CHAPTER 16: DECISION REACHED!

The future is no longer a given.

Each time its uncertainty is acknowledged,

my heart speeds up, my breathing rhythm stutters, I gasp for air.

Sudden attacks of panic.

~from One-Hundred Days by: David Biro

Walking through the doors of MDA center was like being at a very busy airport. People were swarming into and out of the building in ridiculous numbers. Outside the doors, they had at least 10 valet attendants parking the cars that lined up the curb. Once inside, we were greeted by a grand lobby with marble floors. Directly in front of us was an information desk, while to the left was a café with a sitting area, as well as, of course, a Starbucks concession. There were people from all nationalities and countries, and we heard so many different languages. We asked for directions to the Lymphoma Center floor-we were told to take elevators B up to the 7^th floor-but only elevators B will lead there; taking any other letter of the alphabet will only get us lost in the maze of this place.

Me and sister followed the signs and made our way to elevator B and up to the 7^th floor we went. We stepped into the Lymphoma Center lobby and soon we made our way to two seats to wait our appointment with Dr. Wizmaster-the Lymphoma specialist. Normally, sitting in Hematology/Oncology waiting rooms, I would be trying to dodge the stares of patients much older than I, who would probably be wondering why such a young person was bald and sitting amongst them, but not this time; I did not feel out of place here. Because this was specifically a Lymphoma Center and not just a general all-inclusive hematology/oncology department there were a number of young-adult patients in the waiting area with me. Lymphoma sadly afflicts a big number of young-adults under 40 years old. My sister and I were eventually called back to a nondescript patient room. First, a sweet young Physician’s Assistant (PA) came into the room. She talked with us and examined me. She told us she would be back momentarily with Dr. Wizmaster.

His arrogance entered the room ahead of him, Dr. Wizmaster-an expert in the Lymphoma field with 30+ years of experience- introduced himself. He first went through his CV verbally with us, just in case we had any doubt who we were addressing. I think I got a chance to ask one question and then for the next 50 minutes sis and I were bombarded with facts and statistics about every study and research done on NHL and specifically DLBCL. I told myself this was great, after all I am a scientist; I came here to hear the facts about the research not to be patted on the shoulder and told “everything will be all right Nancy.” Still though, I searched Dr. Wizmaster’s face and voice for a hint of hope or optimism about my case and…….NOTHING! He sounded like he was talking to someone who had already died. He was gracious enough though at the end to say, “you have 10 min. left of your one hour appointment, do you have any questions?” and then he shut up long enough for me to ask one.

I asked: “my PET scan showed that I’m in remission after the last salvage chemo, do you think I need more rounds of chemotherapy before the stem cell transplant (SCT)? Why do I have to go through the SCT transplant? Maybe I won’t relapse.”

Dr. Wizmaster leaned forward in his stool and looked me straight in the eyes with his empty expression and said, “That is very uncommon. I find it hard to believe that you are in remission after only 3 salvage chemotherapies, and if you are indeed then YOU ARE VERY LUCKY.” He then continued, “You do realize how aggressive DLBCL is? It is one of the WORST types of NHL in terms of aggressiveness and how quickly it progresses. In fact, I think you might need an allogeneic transplant (donor cells) not an autologous one (my own cells).”

At that, the little flickering light of hope in my brain went out. It was as if Dr. Wizmaster took all his research papers with their figures and statistics and hung them over every window of my brain blocking any light from seeping in and creating complete darkness in my small sad brain!

At the end of our appointment I asked them to try and get me an appointment to speak with a SCT doctor. We still had 2 more days in Houston, and I really needed to get the opinion of a transplant specialist, especially since at MC I was told I need an autologous SCT. Dr. Wizmaster said he cannot speak for the Bone Marrow Transplant specialists on whether they would agree that I needed an allogeneic transplant. We were told it would be very difficult to get us in to see someone since it was very last minute but they would try.

Sis and I left MDA that afternoon and I realized once back in the hotel how badly Dr. wizmaster had gotten to me. I was feeling depressed, even though I was joking about it with Sister and laughing about how ridiculous Dr. Wizmaster was. I was thinking about death and dying more than I liked, which is why I really wanted to get that other appointment in hopes that the SCT specialist doctor will restore at least a pea-sized piece of hope to my mind.

The next day we waited all day to hear back from MDA about the appointment but nobody called. I finally called MDA in the evening around 8pm, and I was told I had appointment the next morning with Dr. Albert-the Bone Marrow Transplant specialist.

