Dan's Cancer Journey...: June 2010

I was super excited to have set up my 5-Day Chemo treatments at times that matched the World Cup games. I am a vivid soccer player, as well as a die-hard World Cup watcher. I try my best to not miss any games, whether the teams playing are past Champion Cup holders, or simply teams playing in the World Cup for the first time.

I stepped into this cycle thinking it was going to be OK thanks to the distractions of the World Cup. Surely enough, the first 2 days met my expectations. I remember rushing the Nurse at the desk to let me into my treatment room faster to catch the opening game with Mexico and South Africa so that I can express my emotions without worrying about other patients sitting by me in the waiting room. I got up, spoke to the patients around me and asked them if I could change the channel to the TV in the waiting room. They smiled at me and quickly accepted. A few minutes into the game, I get called. Before getting admitted to the treatment room, the Clinical Nurse needs to check my blood pressure, my temperature and my pulse through a finger pinch. While getting all this done, I was still watching the game as the Clinical Nurse happened to be Mexican and was excited herself about the game. Those are moments I'll never forget... This was the beginning of Cycle 3 and the beginning of a World Cup that would do its best to distract my mind from the treachery of Chemo.

While many of you will not agree with me, I was pushing for an African team to do well this year. It was their Cup after all. Africa is a suffering continent, and its economy isn't in the best shape either (for the most part); so a World Cup victory can distract them from their current sufferings and pains -- a bit like myself. But football success for any of their teams can help revive the population, put smiles on their faces, and stimulate their economy even more. I enjoy seeing beautiful football and don't mind the same 6 powerhouses taking the cup every four 4 years, but deep down, my heart was rooting for any African team. I am rooting for Ghana, Ivory Coast or Cameroon, but mostly Ghana as I have some Ghanaian friends and really love their top player Asamoah GYAN. I hope this will be the beginning of better football on their continent.

On to less interesting things.... Cycle 3 crushed me. After having completed the first 2 cycles and getting an extra 5 days off for a total of 26 days for Cycle 2, I had forgotten what it was like to go for the 5-Day run of Chemo.

I spoke to patients who told me the cycles were cumulative....this proved to be correct on all the fronts. Initially I thought they were referring to weight, blood counts, hemoglobin, blood transfusions, fatigue, sleep, resistance -- other things relating to one's health...but I found out that Chemo digs deeper and totally breaks the patient inside out. I will try to elaborate on this throughout this posting.

On days 3 and 4, I was totally broken. The only beautiful thing about this brokenness is my desire and need to think about God, faith and His love for us. During those tough tough times, I get to savor His suffering for us, and how He willingly accepted to die on the cross for us. Suffering for someone else isn't a process any of us go through, and most of us wouldn't do it even if it was for a family member. I started really appreciating what He had done for you and I -- for us, on the cross.

As I was reading through the book of Luke, God showed me in Chapter 6 how those who enjoy the 'good life' may be more easily tempted to neglect the Godly life. This was the struggle I went through for years. I had no problems. I was blessed, and even though I acknowledged my blessings, they were a hindrance to my faith. With good health, a decent financial status, comfort, a roof to sleep under, fun and friends all-around, travel -- the good and easy life, I was unable to really get close to my God nor think about my faith and how strong/weak it actually is. In chapter 6, Jesus shows us that the poor, the weak, the unfortunate, are those who are the most spiritually wealthy....he calls them "BLESSED" as they cling to God, willingly and out of necessity. God loves the meek-hearted.

In verse 20- 26, it is written:

Blessed are you who are poor [...]

Blessed are you who hunger now [...]

Blessed are you who weep now [...]

Rejoice in that day and leap for joy, because great is your reward in heaven.

But woe to you who are rich [...]

Woe to you who laugh now [...]

In my case, God was changing me inside out through my health. There is much to say about my relationship with Christ, as I've known God for many years, but I never really got as close to Him as now. I never got to really delight in His Grace that is never ending, or experience the 'pure joy' that so many talk about. I therefore thank Him for this opportunity and for this blessing to draw me closer to Him. I pray daily and remember to not 'waste my cancer.' If I won't be at my spiritual high now, when will it be?

