I Don't Remember

I was finally out of the hospital! And it was awesome. I was constricted to a house- but hey- at least I now had 10 rooms instead of one! And I was doing pretty well. Was is the key word here. I had no idea what horrors were in store for me.

Soon my stomach began hurting. And I mean hurting badly. They hoped maybe it was just normal stomach issues and so metamucil became a part of my daily regimen. But it wasn't getting better. If I thought that my Crohn's had hurt, I had no idea what a world of pain I was about to endure. Finally, one night I looked at my mom and said,"I need to go to the hospital".

I had gotten GVHD (graft versus host disease) of the duodenum. Basically, the new fighter cells in my body were attacking my colon because there was previous damage there from the Crohn's. They told me it was likely to happen. I just didn't understand that it would be the worst, and I mean absolute worst, thing I would ever experience in my entire life.

I don't remember much of it to be honest. I was in the hospital from September to November. I remember only glimpes. I was on loads of pain medication. Tons of steroids. Tons of who knows what else. Once, I counted how many pills I took in a day. It was 42. Plus I was constantly on IV drips. I remember the doctors coming in and  trying to talk to me and see how I was doing, but I was unresponsive. I refused to talk and turned off all the lights. I literally sat awake in the darkness. My only form of communication was through my mom. Rarely, I would whisper something to her. Otherwise, she would have to guess at what I was thinking and if I didn't glare back at her, she was correct in her thinking. There was more agonizing pain. More pain meds.

I couldn't sleep. Finally, they put me on Ambien. The first dose was too high and I got up in the middle of the night and fell over a chair. I didn't even remember it happened the next morning. I woke up  with huge bruises all along the side of my body. This was especially bad because I had no platelets to clot the blood. They lowered my dose the next night.

I was still vomiting all the time. I don't think the chemo truly left my body for about a year and a half. I vomited almost every day in that time. And I was so weak. I didn't eat or get out of bed for six weeks. I couldn't because it was too painful or I was too doped up anyways.

I would only get a semi-shower once every few days which basically consisted of wash rags with soap on it while I laid in bed. I hated it because the rags would become cold so quickly. Also, it required me to move just the slightest bit which my muscles refused to do. What really stinks is that to this day I now have PTSD (well probably a milder version of it) to the soap that we used. It was a Dial vanilla brand and if I smell or see it I just start crying. Even writing this here is difficult.

I made sure either one of my parents or Mercedes were always with me. There was only one time during that whole hospital stay that they weren't. And I freaked out. I had to go to the bathroom, but I couldn't move by myself due to my muscular atrophy. My legs and arms wouldn't support me because I had wasted away in the past few weeks. I didn't want to call the nurse because they didn't know how to help me like my family did. I hated being dependent on a stranger and I was so embarrassed. But I eventually did call her to help me anyways. And when my mom returned I cried and cried and asked her never to leave me again. That was selfish. But she understood and she would do the same again.

One of the only other things I remember was a team of psychiatrists coming in to see me. A team. They told me I was depressed because I wouldn't talk to anyone, kept all of the lights off, and refused to move. I didn't say a word to them. I just took turns glaring in their general direction and then dropping my eyes to my lap in embarrassment. In retrospect, yes- I had severe depression. But at the time I was too depressed to see it. And I was too humiliated. There is a huge stigma out there for depression. One that I had back then. It's something you don't ever want to admit to. You tell yourself that you can be happy and that sometimes you even are happy. And when someone says you're depressed you get embarrassed because it feels like an attack on you. They're telling you there is something wrong with your mind. And nobody ever wants to think that there is something wrong with them. But Mercedes was the one to talk me into taking the antidepressants. She said it was worth trying and if it didn't work there was no harm done and I could stop. It's hard to argue with that logic.

But that is all I can recall. My mom says it's good I don't remember a lot of it. It's probably a defense mechanism that my brain is using. I just remember these little episodes. And some of them I didn't even recall by myself. The story of my life came up later. Someone would say "You don't remember when you fell and got so bruised all over your body?". I have one very vivid memory engrained in me from this time though: the image of the dark hospital room. I remember one morning just staring at the little window with the little streams of light coming in my room and hating that light. How could it be sunny out when everything in my life was so horrible and dark? It didn't make sense. I wanted the light shut out.

Reflection

For more than a week now I haven't posted because once again I've been hesitant about what I want to write. This post will be a quick pause in the story of my transplant because the other day someone said something to me that made me think.

