RangiUnit4Life

"Judge your success by what you had to give up in order to get it."

I came across that quote recently and realized there couldn't be a better way to describe what has happened in the last few days here, especially yesterday, January 6th, 2012 aka Transplant Day. They consider that day a second birthday for survivors, so when the infusion of the donor marrow was finished, the nurse said "Happy Birthday!" to me. By that time I was so exhausted, I couldn't even force myself to respond with a thank you and picture a day when I would look back at this time period as a relatively healthy person, because to me that day is eternities away.

Days 3, 4, 5: Radiation

Following days 1 and 2 where I received almost crack-level dose of the chemotherapy drug Cytoxan, I started receiving Total Body Irradiation (TBI, Google it and read the side effects before you read on, it'll make much more sense), twice a day for about an hour each. They would take me down to Radiation Oncology at 7:30am and lay me down on a stretcher in front of the machine that projects the radiation onto the patient from far away. I would lay on my left side for that whole hour, in a room where the temp is to 50 degrees (at least that's what it feels like) and would not be allowed to even more a finger. When the machine is actually on, I would say you mostly feel nothing, although with more and more sessions I could swear I felt the x-rays penetrating every sort of tissue in my body and destroying everything in their way. When I would be finally done around 9:00ish and come back to my room, I had only enough energy to go to the bathroom and then collapse into my bed again. The first day of radiation, I woke up at noon and squeezed in a workout on the treadmill before the afternoon session which started at 2:00pm. That second session was different, because they use lung blocks to try to protect your lungs at least part of the time, but it meant laying motionless on that frigid stretcher for an extra hour so that they get the exact positioning of my lungs in reference to the machine and take x-rays to figure out exactly how big the blocks should be. Those longer sessions were the kind of times you just sit there and wonder exactly what level your body is being destroyed at. I would try to not look directly at the machine in order to try to protect my eyes, but then I realized, no matter what I do I was at the point where I couldn't protect myself from the possibly lethal toxicity of that machine. I knew it was killing me at the cellular level and when you're sitting motionless with nothing to do but wonder about what's being done to you, your mind will tell you to flee. I wondered if it was too late to get out of it, and whether I should just run away from it. I wondered, by signing the consent form for radiation and BMT, had I signed my own death certificate? There was a lot of back and forth between yes and no for radiation for my transplant by the doctors, but they convinced me I needed it and that the benefits outweigh the risks for my case. When I was actually in those rooms getting the life sucked out of me, it took every ounce of mental energy to tell myself to restrain myself onto that stretcher. That's why during those 3 days, all I could do was lay in bed and try to sleep, but the pounding headaches wouldn't even let me do that. Therefore, I shall add these to the list of the great and many Infamous and Unfortunate Days of My Life, the kind where I was driven almost to madness and couldn't help but lose part of my faith in humanity and life.

Day 6: Transplant Day

My Mom and my brother, the donor, came into my room at 9:15am, to see me before the procedure. I told my bro good luck and hoped that he wouldn't be in there for too long. They ended up delaying his surgery for 4 hours, which meant that him and my Mom sat in the waiting room for 4 extra hours, before anything even began and they heard people screaming in the back. From their understanding, they thought they were waiting in the area where all the surgeries are performed on bone marrow donors, so the two of them sat there and thought the same painful stuff that made the other donors scream was about to happen to my brother. Now, my Mom is by far the strongest person I will ever know and she has withstood many, many injustices in her life, but yesterday I saw her so stressed out that she had to to the urgent care herself to see she felt so sick. When they finally called in my bro at 2:00pm to start preparing him for the procedure, my Mom came up to try to rest for a little bit, and I realized how hard it was her for to see not just one, but two of her babies on a hospital bed. There has only been one other time when I have seen my Mother shed a tear during my treatment and that was at the first moment I told her I had leukemia. Since then, until yesterday, she has dealt with everything with a huge heart and immense patience, but I knew it broke her heart yesterday to know how much pain my brother will feel even though he was doing such a great deed. To watch me go through so many painful procedures, and now to see my brother have to do the same broke her down and when I saw that her on her face, I felt more helpless than I have ever in my entire life. Her and I had a discussion at some point yesterday where I realized how similar we are in the way that we think. We were discussing how strenuous the last two years have been for our family and she said, "all I ever wanted was for God to give my children a life easier than mine, but I guess it was foolish to wish that."

