Day +4

Well my intestines feel like I drank some Drano, and the fluids they have me on are making my skin very puffy and tight which has led to the on-again off-again headache I've had throughout the day. The headache medicine they gave me left me with some voodoo-inspired nightmares which were not at all pleasant, especially since I am not used to remembering my dreams at all. The worst part of this whole thing is that right now reading makes me nauseous, which is terrible because that's pretty much all I ever want to do. These symptoms should wane in a few days, although others are certainly waxing on the horizon.

The good news is that this morning I received my last chemo I should ever need (not the last drug though, ha!). Chemotherapy will have no more place in my life when the transplant takes hold, Amen! To continue a metaphor from before, this roller coaster has taken its main plunge and is at full speed ready for the loop-da-loop, upside down twist, and final drop. The dangers I face now are graft problems, which are generally treated with steroids, opportunistic infections like shingles and pneumonia, which are generally treated with antibiotics, and the occasional need for blood products.

The remote chance of disease recurrence, or relapse, which is treated with another transplant, though with far fewer chemo treatments than my current undertaking and with better success rates is, thankfully, just that - remote. (Upon second relapse a third transplant has a poor prognosis, so we won't consider that.)

My job is to stay focused, eat right and exercise (classic doctor recommendations!), and have faith. I do not doubt that our Lord is taking care of me; the thoughts and prayers of all my loved ones are sure proof of his grace operating in our lives.

Day +3

I woke up this morning actually feeling ok. Then they brought me more chemo. And boy are my arms tired.

Day +1

Ok... Obviously I can't work... I can't go back to school for at least a year... What am I going to do with my time? God willing, I now have some time. I suppose the best use of my time will be to solidify my knowledge base so that I am fully prepared for graduate school. Most of that work involves language study. I have to have a proficient reading knowledge of French and German. My Latin and Greek have to be in peak condition, not to mention my at-the-ready knowledge of ancient history and literature. This means studying the key figures from Homer to Constantine in more depth than I did when I was in college and re-reading the literature itself like the Oresteia, Argonautika, and Aeneid. I'm going to spend some time today making some lists and checking them twice. My Spanish studies will be what I do for fun. It will be interesting to see how much I can accomplish here in the hospital. Sleep is at a premium here because they have to check my vital signs at midnight and then again at 4 AM when they draw my blood for labs in the morning. I also have a few religious projects I have to squeeze in somewhere, perhaps I can consider that weekend work. We'll see how long my hospital stay will actually be when I'm discharged, but assuming I'm here for another 3 weeks at least, I think I can get a considerable amount of review accomplished even if I'm drugged half the time.

Day of Gratitude and Love

[update 7:50 PM: transplant complete.]




[update 4:25 PM: Awoke from benadryl induced nap to find folks munching on Chick-Fil-A. Mom is groggy but otherwise fine. Dad is one calm customer. The doctors and nurses were all great and tell me the drip should finish in a few hours.]



[update 1:15 PM: Nurse just informed us that the bag will be here at 2 PM. My premeds start in 15 mins. Hello Benadryl!]

[update 11:15 AM: Doctor just visited me and said mom is out of surgery and shaking off the anesthesia. The stem cells are being prepared, 2 bags, and things went well.]


[10:00 AM: Original Post]

Today is Day Zero (0). Today I receive the stem cells from my mother who is currently in surgery donating what I need to live. I am grateful for all the support of my loved ones as I go through this. I am reminded of two things today, associated quite randomly. First is a prayer by St. Jean-Baptiste Marie Vianney the Curé d'Ars, which is called the Act of Love. From my travels at holy sites in France, it is my favorite. It goes as follows:

I love You, O my God and
my sole desire is to love You until the last breath of my life.
I love You, O infinitely lovable God and
I prefer to die loving You than live one instant without loving You.
I love You, O my God, and
I do not desire anything but heaven so as to have the joy of loving You perfectly.
I love You, O my God, and
I fear hell, because there will not be the sweet consolation of loving You.
O my God, if my tongue cannot say in every moment that I love You,
I want my heart to say it in every beat.
Allow me the grace to suffer loving You,
to love you suffering and
one day to die loving You and feeling that I love You.
And as I approach my end, I beg you to increase and perfect my love of You.
Amen.

The French original is beautiful as well.

