Dr's appointment

Today was treatment day. Sometimes when I go to Clinic E there's no one there but me and a couple of stragglers... today, there was a steady flow of people coming and going. They must've moved the kid's clinic coz there haven't been as many kids during this time as it has been in the past. I wonder where they moved the kids to or what day they have clinic now. Even though the place looks festive with all the garlands and Cardinal Bernadine's tree enclosed in glass by Clinic A, it made me realize the cancer does not take a holiday. We were there to be checked by the doctor so we can get our treatments.. shots or IVs. Some were making plans for their Christmas celebrations but others were talking about radiation and chemotherapy and medications. Sometimes I wonder what it would be like to have a day or two where no one gets sick and there are no treatments and no medications and no clinic Es...


After that, I had to hurry to get to my eye doctor's appointment. Contacts are doing well and looking well. It has been hard trying to figure out which lenses would work for me. This fluroperm seems to do the trick so far. Dr. Russo suggested that I order n extra pair to take on the mission trip. I didn't know how my eyes would adjust to the contacts so I ordered an extra pair of glasses instead. The lenses do feel better compared to the other ones but it still moves out of position when I blink. At least it doesn't go to the very corners anymore like the other ones and if it does, I have a rubber suction to take it out. A pretty nifty device. He said the eyelashes at the bottom lid were really poking my corneas and he's afraid that it would infect my eye. So, even though I did not want to and he put like 4 drops of anesthesia in both eyes, he plucked my bottom eyelashes. I really wanted to screen!!! and I wanted him to stop. But, he is concerned about scratches in my cornea. Such a horrible thing to go through. Not as bad as being awake during eye surgery but bad enough. I told him I will ask Dr. Yoo to surgically remove the inner layer of my bottom eyelashes, that way I don't have to go through this again. i was so afraid he would poke my eye with the tweezers but he was very gentle and reassuring the whole time. Me? I whimpered and cried because it hurt so bad even with the numbing agent in my eye. He also did it with my contacts on... and this time, he removed about 12 on the left and about a couple on the right.  I'm glad that's over with. Tonight, when Mahal put the ointment in my left eye, he said that it looks cleaner and it was easier to put the ointment because there was no barrier to keep it out. 


I saw my patient today. I walked in their house and they had their tree all set up with very nice decorations. The baby & I sat on the floor under the tree. It was nice coz they had the lights on. I told the Mom & GM that I like sitting there working with the tree lighted up. I haven't had the energy the last 3 years to put up a tree or decorate for the holidays so it was nice to just be able to sit there and enjoy the tranquility it brings. 


after that, I came home and rested... and did some work at the end of the day... i'm very sleepy now and if I have alot of typos, please excuse me. I'm very sleepy and I can't see a thing because of the ointment in my eye. till next time :-)  UPDATE: respiratory bacterial infection is almost completely done and my voice is back. I've taken antibiotics for 5 days now.. pretty potent stuff. The gastroenteritis is still there in terms of stomach cramping and nausea. Today after treatment, the nausea was pretty yukky. Thankfully I found some ginger candy that a friend recommended from Trader Joes. At least it gave a distraction because the candy is very spicy.


I'm very sleepy & I'm falling asleep trying to type.. so if there are alot of mistakes, please excuse me.  take care :-)

no voice

So I went to the doctor today, since I've progressively gotten more congested since Wed. It's not strep but some other kind of bacterial infection. I'm on antibiotics for the next 5 days and mucinex to help with the coughing. I've kinda lost my voice and have to talk in 'falcetto' voice since my voice is cracking every time I talk. I've been really tired and cold and generally don't feel too well. I went to the cancer center to get a new sleeve. I like wearing the sleeve because it really does make my arm feel better. I'm so glad they're there and I thank God that Frendell's got very good insurance coverage and they allow me a couple of sleeves a year if I need it. Since lymphedema is constant for me, this is actually my second sleeve this year. 


