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.

Hair Friday, gone Saturday

The first round of chemo did its job on his hair.  He went to work on Friday with a full head of hair and a full beard.  When he came home on Friday night, he mentioned that he kept getting mustache hairs in his mouth.  I tried to pinch a small amount of his beard and it came out in my hand.  We both looked at each other, knowing what was in store for us. 

He took an adhesive lint remover paper and placed it on his face figuring he could remove the really loose ones that way, and that worked nicely so the beard shaving wasn't bad at all!  He then placed one on his sideburn and it got up a bit higher to his temple and out came a huge chunck of hair.  Another look of incredulity!  Now we knew it was time for the head shave.  As luck would have it, he had an appointment with our hair dresser for the next day.

By Saturday at 11:00 am he was clean shaven both on face and head.

Slowly the rest of his hair on his body is coming off, but this is taking longer.  I don't understand how the process works... it doesn't all happen at once, as he is still getting some new hair growth on his head, but it is sporadic and patchy so he needs to keep it shaved.  Same with the beard, though that growth is very very slow.

The mega chemo has begun

Gary had his first round of Bortizemib and completed that a week ago.  Yesterday was the mega day for chemo.  He was at NIH all day got a lovely cocktail of meds in his IV to include taking some home so it would be infused over a 24 hour period.  He has a pump and an IV bag and it goes in his arm through a PICC line.  He has to go back every day and get the bag changed out.  That goes on until Tuesday and then they give him a mega dose of something (can't remember the name now) and it is the one that could make him feel really crappy.  So far, he is doing fine with no side effects.  He was a bit nauseated on the way home from chemo yesterday, but it was probably my driving!  It was rush hour and there was a lot of starting and stopping.  That was it for side effects.  Oh, and he is on a whopping dose of prednisone.  140 mg twice a day for 5 days!  Every 3 weeks, he will get this round of stuff....  Hair should be falling out in a couple of weeks.

I hate this for him... I hate this for him... I hate this for him.

Chemo begins

Am I relieved or am I scared out of my mind?  Today starts the first round of chemo for Gary and I don't know how to feel.  Right now I am feeling a quite numb about it all. 

I hardly slept last night thinking about it and finally got up at 3:45 and got in the shower.  Why stay in bed when my mind just won't shut off? 

We have had a great weekend and a great distraction.  Our dear friends from Mass.  came to visit us.  It has been a huge distraction and for that I am grateful.  We had a Halloween party and friends came over to include our son, his wife and baby.  It was excellent!  Gary's friend helped him in the basement, getting it framed so we can finally get walls up.  That is huge.

We will leave for the hospital in about an hour.

Well meaning 'friends'

Tell me why it is when someone hears your story about cancer that they feel they must share every terrible thing that they know about it and then tell me how someone they know had some form of cancer and suffered terribly and died???  Why do they think I want to hear this?  Don't they know that I am just coming to grips with it myself and hearing the 'worst case scenario' is not being helpful?  I just nod my head and listen, but inside I am going I just can't stand to hear you talk!

Chemo begins this Friday.  Clinical Trial up at the NIH Cancer Institute in Bethesda, MD.

We are on an emotional roller coaster and I have to stop crying and start being supportive and strong.  When will that happen?