Let's Help Jeff

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.”

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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.

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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.

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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.

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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.

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Jeff's Story by Wendy

This has been kind of a tough week for Jeff.   He has passed out repeatedly and feels pretty bad if he does anything more that sit on the couch.  Today, he tried to go out on his own to do a little last minute shopping for me.  He passed out in Kohl’s and we had to go get him.  He wasn’t able to get what he went out for, but most importantly he is OK.  I wish he had gotten someone to take him earlier.  He thought he could make it today, but it was just too much for him.  We opened gifts with the boys tonight and watched them light up when they gave gifts to each other.  They really were cute, hugging and saying, “This is exactly what I wanted!”  I know Jeff was disappointed to not get what he wanted for me, but the whole situation just reminds me of one thing.  The best gift I have been given this Christmas is my husband.  I can’t imagine spending Christmas or any other day without Jeff.  He has been my best friend for over 16 years now.  There is nothing more important than being with the ones you love on Christmas!  I can’t wait to see the look on our boys’ faces in the morning.  Christmas is so magical with children!

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Jeff's Story by Wendy

This past Sunday, Jeff got to drop the ceremonial first puck at the Charlotte Checkers hockey game.  It was pretty fun.  We took Aaron and Mason with us.  They each got to drop a puck too.  I watched them on the big screen.  It was pretty cool, in more ways than one.  We are from the south, and don’t go to many hockey games.  We didn’t know it was going to be cold inside.  I guess it makes sense, but never the less, we froze our butts off.

Jeff’s back pain has been pretty constant, so just to see if it would help the Oncologist suggested skipping chemo for a month.  I was pretty happy with that, especially since it is December.  We were hoping that would mean that he would be feeling better during Christmas.  It has helped with the back pain, but has not helped with the weakness and dizziness.  The past few days have been especially bad.  Yesterday, he passed out as soon as he got up to go work.  He smashed his face on the wall when he fell.  He ended up having to call in to work.  He got back in bed and didn’t get back up again until 10:50 when he had to go to the bathroom.  He passed out again immediately when he tried to  walk.  I tried to get him to go to the doctor, but the doctor’s office wanted him to go to the ER since his face was drooping on the left side.  I couldn’t get in touch with my dad to babysit and Jeff didn’t want to pay $300 just to be told they couldn’t find anything wrong, so he just stayed home.  I had him go down the stairs sitting down.  He stayed on the couch all day, except to go to the bathroom and even that was difficult.  Sometimes, I had to help him walk back to the couch.  It is very frustrating because some days are so bad, you think something new has got to be wrong.  But, when we have all these expensive tests done, they always say everything is normal.  Today hasn’t been much better.  He came downstairs sitting down again and stumbled into the office, determined to work since he had to take yesterday off.  I have delivered his food, drinks, and medicine to him.  He is so weak, he can barely walk.  His parents and brother’s family are coming over today.  At least, that will keep his spirits up, I hope.

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Jeff's Story by Wendy

This past week we celebrated Thanksgiving at our house on Thursday with both sets of grandparents and then on Saturday with my side of the family which included 10 children ages 8 and under.  It was crazy and lots of fun.  Things are finally settling back down and we have started decorating for Christmas.  We put the tree up last night, but seem to have two strands of lights that are not working on our pre-lit tree.  The boys are already very excited about Christmas.  Jeff and I are doing most of shopping online this year since he cannot walk for long periods of time and I cannot find much time away from the kids.

Jeff has had his ups and downs lately.  He still struggles with the pain in his back, chest, hips, and femurs most days.  Some days it is tollerable and other days requires Morphine, which really only takes the edge off the pain.  None of the tests have given us any real answers.  Because of the pain, Jeff is considering changing his chemo again.  If he doesn’t change or stop it, he will probably start seeing a pain specialist.  The passing out has become less frequent, though he did pass out just after our Thanksgiving feast with my family on Saturday, falling most of the way down the stairs.  After that, I had him crawl upstairs and go to bed, where he stayed for 2-3 hours before I woke him to come back and visit with everyone before they had to leave.  If I remember correctly, next week starts the second of the two years that he is supposed to get the maintenance chemo.  His blood counts continue to be pretty good all things considered.  So far, he hasn’t been sick too much since the kids started back to school.  That is a blessing in itself.  One day, we hope our lives will get back to normal, but for now we are thankful for the good days and do our best to get through the bad ones.

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Jeff's Story by Wendy

Jeff has had less back pain today and has been getting around better.  He worked his full six hours two days in a row.  We were actually getting hopeful that he would be able to go camping with Aaron and Mason this week-end as planned with the Cub Scouts.  We are not so sure right now.  This afternoon, he tried to walk upstairs to change into long pants because it was getting cold out and he was planning to take Aaron to football practice.  He passed out and fell back down the stairs again.  We aren’t sure how it happened exactly, but this time he came down on his back.  He slid on his back all the way to the bottome.  Now, his back is in a lot of pain again, but this time it is from the fall, not the bone pain.  He also has some pretty bad pain in his left hip.  He is getting around OK, so I am hoping it won’t stop him from going with the boys on Saturday.  He finally got a call today about scheduling the MRI of his back.  It will be done on Sunday afternoon.  I’m not sure how long it will take to get the results.  I really hope that he can go this week-end, and I promise it’s not just because I don’t want to go camping!

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Jeff's Story by Wendy

Jeff got his chemo as scheduled this afternoon.  His blood counts were pretty good, but they did show that his body was stressed.  His blood pressure and heart rate were both up, most likely as a result of the pain.  They gave him a prescription for morphine, since that is about the only pain medication he is not allergic to.  I really hope it works.  The Oncologist said he did not think it was the Leukemia causing the pain, since the blood counts were good.  We asked about doing another bone marrow biopsy, but he did not think it was necessary at this time.  He recommended an MRI on Jeff’s lower back and pelvis, so they are setting that up for us.  I was relieved that he also said that if there was a problem with the bone marrow, it should show up on the MRI.  That way they would know they needed to do the bone marrow biopsy.  So…. no answers yet, but medication for the pain and another expensive test to try to find some answers.  At least it’s not more cancer!

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Jeff's Story by Wendy