Saturday, May 14, 2011

I Had A Dream

I had a dream last night. I was being chased by boys, some cute and some aren't! I didn't like them so what I did was take off my wig and they all went running away. But when I thought I got rid of them, there's this one guy, he was handsome and a gentleman. He didn't chase me but just approached me. But I still took off my wig (i don't know why) maybe I thought he will just go away anyway if he finds out I'm bald. But he stayed and embraced me. It was a nice dream.

When I woke up I clearly remembered my dream which is unusual because i always tend to forget my dreams. I thought about it and realized it was triggered by my conversation with Jim last night. I normally wear nothing on my head at home except when I'm too cold, I would put on my hoodie. Jim asked me if I want to shave my head already while staring at my very thin-haired head.

I said, I'm not yet sure. I don't know if I'm ready to be really totally bald. I used to say I'm going shave it off when it starts thinning out or even when it just starts to fall off. But now I'm scared to shave, i think. I asked him, "do you think i should shave it?" He paused a bit, and he said, "well....."

And then he said "I'm just thinking you might get depressed everytime you see your thinning hair". I said it's ok because I don't look at the mirror that much anymore anyway.

And then I asked him to touch my head. He hesitated a little and gave me a slight scared look. I took his hand and put it on my head. I said, "isn't it so soft?" and smiled. He said "uhmm yeah," still with the "scared and unsure" look and quickly pulled his hand away.

Maybe at the back of my mind, I took that conversation to my sleep and dreamt of something that people are afraid of my balding head. And that it makes them want to go away. And somehow someone whom i love has the same feeling. I felt a little bad about it and made me feel self-conscious and undesired.

So I shared my dream with Jim's mom in the morning. I told her the dream and the conversation I had with Jim last night. She had a different thought about it. She said maybe Jim feels bad about it for me too. Like its tough for him seeing me bald coz it makes it more real that I'm sick. Which at first, it was how i felt bad about my hair falling out, it makes it more real that I have cancer.

She also said maybe Jim feels bad about me being sick. Like the time I felt I wish I was sick instead of baby James when he was at the hospital because of his kidney condition. I always prayed that God give me any disease instead of baby James.

I felt a little better after my conversation with mother-in-law. It must be tough for Jim to see my balding head all the time and he has no choice but to see it. At least I have a choice not to see it, I just have to avoid looking at the mirror or touching my head.

It must be tough for my family. I wish I can shield them from it.

So I wrote our couple's counselor this morning. She has been helping us go through challenges that couples encounter especially during the first year of having a child. And now she still sees us through as we go through another challenging phase in our lives as a family.

I want to share what she has to say, which made me feel better and cry a little:
"Aren't dreams interesting? They definitely help you sort through and pay attention to feelings. The baldness is an adjustment for you and everyone. As you know, even someone just changing their hairstyle and color can be shocking and take awhile to get used to. I know you are in the process of making peace with your hair loss and seeing it as temporary. In my experience, people will get used to it and react off of you. I have seen people fighting cancer wear their baldness with pride and a smile, knowing it is a sign that they are doing their best to live a long life. Yes, it might scare people (including Jim) at first and be a reminder of how fragile life might be. People can be very uncomfortable talking about any kind of illness or knowing what to say- they can follow your lead when you talk openly or remain quiet, depending on how you feel. Most people know someone who has dealt with cancer and just like when you are pregnant, often feel like sharing their own stories. Of course Jim feels terrible that you are ill- he loves you and it can be a helpless feeling for a partner. In time, I think you will find that your friends and family will relax with it and focus on you and not your scalp. Honestly, you don't need to worry about shielding people from this. It is simply a reality of life. Be your beautiful, loving self Krissy and that is what will be noticed :)"

Its true, change is difficult at first. But in time, it will get easier. Its also true how most women are afraid to even change hairstyles, or even change hairstylist. Our hair may be our crowning glory but beneath and beyond it is more important.

I'm going to embrace it from now on.

________Side Note________________
Thursday was a happy day to be bald! I went to American Cancer Society's Helens Room which gave me the biggest smile that day when they asked me to come in for my wig appointment. Not only was it free, but whatever hats, caps and scarves i touched and liked, they gave it to me! More generous people should multiply on earth. They truly made me happy being bald today.