My voice teacher, Liz, was talking to one of my classmates, Sierra, about how even though she's a younger student, she has a maturity about her because of her past. Liz said that not everyone has the fairytale childhood and then pointed out that Sierra and I had very abnormal (and not good) experiences in our pasts that made us sing the way we do today. I think I usually try to push this thought out of my head and say that back then, I did what I needed to do. I don't want to think about how my childhood and teenage years were so different from people that are normal. I'm afraid to think too hard about it because then I will have to grieve for my loss. But two things have made me start to think about this more. First, just by writing this blog, I've been trying to be more honest with myself and in my writing. Second, I am starting to watch my nieces and nephews grow and have a beautiful and healthy life ahead of them. And I love that. But it's also a bright and shining example of what a normal, real childhood looks like.

So it makes me sad to think about how unfair it all was which makes all of the questions come out. Why did my life have to be so different? Is there a reason for all this? And the most frequent one- WHY ME? And there is no reason. Sometimes people try to give me reasons like "you are only given what you can handle" and "by going through all of this, you are meant to do something with your life". But the real answer is there is no reason. My favorite people are the ones who, when I ask "why me?", they just say "I don't know. It's so unfair." Because it is unfair. I have been through so much shit in my life and it isn't right. Sometimes I think to myself that karma will come into play and later my life will be the best a person can have. But that is unrealistic and not true. There are things left over from the transplant that will never, ever leave me no matter how hard we try to fix it.

But that being said, I must admit that without everything that happened to me, I wouldn't be who I am today. Sure, I definitely could have done without a lot of it, but it happened and I can't change that. One of my favorite thoughts is the more sadness/hardships you experience, the more you appreciate the happy things. So yeah- sometimes life sucks and there isn't anything you can do about it. And when it does suck, you should take time to appreciate that suckiness so you can fully appreciate your happiness later. I've also gained a serious appreciation for life. I pretty much never let the small things bother me and I hope that I help my friends and family to do that as well. It's a lesson that is hard to learn, but when you do, life becomes infinitely easier and it is an amazing thing. So next time something bad happens- a guy (or girl) you just met doesn't call you back, you get a bad grade, you get into a fight with a friend- first, wallow in your sadness for a bit so you can appreciate it later. But then, get up. It's not the worst thing in the world and will probably not be the worst thing that will ever happen to you. And let it make you better- know that the guy (or girl) isn't worth your sadness, do better on the next test, make up with your friend because y'all are both being stupid (quick tip: in a fight, no one is ever completely right or wrong- it is always both your faults). :)

So yeah- that is what I've been thinking about for the past week. And thinking about it made me upset, but I reflected on it, told myself it sucked, and then brushed myself off so I could move on. I know that these thoughts will come back to me every once in a while, but I also know I can handle it. So why me? There is no reason. But I know it's made me who I am today- who is a pretty awesome person if I do say so myself!

Bald and Free!

Something I forgot in the last post that my mom reminded me of... When the nurse was pushing in the bone marrow she was pushing SO hard. And my central line was pushing back hard, too. Finally, there was so much pressure the huge syringe cracked. Marrow spewed up into the air and splattered across the ceiling, onto me, and onto my bed! The nurse stood there in shock. They apologized profusely and said that had never happened before. We just laughed and laughed. It was hilarious! But now back to the story...

Vomiting. Oh so much vomiting. But also hair. Little bits of hair. It was slowly falling out. Every morning I would wake up and find strands of my hair all over the pillow. I had it cut to my shoulders right before I got the transplant in order to donate it to Locks of Love. So at least it was short strands! But after only a few nights of this, I was like "Get this shit off my head". I had had enough.

Now I thought this was going to be an exciting experience! I wanted to make a party out of it! So I was going to have Mercedes buzz off my hair while my parents and sisters (Carina and Brandan over iChat) watched and cheered on. Of course, they humored me. I had the "I'm sick so I get what I want" powers. So Mercedes happily shaved my head as everyone smiled and nodded along with me. It wasn't until years later that I found out that it was kind of a horrible experience for Merce! I had no idea! I mean, of course she wouldn't like shaving off her little sister's hair. She did it for me, but I don't think she enjoyed it which is completely understandable.

So around Day 10 (10 days after getting the transplant, 20 days in the hospital including the pre-transplant chemo), I started going "Hey!... Hey docs!... Hey docs let me out of here!". I was ready to get out of my confinement chambers. 20 days in one room (with marrow on the ceiling!). I wasn't allowed leave it since I had no immune system and could catch whatever little bug was floating around. I was clawing at the walls! Around Day 13 they said "soon". The next day "really soon". Finally, on Day 15, they said I could go! I was so excited. Not only was I going to be released to go home to Mercedes' house, but I also had the record for quickest release from the hospital after a BMT. The next best was 18 days. And I shattered that record! Most people have to stay about 30 days post transplant at least. I think I may be too competitive. But that's okay because I won! :)

So here's Mercedes again... I figured I put her through shaving my hair off so I should at least let her talk about it!


