Almost done with chemo...

Today was day four of five of the FLAG course. I'm still getting all three chemo drugs, plus two sterioids and growth factor (the "g" in flag.) Yesterday was a rough day. I had some breathing problems. We're not sure why, yet, just that I had inhilates in my lungs (i.e. fluid) and started hyperventilating for a while. That was my first experience with hyperventilation. I just felt like I couldn't get my lungs to expand at all. My ox-sat levels dropped so I spent some time on oxygen along with some Robitussin/codeine mix to help manage the cough. Once things cleared up I felt a lot better, and I've been o.k. today. We're waiting on test results on the fluid that showed up on the chest x-ray. One thing they are testing for is CMV.

My blood counts also took a pretty severe hit yesterday. My white count was down to 4.1 yesterday from 19.2 on Thursday. I got both blood and platelet transfusions last night as well, and will most likely get platelets again this evening.

My boys are here tonight, which has definitely made the battle of the past few days much more worth it -- I have really enjoyed spending the evening with my Gray.

Thanks so much for all of your prayers. Please keep them up! Tomorrow will be my last day of FLAG chemo, and then I will have mylotarg on Wednesday. For now they are planning to give me a full dose, depending on what my liver looks like by then. It is a highly toxic drug for the liver, so we have several concerns. It specifically targets snd destroys the protein CD33 in the cells, and I have been told that 95% of my blasts express CD33, so we are very hopeful that this will bring about remission for me.

FLAG Day 2 of 5

I started chemo yesterday afternoon. The drugs run rather quickly, so it's not the continuous or hours long infusions I have come to know. That aspect is kind of nice. I'm also still on two different IV antibiotics for my central line and hoping it won't need to be pulled.

I haven't slept well the past two nights, and as a result I can barely keep my eyes open today. I've had a few good naps already. I'm taking dilautid still for the pain in my line and back (from the biopsy) and that tends to make me sleepy as well. I started feeling some nausea last night after finishing chemo but so far it has been manageable and I've been able to keep meals down.

Brandon stayed with me through yesterday afternoon, but he will need to work the next several days. I am hoping he can bring Gary up one evening soon so I can visit with him. He is allowed to visit as long as he passes the health exam at the door. Thankfully he just finished cutting a few teeth last week, so his typical symptoms from that have disappeared and Lord willing, he'll stay healthy. As my counts fall over the next days I will basically be isolated, except for brief visits from family.

For now things are really going as well as can be expected. I am somewhat nervous about the final chemo drug, mylotarg, as it can cause significant liver damage, especially when used with younger post-transplant patients. The doctors have made a good case for using it, though, and say it has the best chance of getting me into remission. If I can reach remission, we will do a second transplant with another sibling donor. That is the what I'm racing for -- the ultimate goal and the only chance of a "cure."

Happy Birthday to my dad today.

Biopsy #9

The biopsy went well this morning. i requested the same meds as last time, and they really seem to help make it more bearable. They also took a DNA sample from my mouth and a skin biopsy as part of the study. I am really glad I was given an opportunity to participate in a study. So many others have gone before me and I finally feel like I can contribute something.

I'm still on antibiotics in an attempt to save my central line. The plan is to start chemo this afternoon. I have felt moments of peace -- just realizing that God has me exactly where I'm supposed to be right now, and His grace is always sufficient.

Tuesday evening update

I'll probably have a series of shorter, more frequent updates for the next few days.

As far as I know the test went well this afternoon on my heart and we'll be starting chemo tomorrow. It is a five day regimen with mylotarg on day eight. At this point it looks like we'll use all four drugs -- fludarabine, idarubicin, cytarabine (Ara-C) and mylotarg.

I am also scheduled for a bone marrow biopsy/aspiration in the morning. The resident asked me this evening if I would be willing to participate in a research project and bank cells for genetic mapping. I thought it would be a good opportunity to give something back, and then when another doctor came by later for rounds he made it seem like he wanted to do a biopsy one way or the other, so I can't say it's totally heroic or anything. They will be able to check my cytogenetics once again and make sure nothing has changed since my last biopsy. I think everyone familiar with this blog knows how I feel about biopsy -- please pray that it goes well.

And thank you, once again, for your faithfulness to pray. I feel like I am always throwing out prayer requests and few thanks -- I realize the gift it is and appreciate all of you so much.

