Barnes appointment & upcoming treatment plan

Yesterday was our trip to Barnes -- the Siteman Cancer Center, specifically. We got there about an hour early for labs and then met with Dr. Westervelt. The appointment was very informative. I was told that they do not actually know yet if I am in remission. The doctor implied that it is probably a safe assumption given that I am feeling better and my blood work looked pretty good yesterday, but he said they will need to do one more bone marrow biopsy to verify. Basically he said the previous biopsy was 100% clear meaning it showed nothing. They consider you to be in remission when they see normal cells and few or no leukemic cells. (I'm probably over-simplifying, but I believe that is basically correct.) He does not feel a bone marrow transplant (hereafter BMT) is necessary at this time. He said they have about a 30% chance of controlling the disease with chemo, and at this time that is a better outlook than doing a BMT. It is possible that we could look back down the road and say that a BMT now would have been the best route, but I feel God is sovereign over that as well, and trust the doctors He has given me and their opinions on the matter. I was somewhat discouraged to learn that I am facing more chemo. I admit I had gotten it into my head that I was done for now, and facing high dose Ara-C is really overwhelming. (Also known as Citaraban, which was one of the chemo drugs I had with induction therapy.) The same side effects apply, and my immune system will bottom out again, so the same possibilities for infection and just everything all over again basically. At this time I do not know the schedule for all of this. Dr. Westervelt said if I were having the treatment done at Barnes they would probably do outpatient -- six treatments every other day. He wasn't sure if the MU hospital would do the treatment inpatient or outpatient, so I have yet to learn more about that. I'm actually hoping it will be inpatient. If for no other reason than getting to see my nurses again, who feel like my long-lost friends! Dr. Westervelt will be calling Dr. Perry and giving him all of this information and we will proceed from there. I will probably contact Ellis Fischel on Monday or Tuesday to see about an appointment if I don't hear from them first. At this time I fully expect a biopsy again within a few weeks and for consolidation to start rather soon as well. But, I honestly don't know.

I think the hardest part about yesterday was just being faced with the solemnity of this disease. There is no happy, there is no cure. Even a BMT allows about a 25% relapse rate, and the potential for poor quality of life after a transplant causes us to wonder if it is truly worth it. Plus, there's a 25% mortality rate, so there are serious risks involved. For now, if I am not in remission we will work to get me into remission and then go straight to a transplant. Otherwise we will reserve a transplant for second remission if I were to relapse, which statistically is more likely than not. My parents were able to go to the appointment with us -- my aunt watched Gary in the waiting area for us. My dad commented something about it being nice that I was finally feeling well enough to be able to participate in the appointment, but at the same time it was like, wow, I'm finally feeling well enough to participate, meaning everything is really just starting to hit me, and I'm coming out of survival mode and realizing how majorly serious this all is. I am thankful that for now, most likely, I won't be facing a transplant. We're going to hold off testing my siblings for now as well. Each one has a 1 in 4 chance of being a match, so statistically I should have a sibling match. Thanks to an e-mail from a pathologist who has been reading my blog, we were able to clarify the information we had been giving regarding my cytogenics. As a result the doctor ordered an additional test (FLT-3) that can give us further information regarding my risk for relapse. We were very grateful for the information that allowed us to ask further questions and obtain more knowledge about my disease. The doctor also verified that I have subtype M4 with normal chromosomes, which we weren't sure about previously.

With each discouraging day it seems the Lord is great to bless us with encouragement. We found out yesterday that someone has arranged for a month of meals for us through Super Suppers. (www.supersuppers.com) One of the local employees, possibly even the owner I guess, just stopped by with a few entrees and an edible bouquet of chocolate covered strawberries. This is just one of the anonymous gifts we have received. Being unable to thank all of you personally, please know the extent of our gratitude. We have truly been overwhelmed by the generosity and love shown to us by so many, even so many of you that we have never met. We are also exceedingly grateful for the prayers offered on our behalf. My husband keeps reminding me not to get caught up in the statistics and lose hope, God is still in control, and He still knows my days. I want to be able to focus on His blessings, and the beauty of each new day, and not so much on the fact that my days on earth may be much more limited than I ever expected and that my plans are not His. I am so grateful for every minute I have with my husband and baby. Brandon is home this weekend, his first weekend off in about six weeks, and it is just wonderful to be together as a family. Gary is doing really well. I've seen him take a few steps now. His balance is improving everyday and he thinks he's big stuff when he stands up in the middle of the room and takes a step or two before plopping down. He crawls like lightning and gets into everything, so he keeps his momma busy. I love it though, and have been grateful for renewed energy everyday. It gives me hope that I can make it through this next round and hopefully be back to this point before the holidays. It is a long, hard journey. I think often of Pilgrim's Progress, and I told mom today that I dread walking back through the Valley of Despair, but there is a place of rest as well, and I know God goes with me through it all. I spent some time wallowing in misery the other night asking "Why me?" and Brandon replied, "Why not you?" The saying, "There, but for the grace of God, go I" came to mind. We talked for quite a while and just once again remembered that this is my path -- our path -- and that there is grace for it. I am thankful to the Lord for the gift of faith, because without it I don't think I would have made it this far.

I'll update again once I meet with my doctor here and have more information on the upcoming treatment. Once again, thank you all for your prayers and encouragement!