My prayers also focus on my spiritual stamina and endurance so that my fire remains strong even after all this is over. It's easy to fall in the trap of experiencing a spiritual high for a short period and then going back to the norm. But at this point in my life, my expectations are higher and my relationship with Christ can no longer be the same. It can only be stronger by the day. Endurance is very important and I am actually glad my situation isn't one that is short-term so that I will have time to draw closer to Him in order to be able to stand on my feet once healed. The devil has his ways, and will be prowling....with more aggression going forward, I am sure of this.
1 Peter 5:8-9
"Be sober-minded; be watchful. Your adversary the devil prowls around like a roaring lion, seeking someone to devour. Resist him, firm in your faith, knowing that the same kinds of suffering are being experienced by your brotherhood throughout the world."

I have many ambitions that I hope to accomplish after this trial, and I plan to do them by putting my trust in Him and leaning on His shoulder in everything I do. Writing this here in public or verbally mentioning it is easier said than done. But by His grace, by faith and prayer, and by me staying accountable, I know it can be done.
Proverbs 3:5-6
"Trust in the Lord with all your heart, and do not lean on your own understanding. In all your ways acknowledge Him, and He will make your paths straight."

We're not only accountable about the things we do wrong or the daily sins that might come our way, but by the good and the right things we fail to do. We see this in the Gospels in the Parable of the Ten Minas. It opened my mind to thinking about how I can be an Ambassador of Christ by executing and not just sitting along the fence lines. God has a plethora of things he'd like for us to do, and the more we know, the more He expects -- missing this is wrong too. I guess Im just training my mind to think outside the norm and not just worry about the sins I'm trying to circumvent. The Scripture is so terribly deep and all-encompassing. It amazes me how every topic in the world is covered in the Bible, and the Lord's wisdom and parables apply to our everyday life, 2000 years later. How majestic!

As for my physical fight, it isn't always about being able to eat or drink (although this is never ending), or waking up without a new symptom. I was starting to really get sick and tired of the wires, its smells, its tastes, its feelings...Toxic, poisonous fluids flowing through my blood made me super sensitive to Chemo. Nurses have to flush me several times a day with Salien and Heparin and I always have to move my head sideways, wear a mask or hold my breath in until they are done, to lessen the impacts caused from these smells....

The smells of Chemo were so strong and so present in my body that I could taste it in my throat, and felt the need to shower numerous times a day in order to dissipate the horrendous odors flowing through the wires. The problem was that I was too sick and too tired to go through the headaches of a shower, specially since I have to cover my catheters and make sure no water gets near them. Showers had become difficult, and I try to imagine the light at the end of the tunnel -- the day I will remove my catheters and be able to freely shower, freely move my right arm and not worry about my body sweating. The catheters are somewhat paralyzing.

And when I managed to climb this mountain and shower, it only helped for a few minutes, as Chemo was back, ready to overcome the sensational odors of my Fructis Shampoo and my Dove soap. The smells I was facing may not sound like a tough task to overcome, but let me sincerely tell you that it was breaking me down. And as wrong as this might sound, I can always 'imagine' the odor in my head and what it's like even when Im not hooked to Chemo. Call it Nasal Hallucinations.

The journey's discomforts shift as the cycles go, and the body senses can take so much. I always questioned my family if they were smelling the Chemo, but to my dismay they weren't. As to not endure more sleepless nights and more goosebumps moments from these yucky smells, I put a powerful small fan near my bed, aimed at my face. I was willing to get cold and fight my small fan all night, in order to face-off with a different type of Chemo fight. It was clear that I have become super sensitive to Chemo. I am now dreading the next 3 cycles and am only hoping in the Lord. Other cancer patients might have other fights and struggles, but I seem to be touching upon various, less-talked about aspects of this arduous treatment.

I therefore decided to buy a Gas mask! It took me a very long time to find a decent US one for an acceptable price. The market is flooded with Israeli Masks -- IDF being the more common ones. I couldn't believe it at first, but then I remembered how most Israeli 'hardware' is made in the USA, so it made sense to me ;)
No pun intended, really. Here's the one I picked out:

I'll make sure to wear it with my Army T-Shirt ;)

The mask is designed for continuous usage over a period of 6 days, also taking into consideration NBC conditions (Nuclear, Biological, Chemical), lol. I think Im ready for battle.

