Back in September, we had to deal with two life threatening conditions.
The first was a possible Category 4 hurricane (Florence) headed straight for us.
The second was JoAnne’s CA-125 numbers rising. The CA-125 is a particular cancer antigen they use to determine if there are ovarian tumors growing in her body. The previous June we noted the numbers had begun to increase. I think it was late August or early September we had another test performed (it’s a blood test). The numbers were trending upward.
When we start prepping for the hurricane I doubled-checked our insurance, then removed sails, stowed things, removed important-to-us items, stored things in a storage locker on shore, packed the car and prepared to run. The night before or the morning of our departure JoAnne received a message from the doctors telling her she needed to come back to Colorado and begin chemo within a few weeks. Sooner if possible.
We had a PET scan done here in the North Carolina area, and it was determined she indeed had two areas of concern. One, the one that frightened us the most was a nodule on her left lung on the upper lobe. The second was a small area that lit up the PET scan, between liver and kidneys. The lump on her lung was about 1 cm in size. Significant in that it seemed to be growing rapidly.
We departed on Wednesday morning, with no particular destination. She called her brother, Paul, down in Tampa Bay area and asked if we could visit for a time during the hurricane and he was more than happy to see us. So, we headed east and south along the pre-staged hurricane evacuation routes; there was no turning back once we got out of town. We had to leave.
We basically had said good bye to our home, Adventure, unsure if we would ever see her intact again. We figured insurance would help us replace her, or something similar if it came down to that. But, we have no allusions about such things. Insurance companies are notorious for NOT paying out on such claim, even with full replacement insurance like we have. (Note that after being hit in Cobbs Marina by a power boater, while we were docked, we no longer carry just liability insurance.)
The trip south was uneventful. We arrived. visited with Paul and Cathy, and waited with bated breath as we watched the weather applications on our computers and tablets. The forecast Cat 4 never happened. Florence did, however hit at a category 1 and destroyed several marinas to the north of our marina. We lost a few pieces of the marina (and there is still some damage to this day). Our own boat suffered minor damage (I could not easily remove the bimini as it has solar panels over the top of it, and I didn’t have enough time.
I had double and triple lined the boat to the pilings and dock, extra fenders and strapped the dock box down to the dock. It didn’t move and was fine. Adventure exploded a fender or two, stretched some lines and we got a couple tears in the old bimini. Minor damage considering some people lost their boats north of us.
We tried to come back… but, roads were out, blocked, bridges were washed out, floods were everywhere and getting back to the marina would have proved problematic with a lack of fuel in the area.
So, onward to Colorado it was. We saw her doctors, and set up appointments and a chemo schedule. Finally, we heard people were getting back to Southport, and we had a three week down time before chemo began. We hightailed it back to Adventure to clean up, repair the damage we could and prep the boat for the long winter of being away from her.
We simply left the boat in “hurricane prep” mode, and I dumped water tanks, and ensure nothing would freeze inside (the weather here rarely gets to freezing and when it does, doesn’t stay low enough for long enough to freeze the water). With the boat cleaned and ready for winter, we secured her once more and drove the 2000 miles back to Colorado for the fifth trip since June (For anyone keeping track, that’s 10,000 miles in three months, not counting the side trips, and the hop down to Florida, which was roughly another 1600 added in there.)
JoAnne began the chemo in November. Her chemo would be different this time. On “Day One” she’d have all the medicines to prevent nausea, plus two chemicals to fight cancer, one was carboplatium and the other gemzar (and I don’t know if I am spelling the two correctly, I’ll fix that later). Then on “Day Eight”, a dose of gemzar only.
Unfortunately, things began to go wrong. She had a tooth infection, and wound up having an extraction, and going on antibiotics, thus preventing the Day 8 chemo session. Instead three weeks later, the session and count down began again.
Day one of the second chemo session went well. Her blood counts however, did not do well. Again the day eight session was cancelled.
Each “session” was three weeks apart. By this time it had been several weeks. Session three was supposed to go as a Day One chemo infusion, then Day eight would be gemzar followed by Neulasta. (Neulasta is a chemical they give to kick your bone marrow into high gear to produce white blood cells, and because they were so low, she really needed to get that shot).
Unfortunately, her numbers were so bad, her platelet count was extremely low, red and white cells very low, that it was dangerous for her to be out in public even. So, they gave her the Neulasta shot, which is actually administered by a tiny robot module stuck to her arm. It is loaded, armed and placed, then sticks a person with a small needle, to inject the drug 27 hours after the chemo is completed. So, we have to monitor the device for beeps, lights and infusion. When it is completed it was my job to remove the robot.
Her blood cell numbers began to look better, but her platelet count continued to spiral downward and would not recover. We were very concerned.