Home & Barnes

I finally have enough energy today to attempt a post. I don't know why, but being home leaves one feeling much more drained than being in the hospital, I guess it's just the environment. Coming home after such an extensive stay was somewhat traumatic. As much as I longed to be home and have a night of sleep in my own bed with my family, no 4 a.m. vital checks and blood draws, I actually told my husband Tuesday morning in the midst of my tears that I wanted to go back to the hospital because "it was easier and food just appeared and everyone just took care of me." Not that I am not being cared for at home...my sisters have stayed to help me care for Gary. Brandon has been back to work -- throughout all of this he has not missed a day. Not that he's a workaholic, he's new to his job and doesn't have any sick or vacation leave until he's been employed for six months. God has blessed and worked it out so that every day I have needed him (bone marrow biopsies, leaving the hospital, etc) has been a scheduled day off due to working several weekends lately. He's leaving tomorrow for a four day business trip and I'm finding the idea of coping without him quite difficult, but my mom is coming to help care for me, so we'll make it. Thankfully this has been the first job in which insurance has been effective from day one. God certainly went ahead for us in that regard, and provided us with some excellent coverage to boot, though a nurse from the insurance company called today to remind me of my two million dollar lifetime limit which I suppose I am somewhat quickly approaching. She was calling regarding a bone marrow transplant specifically, and I found out a little more about what costs are involved with those.

I have never been so wiped out in my life. I couldn't walk for days after my baby was born, and thought that was the most wiped out I would ever be, but this has brought me to the utter and complete end of self. I spent the first few days home crying and blubbering like a baby, having a total and complete pity party. I found myself dealing with everything I'd just been putting off for six weeks. My husband reminded me that I was also void of all emotion-suppressing drugs, so I guess it just all caught up with me. They took me off all meds the weekend I left, and sent me home with absolutely nothing. I've found that waking up every day can be misery if I focus on all I am not, all that I used to be, and the fact that my baby doesn't know me as mother anymore, etc, but I can also focus on the fact that I am alive, that six weeks ago we didn't know if I would be, that my baby has the chance to get to know me again, that I am not just a name he is told about someday. So the past few days have been full of lessons for me, as I learn once again to praise my God for the gifts, not blame Him for what I feel are the losses. Once again I have to realize that it's one day at a time, that I'm right where I'm supposed to be, that He is sovereign and I'm not going anywhere until He is done with me. I should think by now that I could live without fear, having stared death in the face more than once, but still I have to give my fears to Him daily.

Especially hard right now is the unknown in my near future. I have an appointment with Barnes in St. Louis next Friday at 1:30 p.m. with their transplant team. My oncologist went from saying one day that he's pretty sure they will just tell me to go home and live my life to "you're 25, and it would be a cure, you might as well." I also have no idea what is in my future if I don't have a transplant and just have follow-up care. No one has told me if I'll have consolidation chemo treatments. I think overall they are just not quite sure what to do with me yet. I'm 25 and have AML. People my age don't get AML to begin with. I have yet to hear of anyone who is 100% clear after two chemo treatments. That just doesn't happen. My doctors have never come out and said I'm a miracle, but when I have commented on the number of people praying for me they have said, "Well, obviously prayer works." So I am unusual, I am a sign of God's hand -- the result of your prayers. I am learning once again to just trust my Savior.

It is my goal to write everyone once I being feeling stronger. I have so much I want to say, so many thanks to give to all of you. By the way, we're not entirely sure what is happening with the mail I was receiving from the hospital. My husband stopped by the mail room and talked to them one day (one clerk told him in 24 years they have never known anyone to receive so much mail and I had my own bucket in the mail room). He was told that all my mail would be returned to sender, but I have received several forwarded letters. I think any packages that I was aware of were received prior to my leaving, for those of you who may be wondering. A thousand thanks to you and I intend a more personal note soon. How you have all blessed my heart!

Prayer requests at this time would be for health. I have the immune system of a newborn, basically, and still need to stay away from sick people, crowds, etc. Also that the Lord would prepare us for our appointment with Barnes and the information we will be given there. Thank you all!

Home at Last!

This is Brandon once again writing on behalf of Amy. She is now home. Though she is very tired and worn out still. She is home. All of us are very grateful for her being back home, but realize it is still a long road to go. We have a follow up/2nd opinion consultation with Barnes in St. Louis sometime next week, and then will have another follow up with the doctors back here at Ellis Fischel. Amy will post an update in the next couple of days on how she's doing, and we will, of course, post updates after the consultation at Barnes and the follow up here. We are working with the hospital to make sure we get our mail so that any cards or leters still sent to the hospital before the good news came, can still get to her. 6 weeks in the hospital have left her very weak physically and very tired.

Thank you so much for your continued prayers! We, she especially, appreciate them very very much.

Homeward Bound

Wonderful news today -- my white count is up to 6200 and my neutrophils jumped to 2910! My iron and platelets are also climbing on their own, so no transfusions. The doctor came in to tell me while I was napping and said she thought it was worth waking me up. I agreed. They are in the process of removing my antibiotics. I'll go home with two of them, so they're changing from IV to oral. Dr. Papageorgio said this morning that he expects me to go home on Monday, possibly Tuesday morning. I'm rooting for Monday, and I'm stopping at Outback on the way home for a salad to go! :-)

Dr. Papageorgio also said he plans to refer me to the transplant team at Barnes in St. Louis to consult with them regarding a bone marrow transplant. He expects they will tell me to just go home and enjoy life, because I'm in the moderate risk group for relapse. Statistically my chances of relapse are less than the chances of dying from a transplant. It's something we're praying about, and right now we're not wanting to do a transplant, so I trust the Lord's leading in the matter, just as He has gone before us in every other step of this journey.

I think they're going to leave my Hickman catheter in place until the consult, just in case, but that should be within the next week or so. Assuming they tell me I'm not a candidate for transplant, I'll come back in for outpatient surgery to have the catheter removed. I admit I'd prefer not to take it home with me, because I always worry about Gary pulling on it or snagging it on something. Plus, I'll need to take care of the bandage and flushing the lines myself, and it kind of grosses me out. But, that's life, and I know I'll have help with it if I need it. (It's located below my collarbone on my right side in case I've failed to mention.) Several of the nurses have asked me if I'll go to nursing school after all this, but there's no way. I respect them greatly, but could never do their job. I don't have the stomach for it at all. It's challenging enough making it through IVs, blood draws, shots, and everything else I've had in the last 6 weeks. I've had my fill of it!

