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!!!

scratched cornea

So I went to the eye doctor today. I had put on  my lenses this morning and low and behold it slipped to the corner closest to my eye. I tried to "blink" it out for a good 15 minutes, with no success. I asked Mahal to try and take it out, still couldn't do it. Finally got to the doctor's and thankfully they called me in as soon as I got there. The tech gloved up, put some anesthesia drops in my left eye and 'plucked it out'. His mistake, however, was instructing me to put them back on "so the doctor can see how they fit". Anyways, more lines to read, more bright light... in the end, the doctor told me not to wear the contacts for now and let the eye heal. He will talk to the lab and see if they can make some lenses that are not as thick as these ones and we'll go from there. He also adjusted the grade of the right lens so hopefully, if I do get new ones, I will be able to see better.


In the meantime, he gave me a plunger... really, literally a small plunger to suction out the lens if it ever slips off to the corners of my eye again (it has done so every day this week). Anyways, we'll see what the oculoplastics will say when I see him next month. It could be that my eyeballs are just bulging out more, and this combined with my high grade, makes my eyelids 'catch' the lens when I blink, causing it to move a bit. I'm just glad the eye doctor has not given up yet... we'll see what happens... it may be that I cannot wear contacts anymore :-(  in the meantime, I hope my corneas heal soon.. it really hurts alot...

EKG & chest xray

This week was a week in the hospital again. I had to get some blood work done to check my thyroid level and white count level and get titers for my HEP B levels. I hope that I still have the antibodies so I only have to get a booster shot, rather than get the whole series again. I also had to get a chest x-ray and EKG. Today I got a call from the doctor about my thyroid level. Woo-hoo!!!! Normal as of today!!! So, she will cut down to 5mg and recheck the thyroid level again in a month to make sure that it's staying at normal. Unfortunately for me, my left eye lid has been retracting again and it feels very dry and tears up alot. It's also difficult to keep my hard contacts in and whenever I close my eyes, if feels like it will come off. The endocrinologist told me that unfortunately there's nothing we can do about the eye disease; the antibodies have a mind of their own and has taken it's own course. I hope and pray that it will stabilize soon so hopefully I won't have to have surgery again soon. I haven't heard yet about the EKG and chest x-ray, so I'm thinking all's well there, otherwise I'm sure I'd have heard by now.


Life has been steadily getting busy. I have finally finished packing the 3 additional boxes we need to send ASAP to Mindanao. Please pray with us that they get there by the end of the year. I was hoping to be able to buy some chocolates on sale this coming Monday to put in the boxes, after halloween sales. We'll see....but the boxes will be sent on Tuesday for sure. It has gotten colder here as well and the first part of this week, it was cloudy, windy and sometimes rainy... we have had a windstorm go through several times. Bbbrrrrr.... winter is just around the corner... leaves have mostly fallen down.... great time to bake cookies and make soup. So, I'm baking vegan chocolate chip raisin walnut cookies. I can't seem to get the sweetner level quite right. I used blue agave today and I think it's too sweet.... I'll make some tea and have some fresh-baked cookies... yummy.. come on over and keep me company :-)  have a great week-end!!!

Mammogram

Today I was scheduled for my mammogram. Just one of those things I have to do... and because of my history, the tech told me that it's always classified as a diagnostic mammogram and not just the routine one. Plus because I just had an MRI done in Feb, they want to make sure everything is alright as well.  Even at 8 in the morning, there were already 6 of us waiting to be seen. There is a sense of camaraderie in the locker room, as we're all exchanging stories. One lady is a survivor for 25 years. She was nervous because they called her to come back in and she was afraid they found something. One lady was there because her aunt died of breast cancer last Nov. Another lady was diagnosed 2 years ago like I was. We compared notes and she was surprised to find out I had 2 different kinds of cancer. She thought there was only one kind: breast cancer. I told her there's at least 6 or more different types of breast cancer. I was shocked she did not know that, after all, she herself had cancer. I told the ladies if we had to wear these drafty gowns, they should at least make them pink. So I told this to the tech when she took me to the back. She told me that years ago, they had robes that the ladies could wear, warm, comfortable, not drafty robes. I asked her what happened. She said that they started disappearing. They'd be sent out to be laundered and less and less came back. It became a hassle to keep track of them so they resorted back to these good, ole blue drafty gowns. I was incredulous!! People stealing gowns that people wear for mammograms. How wrong is that?!?  


After that, I headed to the cancer center for my treatment injection. It is a scary realization that you've been around someplace so many times that people at the front desk can now call you by your first name and they just ask you for your birth date because it's a requirement to check you in or give you medication. The clinic nurses even give me sympathetic smiles since I was waiting for over an hour for the pharmacy to mix up my medicine. I tell you though, there is comfort in knowing that people there know me and they're looking out for my well-being. Even when I check out, they know to schedule me exactly 4 weeks from today, first available and no need to fill out a card. I'll be there :-)  I don't mind the wait so much. I have some books that I specifically take with me to these appointments and I've finished several of them already, all from waiting :-) for treatment or other things.


Finally after that, I headed back to the outpatient center. I'm telling you, by the time I went to all my appointments, I must have walked at least 1/4 to 1/2 a mile. Not that I'm complaining. Loyola does cover an entire block of buildings. Anyways, on to try my new gas permeable contact lenses. I was a little nervous, since I've only worn soft contacts since I was 16. It wasn't too bad. At first I couldn't see a thing and I thought, oh now, I've either not put it in correctly or they got the wrong prescription. I think the tech was hungry and eager to go to lunch. When the doctor came in, he rewashed and re-rinsed the contacts and I could see better :-)  In checking it out though, it was discovered that the right one needs to be a little bit stronger, as I can only see 20/40; the left is a cool 20/20. I told them I couldn't see any more beyond that line. It still annoys my eyes but I'm getting used to it. I've had to learn a whole new way to put them on and take them off. I hope this will help me see better... we'll see what my tolerance level will be.


