A whole lotta updating...

OK.... To pick up where my last note left off:

I did get down to Houston and the GND did its job. The PET scan was clean. No cancer in my system. So, Dr. Nieto (Stem Cell Transplant Specialist) wanted me to get the process of the high-dose (HD) chemo and stem-cell transplant (SCT) going as soon as possible because he knew that my Hodgkin's was very aggressive and could come back. Dr. Nieto explained that getting the HD chemo and SCT when you are in remission greatly increases the chances of them being permanent solutions.

1. I had to go into the hospital for 5 days to get a "mobilizing" chemo. Basically, they gave me an ICE chemo without the C. They do this to knock my blood counts down, so they could build them up again. This included a lot of Neupogen… Ouch.

2. So, all of that lovely Neupogen did its job by making my bone marrow over-produce stem-cells. All of those extra stem-cells were kicked into my blood, collected by the apheresis machine (which basically just a dialysis machine but more specific in what it filters out), and frozen to be give back to me at a later date. My age and general health were great assets to me in this stage of the SC transplant because they allowed me to collect the necessary number of stem-cells in one sitting.

That meant I had 4 days of freedom from MDA and Houston that I never dreamed of having and it meant I could go home for Thanksgiving. Have my mom’s amazing turkey; laze around the house for almost a week; attend my buddy’s wedding. Random side note: I just realized that I have been to 4 weddings with a head scarf on to cover my bald head. That’s more weddings than some people have ever attended. And I missed 5 weddings throughout my treatment. You crazy people need to stop getting married…

Had I truly known what I was about to start, I would have savored those days at home even more but like they say hindsight is 20/20, etc…

3. And back to Houston I returned. My mom and I went back down to Houston a couple of days before I was going back into the hospital. I had a few pre-admission appointments. We needed to get settled into the apartment and I needed to pack for my hospital stay.

Oh… I forgot to talk about the apartment. Down at MDA, they have a charity apartment complex called Hospitality Apartments. They are free (one time $40 cleaning fee), you are allowed to stay there for 3 months at a time, and oblivious, there is a long list to get into them. Remember when I went down to MDA in August to get my transplant? Well, I had put my name on the list back then, so in November after being in town for a week, my name reached the top of the list. I actually got the call that I could move into the apartment the same day I was supposed to go into the hospital for the mobilizing chemo. Funny how things just work out like that… So, instead of having to store my stuff in the car and pay for parking at MDA, we just dropped everything off at the apartment. The apartments even had a shuttle to the hospital, so we didn’t even have to worry about paying for parking. Maybe I can look at my August relapse as a blessing in disguise because we would have needed to rent an apartment for 2 months if I had received the transplant back then.

4. On December 6, 2010, I was checked into MD Anderson to get high-dose chemotherapy and autologous stem cell transplant. To be completely honest, I don’t remember much of my hospital time here. So, this won’t seem as bad as it actually was because it really, really, really sucked. But our minds’ are wonderful things, and they do block out terrible times. And hell, I was on a lot of morphine too.

For the first 2 weeks in the hospital, I was ok. I was tired, loopy, and grumpy but ok. The food was terrible and I was extremely bloated thanks to the combination of steroids and lots of IV fluids. I had memorized the daytime TV schedule. But I felt ok.

The first 10 days, I got chemo. Bag after bag after bag of poison was pumped into my body. As you should know from previous posts, I am kind of a champ at taking chemo. We all are good at something, apparently mine is taking chemo.

My stem cells were given back to me on December 17, 2010. It looked just like a blood transfusion… took all of 20 minutes. And I was a bit out of it because of the Benadryl they gave me beforehand (some people are allergic to the preserving chemical they put in it before it is frozen and stored). All of the nurses and hospital staff kept saying “happy birthday” to me because I started a completely new immune system; just like a newborn does on the day they are born.

I’m not exactly sure when the shit hit the fan, somewhere around the 20th or 21st, I just know that it did… big time. One of the chemos I was given in the HD chemo was notorious for mouth sores. For those of you who have had them, you know that mouth sores are annoying but not that big of a deal. And that is completely true, when you have 1 or 2 sores… I had sores from my lips to halfway down my esophagus. I couldn’t eat, I couldn’t drink… I couldn’t even swallow my own saliva, thus would wake up in the middle of the night choking. And the choking would trigger my nausea, and I would vomit up stomach acid (remember: nothing in the stomach). The stomach acid would irritate the sores, so they weren’t healing and they were unbelievably painful. Can we say “vicious cycle”?

