Parker completed the mile swim at Boy Scout Camp with a smile on his face!

I haven't posted a blog entry since July 7! In the meantime I've spent a lot of hours at the doctor, emergency room, and bed. I missed 2 treatments due to my illness, drank Rachel's smoothies so I could gag some really big antibiotics down, finished reading "The Wednesday Letters" for September's book club, and didn't do much else. I didn't even feel well enough to do puzzles when I was waiting in the doctor's office. My fever got as high as 104.3 degrees, and stayed elevated for 9 days. My oxygen saturation fell to 89% from its usual 99 to 100%. In trying to diagnose my illness I went through every test known to man. I had several blood tests, urine tests, flu swabs, chest x-rays, a spinal tap, an EKG, and the test where they look at your heart with an ultrasound machine. After all these tests they concluded I had a rare kind of pneumonia that occurs in chemo patients. Apparently after ruling everything else out that's the only thing they could come up with. So they took me off the antibiotic I was prescribed in the hospital and put me on another type that's much huger and harder to take, plus I take six a day, as compared to one of the other kind.
I'm seventeen treatments into chemo and it's really starting to take a toll on my body. I saw my doctor yesterday and he deemed I was healthy enough to get treatment. I was very reluctant since I've felt horrible ever since my first Taxol infusion on the 7th. My doctor insisted my illness was caused by the Adria/Cytoxin treatments and not the Taxol. I made him promise the Taxol wouldn't make me sick before I agreed to do it, and he promised without hesitation, so I took his word for it and mentally prepared for another go.
When I got called into the chemo suite I had a nurse I was unfamiliar with since I've been going on Mondays and it was a Thursday. She accessed my port perfectly, gave me the Benadryl and steroids, and immediately came back with the Taxol. It's slower on Thursdays so the pharmacists are right on top of things. She asked if I had had any reaction to Taxol the first time I got it, and I told her no. So she just started the infusion at the regular pace and left to call in another patient. About 10 minutes into the treatment I started to feel a major reaction coming on! It felt like a spike was being driven into my lower back, my lungs seemed to shrink and refuse to take in air, and the closest nurse was tending to another patient a few chairs away. I tried to wait until she was done talking to him, but I couldn't stand it anymore, so I raised my hand and said, "Excuse me, I think I'm having a reaction to this medicine." Immediately I was surrounded by 3 nurses, a pharmacist with Benadryl and morphine, and a nurses assistant taking vitals. The morphine took 5 or 10 minutes to work--a very long 5 or 10 minutes--and I was finally able to relax and get a breath again. My nurse went to ask Dr. Montgomery if she should restart the treatment or send me home, and of course he told her to restart it. She did say he felt bad for promising me whip cream and cherries. I wonder how he's going to motivate me to do it next week. So like a lamb to the slaughter I sat there and watched her restart the poisonous drip that had caused me excruciating pain just minutes earlier, but she stayed nearby this time, slowed down the drip, and made sure I was tolerating the medicine before she left, and the morphine and Benadryl got me through. Ironically I didn't take anyone with me this time since I wasn't sure treatment was going to be happening, so no one got to share in my pain.
And today I have an itchy rash all over my body that I have to take more Benadryl for. I'm pretty sure I'm allergic to Taxol, but my doctor seems determined to give it to me. It may be a long 10 weeks!
I need to say thank you to Rachel for the exceptional video tribute she made for my 43rd birthday. It was creative, funny, heartwarming, and professional. You know how much I love gifts that take time and planning, and that project took hours and hours to film and edit. It was great to have so many friends there to watch it with me. It's something I'll treasure and watch again, Rachel. Thank you so much for the tribute!
Thanks to all my friends and family for continuing to support us with meals, laundry and cleaning. It's been invaluable the last few weeks while I've been down. Greg's having a hard time working 12 hour days and then coming home and doing everything I used to do, but it's a great relief to him when he doesn't have to cook dinner or throw in a load of laundry on top of it.
Well, I have to take the Benadryl now, and that's likely to put me to sleep for a few hours, so I'll wrap up for today. This LONG treatment is beating me up, but it helps knowing prayers are being offered on my behalf, people are fasting for me, and sending positive vibrations my way. I'll keep on putting one foot in front of the other, take it one fever or rash at a time, continue to trust my doctor, and eventually get through this.

Taxol is EASY!

