Let's Help Jeff

Today, we traveled to Simpsonville for our nephew’s birthday party.  In true Jeff style, he waited until the last possible minute to get out of the bed.  I’m guessing that is why he passed out.  He probably got up too fast, not to mention the bending over involved in getting dressed.  We were both exhausted since both Jeff and Mason coughed all night.  Jeff spent most of the party sitting down, but at least he was with other people for a change.  He is also getting very good at harassing both our children and our nieces and nephews any time they walk too close to him.  When Jeff and the kids are together, there is always a lot of giggling and screaming!  Around 4, Jeff passed out again after getting up to use the bathroom.  We are home now.  His is complaining about pain in his back.  I really hope we get some sleep tonight.  I think we could both really use it!

Filed under:
Jeff's Story by Wendy

Yesterday, we went to see Jeff’s family doctor again.  He said Jeff has an upper respiratory infection.  It is viral, so there isn’t a lot we can do.  He did give him a prescription to treat the symptoms while we wait it out though.  He said Jeff’s lungs sounded great, so we were very happy about that.  Jeff’s blood pressure was high, so we were instructed to keep an eye on it.  So far, it seems OK.  I think it might have been from all the coughing.  The doctor asked if Jeff had passed out since we were there last week.  He didn’t seem happy when we told him he had passed out twice since then, hitting his head both times.  He instructed us to go straight from the appointment to Wal-Mart to buy a bicycle helmet.  Jeff is supposed to wear it whenever he stands up.  Needless to say, he is not happy about it, but we are both trying to follow the doctor’s orders.  The idea is to protect Jeff’s brain while it heals from the previous concussions.  He is trying to do whatever he can to get Jeff back to work and back to a more normal life as soon as possible.  Our biggest obstacle is still figuring out how to stop the syncope episodes.  I guess we will take it one day at a time and work on what we can.

Filed under:
Jeff's Story by Wendy

Yesterday was a pretty good day for Jeff.  He felt better than he has in a really long time.  He was feeling good and awake in the morning, so he let me sleep in and took Dylan to preschool for me.  After we picked Dylan up at lunch time, we ran a couple of errands.  Usually, getting up and down so much makes him feel really bad.  At 2:00, we went to see the cardiologist to discuss the implantable heart monitor.  His EKG was good.  His blood pressure was a little high, but one of the medications he is taking is supposed to raise blood pressure.  Apparently, since the last time we were there, they have come out with some new technology and now have an external monitor that has no wires to pull loose.  You stick it to your skin and wear it 24 hours a day for 14 days.  You sleep in it and shower in it.  This solves the problem of Jeff passing out when the other monitor wasn’t on.  If I understand correctly, it records constantly.  There is a button he can push when he feels dizzy or bad.  I think that just flags that part of the recording so the doctor will look to see what was happening at that time.  It is also programmed to flag any time his heart rate goes below a set number or above a set number.  The doctor said this was better than the implantable one for Jeff because it doesn’t require surgery.  Jeff is prone to infection, so avoiding surgery is definately a good thing, not to mention the savings in cost.  In a way, I guess we are hopefull that they will figure out why he is passing out, but the doctor didn’t seem convinced we would learn anything new.  He says he still thinks it is orthostatic hypotension.  This is when your blood pressure drops when you stand up, cutting off the blood supply to the brain for a short time.  That is what they are treating him for, but one doctor swore it wasn’t that because his blood pressure is about the same when they take it sitting and then standing.  He said that they are taking it too soon after he stands.  I agree because Jeff doesn’t pass out immediately.  He usually takes a few steps and then passes out.  When we asked why it suddenly got worse, he said he thinks it is the chemo that caused it.  He also said that he is sure the chemo is to blame for the bone pain Jeff has experienced.  We discussed the fact that Jeff’s feet are always freezing, even when the rest of his body is sweating.  He said that the chemo has probably damaged Jeff’s autonomic nervous system.  He said Vincristine in particular is known to do this.  He said that most likely Jeff’s body is misinterpretting the signals from his brain.  This can cause any number of odd symptoms, many of which Jeff is experiencing.  One of the things it can do is aggravate orthostatic hypotension.  He doesn’t expect to find any problem with Jeff’s heart.  If this is the case, we will just have to keep trying to manage the OH and hope that it improves.  This seems to give more evidence that chemo is not the best thing for Jeff.

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.

