Chemo #4 was tough. From the morning, I had to take the bus because Jim, my better half, had to take our son James to Children's Hospital. James was born with multicystic dysplastic left kidney (his left kidney is a composed of dozens of cysts looking like a kidney but it does not function), we have to take him regularly to his nephrologist and urologist at Childrens. I had to leave at 7 am to make it to my 10:00 am appointment. I was leery of taking the bus because my immune system is not as strong as it used to be and being in a enclosed public transportation, I can catch germs easily. A seemingly-homeless man was sitting next to me the whole time and even with my face mask on, I could smell something unsanitary. But I made it. I got to the hospital safe.
Usually, three to four days after Chemo, I would start to be able to taste at least strong tasting food. The first few days are really tough and I expect it. Soil-like texture of food, bitter-tasting drinks, weakness and tiredness. But this time around it was taking longer than usual.
On the sixth day, I was still weak, and cannot eat or drink anything. I called my doctor to ask if I can do anything. He told me to come in the following week (it was a saturday when I called) so they can check me out.
On the seventh day, I cannot handle the feeling of being weak anymore. I almost slept all day, I couldn't help take care of James and just couldn't walk without feeling like I will fall anytime. My hip bones down to my feet were all painful and weak. So I emailed my oncology nurse practitioner: I would like to stop at chemo #4. And I dont think I can do radiation either.
I have a scheduled initial appointment with my radiation oncologist that Thursday, July 7 and I was planning to cancel it too.
That Monday, the chemo infusion center called me early in the morning to ask if I can come in for hydration. I agreed and went to the hospital. They checked my vitals and weight and took blood tests. I lost 8 pounds in 1 week. I was also dehydrated and my heart rate was fast (135 per minute). They gave me two hours of hydration via chemo port.
After two days, I started to feel better. I started to taste the food and drinks. Although my usual drink, Gatorade, was still bitter, I found an alternative. I loved the taste of Naked Mango smoothie. It was the only drink I can tolerate for now. I even had a date night with Jim and ate a salad. Wow! I got so excited because it means this is a start of feeling better again before I go for the next infusion.
So far, this is the worst side-effects I have experienced. But even though it took longer that it used to be, I started to have hope that there will be an end to every suffering. I am so grateful for Jim and my mom. My mom took care of James the whole day while taking care of my dad too, and tried to make me eat by cooking what supposed to be really are yummy Filipino dishes. And Jim, even though he was very tired after work, he would take James out and entertain him or keep him busy to give me more time to rest.
Its amazing that a lot of people care for me so much that they go out of their way to help me recover.
Its even more amazing that there are a lot of people all over the world who care and love me. We started a fundraising to help us with the medical bills which has been summing up to $228,000 and still adding up. (chemotherapy and radiation are not yet billed). It will also be funding the possible litigation against the insurance company if we cannot resolve it by arbitration or other means.
Right now, we are awaiting for an approval or denial of my radiation treatment. We will decide what to do or where to go for my radiation treatment depending on what the insurance says.
We want to thank all of our friends and families who have helped us in the fundraising. It was very humbling but I know all your love comes with it. Some have donated very generously, some donated even though they dont have that much and it is a form of sacrifice, some helped by posting it in their Facebook walls, blogs and websites. Some sent a handwritten card with their donation (which I got so excited about because I seldom receive a card in the postal mail anymore). Some sent more prayers and well wishes for recovery. One friend suggested to make t-shirts which I hope will be successful. These are people whom I have known for decades, have just met these past years, and some don't even know me.
One very special friend,
Mike Cortez, is publishing THREE coffee table books to raise funds. He made a preview of the book in a video below. You can email him at
senseimiyaki@gmail.com.
All these love all over the world, all the support I have been receiving made me think twice... why would I quit my treatment? No. I will finish the battle. It may be tough, but I can get through it again.