A prisoner once again

Why is it that being admitted to the hospital feels like being imprisoned? Not that I've been to prison, but still...the similarities seem striking.

We met with my doctor this morning after consulting with multiple other hospitals and doctors. I was admitted around noon to the sixth floor and will begin chemo either tonight or tomorrow. We decided to do the FLAG therapy, and we're still debating about whether or not to use mylotarg along with it. (Leaning against it per advice from Sloan-Kettering and some other "big" institutions.) In the meantime I'm headed downstairs for a MUGGA test to make sure my heart can handle idarubacin and will most likely have my central line pulled and replaced.

It's hard to be here again, and there are a lot of emotions. My room is without much of a view, but thankfully there is a courtyard several floors down that I can gaze down upon, so it's not all brick walls staring back at me. I miss my Gary, but I am fighting for him.

Please pray for endurance.

Update

I'm at Ellis today for labs and red cell transfusion. Counts today are:

WBC - 34.1
Hgb - 8.5
Hct - 24.9
Platelets - 40
Blasts - 81%
Abs Blasts - 28
Neuts - 3%
Abs Neuts - 1.02

I'll also be getting vancomycin today because it appears that my central line is infected. It's been very painful the past 24 hours to the point that I've taken dilautid. They almost decided to pull it today, but I just spoke to the doctor and they're going to let Barnes handle it. I am really upset about the idea of losing my central line. Having a new one placed means surgery and several days of pain, plus, I have built up enough scar tissue that I'm not sure if they can place a new one in my chest and the other alternate sites are less than ideal. I have an appointment with my doctor at Barnes tomorrow morning and may be admitted afterwards. Please pray that the Lord will protect me from infection (it will take a few days to get the cultures back to see what exactly is going on), that I will not react to the Vanc as is typical for me, and that my doctor will be open to a second transplant.

Thank you to everyone for your encouragement. Also, thanks to those who have given us contact information for other doctors/hospitals. I really want to pursue a second transplant and we're making calls today to see if other hospitals will be willing to work with me if my doctor still says no tomorrow. I know God holds the heart of the king and controls it as He wills.

The beginning of the end?

I wasn't sure how to title this post, as I think the end probably began a long time ago. But once again it seems we've hit what may prove to be the end of the road rather than a mere bend.

I have stopped responding to Decitabine, and my doctors at Ellis have basically said there is nothing more they can do for me. They recommended contacting my transplant doctor at Barnes to see what they could offer me. I don't qualify for any of the current clinical trials and though a second transplant was mentioned earlier in the week, my phone call with the doctor this evening was less than promising as he summed up a second transplant as the "height of medical futility." His recommendation was a type of FLAG treatment, which as some may remember was also recommended back in February. We chose not to go that route then, and I don't see why I would choose to go that route now. I was told that if I could achieve significant remission with FLAG (assuming I survive the drugs and still have enough bodily function to qualify -- which with these drugs is a long shot) they may consider a second transplant at that time. Given the fact that I have never acheived remission I feel they are basically trying to pacify me with a treatment that is basically a death certificate. Being told that if I am admitted I can expect to never leave the hospital isn't exactly encouraging.

For now the plan is to go to Ellis Monday morning for lab work and make as many phone calls as it takes to get as many second opinions as possible, and try to get in to see my local oncologist on Tuesday before going up to Barnes also on Tuesday, where we will discuss the options with my transplant doctor. He said I can plan to be admitted from the clinic -- I may take my walking papers and come home to die. Though, I am not naive enough to believe that death for me will be either at home or easy. This is when you sign the papers telling your family it's o.k. to pull the plug, because that's basically what you know it will come down to.

So, needless to say, we ask for your prayers, that someone will come up with something -- that the doctors may have a change of heart about a second transplant. I know it is a longshot, and I know it is a horrible, horrible procedure. I know that better than anyone. But I don't want to be told I'm out of options, and I don't want the only options presented to me to be ones that are merely a terrible way to die.

Storm heaven for us, please. We need all the wisdom God can give.

The Final DLI

From beginning to end...Daniel donating.

Pheresis machine

Frozen cells

Infusion


I'm sitting in one of the treatment rooms at Siteman Cancer Center, getting a unit of platelets and some fluids before they bring up the frozen cells in a little while. The view from this room is similar to the one I had while undergoing transplant, so it brings back a lot of memories. Last November they were finishing up the apartment building across the way and I spent many hours watching men on scaffolds several stories high doing the window trim and other little things to complete the building. Now when I look out I see patio furniture on the balconies, and various sized curtains on each window, reminders of time passed, reminders that I am still alive.