After that, Frendell came and took me home. I'm so tired but I'm glad all those things are done. More appointments to schedule, more blood work scheduled next week. As soon as we got home, Frendell just gave me a huge hug and told me, "Honey, I hope that you'll be alright. I hope everything will work out soon". I wonder where that came from. Many times he hides how he feels and I never know what he's thinking. But once in a while, I get a glimpse of his uncertainty and worry for me. I know he's concerned, he just doesn't always voice them out. And frankly, I thought by now, my doctors appointments would be less... some are, but then new ones are added. I tell you, nothing like character development, right?  So, we plug along and do what we can. But the most important thing I read today from the book, Plan B by Pete Wilson, is that God is always with us in whatever circumstances we're going through. No matter how hard, how easy, how fun, how sad... God is always there.. and that's the most important thing He wants us to learn. The outcome does not matter. What matters is that we understand to our core being that He is there, that He understand, that He is reliable, that our hope rests in Him.  

Sick

The boxes were finally picked up last Friday... packed, taped, sealed and sent on it's way to Tawi-tawi, Mindanao. I hope and pray that the boat leaves port soon. Anyways, with our packed schedule since the beginning of the month and little down time, I think everything has caught up with me and I got sick. It started as a sore throat, then a sneeze, then a cough and low-grade temp. I just feel miserable and can't lay down at night or else I start coughing. Aaarrggghhh... I've been trying to hard not to get sick.. I guess it was bound to happen sooner or later.  I was so sad to have missed the visit of our friend from college. Art is in town for a convention and he went to church last Sabbath. Frendell was able to visit with him, but I stayed home because I had a temp and was coughing and just felt miserable. It's been almost a week since I started feeling sick and it seems to be lingering.


Oh well, this is hospital week for me.... today, I say the PCP. Can I just say how pleased I am with my doctors? I told her about the mission trip and asked her opinion. She was also excited when she heard about it; she had an uncle who was a missionary in the Philippines years ago. Anyways, she talked about the vaccines and shots I need to get before we go. She also asked me to verify how close the nearest hospitals were in the villages where we're going. She wants to make sure I would bring medication. She has referred me to the travel clinic so I can get some of my shots there. I will need about 6 shots and maybe malaria pills. Unfortunately there is not vaccination for denge fever, which seems to be rampant there right now. She told me to make sure to bring  insect repellant with DEET and also bring mosquito net. She did a physical and she wants to get some blood work done. She wants me to get the flu shot.. she's concerned about the H1N1 virus and she said that due to the meds I'm taking, my immune system is more compromised. She is glad that my white cell count is being monitored. She asked if the other doctors are aware of my plans. I told her yes... she makes 3/4 of the doctors who have approved of me going. I was so excited. She did discuss some things to do if I start feeling some symptoms when I'm there. Most important is if I even develop a sore throat, I need to stop taking one of my meds and try to get my white count checked as soon as possible. There are still some things to work out, but at least I've gotten the okay to travel. AFter she told me that I may need to get at least 6 shots/vaccinations, I told her I would have reconsidered had I known that ahead of time :-)  After she was done, the nurse came in and gave me 3 shots: flu, hepatitis A (I need to get the 2nd of the series in 6 months) and tetanus. The nurse was pretty amazing. The shots were barely stings and she didn't even tell me that I needed to relax. I may need to have the Hep B series done again or if my antibodies are still present, I may just need a booster. She strongly recommended  a rabies shot, just in case...  Just recently the CDC has posted a new virus found in chickens? And also something similar of hand, foot, mouth disease, something called Japanese encephalitis. I have a whole printout to read of all the things recommended. I've told Frendell to schedule a physical ASAP so we can complete our vaccinations... don't want to get shots right before we leave. I tell you, planning for overseas travel is so much more extensive now that it has ever been for me. I am grateful that I have people who can help me with this aspect of the planning. Most of all, I'm so thankful for the opportunity to go on this mission trip. I pray that nothing else comes up with me health-wise in the next several months... here we go.....

Packing up the boxes

This week is hospital week, as I call it. So many tests and doctor's appts. This month has been very busy for me and I think it finally caught up. The first week-end of the month, we had the first Filipino convocation, followed the next day by an anniversary celebration of our good family friends. That week, I tried very hard to pack as many of the boxes we needed to send to the Philippines. I finished 3 of the 5. We left that Tuesday to go to Atlanta for a leadership conference. Catalyst Leadership Conference is an annual tradition for us... we've been going the past 10 years and it's changed our lives and our paradigms drastically. We always learn something new and every year, we think it's the best and there's not way they can top it, and every year they have surprised us. It's as if the speakers are right here with us, facing the same challenges we're facing and then they go out there and give you pointers on how to meet these challenges head on. It's a very cathartic experience... I've learned more about myself and my spiritual walk whenever we go to Catalyst.


So we came home that following Sunday. On our drive home, we decided to stop by a national park in the southern part of the state. We took a little 2-land country road to cross from Kentucky to Illinois. In the map, it did not say that there was not road to cross the Ohio river. We had to cross by ferry... and what do you know, that week-end, there happened to be a gathering for bikers somewhere north of the river. So the ferry operators and the locals who were lined up ahead of us waiting told us that usually there's about 4 or 5 cars waiting on either side of the river, waiting to cross. That day, there were probably over 20 cars on each side. Problem is, the ferry can only hold 12 cars, 15 if there are no trailers... and then they try to fit in as many motorcycles as would fit. It was quite interesting. I took some pictures. It was quite a surprise and took us 1 1/2 hrs before we could cross. By then, it was too late to go to the state park. So, we just found a nice place to eat, had dinner and drove on home. Met some interesting people while waiting for the ferry, though. Maybe next year, we'll try to get down to visit that national park... it's called Garden of the Gods... lots of hiking trails there...