The nicest thing about being out of neutropenic stage is that I can finally kiss my husband again. Unfortunately he's on a business trip right now, but I'm looking forward to having him home. Gary was in today and I gave him ever so many kisses. It's a nice feeling to not be terrified of touching another person.

So today has just been full of praises that my counts are going up, and that the doctors are so optimistic about things. I'll be seeing the oncologist often for check-ups, but they aren't planning any follow-up consolidation (chemo) treatments since I'm 100% clear, so that is a praise as well. I am just amazed and astounded at God's work in my life, our lives, and it has been a wondrous thing to see His answers to the prayers of thousands on my behalf. I don't know what the next few years will bring, but I know God does, and that gives me peace. I do know that I value every day now in a way I never did before, and I have come to realize how utterly dependent we are upon the Lord, and how He sustains each of us daily. We are truly fearfully and wonderfully made -- I have witnessed the horrors a single cell change can cause.

"But for me it is good to be near God; I have made the Lord God my refuge, that I may tell of all Your works." Psalm 73:4

Climbing higher

Good news today -- my white count is at 2500, neutrophils at 620. That means I'm no longer neutropenic, but they still won't let me have a salad. My iron and platelets are still on the low side, so there's a possibility I'll need a transfusion sometime this weekend. So far I've made it over 24 hours without a fever, so they are going to start removing some of my meds to see what happens. They're starting with the one that affects my vision, so I'm really happy about that.

I asked the doctor if he could give me a ballpark idea of when I can go home, and he said possibly as early as the 15th of this month. They are going to continue the Neupogen shots since they appear to be helping. So my prayer requests specifically today are that I will remain free of the fevers, that my counts will continue to rise, and that I can go home next week. It's a little scary to let go of the antibiotics -- kind of like losing my training wheels or something. But I know that God is the one who has kept me alive up to this point, and that He will continue to do so until He is finished with me. Thank you all so much for your prayers.

41 Days

I just noticed this evening that this is my 41st day in the hospital. No wonder I'm sick of cafeteria food! :-)

Since I last wrote I've had another CT scan and chest x-rays, all of which came back clear. I've ben running a high fever off and on and the doctors are thinking it may be caused by one of the antibiotics I'm on. They haven't removed any of them, though, because they want my white count to be a little higher before they start pulling the safety net. Yesterday was probably the worst day. My fever spiked to 41.7 C by ear, and 40.8 C by mouth. (Read close to 107/104) I think I was delirious part of the day, because I don't remember much. I don't even remember going down for the CT scan. When I woke up after a nap around 7 p.m., Brandon and my parents were here with Gary. (The doctor approved a 20 minute -- no drool or kisses -- visit.) I kept asking Brandon and my dad why they weren't going to work, and they kept telling me it was evening, but then I would forget and ask again. I was just so confused. My cognitive abilities are really poor right now, and I'm having a hard time remembering things. Some days I think it is due to the fever, and some days I wonder if it's a side effect of the chemo or one of the meds I'm on. They have given me Ativan some days, and that can cause some confusion and short term memory loss. I'm also on a new preventitive anti-fungal med that is causing a lot of vision problems. Lights and things like TV or computer screens just seem really bright to me and I catch myself squinting a lot. Reading is difficult as well. Everything blurs. I'm even more grateful now for sites like oneplace.com and enjoyed listening to a sermon by C.H. Spurgeon. I think I fell asleep about halfway through, but what I heard was really good.

I received platelets again yesterday and had a reaction. It may have been responsible for the high fever. I've been running fevers for about a week now, but yesterday was by far the worst. I think I am going to ask them to pre-med with a small dose of Benadryl next time, or some other kind of antihistamine. My iron count is starting to climb on its own and my white count was 1300, up from 600 yesterday. My neutrophils are up to 300, which is great. They need to be at least 1000 before I can go home. I'm still getting a daily shot of Neupogen and apparently it's working. So I am praising God for causing my blood to rebuild, and no fevers today. My main complaints at present are side effects of meds I'm on, so I look forward to the day when we can start removing those and I can go home.

As always, thank you for your prayers on my behalf!

MRI & Transfusion

Thank you all so much for praying for me over the past few days, especially relating to the MRI. I was really nervous about it, but ended up having a lot of peace and it was over before I knew it. (I think the Ativan helped as well.) They let me see the scans afterwards which I found very interesting. The results were back this morning and everything is normal. They have been trying to find the source of my fevers, and the main reason they ordered the MRI was to check once again for fungus.

I received two units of blood yesterday, so my energy is up today. It's all relative -- I'm still really weak and tired. This past week has been harder on me than the second round of chemo was. I am still receiving Neupogen shots to help my bone marrow rebuild, and today it showed signs of working -- my white count is at 500. I think the doctor said that's the first time it's been 500 (or above) since July 27th. So that's a big praise -- things are heading in the right direction. My neutrophils are still at zero, so they are still restricting visitors and I can't see Gary. I miss the little guy. The kids (my siblings) and Brandon taped about a half hour of footage on our camcorder, so that was fun to watch this morning.

I remembered a few days ago that I could listen to Scripture at Oneplace.com. They have selections from the KJV, and since I've been too sick to read, it's been very relaxing to me to just listen. I also discovered they have old sermons by Charles Spurgeon, among others. I find his writings very encouraging, so having the opportunity to listen to some of his sermons is a blessing.

