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!