need one, but if you do ... you really should try, Dr. Charles Baldwin. I appreciate him so much. He's extremely kind and explains everything in great detail. I love it when doctors explain everything to me using real medical terms, but also explaining it in lay terms. He's also just a very kind man and his office staff is so considerate. He's a good man.
Tonight the Young Women of the Sonterra Ward (our church's local congregation) came over to my house to help wrap presents for Brighton children. The Brighton Center is having a Christmas party for all of their kiddos and their families. There were lots and lots of presents to wrap.The presents were supposed to be delivered to my house around 4 or 5 pm today. I was a little concerned when at 7 pm they hadn't arrived. I finally called the delivery lady and she was really glad I had. She had left the directions and my phone number at her office. She had been driving around for a while ... even on my street, and she had finally given up and decided to head back to the office. So, she arrived just after the girls arrived. It worked out great because all the young women just pitched in to help carry all the gifts inside.We moved all the furniture to the walls in both the living/dining room, and the family room. And, in record time, more than 100 gifts were wrapped.
Thanks, ladies, for all your help! I hope you all have a very merry Christmas! I know you have brightened mine and many little children's Christmas season.
This Cancer ride has been quite the roller coaster. First it's a panic, then no big deal, then a panic, then no big deal, then a huge panic, and now we're back to it's going to be okay. I like the "it's going to be okay" portion of the ride.
I went to see the Oncologist today. He discussed my medical case with his colleagues, and did some research on this unique presentation of Cancer that I have. They found research where some patients with Marginal Zone B-Cell Non Hodgkins Lymphoma have been successfully treated with a drug called Rituximab AND, most of those patients have been able to stay in remission for 5-7 years. (The 7 year one is still in remission, but it's only been 7 years since the patient was treated.)
This is not a cure for the Cancer; however, it is better than killing off everything in my body and then hoping that it rebuilds. Even if I have a recurrence in 5-7 years, I will still be young enough (and hopefully healthy enough) to receive more aggressive treatment then.
I suspect most people who read my blog already believe in prayer. I hope you do. I do. I believe this change in plans is a direct result of many, many prayers given by me and all of my faithful friends. Thank you! Thank you all for the love and support! I can't imagine how scary a cancer journey would be without amazing friends. Love you all!
Oh, yah, (how do you spell yah? is it yeah or ya or yay ... you know like Oh, i remember now...) Anyway ... the uterine ablation. Have I mentioned how lucky I am to have a great doctor? Before the procedure Dr. Shows came in and talked to me for a few minutes. She talks to me like a friend, not just another patient that she needs to check off her list. So, we chatted for a few minutes. I remember her and the nurse talking about their shoes, and she asked me if I wanted her to call Dwight. But, I don't remember anything after that until I woke up after the procedure.
I was really crampy after words ... kind of like having an early on contraction just non-stop. But, thankfully, the pain meds worked and tonight my pain med is wearing off and I just feel a little crampy. I'm hopeful that tomorrow I'll feel pretty normal again.
If you happen to read this, Dr. Shows ... Thank you! I really do appreciate you!
This post is being shared in an effort to share this journey with honesty. I hope you are reading this because you are my friend and not because you are searching blogs for some ray of hope about Lymphoma. If the latter is true of you, please be sure to read more than just this single blog entry.
Last night as I was preparing stuff for today's outpatient procedure, I realized that I had failed to get the ordered blood work done last week. I was supposed to do it 1-2 days before today's uterine ablation and somehow I forgot.
I'd like to use the excuse that I was so busy or stressed, but really. I was sitting in a hospital room with nothing to do but read, knit, and hang out with Ryan. I could have taken 10 minutes to walk down to the 1st floor to do the blood work. Really. I hate it when I don't stay on top of stuff. I'm normally very, very good at details and it seems lately I don't do details well at all. This frustrates me.
If you know me well, you know I tend to be just a little uptight and a little bit of a perfectionist. I try really, really hard to pretend that I'm not. My children think I have a touch of OCD ... you know, "Obsessive Compulsive Disorder." I really don't. I just have a lot of high expectations. Not so much of you, but of me. So, when I forget things or fail to do things that I'm supposed to do, I feel very frustrated by it.
This morning, the frustration of my failure, and I suppose the anxiety of another crazy busy week of dr's appointments and the unknown really got to me. I called my ob/gyn's office to see if we could still do the procedure today. Part of me was hoping that they'd say we needed to reschedule, the other part of me was nervous about trying to fit in an appointment on any other given day. After the sweetest nurse was so understanding and said it would be no problem to go ahead and do it today, I hung up the phone feeling mixed emotions. Then I sat and cried as my children asked me about juice. (Really? Two refrigerators, a pantry, and a food storage with plenty of juice. Pick a juice and have some.)