Came home and finished packing the rest of the boxes. God has really touched so many people's hearts with this mission trip. One of the kids I see for therapy goes to a daycare center. The teacher heard about our upcoming trip and donated several bags of clothes, school supplies, some toys, etc. Some of our church members in both Chicago Fil-am and Morton Grove Fil-am donated clothes and school supplies as well. I had to pace myself when I packed the boxes, coz I would end up with lymphedema every time I overused my right arm. I shouldn't have been surprised by people's generosity... but as I packed the boxes, it was as if God was reminding that He is the one orchestrating all of this. He was gently reminding me never to presume that I know what is best or to think that I know what is in someones heart. He nudged me alot and told me stop judging people's motives because I don't know what and who will be blessed by what has been given. It is a painful realization to face my own prejudices and even my pride, but as I packed those boxes, I found myself praying and asking for forgiveness for my own selfishness and my presumptions. I asked that my agenda be what God's agenda is and not my own selfish ones. I continue to find out that my faith is not nearly as strong as I thought it was. There was a huge part of me that kept wishing that we could pack up and send all the things they wished for, like playground equipment and school supplies and balls and toys..... I had to surrender it all to God and trust that He will use what has been given as gifts for Him. I know that the people who have donated, either in money or in kind, have done so to Honor God.... so, may these gifts meet the needs of the people in Mindanao. And my most ardent request to God is that the boxes will make it there by the time we get there....

What Cancer Cannot Do

What Cancer Cannot Do

It cannot steal eternal life

invade the soul

shatter hope.

Cancer cannot

destroy peace

suppress memories

silence courage

conquer the spirit

kill friendship

corrode faith

cripple love.

I don't know who wrote this beautiful poem about what cancer cannot do. I don't even remember accurately where I found it; I think it was at the American Cancer Society website. I'm glad whoever wrote it decided to share it with others. And I share it with you, to share with those you know are facing or have faced their own journey through cancer. It cannot silence courage... it cannot corrode faith... it cannot cripple love.

A look back...2 years ago

I am sitting here reflecting on the last couple of years. I want to write here some excerpts from my journal from 2 years ago. "On Oct 2, 2008, Dr. Fearon called me at 9 o.m. to tell me that I have a "highly suspicious tumor, intracystic papillary carcinoma". After having a diagnostic mammogram, ultrasound, biopsy, blood test, chest x-ray and an MRI, it was confirmed. We had many discussions between ourselves and then again with our medical team on what to do. We were scheduled to leave for a mission trip to Mindanao in 34 days. We decided that a lumpectomy will be done 2 weeks prior to our departure date to remove the tumor. This will be followed by our mission trip and then when we return, we will meet again as a team to decide on the course of treatment. They strongly suggest radiation as this has had the highest success rate in women who have had lumpectomies.

Through the announcement of our news 2 years ago, the floodgates of love, support and prayers have poured. We are truly blessed in more ways that we could have even imagined. My husband has held me and cried with me and talked with me about the changes that will inevitably happen to us. He has been and continues to be my tower of strength and courage. This has placed an unfair burden and responsibility on him and I pray that he will find comfort and relief through friends, family and support groups as we journey this road together. 

I am in awe of our family - the Velasco's and the Reyes's and everyone attached to them by blood or by marriage or by just plain adoption by love. They have been unfailing in their support, in more ways than possible to imagine. They have prayed, cried, flown here to be with us, sent flowers, cards, chocolates, oils, etc, more oils, etc, since my back surgery back in March 2008. What a blessed creature I am - to be surrounding by a loving, praying family - our anchor has been our faith in Jesus Christ. 

How do I even begin to express my gratitude to all our friends and church family, too many to name here, but so significant in how they've cheered us , comforted, supported and prayed for us and with us. On the night that my diagnosis was confirmed on 10/15/08, I was on the phone with Mom when I received a text from Mariezel. It said, "Let us know if you need n e thing cuz we R standing right outside ur window". Sure enough, at 10:30 p.m., Mariezel, Presa and Amabel drove to our house so they can share their love and comfort. I remembered thinking then that looking out my windows gave me the hope I needed at the time, when i saw the faces of my friends. We prayed, laughed and hoped and encouraged each other. I have always been fascinated by the beauty of windows - but that night I had a realization that windows are like doors of hope. When I look outside, I see friends who offer hope and prayer. When I'm outside looking in, I see warmth, comfort and love of family, sometimes friends, always my Heavenly Father. I call them my windows of HOPE. In the days that followed, so many other friends poured their love and support, from offering and giving me rides to my appointments, taking me to lunch, cooking for us, sending baskets of goodies, copying/faxing documents I needed for my state audit, listening to my fears and concerns and just being there with me, making sure I was not alone in facing those first confusing days from diagnosis. It boggles my mind how creative they have been and how they anticipated my needs before I even knew them. 

Through all the trials and challenges, my prayers is that i will decrease and God will increase. My His Name be honored and glorified in our lives, no matter what happens".  And so the story of our journey through breast cancer began... and 2 years later, we can honestly say that our faith has grown as we have grown through all the different challenges that we had to face. It is not always easy and there are still challenges even today, but we are surrounded by so many who have made sure we would not face these times alone. I fully believe that God orchestrated this whole journey so that I will learn that He is in charge of my life, that He knows what is best for me and most of all, that He will always be there for me no matter what happens, no matter what I face. It is a very difficult lesson to learn, but I am beginning to like the fact that I am learning it.

