Saturday, December 30, 2006

Happy New Year

December 28th:

I hope everyone is enjoying the holiday season with their family. We had a nice Christmas. The bone marrow biopsy went o.k. Not the best, not the worst. I have had a lot of lingering pain, which I am still dealing with, but overall I think this time was better than the last. I've been seeing a chiropractor and she's been able to fix the rib problem I had, eliminating yet another source of pain.

The medicine my doctor prescribed for the neuropathy caused severe swelling in my feet, ankles and calves, to the point that walking was excruciating. I quit taking it after two days. It seems to have, at least temporarily, helped with the neuropathy, for which I am thankful.

I find out the results of last week's bone marrow biopsy tomorrow at my weekly appointment. I'll let you know. This one doesn't tell us a whole lot, but it tells enough that I'm nervous about the results. Trying to learn not to be. I know it's a faith issue I need to deal with because this is how it's going to be the rest of my life, and I can't spend it on pins and needles waiting for the next test result. I received the following advice on a Christmas card from one of my doctors:

Life is good -- but regrets can drive you mad
Walk blindly into the light and reach out for His hand
Don't ask any questions and don't try to understand
Open up your mind and then open up your heart
Be happy and never hate
Don't waste time, there is something more that you've been handed

It was such a good reminder to me. Life IS a gift -- for all of us. Nobody knows their days. But for me? There is something more I've been handed. Thousands of people went before me and died going through clinical trials while they figured out what the best treatment options were, and thousands more are still dying in those same trials -- always and ever seeking a cure for this horrible disease. I go to the cancer hospital and see so many sick, depressed, horrible looking people that I didn't know really existed before I got sick. Were my eyes just blind to it? I don't know. Did I just look away like everyone else does when I'm out in public without a wig, wearing a surgical mask? I wish for just one day that all of those with cancer would just be brave and go out bald and make everyone aware of how HUGE of a disease this has become. I think you would all be shocked. Maybe then more children would grow up to be oncologists, maybe then more people would register to be stem cell/bone marrow donors. I don't the meantime, I know I pray for a cure, for myself, and for all the others I have come to know who are suffering, some as young as 6 months.

As a side note, as it is nearing the end of the year, and some of you may be looking for a good charity for tax deduction purposes, consider the American Leukemia and Lymphoma Society (, or the American Cancer Society ( They both do a lot of good things for those of us who are ill.

Update: December 30th

I went to the doctor yesterday and got the results from my biopsy. They had warned me that at 30 days they wouldn't be able to tell much because most of the cells would still be immature (one of my doctors described it as a bunch of babies and you don't know if they're going to grow up to be juvenile delinquents (leukemic) or good cells. They had also warned me that it's not unusual at this point to see some leukemic cells. Well, I had 40% mature cells and in capitol letters on the report, "NO EVIDENCE OF ACUTE LEUKEMIA." This technically means I am finally in remission and I asked the nurse practitioner if this was good and I should be happy and she said yes, it's a wonderful report for 30 days. I'll have another biopsy at 100 days, so sometime in February, and we want that to be clean as well. Ultimately they want me to make it a year from transplant (11/13) without a relapse because that greatly lowers the overall risk of relapse. If I make it five years without a relapse, I'll be considered "cured."

I also found out that the extreme nausea and vomiting I struggled with last week is most likely a mild form of GVHD. They had warned me about Daniel's immune system attacking my gut, but placed more emphasis on things like diarrhea and didn't mention vomiting, so it didn't come to mind. I've been doing better the last few days and have a prescription written to take if it gets bad again. It's a steroid, so I would prefer to avoid it if possible. Mild GVHD is a good thing, so I'm not complaining too much. I'm so used to throwing up it doesn't really phase me anymore. It just bothers me because it interferes with weight gain. I was down a few pounds this week but I also lost all the swelling in my legs and feet, and I'm wondering if that had more to do with it than anything else. Otherwise my appetite is good, for which I am thankful.

I'll put an end to this lengthy post and bid you all a Happy New Year! I'm quite content to say goodbye to 2006 and pray for a better 2007.

Love you all,

Thursday, December 14, 2006

General Update

I thought I should write a general update so you all know what life is like right now. I'm down to one doctor visit a week -- at Barnes in St. Louis. Much better than the original 2-3 appointments for blood draws that I originally thought I'd have. That could change, but I'm happy with it for now. I have an appointment tomorrow and I am curious to find out what my counts are because my energy level is really low. I'm hoping I won't need a blood transfusion, but that's not uncommon at this point and is a distinct possibility.

Originally they wanted to do the bone marrow biopsy tomorrow but they didn't have an opening, so it is scheduled for next Friday, which I believe is the 22nd. We discussed various options regarding pain medication/sedation and I expect this one to go much better. Hopefully I won't have the swelling and pain for days afterwards. I just want to have a very special Christmas with my family this year.

Two of my sisters are still here assisting me as my strength has been slow to return. I'm so thankful for their willingness to serve me and sometimes it seems be my personal maids. Mom pointed out that it's only been a month since I was basically dead -- all my counts at zero, and to not be hard on myself. One of my old friends wrote on the blog to "Rest in the Lord, and trust in His strength." I needed to hear that today, thank you.

