Ups and Downs

Life is full of ups and downs, and sometimes they don't nicely alternate for balance. Seems like I've been getting a pile up of downs lately, but then again, it's our nature to focus on the bad news, right? As for the ups, a few mentionables. Bekah, who's blog is listed to the left, has reached her "magic" number of cells harvested to begin her stem cell transplant. It was a long, hard road for her but she did it! She wasn't confident for a time there and began to look at other options to a SCT. She endured and I am so proud of her.

I am snowboarding again. I've been three times now since my last ride in December. Two Sundays ago, Dennis and his brother Ted called it "Vintage Day" because they brought 19 year old boards to ride. These are boards each of them owned early in their snowboarding careers, and they hadn't been on one since. They rode those old girls surprisingly well. Dennis and Ted were surprised by how well the old technology actually rode. I even got on one, having never ridden on something that old and weird looking, and had no problems. A snowboard is a snowboard is a snowboard. They'd shoot me for saying that you know.


Dennis and Ted with their very old gear

Me on a 1989 Burton.(click on it for a better view)

A neutral is that I've started seeing a physical therapist for my lymphedema. I've had two sessions with her and it seems the lymphadema is the tip of the iceberg as we discovered there is actually more damage from the radiation. The lymphedema is minute and hardly noticeable, but the scar tissue in my chest, neck, and back is extensive. I constantly feel like I am carrying the weight of the world in my neck and shoulders, even when I'm not stressed. She massages my arm, armpit, port scar, neck and shoulders. Last session we ventured into acupuncture a little as she put four needles in my legs for general immune system function. I only go once a week because that is what I can afford, but I feel like I could use it more often. And, yes, I can perform some exercises on my arm, armpit, and chest myself, but I'm so bad about it. Ooo, I can feel your unsympathetic thoughts already.

Now, for the downs. Remember back in January I raved about the woman who was walking dogs for me while I went through radiation/chemo? I went so far as to call her a saint. Well, I'm calling her something else these days. She has decided to leave me and start a competing business for the "sake of her family", she says. She wasn't earning enough money working for me, although she never told me this any of the times I asked. I liked her work ethic so much I would have paid her more if she had told me she was hurting. If she had said she was going to landscape, or waitress, or ANYTHING else to earn more money it would have settled better with me. I am kicking myself for not listening to the little voice in my head that warned me to have her sign a non-compete agreement in the beginning. ARRGH! It's a very competitive market up here for pet sitting because so many people are jumping into it. She may not prove to be competition to me, but the gall of what she did irks me. I can't do anything about it because we had no contract, but I have every right to be angry and to call her on her ethics, or lack thereof. Eventually, I will mellow out and call on her to fill in for me once in awhile. Why not? She knows my clients already and I know she's responsible.

Then, my father made my head hurt last week. He had his appointment with the oncologist. She wants to stage his disease so she needs to see another CT scan before they proceed. They couldn't get him in where he usually goes until April 29th. Seemed like a long time to wait, especially since he is in pain probably because an enlarged lymph node is pressing on a vein and causing his leg to swell. So, I call his doctor and explain to her that he is in a lot of pain and can he please get a CT scan sooner. He can, if he goes to a different facility, 15 minutes from his house. He could have his CT scan this week and be on the medication by the end of the week, which the lymph nodes would hopefully respond to quickly and he could be out of pain sooner. No brainer to normal people. Dad is not a normal person; however, and has refused this option choosing to wait in pain until April 29th. He says he wants to go to the place he's familiar with. A CT scan is the same everywhere Dad! I felt dejected that he didn't want my help. I thought I was doing a good thing and was expecting a much different response. At least he thanked me for my efforts. I don't understand why someone wouldn't want to relieve themselves of pain as soon as possible. Whatever. I've done what I could do. I can't help it if he doesn't want to help himself.

Finally, on the wedding front....We think we've decided on the Camden Snow Bowl for a location and it will likely be over Columbus Day weekend. The Snow Bowl has a lodge, lots of parking, a kitchen, tennis courts, pond, hiking, ball field, and a covered deck. Great place for a party. Everyone will have to bring a change of clothes for the activities, or just dress casually to begin with. Food will probably be lobster, chicken, and something veggie. Cake and homemade ice cream (that we all help make) for dessert.

LIVESTRONG for my Dad

My friend Carissa and I had a wonderful, symbolic gesture planned to end my cancer that involved a potted plant (it is spring after all!) and burying our yellow, Livestrong bracelets that we have been wearing faithfully since October. Carissa did hers and presented me with the beautiful flowering plant and before I got around to also burying my bracelet I found out my father's leukemia is progressing to the point he likely needs chemotherapy.

My sister called me with the news. Apparently he has had a swollen leg for months and now notices enlarged lymph nodes in his neck and groin. He has known about his chronic leukemia for years now, but the doctors have been monitoring it via blood work and he has been within healthy range. No one could figure out his leg, though. It started with pain and they said it was a pinched nerve. Pain medication and time would take care of that. His leg swelled two weeks after that diagnosis. They couldn't find any clot, so they were stumped. A new doctor to my Dad, looked at his latest CAT scan (forgot to ask how recent) and noticed enlarged lymph nodes in his stomach. He has surmised that the enlarged nodes could be squeezing a vein. Enlarged nodes also indicate that his leukemia is starting to overtake the healthy blood cells and pooling in the nodes. He's also been feeling extremely tired and loosing a lot of weight.

Life Lesson Post-Cancer - Lesson #2 - You are the most important member of your health care team! Yes, team. You are the leader calling the shots, not your doctor. Use your doctor as an opinionated resource. You have the right and responsibility to question your treatment or care, question what the doctor is doing or NOT doing. You will be more empowered to be the leader if you are prepared when you meet with your doctor. Do your own research, talk to others like you, and if you have any doubts, you have the right to seek a second opinion. What I learned navigating our stupid health care system for the last six months is that doctors are just people, not gods. Fixing you is their job, and they are overworked like the rest of us. They can take shortcuts and easy ways out too. You can help them help you by being proactive and sharing everything about how your body feels. Oh, and if you still don't have the kahunas to MAKE them listen to you, remember that without you, they wouldn't have a paycheck. And if that doesn't help, take someone with you as your advocate.

My cancer goes away, but my Dad's gets worse. YIN and YANG. The GOOD and the BAD. My little life and the great big universe revolving in the same way. In solidarity to my father, I'm keeping my bracelet on as long as it takes and will bury it when HIS cancer is back under control, hopefully. I'm worried, though. He is not a young man and already has other health issues. He was asking me what chemotherapy was like, so I told him my experience, but also told him it is different for everyone. His won't be anything like mine because I am young and he is old and has been battering his body for most of his life with cigarettes and alcohol. Our cancers aren't the same and our drugs won't be the same. I wish he COULD have the exact same experience as me, for I fear it will be very hard for him at his age. He has an appointment with his oncologist on Monday to learn more about his treatment. Would really like to be there to act as his advocate especially since I've been through it all before. All I can do from across the country is send him information I find on the net that is pertinent, being careful to not overwhelm him, and hope he reads it and asks his doctors about it. Deja vu. Mel and I are back in the researching phase all over again.