I didn’t eat solid food for almost 2 weeks… the only thing I could get down was a carton of milk (200 calories) and I had to force myself to do it. They put me on a morphine drip with a nifty little button to push for extra when the pain was really bad. I vaguely remember one of my nurses saying that my case of mouth sores was the worse she had seen. I was reading the notes from my hospital stay and found out that they have a scale for how bad the mouth sore are, 1 to 4. My case was rated at a 3… yay for overachieving!

I don’t remember Christmas or New Years, just one big foggy haze. I know my dad and grandma came down to see me for Christmas since the restaurant was closed and I remember waking up and seeing my dad asleep on guest bed. The reason for the intense fog around this time is that my immune system bottomed out, as in It Was Gone. Zip, zilch, NADA. Elvis has left the building. Our wonderfully designed bodies have a defense system for times when we have no defense system: our body temperature rises. In most cases, 101 or 102 was the temperature that patients would reach when they were nuetropenic (without an immune system) but my overachieving-self spiked a fever of 104 for 4 consecutive nights. The hospital people were freaking out, they thought I had some sort of infection or pneumonia. At that point, they put me on broad spectrum antibiotics and antifungals. But the high fever was back, 4 nights in a row. After testing for everything and everything coming back negative… they figured that there was no infection and I was just weird.

5. I was discharged from the hospital on January 5, 2011. If I had had the strength, I would have danced my happy ass out of that hospital and clicked my heels on every up-beat. But I didn’t have the energy for that, so I got wheeled out to my car. I literally sat down and enjoyed being in my car, sitting in a seat that wasn’t my hospital bed or a hospital chair. Being outside of those 4 walls of my room and that same freaking hallway I walked at least a 100 times during my one month hospital stay. When we got to the apartment, I went straight to the bedroom and laid down in my bed. I couldn’t believe how comfortable a normal bed felt, even one that was lumpy and had springs that would poke you in the kidneys. After a nap there, I took another nap on the lazy-boy. Attempted to eat something (and failed) then went to sleep for the night.

I wish I could say I slept through the night, but when you are used to being woken up every 3 hours, your body automatically wakes up. Not to mention the insane amount of fluids I was peeing out, I was so bloated by the end of hospital stay that my undies were too tight. I peed off 10 pounds of fluids in 3 days. I also had some issues with my saliva; the sores had effect it and made it really thick. So, every morning I would wake up coughing and hacking and then that would lead to nausea. It was getting better but didn’t go away complete for almost a month after my hospital discharge.

Emotionally, I was a hot mess during this time in apartment. I was weepy, overly-sensitive, and Tired of Houston. I remember driving to the Kroger down the street from the apartment with Mom to get something for dinner that night. By the time we pulled into the parking lot at Kroger, I was falling apart because someone had cut me off and flipped me off. I just parked the car and cried for like 10 minutes, then joined my mom in the store.

6. Dr. Nieto released me to go home January 14, 2011. After my doctor appointment, the yanked out my CVC (catheter under collarbone) and took my first shower in 5 months that I didn’t have to worry about getting the dressing on my chest wet.  Mom and I decided to pack up that night and drive back the next day (Saturday). I drove us home. It was great to walk into my house after a month and a half of not being there. Though, I did have a meltdown when I went up to my room. Maggie, our cleaning lady, had given my room an especially thorough cleaning that involved her moving everything around and out of place, hence the meltdown. These emotional out-bursts were weird. It was like I was an observer in my own body, like I had no control over how I was acting or what I was saying. There was a reason for me being MIA until mid-February beyond the germ-phobia. I was like a ticking bomb and I didn’t want to go off on any innocent bystanders.

7. I distinctly remember going up the stairs to my room that first night. I had to stop midway to catch my breath. I was giving myself a pep talk for the last 3 or 4 steps. I would do one thing, and then have to sit down. It took me 7 hours to put all of my clothes away the next day. The fatigue and weakness were just so unnerving… I was young; I was supposed to recover quickly. It was a slow climb back to “ok;” another slow climb back to “almost normal.”

8. Next thing I knew, it was time for my first set of scans. Some friends of mine and Payam’s had their first baby right around the time Payam and I were planning on going down to Houston for my appointments. It was good, because the new baby gave me something besides my own extreme nervousness to concentrate on. Well, at least until day I got the results. While I was sitting in the waiting room, I talked some poor guy’s ear off and couldn’t stop my leg from bouncing. I think I drove Payam a little insane… sorry bro.

The scan was clean! Weight was lifted and suddenly I could breathe again. Called mom first; she cried (of course). Then send out a lot of texts.