When God surprised me 2

Ah, you thought that was the end of the story, eh? Well, not quite. I got home on Monday and was browsing through the mail. Let me tell you a little background story that I'm not very proud to relate. About two weeks ago, I had decided to put together a newsletter about our mission trip this coming January to Mindanao. Fr & I discussed the pros and con. He preferred not to do one; he wanted to see what God will do to provide  and we'll go from there. It was becoming increasingly hard to tell people about SULADS and about the trip; I felt that it was taking too long to explain and I didn't know all the names of the places we were going to. So I told him that he will have his way and I will have mine. And mine was to do a newsletter. If we get responses, great, if not, then at least I can say I tried. So, I put it together and went to my address book to mail them out to people. Now mind you, I lost most of my addresses in a syncing mishap between my computer and I-touch earlier this year, so I didn't have very many addresses left. As I was going through my list, I felt this overwhelming sense of embarrassment. For one reason or another, I have always been embarrassed to ask for money, even if it's not for me, no matter how worthy the cause. I had to do some serious self-talk that morning, aloud too. I told myself that this is for God's work in Mindanao and I should not be embarrassed to ask for money on behalf of God. So, that hurdle was jumped. I came across several names that I thought I should skip because I know for a fact that they're struggling financially or would probably have other projects they're already sponsoring. That was a huge hurdle for me to jump; it was like pole-vaulting up to the sky. Again, self-talk, out loud. I prayed that God will give me even a little bit of faith and that I would stop putting Him in a box where I felt comfortable and believed I knew what He was all about. 


So, Monday, as I was browsing through the mail, two envelopes fell out of the pile of junk mail I was sorting through. I literally had to sit down and catch my breath. Why, you ask? As I opened the envelope of one of the cards that were sent, a check for $200.00 fell out. Do you know who it came from? If you guessed it came from one of those names I hesitated over, then you are so right. I read the accompanying letter and in it she wrote that she has always wanted to go and help with SULADS but never had enough funds or time; but when she heard we were going, she felt she could help us in our endeavors and she will feel like she's also gone and helped. I was crying as I finished the letter and I was so ashamed of myself for even thinking that I could predict who God will touch and who He will use for this mission trip. I sat for a long while contemplating on the lesson of God's surprises. I did not see that coming at all.  I wished Frendell was home so I could tell him all about it. In the meantime, I opened my FB and low and behold, his cousin from Cali had emailed asking if we could use kids and baby clothes to send. I hurriedly emailed back and said yes. So, I talked to her and in spite of all the challenges they're going through in getting their home fixed and traveling back and forth for work, they were touched by God to send some help for the little children in Mindanao. Again, who was I to know what people would be inspired to give? By the time Frendell got home, my mouth was kinda hanging open already and I was walking around in a daze. I thought I was so smart and knew who would give and who wouldn't... I was so wrong...


Not the end yet... early in the afternoon, I got a call from my former boss asking me if I would be interested in working in a new grant that she has just been awarded.  What?!?  I needed to lie down by then. It was as if God was standing next to me, bumping my shoulders, laughing and asking me, 'who's in control now? did you think you knew everything that was going on?'.   Although we are just in the exploratory phases of this latest surprise, it made me realize that I really had an issue with letting God take control of everything in my life. I had fully thought and expected that I could predict and I knew how things were going to happen, what needs to happen, how it would happen. Frendell & I were so flummoxed and in awe of all that's happening. I cried as I was telling him of the lessons I was learning. We couldn't sleep that night and just kept talking until the wee hours of the morning, excited to be in the moment when we realized that God was surprising us with His presence, with His grace and with His hope. I couldn't help but think about how the last two years have been. No doubt about it, it has been the hardest of our entire lives: broken dreams, broken health, broken finances, broken relationships, broken lives.... I think about a year ago, I couldn't sleep at night and I would think about how my life was now in a million pieces, scattered all around and I didn't know how to pick them up and put them all back together. That Monday night I learned a big lesson that I initially refused and resisted to learn... that I did not have to pick up the pieces by myself. If I had learned to let go of controlling them and allowed God to pick up the pieces for me, He would have gladly done so and He would have re-shaped me into the daughter He wanted me to be. I am so glad He gave me a second chance. I still don't know how all the pieces will fit together and what the finished vase will look like. All I know is that seeing His surprises were like getting huge, warm and comforting hugs from Him and this, my dear family and friends, have given me the greatest hope of all. I am crying even as I write this because in my brokenness, He has given me hope and courage and love.... and the greatest of these is LOVE because it is carried in the wings of HOPE. 

When God surprised me

Have you ever had moments when you were so aware that God was surprising you and it took your breath away? Have you ever had moments when you realized that your faith was nothing to what you thought it was? Have you ever been a situation where you realized that you had put God in a box and now He's showing you that He is not to be contained.  What a week we have had. I say we because Mahal and I are very much in this journey together. Last week was my week at the hospital, meaning between doctors appointments, treatment and blood tests, we were there almost daily. The good news is that it seems to be happening less and less, but every once in a while, it does happen and we end up in the same location several days in a row. And I ask why were the appts not made for the same day? Anyhow, enough of my complaining. The great news is that the medication for Graves Disease seems to be working. Dr. Mazhari, the most outgoing and friendly doctor I have ever encountered in my life, was so excited to tell me that the thyroid levels have now stabilized.  Yeay!!!! However, the eye disease remains to be seen. She said that we have to continue monitoring the thyroid levels and my white cell count. Over the week-end, I woke up with a temp and coughing and Frendell & I had a discussion whether or not I needed to go to the ER or wait until Monday when I was already scheduled for blood work. The doctor now gave us specific parameters to look for: temp of 100.3, sore throat, feeling sick, not feeling well, go to the lab and get my blood drawn; if the lab is closed, then go to the ER and then call her. She also wants us to look out for yellowing of the eyes and the skin. I told her I always had a tint of yellow in my skin, but she said it will be noticeable. She is keeping a close eye on my liver function and white cell count. If the thyroid levels remain a normal or close to normal, she will reduce the dosage. She gave me an okay to go on the mission trip!! Woo-hoo!! I will see her the week before we leave, just to make sure all my levels are as normal as possible. One down, three to go.