Filed under:
Jeff's Story by Wendy

Today was doctor visit day.  Around lunch time, we went to see Jeff’s family doctor.  He seemed to have some new ideas for us.  He said he thought of Jeff when he was at a continuing education class at Sanger heart clinic.  They were talking about a heart monitor that is implanted just under the skin.  This would be beneficial with Jeff because in the past when he has worn a heart monitor, we weren’t ever able to catch an episode.  He would pass out in the shower, where you can’t wear an electrical device, first thing in the morning before he had put it on, or once he even fell down the stairs pulling off the leads and wires.  Dr. Sick said that they really need some data on what is happening with Jeff’s heart when he passes out.  We can tell them what happens, but the data from heart monitor would be much more helpful.  The biggest goal right now is to figure out exactly what causes Jeff to pass out and find a way to treat the problem.  In order to get his full neurological function back, his brain needs time to heal and that can’t happen when he keeps hitting his head.  He also discussed working on depression issues.  He recommended some simple things like more sunlight, exercise and taking fish oil.  Jeff has gotten to a point where most of the things that make him Jeff have been taken away.  He can’t work, which puts both emotional and financial strain on us.  We also rarely go anywhere.  Even simple shopping trips are challenging.  We simply have to find ways to get Jeff out and able to do more.  We are going to focus on finding ways to make Jeff better both physically and emotionally.  Dr. Sick is going to call the cardiologist to discuss the possibility of the implanted heart monitor.

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.

Filed under:
Jeff's Story by Wendy

This afternoon, Jeff and I went to get the results of the neuropsych tests.  For over an hour, the doctor showed me the tests that were given to Jeff and told us how he did and what each test was testing for.  We were pleasantly surprised that his memory is actually still pretty good.  He actually did pretty well on many of the tests.  She said she could tell he was and intelligent, high level thinker.  His scores reflected the type of work that he does.  While he did well or average on many of the tests, there were several that he did very poorly on.  She said that it was clear that his executive functions were very impaired right now.  She said that while he still can solve problems, his speed is much slower than it should be.  He has trouble concentrating and paying attention.  His ability to pay attention and focus seem to be going up and down constantly.  He could be given two tests seperately that test the same thing, and do well on the hard one and poorly on the simple one because at that time he was having trouble focusing.  She said that this trouble paying attention or focusing is what makes us and others think he has a bad memory.  She says it is not that he doesn’t remember what he was told, the problem is that the information never made it into his brain to begin with.  While there is definately some pretty severe impairment, we were happy to hear that the problems he has do not point to any type of dementia.  She also indicated that it was likely that this would improve.  Part of the problem with that is that it’s hard to know what is causing it.  We have always assumed it was from the chemo.  She said it normally takes about six months after chemo ends before the brain fully recovers from the foggy feeling that is caused by the drugs, known as chemo brain.  While this is certainly a possibility, she said that the specific problems he was having seemed more like a brain injury.  We discussed his repeated passing out and hitting his head.  After hearing how he regularly falls down the stairs, hitting his head on the hardwood floor or passes out smacking his head on a wall, she seemed to think that this was a definate possible cause.  If the problems are coming from a concussion, they would most likely resolve in time.  She said that concussion symptoms can resolve in a matter or weeks or months, but the problem here is that he has multiple concussions.  One doesn’t necessarily heal before he gets another.  The more this happens, the longer it takes to recover.  She compared it to what happens with boxers or football players.  He hit his head just yesterday pretty hard on the wall in our bedroom just trying to get dressed.  He has had a pretty bad headache since that fall. Then, this evening he passed out on the stairs, hitting his head again.  Now, he has a much more severe headache and vomitted the last time he got off the couch and he was only up long enough to go to the bathroom.  It is very likely he has another concussion.  Whatever the cause, she said it is clear that he does not need to be trying to work right now.  Solving the same problems he has in the past is much harder for him.  He can do it, but it takes much longer and is exhausting for him.  She recommended he remain on disability and not try to work at all for three months.  We will reassess to determine what to do at that point.  In the mean time, we still have to decide whether or not to do the remaining 10 cycles of chemo.  We also have to keep working to get him to pass out less and give his brain a chance to heal from the multiple concussions.  I just wish I knew how to do that.  All of our bedrooms and showers are on the second floor.  Jeff tries to come down the stairs on his rear end when he is feeling bad, but sometimes it still sneaks up on him and he ends up falling down the stairs again.  Many of the falls come from just trying to get out of bed or get dressed.  Each time, he hits his head on either the floor, the wall, or a piece of furniture.  She recommended we at least put some kind of mat or carpet at the bottom of the stairs to avoid him hitting his head on the hardwood floor.  All in all, the meeting went better than we expected, but he still has a lot of things to overcome before things will ever get back to normal, or at least closer to normal.