So, I'm supposed to be on a bland diet since I continue to have stomach pains. So I made some sotanghon soup. I had made rice soup yesterday with lots of ginger and that's kinda all I've been eating. The sotanghon soup turned out quite well considering I really didn't know how to make it. I think it would have been much better with chicken broth. But I prefer vegetarian and it was still very tasty.  I was told to just rest and take it easy until I feel better.  I hope this won't get worse. I really didn't want to get sick before our trip... we're having a snow storm this coming week-end too. If I felt better, i would have tried to make some vegan cookies to eat with tea or hot cocoa. Oh well.... 


have a great week-end and hopefully next time I log on, my voice will be back :-) 

Oculoplastics

Today after breakfast I was besieged by severe stomach cramps and feelings of nausea.  I was breaking out in sweat and I could not finish drying my hair as I got ready to see Dr. Yoo, my oculoplastics doctor. I had to cancel two appointments, one for evaluation and the other for treatment. I finally made it to the doctor and thankfully did not have to wait too long to be seen. But the news is not good. Dr. Yoo did give me the okay to go on the mission trip, but as soon as we get back, i have to see him again and then we will schedule for another surgery to lower the left corner of my left eye. He said that it is not retracting as much as I think it is, but it is retracting and we need to do something to protect the cornea. He would also do a biopsy of the eye muscle tissue so I will have no doubts that it is indeed Graves disease. He said that the antibodies do make changes in the muscles of the eyes and this is one way they determine for sure that one has Graves disease, after all the blood work and other symptoms. This is his response to my question, "do you think that it may be something else? that I may have another kind of eye disease?" He said, "No. But the reason your eye is still getting worse is that you still have your thyroid. As long as the thyroid is there, it will still produce antibodies, even though your thyroid levels are more normal now". So, there you have it. Another surgery next year... but he said this time, it won't be as extensive or as long.


After that appointment, I then went to the lab to get some blood work done. A couple of hours later, Dr. Mahzari called me and told me that my white cell count is somewhat higher and she thinks that I may have 'gastroenteritis". My liver function is marginal as well, but she doesn't think that it is related to the problem I was having. Anyways, she wants me to call Dr. F, so I did and I was recommended to stay home and keep hydrated with clear liquids. If I'm still not feeling well in the morning, they want me to stay home. They don't think I'm contagious but since I work with babies, I must take precautions. I hope I feel better soon. I've just been resting all afternoon and I still feel tired :-(

Elizabeth Edwards

I heard yesterday that Elizabeth Edwards had lost her battle with cancer. Although I am not personally acquainted with her, it was her book RESILIENCE that I read when i first started treatments last year. It seemed like I was at the cancer center every week, for blood work, doctor's appointments, etc and I brought that book along and read while I was waiting. She showed so much strength, dignity and courage as she faced so many different devastating events in her life. One thing she wrote has stuck with me: "Cancer has changed you and changed you forever. You will never be the same person again... but change does not necessarily mean it's bad.. change is just change".  I underlined those lines, memorized them and then believed them. During the darkest moments I faced, when I wished all the pain will just be done already, I remembered those lines and said them out loud and re-assured myself that I am changed, but the change may actually be better. And now, 18 months after I started the treatments and 2 years post-diagnosis, I know I have changed for the better. I am more focused and the focus is on what's really important in life: God, family and my purpose. Everything else fall's under that, right?  I am sad today because I know that Elizabeth's children and her family are grieving and will be missing her. She lived such a public life and has shown grace through it all. I admire her courage and her purpose to live her life for her children.  I'm glad that she wrote her book.. she has shown that we as human beings are RESILIENT and we can and do make a difference, even if it's just for one other person. I'm glad she fought and fought valiantly and I'm so grateful she shared her story with us... I will be forever thankful that she embraced the changes that breast cancer has brought in her life; in doing so, it had given me the courage I needed  to embrace the changes that happened to me. Good-bye, Elizabeth and thank you for sharing yourself with others...

Eye doctor

So I saw the eye doctor again yesterday. I am now on my 3rd pair of contact lenses since June. The first was soft, toric lenses. The 2nd was gas permeable and this last one is too, but it's a different kind of plastic. I forgot what its called. But it has the ability to get high 'grade' and still be thinner than the other lenses. It feels better this time around although it still catches on my eye lids every time I blink. So it always has to reposition. I'm also scared that it will just 'pop' out of my eyes, especially since my eyes are drier these days. The left lid is retracting again,; people can tell now even when I'm wearing my glasses. So I will try these lenses for the next 2 weeks and see how they will feel. The doctor is pretty cool though, he said that I can return the 2nd lenses so I don't have to pay for these ones. That's pretty good, otherwise I would've spent so much money just for contacts.  I had to order another pair of glasses to take to the Philippines. I got plastic lenses this time around. I don't know  if it will fit too well though, since my nose bridge is flat :-(  :-)  Anyways, i wanted an extra pair just in case something happened to these glasses; I wouldn't be able to see without them. 