Other than the overall weakness, my only other struggle has been with side effects from either the radiation, chemo, or both. I've developed what I think is neuropathy, mostly in my feet, and for some reason mostly at night. The pain is bad enough to keep me from sleeping, though enough pain meds eventually knock me out. I'll be talking to the doctor about it tomorrow. Thankfully from what I've read this is a less common side effect that should eventually go away. I've also lost most of my eye brows and eye lashes, and the hair on my head is still falling out. I had about 3/4" growth prior to the transplant but we had to shave it off while I was at Barnes. I think the chemo they gave me was some rough stuff. I'm anxious for the growth to return. The radiation also leaves me with very, very dry skin that also feels like a sunburn, and even lukewarm water feels hot to the touch. These are little things in comparison to the overall picture, but as I said, I just wanted to let you know what life is like right now.


Tuesday, December 05, 2006

...and this little piggy went all the way home

I was just sitting here thinking of a hymn and decided to look up the words. I didn't know all of the verses, but found it so perfectly appropriate for how I feel today that I thought I'd just post the whole thing.

"Praise to the Lord, the Almighty"
by Joachim Neander, 1650-1680
Translated by Catherine Winkworth, 1829-1878

1. Praise to the Lord, the Almighty, the King of creation!
O my soul, praise Him, for He is Thy Health and Salvation!
Join the full throng:
Wake, harp and psalter and song;
Sound forth in glad adoration!

2. Praise to the Lord, who o'er all things so wondrously reigneth,
Who, as on wings of an eagle, uplifteth, sustaineth.
Hast thou not seen
How thy desires all have been
Granted in what He ordaineth?

3. Praise to the Lord, who hath fearfully, wondrously, made thee;
Health hath vouchsafed and, when heedlessly falling, hath stayed thee.
What need or grief
Ever hath failed of relief?--
Wings of His mercy did shade thee.

4. Praise to the Lord, who doth prosper thy work and defend thee,
Who from the heavens the streams of His mercy doth send thee.
Ponder anew
What the Almighty can do,
Who with His love doth befriend thee.

5. Praise to the Lord! Oh, let all that is in me adore Him!
All that hath life and breath, come now with praises before Him!
Let the Amen
Sound from His people again;
Gladly for aye we adore Him.

Anyway, today is just a quick update on where things stand. I am home now, and lovin' it. Gary has grown up SO much. It's been great to spend time with him again. My sisters are still here helping because I'm under a lot of restrictions. I can't clean, for one thing, which is really frustrating. Apparently dust is a really bad thing. I have a special industrial strength mask I have to wear whenever I'm out, or around dust, so anyway, they will probably still be here helping me for a while even though I feel stronger everyday. I am still weak and tire easily, but my energy level is night and day compared to other returns from the hospital.

I'll be doing my bloodwork tomorrow at Ellis Fischel, as originally planned, and then I have an apppointment at Barnes on Friday. We'll probably be at Barnes once a week for a while, just so they can keep a close eye on things like signs of GVHD. We can handle that though. It's definitely worth it to be home. Otherwise life will be rather confined for a while as my immune system builds. I have to be especially careful due to cold/flu season, so I won't be out and about much at all. Even a slight fever means a return to the hospital, and I am praying that won't happen.

Please just continue to pray for strength and health, and that GVHD won't be a problem. A little bit of it is an o.k. thing, but our prayer is that the Lord will protect from the serious stuff. Also, I will most likely have a bone marrow biopsy done next week. I know I mentioned it once, but I am struggling with anxiety over going through the procedure yet again, even though the results are so important to know. I wish my brain could forget the pain, but alas...I remember all too well.

I'm thankful for all of you -- I was thinking today about all of the encouragement you have given, and the blessing of some amazing doctors and nurses that the Lord has allowed me to work with. Truly, I feel most blessed.

Monday, December 04, 2006


I think I will be going home today, and by home, I mean home. I'm very happy about this. We made an appeal to my doctor after we found out that most of the multiple visits per week were for blood work. It looks like I'll be able to have my blood work done at Ellis Fischel, and then come to Barnes once a week or so for a while to meet with my doctors here. I don't know exact plans yet, but I love the glimmer of hope.

I apologize for the lack of updates recently. At first it was due to not having access to a laptop (I've used my husband's work laptop until now) but I was blessed by one of my former pastors who put together a laptop for me to use. I am incredibly grateful to him for his kindness and all the ways he has impacted my life over the years.

The days after a transplant become rather monotonous, which is another reason I haven't written much. It's just all a waiting game. Waiting for counts to rise...waiting for any signs of a problem. Trying to rebuild That is mostly what life has been like. I've lost a tremendous amount of weight, so a major focus right now is on trying to consume enough protein and calories to begin to regain what was lost. Eating isn't always easy. I don't know if it is lingering effects of the chemo, drug side effects, or what, but most of the time I have to force myself to eat, and that's probably been one of the hardest parts of all this.

Thank you all for your prayers. So far the Lord has been merciful to me, and I pray I am "healed" of this disease, as much as is possible. I'll be having a bone marrow biopsy within the next few weeks and I'm anxious to know the results, though dreading the procedure.

For the basket filled with special little surprises, the CDs and books, the cards, the e-mails -- all the things you do to serve me, I thank you. Blessings, Amy