On Wed, after my tx, I was discussing with the oncology nurse that Dr. Fearon wanted Dr. Robinson's okay for an annual mammogram order. We weren't too sure how soon she wanted me to get one since I had an MRI earlier this year. By chance, or was it orchestrated by God?, Dr. R came out of a patient room, just as I was exiting mine with Janine. She asked how I was doing, so I told her all that's happening. I briefly mentioned that we were planning a mission trip. She asked where? So I told her. And I asked her if she thought it would be safe for me to go. She was so excited and and enthusiastically said "YES!!". Shocked Janine, as she was just telling me that she didn't think it would be a great idea for me to be in a place where medical help would not be readily available and I would be exposed to children/people who have not had the same vaccinations that I've had. Anyways, I looked at her in shock as Dr. R told her to check with the travel dept to see what shots I will need before hand. She does want me to have HEP A, B & C done before I go. So, I will talk with the primary, Dr. F and see what she has to say.  I thought the oncologist would be the hard sell in this whole thing. We still have to figure out what to do about my treatment for that month, but I'm hoping I can take my medicine with me and then find a doctor/nurse there to give me my shot. I was so happy and quite frankly, a little shocked, that she was so happy for me to go. She told me before I left that she was so glad to see me living life and moving forward, even with all the things that have happened. I wanted to cry but there were other patients and nurses walking around. At that moment, it really felt like God was giving me a hug. She remembered that almost exactly 2 years ago (Oct 2, 2008), I was diagnosed with breast cancer. And 2 weeks later, Frendell & I were in a conference room with the medical team, arguing and discussing whether or not I should go on that mission trip to Mindanao. It was basically all of them against me. Even Frendell wanted to cancel the trip; he wanted me to have the surgery right away and start treatment right away. I will post excerpts from my journal during those early days of diagnosis. If we didn't go on that first mission trip, this second one would never have happened. It should've taught me not to put God in my narrow box, but it is a long and hard journey for me to learn.  So, two out of four have already given me the okay to go!!! This was so different than the last time we went. Dr. R was so pleased at how well I'm doing and she was happy to hear that the thyroid levels are normal for the time being. We all know it could sway either way at any time, but for the time being, we are happy where it is. First "normal" levels I've heard in a while.  True life lesson, isn't it? Things in life could sway either way, but we need to learn to enjoy the moments of today and make sure we are living it to the best we can, for His honor, for His glory.  Great news, indeed!!!

Eye follow-up

So I went to see the oculoplastics a couple of days ago. He measured and checked. The incision is completely healed already. He said I could keep doing the exercise to see if the lid will go down a little bit more. He wants me to go back to the optometrist to see if I can be refitted for new contacts. He thinks that maybe the lid is in a different position now and this is causing the contacts to pop out when I put them on. I sure hope it will get resolved soon.  I can only put them on for an hour or so before they 'pop' out and I still have a hard time seeing from the left. He said that the eye has not 'stabilized' yet but its not retracting as fast as prior to surgery and my taking meds for Graves. So, that's good news for me :-)  I hope that things will stabilize very soon. The eye lashes are still poking the eye and this is causing some redness and dryness. He said the only way to really deal with this is to have surgery but he does not want to do until everything has stabilized. I pray that things settle down soon so I can see better again.


Today I got a wonderful surprise. Carol and her husband Roger came over and changed the spigot of the outside faucet. That was so nice of them to do that. I told Carol that I wanted to plant some flowers outside but didn't coz I had to haul water from inside the kitchen to the front just to water the plants. She told Roger and they came over today to fix it. I hope it will work. I am so blessed to be surrounded by people who help even in the minute details of life.  I hope you're having a great week :-) Take care of yourself and hope to talk to you soon.

Heart

 Just trying to plug along these days. Next week will be crazy with daily appts for blood work, doctor's appt and my treatment... why can't it all be scheduled for the same day????  sorry, that's my rant and rave for the day :-)


I've really been having a hard time with sleeping and I think it is starting to affect my heart. I've been experiencing a lot of heart pain and have been trying to determine if I need to go to the ER or not. Coupled with this is a cold that has been lingering so I've had an upset stomach and all and nothing tastes right or feels right, so I'm kinda confused. The tachycardia I know is from the Graves disease but I was thinking/hoping that that should've improved because I've been on the thyroid medicine for almost a month now and my levels should be improving. Sometimes I wake up at night and my heart hurts literally.... not squeezing pain but sometimes shooting pain. I've had some of these symptoms before, have had ECHO and EKGs done and it's always normal.... but sometimes I can't help but feel concerned that I should be paying more attention to it than not. I'll have to remember to ask the endocrinologist about the heart involvement for Graves disease.


The left eye continues to heal but I still am not able to put on the contacts. It's very frustrating as I have a harder time seeing with glasses -peripheral vision is so affected for me. I think the problems is that the left eyeball is bulging out further now that it's hard keeping the contacts in the eye; it keeps popping out. I can literally feel my eyeball protruding more than usual. Kinda scary and gross at the same time :-(   I'm still having a hard time seeing from the left eye.  I'm just glad I'm able to magnify the letters on email, otherwise I wouldn't be able to update or read email and stuff.


We continue to pray for and plan for the upcoming mission trip. Everyday I self talk that it's good to focus on someone else who has less than I do. It really helps me from feeling sorry for myself and I realize that inspite of what I feel I don't have here, there are so many that have even less than me. I've written up a newsletter  about the mission trip, where we're going, etc. I promise I will talk to all the pertinent doctors before making the final decision to go and I will ask if I am medically stable enough to go. I think I am as the  medicines all seem to be doing their jobs. To be honest, Frendell does not want me to go and would rather I stay, either home or in Manila, but I'd really like to go and meet the indigenous students, take their pictures and tell their stories  to you. I can only do that if I go. It will help remind me that life is bigger than cancer and Graves disease and medications and surgeries and blood work and treatment. But I know all those things have to be considered as well, so I will not be stubborn and flippant. I have been working with the medical team and will ask my questions and hopefully be able to make my final decision soon. Please keep us in your prayers. Frendell is crazy-busy with so many projects and work demands and driving me to my medical appts.. poor guy needs some alone vacation time just to recuperate :-). As soon as I can go back to work and earn some money, I will send him on a fishing trip ALONE :-)


Have had some distressing and heartbreaking news from some friends lately.  Been praying for them and hoping that healing will start now; most of all I pray that they will feel the love and support of a community of people surrounding them. It constantly reminds me that life is not just about me and my needs... I am trying not to be so selfish and I'm hoping that in focusing on others and their needs that God is reconstructing my heart to resemble more His heart for others. I thank you all for your love and support and I hope we will open our hearts to His calling, His whispers. 

