Gratitude

I am reminded daily of the value of friends and family as we wade through this difficult time. Thank you. Okay, this is not a substitute for thank you notes. I know Miss Manners would never accept a blogged thank you note, and, quite frankly, I can't even begin to count the gestures of kindness that we have received. Visits, cards, vegetables, meals, miracles in envelopes, brownies and other treats, prayers, loaned dvds, books, cheer in a box, home-made posters, photos, agghhh...I shouldn't have started because there is no way I'll remember them all. It's not like wedding gifts , which are all opened at the same time, and are all tangible, and, while the bride and groom ooh and aah over each crystal candleholder, there's someone sitting behind them with a tablet and pen, writing down all the names and what was given. This isn't that organized--I'm not that organized. This is as random as the gifts we receive. I want to say thank you to the older couple that sends Maura a card almost every week. You should see how it puts a smile on her face. I want to thank her friends who would think I'm weird for thanking them just for hanging out at our house. I want to thank the friend who left my washed and ironed blouse hanging on my front door...I think I know how you got a hold of it, but I'm not sure. I want to thank the young friend who was so moved when she saw Maura in so much pain, that she actually bought and offered me...um...an illegal substance...in the hopes that Maura would take it to relieve her suffering. I want to thank that colleague at the college who understands that I just don't care about anything at work like I used to and who understands that it's a temporary condition. I want to thank the colleague who said that my newfound perspective is an improvement. I want to thank strangers who let us know that they are praying for Maura. I want to thank the young friend who, just a few weeks into remission herself, committed to be a friend to Maura (and all of us) and has been an amazing and steadfast source of knowledge and strength and black bean burritos. I want to thank those who can handle "bald in the land of big hair", and those who at least try. I want to thank God because he sends these hundreds of wonderful people as proof of his love.

Chemo Days for Cycle 5 are behind us. No life-threatening issues, although Maura did get a transfusion of two units of red blood cells yesterday. Fortunately, it was not under the same scary circumstances as at the end of chemo in Cycle 3. Nevertheless, it's disturbing that her red blood cell count is not recovering quickly. The transfusion has not perked her up as we might have liked--no burst of energy today. Instead, she is very quiet, too tired to engage in conversation.

My God, how I love this person.

Tired

We arrived home at 1:30 a.m. following Day 2 of chemo. The chemo units were very busy today, so we waited several hours past our appointment time before they could get us a room. In the meantime the pump beeped to let us know that the chemo bags were empty. I took care of it myself in the waiting room. Since Tropical Storm Edouard, I've become an expert at disconnecting her from the pump when needed. And that beeping sound...when this is over, I never want to hear that beep beep beep again. Maura came home exhausted, somewhat nauseated, but otherwise, okay.
She is losing her eyelashes. She has a single bottom lash left, and the top ones are thinned out. Small price to pay for tumor termination.

Amen

Today Maura had CT scans and a visit with her oncologist, Dr. Benjamin, chair of the Sarcoma Center of M D Anderson--a guy who's seen more sarcoma than almost anyone in the world. Today, Dr. B. told Maura that, in disease as extensive as hers, she is having one of the best responses to chemo that he has ever seen.
Thank you, God.
Amen. :)
p.s. Cycle 5 starts on Sunday.

By Popular Demand

Maura's chili recipe will be at the end of this post.

 It's been a quiet week.  Blood counts have been very low as expected, but they are starting to climb back up now.  The week has been predictable, which is good. When she felt bad, we knew why and we also knew that it was temporary. 

Here is Maura's vegetarian chili recipe:

1/2 medium onion, diced

1 can diced tomatoes

1 can tomato sauce (same size as the diced tomatoes)

1 can beans (red or black or kidney or your favorite)

1 pkg. Morning Star Meal Starter Crumbles (in the vegetarian frozen food section...looks like ground beef)

1 pkg chili seasoning

Sautee crumbles and onion on medium heat in a large frying pan.

Add other ingredients.   Stir over medium heat until hot. Serve. 

Optional: Serve with sour cream and grated cheddar cheese

Tastes good with a side of corn bread.

Wasn't that easy?

Just A Touch Of Bleh

There are reasons for taking anti-nausea meds.

Nice

Chemo days of Cycle Four are over. Hurray! This cycle went very smoothly, with the exception of the one-day delay due to Tropical Storm Edouard. Maura refused all the hospital-administered ant-nausea meds on Friday and some of them on Thursday. She felt pretty good, under the circumstances. Her blood pressure and heart rate have been "acceptable." Nice not to have any scares like last cycle. Thanks again to all for the cards and visits. They mean a lot to her-to us.

Cancellation

Day 3 of Chemotherapy is cancelled for Tuesday because of the impending arrival of Hurricane Edouard in the morning. Maura is hooked up to the pump. When the pump beeps tomorrow (when the chemo bags are empty), we will be at home instead of at the hospital. They gave her a quick lesson in how to disconnect from the pump, and then she has the rest of the day off. Chemo resumes on Wednesday(Day 3), both the pump and the "in hospital" drugs.  

Pretty in Pink

Maura and her friends having fun with wild wigs. Don't they look awesome?

Central Line

Today Maura had her central line reinserted into the superior vena cava. Everything is fine. It was a much easier procedure this time than in May.

Good Days

     The blissful days are coming to an end. We have enjoyed the extra time between the third and fourth chemo cycles, but now Maura has to get back to work.  Today she spent the day at the hospital. Tomorrow, too. Her central line will be re-inserted tomorrow. Chemo starts on Sunday. 

