Sailing with Lupus

2012-01-25T10:34:00.001-06:00

Its been a year since I have posted here. As of the 17th I'm still cancer free. I still have to go to the VA every 60 days.

A few thing went on during last year. The VA built me a set of teeth. They are so big they would fit a horse. I am not able to use them. I still take most of my food (Ensure) though my PEG. I do eat some soft foods. Sure would like a steak. Nothing like a good steak.

Over the 4th of July a bunch of us at the marina sailed over to Port O'Connor to watch the fireworks. Then Lisa and I went on the a new marina to spend the rest of the weekend.

Very nice and relaxing. Nothing going on until December when a friend needed help bringing his boat back to Texas. He had been on a 2 and half year cruise. The last 6 months of the cruise he was alone. I meet him at the Cypermort Yacht Club in Louisiana. A 300 mile trip. The ICW was very interesting. We had fog, rain and cold.

very educational trip. When Lisa and I make the trip going east I'll post pictures along the way.

Our plan now is to leave right after my next appointment on March 20. When I have to come back for the next appointment I think I'll take our little truck back with us. That way I wont have to rent a car every trip and we can come check on the bus.

Making plans

2011-01-22T08:10:00.000-06:00

Been giving a lot of thought to us cruising again. I think I have it figured out since the VA wants to see me every six weeks.

After my last appointment in April we close up the bus, pack the boat and sail off to our first anchorage. It will take us about two weeks to sail the ICW to New Orleans. We would stay in New Orleans, anchored out, until my next appointment. We would catch a bus to San Antonio. Do my appointment then bus back to New Orleans. We could do this all the way down to the Keys but would have to fly back to S.A for my appointments.

I'm still kicking this idea around. One of our dock mates said just stay here in Texas. We are from Texas and have seen 90% of the State. We want to see something different.

Our dear friends, Charlie, Laura and Bob are leaving in a few days to Belize. They will be sailing First Light down. We were to go but don't have our passports yet and it would be harder to get back for my appointments. So we say good by again as we are dock locked for just a little while longer.

Major battle but cancer free

2010-12-03T10:21:00.005-06:00

It has been quite some time since I have posted here. Lots has happened from getting my PEG to finishing up chemo and radiation on June 29th. It was a major battle to survive the treatment. We feel that the VA did not tell us the whole story on how bad my cancer was. The doctors are surprised that I have done so well. I have included a photo taken during, trying to have fun and keeping it light.
Waiting on my Chemo treatment.

My Chemo nurse Wanda. She took good care of me.

The mask and radiation treatment

This is the mask that they locked my head down with to do the radiation. Photo taken my last day of radiation June 29, 2010

Me and Bobby asleep at Sally's

This photo was taken Fathers Day weekend. Walking dead.

We try to go to the boat every weekend to spend the night. It will be a while before we can take off for any length of time. I have to do follow up appointments every month and need to be off my total liquid diet before we can really go sailing. We would like to find a little larger boat as Miss Froggy has no standing head room. We are headed to the boat tomorrow to spend the weekend. Just maybe if I feel ok then we'll go out Sunday for awhile.

Teeth all gone

2010-04-16T19:25:00.000-05:00

April 13th. We took Jake and Ruby to my niece. She wanted to give the a home instead of SPCA. Well looking at the photos on her facebook they are in dog heaven. Which is great.

April 14th we headed back up to San Antonio for the next step. At 0730 the oral surgens started working on me. 3 hours later they were finished pulling all my teeth. I had to go back to them in the afternoon because I keep on bleeding. They have me on a liquid diet for the next 5 days or so. Then nothing but soft food.

We went over to CTRC to meet with the radiation doctors. Got there a 3:30 and it was 5 before we saw them. They forgot about me. The interview was rushed as they want to go home. So I'm not real happy with CTRC at the moment.

They want me to start radiation asap and don't wont me to wait until I am all healed up. Going to be a fight with them. I aint doing radiation or chemo until I'm healed up including the feeding tube.

Early morning phone call.

2010-04-12T19:55:00.000-05:00

At 0715 this morning the VA call and wanted me there by 1400 hrs. So Lisa and I loaded up to make a mad dash to San Antonio for my 1400 appointment.

We meet with the oral surgeons that are to pull my teeth. They spent about an hour explaining everything to us on what is going to happen once I start radiation. Sure doesn't sound much fun. I'll loose all my moisture in my mouth from now on. Boy walking around with cotton mouth sure will keep a fellow from wanting a dip. Sure couldn't spit the crap out.

Anyway they set up an appointment for Thursday the 16th at 0730 to pull all my teeth. I had the choice of being put to sleep or be awake. I took the awake part instead of being put to sleep. If I had choose the sleep part it would mean more trips up to see all the different clinics before they could start.

They want me to heal for 3 weeks before we start radiation. As explained the better I'm healed up the less chances of problems down the road. I'll have to live without choppers for a year and then only get uppers. They don't want me to ware lowers because of the soft tissue damage.

So Thursday I'll loose all my teeth then have the radiation appointment to talk about that end. On the 21st I have the oncologist appointment. Still waiting on the feeding tube appointment.

Well that the latest from here.

Another good day

2010-04-09T17:39:00.000-05:00

Went to have my hearing aids checked up this morning. The doctor told me to check with the doctors about my chemo/radiation meds as some of them can do permanent hearing damage. This I will do.