Platelets, for those who are not well versed in medicine are required for clotting your blood. So a small cut can bleed profusely, and a larger would could become fatal in moments. You need to get the platelets back up to a normal number.
We watched the numbers, as she had tests weekly now, so another drive to the hospital, 45 miles round trip sometimes twice per week, we were at the hospital.
On Session Number Four, things start to appear normal. We went in and her infusion went well. She did not receive her Neulasta shot yet, as they wished to do the Day Eight Gemzar infusion. She did get red blood cells. We did that eight days later, on a Wednesday. On Thursday we went in for blood work and she wound up receiving platelets as those numbers were still extremely low. They gave her two units and then checked. Then gave her two more.
Earlier that morning she had noticed a small blemish on her face. It had gotten larger. Then we noticed numerous small, red dots, resembling measles on her arms and legs. We showed the nurses who then became very concerned.
At five PM, when we should have been out the door on the way home, her doctor ordered her admitted to the hospital. She was “Neutropenic“. This is a condition that results in low blood cell counts. Her platelets were practically missing, and a hematologist was called in.
She was put on bed confinement because if she fell or was bruised in any way, should could hemorrhage. The lack of white cells may have resulted in sepsis and could have killed her. She was in danger.
Four days in the hospital later, they had given her some drug to prevent her body from killing off the blood cells they were giving her. Apparently, her “Super Power” is killing foreign matter inside her own body. Except cancer. Her immune system was killing off the platelets they were giving her. They had to give her red cells and platelets once they stopped the body from killing it off.
In a couple of days she was feeling better, color had returned, the spots were gone and she was ready to go home.
The Gemzar was the culprit. They stopped giving that to her altogether, and stuck with the carboplatium.
Session Five and Session Six went without a hitch, other than lowered blood cell counts, and receiving the Neulasta shot on time 27 hours after each chemo session.
Three weeks to the day after the last chemo, like our regular clock-work schedule, we visited the hospital for a blood draw. Fourty minutes later, we were in the PET scan area. The numbers were back in 20 minutes. All great. Everything back to normal. Except her red blood cells. We think she is a bit anemic from all of the chemicals and she’s working to fix this with diet, supplements, and so on. Tomorrow, on Friday, we’d get the PET scan results.
On Friday… we saw the doctor himself. He was stern. He didn’t smile.
Then he said, “Well, the PET scan results came back. We see absolutely no sign of the cancer. The nodule on your lung is just gone. The other area isn’t light up. We DID see some cells around your lung, but, they are not lighting up as if they are cancer. It looks very good.”
JoAnne and I high-fived.
Wednesday the following week we were packed and were headed out. First stop was going to be Omaha area, to visit our son Jeremy, who had moved up there and was working. The car was completely packed and we sneaked out to avoid waking Nick, who had graciously allowed us to stay there for the whole medical adventure.
We left the key inside, went out the garage, secured the door with the electronic system and got in the car.
I put the key in and …. absolutely nothing happened. The car was dead.
We went ahead and got some assistance from the guys, and jumped the car. Left jumpers on for 20 minutes, and the car started right up.
We drove to Nebraska without killing the car once. That night we stayed with friends, and the car was fine. Started up a couple of different times. Next day we left for Missouri, pass through all the flooded areas, but no car problems. Checking the car that night when we arrived in Richmond, MO, I found the battery voltages were not at a normal 13.8 after running all day.
I assumed the battery had a bad cell. I went to Walmart because, as it turns out, some engineer is sitting there getting kickbacks on battery changes in the Dodge Journey. The battery is NOT under the hood. It’s not in the trunk. It’s NOT in the back seat. It’s under the left, front fender, kind of inside the engine compartment, but to get it, you must remove the wheel, the shroud covering the inside of the fender and then reach WAY up inside to unbolt the battery holder and cables!
Ok… 4.5 hours later at Walmart, the next issue happened. All of the mechanics except one young kid, had walked off the job leaving my car sitting on the lift, tire off, and battery not looked at. I, needless to say, complained.
At the end of it all, I personally reinstalled the wheel, taught the kid how to drop his lift, and made sure to Quality Control check his battery installation (because, he didn’t tighten the cables, and didn’t install the bracket to hold the battery down… which might have turn the car into a dangerous missile…..)
I went in to pay for the battery, and the lady at the counter apologized and said “No charge today, Sir, have a good day”. Just like that. Free battery?
Unfortunately, nothing in life is free.
On Wednesday two days ago, we left Asheville, NC en route for Southport North Carolina, about a six hour drive, give or take.
Everything went very well, except the construction, the crazy drivers and accidents scattered across the region. JoAnne routed us down and off some of the freeways to avoid accidents. Somewhere around 501 near Myrtle Beach and a couple of miles before the turn to highway 17, the car began making horrible noises.
Then a “battery light” came on.