Our entire family would wait for another 4 hours before we heard from the doctors about what happened in that Operating Room. By 6:00pm, the 5 of us waiting to hear about my brother were imagining all kinds of pain he must have felt for those hours and what sort of condition he will be in now. We were finally allowed to see him at 6:30 and that's when the nurse told me he was given full anesthesia, even though the plan was to only numb him from the spine down (that's what we were told, hence, all the tension about him feeling the pain during the procedure) meaning that he would be awake for the whole thing. The entire thing was only supposed to take about 1-1.5 hours, but for some reason, it took them longer and they also drew out more marrow than planned, 1.7 liters exactly. That's almost half of the entire marrow content he had. I don't understand why at Johns Hopkins they still do a surgical procedure to draw it out as opposed to giving people growth hormones and then collecting the marrow from just your blood. That would involve a procedure just as simple as a blood donation. Most hospital these days, use peripheral stem cells rather than actual marrow for transplantation.

Anyway, I finally got the big bag of donor cells by 6pm and it took almost 11 hours to infuse the whole thing into me. It wasn't a surgical procedure, they just gave me the marrow through the IV pump going into my catheter, same way that I get chemo. During those 11 hours, I had to be monitored very closely and they took vital signs every hour, meaning I couldn't really sleep. Meanwhile, my brother was in the recovery room until 2am last night and then he was provided a room in the hospital for him to stay at until he was strong enough to be able to walk again. They gave him pretty good pain meds during that time to help with the sudden onset of pain that almost shook him when he started fully waking up from the anesthesia. My parents were finally relieved to know that one of the longest days of their lives was finally over, but we all knew that none of the 6 of us will ever forget stress caused by this entire situation. During the last 2 years of my life that we've been dealing with cancer treatment, never has a single member of my family complained about having to spend so many nights in the hospital with me or being told to run around looking for this and that and being yelled at by nurses and doctors for no good reason. They have felt many of the same emotions that I have during this time and I know that if easier days do come by, the 6 of us will be so happy to be able to just be at home with each other. There are many times where I've wondered what I would do if another person in our family get a life-threatening disease like this that involves repetition of the same stressful times...all I can say is that if that actually happens, I will blow this whole planet up, because that's the kind of anger injustice brings about in me. Believe me, I have that sort of animosity hidden somewhere that I choose to close off and put away and that's why most people who know me can't imagine that sort of a side to my personality. When you mess with the Rangi Unit though, I won't even think twice about bringing it all out.

THE KEY TO MY LIFE....

P.S. My nurse from yesterday suggested this website to me about a BMT - Leukemia survivor who received the transplant here a few years ago:
http://theregoesmyhero.org/

Beg/End

I always wish I wrote more, but the last few days have justifiably been more about trying to live it up as much as possible rather than sitting down and sorting out the commotion in my head. Starting the transplant on the 1st of January, a few people have congratulated me on taking this step with the new year, but I actually feel nothing special about. The main reason why is that I still have no idea how it's all going to turn out in the next few weeks...within this small time frame, I will know whether the process was successful or not. Whether I'll get out of here in one piece or not.

What has the anticipation felt like? Actually there wasn't much time for anticipation...the last two weeks at home were just so hectic, because I made it a point to meet up with everyone and see them before I left. I suppose I was planning on covering all my bases: what if this is the time last time I get to see these people; what if this is the last time I'm in my house with my family, etc. Why did I have these thoughts? The conversations with my oncologist and the radiation oncologist were all about these what if's. The only answer I ever got was, "we can't predict the outcome, it's a risk you have to take, it's your best bet for a cure at this point." Even going back and forth between the radiation doctor and the BMT oncologist, there was disagreement as to whether we should do radiation based transplant or chemo only transplant. During this time, I had to decide whether I want to do total body radiation or not. The dilemma was, yes, radiation guarantees a lower relapse rate after transplant, but it also makes you more sick during the transplant and has worse long term side effects, such as another cancer. Basically, I had to pick my own poison. Either I risk the leukemia coming back and killing me even after the transplant if I don't do radiation or I risk another type of cancer springing up at some random point if I do do it and make it through. I had a month to answer this question and the back and forth between the two options was enough to make me want to quit altogether. It's cruel that I have the power to choose my own poison. I have to be the one to decide whether I want the leukemia to come back and kill me or another tumor later down the line. As a cancer patient, your life starts to deteriorate step by step and start losing options, such as planning out your future, whether you'll have kids, etc. Even though people tell you things (mostly to make themselves feel better) like "you'll get through it and it'll just be a thing of the past soon," you can't imagine being able to live the same way again (pre-diagnosis); there are some lucky cancer patients who don't relapse, but for the majority that do, there is no going back to the same way of life that you once lived. You always carry around this burden on your shoulders - the fear that even though currently I'm cancer-free, I can't plan the rest of my life, because that in itself will be like jinxing myself. I'm at the point where I have to make the best out of whatever I have left my in my body, mind and maybe soul...but every time they perform unbearably painful procedures, a little of that dies also and I shed less tears with repetitions.

I just finished the movie 50/50 (google it) and it wasn't actually as corny as I thought it would be. There were a lot of issues it addressed ranging from how a young adult feels hearing the words "you have cancer" to going in for a highly complicated procedure such as a surgery or transplant. Even little things like how it feels to shave off your head or when you meet someone new were discussed, which I thought was handled pretty well. I'd recommend it.