If you can , please help in raising funds for Krissy's Breast Cancer treatment:

Monday, May 9, 2011

The Day It Starts To Fall Off

It's different when everyone at the doctor's office tells you your hair will fall off eventually. I see it in the chemo room sometimes, some patients don't wear wigs and just put a cap on that you see their bare scalp. Its easier knowing it.

But when it actually happens, no matter how much I read on it, see it or hear about it, it seems tougher to muster up the feelings that comes with the reality. My hair started to fall off tonight.

It started with an itchy scalp at the back of my head. Scratched it of course and there goes a bunch of hair strands between my fingers. I did it again and it still continues.

I have to cry a bit to express the sadness of reality. Jim is tougher than me so I just leaned over to him and put his arms around me and more tears trickled down.

This is the start of it. I know they say it will grow back and I can wear a wig. For me, It's a physical manifestation of the cancer for me that I cannot deny when I look in the mirror.

Sometimes when my energy is up I tend to forget I have the big C. And go on with the day until I feel fatigued. But looking at a balding head is an instant sign that I have it.

As my friend Abi just texted me, it will grow back and it will just be part of getting the treatments to get better.

I guess so. For now, I'll be adjusting with the fact for a little while. Maybe cry for just a while... like my great friend Mike Cortez sent me in a video... " Coz deep inside this armor, the warrior is a child"

If you can , please help in raising funds for Krissy's Breast Cancer treatment:

Tuesday, May 3, 2011

Chemo Round 1 - Taxotere-Cytoxan + Neulasta

That week in preview:
April 23, Saturday- Surgery to harvest my remaining healthy eggs
April 25, Monday- First chemotherapy appointment
April 26, Tuesday - Surgery to implant port for chemotherapy

Its been a week since I got my first chemotherapy infusion.  At the back of my mind, maybe I didn't want to have my first chemo yet because I "thought" the appointment that Monday, April 25, was just to tour me around the infusion room, give me all the "tips" and educate me about my first chemo.  I was still sore from the ovary surgery two days before.  When I got in the UCLA central infusion center,  the nurse told me to pick my recliner and get comfortable.  I asked "Uhhmm, am I getting chemo now?"  She said, "Uhmm , yes.."

I was supposed to take two steroid pills a day before and a day after chemo.  I wasn't able to take it the day before because I "thought" it was just a sneak-peak tour.  But nurse Nancy said its ok this time, she will just give it to me intravenously and double the dosage. 

So I picked a recliner near the window and *tried* to get comfortable.  I was obviously scared because its something I've never experienced.  I watched her bring over an armful of bags of infusion intravenous bags.  She sat down next me and started chatting away what all these IV bags are for, while she tied my arm, rubbed my veins and made it as "angry" and visible as possible.  As usual, Jim was next to me showing James' cute videos from his iPhone to distract me from the needles entering my veins.

She took 4 vials of blood for testing and started then started four pre-chemo meds through my veins: Aloxi an anti-nausea; Decadrone a potent steroid for nausea and vomiting; Benadryl for any allergic reactions; Pepcid for heartburn.

While she waited an hour and a half for the pre-chemo medications to finish dripping, she explained the kind of chemotherapy I will be getting, side-effects, how to care and where the free snacks and drinks are located in the infusion room.  (the last part was all I paid attention to)

I am getting two kinds of chemotherapy drugs, Taxotere (Docetaxel) and Cytoxan (Cyclophosphamide). One infusion every three weeks and 6 cycles which approximately will last six months.  A day after each cycle (infusion), I need to come back to the hospital to get a shot of Neulasta, which will make my body produce white blood cells (WBC) to fight infection.  Chemotherapy is known to decrease your body's ability to fight infection by decreasing these WBCs. The Neulasta shot is known to cause bone pains as side effect.

Each infusion lasts 5 and a half hours. The day of first chemo, I was feeling ok.  The toughest part was when the needles taken out.

A day after, I had surgery to implant the port for chemotherapy so the nurses wouldn't have to prick my veins each time.  It was a short and outpatient surgery, but I didnt realize it will be painful after.  My chest was sore and my left side of the neck where they inserted the tube to the jugular vein was also painful when I move my head. but I just kept taking my pain medications for a week now.