There are few things more difficult for me than shaving my sister's head. For anyone who knows gena, she is absolutely stunning, and she had the most beautiful hair before her transplant (it has since grown back, thank goodness!). Watching her lose it in small clumps was painful to see, but when she asked me to shave her head, I felt like I'd been stabbed in the gut. I understood her motives to just get it over with, but I felt like I was stripping her of her femininity and more importantly, her identity. As a doctor, I see lots of people with bald heads from various chemo treatments, and to be honest they often look very similar. I did not want my sister to fall into that category in my head, and I think shaving her made me see her in a different light- a little less like a sister, more like a patient. I think this also forced me to realize how sick she really was. Gena has an uncanny ability to present herself as less ill than she truly is, whether its her incredible pain tolerance, determination, or unflagging optimism. And I think my family would go along with it, because we really really wanted to believe that she wasn't as sick as she really was. And for me, shaving her head removed one of her layers of defense, making her seem more vulnerable. 

Furthermore, with a platelet count of zero, I was terrified of nicking her and causing her to bleed! Luckily it turns out they are smarter than that and only let you use a "safe" razor that was less likely to cut her. Phew. 

On the upside, if anyone can pull off bald, it is Genevieve. She of course looked beautiful and handled the transformation with more grace and dignity than anyone else I know. 

Day Zero and a Guest Blogger

Day zero!!! Transplant day!! WOOHOOO!! I was going to be cured and I was excited.
Mercedes was admitted to the hospital. She was going to be put to sleep, have her bone marrow removed from the back of her pelvis bone, and save my life. I hugged her and wished her luck before she left to go get it done. I waited and waited until about noon when the nurse came in with bags and bags of what looked like blood (but was actually bone marrow). They hooked the bag up to my central line and put it on a hanger. It wasn't on any type of a pump because they wanted to let gravity do it's thing and let it go into me at a natural pace.
But gravity wasn't working and so after a few hours of it hanging the bone marrow was going to "spoil" if they didn't get it into me. So to get the last few bags into me, they brought in these GIANT syringes to physically push it into my central line. And by giant I mean a foot long and 3 inches wide. HUGE. I think I had about 7 or 8 of those syringes to get in to me in one hour. So the poor nurse got her work out in. I think the funniest part was that when she was pushing it in, I could taste it. Now most people would think that was really gross. But Mercedes' bone marrow tasted of cream corn and bacon. So I was not too upset about. I got all of my bone marrow and was on my way to a health. Kinda.

So back up a few hours. After I had first gotten the bone marrow, I kept asking about Mercedes and if she was awake yet. How was she doing? Finally after about an hour and a half my mom came in looking kind of upset. She sat down next to me and told me not too get upset and that everything was okay. Immediately I panicked. What was wrong with her? What did they do??
My mom told me that when Mercedes woke up, she began vomiting blood. She said it was because when they inserted the breathing tube, it nicked the side of Mercedes' esophagus or stomach or something causing blood to drain into her stomach. I began to cry. How could they have messed up like that? She was doing an amazing thing for me and they made it that much harder. And the worst part was they took copious amounts of bone marrow because they had "the more, the better" mentality. So not only did she lose tons of blood from the bone marrow, but she lost tons from it was draining into her stomach. She was beyond anemic.
I wanted to go see her. Of course, they wouldn't let me leave my room because I had no immune system. My next solution was to just move her bed into my room, but they wouldn't let me do that either. I hated it. She was saving my life. I wanted it to be as easy as possible for her to undergo, but instead it became a debacle. And she felt so awful. I mean- she had no blood!
She was released late that day (even though she shouldn’t have been, but she’s stubborn and demanded to be released) and she was on bed rest because she was so weak. I finally saw her in person a few days after she had been released and she looked pale and tired- and that was after she had somewhat recovered. She had horrible lower back pain because they went into her pelvis about 40 times (with their giant needles). Her throat and esophagus were raw from the tubes and she was exhausted.
So Mercedes- I'm so sorry you had to go through that. Even writing this it makes me cry. But thank you for saving my life. Thank you for everything that you have done and continue to do for me. I don't think I say that enough. And I love that I will always have a part of you with me.

And now something new. I'm going to let Mercedes describe her experience with what happened. I think every once in a while it will be good to get another person's view.

I am so honored to be a part of this blog post! One thing I wanted to briefly mention was that all the Dullum sisters were tested many years ago to see who might be a good match for Genevieve in the event that she need any donations. Well, I remember clearly the day we were tested: at the age of 12, I walked right into the doctor’s office and declared that I didn’t need the test because I knew I was a perfect match. And it turned out I was right! Genevieve and I have been so close forever, (she is always trying to be just like me) and it only seemed natural that I would be her donor. I remember being so excited about the “harvest day,” or what our family had labeled “D Day,” (Donor Day) because I was finally able to actually DO something tangible for Genevieve, rather than bumbling along trying helplessly to accompany her on this journey. It was funny being on the other side of the table for once, when I was in the OR and they told me to start counting back from 100. I also remember that the IV really hurt! This gave me more respect for what Gen has to go through all the time. She has been getting IVs for most of her life, which was something I hadn’t thought was that big of a deal, and then the first time I had to have one placed it was so painful! Anyway, these were my last thoughts as I drifted off into anesthetic bliss for a few hours.