Follow-up

So I've seen the doctor twice since the surgery, Friday and Monday. On Monday, Dr. Yoo says he's pleased with the progress and healing that's going on. The swelling is starting to go down and so is the pain. He has told me to stop icing but continue with putting the antibiotic 6x/day. I still take tylenol but not as often as before. On both visits, I could not see out of the the left eye. He assured me that I should be able to see out of it soon enough. Apparently the bottom eyelashes are still poking straight into my eyes causing some redness and discomfort. It hurts to even blink but I know it's starting to heal because it sometimes gets itchy. I can't wait to b e able to see I haven't been able to walk out for exercise because I'm afraid I'm going to trip on something. i hope I'll be able to wear contacts soon :-)


The last several days have brought so many friends to come and visit. They brought food, flowers, cards, gifts and lots of love and prayers. Mahal and I are overwhelmed by the outpouring of love and support that have been sent our way. God has blessed us so much and I am humbly reminded that He is taking care of us and our needs. Last night, a very special family friend came over and during our visit she reminded us the God is with us every step of the way, even though we may not 'feel' He is around, He is there and He understands how we're feeling. I am so thankful for healing and for the great care I have been getting, from so many people.


And even as I am getting better, I received a call from a dear friend who told me she just got diagnosed with breast cancer herself. I felt so bad and wished I knew how to comfort her during this devastating time.  It is never easy to receive such bad news. She is very hopeful as the doctors have told her the cancer is at the very early stages. I hope for her sake that she does not have to have such invasive procedures done. I keep her and her family in my prayers and I ask that you remember her in your prayers as well. I hope I can be as good a friend to her as she faces her own journey through cancer as she has been for me through mine. Facing cancer is never easy and i am so glad that I can be there for her as she and so many others had been there for me. Truly, no man is an island, no man stands alone. 

Post-op

So yesterday was the surgery to repair my retracted eyelid. It never ceases to amaze me how nice everyone is at this hospital. They try to make you feel comfortable and relaxed. I was not looking forward to having the IV put in and as it turned out, at the first attempt, I 'kicked out the needle'. The nurse had to get the anesthesiologist. He was very nice and was teasing me the whole time. He asked me 4 times if I wanted to get a local anesthetic first before he put the IV in and I didn't reply, but Frendell  kept answering for me, "yes doctor, she needs it". He knows me too well. I think I nearly broke his hand when I gripped it so hard when the needle went it. 


I really thought I would be mostly asleep during this surgery. I was wrong, although the nurse said I was probably asleep the first hour or so and then they woke me up quite easily. I could hear the surgeon talking to the assistant and the anesthesiologist. I was hoping I would not feel a thing, but apparently I flinched enough times coz I heard him say "local please"; and I know 2 or 3 times I actually said, "ouch that hurts, I can feel that". I'm sure he was not happy that I was awake because i asked questions and talked to him during the surgery. He probably wished he had knocked me out completely :-)  He said his main concern during surgery was bleeding. He also said he is not certain that the lid will not retract anymore. He said my eye has not reached a stable point yet, instead it has gotten progressively worse in the past 4 months. He is hoping it will not retract anymore but there is no way to tell. He does not think the medication I started will affect it in anyway. All I know is that I hope I don't have to have another surgery like this. Its pretty painful.. and I look like I've been in a barroom brawl, not that I would know what that's like, but I have seen some movies with fighting in it.  It was uncomfortable to sleep last night. Poor Frendell. I know I asked for tylenol every 2 - 3 hrs; he was a very good murse and told me I can only have it every 4. He has really come through for me in many ways. All the discharge instructions were given to him and he followed them to the T, even to the bag of peas for cold compress. Poor guy did not get any sleep either coz he woke up when I needed my meds. Today we have to go back to the hospital to see the doctor for a follow-up. They want to make sure I do not get infection in the surgical site. I feel tired and kinda queasy. The nurse said they didn't want to give me heavier narcotics so I don't get nausea and vomiting. 


I sure hope this worked coz I don't want to repeat it anytime soon. I am so thankful for a caring medical team; for a loving and supportive family; for our church family who came and brought food and flowers and comfort; for friends who prayed for me and cheered me up and most of all I am so blessed to have a husband who not only held my hand but continues to take gentle care of me, making sure that all my needs are taken cared of. Thank you everyone... I am blessed indeed. I would not survive this journey without you. No man is an island, no man stands alone....

Happy birthday Mahal

I just wanted to take the time out and wish my darling a very happy birthday. He has been been my rock and my strength and when I don't feel like having more treatments, he is my voice of reason and encouragement. I am humbled by his commitment and dedication to my recovery and even though my medical appointments take up so much of his time, he never complains or make me feel like it's a bother for him. He deserves a wonderful birthday celebration and I hope we will be able to do that today. Unfortunately, I have some appointments, but hopefully, it won't take up the whole morning. 

Thanks for all that you've done and continue to do for me, Mahal. I love you and am so thankful that you're my husband. So many others would have already bailed out with all the things we have gone through.  Thanks for staying and taking care of me and keeping your promise "in sickness and in health". You keep making me feel beautiful and loved, even though I know I look hideous right now. Even kids can't help it and say I look "creepy"... thanks for never making me feel that... thanks for helping me think things through and helping me make decisions about my health. Sometimes I'm so tired of it... shots, daily medications,  blood work, scans, MRIs, etc., etc., but you give me the reason to fight and you hold my hand and you take me to these appointments and you make me smile and laugh and live.... 

