YEAH

To quote the doctor "Complete remission!" 

We are so happy. because of the nature of the disease, of course we are in no way done with all of this, but at least we are looking good!

 

Jeff will go back in 3 month for lab work and a check up (not sure what will be different, but you know how it is.) Then in 6 months will have another CT to check things out. After the CT scan he will have the one drug, once a week for 4 weeks. We will do that every 6 months for 2 years. Research has shown that to increase the length of remission.

 

This last cycle really hit him hard. He doesn't like hot weather and the PA summer (who am I kidding, I think it was across the US) hit hard at the same time he was recovering. Then we threw in a 5 day stretch of midnight shift (which he hates and doesn't tolerate well) and an infection of some kind which we are still trying to get rid of and July was not real nice for him. But, the high heat has let up, he's back on the 3-11 shift he prefers and whatever infection has been bugging him is letting up. August is looking like it will be a good month!

post doc apt after cycle 6

Well, some good news, some bad news, some not sure what to think.

 

As soon as I sent the last update out, the chemo head and hangover hit Jeff pretty hard. We went to church on that Saturday night and then to fireworks after. We got home close to midnight that Saturday night. Jeff spent midnight Sat night until 900 WEDNESDAY morning in his jammies (other than a few hours on Monday when his family was here for a picnic) and either on the couch, in bed or on the lounge chair on the porch.  Turns out it wasn't the lack of fluids last time like we had hoped, but the cumulative effect of the chemo in his system that made the after effects so horrible. He still felt somewhat crummy on Wed but as the day went on, the feelings started to get better.

 

It is weird to me how fast things leave when they do. He was improving and felt okay to go to his cousin's funeral- although still badly enough that I drove to get there. But, just in the hours that we were there, he felt good enough to drive home and then go into work after. On the other hand, it doesn't take long to hit him either.

 

He is still saying this weekend yet that he at times feels like his head has stuff floating around in it that doesn't belong there. But he is able to work at work and here at the house and feel 'ok' to do it.

 

I thought we were done with our trips to Meadville for awhile now. Not so. He has to have another CT scan on the 21st. Then we go back on the 25th to find out what is up with that. If all is okay, we will talk about the "R" word. Dr. H left it slip then said he doesn't like to use it until he knows for sure. We also questioned something he had said before. Then he explained to us that he doesnt' like to talk about the next step until that step is there. He doesn't like to do the "if.... then...." statements. He'd rather know and then go from there. It helps to prevent disappointment and depressions if things go backward rather than improve. We can understand that, So, we are still waiting to find out what happens "if..." BUT he is saying, even if reluctantly, that if this CT comes back the way we think it will- showing nothing just like the one right after the 3rd chemo cycle- then he will declare the path to remission. After that, Jeff will need to have blood work and see the doctor every 3 months for a year or two. Then it will go to every 6 months and eventually every year.

 

keep the prayers coming- we want that definate remission diagnosis so we can work on the next step.

So, good news- getting very close to remission diagnosis. Bad news- Jeff had another bad recovery period. the not sure- still have more to go until we can settle closer to our pre-cancer diagnosis lives.

I'm feeling.... reflective?

You have to forgive me tonight. This post will be something only for the people who stumble across it or find it after I mention I put a new one on with the next update (doctor apt is tomorrow so it will  be anytime in the next 2 weeks since I am never very prompt.    )


Maybe it is because we attended a funeral today. Not just any funeral, but one for Jeff's 52 year old cousin. It just doesn't seem fair. Our hearts go out to Aunt Sis, Cindy, Jonathan, Amy, and the entire Hargenrader family. I personally never had the opportunity to meet Ed, but I felt his loss just the same. Every time I looked at his children, it seemed almost more than I could bear.  Again, it just isn't fair.

Cancer affects so many of us in so many ways.  I took care of patients with cancer.  I visited with our deacon's wife while she was in the hospital receiving her chemo (okay, so, walking into ICU and other restricted areas in my uniform and name tag as I left work got me into some places others in the church didn't always get to go, but she didn't seem to mind). But I remained blissfully untouched.

It wasn't until somewhere around  1996 that cancer personally touched my life. Living away from my side of the family saved me from some of it. That is until my grandmother lost her battle in December of 2004.

But now, 7 years later, there are SO MANY people. Prior to December of 2010 I knew of one classmate who was suffering from this horrible disease. Then of course, Jeff's diagnosis in December. Since that time, I've discovered another classmate, a classmates husband, one of the girls from a class close to ours, my brother's girlfriend (not sure how that one slipped by me!),  Jeff's cousin and most recently, one of my friend's mother-in-law.   I  feel so....overwhelmed by the numbers.  Six new people that I personally know in 6 months. That does not count the many other patients we've met at the cancer center during chemo treatments, or the stories in the paper about the little boy diagnosed with leukemia just before Christmas, or the fundraiser dinners for the guy who is going to Texas for special treatments, or the guy Jeff told me about who is traveling from around here somewhere to Philadelphia for his special treatments, or my cousin's father-in-law or the many other stories that have been shared during these last few months.

This same disease is affecting (or is it "effecting" I never can keep those two straight) each and every one of those people and their loved ones in a different way. We are all taking a journey none of us would have ever chosen, yet no one is traveling it the same way. Each one is taking a different path and using different vehicles to get there. While we know everyone is on a difficult road because ours is similar, we still don't know exactly how their path is going. All of the curves, the  hills, even the street signs are different for each journey.

Some people have very little time between diagnosis and the end of their battle. Some recover from their fight, reach a milestone and can claim they are cured. Others may fight again and again and again.

I am not happy that we are taking this trip. But, travel it we must.  I am grateful that our journey will be a long one. Although, I admit, I wish we were able to reach that cure. Medicine says CLL doesn't offer that. I'd like to think all the prayers our friends and family have offered can  help us reach that point. If that is not to be the case, we will fight the battle again when the time comes- (Jeff keeps telling the doctor that will be when he is 90- doc says we'll have to find a new doctor for that battle.) We also continue to pray for the rest of those who are traveling their own journey and those traveling with them along with those who have been left behind because the battle has already been lost.

Final Cycle.

Yes, yes! YES!!

 

We've gotten that final chemo cycle completed.

 

It is so funny how by week 3 of the cycle, JEff is feeling so much better. During week 4, it has been like he hasn't even gone through anything. He has tolerated everything SO much better than I had even hoped.

 

The first cycle he reacted to the Rituxin.

Second cycle he got the rash.

Third cycle he spiked a fever with chills.

I think we got by the 4th with no problems.

Fifth cycle he got pretty sick and dehydrated.

 

But each time, he rebounded back to normal before the next cycle. The doc told us not to expect that.

 

When we went back for a check up after the 5th cycle, the doc gave him a liter of fluids which helped to get him out of how he was feeling. he was already doing better  after calling off work for 3 days (first he's had to do that.) but that fluid gave him a little boost.

 

This time, he got fluids before the drugs just like in cycles 1-4. So far things are going very well. Of course, he tends to start feeling badly by late on Saturday or on Sunday so I'm not sure how fireworks will go this weekend, but we are gonna try it. Right now, he and the older boys are working on setting up a new pool.

 

We are keeping our fingers crossed that this time there is NO crummy feelings at all.