Life has been moving along. The endocrinologist has again lowered my thyroid meds dosage. The last blood test is showing normal levels. We are closely monitoring for symptoms and also the white cell count. I told her that the symptom most prominent is my eye is getting bigger again. I'm getting really frustrated with this whole thing. I'm afraid I may have to have another surgery in a month or two to make sure that my eye is protected from injury or infection. It's not closing completely and it hurts to close it at times. Ah, the joys of having Graves disease. 


I'm so tired all the time, I can't seem to get enough sleep. There's so much to do to get ready for the trip and I'm afraid I'm forgetting things. It's been exactly two years since we came back from the first mission trip. Actually, exactly 2 years ago I had my second lumpectomy; they removed the sentinel node to check for cancer and tried to remove another mm or two to get clearance on the perimeter. I had to get radioactive shots the afternoon before my surgery. That was very painful. Almost as painful as being awake for the eye surgery and also having a breast MRI.  They injected the 4 sides of the breast with no anesthesia or anything. I could feel it going in and the doctor was trying very hard to distract me. The next day, while I was in surgery, they made a cut on the sentinel node to send to pathology to check for cancer. It came back negative, so they closed that site up and then proceeded to remove another mm or two around the perimeter of the first partial mastectomy.   They thought the cancer was contained in the breast, if not the tumor. A week before Christmas, we went back for the pathology results. Would you believe that less than 5% of patients get a negative result and then when they do the pathology on the rest of the node, it actually is cancerous? What are the odds? Well, for me, that was the case. They found that the cancer had metastasized to the lymph nodes. The also could not get clearance for me to do radiation. The verdict was: try again for the 3rd time or have the mastectomy to make sure all the cancer has been removed from the breast. The surgeon suggested the mastectomy with tandem reconstruction. I already had 3 surgeries in one year, they didn't one me to have an extra one. I remember I cried when she told me that and Frendell just held me. The surgeon was very nice and she held my hand and told me she wanted me to talk to a plastic surgeon before we scheduled the surgery. She said I was still young and it was important psychologically for me to weigh in all my options before my surgery. I remember calling Ats on the way home from the hospital and crying and asking her to come over when I have my surgery. My story changed that day. Instead of having this minor surgery, radiation and have a good life, I now faced more surgery and course of treatment changed to chemotherapy. Those were very dark and hard days for me... sometimes I wonder how we lived through it. All our family flew in to town that Christmas. I begged Frendell to move closer to Loyola as I could not think of doing chemotherapy (at that time they were thinking 8 cycles every 3 weeks) while driving an hour or so each way. I wanted to be close to my doctors. Rachel got married after Christmas that year. I wanted to go but I just had surgery and I didn't feel that well yet. Already my energy level was affected and we were packing to move before my mastectomy, which was scheduled for January. How we survived, only God knows. But He sent our families, our church families, our friends to comfort, to provide, to hold our hands, to give us hope..... I was numb and just went through the motions. Poor Mahal took the brunt of things as he had to carry all the burdens... packing, planning and driving me back and forth to the hospital for more tests, to meet with more surgeons and get more blood work done... always more blood work...


Wow, sorry for the long walk back to yesterday. I am feeling so much better today. I am thankful to be alive. I am grateful we have another opportunity to go on another mission trip. God has been faithful and I can testify that He gives me hope every day...

oncology visit

Yesterday I had an appointment to see Dr. Robinson. It was eerily quiet for a Wednesday morning clinic; but then again it was the day before Thanksgiving and so maybe lots of people rescheduled their clinic appointments. I walked in through the glass door and the receptionist, Candy, greeted me by name. They are all very friendly at this clinic - one of the reasons I like coming here... but it really hit me how many times I've been there. People ask about my holiday plans, ask where my husband is (he usually comes in with me), am I cooking? am I staying in town or going to Cali? Wow! Not only do they treat my cancer, they really do treat my spirit as well. They are interested in me and my well-being. This Thanksgiving, I am thankful for so many things and one of them is that I have wonderful medical care and wonderful medical people who care about me. They have become my friends in this sterile world of cancer...