I was going to update you last night, but I started the project I've been dreading--going through hundreds of medical bill and insurance statements, figuring out which we've paid, which were overdue, and which were still pending insurance payments, and figuring out how Greg's going to pull that money out of an already struggling business. By the time I done with it all it was about 4 a.m., a little too late to start the blog, but at least now Greg has a better picture of what kind of money we're talking. He will also be happy to know I am done with the Neupogen shots and their hefty price tag. I ended up administering 47 shots, and our cost after insurance had paid their 2/3rds was a $3,500 give or take a few dollars. Maybe we should have risked infection and taken the kids to Hawaii instead. Or furnished a few rooms. Or bought everyone in the family a new wardrobe. But 47 shots in the abdomen was kind of fun, and I stayed pretty infection free for those first 15 weeks. Go white blood cells!


Now that you feel sufficiently sorry for Greg's lot in life, I have a treatment day to tell you about. My friend for the treatment this week was Stephanie Searle, and she got to share with me the transition from awful Adria to delightful (so they tell me) Taxol. Stephanie had enlisted her kids, Kendra and Kim especially, to take care of Tadman while we were at treatment. Thank you Kendra, Kim, and Taylor for taking such good care of Tadman for me. I know he had fun because he was sleeping like a baby when we returned!


Stephanie was familiar with MSTI because her grandma had been treated there a few years back for pancreatic cancer. We found a place in the tiny parking lot (Hurrah!), checked in, and I dragged Stephanie over to the latest puzzle. Stephanie said she was into 200 piece puzzles and not 1000 piece puzzles, but she was kind enough to humor me by participating even though her heart was not completely in it. (We're definitely putting a puzzle table up in that bonus room when we start using it. Then I can be up there supervising and doing puzzles when my kids are watching movies and playing video games with their posses.) Of course the puzzle making never lasts long, because they always come and tell me I need to get my blood draw, then the minute I return I get called to wait in the doctor's examination room, where I wait a long, long time, then see the doctor, get back to the puzzled for seconds, then go to chemo. So Stephanie only had probably 10 minutes total of puzzle building to put up with. This ends the puzzle rant for the week.

So when we were actually with the doctor, after the long wait (you will be happy to hear that my weight and blood counts were not alarming this week), I got to hear how much happier I was going to be on these Taxol treatments I was beginning this week. When I asked what symptoms to expect I was told hair loss was possible! Shocking! Also I may have some loss of sensation in my fingertips and toes, perhaps a metallic taste in my mouth, and a little fatigue. I hope I don't lose my hair! I've got some serious regrowth occurring.
After seeing the doctor and hearing how "easy" this Taxol business is going to be, I was a little surprised when the nurse administering the Taxol started explaining the protocol she'd be following. Intead of anti-nausea drugs, with Taxol they start you out with a bunch of Benadryl and stomach acid reducers (I can't remember which particular brand right now), then they wait for your body to really ingest the Benadryl, because they worry about allergic reactions to the Taxol. While waiting for the Benadryl, the nurse gets the oxygen ready, brings a mask for resuscitation, and tells you possible reactions you should tell her about should you experience them. While all this is going on I'm thinking, "This sounds easy." The nurse kept assuring me there was no need to worry. They could almost always control the allergic reactions with more Benadryl, and the few times the reaction has been severe, the rescue team from the hospital has responded quickly enough that resuscitation didn't take place at MSTI, but at the hospital. The doctor failed to describe these possible allergic reactions during my examination. Curious.
The good news is Stephanie got out of there without having to watch me go into cardiac arrest. I actually didn't have any extreme reactions to the Taxol, although the Benadryl did make me a little drowsy. Stephanie was brave enough to stick by me through all these warnings of adversity, and let me borrow her phone to call Rachel and ask her to deliver kids places as the afternoon slipped away. The Taxol is a longer process because of the wait time for the Benadryl and because it is administered by the drip whereas Adria is injected into the line connected to the port and takes only a few minutes to administer.
It is now Wednesday, I'm on the third attempt to get this blog written, and so far, I feel about the same as I did on the Adria. I am hoping the side effects I'm still experiencing (particularly the very sore bottom and feet) are residual effects and will go away over time. I look forward to the day when I don't feel like crying every time I have to go to the bathroom, and the skin on the bottom of my feet no longer peels off in big sheets and leaves the soles very sensitive and painful to the touch. I also look forward to the day, although it might adversely effect the weight loss, when I look forward to eating a meal instead of approaching a meal like a necessary dose of medicine.
After all the excitement of a possible cardiac arrest, Stephanie and her daughter, Justine, took me to Donny Mac's Trailer Park Cuisine. It was my first time, and I was favorably impressed. They have a great patio with misters, a cool college hang-out vibe, and their booth benches have wheels on them so you can get as close or as far away as you need to be from the table depending on the girth of your belly and the length of your arms. The food was even pretty good. It's very nice to have lunch with friends to look forward to each Monday after treatment. Thank you Stephanie, and all my other companions, for taking the time to come with me to lunch after already taking several hours for treatment. And thanks to your families for sacrificing all you could do for them in that time you are away. The staff at MSTI is very favorably impressed with my constantly changing, but always kind and supportive string of companions. They can't believe how many friends I have! Neither can I.
I will have to ask my friend Jesse McOmber about running marathons, since I've never even considered doing such a crazy thing, but I imagine along the way you encounter many battles with yourself. You probably wonder if your will to complete the race can overcome the pain your body must experience along the way. I'm sure there are hard miles, and easier miles when those endorphins kick in, and then hard miles again when the drain of energy overcomes the endorphin rush. As I am not a marathoner it's hard to know if this long long chemotherapy course can be compared to a marathon, but I certainly am experiencing those ups and downs, those moments of confidence and then self-doubt, and sometimes, and more and more often as treatment goes on, discouragement in my own weaknesses, my shortcomings as a mother and friend and wife, my self-absorbedness, my inability to get beyond my own concerns and on to the problems of others. I am tired of accepting help and settling for missed appointments and a grubby house and an imperfect yard and everything else that comes with being less than I used to be. If you're wondering why I cry at church a lot some days, that's usually why. I'm thinking about my ever diminishing capacities and my human frailty, and doing a little wallowing in it. I realize this just shows a greater weakness. I know this just means I have not yet accepted that I don't matter that much in the big scheme of things, that the Lord was in control before I got cancer, He is now, and He will be after the treatment is over. I don't know why I am unable to completely drop my burdens at His feet and why I insist upon struggling against things I have no control over. Maybe this experience is to break my will at last, but, oh, it is hard for me to give up my illusion of control! I think maybe it is because I feel passionately about things, like my kids, and I think they'll perceive I don't care as much if I let go. I don't know. I'm still trying to figure things out as I put one foot in front of the other each day.