Filed under:
Jeff's Story by Wendy

After the medication changes Jeff’s doctor made, his passing out has improved.  I wish I could say it has stopped, but improved is all I can say.  He has gone from passing out 7-8 times a week to 3-4 times a week.  Jeff continues to feel very weak and rarely leaves the house.  He has been sleeping until about noon every day and then spends most of the rest of the day on the couch. 

We were very unpleasantly surprised this evening to find out that our medical insurance had been cancelled.  We were told that even if Jeff went out on disability in January 1st, our insurance would continue through the end of the month.  Jeff tried to get his sleeping pills this evening and was told our insurance was cancelled.  We were told we could go back on COBRA, but haven’t received any information about that yet.  I really hope this gets worked out, because Jeff recently had about 6 hours of neuropsych testing done.  I really hope we don’t get the full bill for that!  We go back next Monday to get those results.  They tested alot of different things, but one of the main ones was memory.  After the first test, they seemed confused.  They compared Jeff’s score to those of a person with a traumatic head injury.  Needless to say, this was very upsetting for Jeff.  I am very anxious to get the rest of the results.  They want to talk to me about Jeff’s memory and cognitive problems too.  I wonder if Jeff has gotten some degree on brain damage from passing out and hitting his head so many times.  They say chemo causes cognitive problems too, which may or may not be permanent.  This is not at all how we imagined things would be almost two years after his diagnosis.  It is sometimes very hard to imagine that things might ever get any better than they are right now.  The doctors don’t seem to have any answers for us either.  We are very tired of hearing, “I don’t know.”

Filed under:
Jeff's Story by Wendy

We just got home from seeing Jeff’s family doctor, Dr. Sick at Shiland Family Medicine here in Rock Hill.  This is all so frustrating, and while Dr. Sick does not have all the answers, he does still care.  He is honest about what he thinks, even if it’s not what we want to hear.  I understand that medicine is not an exact science and nobody can have all the answers, but I respect the fact that he is honest and still cares and always tries to help.  He is giving Jeff steroids to try to clear up a rash Jeff has had on his upper body for a couple of weeks.  He is increasing one medicine Jeff is already on and adding another to try to help with the passing out.  The main goal is to try to get Jeff’s body to retain fluid better.  The hope is that this will help him pass out less.  The plan is to make these changes to his medicine, cut back on his caffeine intake, and add fiber to his diet, all in the hopes of helping him retain fluid.  We will try these things and see him again in two weeks.  He is also wondering if his body is having trouble with the lack of steroids after he has had high dose steroids for five days every 4 weeks for over a year.  We still haven’t heard anything about the neuropsych testing that the Oncologist’s office was supposed to set up.  Jeff has left them a message about it.  I really hope things get better for him.  I can’t imagine what it is like waking up on the floor or at the bottom of the stairs in pain and not remembering how you got there.

The insurance company that handles his long-term disability has agreed to aprove his full-time disability while they review his case and while he gets the neuropsych testing.  His last day of work was this past Friday.  He was determined to make it through the week, but on Friday he passed out in the bathroom hitting his head on the wall and floor and had to take the rest of the day off.  He slept the rest of the day and hasn’t been off the couch much since then.  He did make it to the cub scout meeting last night with Aaron, though.  I’m really glad, since I know how frustrated he gets about what he can’t do with the boys.

We are still considering not going back on chemo.  The oncologist can’t give us much information one way or the other.  He makes it sound like if the cancer is going to come back, it will come back with or without the chemo.  Of course, we imagined that Jeff would feel much better without it, but between the passing out, weakness, and cognitive problems, we have been very disappointed.  Without the chemo, Jeff is more himself.  Our relationship is better.  He is able to play more with the boys.  Sometimes, to me it seems like the obvious answer, but then he reminds me of how terrible that first year was with the high-dose chemo.  At times, he has said that he wouldn’t do it again.  If the cancer comes back, he would have to start all over again.  No matter how many times I say we, the chemo is really about him.  I love him and can’t imagine my life without him, but I don’t know what it is like.  It’s easier to say what someone else should do than to make the decision when you are going through it.  Dr. Sick is going to help us find another oncologist to get a second opinion from before we make any final decisions.  For now, we will just keep taking it day-by-day.