My Chemo backpack is another story. It comes with large straps inside to trap the Chemo bags tightly. The bags are also linked to batteries which pump the fluids at a rate that would empty the bags in 24 hours. There are usually 2 bags in my backpack. I thought about buying a new backpack, as the hospital's has been used over and over and is swimming with the same Chemo smells. But instead of purchasing another one, I think the Gas Mask should do fine ;)

During the 5 days that I am attached to the backpack, Im usually stressed out throughout. My catheters in my chest are attached to the wires which go straight to the bag. If the bag falls, is pushed away or recklessly unattended, the wires can pull on my catheters, which would pull on the tubes that are under my skin....A gruesome image, but Ive become obsessed with trying to not hurt myself. You'll find a chair with closed handles right next to my bed. In putting the chair beside me, I am assured the bag can't fall or hurt me during my sleep....When I wake up in the middle of the night to go to the restroom, I use my cell phone to direct my path as to not trip on the wires. This 'tripping' thought never leaves my mind! It's become more than just a reflex.

During the first cycle when I was getting into the car with my Chemo bag for the first time, my loving dad, who usually always likes to take care of bags and trunk space, offered to take the bag from me and put it in the trunk. I looked at him with a grin and told him "You're kidding, right?" He paused for a second (he was serious) until he realized what that would have done...He had his hand near the handle of my bag....lol. I don't think i'll ever forget this incident...

After my 5 Chemo days were over, I decided to stop taking my Methodone pain-killer medicine. From what I hear, this medicine is so powerful that people are willing to pay $10/piece on the Black Market. I had plenty of this medicine. It has to be one of the strongest on the market. It saved me during the initial months of April and May as my pain was intolerable. However, it was also messing with my digestive system and causing me all sorts of pains, from stomach aches to bowel movement pains. Methodone was the reason I was taking a myriad of other medicines; so quitting Methodone would give me lots of freedom -- at a cost. I still felt the tumor at times, and was feeling hurt and 'blue' all over my body. I would also wake up very early due to lower back pain. I was willing to save my digestive system in return for some pain. I was therefore awake at 6am, and was able to watch every World Cup game this cycle. It was splendid and worked out well in my favor. As for the future cycles, I just hope that the tumor shrinks considerably more and that my body pains decrease slowly but surely; I already noticed this pattern...

On Day 13 of this cycle, I went for a blood draw. In the past cycles, by Day 13, my blood results would be considerably better than that of the draw of Day 11. Day 10 is the lowest day in my cycles, and my blood counts are close to 0, meaning an Immune system that is non-existent.
Unfortunately, this cycle, on Day 13, my hemoglobin dropped to 7.7, a level whereby the hospital recommends a Blood Transfusion, but leaves the decision up to the patient. If it dropped below 7.2, it enforces it upon the patient. I was getting very close to these levels. I was very disappointed and sad for a few hours because my body was getting weaker day by day, over the course of the cycles. An average person has a Hemoglobin of 14+. By the end of the first cycle, mine dropped to 9.5, and then picked up to 13 by the end of the cycle. On Cycle 2, my Hemoglobin dropped to 8.7 and then back up to 11. During this cycle, mine dropped to 7.7.

To make matters worse, I had planned a trip to North Carolina and to Washington, DC to visit my sick grandparents and my brother. I was supposed to be in the hospital on Day 15 for more blood draws but wasn't there. I skipped my appointments. It reminded me of the old days when I used to willingly skip classes at times... :) I am sure to get yelled at when I return...but I was needing a break anyways. It had been a 3-month run of non-stop hospital visits and treatments. I anxiously awaited my next blood draw to see where my blood levels had reached.

I didn't tell my grandparents that I was visiting. It was a surprise, and even when my mom spoke to my grandmother, she played along to keep the surprise going. After my parents went in their house and spent 5 minutes with them, I entered the kitchen, tapped my grandmother on her shoulder and put my arm around her. She initially thought it was my father or maybe my mother, but when she saw me, it was a burst of mutual emotions. She was in disbelief and we sobbed to see each other once again.... She had been so worried about me and my illness, and was so upset at my mother for supposedly leaving me behind in TX. That moment of us hugging draws similarities in my mind of the first time I broke down and hugged my mom while telling her "I have a big tumor and that it might be cancer." Those are 2 unforgettable moments.

I love those 2 souls to death, as they are also the source of Christianity in our family. Their unceasing love for God and for each member of the family, as well as their genuineness and values are just beyond me.

While in North Carolina, my catheter dressing was coming off. Any cancer patient with catheters needs to get their dressing changed regularly, about twice a week. This prevents infections which could be a cause for a lot more trouble. I remember leaving the hospital on Day 5 and seeing a woman in the elevator swimming with wires and fluids flowing through her IV in her arms. I asked her what was going on and if she was 'hanging in there'; she quickly told me that she caught an infection and that she had to undergo a lot of pain and trouble to address the issue. Infections still scare me and I hope to not catch one at all!