Got my first call from the Radiation specialist this afternoon. My first appointment will be a 1430 hrs on Thursday April 15th. I assume this will be a meeting with the doctor to get their end worked out before the treatment starts.

Another Health Update

2010-04-06T21:38:00.002-05:00

We were back to the VA today. Got the results on the surgical biopsy. Now we have a course of treatment.

ASAP they will pull all my teeth and install a feeding tube. After a short healing time within 3 weeks I will start the radiation/chemo treatment for 6 weeks. We will stay in a motel in S.A. 5 to 6 days a week coming home only as needed. The cost of eating out is going to be tough on my limited income.

After the treatment is up I will have monthly follow up visits for 6 months then if I'm doing well they will remove the feeding tube. Then for the next year monthly follow ups.

Lisa and I will still try to get some sailing in when we can. Our cruising plans are now on hold for at least a year. Bummer.

More Test

2010-04-02T07:37:00.002-05:00

We went back up Sunday to the VA for Monday morning appointments. They are wanting to do a surgical biopsy at the base and back of my tongue. Seems this is where the cancer has started. They did the biopsy Wednesday morning. We got home early Thursday morning. I got a lot of pain in my throat and up the left ear. I'm having a hard time swallowing and eating now. Hope this goes away soon.

Now the plan of attack is to be back up Tuesday to meet with the team of doctors that will be treating me. They will decide on cemo or radiation as the cancer is impossible to remove. That means they will pull all my teeth, let that heal, then start the cemo/radiation. This will last for 5 days a week for 6 weeks. We will spend most of the time there and only come home on weekends if I'm up to it. If my neck swells to much they will have to put in a feeding tube and I'll have to stay at the VA instead of the motel. The VA will not cover the cost of the motel for Lisa if this happens. We have no family in San Antonio that she can stay with. Going to get hard on money as my SS is not very much to live on.

Gotta Cancer

2010-03-22T22:28:00.003-05:00

Well thing are on hold for the moment. Got a call from the doctor at ENT this afternoon. The results of my ultra sound biopsy in my left lymph node came back positive with cancer. He is to call me tomorrow with the appointments to find the location where the cancer has started. Then he will work out a treatment plan.

Our plans on leaving or on hold until we can get this part of my health worked out. I did have an eye appointment today so that they can start my Plaguenil meds. Not sure it they will start that now or wait until after the cancer is taken care of.

Oh well just another day in the life.

Not a good day today.

2010-03-19T20:47:00.006-05:00

We have a p/u borrowed from a friend that is out sailing and it broke down. I thought it was the water pump. I changed out the water pump today to find that it is a freeze plug in the front of the block that is leaking. This will be a major job. Wasn't planning on repairing two pickups. Mine is down an electrical short that I can not find and needs to go to a shop.

One of our other friends that offered for us to store our bus, which we live in, changed their mind so now we have to find an RV storage place where we can store the bus while we travel. This picture was taken on our way down to Texas from Montana before I got sick.

Added some links of companies that we like. With some of them if you purchase anything from them we get a small fee. This will help offset some of our cost. I'll say a big thank you for any purchases that you make.

A little update on my health. I've had 15 appointments so far this year at the VA in San Antonio. All these trips to S.A. has taken its tole on our mental health along with breaking us. The VA will not help us in travel cost. I have to travel 200 mile one way just to get there. I would hate to try and remember how many trips up I did last year after this mess showed up. Beings a man one of the aliments that I also have (Kikuchi Fujimoto) is very rare. Two biopsies in my neck checking for cancer for one. Now I have a hard time turning my head to the left. Hope this will just be temporally.

I feel that I need to give everyone that comes here a break down on my conditions.

1. Lupus
2. Sjogren's Syndrome
3. Miss Connected Tissue Disease
and now
4. Kikuchi Fujimoto Syndrome

I feel that if I can help others with any of the conditions that I have understand they too can live a full life. I'll feel better and give me purpose again in life instead of living in a cave. I'll have to do the things that keep the flairs down. Oh I'll have flairs while out on this adventure but I'll do my best to keep it under control. I'll ware protective clothing, wide brim hat, gloves and sunscreen. The sun is my enemy.

Thanks for the visit.
David

Little up date on our plans.

2010-03-15T08:57:00.002-05:00

Not sure if we'll ever get out of here. Back up to the VA in San Antonio today for a ultrasound biopsy in my neck. Then back up on the 23rd for the results.

I've got one more port to install then all four of them are finished with no leaks. Still have to fix the companionway boards.

Welcome

2010-03-04T20:51:00.001-06:00

On February 20, 2009 I was told that I had Lupus. Back in February of 2008 I purchased a small sailboat to learn to sail and live out a life long dream. Well after the hidden Lupus showed up in June of 2008 and over a year of going to the VA for treatment. I came to the conclusion that in order to educate others that have Lupus and live in caves. I would take on an adventure to educate them that they can still have a good life doing what they want to do.

My plan is to take our sailboat, Miss Froggy a Starwind 22, from Port Lavaca, Texas to Fla. along the gulf coast stopping at different ports to let other Lupus sufferers see that you can still have a life after Lupus.

We plan on leaving here around the first of April with our first stop at Galveston. If you would like to help us make this trip a small donation would be greatly appreciated as we will be doing this with just my Social Security.

Thanks so much.
David and Lisa