I cried because I don't want to be poked any more. I cried because this really is only the beginning of more pokes and I don't see an end in sight. I cried because "this gift" has never really felt like a gift. Why is our body a gift to us? I've never understood that idea? Don't get me wrong. I'm thankful for all the things that my body allows me to do. But, I also feel frustrated by all of it's shortcomings (pun intended.)
After a couple of minutes, I realized that I had too much to do and am too blessed to feel sorry for myself. So, I picked myself up and got busy. I did fairly well until I realized that the boys' bathroom was not only full of dirty clothes (even though I had asked them to put their dirty clothes in the laundry at least 3 times), and that there was dried vomit on the toilet still from last week's fight with the flu. REALLY? Dried puke. That's disgusting. Why hasn't anyone done their chores? I called the boys in to remind them that they had been asked 3 times and shouldn't have to be asked ever to do their daily chores. But, what would normally be a calm tone with me stating the expectations and declaring a fair consequence became me raising my voice at the boys and threatening to throw away everything they own. And, then crying.
I immediately went to my room recognizing that I was not handling things well. I said a prayer and pleaded for peace ... and forgiveness. The boys hadn't done what they were expected to do, but they too deserve mercy and justice, not an irrational mom. Before the end of my prayer, my friend showed up to take Ryan for the morning and to drop me off at the hospital.
I asked my friend, "Why is it that I can handle big challenges like Cancer and a Special Needs Child, but really not-so-important* stuff can set me off?" My friend in her wisdom explained that it's probably because I'm reaching to control something. So much of my life is not in my control and how the house looks and how the boys do their daily chores is something that I might be able to control. Her answer felt right.
I've thought about that all day today...
My little guy, Ryan, truly feels like a gift from God. I've loved every baby and feel the heavens near with every little baby that I've ever held. But, with Ryan ... 16 months after his birth I still feel that I am in the presence of a great little spirit and I frequently still feel the heavens near. I'm honored to be his Mother.
The Cancer is a much harder task, but only because the medical stuff scares me a bit. I do think it's an opportunity to become a better person. To be refined. Purified.
The every day routines, the every day challenges of teaching and raising 6 amazing children ... maybe I need to see those as the gifts they really are also.
Thankfully, tomorrow promises to provide lots of opportunities.
Tomorrow also brings another appointment with the Oncologist and hopefully a treatment plan.
Someday I promise this blog will not be all about me.
*Not-so-important stuff: While I don't think the house being spotless is the most important thing, I do believe in teaching children to work and to obey. I think chores are a great way to do it. I believe that if we teach children to work and to obey then they will grow up to be better citizens and better disciples of Christ. And, I believe it will bless their lives.
I apologize for the delay in getting an update posted. I am struggling to stay on top of everything and being at the hospital without internet access for 5 days did not help.
First, a huge THANK YOU to the 30+ people who showed up at the new house and left it sparkling clean and fresh ready for move in. And, a special THANK YOU to the ladies who sent the email, made the calls, and organized the event. I don't think I have any words that can adequately express what a sweet feeling it was to leave the hospital, go to the new house, and realize that you all had eliminated a couple of days worth of work for me. You did far more than I would have ever asked of any of you. Thank you so much!
I stand amazed that you all showed up with such notice at the busiest time of the year. I know you all have busy lives, and many of you had family coming or already here visiting. Really ... thank you!
Ryan's surgery went well. He lost less than a 1/2 teaspoon of blood and they did not have to manipulate the intestines at all, which made the healing time go faster. He took an extra day of clear liquids before he was passing things out of his stomach enough to have formula. He is now on formula, 3-4 ounces every 3-4 hours around the clock. (It's kind of like having a newborn baby again.) We are encouraging him to drink all that he will from his bottle, and then topping off his tummy through the feeding tube.
As for me, I didn't have a chance to update you on last week's appointment with the new Oncologist. He was great! Not only does he seem brilliant and experienced, but he has an adorable accent. Hehehe. He thinks the best approach to my cancer is to do a very aggressive treatment in hopes of getting rid of the cancer completely. I am meeting with him again tomorrow to find out if I "qualify" for a stem cell transplant. I'll explain more about it after I get home tomorrow and have a more definite plan.
I hope to have a definite treatment plan at the end of the appointment tomorrow. I feel like I'm just spinning my wheels now. Lots of appointments, but no progress.
I spent some time at the hospital with a lovely little booklet called, "Chemotherapy and You." It's not a good read. I hope you never feel the need to read it. I'm now a little nervous (read a lot nervous) and wishing that I could just wake up to find this Cancer thing has all been a bad dream. In fact, I think I'll end now. I have some things I need to get done and can't sit here feeling sorry for myself. Besides, how can I feel sorry for myself when I am so blessed! So, note to self: "Be of Good Cheer!"