simple does it

This year we kept it very simple...homeade cards(which I had a ball getting up early Christmas Eve to paint), we played some great games, and had even better egg nog (one for big kids and one for little kids and both with lots of whipped cream)! We had a fun time remembering past Christmas's and I was sad to discover that perhaps the kid's were well aware that dad and mom were realy Santa a lot sooner than I was willing to admit...at least they kept quiet and let me enjoy it for a few more years! haha. The dogs had a little feast of pig ears and the boat's lights sparkled on the water on a very warm and rather calm night. I am truly thankful to our friends and family who wished us well and to you all I wish you a very Merry Christmas and a Happy New Year!

Below are my homeade cards for the kids...

Stewarts card:

Katie's card:

MeRrY cHrIsTmAs!!

Family traditions...everyone has them. It may be buying special jammies handing them out  and wearing them as they drink hot cocoa, open family gifts and enjoy the spirit of Christmas Eve. All the while anticipating Christmas Day where by some miracle, no matter how old or how small, there is at least one gift or more from that mysterious man in red. This year we have a lot to be thankful for. Great friends, a wonderful family and most of all life. In our family, tradition has mainly been about making good memories..no matter how minute they may seem. We realy don't have a routine, in fact, some years Neil and I can't wait to share and Christmas comes almost a week early...other years a few days after...either way, it's all about building lovely memories that will last long beyond any gifts.

Below is my Christmas painting.

We were quite bummed when they cancelled Neil's appointment with the surgeon once again...but we are looking at it as "it wasn't in the plans." HIS plan. What is HIS plan for us? At this point only He knows...but as always, I am glad it is in HIS hands...takes a lot of pressure off, huh? haha...and with that let us all celebrate the "Reason for the Season," and I hope that all of our friends and family have a wonderful Holiday!

MeRrY ChRiStMaS from "Hand Full."

holidays on the water

Well you can take the girl away from land but you can't stop her from putting up Christmas lights! You guessed it, I just put up some pretty LED Christmas lights. I think it looks even more spectacular being seperate from the docks. The lights shimmer and twinkle in the water making for a very Halmark moment...I am not the only one, there seems to be quite of few of us moored boats that share the spirit of the Holidays.

This weekend is the first of two lighted boat parades. We hope to go to the first one at least which boast's to be even bigger this year! I hope to have a little video to show later.

Katie and I are still walking/jogging every day. I feel better every time I do it and we always enjoy going to the beaches to exercise. Every once in a while we come across a local artist who makes castles for the Hotel Del...can you imagine making sand castles for a living? How great is that? So below is one of her creations.

It has been rather chilly even for southern Cal according to the locals, but we are fast getting used to the chilly air and it definately helps to put you in the Holiday spirit, until you get to the beach, that is!

Tis the season...

It's December...can you believe it? I can't. It's nice to be in San Diego for another Christmas. We are looking forward to the lighted boat parade once again this year...should be coming up in a week or two.

Neil has had a few set backs with the surgeons as you all know, but is now scheduled in about 2 weeks to meet with one of the top spinal surgeons in the so-cal area. (not the 1 star rating doctor, thank goodness!) Good things come to those who wait, right?

We have not been able to get me into the doctor for a while because of insurance and financial woes as well...but I am going to be seeking employment this next week with hopes of getting our cruising kitty back into effect and also plan for Neil's upcoming surgeries should we need to become land lubbers for a brief time.

I know I wanted to be sailing off into the sunset right about now,actually right about a year ago, but it is a bad thing to live in the "if only's" and I am just thankful to be here, now, on this planet with the one's I love.

So to avoid getting sappy I will end it with this...Tis the season to count your blessings and may God bless each and every one of you.

the low down

Here is the low down on our current medical situation: This is a bit of a rant, but...well read on....
    
     I am no longer able to get medical coverage like before so this means no more treatments, tests, etc..the little bit of insurance we had before through the state via Neil's disabilty has now denied any further treatment or testing unless we pay $1500+ per month..ya right!

     Next...I applied for private insurance only to be denied because they consider this to be a pre-existing condition and I have been denied, twice....What does this mean for me, well it means that I have to save up to get the test's done. I am tempted to check into what it would cost to go to Tijuana instead...Meanwhile I feel good, and I am jogging/walking about 30 plus miles a week with Katie. I am watching what I eat, taking lot's of vitamins and am going to buy some Esiac Tea..a good natural cancer fighter...this is all I can do for now and so far, I am feeling pretty darn good, energetic, happy, and confident that I will not be sick this holiday season.