Dr. Albert was a young-looking handsome hematologist, probably in his late 30s or early 40s. His demeanor and attitude made up for my bad day with Dr. Wizmaster. He was very intelligent and informative but yet also encouraging. He did confirm that I absolutely needed the SCT because my risk of relapse would be very high without it. However, he agreed with MC and Dr. Scotty that at this time I needed the autologous SCT.

Dr. Albert told me that I was the 3^rd medical student he had seen this year alone who was going to have a Stem Cell Transplant.

Dr. Albert: “I don’t know what it is, it’s weird.”

I replied only half-jokingly: “I do, it is medical school. It gives you cancer.”

Dr. Albert: “well who knows? We still don’t know the exact role of stress in cancer.”

So there you have it folks, the cause of my cancer is >>>>> MEDICAL SCHOOL!!!

Sis and I made our way back to Arizona, and the preparation for my autologous stem cell transplant was under way…

And He said to her "Daughter, your faith has made you well;

go in peace and be healed of your affliction

Mark 5:34

NOTE:

I would like to apologize for my long absence from blogging. I started back with my med school in April after a long hiatus, and have been extremely busy trying to get back into the swing of things. I had a lot of stuff to take care of beforehand. I also went on a vacation before I started.

I know being busy should not stand in the way of a writer, and I'm trying not to let it. I do desire, more than anything, to continue writing and sharing my story. However, I know I will always be busy and tired because med school is not an easy feat.

So, I am going to make a promise to myself to write at least one chapter each month. I will try my best to keep that promise!

I appreciate your continued support of my writing and my blog. Please keep coming back, because the story is not over yet...

CHAPTER 15: DECISIONS...DECISIONS

Ok-remission achieved. Next stop: the stem cell transplant (SCT).

But, doubt had already started creeping in; slowly inching its way into my thoughts and making me question the SCT choice. To Dr. Scotty it was not even a question. He was sure that I needed to get the SCT to maintain my remission; he said my chances of relapse are really high if I do not get the SCT. That did not satisfy me. I argued back that he is basing that on statistics of patients who had clear-cut cases of being refractory or relapsed to treatment. After all, the SCT is done for Lymphoma patients only when they don’t respond to the chemo treatment or they relapse after hitting remission. My case was different. Was it really refractory? I questioned. Yes, I did develop new tumors while going through the first chemotherapy treatment, but that was because as it turned out I had a different (or mixed) kind of lymphoma that required a different chemo regimen for me to respond. After we utilized the second chemotherapy regimen, I did achieve remission. My case is clearly an outlier, but they were treating me by the statistics, I kept arguing. Dr. Scotty heard my arguments and acknowledged that my case is different, but they have to go by what is out there, what has been researched and studied, and apply it to my situation even if it might be not exactly the same.

I wrestled with the idea of just going through with the SCT, but I was not comfortable with that decision yet. However, I would be ok with the decision once I got further confirmation of its necessity. I needed to seek a second opinion from a big cancer research center. I told Dr. Scotty that and he replied with “yes, go get that second opinion. At this point it would make me feel better too.” Poor Dr. Scotty, he has to put up with my questioning of every little step in my treatment-I had a feeling that I am probably his most difficult patient! I told him I wanted to go to the cancer center in Texas (MDA). He said it should not be a problem, and he will try to get me an appointment as soon as possible, so that we can go ahead with the transplant without much delay.

I wanted to be at peace with whatever decision I made, and I did not want to be influenced by the voices in my surroundings. I was the one who was going to have to live with the consequences of whatever choice I go with, so I should be the one to have the final say. I did seek advice from my most trusted sources-mainly my dad. He is always so rational and logical that it is hard not to seek his wisdom during difficult times. I made up my mind that if the 2^nd opinion confirmed that I needed the SCT then I would go ahead with it without further doubt. However, I dreaded to think about what would happen if MDA differed in view from Dr. Scotty and MC. Then I would really be confused!

After a few phone calls and information transmission between MC and MDA, I got an appointment that was less than two weeks away with a doctor at their Lymphoma Center. I immediately made the arrangements for me and my sister for our trip to Houston, Texas. For some odd reason I was excited. I know I was still celebrating my remission, but there was still a lot that lay ahead of me and I knew that. Yet, I was excited I think because I felt like I was doing the right thing, and I would be content with the decision I would be making as a result of it.

Flying to Houston was a scary experience. I have never been one to fear flying or airplanes. However, this time it was different. I was immunocompromised in a tiny plane full of people with too many germs and too little ventilation. I had not travelled by air since my counts had been low. Needless to say I got a little claustrophobic and was counting the seconds until we landed. And praying that I did not catch anyone’s bug!

