Random Thoughts

Can't believe I have 1 more week of recovery at home before my next chemo! So far, the recovery has been a smooth sailing.  The wounds around my neck are closed off. Got some scabs but at least it is not burning or the need to constantly apply all sorts of cream over it.  I can finally take shower and wash the 2/3 of hair that is remaining on my head somewhat normally.  I will need my GI Tube to be out before I can really say I got my body back.  As for my face, all those tiny burnt dots are peeling off.  Maybe thanks to SK-II Essence, La Mer Creme, La Mer Concentrate...  My face didn't get any wounds like my neck.  Perhaps, the skin on the face is thicker than the neck and that is why the side effects didn't creep on it as much.  My throat is slowly recovering.  I managed to eat via the mouth 1/2 a bowl of water down congee once per day.  I thought by now I can at least eat 1 meal per day but no....  I'm quite far away from doing that.  Maybe I'll surprise myself by the end of this week?  We'll see.  My next chemo treatment will be slightly different than the past 3 treatments I received. I'll be getting a new drug added to the mix and instead of one day treatment, this time it will be 5 days long.  I'm resting as much as possible to gear up for next week's battle.  I don't know how much toll it will take on me... hopefully it won't be too much.  Will try to stay strong and firm!

Anything that is normal to anyone, it is not for me.  I haven't been out and in the past few months, yeah.. I have been going through quite a lot.  Just the other day, when the sun finally went down, I finally had a bit of courage to go outside for a quick 1 minute walk.  I was very nervous but my aunt who stayed with me said I'll go with you. Don't worry.  I had my hat on, my jacket on covering my neck, etc..  At first, I had a feeling of success like "wow! I did it!! I'm outside" but shortly after, I told my aunt, I'm ready to go back in....  Even trying to eat, I feel like a baby.  Like as if I just got introduced to solids.  Everything is watered down, got not flavour and I need to take a small spoon at a time.  My stomach hasn't had any solids for over 4 weeks. I can't shock my body and neither can I rush anything down my throat when all the mucus walls are ripped apart.  Every day, I ask myself, what am I ready to try today? How much can I push myself?  Even when I am not up for it but I know my throat is feeling better than the day before, I must try to eat something small to get all the muscles start working again.    Through this cancer war experience, I realized that the fight is not so much about the cancer. It is about fighting all the side effects, and a total mind/body game.  The treatments take care of the cancer but the rest, it is all about me and how I will manage it.  Here's an equation that I came up with on how and what it takes to achieve the highest success rate to fight the cancer:

100% (Cancer is Dead) = 25% (Treatments/Doctors) + 25% (Help/Prayers) + 50% (SELF)

50% is SELF!!!!  You can get all the top drugs, help and prayers but if I don't put in 100% of my own effort to make sure I hit my own 50% of the equation, I reduce my chance for success.  There's nothing worst than to give up.  What does give up looks like?  When you are in so much pain, you know you have to eat but you don't do it.  When you are suppose to sleep, but you run around and do stuff vs. asking for help.  So, letting go everything that you used to do is a MUST, if you can.  When doctor and nurse tell you how to manage all the side effects, you don't follow and comply, then you are not trying to achieve the 50% of the success equation.  When you are stressed, sad, etc.. and cannot find a way to think positive, this is giving up.  Everyone can try to help, tell you all sorts of thing, sending you all the positive and encouraging words etc..  but it doesn't work if you don't find a way to help yourself.  You can go to all the treatments, but it is not enough.  Everything is easier said than done.  I had multiple occasions where I'm about to breakdown but thanks to all the prayers and all the people (family & friends) care, I managed to sustain to this date.  Every time I was about to have a melt down, somehow I get a positive message in my inbox to remind me to stay strong.  Right away, I tell myself that these people took the time to send these message to me, I need to find a way to fight this pain I'm dealing with.  In everything I have done so far in life, I have always tried to contribute 150% of my effort.  So, this won't be an exception either!


My doctors and nurses are really good.  They tell me all sorts of tricks and tips on how to manage my all the different side effects.  However, following their advice takes a lot of effort, dedication, and often they tell me that a lot of their patients who are not compliant, they pay the price for it.