     She took advantage of her extra energy this week, after her blood counts went up, starting out slowly, with a trip to the movies. Then, a couple of short, focused shopping trips. The most draining activity? A few hours at the beach--the last time she will be able to totally immerse herself in the ocean or any water until after treatments are over and the central line comes out for good. The wildest day? Wig shopping and an evening out with her friends. Yes, she finally decided to wear a wig instead of scarves and caps for a change. So, she picked out the cutest wig, a short bob. Pink. Magenta, actually, and she looks fabulous in it. That evening, she and her friends went out to dinner. Maura in her pink wig; Katie in a green wig; Kara in a black , spikey Sharon Osbourne/Liza Minelli freaky wig. What a trio!

     

     

Sleeping

Parents will understand this. You know that perfect peace that you feel when you watch your children sleeping? It's a feeling that doesn't disappear as they grow older, and, I admit that I still cry when I think about the Munsch children's story Love You Forever. He captured that slice of joy in his simple tale. This morning I stood at Maura's doorway, studying her even breathing. She was splayed out, stomach to the mattress, arms and legs akimbo. How wonderful that she can, for a few days, sleep in her favorite position, without having to worry about tubes or chemo pump. And there I found myself softly singing the Munsch verse: I'll love you forever/I'll like you for always/As long as I'm living/My baby you'll be.

Sigh of Relief

     Things are so much better! Blood counts are way up. Feet and hands, less purple, less painful. She cooked a meal on Thursday. Yes, Maura's famous vegetarian chili accomplished so much more than just satisfy our hunger--it cheered our hearts and comforted our souls. Oh, and we went to a movie last night. That, too, was wonderful.  Right now, every activity, every smile, every moment gives us so much joy. I hope that even after she is cured, that this heightened sense of appreciation for life stays with us all forever.  

     We still don't know when the central line will be reinserted or when the next chemo cycle begins. Should be sometime next week.  Maura is basking in the freedom from tubes and toxic drugs.   

I (we) Told You(them) So

Maura's central IV line has been taken out and will have to be re-inserted. After two months of telling "them" that it leaked, and having them check it three times and telling us that it didn't, it turns out that we were right. At first we thought that I wasn't doing a good job of putting a protective layer of plastic over it when she showered; then we thought that maybe she just sweat a lot; but we quickly realized that the darn thing leaked for real. Today, Maura talked to the IV therapist who we've known all along to be the most competent one they have, and she knew just by Maura's description what the problem was. "Oh, you have a duct leak." Yep, when she had the catheter inserted into her vein in May, they apparently punctured a lymph duct, or something like that, and it never healed on it's own. The doctor immediately agreed (I don't know why we never told him about it) and will schedule a new date for her CVC insertion when her white blood cells and platelets go back up. In theory, the frustration of this not having been caught earlier should be completely dwarfed by the immense satisfaction of being right. Unfortunately, Maura has to suffer because of it, so the satisfaction is short-lived. She's determined that this time she's going to ask to be put to sleep (in the unconscious sense, not in the veterinary sense) during the procedure. As usual, her attitude about the whole thing is great, and she's happy not to have those tubes hanging on her chest for a few days.

Feeling Better

She's feeling better tonight. When she feels good, it's just easier to deal with anything, including endless blood tests!  She blew off the blood tests she was supposed to have both yesterday and today, but can you blame her? She has to be at MD Anderson so-o-o many days that even a weekend off is a luxury she treasures.   Tomorrow she'll be back on track for blood work. We expect blood counts to be at safe levels later this week. 

She can't walk much. The burning foot has turned into burning hands and feet==it's like a bad sunburn from the inside out.  The right foot is a mottled red and purple. Anytime she walks or puts pressure on her hands, you can actually see it get worse. So she stays in one place most of the time, and we treat her hands and feet with hydrocortisone and lotion. Adam carried her to and fro for a couple of days. That was kind of fun to watch. Did anyone see the episode of Arrested Development where Martin Short is carried around by some guy named Dragon? It was sort of like that for Adam and Maura. Just kidding. 

Sigh

Fever of 100.4. Burning feet. New pain med that makes her throw up.  Feeling yucky. Leaky IV port. Blood count is low all around. 

Platelets are too low, so they want her to go in for daily blood tests over the weekend. She's thinking about it--she's thinking it sucks.

Things will be better on Monday. 

Burning

Oh, joy. A new side effect:

The sole of her right foot burns as if she had stepped on hot coals. Just the right foot. Just the sole. Weird.

White cells are down to 0.1, so no visitors for a few days.

From Jesus' Side to Maura's Veins-John 19:34

So, yesterday was supposed to be a simple disconnect-from-the-chemo-pump day, which isn't so simple anyway. Instead, we got home this morning at 2:30. When her blood pressure plummeted to about 50/30 (yes, you read that correctly), and her heart rate hovered around 130, they pumped her with fluids, gave her two units of blood (her first blood transfusion), and, later, hooked her back up to the pump with a nice three-liter bag of fluids with electrolytes to take home. Unfortunately, her hospital-free weekend is out--we have to go back both tonight and tomorrow night for another big bag of fluids for the pump. Oh, and the catheter site has a little infection, so that means cultures and blood tests and daily dressing changes and multiple visits to IV Therapy this coming week. I'd like to say that the blood perked her right up, but she is too exhausted to tell. Her blood pressure did go back up to an acceptable level, and her pulse is normal. Today, we have so much to be thankful for.

Crummy

It's been a rough couple of days.  Round 3 is causing her to feel pretty crummy.--really bad, in fact. We're at the hospital now. We came in this afternoon for the last of chemo, and to get disconnected from the chemo pump, and to receive her post-chemo meds, but her blood pressure was very, very low and  her pulse rate was very, very high---a treacherous combination--so they're not too anxious to clear us out of here just yet. Sigh. 

Round 3

Here we go again. Round 3 of Chemotherapy starts in the morning.