We landed in Houston, and I was fine.

We checked into our hotel, and waited for morning to arrive to go to our appointment at the MDA Lymphoma Center...

CHAPTER 14: EMOTIONAL INCONTINENCE

You are, after all, what you think.

Your emotions are the slaves to your thoughts,

and you are the slave to your emotions

~From Eat, Pray, Love by: Elizabeth Gilbert

Life is perplexing…one minute it gets so rough and has us asking for an end to it. The next minute, something good happens and you see us begging for another chance at it, for a few more days, for a few more birthday celebrations! During the hardest times of this journey, when I was so sick I could not even think; so drugged and my brain so fuzzy that I could not even recall events or conversations that have taken place-it was during those time that I wished for an end to it all no matter what that meant. I wished that if I was going to be cured that it would be soon. But, if it was not in the cards for me to recover then I wanted the misery to end (no don’t worry, I’m not suicidal, I’m just a cancer patient.) However, one piece of good news and we have a glimpse at the beauty of life. We quickly change our minds apologizing to the powers out there, asking them for forgiveness for even thinking such morbid thoughts. I believe most people having to deal with mortality on a long-term basis, due to an illness or some other cause, experience such paradoxical feelings. After hearing about the optimistic results in September, I got encouraged. I knew that I was not yet done with treatment and that there was a lot that still lay ahead, but at least now I had some hope-I could go to those treatments and face them with resilience knowing that victory was possible and not just an abstract concept.

My strength and hope was further restored in October after another batch of satisfactory results put me and the people I love on an all-time high! Dr. Scotty planned to administer a 4^th round of RICE chemotherapy before having my body scanned again; however, I really wanted the scan done after the 3^rd chemo round. I had no desire to wait another month before finding out whether the treatment was effective or not. My reasoning was as follows: if the RICE had stopped working and the tumors did not shrink from their previous size then there was no point in putting myself through another round of the same chemo, and it would be wise to consider changing the drug regimen. On the other hand, if-although that was a big IF and not really anticipated by either Dr. Scotty or me-the tumors were completely gone then we can argue on whether or not I needed another round of chemo at all. The only scenario that I could see myself getting round #4 of the salvage chemotherapy was if the tumors had continually shrunk since the last scan but were not completely gone; in that case, RICE would have shown to be effective and another round of it might prove to be exactly what was needed. Thus, upon my insistence and request, I was scheduled for another PET scan on the morning of October 13^th, 2009.

Now let me diverge a bit from the topic to tell you a little about those pesky PET scans. They are not painful or invasive or even scary like MRIs, but they can drive a patient mad. Why, you ask? Well, because when you are a patient with a serious illness, like say cancer, and you know your whole future and well being depends on what this little scan is going to show/not show, then you really do not want to be left alone with your thoughts. Unfortunately, that is exactly what happens the day of the scan. You see, 45-60 minutes before the PET scan is performed, the patient is instructed to sit quietly with minimal movement on a recliner in a small quiet room with dimmed lights. There is of course a reason behind doing this other than the emotional torture of the patient. That reason goes back to how PET scans work. The scan looks for any metabolic activity, and having the patient rest quietly for a period of time would minimize/eliminate false positive results that can be caused by metabolic activity in active muscles. The point is to calm the muscles down so they do not light up and show activity on the scan-that includes all muscles including those around the jaw that can be activated by talking, so talking is not permitted either. A normal PET scan would not light up anywhere except for the area of the heart, because the heart is a muscle that has constant activity that should not be stopped. If, however, a person has cancer or another active condition such as an infection for example, then the affected spots in the body would light up. After the allotted rest time is over, the patient is taken to lie down on the PET machine table and the actual head-to-pelvis scan takes about 20-30 minutes. Anyhow, I found out that the “rest time” was no rest at all-mentally speaking. If I just sat there quietly and did nothing, then my brain would wander to dangerous places that I did not want to visit especially not on scan day! So I had to actively think about other things the entire time to keep my brain from going astray. I had to make up “happy thoughts” or think of completely unimportant things like how nice/rude the PET tech is or even the weather! Yes, those 45 minutes lasted forever, and I would always be so delighted when the door to that little prison would open and light would enter the room-it meant that “rest time” was up. Music would be a great distraction in this situation, but first time I had a PET scan, the tech told me IPODs were not allowed…say whaaat? It’s not like my brain is not going to be active just because I am not listening to music, in fact the music will actually calm it down more. Plus, there was music playing on the overhead speakers-bad music, but music nonetheless. Anyways, as I found out at another scan a few months later that was just a picky mean tech; IPODs did not violate PET scan rules and their use was perfectly permissible.