Here's what my approx. routine looks like on a daily basis:

• 11pm/12am - Sleep 
• 3:30am/5:30am - Wake-up, rinse mouth with baking soda, pump 1 bottle of ensure, pump 1 cup of water, take pain meds, apply cream on wounds, nasal rinse
• 6:30/7:30am - go back to sleep
• 10/11am - Wake-up, rinse mouth w/ baking soda, 1st round of eye drops to prevent dry eyes, saline soak entire neck for 5 min, apply cream on wounds and face, pump 1-2 bottle of ensure, pump 1-2 cups of water, do the mucositis mouthwash, take pain meds, walk around the house to exercise (all this will take 2-3 hours), nasal rinse
• 1/2pm - pump 3rd bottle of ensure if didn't do it in the morning, take pain meds, do saline sock, apply cream on wounds, rinse mouth w/ baking soda (literally every 30 min anytime I'm awake), 2nd round of eye drops to prevent dry eyes, nasal rinse
• 3pm - go for a nap
• 5pm/6pm - wake-up, rinse mouth w/ baking soda, do the mucositis mouthwash, pump chinese herbal meds, pump 1-2 cups of water, do last round of saline soak around neck, apply cream on wounds, walk around the house to exercise, nasal rinse
• 8pm - pump last bottle of ensure if ready otherwise wait until 9pm or 10pm, apply cream on wounds, brush teeth and do the 5 min. fluoride trays, eye drops in eyes, walk around to exercise the body, nasal rinse
• 10pm/11pm - rinse mouth with baking soda, take pain meds, apply cream on wounds and get ready for bed, meditate for 5-10 min, nasal rinse

If time permits and I got the energy, I would use it to go on facebook, check emails, and watch a little TV.  But if I don't have the energy, most of the time after I finished pumping the Ensure into my stomach, I would just hibernate and sit on a couch with my eyes closed.  Rinsing my mouth with baking soda is recommended by the docs to help prevent and heal any sores that can develop due to treatments.  Knock on wood, so far so good. Because I rinse literally every 30 min or more often than this, I have managed to have literally none to this date.  As for using the saline soak helps to clean and help the wounds healed.  It also helps to manage the crazy heat that I feel on my face and neck after radiation. I can't use ice packs because it will make everything worst.  I cannot use any soap/body wash to wash the area because it would irritate it even more.  So saline soak is the only cleansing therapy that I can use until my wounds are healed.  The only exercise that I can do without burning too much calories is walking.  I need to walk so that it helps to improve circulations.  I must make sure I keep talking a little bit every day even during the most painful soar throat of all times to make sure my vocals are not deteriorating and keep the muscles working.  And last but not the least, the mucositis mouth wash helps numb the mouth and throat.  It also helps to prevent fungus growth in the back of my throat due to lack of saliva and radiation treatments.  The numbing part last for about 20 min therefore helps ease some of the pain.  Somewhat nasty to rinse with because it is thick and makes me want to gag.  I've been a 100% compliant patient and have done exactly what the docs recommended.  I think that is why the Doc and nurses are all tell me how well I'm doing.  But honestly, even through I was 100% compliant, and receiving encouraging words from medical experts, I still felt like CRAP often when the pain was intolerable.  However, I know that if I didn't do what I did, I would be in a much worst situation and would get hit with stronger side effects.

The last thought on my mind this past week or month but not the least.... is my Charlotte.  She came into my mind more often this month because it was suppose to be a happy and special month for all of us.  If we didn't lose her back in January, my due date with her is May 20/21st.  Or perhaps, last week or the week prior.  I asked my husband how he is feeling, he also told me that this came thru his mind several times this month as well. It is not as simple as saying that we feel like we've moved on.  It will always be in the back of our minds.  We see things that reminds us of her. So far, I think I've moved on a lot faster than I thought I would be by now. Maybe because I'm being distracted with this cancer fight. But I know I've let things go. I know I am not depressed about it because I believe that my daughter has saved my life and she is the most courage/strong baby I've ever known.   I see other pregnant people around me and I don't feel sad. In fact, I get so happy and excited for them.  Also, when I see people having newborns, I also feel so happy that a new life came on this earth!  I just can't wait to get back to normal and have my life back in order and hopefully, a few years down the road, god will bless us with another baby, a sibling for Jake :)

This past weekend was a great one!  My cousin came over for a short period of time with their little one and Jacob had an awesome time at the park with his cousin close to his age!  Another cousin also dropped by with food, flowers, and we had a great chat.  A chat that I didn't think I can do but wanted to do for so damn long at the same time! I still felt like I haven't seen any human beings since I've on-boarded onto this journey!  Only this weekend that I've gotten closer to my son!  I had him on my lap and we did some hand painting.  It is unfortunate that in a few more days that I will need to distant myself from my baby again and get ready for the treatment.  It will be another 2 weeks probably before I can get this close to my little one.  Just need to do what I need to stay healthy and strong.  Not a time to catch anything and bring my immune system down more than what the treatment is suppose to do.  I'm also very happy that I started my next piece of artwork....  Gonna try to see if I can finish it in the next 2 days.  For now, here's the small piece of art that Jake and I did today. Jacob is growing up fast! Just realized that from seeing how big his hand is!!!  Or maybe I lost weight, and my own hand got smaller?  Whatever it is, I'm very proud of this small creative artwork that I did with my son! :) Happy end of a long weekend!