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....