I wish for you a year of happiness, contentment and peace... and hopefully less medical appointments to take me to :-)  I love you with all my heart and I am so blessed to be your wife.  Happy birthday, darling... all my love...

Surgery scheduled

So I had my treatment today. Took the bus to the hospital since Frendell wasn't home. It wasn't too bad. It dropped me off almost to the front of the cancer center. There was a little bit of confusion when I got in. I guess it wasn't only us who suffered some damages. The basement of the cancer center, which houses Clinic E, also got some water damage so they had to relocate the clinic today. Fortunately for me, it was housed at the coleman center, where i needed to make an appt anyways for a new sleeve. So, I got all the appts scheduled that I needed and still got my treatment.


As I was getting ready to leave the hospital, the oculoplastics office called to schedule my eye surgery. They can only do it next week, the next availability is not until late Sept or early Oct. Oh well... we'll have to roll with the punches I suppose. 


The DeLeon sisters picked me up from the hospital and we spent several hours together, catching up and learning new things from each other. Interesting discussion about neuroanatomy and the frontal lobe. We had a fun time comparing experiences and looking forward to what's ahead. Wiwi is heading back to school next week already; hopefully we'll see her again before Christmas break.   Mahal is on his way home... I'm so glad here's coming home now. We still need to finish cleaning up the basement. 


I really hope that this surgery will help my eye... the doctor said that recovery should not take too long... I sure hope so :-)

Confirmed

So i got a phone call from the endocrinologist today and she confirmed that I have Graves' disease. She said that the specific antibody for Graves', TSI, was definitely positive in my latest blood test. She also said that my ultrasounds show nodules in my thyroid, but right now, it's too small to biopsy, so we'll wait and re-check in 6 months. If the nodules have gotten bigger, then she'll biopsy. She's hoping that this medication will prevent that or at least slow it down. She wants me to follow-up with oculoplastics regarding my eye. And I probably need to have the surgery soon because my eye is hitting my glasses at times and it is very uncomfortable all the time. Sometimes I even wake up at night because I'm tearing up and the eye hurts.

To add to my frustrations, our basement flooded Friday night/Sat when strong thunderstorms hit our area. We got 8 inches of rain in less than 24 hours and the electricity went out for several hours during the night. We got about a foot of water in our basement. Our pictures, shoes scrapbooks, journals and some books got wet and mostly ruined. Even my wedding gown got ruined. Our camping gear also got wet... Unfortunately, Frendell had to go out of town for his retreat and won't be home until Wednesday, so cleaning up will have to wait until he gets back. I've gone through several albums already and hope to finish the rest tomorrow. I hope I won't be too tired...

anyways, I will plug along as much as i can. I hope that things start to look up real soon..... at least it was cooler today that it's been.. but tomorrow, we're going up to the 90s again... that's way too hot for me :-(

?Graves disease?

So I finally got to see the endocrinologist today. She was very nice and answered our questions. However, she still did not officially diagnose me yet. I am to have yet another blood test to look for a specific gene or something that is only present in Graves disease. I think that's what she said; anyways, I am to have another blood test done like asap. She would also like to get my white cellcount, liver levels, etc before she puts me on medication. At this time, she does not feel that radioactive iodine is the way to go, because I already have ophthalmopathy and iodine may aggravate it. I am also to have thyroid ultrasound. She wants to check if there are nodules and she said it's something we will be monitoring. At this time, she does not believe that the chemo medications have anything to do with the thyroid. There are a couple of serious side effects of the medications she will give me, so as always, more blood work every few weeks. Plus I have to continue monitoring my energy level, avoid getting fever, sore throat, colds and watch for my eyes/skin turning yellow, which will indicate liver involvement. She does not believe that the medication will restore my eyes back to normal. She has deferred me to oculoplastics for anything related to the eye. So, back to more bloodwork, more scans and more meds. She thinks I may have to have another CT scan of the orbits in the future. So, that's the most recent update... sometimes I wonder why they don't just order one blood work to be done so that I don't have to keep going back. I have requested to get it done at Oakbrook because they are very good there.. always gets my vein at first try and only feels like an ant bite. Okay I'll post again when I get more results...

surgery

So there are more doctor's appointments and blood tests today. Saw the oculoplastics doctor again today. A resident and medical student saw me first, checked my vision, measured how far my eye is protruding and gave me the news that my eyelashes (that were pulled out by the other resident in early May) have grown back. Great :-( I refused to have them pluck it this time around, though. The measurements are worse now compared to last month. After talking with the doctor, he gave me two options: surgery to lower the lid (to protect the eye) or surgery to pull the eye back. The latter is the more invasive and e does not recommend that one at this time. We will wait until my appt with the endocrinologist and then decide when to have the surgery. The doctor says he does not think that the optic nerve is being affected right now and the reason I can't see if because my eyes are very dry. The worst part of the whole thing, well apart from the surgery is the only option at this time, is that my right eye is also showing changes. I hope it does not get worse than it is now. He gave me a new kind of eye gel to put on at night; hopefully it will keep my eye lubricated so I won't tear at night. So, the question is, to have surgery or not to have surgery? It is progressively getting worse and although it will eventually stop when the lid is wide open, I can't wear my contacts, my eyes are dry and most importantly, it's always at risk for injury. Frendell tells me he worries that I'll hurt my eye when I sleep because I don't close it all the way. Well, now, I have to decide whether or not to have surgery.... I really don't want to but what choice do i have at this time. In moments when I feel sorry for myself, I ask Frendell why these things are happening to me? I have to self-talk and remind myself that other people go through worse and I am very fortunate that Mahal has medical insurance so I can get the help I need. I am so grateful to God for providing us with what we need....