The morning of October 13^th came, and I went through the PET scan routine described above and hours later went back home to patiently (or not-so-patiently) wait for the results. My plan was that I would wait until the end of the work day, if I did not receive a call by that time then I would call the next morning to inquire about the delay. Around 4PM the phone rings…caller ID shows (and loudly announces-since our phone has voice caller ID as well) that the call is from “MC”. I jump out of my chair and run to pick it up, before I do I whisper “oh please God make it NOT be any more bad news!”

“Hello, can I please speak with Nancy?” said the familiar voice on the other end of the line.

“This is she”

“Nancy, this is Angela (the physician assistant-PA) from MC. How are you doing?”

“Well, it depends on what you are going to tell me”

At this, her tone changes immediately to reflect a happier higher-pitched voice, and I could tell then that it was going to be good news. How good though?

Angela continued: “your PET scan from today shows no uptake, which means you have no active cancer”

Oh my God! Am I really hearing those words?! I was not expecting this at all. My hands were visibly shaking and my heart was racing.

“Seriously? It is not showing anything? It is all gone?” I stammered

“yeah the lungs and abdomen are all clear with no activity. I am glad I could deliver good news to you today Nancy.”

Click, the call ends. It sounds more like a dream than reality. I hung up the phone and my mom and sister are standing right there anxiously waiting for me to finish the call, and tell them the news.

“It’s all gone…the scan was clean” I said as tears started streaming down my face uncontrollably.

My sister kneeled down in front of the chair I was occupying hugging me and crying too. She and mom were both screaming “really? Are you serious?”

My mom had the flu the day before so she could not come near me due to my susceptibility to infection because of my low white blood counts. So she kept screaming at me from across the table saying “I want to hug you Nanous!” (one of my many nicknames) “Oh, why did I have to get the flu now?!”

The three of us were crying (tears of joy this time around), smiling, and laughing all at the same time!

“I have to call dad. What time is it there now?” I said. My dad, who was still working overseas, was 10 hours ahead in time, but he would want to hear this sort of good news immediately.

“it’s 2AM” mom said “but it does not matter, let’s call him”

I dialed dad’s number. Man! My hands were still trembling. I did not care that I was going to wake dad up in the middle of the night, and I knew he wouldn’t either. Of course, dad was happily shocked; he too was not expecting this. I mean no one was-Dr. Scotty said it was very unlikely that the tumors would be completely gone with just another round of chemotherapy. It goes to show that science’ and physicians’ knowledge extends only so far. However, because of the nature of their jobs they are sometimes forced to make predictions that they base on numbers and statistics, but in the end they are just that-predictions. Anyhow, the phone call with dad did not last long since he was still in a drowsy sleepy state. The next morning he called us again. He talked to mom and told her that he had woken up thinking it was all a dream, but then he kept thinking to himself ‘it couldn’t be, I distinctly remember talking to them.’ Yet, he still had to call us to confirm that it had all happened!

Next up on the list were my brothers. My 20 year old brother was in Atlanta in college, and he was squealing on the phone like a 13-year-old girl upon hearing of the vanishing of the filthy cancer (he is going to kill me for writing this about him haha). My other brother was at work and he just wanted to skip his shift and come home; I told him that we could celebrate at night when he got back.

Mom got on the phone next and started calling our entire extended family, and let me tell you, we are not a small family! But I cannot blame her; the news was just too good not to share with everyone. In fact, I did the same with my friends; I started texting people and quickly realized a mass email would be much more efficient. Within minutes I was flooded with texts and email replies. I even felt that some of my family and friends were more thrilled at the news than me, if that is at all possible. It is times like these when a person realizes how blessed they are to have such a strong support system. I was grateful to be the bearer of good news for a change.

One of my best friends, MA, called me a few hours later and said: “I just got out of bible study. I was especially praying for you yesterday and today, and when I saw your text I was like ‘ok God, I get it! You answer prayers.’ ”

“MA, I don’t know if I want to cry, laugh, or smile”

MA replied “we can do it all! I learned a term this month in my neurology rotation that can apply to us right now, we are experiencing what is called ‘emotional incontinence’ ”

I could not think of a better way to describe how I was feeling that fall day in October…

The LORD is my light and my salvation;

Whom shall I fear?

The LORD is the defense of my life;

Whom shall I dread?

Psalm 27:1-3