     Now for Neil: UGH...and UGH and a few choice words again. Well he has had 2 or 3 appointments to see spinal specialist's this month only to be told to go home after waiting in the office by their personel...reason given? The company has denied it...even though these very good, very competent specialist's were on "the list." Now we have been given a "specialist" who's online rating is barely over a 1 out of 5...he is a company doctor of course and this makes me FURIOUS!!

     Ultimately we get to choose his surgeon, I mean, come on! I don't care if I have to travel across country, I just want him to have the best of the best...I have heard too many horror stories to just say, "ya ok, cut him up."

     So what does this mean? It means we are down to the wire. I am hoping that we have the next two months to get him into a good guy, and out of pain...seriously he has been unable to move from the bed to the couch for the last week or so....and that to me, is UNACCEPTABLE!!

     So that is the low down...medically speaking.

     We did have a fun yet simple Thanksgiving, and we hope to meet up with friends later this week and are going to take advantage of the lovely weather tomorrow and head to the beach for surfing and boogie boarding!(myself and the kid's)

     Even with all the "crap" going on, we are still happy, still positive and still enjoying each day with each other...

more picture pages

I promised to share pictures of our day in La Jolla when we went snorkeling as a family....it sure was fun!

good news

We have some good news. I found out that I do not have lymphoma. The bone marrow biopsy proved to have good results, so praise the Lord!

I still have some insurance woes and lots more testing to do, but feel like I can breathe a little easier knowing that this test was negative.

Neil also got a call to let him know that he will be meeting with a surgeon the first of next month. We have been waiting so long to have a consultation with a good surgeon so that Neil can begin to get better. He has not been doing very well lately and the pain is getting more severe each day. This is coming at a good time and we are very thankful.

Katie and Stewart are doing well with online school and are enjoying all that living in southern Cal has to offer. They have lot's of friends and there is always something to do.

I am starting to feel realy good and my energy level has returned after having only two chemo infusion treatments, IVIG. It gives me a lot of peace until we find out a bit more to have these treatments knowing that I shouldn't be getting sick this season.

We hope to get some good sailing in over the holidays coming up and if all goes well, spend some time with our extended family...Jim and Kara.

Jack is here now too, so watch out A-9 ers! haha.

The weather has been great even with a few storms within the last few weeks. They are nothing like up north and never nearly as cold. Just a little rain and the Good Man just rocks us to sleep!

I am happy we are here and miss our "family" terribly, especially this time of year. To everyone, and you know who you are, we love you!

the big night

After a few long days of shopping we found "just the right dress" for Katie's homecoming dance. As you will see for yourself she looks gorgeous, supermodel gorgeous! It has been a fun time for all of us. This evening we were on our way in only to be met with an extreme low tide, but living on a boat and taking the skiff to and from shore is completely doable even while wearing a party dress. I have never seen anyone look so adorable in gum boots as Kate. Her friend Ralph took her. They have been friends for a while and she will be meeting up with a lot of the local kid's she has come to know since we moved here. This is another reason I am glad we are still here...this is a one time experience that I hope leaves a good lasting memory for her. The school has a fun night planned for them, far more glamorous than when Neil and I were kid's so we are at home anxiously awaiting the whole story as I am writing this blog!

I am still awaiting news on all my tests but feel nothing but peace no matter what and feel so very blessed. Enough of that, here's to Katie's big night!

update and homecoming

Ok, so I had my bone marrow biopsy and it was painfull but not near as painfull as when I had them shove needles into my lungs for a sample. I am glad it is over with and we should have the results in a week or less.

Unfortunately, they are hinting towards a low grade lymphoma. I have another CT scan and a few more tests later this week to double check but this is what we know so far.

Meanwhile I have another IVIG on Thursday and am taking it easy.

I thank everyone for their well wishes and thoughts and am sad that "Sailing Hand Full" has turned into a medical drama.

I will post the results when they come in and regardless I am enjoying the time I get to spend with my family.

Speaking of which, Katie has been asked by a local kid to "Homecoming." I think we may be more excited than she is about it.....I met Neil in 1991 and our first date was homecoming.... "memories..." Well again, I am sooooooo geeked about it and am looking forward to going dress shopping and such.

Below is Neil and my picture...

Don't ya just love my dress? And as you can see we haven't changed a bit! haha.

Here's what is happening in our neck of the woods

I went to have my kidney and spleen scan which turned out to be “no big deal.” I was just radioactive for about an hour or so while sitting lying still on a bed while the machine took pictures of my innards. Everything looked good.

Thursday morning I went in for my first infusion. They gave me a Benadryl and a Tylenol to start. Then after several attempts at stabbing my veins ( I have horrible veins…they are deep and they like to roll) they got the catheter in and we were able to start the 2 hour drip of “secret sauce.”

Well…I had a reaction. First my chest got really tight, followed by a little dizziness and a whole lot of face flushing. No worries…just relax…than all of a sudden I got huge cramps in my pelvis. It went from uncomfortable to “Oh My God! I think I am having a baby!” They quickly gave me an injection of Prednisone (steroid) and within 5 minutes or so the pain was going away. Just as it was easing up I told them I was a bit nauseous. As soon as they handed me the bag…yep, well goodbye breakfast.

They stopped the infusion and called the doctor. I knew it had to be done one way or the other so while they were talking with the doctor I was telling the nurse that I think I would be ok if the cramps stayed away and to please not send me home just yet. She told me that there were a few others that had been having similar reactions after getting up to use the bathroom…which I had done also.

The doctor told them to give me a bit more Prednisone and proceed but this time at a much slower rate. He said I was going to have a reaction no matter what because I had nothing in me. Give me the steroids and I should be ok…that is what they did and instead of being 2 hours, it was more like 6.

I will not complain, it was very tiring day and it will be repeated every 3 weeks from now on until he says it’s ok to just take injections at home, like insulin, which may be several months away.

The doctor’s have said they want to continue to test me while I get treatment so the cause is still unknown. Now they are looking at genetics as a possibility. Next week, perhaps Monday, I will be seeing another doctor who specializes in Oncology. I will be having a bone marrow sample taken…yep, that one makes me cringe just a little..they will numb my hip and bore into it and scrape or chip off a piece of bone and use it for testing....."Aye Dios Mio!!" ....but I am good with it.

What we know is this : My B- Cells are not functioning properly and I kinda need them....What we don’t know is why. We will find out, soon I hope.

So enough about that…

This week we went up to La Jolla where we put on our wetsuits and snorkel gear and went out in the ocean. This is a cool spot. It has a lot of kelp beds and rock. There are tons of fish and little crusty critters like lobster and crabs and the seals like to hang out there too!

These southern Cal seals are so small and tend not to be intimidating like the stellar specimen of the north. I was hoping to see a few of them swimming around me but the water was a bit murky so only the brightly colored fish really showed up well.

After we got out we went over to the cliffs and tide pools as the tide came in pretty quickly and put on a beautiful little show of spray against the rocks as the sun went down. I can’t wait to go and do it again when it’s a bit clearer.

This is why I love this area. It’s October and we are out playing in the water. The moon has been incredibly bright these last few days and the weather is warm and windy thanks to the Santa Anna’s.

In a nutshell...it was all so beautiful and just what the doctor ordered. 

Neil is still awaiting scheduling to see a new doctor to start going over surgery details. They are keeping him stocked up with pills, but we really hate taking them. You can only numb so much and then your brain goes a bit numb too..he is really hoping to get some answers soon and start getting “better.” We have definitely learned about patience that’s for sure!

I will post pictures of our outings soon…the internet is not being very cooperative today! :o)~ (but I did want to update everyone).

having fun while we wait

Just in case you were affraid that it is all drama around here....be comforted by the fact that we are having fun while we wait. We celebrated a late birthday for Stewart by going bowling. We haven't been for a while and it is a far stretch from bowling on the Wii where I do a pretty good job. In real life...well let's just say I don't think anyone is going to be recruiting us anytime soon! It was fun and we hope to do it again soon.

The sunsets here are never ugly. It can be a miserable windy and wet day and by evening, the big man turns on the gorgeous solely for my benefit I do believe. Even the dogs get out and enjoy the view.

I know we sometimes get a little crowded around here if a few things are out of place but it is fun having a few four legged creatures aboard...and the dogs aren't bad either!

We have decided to let the scooters go...I know, I know, I said I would never buy another car...and well we didn't. We bought a future Baja grocery getter. It should get us around the dirt roads and mountain ranges, not to mention it is just plain fun. Katie is also in the process of learning to drive a standard, which was what I first learned to drive and so did Neil...so here's to not blowing up the clutch!! Only teasing. She is a real natural and much better than I was if I must be honest. Stewart is also working on getting sponsored by a local skateboard company. I tell you what, these kid's are well amazing and I (we) are ever so proud!

Tomorrow I go in for an hour and a half long liver test followed later this week by my first IVIG treatment. I just had another chest x ray and am also going to see a Hemotologist next week. My datebook has never been fuller...but I would have liked for it to be because of something a little more fun...but we are making the most of it.

 Speaking of which...Stewart caught one heck of a Flounder the other day and it is definately worth the bragging rights...Neil spends a lot of time sitting in the hammocks with a pole in the water...not a bad way to spend the afternoon especially with these odds!! (see below)

As you can see above and below, Neil is not the only one who enjoys those hammocks!!

Lately we have had a lot of bioluminescence in the water and a local article written stated:

"Red Tide gets the name from the color of the water during the daytime. The color of the water is due to the Algal Bloom, in which large numbers of aquatic microorganism accumulate rapidly in the water. This causes a discolored surface

The waves truly are 'Spongebob's aurora' at the top of the sea. So surfers in the region are grabbing their boards and heading out to surf the brilliant 'blue' ocean at night.I for one would not touch the ocean at night ... pitch black night ... 'Red Tide' is awing people in San Diego County"

We are hoping to go over and see if we can catch the wave show tonight. I know that when we are taking the dinghy to and from shore at night we leave a trail of over 10 feet of blue magic and even splashing your toes in the water make for a very "trippy" show...so put on the Floyd (or Roger Waters...uh thank you Barry) and splash them toes!

When it rains....

Here is the latest update on the two older crew aboard Hand Full.

Neil is going to have to have surgery. They are trying to get all the details and "permission slips" worked out. We are not sure when this will start but are hoping it will be before the end of the year. The good news is that it should provide a lot of relief to Neil and hopefully he will be rid of a lot of unnecessary pain. The down side: each surgery (three in total if all goes smooth) will require some serious down time. We are looking at all our options and may lean towards getting a flat somewhere down south here. There is a lot to think about but not to worry as nothing will be sprung on us and it all has to be planned far in advance.

As far as for myself....

Well it turns out the reason why I got sick so easily is because my body makes no antibodies, at least not right now, nor do they know for how long. This makes me 100% vulnerable to everything.

Solution: I will begin taking IV antibodies once a month. A sort of super solution of antibodies from thousands of individuals...as noted in a previous blog. My first big day is October 6th. I am excited and nervous but more excited to get some "good stuff" in me.

I will also be undergoing several tests, some invsive, some not that will clear up any other questions or concerns the doctors may have. I now have my very own set of "house" doctors at the Immunology Division at UCSD.

So there you have it.

Meanwhile back at the ranch, we are enjoying ourselves and each other, as always.

When it rains it pours, but I don't mind a little "singing in the rain."  I just don't like hail! :o)`

It's a Boy!!

If feels like it was just a few years ago that the doctor was exclaiming "It's a boy!" Neil and I were so happy.

 We have a boy and a girl both healthy and close together...."I hope they are best friends" and that is how it came to be.

Today Stewart, my little man, is 15yrs. old! Can you believe it?

He is just as handsome as the day he was born! Big bold hazel eyes and so happy go lucky. He has accomplished a lot in so little time and over the years he's added skilled sailor, skateboarding and several electronic experiments. (homeade fans and cucumber choppers, rocket and rubberband launchers). Not to mention he will kick your butt on X box live!! haha.

We are sure proud of him, and also of Katie. God blessed us with amazing kids and I have loved and continue to enjoy every minute spent with them.

So altogether now: "Happy Birthday to you, Happy Birthday to you, Happy Birthday Dear Stewie, Happy Birthday to you, and many more!"

                                                      
 Now, for the spankings! haha!