Secondly, on a less serious note, I woke up this morning with the most curious song stuck in my head. John Cougar Mellencamp's rendition of Buddy Holly's "Rave On" from the movie Cocktail. I think it sets the mood perfectly for today and so here it is.



Later, I will post a picture of the blood when it gets hung on my IV pole. Stay tuned...

Day -2

There it is, ladies and gentlemen! A count of zero!
Today and one more day of "rest" before the transplant on Thursday.






In other news... The Legend of Zelda is 25 years old today! Happy birthday to an old friend and classic! I don't know how many hours I spent on this game, but I'm sure I could be a rocket scientist if it weren't for Nintendo... and as always, nothing beats the original!






So, now that I am getting a second birthday and the clock is essentially being reset, I am taking inventory of my life's pursuits. In doing so, I have made a small list of things I have accomplished, things I should have accomplished, and things I want to accomplish in the future. This simple assessment of my life will redirect my studies, and bring to light what my capabilities really are. However, one blaring item at the top of my "should've" list is going to get my attention for the next few months while I recuperate. Besides, of course, keeping my Latin and Greek current and useful for biblical studies, which is where I spend most of my time, I am growing more and more aware of my lack of proficiency in the language my whole family speaks but me. I should learn Spanish. I don't think it'll be that hard because I have such a good grounding in it, growing up where I did, but the talking part has never taken hold in my mind. I will probably watch Spanish TV more and spend some time getting to know the grammar but I would appreciate any suggestions or helps to make my acquisition of Spanish go faster or easier.

It's Official!

Day -3

I have completed all the myeloablative chemotherapy necessary to eradicate my own marrow. My immune system, on a scale from 4.0-11.0, is now 0.1.

Very soon I will be requiring transfusions of blood and platelets. On the 24th that will include the stem cells from my mom. Her cells will begin to think they are mine in about 2 weeks time. We don't want them grafting too quickly but, as the parable teaches us, on good soil taking good root.

Perhaps my taste buds will come back before then but my doctor says don't count on it. And I really do count myself lucky that so far my stomach full of rocks and pasty mouth are my biggest concerns. My bilirubin was back to my baseline at 1.9 today, indicating that my liver is doing its best in the war effort. Constant IV fluids help since I'm eating and drinking like a bird.

So, I have 2 days of "rest" before the big day and if I can manage to read a little without getting nauseous I can try to get back to my studies. I will write about them tomorrow because there is a little project I could use your help on when I get home.

However, today is a special day because my beloved cousin Paul Navar was received into the arms of our Lord 2 years ago. My family will be praying a special rosary for his soul this evening around 6. Please join us, in whatever way you can, in remembering him today. Remember to pray to him as well as for him. The Communion of Saints is not just for the canonized.

Reminiscences

"If you've ever wanted to diet, now's your chance!" was my doctor's witty remark this morning after I told him my appetite was gone. He said some people don't get much of an appetite back for the full 80-100 days. So if I can just get over this water retention I may actually lose some weight. I am now officially on the MD Anderson diet.

The good news this morning is that my bilirubin went down a whole point to 2.7. My liver may be able to cope with this chemotherapy after all. Of course it usually spikes about 10 days after treatment, but if it stays below 5 or 6 in the next couple weeks after the transplant then we can stop worrying about that as a possible complication.

Although my room is small, I do have a fairly decent view of the south medical district. And if the light is just right the curvy street down below reminds me of the river at the grotto in Lourdes.















Can't you see the similarities?


This post was made possible by a grant from the Willpower Foundation. Providing willpower for over forty generations.

Feeling Bad, Thinking Good, Reading Scripture

The chemo really took effect yesterday and now nothing tastes good. Not even the soup my dad brought me today, which he made using my own recipe! At least this way my mom can eat more of the veggie soup my dad brought because she's going to need her strength in the coming days. General anesthesia is not something to take lightly. In the meantime, I have switched to chicken noodle soup, hospital style, and yogurt. Nothing else seems to sit right. It's not a stomach thing really, it's that everything tastes pasty and chemical-ly. My doctor said, "Welcome to the world of high dose chemotherapy," when I informed him this morning of how I was feeling. Although the effects on my blood are permanent, the effects on my GI tract should be temporary, and my appetite should return hopefully within a week. Though I doubt I've seen the worst of this. My bilirubin is 3.7 today.