Filed under:
Jeff's Story by Wendy

Today Jeff went back to the oncologist.  It was a very frustration visit to say the least.  We wanted to talk about how bad Jeff has been feeling lately.  He’s been passing out more that usual, been very weak, and had some drooping on the left side of his face.  The doctor didn’t seem interested in talking about that at all.  He said he wasn’t treating Jeff for that.  He only wanted to know if skipping chemo for 4 weeks had helped with Jeff’s back pain.  While the pain is not gone, it is a lot better.  He said he should skip chemo for another 4 weeks and then come back.  If the back pain has improved again, he said we could assume it is a result of chemo and Jeff should probably stop chemo.  This all makes sense to me.  I just expected him to care about the other stuff.  When we brought up going back on disability again, he decided to send Jeff back to the Neurologist for some kind of cognitive testing.  I just paid off all the other medical bills earlier this week, so of course they would suggest another specialist and more expensive tests.  For some reason, we thought the oncologist would be concerned about Jeff’s overall health and not just cancer.  I guess we were wrong.  Jeff is thinking about looking for a new oncologist.  If nothing else, he wants a second opinion before quitting chemo all together.

Filed under:
Jeff's Story by Wendy

This morning started much like many others lately.  Jeff was off, so he slept until about 10:45 and then passed out when he tried to come downstairs.  Luckily, this time he passed out before he made it to the stairs, so he didn’t come down them.  It is very frustrating for him.  Doing the most basic thing is difficult.  Last Thursday, we met with one of the owner’s of Jeff’s company and together they decided that Jeff would go back on disability full-time.  Besides the fact that the physical symptoms cause him to call in at least once a week, there are a lot of cognitive problems as well.  They seem to get worse when the physical symptoms do.  He forgets things a lot and sometimes isn’t able to figure out problems that would normally be very simple for him.  We all think that working is just too much for him right now.  We will have to go back on COBRA, but we will make it work.  Jeff is supposed to start chemo back tomorrow.  I will go with him to see the Oncologist so we can discuss what he will do.  It’s so hard to know what to do.  The thought of the cancer coming back is awful, but I just don’t know how much more his body can take.  Chemo is poison and it causes a lot more problems than just nausea and vomitting.  This is the start of a new year and I really hope that things will get better for Jeff.  I want to see him enjoy life again.

Filed under:
Jeff's Story by Wendy

We have had a wonderful Christmas with our boys and other family.  Christmas day was a lot of fun with the boys.  We stayed home all day and played.  Jeff and I got to put together the new lego sets.  Honestly, I don’t know what I would do with a girl.  I love boy toys!  Yesterday, we spent the day at my parents’ house with them and my brother and sister and their families.  We had a huge meal and exchanged gifts with them all.  There are 10 kids age 8 and under, so I’m sure you can imagine the noise and excitement.  It was a lot of fun.

For the past week, Jeff has been having more of what we think is Bell’s Palsy.  The left side of his face droops, sometimes affecting his speech so much that I am the only one who understands him.  It is usually bad first thing in the morning and at night, when he is tired.  He was supposed to go back to work today.  He still works from home, but usually has to call in at least once a week.  This morning, he overslept and then tried to go downstairs to the office.  He took his time and got up slowly and held on tight to the handrails, but still passed out and fell part of the way down the stairs.  I really hate that all our bedrooms are upstairs.  He hurt his left shoulder and right wrist, but neither is broken.  When I found him, his hand was caught in the spindles of the rail.  He ripped his shirt and got a pretty bad scratch on his back.  He also hit his head on the hardwood floor, so he has a pretty bad headache today.  Needless to say, he had to call in again.  Frankly, he was in no shape to answer support calls anyway with his speech impaired.  We got him to the couch, where he has been ever since.  He slept for several hours and then woke up long enough to eat a little lunch and help Mason put together a lego set.  Then, he went back to sleep and still is.  I am so frustrated.  It seems like something must be going on because he stopped chemo and has gotten worse instead of better.  The facial drooping and speech problems bother me too.  I know the speech is a direct result of the facial droop, but what is causing that?  Last time it happened, the doctor said that Bell’s Palsy doesn’t usually come and go.  He saw a Neurologist a while back and they said everything seemed fine.  Right now, he is weaker than I have seen him in a long time and passes out very regularly.  I think I might take him to see his family doctor tomorrow.  My babysitters are out of town today. 

My extended family is getting together today in Burlington, NC.  I wish I could be there, but am very glad I didn’t try to go.  I had already decided to stay home.  Jeff has to work and I wasn’t comfortable leaving town with him feeling the way he has lately.  I also am very nervous about the concept of having my four boys in my grandmother’s home.  She has lots of breakable things and I know something would get broken.  They are also kind of a lot to deal with if you’re not used to it, especially the noise.  After Jeff’s fall this morning, it is a good thing I didn’t go.  The weather is also terrible, which I wouldn’t want to drive in.  I hope my family is having a good time together.  Hopefully one day I will be able to travel more again.  For now, I will watch Jeff sleep and try to get my house back in order.  If I don’t get the laundry caught up soon, we will all be wearing shorts.

Filed under:
Jeff's Story by Wendy