After the harvest, there were two things that stood out to me. The first was the look on Dave and my dad’s faces when they saw me in the recovery room. They had that expression when you know something’s up but no one wants to talk about it. I immediately assumed it had something to do with Gen, but eventually it came out that I just looked really, really pale. Dave later told me how worried they had been, but that no one had wanted to say anything to me until I was recovering well. I overall felt fine, other than being tired and a bit nauseous. I was then moved to the inpatient unit. The second thing I remember was how vulnerable I felt in a hospital gown. This was yet another way I finally got a glimpse into what Gena’s life has been like. I felt so exposed and open and embarrassed, when really I should have been focusing on rest and recovery.  

I hated this feeling, so I demanded to be discharged the same day as the procedure, changing the original plan of being monitored overnight. They finally relented, and despite being weak and very nauseous, I was released that afternoon. The Percocet they gave me, (72 tabs! Who prescribes 72 tabs for a minor procedure??) made me feel very sick and loopy, and I only took one before I decided on Motrin and Tylenol for the rest of the weekend. Anyway, I also remember talking with Gena via video chat, and being very disgusted by the bag of blood hanging from her IV pole. For some reason, despite my medical background and having watched bone marrow aspirations as a medical student, I had envisioned my bone marrow being thick and of more substance, with important cellular components floating in it (this makes no practical medical sense, but that’s still how I imagined it). Well, as Gena said, it literally looked like a big ol’ bag of blood. I was a bit disappointed, feeling that it did not do the job justice.

The hardest part of the harvest for me was not being able to see Gena for a few days. Up until that point I had visited her every day in the hospital, and it felt foreign not to see her. I was dying to know what was going on and how she was feeling. I guess we’ll just have to wait til the next post to find out!

Chemo Sucks- Like Really Sucks

Well my page has had over 1,000 views. Thank you everyone for supporting me!


So my bone marrow transplant was finally going to happen. We checked in to the oncology floor that would be a second home for the next few months. I had a room with a bed, cabinet, pull out couch, built-in desk, tv, and private bathroom. And around all of that... tons and tons of medical equipment: nurses station, heart monitors, coding equipment (which was never used!), etc. I had already had a central line put in my chest so that the IV drugs could be more easily administered. A central line is basically a huge tube that goes directly to your heart and has two ports- one for putting in IV drugs, one for drawing blood. Central lines can stay in you for months or even years at a time. Anyways, I brought my suitcases, unpacked, and settled in. I had no idea I was heading straight into a huge storm. That optimism I had was good and bad. It was bad because horrible things would happen and I never saw them coming. It was also great because I think my optimism helped me ward off the bad things that could have potentially happened. I have always believed in mind over matter.

They began my chemo treatments on August 12. My first nasty encounter happened that day. I found out that I was allergic to one of the chemo drugs. It made my veins all throughout my body feel like they were on fire for about 30 minutes to an hour. My mouth burned and my eyes stung. And they worst part? I had to receive it three times a day. The doctors had never heard of anyone having an allergy to that kind of chemo. I was the first which somehow didn't surprise us- we were used to me being medically abnormal at that point. I dreaded those doses of chemo. We prepared for it by having my parents bring ice chips to my room so that I had something cold to suck on to soothe my burning mouth. We even tried having the on hand massage therapist (yes- the hospital had a massage therapist) come to my room during one of my doses to see if it would help. But it didn't. I would just recline my bed, stare at the ceiling, and have tears trickle down my face as I laid there and endured the fire running through my body. That burning made the list one of the top 10 worst pains of my life.

After day six of 10 of chemo treatments, they tested my blood toxicity and found that I had already had too much chemo. It was something about my metabolism being slow- how lovely. So for the last four days I did not receive any more chemo and I was thrilled. But it began to take it's toll. After about day seven, I was throwing up every few hours. I didn't want any food and my body began to get a little weaker. But vomiting never bothered me. I would just say "bucket" (they wanted me to vom in a bucket to record my "ins and outs"), someone would hand it to me, I would chuck up whatever food I may have managed to have gotten down an hour ago, hand it to a nurse, and then continue what I was doing. At the beginning, I would read a lot, do Wii Fit, play board games, and surf the internet. It was definitely a tolerable process. And I was optimistic and happy. I was changing my life for the better and I knew that whatever pain I suffered would be worth it in the end.

Finally we got to what was called Day 0 on August 22nd. It was like a countdown. Day 0 was when I finally got my transplant. But even that didn't go as planned...