I want to take this opportunity to thank everybody who's been keeping up with me. I appreciate all of your thoughts and prayers. I know that I am loved by such wonderful people, and it does indeed give me strength. One of my favorite passages to read when things seem bad is 1 Peter 4. Although this passage is directed toward the first century Christians who were being persecuted, as with all scripture, there is a meaning for the present as well. Verses 12 and 13 read, "Dear friends, do not be surprised at the fiery ordeal that has come on you to test you, as though something strange were happening to you. But rejoice inasmuch as you participate in the sufferings of Christ, so that you may be overjoyed when His glory is revealed." (NIV 2010 ed.) Much of the rest of it is concerning discipline, but is very affirming.

It's strange the way the whole chapter seems to speak to us in times of crisis. Please, just hold on to the hope that is in Christ, and love each other in all that you do. Life is amazing. Keep praying to all the angels and saints who are in heaven. Remember that "He is not the God of the dead, but of the living." (Mt 22:32) And lastly, "thanks be to God, who hath given us the victory [over death] through our Lord Jesus Christ. Therefore, my beloved brethren, be ye steadfast and unmoveable; always abounding in the work of the Lord, knowing that your labour is not in vain in the Lord." (1 Cor. 15:57-ff. Douay)

Danger zone!

Before I started Tuesday, I had asked the doctor what the usual preclusions to a successful transplant were and she said 1. Disease recurrence 2. Graft rejection 3. Opportunistic infections. In my case I also have the possibility of liver failure. Those of you who know of my close call back in June of 2009 when I went through my induction know that my usually harmless Gilbert's syndrome (a decreased ability to metabolize bilirubin due to low levels of a certain enzyme, ugt1a) can become a fatal complication if the liver is over-agitated. Excessive amounts of bilirubin in the bloodstream can cross the blood-brain barrier and cause encephalopathy, something I could do without, or sepsis. Normal ranges for bilirubin are between 0.0 - 1.0. Mine is usually in the 1.5-2.5 range which is still safe. During my close call mentioned above my level hit a peak of almost 35.0. Looking back at the trend, my liver was able to tolerate levels below 8.0 fairly well but anything above that severely aggravated the already inflamed liver tissue resulting in hyperbilirubinemia. This is known as neo-natal jaundice in babies. Other, milder, side effects are yellowing of the skin and water retention. Although, these too can be painful if allowed to go unchecked.

My level today crossed over from my baseline to 3.1.
The best way to treat this is with sunshine, lemon juice, tamarind extract, Chinese herbal blends and teas, and lots and lots of water. These are difficult treatments right now because the sun ain't shining, and even if it were I can't go outside; fresh fruits and generally anything uncooked are not allowed on the floor because of potential bacteria; and herbs are a last resort because we have no idea how they'll interact with the chemotherapy. My best chance of keeping this under control is to drink what I can and pass as much as possible through me. It may not sound pretty but I may have to poop my way out of this one!

The inpatient doctor, Dr. Kornblau, just told me what they all say, "we'll keep an eye on it." I know from experience that I must take a more proactive approach. My mom is kind enough to go home and brew some tea for me, and if my levels keep going up we'll have to consider the other options mentioned above along with the medical options of phenobarbitals and perhaps St. John's Wort which can help bili metabolism by supporting the ugt1a1 pathways, although it has other side effects, mostly from mood changes.

So right now raisin bran and prune juice are my friends.

And I continue to say my rosary daily, not for myself, but for all of my loved ones, family and friends, who have children, are having children, or are just big children themselves. Rest assured that I am one stubborn SOB and I ain't gonna give in to any of this nonsense my body wants to push on me. Besides, we know that it really isn't up to me. My Carmelite devotion to "Vacare Deo," emptying one of oneself so the love of God can fill you and work through you, gives me much solace. For as Moses knew, "The Lord will fight for you, and you have only to be still." (Ex 14:14)




This post was brought to you by the letters B and I. The BlogPress app and my handy-dandy iPhone!

