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The Journey -- Amatullah As-Salaamu Alaikum and Greetings of Peace. This page is designed to keep you updated on the progress of my journey to--and through--a MUD/SCT (Matched Unrelated Donor Stem Cell Transplant), insha'Allah (God Willing). I also pray it serves as a reminder that we come from God and to Him we return.
Please don't hesitate to contact me for any reason. The next year of my life is an 'open book' so to speak!
May your own life be spent well pleased with and well pleasing our Lord. Ameen.
(To read the blog I created for my students, please visit:
www.caringbridge.org/ca/myteacher)
Journal
Tuesday, March 15, 2005 0:10 AM CST “Are we there yet?”
As-Salaamu Alaikum,
I’m at day -20 and counting to transplant. And I’m frustrated. I had wanted to be able to turn myself off, so to speak, and let the professionals run the show. Since I was diagnosed with CML, I had to take the driver’s seat when it came to my health care (I had, after all, been misdiagnosed twice!). I was hoping I could relax—funny word for someone facing a transplant—during this process but you just can’t let down your guard.
Although I am not going to knock myself out trying to become a transplant specialist, I have had to work very hard to coordinate the behind the scenes stuff. Stanford is a large medical center serving lots of patients. So is Kaiser. I’ve gotten lost in the mix a time or two in the past few weeks and it makes one feel decidedly like a long tailed cat in a roomful of rockers, as they say. I’ve gotten someone else’s blood results in the mail (thought I was cured! :smiling:), I’ve been scheduled for pre-transplant appointments two weeks after I was supposed to have had the transplant completed, I’ve been given wrong dates and had the staff insist they were right when I knew they weren’t…ah, health care!
But am I complaining? (Ahem…just a little, yeah)
Just a little. And then, God snaps me back to that persistent state of gratitude I’m so…well, grateful…that I manage to maintain. It isn’t hard, really, when I look at my life. On Friday the fourth, I had my last official day at school. I could not have received any warmer ‘send-off’ than the one both the students and the staff gave to me. The cards, the hugs, the du’aa, the genuine sense of loving and being loved—the delicious chocolate cake!!! Wowie! (Muslims read that: masha’Allah :smiling:) As if that weren’t enough, my dear friends from San Francisco arranged a benefit dinner which was well attended and full of people I hadn’t seen in years. I am constantly taken aback at the depth of the bonds it is possible to form with people for no other reason than for the Sake of God.
Riding high on all this good feeling stuff, however, continues to bring to mind the blessings I’ve been given. I just keep thinking, “When I pay this back, insha’Allah, it’s going to be with something fantastic” (I may have to pledge my firstborn son to the community or something, I don’t know – and if you knew my little tornado of a son, you’d know the community would probably pledge him right back to me! :laughing:). I also think, “What of the ones we don’t know about? What of the strangers to the community who are our brothers and sisters and who are suffering alone? What makes me so worthy of this when they don’t have it?”
That’s a tough question to even pose let alone ponder. Why me? I don’t ask that when it comes to being blind or having leukemia or even facing the transplant. I don’t think to question God about the trials He has granted me. I don’t know why—it seems natural enough to ask Him why, even though as Muslims we know it isn’t in our interest (or our faith) to do so. So I don’t. But, I can’t help wondering what makes me worthy of the love and support I’ve received.
I am no one beyond ordinary. I talk a lot more than most people (could that be it??? :smiling:) and I talk louder than most people (I doubt that’s it!) but I don’t say anything more profound than anyone else. I say, “Remember God. Love Him. Obey Him. It pays off!” Maybe that’s why. See…this is why asking why doesn’t make much sense. There’s no answer short of His answer and we won’t know that until we meet Him.
What posing the question does, however, is force me to live up to the expectations I feel. I feel I need to write more, give more, be more, rise more. (Anyone heard Maya Angelou read “I rise”? Awesome, God guide her, awesome.) I hope you all pose the question to yourselves, too, because each and every one of us is gifted daily by God. In ways we can’t begin to number, even should we dream to. Do you breathe? Do you feel the warmth of sun rays on your skin? Does your body repel water? Do your lips curve into a smile? Does your hand lift and your foot fall? Gifts! And why do you deserve them anymore than the next person? THAT’s the question! That’s what I hope to spend the rest of my life answering by service to God. I am worthy just because I am His faithful, obedient creation (keywords: faithful AND obedient; belief without action is hollow and shallow). He is indeed The Most Merciful.
Aside from waxing—and waning!—philosophical, I’ve been quite busy these past few weeks. I’ve had the following tests (ranging from “ouch” to “who-in-the-heck-invented-this-method-of-torture”):
Echocardiogram (an ultrasound of the heart) – this was a fun test for me. It came on the heels of a bone marrow biopsy and I was so glad to be sitting in the waiting room of a specialist I’ve had yet to be concerned about and to be waiting for a test that wasn’t going to poke, prod, invade or otherwise cause me to grimace, cry or shout. I did feel a tinge bad however that I was so obviously happy to be there when others obviously weren’t. So, I said loudly to my husband, “Gee, I sure wasn’t smiling this much yesterday in my ONCOLOGIST’S office when I was waiting for that EXCRUCIATING bone marrow biopsy!” I think they got the point. : )
Bone Marrow Biopsy (an invasive procedure which withdraws a small sample of bone marrow from the hip bone) – I’ve had a number of these puppies and they take the cake as far as I’m concerned. They are indeed painful (very much so) and the worst part is the waiting, the knowing that in a few minutes you’re going to be bottoms up while the doctor screws a tool into your bone to yank a piece out. Yeah. Nice.