We came into today with a lot of concerns due to the trend my recent labs have taken. The doctor did a good job of calming our fears. Our continued prayer is that the chemo will continue to keep things in check (that the blast count will drop) and that this final large infusion of leukocytes will overcome the leukemia in my body. For now the plan is to continue with chemo again next month and as long as it proves effective, and I will also have a bone marrow biopsy/aspiration in a month. Not sure yet if we'll do that here at Siteman or locally at Ellis. I am tired of being a guinea pig at the teaching hospital, so the decision will be based primarily on who would be doing it at Ellis. I feel I've contributed enough to student education and I would just prefer to have someone who knows what they're doing and is proficient at it as I face the needles once again. The tenderness in my lower back (ichial crest to be specific) is constant, and I don't even care for pressure on the locations, so having it attacked once again is hard to accept. I know it is just the evil part of having leukemia. The doctor mentioned a few new drugs that may be an option for me if/when the Decitabine quits working. One is being used as a clinical trial here at Siteman, which I would qualify for. At this point the drug options I have left are all considered experimental so it can be a challenge to get insurance coverage for them. I am very thankful to Dr. Medlin and the Ellis social worker who managed to get Decitabine approved for me, as the out of pocket cost is over $20,000 per month. I realize insurance can make or break your survival, and so far our company has been exceptional, for which I am very thankful. I view it as another of the Lord's provisions on our behalf. We are not ruling out the possibility of a second transplant with my sister as donor, but that is definitely the worst case scenario.

As always, we ask that you pray that the DLI will do its job targeting the leukemic cells and not my body. Thank you for your continued prayer and support.

Labs

Today's labs were trending downward, which indicates the chemo is doing its job. The blasts are still higher than I would like, but hopefully they will continue to drop over the next few weeks, along with the help from the final DLI.

Thanks for your prayers.

Chemo Round Four

Our appointment with my primary oncologist went well last Wednesday. He was pleased with how things have been going. I'll meet with my transplant doctor prior to the DLI next Tuesday and we'll most likely schedule bone marrow biopsy/aspiration #9 and make plans regarding what the future holds as far as continuing chemo and a possible second transplant.

In the meantime, I'm not pleased with my labs today. My white count doubled and blasts jumped to 21%. I'm trying not to jump to conclusions, but suffice it to say it's never a good thing when that happens. Please pray that the chemo this week will be successful in knocking the blasts back down and that the final DLI on the 12th will be effective. And for my sanity until the next set of labs on Thursday.


All heavy laden acquainted with sorrow
May Christ in our marrow, carry us home
From alabaster come blessings of laughter
A fragrance of passion and joy from the truth

Grant the unbroken tears ever flowing
From hearts of contrition only for You
May sin never hold true that love never broke through
For God's mercy holds us and we are His own

This road that we travel, may it be the straight and narrow
God give us peace and grace from You, all the day
Shelter with fire, our voices we raise still higher
God give us peace and grace from You, all the day through
- Jars of Clay

DLI #2 Update

So far no GVHD. I wasn't feeling great a few days after the infusion, and wondered if I was starting in with something, but it cleared up without treatment. I guess it's full speed ahead with next week's chemo and the final DLI on the 12th of June. I'll meet with Dr. Perry in the morning but I don't expect any changes to the plan.

Today finds me at SEU (Symptom Eval Unit) in the University Hospital. Due to the holiday, Ellis Fischel's AIU bumped me here for a day of platelet and blood transfusions. I haven't been here since I left last October, headed to transplant. It's been really great to see my old nurses, but it has also brought back a flood of memories, some I thought I had forgotten. When the hospital meal tray arrived at lunch I couldn't even touch it. Everyone remarks on how good I look, and I remember that "death warmed over" was probably a compliment when I left last year. Most of the nurses have never seen me with hair or some meat on my bones.



We're celebrating birthday week at our house -- Brandon and I both have birthdays within the same week and Gary is 18 months old today. We celebrated his 1 1/2 birthday yesterday -- yes, 1/2 birthday. I decided since I missed the first and don't know what will be going on with the 2nd, we were gonna woop it up for his 1 1/2. I'm excited about turning 26. Last year I declared to anyone who would listen how old I was getting and that I was never going to celebrate another birthday...what a difference a year makes. WIthin a month of that statement I was certainly eating my words. I said early in my blog posting that I had hope to see my 30th birthday -- and I still cling to that hope.

DLI #2

The 2nd DLI is finished. We infused 50 million cells this time. It was my first experience with frozen cells, and having heard much about the taste of the preservative used in the freezing process I wasn't quite sure what to expect. It's weird. That's all I can really say about it. They're keeping me in observation for about another half hour, and then we should be able to head home. It has been a long day.



The cryo-lab storage container for the cells.

My next round of chemo begins June 4th and the next and final DLI is scheduled for June 12th, assuming I don't present with GVHD in the meantime. I spoke to the doctor today about the possibility of doing a second allogeneic stem cell transplant if the DLIs are unsuccessful, if we are able to keep my blasts low using Decitabine. He said he would think about it. It helps that I have so many siblings and matches readily available. I am beginning to realize I am a rarity at this point. The doctor said that relapse immediately after transplant usually has a very fast disease progression, thus the two month prognosis I was given. I think they are all surprised by where I'm at right now. I've never been the optomist so I am hesitant to get too emotionally involved in the fact that things seem to be going o.k. right now. I'm still very, very sick. I still require seemingly constant tranfusions...but I am alive. Nothing short of a miracle at this stage.

Thanks so much for all of your prayers.

Transplant +6 months

Today marks the six month anniversary of my transplant. I would love to be sitting here in a state of remission, but even though I'm still dying I thought it was worth noting. The odds are certainly against me to make it a year past transplant, so I value each day. I try to remember that I've beaten multiple odds just to be at this point, and that I am an individual, not a statistic. I was essentially killed four times in as many months last year...sometimes I wonder how it is possible that I am still alive.

I've been using a much smaller bandage on my central line, giving the majority of the skin some time to heal. It seems to be doing so, slowly but surely. I'm still not sure what to do about the skin immediately around the site. Someone mentioned an alternative bandage that I am not familiar with -- I need to check with my doctor to see if it is an option. I was originally told central lines only stay in about six months, and I'm past seven months now, so I'm not sure if they really know what to do once the skin starts rejecting adhesive. Thanks for your prayers. I'm really grateful that the site itself is remaining free of infection. My counts will be falling this week, so it's especially important to avoid infection.

Friday at 8 a.m. I'll be at the Siteman Cancer Center (Barnes) for my next DLI. It will be a larger infusion of cells this time (last time was 10 million) and the same prayer requests apply. It would be "good" to have manageable GVHD and the Graft vs. Leukemia effect. I will be honest and say I am dreading Friday. Anyone who knows anything about GVHD knows why. It's like holding a loaded gun to your head and pulling the trigger. I just can't help but feel a little crazy for going through this again, but I know I don't have any real options. Times like this I stop and remember I'm dying, and any benefit outweighs the risk at this point. I'm anxious to see what my labs do this week. We've been told repeatedly that it takes at least three months to see an effect from Decitabine, and since I've completed three courses I'm really hoping the blasts stay down this time and don't bounce back up again. I watched a documentary on Discovery last week called "Living with Cancer." There was no mention of God at any point during the show, but other than that I found the comments by those being interviewed echoed a lot of my own thoughts. Lance Armstrong talked about taking a crash course in oncology, and always getting copies of his labs and test results and viewing them like a score in a competition. I've approached leukemia in the same way -- often living and dying emotionally by the latest results. Not sure if that's the best thing to do, but to fight is to live in my opinion.

Prayer Request

I've developed a pretty nasty rash around my central line (Hickman). I mentioned it as a prayer request before -- this is about ten times worse and I'm really worried about infection. I had the doctor check it this morning while at the hospital for chemo and he said it looks o.k. so far, but if I start running a fever or if it looks infected I'll need to start an antibiotic. Worst case scenario, since my counts will be falling from chemo, I could end up in the hospital on IV meds and need to have the line removed.

I do not have a latex allergy, it's just skin that has been covered up for seven months that has had enough. I've tried every type of bandage that they make. Hypafix seems to be the best option right now because the tagaderm is condensating on the inside due to humidity and a wet dressing encourages a fungal infection, so I can't go there. It's extremely uncomfortable and somewhat swollen -- I'd really appreciate prayer that it will clear up quickly.

Also, to update, today was day two of chemo. I started out the week with blasts at 2%, which is the lowest they've been pre-chemo, I believe. I think this round is hitting me harder than the previous one, but time will tell.

Thanks for your prayers.

Amy

A Sovereign God

I'd like to begin with an excerpt from "Christ and Cancer" by John Piper.

God controls who gets sick and who gets well, and all his decisions are for the good of his children, even if they may be very painful and long-lasting. It was God who subjected creation to futility and corruption, and he is the one who can liberate it again. In Exodus 4:11, when Moses refused to go speak to Pharaoh, God said to him, "Who made man's mouth? Who makes him dumb or deaf or seeing or blind? Is it not I the Lord?" Behind all sickness is finally the sovereign hand of God. God speaks in Deuteronomy 32:39, "See now that I, I am he, and there is no God besides me; it is I who put to death and give life. I have wounded and it is I who heal; and there is no one who can deliver from my hand."

But what about Satan? Isn't he the great enemy of our wholeness? Doesn't he attack us morally and physically? Wasn't it Satan who tormented Job? Yes, it was. But Satan has no power but what is allotted to him by God. He is an enemy on a chain. In fact, for the writer of the book of Job it was not wrong to say that the sores afflicted by Satan were sent from God. For example, in Job 2:7 we read, "So Satan went forth from the presence of the Lord, and afflicted Job with loathsome sores from the sole of his foot to the crown of his head." Then after Job's wife urges him to curse God and die, Job says, "Shall we receive good at the hand of the Lord and not receive evil?" And lest we think that Job erred in attributing to God his sores afflicted by Satan, the writer adds in verse 10, "In all this Job did not sin with his lips." In other words, it is no sin to recognize the sovereign hand of God even behind a disease of which Satan may be the more immediate cause.

Satan may be sly but on some things he is stupid, because he fails to see that all his attempts to despoil the godly are simply turned by God's providence into occasions for the purifying and strengthening of faith. God's goal for his people in this age is not primarily to rid them of sickness and pain, but to purge us of all the remnants of sin and cause us in our weakness to cleave to him as our only hope.

My son, do not regard lightly the discipline of the Lord, nor faint when you are reproved by him; for those whom the Lord loves he disciplines, and he scourges every son whom he receives . . . he disciplines us for our good, that we may share his holiness. All discipline for the moment seems not to be joyful, but sorrowful; yet to those who have been trained by it, afterwards it yields the peaceful fruit of righteousness. (Hebrews 12:5, 6, 10, 11)

All the affliction that comes to the children of God, whether through persecution or sickness, is intended by God to increase our holiness by causing us to rely more on the God who raises the dead (2 Corinthians 1:9). If we get angry at God in our sickness we are rejecting his love. For it is always in love that he disciplines his children. It is for our good and we must seek to learn some rich lesson of faith from it. Then we will say with the psalmist, "It was good for me that I was afflicted, that I may learn thy statutes . . . I know, O Lord, that thy judgments are righteous, and that in faithfulness thou hast afflicted me" (Psalm 119:71, 75). That is my fourth affirmation: ultimately God controls who gets sick and who gets well and all his decisions are for the good of his children, even if the pain is great and the sickness long. For as the last verse of our text, Romans 8:28, says, "God causes all things to work together for good to those who love God and are called according to his purpose."

http://www.desiringgod.org/ResourceLibrary/Sermons/ByTopic/32/243_Christ_and_Cancer/


I have been learning a lot about God this past year. I have always professed belief in a sovereign God, but the events of this past year have forced me to live my theology out loud. Easy enough to believe in a sovereign God when the way is easy, the struggle comes when life gets hard. This past week I have also been focusing on realizing that a God who does all things to His ultimate glory is also a loving God who understands my pain when no one else does. Spurgeon writes the following in Morning & Evening:

Believer, rest assured that the heart of Jesus cares about your meaner affairs. The breadth of his tender love is such that you may resort to him in all matters; for in all your afflictions he is afflicted, and like as a father pitieth his children, so doth he pity you. The meanest interests of all his saints are all borne upon the broad bosom of the Son of God. Oh, what a heart is his, that doth not merely comprehend the persons of his people, but comprehends also the diverse and innumerable concerns of all those persons! Dost thou think, O Christian, that thou canst measure the love of Christ? Think of what his love has brought thee—justification, adoption, sanctification, eternal life! The riches of his goodness are unsearchable; thou shalt never be able to tell them out or even conceive them. Oh, the breadth of the love of Christ!

Through a records request we discovered this past week that I do have chromosomal abnormalities -- I've been told all along that they were not able to find any. A FISH test done at Barnes to check engraftment after transplant also showed a specific abnormality that allows us to know the specific type of leukemia that I have -- t(11;19)(q23;p13.1). It is still categorized as AML M4, but goes by the name mixed-lineage leukemia (MLL) and in my particular case could present as either MLL-ELL or MLL-MEN (virtually identical). It is rare, affecting less thant 2400 people per year, with a median age of 19 and a median life expectancy of 6 months (most cases are infants, though all ages are susceptible). The chromosomes also indicate that I had a form of MDS prior to AML, as I had suspected. MDS can last for months or years before progressing into AML, so it is impossible for us to know how long I have really been sick. In light of this new information, we spent the weekend researching and contacted a doctor/professor currently studying this specific type of leukemia at the University of Chicago. I asked if he could point us to any specialists or clinical trials aimed specifically at MLL, and he said he wasn't aware of any, but that my current treatment "appears appropriate and state of the art." Decitabine is also the drug of choice per Harvard for treating this particular type of MLL. We consulted with my local oncologist yesterday and it is his opinion that the Decitabine is definitely keeping the disease at bay, though it is not yet achieving remission. We are going to continue with this course of chemo and the DLI as planned. I'm not sure what comes next if the Decitabine proves ineffective. My doctors are still doing research to ascertain the best options. Obviously it is our prayer that the Decitabine will prove effective in putting the disease into remission. It has been a gentle chemo, which I have greatly appreciated.

I have been amazed to realize that once again, God has gone before, and even though we just discovered this information, I am already on the treatment of choice. He truly is the One who heals -- the One who preserves our every breath.

I continue to need regular transfusions. I figured out yesterday that it is taking approximately 12 donors per month to keep me alive. They are strangers that I will never meet -- and a simple "thank you" seems insufficient. There are over 200,000 people currently living with forms of blood cancer. Do the math -- and please donate blood or platelets if you're able.

As always, thank you for your prayers.

April Update

I read another blog this week by a woman about my age who also has AML. She's currently undergoing the same experimental treatment as me (decitabine) and expressed that if this doesn't work, it's the end of the road for her. I understand the emotional rollercoaster she is on. Fighting to live. The good days for us are the worst days for the rest of the world...our feelings become very relative. My definition of "good" has come to mean an entirely different thing than it did a year ago.

That being said, things are going as well as can be expected right now. Chemo week came and went without too many horrible side effects -- just the standard complaints. I've been able to keep my weight up for the most part, and finally exceeded my starting weight from a year ago. It's still too early to tell, really, if the decitabine is working, though it appears that the disease isn't progressing at a rapid pace. I'm still here -- that's proof enough, I suppose. I still require regular transfusions. Red Cross commercials make me cry. I don't think people really realize the gift they are giving when they donate blood product. It is truly a gift of life. My counts are low this weekend and I am fighting the weariness, shortness of breath, aching muscles, and all that goes with it. It has me actually looking forward to spending Monday getting transfusions.

I may not update for a little while, unless there is something important to note. I'll see my oncologist on May 2nd, do a week of chemo starting May 7th, and have another DLI on May 18th. I'll be getting a much larger "dose" of cells this time, so I would appreciate prayer that it is effective without killing me. Trust me, we transplantees view GVHD with much fear and trembling.

As always, thank you so much for your prayers, love and support.

Quick Update

Only one more day of chemo! I'm excited...going to the hospital every day gets old, but again, I'm thankful that I'm not inpatient. So far I haven't noticed many side effects. The skin around my bandage seems to be healing nicely. Thanks for all the prayers! We had a doctor check it yesterday while I was getting chemo, just to be on the safe side. I may switch over to Hypafix (spelling?) tomorrow -- one of my nurses calls it "old lady tape." It's a lot easier on the skin, though I tend to avoid it because it's not waterproof and makes showers difficult. Several have suggested using the tegaderm over top, so I think I'll give that a try. I never really thought I had sensitive skin but tape has often been an issue over the past year.

My platelets seem to be holding a little bit better this time. They were at 21 today and the fellow on call decided to let me go through the weekend, if possible. She told me what to watch for if they get too low and to call SEU at the main hospital if necessary over the weekend. If they get really low there is some risk of stroke or hemorrhage, but that is supposed to be rare. I forgot to ask for a copy of my labs today so I'm not sure what my ANC is like. I just continue to be cautious and always mask up when out at the hospital.

We'll be meeting with my transplant doctor at Barnes on Tuesday. He wants to make sure I don't have any GVHD that I'm not aware of. I spoke with him on the phone the other day and he has decided to wait on the next DLI. I'll find out more on Tuesday, but for now it looks like May or June. He said in his opinion the disease is progressing slowly, if at all. (Blasts were at 13% on Monday, for those in the know.) I was quite pleased to hear that, especially from the same man who gave me a two month prognosis, but he hasn't been following my labs these past few months, so I prefer to have him repeat that after I show him some records on Tuesday.

Thanks so much for all of your prayers. Have a good weekend!

Chemo Round Two

I'm writing from Ellis Fischel once again. We've been here since a little before 8 a.m. I'm about halfway done with today's dose of Decitabine, and then I'll start a bag of platelets. They were down to 8 today and as a result I'm covered with petechiae rash. I'm hoping they'll hold better this time. I read over the weekend that it's possible for the body to eventually build up a resistance to platelet infusions and quit responding. For that reason, they don't give any more than necessary.

Prayer requests right now are for mild side effects from chemo. I'm getting Zofran again as a premed, and using another anti-emetic at home. Last time nausea seemed to be the worst side effect, and for the most part I could manage it with the drugs. The other major side effect for me was a constant tense, jittery feeling. I'm currently undergoing hormone therapy to deal with some disease side effects, so it's a bit of an emotional rollercoaster. And of course, low counts. My ANC was up to 1200 today. I was very pleased with that. Still only about half of what a normal person would have on the low end. Also, I've developed an area of broken skin around the bandage on my Hickman catheter. The bandage is called tagaderm, and it's similar to a sticky-sided saran wrap. Sometimes I react to it, and I would appreciate prayer that it would heal quickly and not get infected, as it's only about 1" from the actual catheter site. If the site becomes infected they'll have to pull the line and I'll need outpatient surgery to place another one. I don't even want to think about the possibility. Healing is a slow process when counts are low -- in the meantime I'm keeping Neosporin on it to help ward off an infection.

I hope everyone had a blessed Resurrection Sunday. In light of everything in my life this year, I am especially thankful that Christ has risen, and death has been swallowed up in victory.

Information and some answers

Over the past months I've received a lot of e-mail. It varies from "I'm praying for you" to detailed advice. I haven't taken the time to reply to all of them, especially the more detailed ones which in turn require a detailed response. It's easy to get tired of explaining things and justifying to family and friends decisions we have made, to be perfectly honest, even though I know the advice and questions come out of a sincere desire to help. So, I've decided to do a "questions and answers" post to address the questions we most commonly receive.

First, I want to explain very basically what AML is. There will be approximately 12,000 new cases in the US this year. Of those, 90% will affect people over 65 years of age. 90% will die. There is debate among the leukemia community as to whether these statistics are accurate based on the fact that most AML deaths are recorded under the secondary cause of death, such as pneumonia or influenza. A family member of the deceased needs to stay on top of the doctor in order to have the cause of death recorded as AML.

AML is a result of acquired genetic damage to the DNA of developing cells in the bone marrow. In my case, they were unable to find any genetic changes, and I haven't been exposed to things like benzene or radiation and never smoked, so I was told it just happened one day like being hit by lightning. (Studies now show that it only takes the carcinogens in the smoke of one cigarette to cause irreversible genetic damage, so I certainly don't rule out second hand smoke as a possibility. Unfortunately none of us have managed to avoid cigarette smoke all of our lives.) We feel there is still a genetic marker somewhere, but it has yet to be discovered. One of the chromosomal changes, dubbed Philadelphia after its place of discovery, was just found in the past ten years. AML is also not a result of a compromised immune system or a failure to think positively.