Wednesday, Day -8

Well, I finally moved into my new apartment on the 11th floor of M.D. Anderson late Tuesday night. The bathroom is a little cramped but it's clean enough. It's the treatment for which I came, and I am receiving it indeed! Now, I've had chemotherapy before, and have tolerated it pretty well, but when they tell you to chew on ice chips for a couple hours so the chemo doesn't burn your mouth from the inside out, you know you're dealing with a whole new class of drug. Interestingly, the drug I took today, Melphalan, is a mustard derivative. You know, war crime stuff. Tomorrow I get a drug called Thiotepa, which requires me to shower several times throughout the day and afterward to prevent the skin from being burned as it can come out in my sweat. Naturally, I follow my orders trusting that the Good Lord has placed me here in the care of these wonderful doctors for a reason.

...and hope does not disappoint us, because God's love has been poured into our hearts through the Holy Spirit who has been given to us. (Rom 5:5)

-from the RSV Catholic 2nd ed.
This and the Douay-Rheims are really the best two translations available with the 2010 NIV update and the NKJV running close behind as newcomers to the biblical realm of scholarly translation attempts, in the name of ecumenism. Although Protestants still refuse to translate 'full of grace' properly in Luke 1:28, these are very readable translations, just as is the evangelical ESV (my favorite evangelical translation) all of which have put 'virgin' back as the correct translation of Is. 7:14. Maybe St. Jerome knew a thing or two about Scripture after all!

Please keep your hands and arms inside the vehicle at all times....

Once the bars come down and the roller coaster car starts moving it's too late to get off the ride until it's over. It started today as I was cleared by my doctor for admission. With every beat of my heart I can hear the chain underneath the car pulling me up this ride's initial incline, clack! clack! clack! instead of the regular ba-dum ba-dum. This morning I signed my consent form, legally releasing the hospital from any liability in the event of the unexpected. Clack! Now I'm doing laundry and packing my overnight bag, my laptop, and some books for what is going to be a four to six week hospital stay. Clack! Clack! Once I get my room assigned to me and the treatment begins the car will be at the top of the hill and the tracks will creak and moan as I prepare to be released for that first long downhill drop. The only thing left for me to do now is throw my arms up in the air and enjoy the ride!

Of course, I'm glad my heartbeat doesn't sound like coconuts!

But what about second breakfast?

February 24, 2011 is the date of my Stem Cell Transplant which should rid my life of cancer permanently. Although doctors don't like using the word cure, provided the procedure itself doesn't kill me, I should be cured. Having been diagnosed with leukemia (ALL) back on May 15, 2009, I was put into complete remission at home in El Paso by June 8. Dr. Sumit Gaur is my home oncologist and he is a very capable, caring man. He referred me to UTMDACC, M.D. Anderson in Houston and I have been under the expert care of Dr. Deborah Thomas ever since. Finally, after a year and a half, my medical team has decided that it is in my best interest to proceed with a bone marrow transplant while I am still disease free. Dr. Partow Kebriaei has taken over the responsibility of managing my disease with her world-class transplant team. I will be admitted Tuesday, February 15 to begin the preparatory regimen of marrow-ablative chemotherapy which will effectively kill me. Nine days later, on the 24th, I will receive a transfusion of donor stem cells harvested from my very own mother. Her stem cells will hopefully graft within two to four weeks and begin making blood for me. Until that time I will be dependent on the donation of blood products by generous members of our community. After engraftment takes place I will be closely monitored for a few months until the doctors deem it safe to release me back into the general population. My bone marrow, and my life, will have been rebooted.

In this blog I shall chronicle my treatment and recovery, and also perhaps some of the more interesting anecdotes which happen to cross my path.

Since this is a second chance on life for me, I can't help but be reminded of the witty dialogue between Pippin and Merry in The Lord of the Rings. Peter Jackson's version of Tolkien's Fellowship of the Ring has the following exchange between Pippin (Peregrin Took played by Billy Boyd) and Merry (Meriadoc Brandybuck played by Dominic Monaghan) as Stryder (Lord Aragorn played by Viggo Mortensen) prods them onwards:

Aragorn: Gentlemen! We do not stop 'til nightfall.

Pippin: But what about breakfast?

Aragorn: You've already had it.

Pippin: We've had one, yes. But what about second breakfast?

[Aragorn stares at him, then walks off.]

Merry: Don't think he knows about second breakfast, Pip.

Pippin: What about elevensies? Luncheon? Afternoon tea? Dinner? Supper? He knows about them, doesn't he?

Merry: I wouldn't count on it.

-from MovieMistakes.com

I know I've had my breakfast, but can I have seconds, please?