Tuesday, June 21, 2011

Chemo #2 and #3- Learning honesty, humility, patience and hope

Honesty, humility, patience and hope. These are some of the things I have learned in the past 6 weeks I have received two chemo treatments.

I have been waiting for the day to write a blog entry when I'm feeling more hopeful, up and energetic and can express my joys despite the current treatment I'm going through. It has taken a while.

In fact, as much as I want to deny it or conceal it from everyone, I've been depressed.  I've been reading lately how chemotherapy can bring about depression. But luckily, I am going through counseling and taking several anti-depressants.

I've been holding off writing a blog because I thought I should be this positive and strong person when I face people reading the blog.  The longer I push myself to be that person, the more I became depressed, because I feel like I'm failing people's expectations to be that strong and fighting person with cancer.

The truth is, I am having a lot to take on.  From physical pain, to anxieties of what the future holds, financial hardship from treatment costs, exhaustion from just doing normal daily activities, loneliness from not being able to socialize as before, frustration from not being able to enjoy the things I used to do and most of all, the fear of death.

Sometimes a simple question I get such as "How are you doing? Hope everything's well" is tough to face.  Should I say,  "I'm fine.  Just in a lot of pain lately and in a deep sadness which I dont know why" ?

But in counseling, my therapist told me its okay to be sad and be weak and it's okay for people to know this.  Its all part of what I am going through and will go through.  Putting on a face thats not me just puts on another burden on top of what I have.

Chemo #2 hit me hard the second day with severe nausea and fatigue. I have taken all the prescribed medicines but nothing seems to work. I felt like there's a metallic layer all over my mouth that everything I taste is like metal. I'm hungry but I cannot eat. I feel like my appetite is also decreasing. I want to get up from bed but my body refuses to. I decided that I will speak with my doctor that this is it, I will stop at chemo #2.

But I wrote about it on facebook. Everyone cheered me up. Everyone gave me hope. Everyone wanted me to fight. A stare at James playing made me want to hit myself for thinking of giving up. Jim and I  are the only people he has to take care of him. What am I thinking?

So I went on day-after-day, waiting for the side-effects to subside. The doctor finally prescribed an anti-nausea patch, Sancuso transdermal patch,  that will give me 7-days of continuous medication to relieve nausea. It gave me hope at first but when we found out that the cost is $309 per patch, that will be a total of $927 for three weeks until my next chemo. Jim just got back to work and we are a little struggling with the finances with all the expenses of my treatments.

We were able to buy one patch, and luckily, the doctor gave us a one-time discount coupon for $200 so we only had to pay $109. I cherished every day that the patch gave me the relief.

I got through three weeks from chemo #2 and was feeling great and energetic the day before chemo #3. I almost dreaded another monday of going back for another infusion.

I had chemo #3 on June 6, 2011. This time, I followed my doctor's instruction to put lidocaine numbing cream on my port and take Percocet pain medication an hour before they will stick the needles in. It worked! I didn't feel the needle at all. But this time, after the 6-hour infusion, my fatigue and stomach pain was worse than it has ever been. I don't want to get up from bed, i feel like my stomach and intestines are getting pulled out of my gut. I'm refusing to eat or drink anything (aside from 7-11's slurpee). This time, I'm decided, I don't want to go through the rest of it anymore.

And then came all the supportive messages again from friends, cheering me on. Telling me how I am inspiring them. A part of me want to tell them, "no, I'm weaker than what you think I am, I am about to quit it". But my heart just cant. How can let all these people believing in me down?

The battle in my mind of wanting to give up and staying positive makes me sometimes want to throw myself on the wall. Most of the time I feel so confused. I know its part of a cancer patient's life to be depressed and anxious and confused. This is real and I can feel it everyday. All I want is for everything to stop and go back to normal. I want my old normal life again.

All I want is:
-to taste the sour vinegar
-chew food and savor its flavor
-be able to get up and do everyday household chores
-be able to walk James to the park
-play with James at home all day if he likes to
-go out to do errands, go grocery-shopping, etc
-visit friends and spend some time just chatting over coffee
-drink and taste anything my mouth desires.
-a simple trip to see the oceanside or a quiet park
-bring James to museums and parks
-wake up without feeling sick

These are the things I never appreciated before. The littlest things that seem to matter now. Humility. The simplest things matter most when you aren't given the chance to do it. I used to wish for grandier things. A house, better car, a great travel vacation, a great job, bring James to disneyland, a grand wedding, visits to the Philippines, and a whole lot of other bigger things. Now I just want to feel better today.

These two treatments have also taught me patience. No matter what my mind does, I cannot force time and space to move forward to another day with the hope that it will be better tomorrow. I have to wait. I have to go through the whole 24 hours and wait if it will feel better tomorrow. And if it doesn't, I will wait another day. This experience has made me look forward to night times, when everything is quiet and I have to go to sleep. Not feel anything and not be in pain. When my mind momentarily forgets the slow but painful effects of the treatments. Patience. I go from one day to another day. And eventually those days turn into a week and then another week. And then the whole three weeks have passed. I survived another infusion.

Hope. There is really hope in the midst of challenges. Just when I thought I will just have to endure the rest of the two weeks without the expensive patch, just because we cannot afford it for three weeks, I found a website that will help in paying for the patches if I qualified. ProstraCare, Patient Assistance Program.  I tried, applied and God is GOOD! I was approved for 4 patches a month at no cost for six months. God never ceases to let go of me. He knows when I need his help most. They just sent the first shipment and everything will be taken cared of from hereon.  The patient representative who helped me was Filipina, her name is Glory, based in Illinois and she was so sympathetic.  I felt her love and concern even just over the phone.  (I had to send her James and my picture with a thank you note for helping us through the process).

A patient's challenge doesn't end in trying to feel better everyday and getting through the rough effects of treatments.  It gets complicated by the insurance company trying to refuse to pay for the treatments from diagnosis to surgery to chemo.  The bills keep coming summing up to almost $180,000.  It is the last thing one needs at this time, to be more stressed.Studies have indicated that stress can affect tumor growth and spread, but the precise biological mechanisms underlying these effects are not well understood. Scientists have suggested that the effects of stress on the immune system may in turn affect the growth of some tumors. (Psychological Stress and Cancer)

Challenges may continue in this journey but I'll try my best to continue holding on....and continue learning.

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