I traditionally end my blog by thinking about my blessings, and I think it's a good way to end. I am thankful for fireworks--the big ones at the community Fourth of July celebrations. Whenever I see them I feel the wonder and excitement of childhood all over again, especially when I'm holding my 2-year-old and seeing his reaction to them for the first time. He was sure they were going to get in his shoes! I am thankful for ice cream, which somehow tastes good no matter what ails you. I am thankful for summertime, and the different pace and feel it has, the variety and break in routine it provides that in the end makes you excited for its conclusion and the establishment of routine once again. It's just the right length of time to be creative and loose before buckling down again in the fall. I am thankful that my husband has not abandoned me even though I have moved from the asset to the liability column in his life. I know I am one more drain on those ever dwindling resources and I appreciate his sense of duty and honor that keeps him going to the salt mines six days a week while I do very little of anything at home, and I am hugely grateful to the dozens of friends and family trying to pick up my slack. I am thankful that my kids have activities like scout camp, girls' camp, high adventure, and football workouts to give them a sense of purpose this summer since I can't give them the activities and structure I normally provide.

Happy Birthday to my brother, John, on the third of July. He and his wife sent me a lovely bouquet of flowers on my birthday and I did nothing for him, but I did remember his birthday and think about him on that day, and I am very grateful for him and his family and my association with them.

Lastly, to all of you who continue to provide meals, companionship during treatments, cleaning, laundry service, yard clean-up, cards, uplifting thoughts, and prayers on behalf of my family and me, thank you. I know it must be hard to sign up for a meal when you've brought three already or to come clean again, or to watch Tadman on that endless treatment day, but I want you to know you are really holding a family on the edge together. I don't think we'd be intact without your help. And although I know Justine doesn't read my blog, please tell her I mentioned how grateful I am to her for the loving attention she is giving to Tadman as she teaches him to swim several days a week, and how she keeps those sign-up sheets traveling around until all the needs have been met, and how she fills any spot that hasn't been taken. She is a genuine, lovely person inside and out. Thank you Kimberly and Kendra for the loving care you gave Tadman while your mom was with me at treatment this week! I want you all to know how very humbled I am accepting all this help. It is really hard for me, in fact I think about calling Justine and telling her we don't need any more meals or cleaning every week, but in spite of my discomfort in accepting it, I do appreciate it. Thank you.