The first book I listened to was Hebrews. The following caught my ear especially:
"For the word of God is living and active, sharper than any two-edged sword, piercing to the division of soul and of spirit, of joints and marrow, and discerning the thoughts and intentions of the heart. And no creature is hidden from his sight, but all are nailed and exposed to the eyes of him to whom we must give account. Since then we have a great high priest who has passed through the heavens, Jesus, the Son of God, let us hold fast our confession. For we do not have a high priest who is unable to sympathize with our weaknesses, but one who in every respect has been tempted as we are, yet without sin. Let us then with confidence draw near to the throne of grace, that we may receive mercy and grace to help in time of need." -- Hebrews 4:12-16

I found Hebrews to be fascinating. I've been thinking a lot about the people of the Old Testament whose names are mentioned in Hebrews 11. Such incredible faith, and they did not even know about Jesus Christ -- they only had the promise, and they held tight to that. My faith is so weak, but thankfully His grace is that much stronger.

Monday Night

Again this is Brandon posting on Amy's behalf. She asked me to post to let everyone know that she will be undergoing an MRI tonight. She asked if you could all pray for her to have peace and that God would calm her nerves.

Thank you,
Brandon

Monday

This is Brandon, posting for Amy since she is too tired and weak to do so herself right now. Since I don't type even half as fast as she does, this will be a significantly shorter posting than you all are used to. Her white blood count has been holding steady for the last several days at between three and four hundred, her hemoglobin is down to 6.7 and her platelets to 28. She will most likely be getting a blood transfusion, and possibly platelets again, today, though it may end up being tomorrow as they are being extra careful to make sure they have an exact match now. With the low hemoglobin count she has just been extremely physically weak and tired the last couple of days. She has also had more fevers, mostly low, but yesterday had several high fevers (depending on whether you go by ear or mouth they were either 104.5-104.9 or 102.2-103.1, respectively) and has had a hard time keeping food down both yesterday and the day before.

Everyone's comments and emails are very encouraging for her and she wants me to make sure I thank everyone for her. So, thank you. Thank you also for your prayers -- knowing that people are praying for her is the biggest encouragement for her. She has continued to receive ever so many cards (her count now is up around 300) and each one blesses her so. There are so many of you that have written such touching messages and emails that she wants to reply to, but just hasn't had the energy to do so, so know that she is encouraged and thankful for your kind and caring words. There are also several of you going through your own trials (health, familial, life, etc...) that she has been keeping in her own prayers and I just wanted to try to encourage you by letting you know that she thinks of you often.

Once she gets the transfusion she should have some more energy and will likely post an update of her own, but in the meantime if you could continue to pray for her, specifically that she'll get past these fevers and that her white blood count will start to climb, we would both be very grateful. Thank you all so much for your love and kindness.

Friday Update

The doctor said today that I am only allowed visits with my caregiver (Mom or Brandon), so I won't be able to see Gary for a few days. I haven't seen him since Tuesday, so I am sad about that, although at the same time I would be too tired to really visit with him anyway. We had a really fun visit with him on Tuesday night. At first I had a hat on and he didn't seem to like it one little bit, but once I took it off he grinned and squealed and proceeded to pat and kiss my bald head. He seems to really like it.

My white count dropped, which concerns them, and he wants to be especially cautious for a few days until he sees it begin to climb again. (400 yesterday, 300 today, just fyi) They just gave me a shot of Neupogen, which is supposed to stimulate my marrow to make blood faster. Ouch. It causes pretty serious bone pain, but he said they will give me pain meds if I want. He also emphasized the importance of resting. I've been using meds to help me sleep at night for the last several days. As my iron drops it's easier and easier to just sleep all day. Maybe that's the best thing for right now, though.

I have still been running fevers off and on. I remember a woman who had cancer when I was young commenting about the "shake and bake" she went through. I understand exactly what she meant now.

The platelets, which were due yesterday afternoon, just now showed up. My platelet count dropped down to 7 this morning and I have petechiae all over my body again. They've had to draw a lot of blood lately, and my iron count is down to 8.1. (When I run fevers they culture blood from my arm and blood from my Hickman catheter). I've got a couple of blown veins in my arms now. Hopefully they won't run out of places to stick.


----
Well this day's been crazy but everything's happened on schedule
From the rain and the cold to the drink that I spilled on my shirt
'Cause You knew how You'd save me before I fell dead in the garden
And You knew this day long before You made me out of dirt

And You know the plan You have for me
And You can't plan the ends and not plan the means
And so I suppose I just need some peace
To get me to sleep

- Table for Two, Caedmon's Call

Thank you again for all your prayers! We realized a few days ago that we have heard from every continent. I can't explain what an amazing, humbling thing it is to know that people are praying for me all over the world.

The last few days

My husband encouraged me to update my blog. I've been fighting fevers since Monday, and dealing with a plummeting iron level as well, so my energy is pretty much zapped. Tuesday's CT Scan went fine. The tech let me see some of the pictures on her screen afterwards which I thought was really neat. The doctors told me the next morning that everything looked normal. No mushrooms growing in my cheekbones or anything like that. It was comforting to me to have the scan because it's easy to wonder when you have cancer in your blood if it truly hasn't affected any organs. They are still adding an anti-fungal drug to my long list of meds. They warned me about color changes and seeing colored circles, etc. Another side effect is seeing things that aren't there. That hit last night while mom was here with me. She was on the laptop and I kept asking her if she could see the man moving on the screen -- looked like a commercial running under the main screen she was viewing. I also started in with some rather violent teeth chattering and muscle spasms that lasted about 15 minutes -- until they administered Ativan. I've had the same dosage again today and so far all I've had are some color vision changes. Keeps things interesting, I guess.