Chemo side effects are experienced by more than 30% of patients with an
Onset:  for 4 to 7 days
Nadir: for 5 to 9 days (Nadir is the low point between chemo treatments when I am most susceptible to infections and lowest blood counts.)
Recovery : in 21 days (on the 22nd day, you will get the next infusion, Yay to recovery!) ;)

I did not experience a lot of the known side effects for the first two days, except I have felt the following on days 3 to 7 after Chemo and Neulasta shot:
- head sweating (I mean, extreme.  Its really dripping on my neck while my body is chilly and cold)
- Nausea
- Loss of appetite - everything tasted like medicine and tarty or bitter)
- Weakness and sudden extreme tiredness
- Constipation
-Bone pain (this one I hate most!  It feels like when you hit your shin on a corner.  My bones from head to toe feel these sudden shooting pain for days)

From days 5 to 8:
- less of the bone pain but more flu-like symptoms
- painful stomach cramps and diarrhea
-painful gums, dry tongue and mouth
- sensitive scalp
-painful fingernails
-extreme changes in body temperature
-continued fatigue and weakness
- bladder problem (uncontrollable)
-right hand tingling
-unexplained nightmares

Other side effects that they told me to watch out for in the next week or two are:
- Hair loss
- Discoloration of skin and nails or possibly loss of nails
- Loss of fertility
- Low blood counts

Fortunately, with developments in cancer management, these side-effects can be managed or at least tolerated by most patients. Some of the solutions are pills, wig, IVF treatment.  I dont know what to do yet with loss of nails. 

I'm taking about 12 pills three times a day to combat nausea, vomiting, diarrhea, constipation, allergies, swelling, depression, anxiety, pain and bone pain.  (I stare at these pills in my hand for 30 mins hoping they will taste like m&m's). When I can, I also try to walk for 5 minutes in front of our house about 4 times a day to keep my body moving and not experience severe weakness and joint stiffness.

I have a prescription for cranial prosthesis, a.k.a. Wig, which fortunately with the help of American Cancer Society and Helen's Room foundation, I can get a wig for free on May 14 when I get a fitting appointment.  The medications, co-payments, and other cancer-related expenses have been too costly for a family who only have one breadwinner and the wig may be an expense I can just forego . 

Speaking of help, the L I V E S T R O N G foundation of Lance Armstrong has been a huge help with our fertility treatment.  They shouldered almost $12,000 of the $15,000 cost to preserve my egg and fertilize it until I am done with my cancer treatment.  My fertility oncologist was able to harvest 16 eggs.  We were on pins and needles whenever we get a call update from them.  At  first, 8 eggs were matured enough to fertilize, then 6 were starting to fertilize.  On Thursday, only one was successfully fertilize but on Friday, 3 more eggs came back and successfully fertilized for freezing.  So now we have a total of possible 4 eggs fertilized for in vitro fertilization in the future.  Although I am still praying that we will be blessed with another child, I am still aware of the fact that not all IVF treatments are successful.  I am hoping and praying for a little Krissy in the future. We still need to pay the cost of freezing every year, but we will cross the bridge one year at a time.

As I was watching Regis and Kelly the other day, Eva La Rue was talking about an organization called Beckstrand Cancer Foundation which helps families that are devastated by the cost of treatments, which we are already feeling.  Because our insurance company is starting to give us a hard time with claims and paying for my treatments which are running up to almost $200,000 now, I hope I can get through them to help us in navigating through the difficult ins-and-outs of cancer treatment and insurance.  The last thing a cancer patient needs to handle is fighting the insurance to get treatments to be able to live.

I still believe no burden will be given to us if we cannot carry it.  And as I look back, when Jcube was in the hospital for treatment for his multicystic dysplastic kidney, I kept praying to God to PLEASE just GIVE ME whatever health problem there is as long as my child lives healthy from hereon.  Jcube was seen by his urologist today at Children's Hospital Los Angeles and the Doctor said his ultrasound is okay.  He is generally healthy right now and will be back for his regular kidney check up in 4 months.  I'm glad my prayers for a healthy child were answered, no matter what I am feeling physically at the moment.

If you can , please help in raising funds for Krissy's Breast Cancer treatment: