Things to think about

This is the first week in the past 7 (!) weeks that we haven't had a dr. appt, biopsy, surgery, or test done. Seriously, for the past 6 weeks, we've had between one and four appointments a week between the two of us. Hooray for a breather! Next week it starts up again with A going radioactive for a week. But for now- it's nice not to be waiting on test results or a visit to a new doctor.

Sometimes I feel like I'm living in some horrible version of Flowers For Algernon when I spent time with A. His lack of a thyroid has effected his balance, coordination, energy and short term memory. This wonderful, smart man who previously flew airplanes with ease is now tripping, uncoordinated and has to ask me 3 times what we are getting at the grocery store. It only seems to come in waves and is a totally expected side effect of the treatment that will go away when his system is balanced again with medication. But it's still strange.

We made the decision not to put the baby quest on hold right now. It actually seems like a good time for it because A will be able to be around for a pregnancy, delivery and early weeks with a baby since he'll be off for a year. Although money will be tight, the family time is more important to us. So we're working with another specialist on that front. A may have cancer, but I'm doing my best not to let it effect our dreams and goals any more than it has too.

We are still considering the move to IAH. Although it will have to be deferred until treatment is concluded and A is stable, it still feels like the right thing to do. With the LTD, it won't matter where we live, but if there is a potential for supplemental income, we'll have to consider that as well.

For now, it's just one day at a time and enjoying life as much as we can.

Welcome to my new home!

Be sure to leave a housewarming comment

Finally some sunshine

It's been so hectic lately that I haven't had time to blog. I've finally got a spare moment. So many times I've been driving or doing something at home and a thought that I want to blog about pops into my head, but I don't have time to write about it at that moment.

A made it through surgery and is home doing fine. He is healing well and the surgeon says he is on the right path. The surgery was intense, but went well. He'll now sound like a grizzled old veteran pilot instead of the fresh faced youngster he is. We finally got a break and found an Oncologist who is also a pilot (CMEL) and previously was a flight surgeon in the AF. Not only has he worked with pilots in the past, but he understands all of the FAA regs and intricacies of medicals. And, he'll complete the LTD paperwork that we've been stymied with (b/c, it seems, that not a single Endocrinologist here "does disability paperwork"). I feel great about having him as a physician. The next step is for A to take radioactive iodine (on 4/1) and then later to have daily radiation treatments for 6 weeks.

The airline continues to be wonderful to us. Many generous pilots donated to our paypal account, most are people A has never even met. The Chief Pilot and Base Administrator have been working to keep us active (fingers crossed it's going to work...). The company is offering COLA's (company offered leave of absence or voluntary furlough). It doesn't bode well for the company to have an excess of pilots, but for us, it's a lucky break. If A can get one, it will give us not only insurance, but also flight benefits and seniority protection for another few months. If we make it to one year (just one more pay period now), then we'll also be eligible for FMLA protections.

Emotionally we are doing well. A says it's hard for him to believe he really has cancer because other than the surgery recovery he feels fine. It's almost surreal for him. It's a bit more real for me, as the one dealing with all of the doctors, company, friends and family. But we are doing well. I'm not one to get wound up about things b/c I know it won't change the outcome. I did finally have a crying session yesterday while talking to A and felt better about things afterwords. I can't complain about having a househusband around to help take care of things I don't have time for.
I think one thing I miss the most is my alone time. I'm either at work, in the car with Kidzilla (we commute together) or at home with both the boys. My bed has been invaded full time and I just always have someone wanting my attention. We've had (some sincere and some not) offers from friends to let them know if we want/need anything. Well what I really want is for someone to steal me away for a manicure, pedicure and an afternoon to read a book. But then again, I just want to be with my boys b/c I am away from them nearly 40 hours a week. Sometimes it's hard for this caregiver to find time to care for herself.

It's frustrating sometimes, to have to deal with whiney people who have lame excuses. It's prime time at my job right now, the busiest it is all year. Lots of paperwork being turned by people and lots of excuses about why they couldn't get it in on time and the like. All I can think about is- I'm sorry, you think you have problems? Let me tell you what I have on my plate b/c I guarentee it's more and I'm still getting my shit done on time. To each their own I guess.

This weekend we are going to enjoy the fine FL weather before it gets too hot. We've got a family hike planned on a trail we haven't tried yet. That's me, blazing trails in more ways than one.

The eye of the storm

Now that the surgery has passed and we are just waiting it out until the next step of treatment I feel like I can breathe again. The last two weeks have just been a whirlwind. Although I feel we managed pretty well, it's nice to have a break. We're still facing issues on several fronts, but we've had some people who have been absolute rainbows in the storm.

Medical- A made it through surgery and is home recovering well. He can only whisper and occasionally will make a nice croaking sound when he tries to talk. Some of the vocal cords were pretty damaged during the surgery so we are waiting to see if they heal. Surgeon said he could have just cut them out, but wanted to give them the chance to work again. He'll have a different voice next time it comes over the PA. Not having a thyroid is already starting to show its effects- he's sluggish, tripping more often and can't remember so well. We are having to switch Endocrinologists (his managing/treating physician for this ordeal) because the one he was referred to "doesn't do paperwork"- office policy. So she won't complete ANY of the paperwork we need for FMLA, short term disability, long term disability, FAA. We've got a referral to a new office and I am working on setting something up with them soon. The next treatment step is to wait for about a month and then take the radioactive iodine to knock out the rest of the cancerous cells.

Company- We've been in contact with HR, the Chief Pilot, the Base Administrator, ALPA Aeromedical committee, ALPA LTD/LOL committee, the LTD company, an FAA physician. Sometimes I feel like I am in a game of telephone because I only hear what gets filtered down to me and it is sometimes incomplete.

From what I understand, we are just weeks short of being with the company for 1 year (4/2 is our anniversary). Because we don't meet the year mark, we don't qualify for FMLA time, which would preserve our medical benefits for a few months. Instead, when A ceases to be paid and goes "inactive" we'll have to go on COBRA until the LTD kicks in to help us out. Also, the LTD pays out at a percentage of the rate you were paid while working. There is a huge difference between first and second year salary, so if we could just hold out until April, we'd see a lot more disability income. The pilot staff is doing their best to keep A active until April, but HR is being hardline about it. We brought up the idea of a sick time donation for A and had many positive replys from people willing to donate. However, the company doesn't have a sick time donation program so it seems like we won't be able to go that route. It's incredibly frustrating on our end, but there is not much we can do about it. So it remains to be seen whether we will meet the deadline.

Mostly, the company has been great. We were able to fly A's dad out to help us during the surgery push and we have had many well wishes come our way. A message about A was posted on the company pilot's forum and we were encouraged to set up a paypal donation account so people could donate towards our medical expenses. (Want to donate? Click HERE ) It's been wonderful to actually receive help from people we do and don't know as well as advice on things we need to watch out for. Several people we haven't heard from in ages have called to wish us well after seeing that post.

Friends- It's been interesting to see which friends have really come through for us and which ones seem to have disappeared. Our friend Bob who has worked to coordinate the sick time donation and forum updates. Our friends Erin and Tom (whom we only know electronically) helping us navigate company and ALPA info as well as recovery issues. My JetGirl friend Hillary and her husband for trekking out one evening to bring us McDonald's at the hospital even though they weren't anywhere near the hospital. And all our other aviation friends for sending their well wishes and calling and my local friends here in Jax for offering to babysit and more. Although we've been disappointed in some, I think A is feeling bolstered by the amount of people who have called with support.We were talking the other day about how generous people have been to us and how this is really a turning point for us to be more generous with other people as well. Although now is not the time for us, in the future we hope to be able to spend more time working with the same comittees that have helped us and giving more money to relief programs. Hopefully putting a face to the people who benefit from this kind of thing will make it more relevant for other people as well.

(related to old blog)-Some blog related issues- If you've been trying to leave a comment and were told you were spam, I'm sorry. I think the security has been raised on the site to prevent spammers. Nothing I can do about it, but I really do appreciate comments. I've been checking out other blog sites to compare so a move may be in the future.

Information Charlie

QUICK UPDATE

We made it through the surgery. The surgeon said A gave him a run for his money because the tumor was more invasive than he expected. It was wrapped around his jugular vein as well as extending into his neck muscle and reaching toward his ear. All in all, he removed the tumor, the thyroid, all lymph nodes and a portion of neck muscle. But he feels good that he got it all and the radiation will get the rest.

A is currently still in the hospital. He can't talk at all and has been using the notepad feature on his cell phone to communicate. Due to a bad reaction to some pain medication last night, we aren't sure if he'll be released today or not.

Information Bravo

After appointments with the Endocrinologist, the Surgeon, the General Practitioner, the Reproductive Endrocrinologist and phone calls with ALPA representitives, the Chief Pilot, the Base Administrator, the Long Term Disability company, the company HR department all in the last week, we have a good idea of what we are looking at. I feel like I am at the vortex of a paperwork tornado. And I am becoming entirely too familiar with the halls of the hospital complex. And only 6 days into the billing cycle, we have already used up 3/4 of our cell phone minutes (no small feat with our monsterous cell phone plan).

A has a papillary carcinoma, basically a tumor growing on his thyroid. It's growing at a fast rate and is intertwining with his vocal cords and heading up towards his ear. He'll be having surgery on Thursday, will recover for a month and then follow up with some radiation treatment. Then, we'll wait for the FAA, probably for months. The radiation treatment will be a challenge to say the least- 48 hours of not being able to be in the same room for more than 3 minutes, 7 days of not touching or sharing items. And endless humming by me of any song with "radioactive" in the lyrics (a particular 70's rock hit comes to mind) will add to A's misery.

The good news is that A will eventually be able to return to flying, once a special issuance is in hand. It will take 6-12 months from the conclusion of treatment to get that though. Long Term Disability and Loss of License insurance will help keep some money rolling in, thought not nearly a total income replacement. We are looking at having to maintain our health insurance though COBRA for at least the short term, which is not exactly cheap.

It is frustrating, to say the least, to have just gotten into this and to feel like the door has slammed shut in our face. It is hard to watch this happening. I could tell when the sad acceptance of reality came when A finally unpacked his suitcase, the travel soap reappeared in our bathroom and the blazer went to the back of the closet. The outpouring of offers of help from friends has been helpful; the genuine offers rare. I had to ask 7 people if they could bring me dinner at the hospital the night A will be there overnight. Although I have been able to maintain my daily functioning and occasionally keep some good humor, my private moments, in the car alone, are not always so pretty. There are times when I feel on the verge of tears for hours at a time. Most times I feel emotionally spent from trying to keep up on all the details.

We're getting through this one day at a time though and hopefully in the future, this will all just be a "remember when..."