Results

Happy 4th of July to everyone. I'm so excited because I'm in DC and tonight will watch the fireworks from the National Mall, listening to the National Symphony give a concert at the west lawn of the US Capitol. I've always wanted to watch fireworks here on the 4th of July... here and Ellis Island in New York... so, even though I cannot see and my eye looks gimpy, I will go and enjoy it :-)

The nurse called me last Thursday with results. I didn't quite understand everything she said, but she did say, "high uptake and appears to be consistent with Graves disease. Dr. wants you to have another blood test and be see by on endocrinologist". I told her that the oncology nurse already insisted that I make an appt when I went for my tx on Wed, so I have one scheduled for later on this month. She said that the endocrinologist will likely be the one to diagnose me officially. I am really annoyed at how long this is taking. Evidence is quite blatant... you can tell just by looking at my left eye. I have started putting a cold compress over the eye a couple of times a day and it seems to help with the feeling of 'swelling', even though the CT scan in early May did not show 'swelling' behind the orbits. It does hurt and always feels dry; many times it feels like an effort to close it. I have to continue with putting the eye gel at night to prevent dryness. As you all know, I am vain and this is by far the hardest to deal with. It is cumbersome to wear my glasses, as it feels heavy and when I get sweaty, it is annoying as the glasses always falls down from my nose. What is hardest is when people stare at me because my eye looks like it's popping out. Talk about a blow to your self-image. Some people are too polite to ask what's wrong with my eye. Others, I can read by their expression that they are wondering. Some just come right out and ask. Come to think of it, maybe wearing the glasses have been a deterrent for questions... maybe if I have contacts on, it will really be more blatant, with no glasses for protection. The hardest thing with wearing glasses is not having protection from the sun. It hurts both eyes when I go out and the sun is out. Not only does it hurt, I cannot see a thing... I feel blinded by the light. This has caused me alot of frustration. It will be difficult to work and drive. I was finally able to order new glasses last Wed after my tx... so expensive... it will cost me $500.00 for a new pair of glasses... the lady said it will have transition lenses... I hope they work. I tried to see if they had those shades that you can just clip on to your glasses.. they do, but NONE fit my glasses, because my glasses are so high-powered, the lenses are thick and so none of the shades will fit over the lenses. Aaaarrrggghhh..... I sure hope they figure out what's going on soon. Some symptoms are also bothering me more than others.... I can't seem to regulate the cold/heat tolerance... sometimes I'm very hot and then all of a sudden, I will just get cold. Mostly at night, I am cold and need a blanket to sleep. I also have these moments of 'sweating' and the insomnia is back and is making me tired all the time. But I can't sleep even though I'm tired.

I keep telling myself that it could be worse, so just hang in there and wait until the dr's appt... but it is not easy and many times I do feel sorry for myself because not only do I wear such thick glasses, now you can see my big eye inspite of the glasses... more than that, the constant pain and dryness in the left eye is bothersome and sometimes I have pain and difficulty closing the lid on my right eye as well... I sure hope help and relief will come soon....

Thyroid Scan

Back at home, after being out west for several weeks... its always difficult to be separated from family and it was hard being away from home for some time as well. But back to reality of doctor's appointments and treatments and such. Today, i woke up and my left eye felt swollen and I'm having difficulty seeing things again. The situation is getting progressively worse and I am getting more and more frustrated. I could not drive to work today because I could not see. So, I ended up having to cancel my patients. Not a very good thing. I had the first part of they thyroid scan scheduled today. It was frustrating, as they did not tell me that it was at the main hospital. So, I started out at the outpatient center, where, aside from the cancer center, is where I usually have all my tests done. It was not in that location. Fortunately, i can walk through the hospital... 4 buildings later and almost late for my appointment, i found the room they told me to go to. Only to discover that I was at the main pt. registration office. Aaarrrgggghhhh.... fortunately it did not take too long, and after a few minutes, i was tagged and told to go down to nuclear medicine. Finally found it, only to sit in the waiting area for 40 mins before a doctor finally came to talk to me. She was very a nice. A resident... Dr. J and she asked me a bunch of questions and asked how things came about. She told me the eye is classic for Graves disease... optomyopathy, I think is what she called it... but she did not think that medication would help the eye go back to normal. She thought that maybe steroids would. She strongly encouraged me to ask the PCP to refer me to an endocrinologist. I sure hope that this scan works.

I was NPO for over 6 hours prior to this appointment. I was told not to eat more table salt, any seafood or kale for the pass 2 weeks. The tecch checked to see if I was 'radioactive' before I was given 2 pills to take, with radioactive iodine. I was told not to eat for another hour and then I can eat whatever I want except for the things mentioned above. I was so disappointed with what she said about my eye. there has got to be a solution for this because it has now affected my work and I need to be able to go back to work soon. I wanted to break down and cry but I told myself that I will find out the results of the scan, talk to the PCP and hopefully an endocrinologist, look at all the options and come up with a plan. I want to find out if my monthly injections and daily chemo meds are somehow affecting my thyroid function. I really hope that the scan will reveal something... my frustration is mounting and I want some answers and I want my eye to get better :-(

Okay... so that's what's happening so far. I have a drs appointment, my injection and then the scan all scheduled tomorrow... I am tired.. but I am thankful that we are finally getting some answers... more to come tomorrow...

Surgery Day-2

ICU Recovery nurse, Patricia... keeping track of her monitors.. she did well in surgery and they're just waiting for her to be more stable and more awake so she can press her medicine button..

Dr Christie... resident who checked the reflexes and movement in her feet... so far, so good...

Lauren woke up long enough to take this picture with me :-) she was smiling and in good spirits, although she was in alot of pain and had difficulty breathing... my eyes were really bothering me today and I couldn't put my contacts in today... my eyes were really red and was tearing up all day...

A big sigh of RELIEF.. we were worried for her, as she had a small seizure when they tried to start the IV pre-op... they monitored her very closely throughout the 7-hour procedure.. praise the Lord, she did very well.. thank you to the doctors and nurses and all the OR staff for a job well done..

Yvonne & Mom waiting to see her in recovery.. unfortunately, they didn't want anyone to visit her anymore because they wanted to see how she would do on her own... everyone's tired but so grateful for God's guidance and mercy through this surgery..

Now begins the long road to recovery... journey of hope continues