For now my team is concentrating on getting me healthy. They haven't been able to figure out a cause for the fever. Other than a bit of a sore throat I really don't have any symptoms. They've drawn tons of blood this week for cultures but last I heard nothing was growing, so they don't know what it is. The fevers really wipe me out. I am anxious for them to end. My white count was holding steady today. It has quite a way to go before I can be allowed to go home. At that point we'll begin consolidation treatments and I don't know anything about those yet. They may be outpatient at Ellis Fischel or inpatient here at the University Hospital. I'm expecting some type of chemo, and I think the verdict is still out on a possible (sibling match) bone marrow transplant. Needless to say, the road is far from over. It's a difficult thing emotionally to hear "remission" and have so much joy with that, and yet realize there is still so much more really hard stuff to make it through. I'm beginning to read a little more about chemo side effects as well, and sometimes that can be discouraging. I told Brandon today that I need to be careful because I know my iron count is dropping (8 something today) and Dr. Papageorgio said he doesn't like to transfuse people my age, especially ones who are BMT candidates, so he won't unless my iron gets dangerously low, to quote, "Like a 5." I haven't been that low and really don't want to. The low iron makes me so tired and weary, and everything seems like too much, and I end up feeling tired and depressed. I don't want to get stuck there. I just need to still be able to remember to praise Him even if the days seem really dark.

I am also beginning to ponder some of the long term effects all of this will have on our lives. Chemo induces menopause in the large majority of women, and it can be temporary or permanent. I was told at the beginning of all of this that I will probably be infertile. I have heard of women who have made it through cancer and have gone on to have many children, so I know that can happen as well. It's just a hard kind of waiting game to see which catagory you fall into. At this time the doctors don't think that I'm menopausal, though I do seem to have a lot of the symptoms. I told mom today that sometimes I sit here and think, "Why didn't I get pregnant as soon as we got married? We could have 2 or 3 kids already." Or the reverse side, mourning the children I planned, but may never be able, to have. But then I realized that there isn't a child there to mourn if I'm infertile. God's sovereign over all -- family size included, and if our quiver is full with one, then that is all it was ever meant to hold, and praise Him for it. We didn't lose any along the way. I find comfort in that. These are the sorts of things that are going to be the hardest part of this journey, I think. The emotional and spiritual.

I've been spending this week praying for those of you who have written me and are going through similar sufferings. I know some of you have had bad test results this week, some yet to be determined. My heart aches for you and I want you to know you are being brought before the throne. I know His grace will be sufficient for you as it has been for me. Even when we don't really see it. My husband keeps reminding me to take it a day at a time.

A friend who attended Gary's birth shared from Matthew 6 in an e-mail to me recently. It has been going over and over through my mind.

"And which of you by being anxious can add a single hour to his span of life? Therefore do not be anxious about tomorrow, for tomorrow will be anxious for itself. Sufficient for the day is its own trouble." Matthew 6:27,34

It's very, very easy to sit and play the mindgames with the statistics the doctors give you. It is so overwhelming to try to decided if this risk is worth that risk or maybe even a completely different risk. I start trying to figure out what's going to be happening down the road with my treatment, etc, and I think I need it yelled to me everyday to just take it one day at a time. I am hoping once I begin consolidation I can work with Dr. Perry again. He came by yesterday to see me and asked if I'd heard the news of my biopsy. I said yes, and that I wish they had let him tell me since he had to tell me all the bad news -- it only seemed right. He said the report had come across his desk that morning and he wanted to come see me in person. I'm so glad he did, because I so wanted to thank him. As he left he reached over, said, "You did good, kiddo" and gave me a "germ free kiss" on the top of my bald head. I was left in tears -- so grateful for this man whose skill and knowledge has allowed me to be sitting here today sharing with you. I told mom that they have truly been ministers of God for good in my life, and I have been so thankful for each and every one of my doctors, and their dedication.

I am supposed to receive platelets today. They have had a hard time locating them, because the Doctor wants them to be my exact (rare) type. I was just updated that they will be here around 4 a.m. I am expecting my iron to possibly be low eights or even seven tomorrow, so if you don't hear from me for a few days, it is because I am bone weary. One of my dear friends told me I've fought hard, and now is the time to rest. So tonight I pray for rest, and for all of you.

The Results

The doctors came by for morning rounds and told me they didn't have results yet, and that the pathologist had said it will be tomorrow morning. In the meantime, they've decided to schedule me for a CT scan to see if they can find a reason for the fever I've been running off and on for the past two days.

A few minutes ago Dr. Medlin walked in, looked at me and said, "Your results are in. There's no sign of leukemia. You're completely clear." It was one of those moments where your life changes in a sentence. I just started crying and asked him, "So you mean I'm in remission?" "Yes, you're in remission!" I cannot, cannot express to you the joy we are feeling. I don't think we've stopped crying yet. God is so good to me! Truly He knows the plans He has for me, for us. Thank you, THANK YOU, for your prayers. God is the ultimate healer, and I give Him all the glory.

For now I will remain in the hospital because I am still neutropenic. The doctor said to expect to be here for at least two more weeks. In the meantime they will do everything in their power to keep me healthy. The doctor expressed to me that having a clear biopsy is kind of just the first step in a process. I'm not completely "out of the woods" so to speak, because an illness at this point could be deadly. The CT scan is going to specifically check for fungal growth in my body, and they will probably add an anti-fungal medication to the antibiotics I'm already receiving. AML also has a very high recurrence rate, so it will years of monitoring, as well as follow-up treatments. If I am able to stay cancer free for five years they will consider me as close to cured as possible.

"Then Job answered the Lord and said: I know that you can do all things, and that no purpose of yours can be thwarted." Job 42:1-2

Shout it from the housetops -- to God all praise and glory!

Bone Marrow Biopsy #3

First, thank you for all of your prayers on my behalf.

