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....