9. Back home in Keller, I decided I needed to speed my recovery up by swimming. Swimming is great for the lungs and I needed it because my lung function was down. Right around this time Mayowa and I started making our plans to go to Hawaii. Suddenly, I had a trip to plan and I could work the entire shift at the restaurant without needing to sit down every 15 minutes. We planned our trip for the week after Independence Day. All of a sudden, I realized that I had another scan right before the trip… what if it was a bad scan? Holy shit… what did I do? Why didn’t I plan this better? And then I decided: I NEED THIS TRIP and I was going no matter what!

10. This time, I drove down to Houston by myself and crashed at Jen’s place. Again… I was utterly nervous by the time I was in the waiting room to see Dr. Nieto, I couldn’t sit still. I was forcing myself to play the card game on my cell phone because it gave me something to concentrate on… But it drained my battery.

The NP walks in and gives me a big smile. I think I melted a bit, I was relieved. Everything was clear and my lung function was much better. I had to get a few vaccination shots and I was out of there. I actually have a brand new shot record. I had their blessing to go on my vacation. ALOHA!!!!

Since my battery was dying, all I did was give my mom a quick call and send out a few texts. Jen took me out a celebratory dinner that night to this awesome Mexican restaurant, I don’t remember the name. But it was delicious.

11. I spent my summer going on trips and working at the restaurant. My trips were Los Angeles, Hawaii, and San Francisco. Time passed, and suddenly, it’s my birthday. The first birthday I’ve had in 2 years that I wasn’t in chemo… I really didn’t know what to do with it. It was good: hung out with James and Payam and saw a comedy show. Great birthday, thanks again guys and everyone that wished me a happy birthday.

12. It is 4 am and I am typing this post up. I am afraid to sleep because I keep having nightmares… my subconscious won’t listen to positive thinking. I am driving down to Houston tomorrow for a Wednesday morning scan and a Thursday Dr. Nieto appointment. You would think it would be easier 9 months out… not yet, at least not for me. I’m anxious…
I think 6 pages of single space typing is enough for this post. Thanks for reading.

Pegah *_*

Update.

Warning: This following note is directly from my diary. So, it is not edited. It is full of cursing. Not appropriate for small children. It picks up right where I left my last note.

Yes, it has been almost a year since I last wrote in here. Been a crazy, fucked up year. Hmm… Where to start?
1. The ABVD chemo didn’t work. Not only did my cancer not go away, it spread to a new area. I now have a new name for my type of cancer: Refractory Hodgkin’s Lymphoma. This really upped the ante as far as treatment goes. I had to get the ICE chemo.
2. Three rounds of ICE chemo. Well, I consider them to be 9 rounds because each one required me to be in the hospital for 4 days/3 nights.
3. Oh Happy Day! The ICE chemo worked for me. I was cancer free. Which meant I needed to get the high dose (HD) chemo and stem-cell (SC) transplant. But I couldn’t get them through JPS hospital. So I had to go on medical disability to get Medicaid so that MD Anderson would take on my case. Took forever to get the ball rolling; forever being about 3 weeks.
4. I forgot to say I had to get another Bone Marrow biopsy done. Fucking Ouch!
5. Because the registration and Medicaid approval process took so long… My cancer came back. I found out the day I was supposed to go into the hospital to start the HD chemo/SC transplant process.
6. Came back home to Keller and JPS hospital.  Have to get 4 rounds (2 cycles) of GND chemo. GND chemo doesn’t like me at all. I feel like shit for almost 5 days. That is worse than when I was getting 3 nights of chemo for ICE.
7. Got my tonsils taken out. When I was down in Houston at MDA, they did a PET CT scan. This is how they found out the Hodgkin’s was back. On that scan, my tonsils lit up a little. They recommended getting them taken out before starting the SC transplant. So I finally, after fighting them for 27 years, got my tonsils taken out. And holy hell, did it hurt. I couldn’t eat. I could barely drink. I literally lost 10lbs in 5 days. And the ear pain! Holy shit… It would bring me to my knees. All I could do was sit there holding my ears and cry.
8. My liver hates me. It is very angry. After 29 rounds of chemo, it has decided to rebel. After my tonsil surgery, my liver function test results were double and triple what they should have been. I’m freaking out. My doctors are freaking out. Of course, my mom is freaking out. My main doctor is so worried about it that she decides to actually talk to Dr. Yuenes down at MDA (Lymphoma Specialist). They decide to push my chemo back an extra week to give my liver a little time to calm down. They think the combination of surgery, post-op meds, chemo-meds, and chemo was just too damn much for my liver.
9. Luckily, they were right and I got my last 2 rounds of GND chemo. The last being on 10-13-10.
10. Today (since I am writing this at 2 am on Thursday morning) is going to consist of me calling MDA to get the ball rolling as soon as possible. I need to get another PET CT scan. If I am cancer free, I will get the HD chemo/SC transplant treatment. That means I will be in Houston for 2 months. Basically all of the Holidays: Thanksgiving, Christmas, and New Years in the hospital. Fan-Freaking-Tastic!