Day 1: 1/1/12

Started chemo - cytoxan (cyclophosphamide), high dose, along with IV steroids and the basic hydration stuff (saline). They also gave me IV Ativan (anti-anxiety and makes you very sleepy) as well as Fennergen (reduces nausea and makes u pass out) along with the chemo. Both of these made me so groggy that I was knocked out by 10pm, which hasn't happened in months.

Everyone in this unit is doing bone marrow transplants. I was walking around outside in the hallway and went past this lady's room who seemed very, very ill. There was a team of doctors, nurses and other staff just surrounding her. There was also a police officer right outside her room and I couldn't help but wonder that was just in case she doesn't make it. A couple laps later, I couldn't even walk by her room, because so many people had gathered around and I was left to wonder whether the worst had actually happened.

Posted above is the schedule for my stay here. Days 1-5 are negative, because they're before I actually get the transplant and the days after that are positive.CY - stands for Cytoxan (chemo drug) and TBI stands for total body irradiation which starts on day 3. The actual transplant is on the 6th day, when I get the donor cells from my brother. That's also the same day that he gets the surgery done in the morning. Then I have the weekend off and the following week, I get two more doses of chemo and that's it. After that we sit and wait for my blood counts to drop to zero, ideally wiping out every cell I have my bone marrow and come back up, which will mean that the new marrow from my brother is engrafting and producing healthy blood cells. The time period between now and when my blood counts start to increase is basically the danger zone, meaning if I catch anything during that or if something from my own body attacks me, I have little to no chance of withstanding it.


Expect daily posts as now I have no life beyond this room. Also, I'm gonna be totally wiped out when I start radiation, so this will be the best way to keep everyone in the loop so that they don't freak out if I don't answer my phone.

Full-time job

Exhausted. Bone Marrow Transplant (BMT) Pre-Evaluation since last week, up until the admission date of 01/01/2012.

Pre-Eval includes individual appointments for each one of the following tests:

• Blood tests everyday (yesterday they drew 21 little tubes from me and 17 from my brother)
• Bone Marrow Biopsy
• Lumbar Puncture - chemotherapy in the spinal column aka brain
• Physical (retarded)
• Pulmonary Exam
• CT Scan - sinus/chest
• Catheter/Central line inspection/dressing change
• Radiation Oncologist Consult
• Dental Exam
• EKG
• Heart Scan
• BMT Education Class 
• BMT Simulation
• Consent appt.
• Follow-up with attending oncologist at Hopkins
• Meeting with the Hopkins BMT admission office

This doesn't include the two hours it takes to get there and come back every day or all the appointments my bro also has with them (most of the same tests as me, but at different times, leading to us spending the entire day there usually.) I could have just stayed in Baltimore in a hotel for the two weeks before admission, but honestly, I already hate Baltimore. I'll take as much time as I can get at home, so that at least I can see everyone before I go in even though I didn't want the last two weeks to be jammed pack and stressful like this. Just the beginning of all kinds of pain. 

Conceited

Total days spent at INOVA Fairfax since Dec '09: 159

That includes 6 cycles of chemo and 2 trips to the ICU. Do you understand what that means in terms of how many drugs have been processed by my body? I have no idea how my organs still function normally...this is marvelous. The worst damage that's been done is at the bone level and I know this because the last two days at the hospital this time were absolutely nasty. I did not sleep at all for about 48 hours despite being on pain killers AND 50 mg (double the dose since the previous post) of IV Benadryl at the same time...just for context, if that combination was given to a normal person, there's no chance they would not be almost unconscious. Late afternoon on Wednesday, this throbbing pain in my back attacked me almost out of nowhere as I was sitting in bed and the pressure was so intense, I had to hold my breath in hopes that it would only last for a few seconds. Negative. The throbbing continued almost at the same pace as my heartbeat and I found myself holding my breath a lot. This has never happened to me before. I was so entirely confused as to why the Neupogen shots were causing pain of this degree and tried to describe this to the nurse. The first pain killer she offered me was Diloted and my reaction was, ok, maybe let's calm a little bit. I have never even had Morphine before, so maybe we should give this a few minutes and then reassess whether I need something that strong. A few minutes later, I said to myself, why not? My head was throbbing, my back was throbbing, my ribs were throbbing. I got up to walk to the bathroom and my first thought was, if I by any chance I fall or run into something right now, my entire skeleton would disintegrate like a house of cards and my bones will fall into a pile on the floor. Every 5 minutes or so, I imagined my body blowing up from the pressure inside my bones, because it really felt like a bomb was ticking in my core. I tried to convey this feeling to my nurse and she in turn tried to explain this to my doctor and the son of a bitch said: we can't give her Diloted...just start with Oxycodone, because if it's something more serious than just bone pain caused by the Neupogen shots, I don't want it masked. Should have kept my mouth shut and said nothing more and just enjoyed the damn Diloted while I had the chance, because the oxy definitely did not work. They gave me another oxy, but still, nothing. I spent that entire night staring at the ceiling, holding my breath for long periods of time while the pain slowly tried to drive me to insanity. The nurse couldn't have given me another pill for at least another 3 hours, because I already had two in my system. When she came in at 5am to draw blood for the day, I told her I never slept. She offered me Ambien, but I refused it, because I knew it wouldn't work. Ambien is like a sugar pill to me now. She then told me a story about a patient, also young, who was once given two pain killers, followed by 50 mg of IV Benadryl, followed by Fennergen, and finally high-dose Ambien and he still couldn't fall asleep. Hearing this was more comforting than any pill she could have ever given me. I suddenly realized, out of all the rooms on that floor, at least half of the patients must also be lying awake in pain. Not only does the physical pain take a toll on your body, but the drugs you take in an attempt to get rid of it cause the most frustrating drowsiness, because falling asleep always fails, so you get stuck in this groggy, in-between stage that you just keep adding to because every day you take more and more drugs, but get less and less sleep. THEN, some nurses have the nerve to walk into your room mid-afternoon as they see you laying there with your eyes closed, trying to desperately squeeze in a nap and say, "WOW you slept the whole day?!" If only I had a gun for moments like these, there would not be even the slightest hesitation.

