Rain, rain and more rain.

In the past 24 hours over 3 inches of rain has fallen.

Thinking of my Mom today with the rain. She would always say when we had a good rain, 'lovely weather for ducks'! In our neighborhood we have an overflow drainage area that is usually empty, but not today!

"You never know how strong you are until being strong is the only option you have. Anonymous"

August 3, 2010- Does your chewing gum lose it's flavor

I can't believe I have not written since March.  That means it is good news!  Gary went into remission after his last round of chemo and was re-tested a month ago and continues to be in remission.  His hair is growing back and there is color in his cheeks!  He looks so healthy! 

He lost one toenail and all of his nails turned brown, but only one fell off.

He continues to have peripheral neuropathy, but it is not getting worse.  He is unsure if it is getting better but we will take what we can get.

Gary has a different song he sings every morning.... when he feels well.  Today's song is Does your chewing gum lose it's flavor.  You never know what he will come out with.  He has been doing this for years!  He stopped during chemo, and I can understand as there wasn't much to be happy about during that time.

March 24-accident with Mercedes

We were on our way to NIH for many tests for Gary's re-staging.  I was in my car and a few miles in front of Gary who was in a Mercedes SLK 280, a very small black car, but very cute!

Gary was on 495 North, inner loop, heading towards Bethesda.  He had just past I66 (entrance ramp from I66 to 495 is on the left) and Gary was in the far right lane.  He observed an 18 wheeler entering 495 from I66 and watched as it crossed 3 lanes of traffic and was heading towards him.  Gary was honking his horn and flashing his lights, to no avail, as the trucker had no idea that he was there.

The truck continued on over into Gary's lane and Gary tried to speed up to get by him, but no such luck.  The front right wheel of the 18 wheeler hooked onto the driver's side of Gary's car.  Literally, they were hooked together traveling down the road.  Finally the trucker realized what was going on and stopped, I'm sure the noise must have been deafening!

The whole driver's side of Gary's car was dented and torn apart, but Gary walked away without a scratch!  Well he didn't walk away too quickly as he was pinned in between the truck and the Jersey wall.  The EMS suggested he try to take the convertible top down and have him climb out that way.  It worked!

Traffic was backed up for several miles because of the accident, and even made the news.

Gary called me right after it happened and said 'Jane, I've been in an accident but I am okay, a truck hit me'.  At that point I didn't know if the car was drivable so I drove back thinking i might be able to help him and drive him back to NIH.  As I drove past the scene, that is when I found out that it was an 18 wheeler... I couldn't believe it! 

Now what is even more amazing, the car was drivable and he made it to NIH in plenty of time for his appointment.  After the tests he drove to the Mercedes dealer and turned the car in and got a loaner.  We were afraid the car was totalled, but luckily it was only $5000 worth of damage and is being repaired now.

Here I am being very analytical about this, but when I think about what could have happened I begin to cry.  What an amazingly lucky man he is!

Celebration

Gary's last round of chemo was yesterday.  The PIC line is out and now it is dealing with the chemo side effects and then re-staging in 2 weeks.  The nurses came into his room as the last drip of Cytoxan was leaving the bag and sang 'For he's a jolly good fellow' and gave him a cake.  How sweet is that?

We went to our son Andrew and his wife's house after to celebrate with a pizza and champagne (sparkling juice for Gary).  It was great to be with family on such a momentous day.

Update on life

It h as been close to two months since I have added anything to my blog.  It isn't that there isn't anything going on, it is just that I have had a difficult time finding a few moments to write.

As I write this, Gary is receiving his last round (#6) of chemo.  The final dose being delivered tomorrow.  What happens after that is re-staging.  That will begin on the 24th of this month and then subsequent days after.  He will havea CT scan, PET scan, bone marrow biopsy, colonoscopy and lots of blood work. 

How is he doing???  Unfortunately the Bortizamib had to be stopped for the 5th and 6th round, due to peripheral neuropathy and now the vincrisitine was stopped for the last round, the 6th one.  His legs are swollen, especially the right lower leg and foot and the pain and tingling is present.  We are hoping that it will improve over time, but there is no guarantee of that.  He is doing well, other than that and seems to be tolerating everything else quite well.

