Eighth Adcetris Dose

At least halfway through chemo after today. 8/16 or halfway through the maximum amount of Adcetris doses allowed.

If it continues as well as it has been and the peripheral neuropathy eases up, the rest of the doses should be no problem.

Although, if I'm honest, ever since my last appointment and the fact that Dr. Wendy can no longer feel the largest tumor, my hope is that we'll schedule scans in the next three weeks (normal procedure after every two doses, so it's time again), and those scans will show no more cancer.

Not a lot to report today, although I do think the peripheral neuropathy in my hands is slightly better. It's a little easier to write longhand and to type. I can tell because I'm not watching my fingers or using the Backspace key as often. But my balance actually seems worse lately and I can't tell that there's any improvement in my feet and legs. Darn!

Dr. Wendy sounds disappointed that I haven't seen a bigger improvement, but she's grateful that it's not getting worse so we'll continue the reduced dosage.

Visit with Dr. Wendy, draw blood work, three anti-nausea medications, Adcetris, and two hours later I'm out of there.

A CT/CAT scan is scheduled for Monday, February 11. Hopefully, it's great news--no more cancer; and we can be done with Adcetris for at least 7-10 more years. That's what I'm hoping for and what would qualify for "this treatment exceeding all expectations."

Fast and Testimony Meeting

During the prelude music and start of Sacrament Meeting, I'm contemplating on how good I feel for going through my fifth regimen of chemo. And I realize that my rather foreign pessimistic outlook of late is gone. I no longer feel so dark inside, like I'm fighting a losing battle. Sure, the next instance might kill me, but I might have a long time before the lymphoma is back. I have hope again. These are truly amazing discoveries!

And, as usual, I start scanning the congregation and reflecting on how many individuals in our ward that I feel truly supported by. I love these people and there's way too many to list.

A few things definitely stand out though: purple flowers planted in our flower beds by the Mia Maids, a large container filled with purple flowers from Jana, purple flowers and a cuddly blanket from Sandy, a very touching note from John and an equally touching post/email from Jennifer, and a beautiful chest of notes from lots of people and delivered by Maddie on a night when everything seemed really black and hopeless.

Suddenly, I'm overwhelmed by all of the love and support that I feel. All of those prayers are why this regimen is treating me so well so far. I know it. It's a great tender and miraculous mercy from our ward members who are definitely acting as the Savior's hands here on the earth.

Thank you all. I'm truly touched and grateful!

Seventh Adcetris Dose

Dr. Wendy can no longer feel the largest tumor at the bend of my right leg. Wow! Wouldn't that be awesome if the cancer is gone!

I've lost 13 pounds since the last dose. That's just over 60 pounds total over the last nine months. Yahoo! I want to lose at least 15 pounds so I'm no longer in the obese BMI category. Dr. Wendy is concerned, but I've been eating well so I'm just grateful.

We have a longish conversation about peripheral neuropathy though. I'm not happy about that. I describe some of the limitations I've noticed:

* Fingers are completely numb and my hands are at least 3/4 numb.
* Forearms are at least 1/2 numb up to my elbow.
* Feet are at least 3/4 numb.
* Legs are at least 1/2 numb to the bottom of my knee.
* Typing is very difficult and I often hit the wrong key. Backspace is now my best friend.
* I can't play the piano or organ any more without having to watch my hands to see what keys I'm playing, plus I can't control that they continue to hold any keys so they randomly lift and quit playing at odd times on the organ.
* My handwriting has changed drastically and now reminds me of an 80 year-old woman's handwriting because it's difficult to hold a writing utensil and control the strokes.
* I can't button blouses or jeans or feel zippers to pull them up.
* Hooking my bra is impossible.
* Putting in earrings and--even more difficult--putting on their backs is now impossible.
* It's hard to walk in flats. Forget heels entirely!
* Balancing is almost impossible on dry ground. I fell in Target and have almost fallen twice at work. Didn't trip on anything; I just can't feel my feet to place each step securely and firmly.

After leaving the room for a few minutes, Dr. Wendy returns to say I have peripheral neuropathy, Grade 2 or 3. The guidelines for Adcetris call for stopping chemo until Grade 1 returns.

I'm not comfortable with that. These affects can be permanent. What if we never get back to Grade 1? After some discussion, she agrees to continue Adcetris, but on a reduced doseage. We will reduce the 1.8 unit/kg to 1.2 unit/kg. I don't like that we're reducing the dose by a full third, but at least we're continuing forward.

Do you know what else I've noticed? The doses are getting easier. What's up with that? In my entire history of chemo, every dose gets harder and harder--zapping almost all of my physical and emotional energy. Plus, every different chemo regimen gets harder and harder for my body because of all the former rounds (MOPP, ADV, ICE, BEAM, and now Adcetris) and poisons doctors pumped into it.

Not now. In fact, I've even started driving in to work 2-3 times a week. Wow! I'm am definitely not complaining. I have energy to do whatever I want (as long as I don't try to move my numb feet too fast) and I'm mentally alert as well.

The nausea is contained. The bone pain is being managed. This is great! More than I ever dared to hope or plan for. Hooray!