As for Jeff’s passing out, we were hopeful for a while that the beta blocker was helping.  There were fewer spells and several times, he went 5-7 days without passing out.  For whatever reason, this is no longer the case.  Jeff has returned to passing out almost every day again.  For the past few days, he has been passing out twice a day.  Today, he was so weak he didn’t leave the couch except to go to the bathroom and passed out from being up that long.  When we went to the doctor’s office, he stayed in a wheelchair the whole time.  We are pretty sure he has gotten a few more concussions lately.  The doctor wants him to get a new cardiac echo done the next time he sees the cardiologist.  They just aren’t having much luck treating his passing out.  Sometimes, it seems like things will never get better, but that’s probably just my frustration talking.

As for his other health issues, I have been keeping a log of his passing out and other symptoms for two weeks now.  In 14 days, he has passed out 10 times.  He did have his helmet on all but one of the times, so that is good for his healing brain.  I don’t know if the beta blocker is actually reducing the number of spells, but he does seem to be feeling better in general.  He has his bad days, but he has had some very good ones too.  Yesterday was a bad one.  He spent most of the day looking pale and feeling weak and unsteady.  At times, he was barely able to get around in the house.  He told me at least three different times that he was having a hard time catching his breathe and it felt like his heart was fluttering.  We kept an eye on his blood pressure and heart rate and decided to wait it out rather than go to the hospital.  Today was a much better day.  He felt pretty good and even got out and cut the grass on the riding mower and did a few other small things in the yard.  The doctor says the sun is good for him.  Also, he chose to do this soon after finding out about the neighbor’s passing earlier this week.  He said he needed the distraction, so he rode the mower listening to music.  As usual, he kind of overdid it and felt extremely weak when he finally came in, but I think it was good for him anyway.  He is still fighting both pyshically and emotionally every day, but he is still here and for that, we are very thankful.  My heart goes out to Mr. Rosenburg’s family.  While I haven’t experienced the pain they are experiencing right now, I have lived with the fear of it for over two years now.  It is at least comforting to me to see the outpouring of love his family is experiencing right now.  With all the negativity in society today, it is good to know that our community is still here for each other in a time of need.

Monday, we went to see his family doctor.  After two months, Jeff still has a rash on his upper body and head.  The passing out certainly isn’t improving, but the helmet is helping to protect his brain.  He gave us some suggestions and wanted to wait until we had results from the cardiologist before making any other changes.  We will go back to see him again in a month.  In the mean time, I was instructed to keep a log of when Jeff passes out and what he was doing at the time.  He seemed to think that it might be significant that it often happens when Jeff tries to come down the stairs when he gets up in the morning.  I use the term “morning” lightly, since he usually gets up around noon.  Tuesday, we saw the cardiologist.  He said that there wasn’t a whole lot shown from the heart monitor.  There is certainly no need for a pacemaker or anything like that.  He said there were some spikes in Jeff’s heartrate that happened here and there.  Honestly, I didn’t fully understand what he was saying, but he said that those types of spikes don’t cause symptoms in most people but they can.  He said most people’s bodies can compensate for the spikes and it triggers certain changes such as sweating or dizziness.  Some people do not have this though and that may be the case with Jeff since he doesn’t always know these spells are coming on.  He is trying putting Jeff on a betablocker.  He said it is a long shot, but it might help with the passing out.  He said it probably won’t take more than a week to tell if it is going to help or not.  He didn’t seem very optomistic though.  If it helps, he will gradually increase the doseage.  If not, he will simply stop taking it.

Another thing that was discussed with both doctors was the possibility of absence seizures.  I told Dr. Sick about a spell that Jeff had last week.  It was just before bed time and Jeff said he felt weird, so we decided to go on to bed.  We went upstairs and were in the bathroom getting ready for bed.  Jeff was just standing there staring and when I tried to talk to him repeatedly it was like he wasn’t there.  He didn’t seem to understand what I was saying and after a little while, he started to lose his balance.  I helped him to the floor and he seemed confused.  It didn’t last very long, but it did seem somewhat like a seizure.  Both doctors suggested having another EEG and possibly seeing the neurologist again.  He hasn’t seen one in over a year.  We are going to try the beta blockers first and then discuss it again in a month.