Took me long enough, right?

Warning: Pessimistic Pegah is going to make an appearance for alittle bit.

So, I’m finished with chemo. But I still have no idea where this is going. I might still have a lot of cancer in my system. I still can’t make any plans because I don’t know if I am going to get radiation. And, assuming I am getting it, how much? Nine months of my life have been taken from me and I don’t know how much more will be taken away. What if it comes back? I am going to have to live the rest of my life with cancer hanging over my head. Am I a permanent diabetic from the steroids they gave me? Am I able to have kids? What if there are still large tumors left and I need another surgery? Yet another scar to be self-conscious about? Did I lose my curls? They are gone right now… what am I going to do with straight hair? I, of course, hate my latest hair cut. I feel like I look like a boy with moobs.

I thought I would feel different today… elation, relief, something positive. But my lack of ability to plan ahead is really getting to me. Example: I have a $300 voucher from American Airlines that expires towards the end of May, and I can’t plan anything out. Don’t think that I have to plan every little thing out; think of my plans in pencil (always subject to change). But I can’t even do that because April for me would be needed for radiation if my scans show I need it. Anyone that really knows me understands that trips are therapeutic to me. They are like my rest button; a chance to get away from my current surroundings and just relax.

Maybe I’ll feel better next week when I feel more like my normal self physically. I dunno.

So… Here I am… My last day of chemo. How am I feeling about it? Excited, worried, exhausted, nauseous, and ready to get on with my life. I think the Sarah Bareillas song “Gravity” really sums it up for me: “Set me free, leave me be. I don’t want to fall another moment into your gravity. Here I am and I stand so tall. I’m just the way I’m supposed to be. But you’re on to me and all over me.”

Patrick Swayze, Taylor Swift, Kanye West, and Me.

Taylor: He is a narcissistic Jerk. I am so sorry that your moment was ruined.

Kanye: She is 18 years old. A Child. And you humiliated her in front of MILLIONS of people. I am so happy I didn't watch the VMAs last night because your "performance" would have sickened me. Hell, it sickens me now and I just heard about it. It is called the MTV Video Music Awards, not the Kanye West Video Music Awards. You already have your music to spout your opinions in, but if you need more, You have enough money to make your own awards show and give all the awards to yourself. You arrogant asshole.

RIP Patrick Swayze. You fought hard, but the cancer won in the end. I'll pray for you and your friends and family.
I really hated seeing that you had died because now I am worried. You were only 57... and it seemed like you were winning. Shit... this sucks.

I have chemo tomorrow. Yay! :-(
I am not even half way through my treatment and I am already sick of it. Sick of getting poked with needles, sick of taking medicine, sick of driving to see doctors, sick of my Life being put on hold.

I want my old life back when I could make plans a month in advance without having to worry about how I will be feeling or looking at the calendar and hoping it is an off week from chemo.

An Update... Because it was requested by some

What is it about the hours between 2 am and 8 am that make me want to write? I am having one of my lovely hot flashes, so I can't sleep. Decided that writing an update would be better use of my time than watching my ceiling fan.

So... Update, Update. Hmmm.

Oh... I found a bald spot today. YAY!! Ha, more like I cried alittle. You can prepare all you want, but when you see it your first thought is "Fuck." At least that is the first thought I had. At least I can hide it for a bit longer under my ridiculous collection of headbands.

I wrote too soon after last chemo. It was tough, really knocked me on my ass. I didn't throw up much but I felt so queasy all the time and exhausted.

My next chemo is Tuesday. And if this trend continues, it is going to get worse with every treatment.

My Baylor girls came into town to see me this week. Which was AWESOME. I miss those girls so much. Thanks for driving 4+ hours to see me Jen and Cristin!

I try not to dwell on how unfair this is and how much it has changed my life, but hell I am not perfect. Less than 1% of cancers are Hodgkin's, maybe I should go buy a lottery ticket, eh? I guess I should count my lucky stars that it is Hodgkin's and not something else.