Anyhow, so by day three of my trip, I was hoping to get mine changed. It wasn't an emergency, but it started coming off and the safer thing to do would be to change it as I had another 4 days on the East Coast. I visited a nearby Oncology center in Charlotte, and came across a receptionist Nurse who could not help because I was not a patient at their center and they didn't want to get involved for liability purposes....this was very understandable. It was a Friday, and she told me that Doctors do not see patients on Fridays. Nurses therefore stay home and the clinic was pretty much empty. A few moments later, the only doctor in the clinic overhears our conversation and tells me to follow him. The receptionist was shocked but happy that the Doctor willingly helped me out of his own good heart. God was making the impossible seem possible, even when I was doubting! This was Luke 18:27 coming to life: "What is impossible with men is possible with God." Anything is possible with God! The doctor and I chatted about my cancer type and my cancer journey and he immediately changed my dressing. I was revived, until my return to Houston. I have no doubt in my mind that God touched this Doctor's heart to help me out. This is His nature after all; He never leaves his children. We sometimes have a hard time understanding this, or understanding to what extent He'll be there for us. But He's there, at all times. Is our heart, mind, and passion for Him always there though?

I was getting a lot of confirmations this cycle from various people sending me Bible verses. A friend in Lebanon sent me a very powerful verse: Romans 8:18: "I consider that our present sufferings are not worth comparing with the glory that will be revealed in us." She sent it during my toughest days as I was getting Chemo. A few days later, my mom reads to me the Romans 8:18-22 passage and reminds me why I may be suffering and that the Glory goes to Him in all circumstances. I was very steadfast about this concept, and accepted it from the day it all began. It's a major force in my body fighting to the end. I don't let go, and I don't fall for too long...as the Lord always picks me up. The sufferings put smiles on my face when I remembered Him. His verses and His words console me more than anyone can imagine. And the confirmations I get regularly strengthen my faith in Him. I am very often amazed at my ongoing positive spirit and overall joy despite this rough experience....but let me remind you that none of this is from me. I doubt I would be half as good/happy as I am today without the Lord's help. It can truly only be explained by His Love and His eye watching over me always. It's something supernatural working in me.This is the truth: I am not exaggerating any part of this story to fill lines in this blog...

As I was reading the Bible very early one morning while at my grandparent's house in Charlotte, I read about Martha and Mary welcoming Jesus to their house and how Martha was so overwhelmed with everything around her, that she wasn't attending to Jesus properly. Two hours later, my grandmother mentions this story to me, in reference to us getting so distracted by everything and not spending time in prayer with her. It's true, we were there for a bit over a day, but we never got the chance to read the Bible together (My grandma and I). Nonetheless, it's amazing how God very often sends people to confirm verses or to confirm thoughts from the Bible, showing He is very alive and very present in the midst of our lives. This isn't by any coincidence, friends!

On Day 15 of this cycle, I got one of the worst symptoms yet. Chemo never ceases to surprise me. During the first cycle, I used to wake up and expect the worse as everyday had something new in store for me. This time, the skin on my head was severely suffering from an aggressive rash. I could no longer sleep properly on the pillow and anything that touched my head really hurt. It felt like my head was burning and itching. Very worrying, yet very painful and very discomforting. On Days 18-19, I had to make a fist of my hand and put it under my neck, carrying my head and not allowing it from touching the pillow. It's funny but true. It was very hard to fall asleep under these conditions, but I think I did...and Im sure that as soon as I fell alseep, my fist fell apart. I know you might wonder why I didn't use an airplane pillow....Well, I didn't have it handy on hand during these 2-3 days ;)

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During the cycle I got to see some special people that I had not seen in a while. One of them is a family friend whom we love very very much. We had lunch with him during the Germany - Ghana game.

Another one is a dear friend from High School. He recently got married to Brooke. It was great to see you guys!!!

Im glad I get about 8 good days every cycle to visit with friends. Here are pictures from other events that took place during this cycle:

Friends from Rice! They've been so amazing while always checking on me....Thank you for all the love!

This dear friend I have known for over 15 years. We met in Lebanon when we were 11 and our paths crossed again in Houston, TX after all these years....Also, an incredible source of support during my journey.