The biopsy went o.k. Can't say that it was any better or worse than the previous ones. At the last minute they decided to use Versed, which is a type of conscious sedation, and told me I would sleep through the whole procedure and wouldn't feel or remember a thing. I was fine with that, because I very much remember the last one and didn't want to repeat the experience. Apparently Versed doesn't work for me, though, because after 6 mg I never did fall asleep, and was alert and quite aware of everything. The doctor was quick and only had to do one side, so the pain wasn't as bad as last time. As long as the results are conclusive one way or the other this should be the last one for a while at least.

My new doctor, Dr. Medlin, just popped in to see how I'm doing. He said he's very optimistic about the results, and will let me know as soon as he hears from the pathologist. It will most likely be Wednesday morning, but I will update as soon as we hear. By the way, I miss Dr. Perry, but my new team is really great. It's hard to lose your "safety net" but I'm glad to have Dr. Medlin. He's got a great bedside manner and is wonderful to explain things to me.

Thank you for all of your encouragement over the past day, especially. You are all such an incredible blessing to me!

Sunday

I thought I would try to write a quick (short) update today, but knowing me it will probably get long. The weekend has been uneventful for the most part. I did receive more platelets today, and thankfully no reaction. For some reason they didn't hold this time like they usually do. My bloodwork came back looking really odd this morning, but it turned out to be an error. Something isn't right when your iron count drops almost three points overnight! I was happy to hear it's still up over 11. I've had more energy as a result, though I have been battling my attitude this weekend. I'm scared, and I'm depressed, and I know -- oh how I know -- that I need to just trust the Lord but it has been a constant battle for me the past few days. I did finally ask for meds to help me sleep last night after one of the doctors told me it was ridiculous that I wasn't sleeping at night. I've been having horrible night sweats and we weren't sure why. My husband stayed up after I fell asleep the other night and said I started having nightmares, and woke up soaked, so apparently that has been the cause. I haven't remembered anything, just wake up exhausted everyday. I slept well last night, and I've been resting a lot during the day to try to catch up from weeks without restful sleep.

My baby took his first steps on Friday and had his 8 month birthday yesterday. Our camera stopped working the other day, or else I would have some pictures to post. I was really hoping to make it home so I could see his first steps, and it hit me really hard when I missed them. Now I just want to make it home to see him run. Sometimes I think missing out on being his mom is the hardest part of all of this. Sometimes the emotions are really, really hard. I keep telling myself over and over that I'm right where God wants me right now, even if I don't know why. I found out yesterday that one of the patients on the floor who had leukemia died recently. I never met her, but she heard Gary jabbering during one of his visits here and asked one of the nurses about him and some of my family ended up taking him in to visit her. The nurse said she wanted me to know how happy she was to see him, and how much it brightened her day. It helped to know that maybe that was just one reason I'm here, that maybe God used this to cheer one person up one day who really needed it.

I know this won't be my most upbeat post, but if nothing else I want to be real through all of this. I do have bad days, I do throw things, I do sit here and wonder just exactly when my life got so messed up, and why I have to deal with things like wondering if I'll get to be here for Christmas this year or if I should start writing letters to my son so he'll have something to read when he's older and I'm gone. But I want you to know that God is good, and He is teaching me so much, and your prayers for me bless my spirit. Please, please, don't stop praying for me. When I was so sick with the first round of chemo I would look at my mom and sob and plead with her that people were really praying, that I wasn't just some name on a list that people saw in the bulletin and then forgot about. I HAD to know that people were praying, and I know that you are. You tell me everyday. I don't know how to thank you for the outpouring of prayer and love you have shown us.

Biopsy is at 1 p.m. tomorrow -- they are going to use a type of synthetic morphine to aid in pain relief.

28 Days

It's Friday again! I decided a few days ago that you know you've been in the hospital too long when you open your second family size package of toilet paper. :-) Hopefully I'll make it out of here before the third.

This week of waiting has managed to pass rather quickly. My family has been kind to visit frequently and help keep me entertained. Wednesday we celebrated our third wedding anniversary. My husband ordered Outback to go and we actually had a really nice dinner here in my room. I had a migraine but apparently I'm in the right place for those, because they were quick to give me Darvocet and anti-nausea meds and I spent the entire day feeling quite mellow. Last week I spent an evening pouting when I realized I wouldn't get to celebrate my anniversary the way I wanted to -- I had been so determined to make this year special -- but you have all helped to give me a lot of perspective. I ended up focusing on being thankful that I'm able to celebrate this anniversary, which is a gift in and of itself, and that I have my spouse by my side. I spent the day praying for all of you whose spouses are overseas serving our country. Such a sacrifice you are asked to make everyday.

Yesterday I received platelets, and had a slight reaction to them. Thankfully nothing major, but it shook me up quite a bit and made me nervous about today's blood transfusion. It's been going for about an hour now, and so far so good. I'm thankful for yet another evidence of God's mercies. My doctor said this morning that hopefully yesterday was the last time I will need platelets. He is very optimistic, which he said is a good thing because oncology isn't a field for pessimists. I am really excited to find out my results next week. I know that there will be grace for the outcome, and God has given so much peace.

I've had three mail deliveries so far today! I'm starting to receive so many cards from those of you I have never met. How you bless my heart! I just sit here and cry with each one. Know that you encourage my family as well, and that you are giving me so many opportunities to share my testimony with the staff. One of the nurses said we're going to have to start hanging them on the ceiling.