The effects of AML are an uncontrolled, exaggerated growth of cells called leukemic blasts which fail to function as normal blood cells. My oncologist refers to them as juvenile delinquents. The other major effect is a blockage of the normal cells which in turn causes me to be anemic, have low platelets and become neutropenic. Lots of people have implied that my struggle with low counts and constant need for blood and platelets is because we've chosen to do chemo, not realizing that my disease alone does all the damage of chemo. The difference with chemo is that something is attacking the blasts along with all the other cells.*

The overwhelming advice we are given is to eat only organic or raw foods. I recognize that with most diseases, this is probably a good approach to use along with treatment. And certainly eating healthy is something I've focused on, but an organic or raw food diet poses significant risk to AML patients because our immune system is compromised from the disease. It's impossible to wash all the bacteria from raw foods (such as E. Coli or more common strains), and while most people can handle it, AML patients cannot. It's not just the doctors being "anti natural" -- it's a fact that I have to deal with everyday. I avoid uncooked foods just like I avoid public places. Unfortunately it goes with the diagnosis. Through study we have also learned that I need to avoid an iron-rich diet which has me avoiding meat along with a lot of green vegetables and some fruits. It is our understanding that the leukemic blasts "feed" on iron and I honestly feel my disease is progressing at a slower rate with these diet changes, though only time will tell for sure.

The one aspect of the disease that I hate the most is the compromised immune system. I have missed anniversary parties, weddings and funerals this past year, always weighing the benefit against the risk of death. At this time it is paramount that I stay healthy. AML patients die of secondary diseases as a result of low blood counts. If I stay healthy, I stay alive, and I have time to fight.

I have become increasingly aware of the danger of giving medical advice to others. (As opposed to making someone aware of a possible treatment so they can research how it may apply to their illness.) Even within AML there are subtypes and chromosomal involvement or deletion which cause treatment to vary greatly. What is good for one patient may kill another, and certainly leukemia often gets lumped in with other types of cancer and recommendations are based upon a friend or family member who once had breast or prostrate cancer, the two most common types. It's frustrating, and I often find myself repeating "they're not the same!!" Unfortunately cancer is a very wide category, and each case is unique. To that end, I do not want anything I have written or any treatment options I have mentioned on this blog to ever be construed as medical advice for another patient. My advice has been and continues to be -- learn about your disease. Study it. Learn to communicate with your doctors and get multiple opinions. Try to have a patient advocate. I don't have one professionally, though I feel my husband functions as such, as have other family members when needed. We've consulted with multiple hospitals, cancer patient advocates, oncologists, hematologists, immunologists, naturopaths and a psychiatrist. All have helped to give us information on different aspects of this disease, and I find the knowledge helps so much in our own personal fight.

Again, thank you for the love and care that each e-mail expresses, and I hope this has helped to clarify AML and the treatment options we are pursuing. We have been very grateful for everyone who has taken the time to make us aware of possible treatments, and it is only my intention to "get a reply" to everyone without taking a lot of time away from my family right now.

*I obtained most of this information from the following website:
http://www.leukemia-lymphoma.org/all_page?item_id=8459

Friday Update

I'm sitting in a bed at Ellis Fischel, about halfway through my second unit of red cells for the day. I've been here since 8 a.m., and it's going on 4 p.m. Transfusions have become a sort of part time job. So far I've needed a blood transfusion about every other week. My platelets haven't been holding well -- I had a unit last Friday, again on Wednesday, and they're in the 30s again today, so I'm sure I'll need more on Monday. I get them anytime the count drops below 20 -- an average person would want to be 150 on the low end, just to give an idea. Anything below 50 is dangerous. A few weeks ago I hit my record low of 7. I don't want to get back there.

I met with Dr. Perry on Wednesday and we will continue with chemo next week as planned. Just like last time -- five days and then off for three weeks. At this point I haven't shown any significant GVHD so I expect to have another DLI 10-14 days after this round of chemo. I don't really have much to say as far as disease progression goes. The chemo drug we are using causes the counts to jump all over the place so there's no real way to tell what's going on at this point. I expect to have a bone marrow biopsy/aspiration after the three month point, sometime in May. Somedays I feel really good, and other days I'm wiped out. My husband compares it to pregnancy when people ask how I feel. I'm tired, nauseous and my iron is constantly low.

I continue to be grateful for each healthy day (outside of GVHD). We have focused on supplements that we feel aid my immune system and I've been thrilled to make it through the past three weeks of low counts without getting sick. I am continually reminded of the risks -- so many AML patients end up dying from something like influenza or pneumonia. If I can stay healthy, I have time to fight this. My absolute neutrophil count (ANC) had been sitting at about 100 but was starting to climb as of Tuesday. They like to see it at 1000 before starting another round of chemo.

As always, thanks for your prayers and for the many ways you bless us.