A few weeks ago, we visited with Gary's neurologist to discuss his neuropathies and his Parkinson's.  After a very thorough appointment (3 hours) it was great to hear that though his Parkinson's is progressing, it is minimal.  That is such a relief.  Unfortunately the peripheral neuropathies are real and with an extensive exam proved very much to be so.  We are hoping it will eventually improve once the chemo ends.

We are adjusting... life is far from normal.  It's as if the elephant has moved into our house and is hiding behind a very sheer curtain.  It is there, but we aren't discussing it.  How much can one discuss it without breaking down all the time? 

I think once his hair returns and the IV's are out that we can move on.  Right now it is so ever present.

We don't talk as much as we have in the past.  It is stressful for Gary as it is for me.  I guess it is hard to look to the future until we hear what the results of the re-staging are.  We are disappointed that some of the chemo meds had to be taken away and worry about what that means for the future.

Last month, on the 19th of February, my sister-in-law, Betty Lee Davis, lost her fight with cancer.  She hung on for 21 months from diagnosis, which was way above what was expected.  She was told about 7 months.  I went to the funeral in Kentucky and Gary stayed home.  I am sure it is very difficult for him to hear about all of this.  It was horrendous for me, but I needed to be there for my brother.  He is in my thoughts all of the time.

Our friends are such a support to us, especially our Boston friends, Andy and Susie and our friends here, Diane and Bill.  Andy has come down here for several of Gary's chemos and Susie has been such a huge support for me.  Andy is helping Gary with finishing our basement.  It has been a great distraction for both of them.  Andy is Gary's best friend and his suppport through all of this has been such an important part of the process.  Bill has come over several times also to help in the basement and having the continued friendship with both of them has made all of the difference.  I am blessed to have Susie and Diane in my life (Gary too) as I am to have our children, Tammie and Andrew and their spouses, James and Meghan, to offer us such love and caring.  We are just so lucky.  I also have the women from my bookclub that are there for me at a moment's notice, especially Kristy and Linda.  I don't know what I would do without them.

Mouth sores

Once the crampy abdomen started resolving, the mouth sores came with a vengence.  It was so terrible he could hardly open his mouth.  It was another week of a liquid diet, smoothies and popsicles and oragel to help numb the mouth. 

The only good thing to come out of it was that on Monday after his routine blood work, we found out that he had reached his nadir.  He was at the lowest for his white blood cell count, below 500 (normal between 4-10,000).  This meant that the chemo was working... but also meant that his immune system was hanging on by a thread.  He wanted to continue to work and I was angry about it.  He could pick up any bug imaginable!  He promised me he would go to work and not attend meetings unless he could call in to the meeting.  By Thursday his blood count had gone up to a normal range and I could stop giving him the neupogen shots.  He had been having them for 8 days straight, but they did their work and elevated the white count.

On Thursday he called and said he ate a Big Mac for lunch!  I knew he was 'on the mend'!!  This weekend has been a good weekend, and he has felt pretty good, even doing projects around the house.

Next Friday begins a new round of chemo for him, round 4 of six.

We will enjoy these great days this week and hope that this next round won't make him too miserable and the worst is behind him.

Hungry?

For the past week Gary has not been able to eat solid foods without getting cramps and diarrhea, so he has soup and lots of Pedialyte.  We know it is from the increased dose of chemo he just completed last Tuesday, but it is still hard to see.  This is a guy who loves food and he doesn't even feel hungry.

He is weak, but he will not succumb to it and is constantly doing projects around the house when he is not at work.  Yes, he is working full time and I think, as does he, it is a great distraction.

We want to plan a trip after the chemo stops and hopefully we can make that happen.  First of all we don't know when it will stop.  We know he has 2 more courses of EPOCH-R and then it depends on the clinical trial whether he will not get anything or get Bortizamib twice a week.  The unknown is hard.

Round three

The chemo is finally effecting Gary.  It's not that it didn't before, he would feel a little weak, especially around day 9, but the new side effects are beginning at day one.  The bad taste in the mouth starts immediately and he assumes that is from the prednisone.  Our daughter made hard candies in different flavors, and that seems to be the only thing that helps.  He says that it immediately takes the bad taste away.

At day two the diarrhea hit and the nausea.

We are now at day three and he is still sleeping, so I have no idea what to expect. 

He will have to go in to the NIH for the chemo bag change today as he will for a total of 5 days.