I'll end with a song that has often been on my heart and tongue:

Thy mercy, my god is the theme of my song
The joy of my heart and the boast of my tongue
Thy free grace alone from the first to the last
Hath won my affection and bound my soul fast

Without thy sweet mercy I could not live here
Sin would reduce me to utter despair
But through thy free goodness my spirit's revived
And he that first made me still keeps me alive

- John Stocker

Tuesday

I finished the second round of chemo yesterday afternoon around 1 p.m. That was a great feeling. For now we are just waiting. My next biopsy will be Monday, July 31st. I'm not sure of the exact time yet. It will take a day or two to receive the results, and there's the same possible outcomes as last time. I'm praying for an answer one way or the other. Indecisive results that mean a repeat biopsy another week out aren't really what any of us want.

The doctor seemed really positive this morning. I asked a few questions about what various results could mean. They aren't able to tell me a whole lot yet. If I'm in remission, I'll be able to go home once my counts are up and begin consolidation treatments (outpatient). I don't know how long that will take, though, and they told me it varies by person. My counts are still looking o.k. today so no transfusions until Thursday or so. That's a huge praise. I'm still being told that I'm receiving way less transfusions than normal. They are going to continue my antibiotics for now. I am so thankful for the health I've had thus far. I've actually managed to put on 8 pounds over the past week -- while on chemo! God be praised. My nursing care has been excellent, too. Everyone is taking wonderful care of me.

Yesterday was eventful in that I took the plunge and had my head shaved. I was starting to look rather patchy with about a 1" part. It has taken some getting used to for sure. I still don't recognize my reflection and I am getting used to a very sensitive scalp, but overall God has been gracious and it hasn't been as difficult as I expected.

Thank you once again for all your cards and comments. I didn't sleep well last night and started in with some achiness last night, so when the mail arrived at 8:30 this morning (a very unusual occurence) I felt so loved and encouraged. God sure knows what I need and when.

A Couple of Photos

Not the most recent picture, as I've now received over 120 cards and feel very blessed. The nurses comment on how much they love to visit this room and say that some of the other patient's don't even get a single card.

Round Two -- Day Five

I began my final 24 hour dose of chemo today. I'll finish up sometime early tomorrow afternoon. The doctors told me the next biopsy will be done 14 days out from the beginning of this round, so I'm estimating that to be right around August 1st. This is the big one -- remission or Plan B being the two possible outcomes. I will be losing Dr. Perry at the end of July. Someone explained why a few weeks ago but I honestly don't remember. I think it has something to do with rotations. I am amazed at the dedication of the doctors here. Today is day 23 in the hospital for me and I have had the same doctors around my bedside every morning for daily rounds with the exception of one or two days. I wonder how they manage to have a family life and realize the dedication they have to serve their patients. I told them yesterday that I hoped they would be able to spend some time with their families this weekend, because it seems that they live here.

I have been tired today, and ran a low fever for a while this afternoon. It seems to have broken. My infectious disease doctors are recommending that I remain on the antibiotics for now. One of the nurses commented yesterday that she doesn't know how I am handling them so well. I'm on Vancomycin and Cefepime (Maxipime). I take this as another sign of God's mercies. So far they haven't managed to destroy my kidneys.

I was able to get some rest last night. Nurses are in my room at midnight, one, two-thirty, four, four-thirty, six, seven and then breakfast at seven-thirty. So much for sleeping in! The constant interrupting is difficult, as I mentioned before, but it's a gift the nights I'm able to fall back asleep quickly. I'm trying to relax, realize it's not rude to just ask people if they washed up prior to touching me, and not try to wake up so completely to be able to just observe rather than asking a simple question.

We had a little bit of excitement last night when my IV started leaking chemo drugs. I felt damp on my side and hopped up to realize it was leaking. The reaction of the staff was quite intense, and after some scurrying about one of them assured me that it wasn't the "toxic flesh eating kind." That always makes you feel so much better. They got my sheets cleaned, mopped the floor, and I took a shower. I was wondering for a moment if they were going to bring in some kind of team in hazmat gear. Thankfully the water was warm, and I found the shower quite refreshing, although messy. My hair is falling out like nobody's business, and I kind of felt like I was fighting cobwebs as I tried to wash up. The hair has been going for several days, but for those who know me, I have had so much hair to lose that I'm still not completely bald. I probably still have as much hair as a lot of people. I told the doctor this morning as I brushed out the daily bird's nest that it hasn't been as traumatic as I thought. I'm actually kind of looking forward to the end of the shedding (it really gets messy). I have some beautiful scarves, a wig on the way, and some adorable hats -- gifts from friends, some handmade with love. And through it all a husband who tells me every chance he gets how beautiful I am to him, and I see the honesty in his eyes.

This next week may prove challenging. It's still the continuous waiting game. My white cell count is still holding steady around 300. I dread the fevers, and have been so grateful for each day of health. I wrote going into this that I didn't feel strong enough to face another round, but truly, God has not given me more than I can bear, and His mercies have been exceedingly abundant. My prayer for this week would be for continued health, patience as we anticipate the next biopsy, and a peace that passeth all understanding as we battle with the unknown upcoming diagnosis.

Saturday

I've probably commented before about the hospital being different on weekends. Some aspects of less staff can be nice (less interruptions overall) but some can prove to be a trial. I had a rough night last night, and didn't get much sleep. I told Dr. Ogden (the floor resident) this morning that I feel like I must have been entered into some kind of sleep deprivation clinical trial without my knowledge. I went to bed at 10 p.m. -- early for me, and my blood transfusion set the alarm off on my IV machine around 11:30. Response times were slow, and by the time they showed up I had ripped the IV out of the machine and thrown the entire thing on the floor and managed to turn the machine off. They don't really like it when I do that. I have noticed it usually improves response times for the rest of the day. I have been so blessed to feel better through this round of chemo, but that has brought a new set of challenges as I have felt good enough to really want to go home. I talked to Dr. Perry this morning about my frustration with never getting more than 2-3 hours of uninterrupted sleep, and the pressure of being mentally alert 24 hours a day to ensure things like hand washing and proper care of my Hickman are observed by the occasional sloppy nurse. I am mentally exhausted, and emotionally worn out -- I don't feel safe taking Ativan and not being aware of my surroundings. I decided that I'd check my e-mail before morning rounds and found several encouraging e-mails that improved my mood and calmed my spirit. In the middle of the night I wonder if I will make it through all of this without going insane. Those are the dark hours, and I try to remember to praise Him even when my heart doesn't feel like it.