Tuesday afternoon, we went to see the oncologist.  Jeff’s blood counts were still good.  He has to go there at least every six weeks to have his port flushed and his blood counts checked.  One side of his port didn’t do well.  He says it is like plaque that builds up in your arteries.  You have to flush the port regularly with heparin to keep it working.  It has a tube that goes directly into Jeff’s heart.  The tube has holes in it.  This time the nurse could get one side to take in fluid, but it wouldn’t return any blood.  They say it can form a flap over the holes that opens when you push in fluids, but closes when you try to draw out blood.  The is something stronger they can use to break up the clots if needed.  I imagine they will do that next time if it doesn’t resolve on it’s own.  The oncologist continues to go with the plan of stopping the maintenance chemo.  He is trying to focus on Jeff’s current quality of life.  Without chemo, Jeff really doesn’t need the port, but it is minor surgery to take it out.  We are leaving it for now, partly because if the cancer comes back and it is out, he will have to have another surgery to put in a new one.  Without an immune system, any procedure no matter how minor is risky.  His immune system is fine right now, but it wouldn’t be if the cancer came back.  We were going to the oncologist every four weeks, but we decided to go to every six weeks now in an effort to cut down on the cost.  Our co-pay is $70 every time we go there, or to any specialist.  Six weeks is as long as we can go because of the port.

Jeff got up a little earlier this morning and tried to come downstairs to be with Brandon while I took the other three to school since it was a late start day.  He started to come down at about 9:25 and passed out coming down the stairs.  This time, I did not hear him, but Aaron did.  I found them near the bottom of the stairs where Aaron was asking Jeff if he was alright.  Jeff was in somewhat of a seated position laying on his back.  He was wearing his helmet.  He says he thinks he sat down to come down the stairs, but isn’t sure.  After that, I decided to take everyone with me to drop the kids off.  After all, we don’t actually have to get out of the car at either school.  He took a nap for a couple of hours after we got home and seems to be doing better now.  He is eating lunch, so he must not be nauseated. 

I am happy to say that we finally got all the paperwork taken care of for the disability insurance on the house.  Monday, they finally made a payment catching up our mortgage loan.  While Jeff is on full disability, this insurance covers the principal and interest on our loan.  We only have to pay the escrow, which is awesome since COBRA medical insurance in quite expensive. 

The boys are doing great and I try to remind Jeff regularly that even though the circumstances aren’t the best, he is lucky to get to spend so much time with the boys while they are young.  He especially gets a lot of one-on-one time with the two youngest while the older two are at school.

Today was not as good.  Jeff has felt bad all day and passed out around lunch time.  He had hoped to go to a birthday party with 2 of the boys, but had to cancel.  He ate cereal kind of late, so he skipped lunch.  I made an early dinner of one of his favorites and he didn’t eat much.  He was complaining of nausea after only a few bites.  So now, he has had some compazine for the nausea and is sitting on the floor putting together legos with Mason.  Hopefully, tomorrow will be better.

After lunch with my dad and the little boys, we went to see the oncologist.  He checked Jeff’s rash and told what it was.  After doing a little research, he agreed that the cream Dr. Sick prescribed was our best option.  He said it is a viral infection that takes 4-6 weeks to heal.  One thing good about oncologists is they are used to dealing with chemo patients who get all kinds of weird infections, so they are pretty good at identifying them.  He checked Jeff’s blood counts, which were very good.  When we asked him if Jeff would be getting chemo, he said basically that he thought the chemo was doing more harm than good right now so he shouldn’t get it.  While he still has the back pain, it is less frequent and less severe than when he was getting chemo.  He also said that with the neuro tests showing problems already, further chemo could cause more damage.  He continues to say that there is no data on how stopping chemo a year early affects the chance of a relapse.  He said he can’t tell us what will happen long term, so he is focusing on how to improve things short term.  We really aren’t sure how we feel about this answer.  There are so many down sides to chemo and I worry daily about the permanent damage it is doing to Jeff’s body, but the worst thing that could happen would be for the leukemia to come back.  This would put us back where we started with induction chemo for 8 months again and then maintenance.  I just don’t know if Jeff could take that.  This is an impossible decision to make.