Dr. R is always an inspiration to me. She encourages me to travel, to do as much as I can handle but also to watch my stress level. She wants to make sure I am getting enough rest and sleep. She told me that she needs to speak with the endocrinologist because the thyroid medicine may be affecting the meds I'm taking for the cancer. Because I am in a study, she checked with the protocol board if I can take another medicine but was told no, it had to be this particular one. And, so far, it is the best medicine for the type of cancer I had. So, she will call Dr. M to figure out if I can take a different one for the thyroid. I showed her how my eye is retracting again and that the eye disease has not stabilized yet. I sure hope it will soon so maybe I don't have to have another surgery; but if it continues at the rate its going, i will need to have surgery again I think. I see oculoplastics in 2 weeks so we'll see what he says. Another thing we talked about was the lymphedema... I've had more swelling and a lot more pain on that arm, so she told me to massage it at least twice a day and put on my sleeve...


When I walked out of clinic E back upstairs to wait for Frendell, I couldn't help but notice that there were a lot of people there now. I guess cancer does not take the day off for the Thanksgiving holiday. People were there getting chemo, getting their blood work done, waiting for their doctors. I myself had to go to the Oakbrook campus to get my blood work done. I walked in the clinic and there was a long line of people checking in. I thought everyone would be driving/flying to grandma's house for Thanksgiving. Anyways, I had to wait for a little while but got it done. I'm there once a month so the lab tech is also starting to remember me and what's going on with me. 


Later on, I saw my patient. Poor thing was sick and was wheezing so we just took it easy for therapy. Last evening, we had our Thanksgiving program at church. I was so tired and exhausted but I really wanted to attend. It has been 3 years since I've been able to go to the Thanksgiving program on Wed night. Two years ago, we were in the Philippines for our mission trip in November and we arrived home on Thanksgiving day, so we missed that. Last year, I don't think I felt well enough to go so I missed that too. This year, I actually feel like I'm coming out of the fog and even though I was tired, I didn't have a cold and didn't have a lot of nausea, so I was happy to be able to go. It was a long program though and it was midnight before we were able to leave for home.


I know I am thankful, first and foremost to God, for He is good, His mercy and love overwhelms me. Second, I am thankful for my wonderful Mahal; this man never complains about driving me to different Loyola campuses so I can see my doctors, get my blood work done, get tests and scans done.... he waits with me in sterile looking waiting rooms and holds my hand to warm me up and to reassure me that he is there with me. Third, I am thankful for our families and our friends, both by birth and by choice/adoption, far and near, they touch us with their love and unwavering support. It is humbling to know how much people love and care for us. Fourth, I am speechless at the love and support our church families continue to give us. They have been through this whole journey with us, from my back injury/surgery, through the cancer and now with Graves disease. They have given emotional, spiritual and tangible support and have touched us in more ways than we can imagine.  Fifth, I am thankful for the many opportunities that have been given me. I am able to work more these days. But most importantly, I think, is the realization of what "gift" having cancer has brought me. I know two things have more clarity for me today: a. my faith is secure in a God who is alive and loves me no matter what and it is to my benefit to remember that He is there with me, no matter what challenges I am facing; and b. I am not thankful that i have had to experience pain and loss, for both have been great and hard for me, but that in spite of pain and loss, I can be thankful and have an attitude of gratitude. It is more clear to me now that I can give praise and honor and thanks to God no matter how dire the situation looks, no matter how much in pain I am, no matter how hard life seems to be. For He knows; for He is good; for His mercy endures forever.


I have so many things to be thankful for, today I am so thankful I am alive and am able to experience community with others. So, as you look around your Thanksgiving table today, remember to say a word of thanks, for those who are there and for those who have gone ahead, for each life has meaning and each life that surrounds you has touched you and changed you. What a humbling opportunity.... the power to change and influence a life. Hope indeed... happy Thanksgiving!!

treatment day

So, another day for a shot... had to wait for quite a while, since the nurse had to call the doctor to sign the order and then my medicine had to be ordered at the lab, mixed and then I can get my shot. Oh well... today was the first time I did not flinch when she stuck me with that needle. I had to self talk when I anticipated it. There have been at least two or three times when she's had to re-stick me on the other side because she said the needle won't go in because my muscles are too tense.  The wonderful thing about this whole schedule is that since I have to get in done every 4 weeks, my shot in January can be done the day before we fly out to the Philippines. Yeay!! Although i don't know if I'd like to have a sore hip and nausea for the 16-hr flight to Manila. We'll have to see...  and the eye doctor called to say that they have new lenses for me... i sure hope they work this time around. My left eye has retracted back alot again and I'm not sure if he'll recommend surgery once again... all is wait and see... in the meantime, another treatment day to check off the calendar :-)  Yeay!!!