But that positive thought is hard to hold on to when I am sitting in a chair with a needle stuck into my chest pumping poison into my veins. Or when I am so tired I can barely get out of bed to go to the bathroom. Or when I get another hospital bill in the mail. Or when I think of my "plans" for the future. Or when I wake up with my pillow covered with hair.

It is so easy to have myself a huge pity party, with balloons and ice cream cake. A party so good that I won't care that I am the only one there.

But I know that having that party will help no one: not me, not my dad, not my brother, not my doctors, and definitely not my mom. This is hard enough without depression.

In case anyone was wondering, I am typing this as it pops into my head. This is what my thought stream sounds like. Yes, I have the attention span of a 6yearold. Sorry if it is a bit random at times.

Oh, and I know y'all are thinking "get over the hair thing already. it will grow back"... My mind understands that it is temporary but it is also my constant reminder that I have cancer. Because every time I look in the mirror I see less and less. My room is covered with hair. The irony of the situation is that I was finally proud of my hair. Years of battling the frizz had ended and I was starting like that I had long curly hair. Moral of the story, kids? Vanity will always come back to bite you in the ass.

Well, it is now 4am, and though I am not sleepy, I am going to try to get some sleep.

Until my next sleepless night.
Pegah *_*

Something that I need to tell everyone

So... I have racked my brain… Trying to find a good way of saying this. But after thinking and thinking, I decided that just spitting it out on Facebook is the best route, at least for me.

So, here it is: I have cancer. I have Stage IIIb Hodgkin’s Lymphoma. I have completed 3 chemo treatments so far. Yes, I am starting to lose my hair.

My reasons for saying it this way are pretty selfish actually. But hey, everyone gets to be selfish sometimes. I am tired of having to tell my story. I figured this way everyone can read about it and know what is going on without me having to repeat myself 20 times. As I said, Selfish.

I found a lump under my right arm, in my arm pit, on June 6 while I was getting ready to go to a bridal shower. Went to my family doctor June 8th, thinking it was mono or an infected lymph node. My family doctor checked it out and decided that it was best for me to go see a specialist at North Hills hospital, Dr. Wills.

Dr. Wills had multiple tests performed: ultrasound, chest x-ray, and mammography. After seeing the ultrasound and the mammography, the doc thought it was an infected lymph node. Then, she did a fine needle biopsy on the lump. And was very surprised, when instead of finding some sort of fluid, she found a solid mass of tissue. Using the needle, she pulled a small sample of tissue to be sent off to pathology.

The results of the pathology were bad: Highly suspicious for Hodgkin’s Lymphoma. So at this point, I needed to get the enlarged lymph node under my right arm removed and biopsied to confirm diagnosis. However, I do not have any health insurance. The surgery and biopsy alone would have cost $25,000 at North Hills hospital and God only knows how much continued treatment for chemo would have cost. But I am lucky enough to be poor enough to qualify for JPS Connections, which is like health insurance but through the JPS itself.

And so it starts:
July 6th: I had a PET/CT scan.
July 7th: It was a bone marrow biopsy. Which I have to say is one of the most uncomfortable things I have ever experienced. I would never wish it on anyone.
July 8th: Surgery to remove the lymph node in my right arm pit and to put in a port for later chemo treatments.

I spent the following few days recovering from surgery. I was feeling ok until about late Sunday night. My temperate was high, I had no appetite for food, and what little I ate wasn't staying down. So, on Wednesday, July 15th, I was admitted into the hospital for the first time in my life. I stayed in the hospital for 7 nights. Long story short, all of the problems I was having were due to my cancer. While I was in the hospital, I had my first chemo treatment that I totally slept through. Got to love anti-anxiety meds, ha ha ha.

I will continue to get chemo treatments every 2 weeks for the next 6 to 8 month or however long it takes to be completely healthy. I actually had chemo number 3 today, and I am pretty lucky. I don’t get really nauseous. I feel better on the chemo than I did before I started it. So, besides slowly watching my hair fall out, I am good.

I appreciate all prayers, positives thoughts, and get well soon messages I get (or will get) because as good as I am doing right now; I have no idea how I am going to be in a week, 2 weeks, and hell, a day from now.
When you decided to message me with your shock, sympathy, etc., please try to understand that I don’t want my life to completely revolve around the fact that I am a cancer patient. I want to know what is going on in your life, how you have been doing. Because shocking as this is, the world does not orbit around me. Life goes on and it is up to us to keep living it.

God bless and I love you guys.
Pegah *_*


This is the Hogdkin's Lymphoma ribbon. Violet
 This is the ribbon for Lymphoma. Lime green.