I pulled into a random parking lot. I grabbed my multimeter which I am going to start carrying around on my belt like a TRUE Nerd from now on, and measured the out put of the alternator.
11.5 volts DC. Hmm… that’s not normal. Should be 14.6vdc or so. Yeah, alternator is NOT charging. Also some ‘grindy’ noise was coming from the engine. I listened carefully, and decided it was either an idler wheel, or the tensioner, along with probably the alternator failing.
With the battery at under optium voltage, and after discovering that it would cost 200 bucks just to tow the car around the corner, and have it “diagnosed” (not fixed, just tested), I thanked the lady I’d spoken too and said, “We’re going to try to make it to the marina. It’s only 52 miles….”
We killed all the power inside, anything charging inside was removed, radio killed, and I illegally ignored my turn signals and avoided stepping on the brakes.
This battery was brand new, and free. I was going to drive it into the dirt.
And we did.
We arrived a few moments after 5 PM, an hour later than we thought. At the corner of Fish Factory road and Long Beach Road, I again broke the law. The light was red. But, the car was freaking out. Weird lights on the dash were coming on. Beeps and buzzes from the dashboard I’d never heard before met our ears. I made an illegal left turn against a red traffic light. Of course, there were no cars, and no traffic as the bridge is still closed…. I then, for the third time that day, broke the law.
I went 10 miles an hour over the speed limit.
The car died as I backed into an open space in the lot.
The last bit of momentum took us to the curb. The car died. We were home.
That evening I came down, checked the boat, batteries and put the bed together.
Next morning I called the place that had worked on the car last June on the alternator (see, wasn’t the FIRST time we’d had issues). They have the car now, it was towed there yesterday afternoon at 2pm.
He called me three times this morning.
- Alternator shot, but under a lifetime warranty.
- Tensioner wheel is failing, bearings coming out
A new alternator is on order and will be installed Monday morning, along with a new tension wheel and mechanism (probably the spring).
Should have the car back by sometime Monday afternoon. The cost will likely be 300 bucks, give or take a bit.
(That’s all labor, and perhaps a bit for the parts).
I will NOT be surprised if the brand new battery isn’t shot too. We’ll find out soon enough.
Today is Friday, 5 April 2019.
Nothing in life is set in stone. Not even those “Death and Taxes” people talk about. You might avoid both if you’re smart, careful and even, at times, courageous.
One thing in life is certain though… if you don’t try, you can not do. JoAnne is a tough chick. She’s a lucky lady and she’s extremely courageous. She is my super hero. Used to be my Dad was my “hero”. But, after 40+ years with her, I’ve seen her face death with a smile and overcome it. I’ve seen her pick up a margarita a few hours after chemo and say “Why not have a little fun? I deserve a margarita!”
I’ve watched her cry quietly over this awful disease. Not for herself but for, the perhaps “missed chances” at things.
I watched her face light up when she holds our newest grandchild, Lincoln, and hug the other grands, and the great-grand daughter.
I have spend sleepless nights myself worrying about her, caring for her, getting her things, bringing her coffee in bed in the mornings and just being there to hold her when she wants me to.
Life changes, but you can either accept things as they are, or you can make your own plans and make your wishes come true.
Cruising life isn’t always about pretty anchorages, great sailing days, and seeing dolphins. Yes, those things happen. But, so many other bloggers and video bloggers show you all the “good stuff”. No one shows you, or tells you how much work it is to get ready for a hurricane, hoping it misses you by a long distance, and how much worry it causes you when you can’t be there to “protect your ship”.
We live our lives now around this boat and each other. It’s not always positive. Broken cars, engines, plumbing, leaks, hard rains, strong winds and sometimes broken facilities where you’re visiting, poor service at places (See Walmart above, there’s way more to that story than I actually told you) and even things like “uncontrolled dogs” that some cruisers bring ashore all work to dissuade a person from continuing.
We’ve been LUCKY on a lot of issues. We’ve also probably paid out a LOT more money than we had to at times.
But, I don’t think either of us would trade this life for a sedate house on a hill in Colorado again.
The best thing? Coming “Home” to “Welcome Home” messages from our dock friends. Our extended family.
And to that end, this little thing goes out to Kevin, Debi, Jay, Tina, Pam and Charles – a few of that extended B Dock family. Thank you for all of your thoughts, prayers, and looking after our boat, worry for us, staying in touch, checking my batteries in the boat (Jay), and watching over Adventure during the hurricane (Debi and Kevin). We can’t thank you guys enough. (By the way, I’m probably gonna need a ride to the place to pick up my car Monday… anyone? LOL)
This weekend and week coming up, I will be getting the boat ready for an extended trip. At this point, we have Abacos and Marsh Harbor in our sights. JoAnne, more than anyone in the world right now, deserves a break, an island, an island drink, a beach and a vacation.
I’m going to give it to her.