However, I am happy to report on the positive power of prayer at its finest. As Muslims, we know that God always answers our prayers. Always. He does it in one of three ways: 1. He grants us an answer we can feel and see in this life, 2. He keeps the reward for our request of Him until the Day of Judgment (if that isn’t the best part of Islam, what is? God rewards you for asking Him for stuff!!) or 3. He will keep something bad away from you in this life.
So, I’m sitting up there on this cold table (is it a rule that all doctor’s offices have cold chills in the air like a bad scary movie?), and I simply say, “God, You know I’m having a hard time here. And I know You can do anything. Please let this be easy for me in whatever way You see fit.”
And, with God as my witness, and may He give you some of my good deeds if I am exaggerating, I swear it was one of the least painful biopsies I’ve ever had. When he told me to take a deep breath because the pain was coming, I was still waiting for the hurt when he said, “We’re all done. We got it.” I didn’t feel a thing. Glory to God in the Highest. Glory to God.
Okay, what other tests have they run me through…
Pulmonary Function (breathing into a machine to gauge your lung capacity/effectiveness) – another easy, no pain test. Despite the clot in my lung, there is no evidence of any damage and my lungs are in excellent shape (must be all the yelling I do!). This is yet another miracle from The One who bestows as He wills.
Pelvic Ultrasound – this wasn’t for the transplant per-se. I’ve had difficulty with my menses and this was to rule out any problems before it became too late to fix them. Once you begin radiation/chemo, you have no ability to produce blood so major surgery (heck, minor surgery) of any kind is a huge problem.
Teeth cleaning – it’s recommended for all transplant patients to come into this with good dental health to avoid problems. I got a deep cleaning (ouch, ouch) and a wisdom tooth pulled. My husband says I’m still smart, masha’Allah, so I guess I’m not missing much!
Yet to come:
This is my schedule for the next two weeks, insha’Allah (God Willing):
March 17, Radiation planning (This is a four-to-six hour appointment which involves taking very precise body measurements to create foam shields for organs during the radiation process. I don’t think it’s going to hurt any but my understanding is there will be a CAT scan and a number of x-rays to make sure the fit is right.)
March 23, Labs & Transplant Doctor Visit (My doctor just got the news she is going to be adopting a child from China so I will be getting a new doc – I am preferring to see this as a good sign from God that He’s sending me the best! And speaking of best, I certainly pray for the best for my doctor’s new arrival!!)
March 24, Catheter Training (An hour long one-to-one visit with a nurse who will explain how to care for my central line or catheter during the 100 or so days it will be in.)
March 25, Catheter Insertion (Outpatient procedure to insert a tube through the neck, thread it in the heart and down to the groin in order to ease the transplant process and remove the need for repeated pokes of IV’s and blood draws. The catheter stays in for a few months in case I need more blood product, more medicine or an intravenous type food supply.)
March 27, Portable IV fluid hook-up (During the radiation/chemo, it’s vital to flush the system of these toxins. It’s almost impossible to drink enough liquid to do so on my own so they will provide me with some portable fluids to take with me all the time during the next phase. It is stored in a fanny pack type thing and will be connected to the catheter.)
March 28-31, Radiation (Four days of outpatient radiation. I’m glad it’s outpatient—you used to be admitted for this—but it’s really the start of the whole thing and the no-turning-back point. God help me to be ready.)
April 1, Admitted to hospital
April 1-2, Chemotherapy (This high dose chemo is administered via the central line over two days. It is the final step to wiping out my body’s ability to make blood…and my body’s ability to make leukemic cells, too, insha’Allah!!!)
April 3, Day of Rest (Does this need explanation?! :smiling:)
April 4-30, Waiting for engraftment and release from hospital (Once the donor’s stem cells find their way inside my bones, my body should begin producing blood, God Willing. This is called ‘engraftment’ and is the first step to recovery. When my body is producing a relatively safe amount of platelets and white cells, I can be released from the hospital as long as I can eat properly.)
100 days after April 4, Stage 1 of Recovery (The first 100 days are the most critical. I will be severely immuno-compromised and cannot be exposed to any bacterial, viral or fungal germs. I will be wearing a special face mask with HEPA filters, eating a special diet and avoiding contact with people. This is also the time when the donor’s immune system cells can begin to fight against my body because they sense something is wrong in their environment (boy, are those little guys in for a big surprise when they wake up to find me where their guy used to be!). This is a period of careful watching and as always, praying.)
Day 100+, Stage 2 of Recovery (The next 6 months to a year is still a chancy time for me. I may develop a chronic case of Graft vs. Host and have to remain on immuno-suppressive drugs. The leukemia may come back. I may still become ill if exposed to germs. I may be too tired to function normally. OR I may be cured by the Grace and the Leave and the Might of God. I’m an optimist, how ‘bout ya’ll??!! : )
And speaking of optimism, I’m most certainly one if I think you’ll keep coming back to read novel length journal entries! : ) Sorry for this long missive but I’ve so much to get done and so much I want to say and share. Trust me…in about two weeks, you’ll probably be seeing some very short, short entries (as I understand it’s hard to type and toss your cookies at the same time! :groaning in anticipation:) : )
Wa Alaikum As-Salaam and with peace,
Amatullah
FUNDRAISING TOTALS:
We have another $2k to meet our initial goal of $20k. I will send you a more detailed report of the fundraising before I go into the Hospital, insha’Allah. But we’ve raised enough so I am able to begin! Alhamdulilah!!!!!
Read Journal History
Hospital Information: To Be Announced
Links: http://www.caringbridge.org/ca/myteacher A companion blog created with my students in mind. Feel free to visit as it's a more concise report of the day--to--day events of a transplant
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