I was blessed this morning with a visit from two dear friends, which again proved to build me up. God knows so well what I need each day! Healthwise I am doing well, as I mentioned above and owe it all to God's mercies and your prayers. The infectious disease doctor commented today that I ran a slight fever during my transfusions yesterday (I received two units of blood and one unit of platelets). Oh, for those who have asked, my blood type is AB+. I was told yesterday that it's actually a rare blood type, so I often receive AB- or A+, or something like that. I don't pretend to understand all the complexities, but I know there is more to matching blood than just the type. The antibodies are constantly changing and my "blood band" or "sticker bracelet" as I've affectionately named it expires every 72 hours. I was able to go a week between transfusions which I think is a really good thing, and once again no allergic reactions, which is of particular importance since I'm not being pretreated with the standard dose of Benadryl.

Thank you once again for building me up daily with your prayers, comments, love gifts, and ways I may never even know. Heaven has become dearer to me through all of this, but even more so as I have the realization that I may never meet so many of you on earth but anticipate the day we are united with Christ. Please, please, if you do not have the certainty of security in Christ this day, don't let it pass by without seeking Him. That you may know Him and the power of His resurrection!

As always, I love you all.

Round Two of Chemo

I thought I would write today while I have the strength. So far the chemo side effects haven't reared their ugly heads. I have taken advantage of my anti-nausea meds a few times. I think this round will be easier in that regard since we found the one thing that works after several days of vomiting with the first round. My appetite is starting to go, but I've still been eating and drinking Boost with every meal. The doctors emphasized to me how important it is to eat as much as I can on the good days.

They will be here soon to start my pre-chemo drugs for the day. I start a 24 hour drip of chemo drugs every afternoon, and they begin each one with a cocktail of anti-nausea drugs and Ativan. (I learned how to spell it, go me!) The Ativan makes me sleepy, so I have learned to look forward to my afternoon nap. I was blessed with an excellent nurse last night and managed to get a decent night of sleep. Still not as many hours as I used to get, but an improvement. My white count is at 200 today, the lowest it has been thus far. As a result I'm keeping Gary away today, but he is in good hands. We'll see what tomorrow brings. We go through a lot of hand sanitizer around here and I have a box of masks to use. I think they are more mentally effective than anything. The doctors have said that they've found good hand washing to be the most effective thing, and of course I'm still supposed to limit visitors to as few as possible, and absolutely no one who is the slightest bit ill, or has been exposed to anything, immunized recently, etc. We decided to delay Gary's immunizations until he was a little older, and I'm so glad now because otherwise I wouldn't have been able to see him at all through any of this.

The doctor seemed most concerned today with mental aspects of my health. I think he is worried that I am never upset when he visits. He told me it is o.k. to be angry and to say it's not fair, because it isn't. They just want to be sure I have someone to vent to other than my family or nurses, because neither of them are equipped to handle that in his opinion. He wants to make sure I still have a marriage once all of this is over, things like that. I feel like I could have been a better witness while he was here, but it was early and I was weary. I didn't say much. Just as I didn't really react when he told me yesterday that I'd need another round of chemo. I just don't make eye contact because then I will lose it, and losing it doesn't make it any easier for the doctor or the daily dozen it seems who follow him around. (It is, after all, a university hospital, so I see a lot of students.) When they initially told me I had leukemia I think a few of the studends broke down more than I did. Part of that is just the numbness factor. How exactly do you wrap your head around information like that? It takes a while to hit. I have my bad days. Brandon has been there for me (I could write an entire post on the incredible husband God has given me), and my mom, but my Savior most of all. I don't really have a desire to talk to a floor chaplain or a psychiatrist. Perhaps I am still in denial, I don't really think so because I've always been a realist about everything -- I've had my funeral planned for years. But I think mostly it is just the knowledge that God's grace is sufficient for me. I have come to know Him in such a way that I am utterly certain He is near. I also know He allows anger ("be angry and sin not") and allows our cries of "Why?". He understands our weaknesses, He created us after all. He knows my heart better than I do. I hold to the verse, and I apologize for not giving any references -- I am hurrying to write this before the nurse comes to knock me out, but anyway, "I know the plans I have for you...plans to give you a future and a hope." Whether that hope is raising my son and spending many more years with my wonderful husband or spending eternity in heaven with my Lord, I don't know, but I am comforted to know that He does.

I have been receiving so many comments and e-mails from perfect strangers recently. I marvel at the fact that you take time to write someone you will never meet, this side of Heaven anyway, but oh the encouragement you give me! For those of you who have suffered a similar road, or a road so much more difficult I can not even imagine, your testimonies and continued praise to God have ministered greatly to my spirit. I hope to eventually write each of you personally, but know in the meantime that I am reading what you write, and thanking God for each of you. I think the only thing that makes all of this worthwhile is our testimony. Man's chief end is to glorify God and to enjoy Him forever. I feel so humbled that God is possibly using me to bring glory to Himself in an even greater way than most people may have. He truly uses the weakest. I have such a deeper understanding of what those before me have gone through, whether it be modern day giants of faith, or David, Job, Moses, Abraham...the list goes on.

I think I have a million people praying for me, and the hundred or so cards on my wall and multitude of daily e-mails convince me of the fact. Thank you all for interceding on my behalf!