That morning, I prepared to beg the doctor to let me go home, because I knew I could not stay there another day and lay awake day and night, hoping for the pain to go away. The nurse came in and told me that my neutrophil count (ANC) increased from 0.3 to 1.6 (x10^3) and I almost jumped out of my bed. The condition for them to let you go home is that your ANC count has to be greater than 1.0. This means, my body produced thousands of cells overnight and believe me when I say I felt it as each one of these bastards divided and released into my bloodstream. Worth the pain? That is the biggest question of my life - the bane of my existence. The only thing I was afraid of now was that the doctor might say they need to monitor me due to the continued throbbing, but THANK GOD, he came in and said this instead: "I think you're just having really bad bone pain, take some Tylenol and I'll sign your discharge papers." I could not have heard words sweeter than these. I wanted to give him a hug. Bipolar? Yes. 

I'm sure everyone has experienced some sort of pain in combination with sleepless nights in their lives, but it takes a skilled thinker and an almost unreal ability to remain calm to get through a night like that one. That is exactly what I have. I don't understand how I don't shed one tear and withstand enormous amounts of physical and mental torture and still manage to be one of the most emotionally stable people I know. How is it possible to be this wise? You couldn't train someone to be a better cancer patient than me. It's as if my brain and body were designed for this job. It freaks me out every day that even after the worst of the worst moments, the kind of stuff that turns people into psychologically unstable and psychotic, I can bounce back almost immediately and still even communicate effectively and relate to people. They mostly have NO idea what kind of brain power, forget physical abilities, it takes to undo the damage I incur every day. Sometimes I do wonder though whether I keep throwing my problems into a ditch I have somewhere inside and one day it'll all come out and destroy me. I doubt it. I think if that were to happen, it would have by now...or maybe I just jinxed myself for the next step? I will say this though, people say some dumb things to me. At the worst times, too. For example, today at the doctors office, the medical assistant told me to be careful and avoid sick people so that I don't get sick. I had to stop myself from bursting out in laughter, because hearing that for me is like someone telling you, OHHH, make sure you eat, or else you'll starve. REALLY? You don't think I know this after two years of being in this same glorious position...This is by far the most annoying thing you can ever say to me. I hate when people give me advice in general. I don't need it. I already know everything there is to know about life. I have yet to make one wrong decision since 12/16/09. Slightly unhealthy, but true. Another example of grossly obvious statement made to me: the most important thing right now is your health. I could not manage a response for that one. 

Why so conceited? There is no other way to be able to the stand the anticipation of what is to come next. I need to fill my head with as much confidence as a douchebag before I go to Hopkins so that when I walk into the BMT ward, they know my only option is success.

Being home: When I walked into my house, I could barely climb the steps at the front. This is always the biggest test of how much strength I have lost and this time, I felt like I lost almost everything. My head was spinning and my biggest fear was I wouldn't be able to fall asleep, but somehow I did. I slept for 8+ hours that night and woke up with no pain. I've been home for only 4 days, but the progress I have already made in terms of being able to eat and gaining my strength back is enormous. I can't even explain how this magic happens every time, but all my bodily functions start returning to a normal rhythm when I come home. To think that I have almost 4 weeks off before the transplant begins...this is going to be the best vacation ever. 

Thanksgiving Day Dinner: two transfusions of red blood cells. Get in my bellayyyyyy.