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