Holding Her Own

Just a brief update. Jaimee is holding her own right now, has some good days and some bad days. But the bad days are never as bad as some (or all) of the previous bad days. Since there was no scan this week we don't know what Fred is doing. Hopefully he's realizing there is no love for him here and he's getting out of "town."

Is That a Light at the End of the Tunnel We See?

Jaimee got the results of yesterday's brain scan and there is some light at the end of the tunnel...we think. It seems that the doctor says Fred has been significantly affected by the treatments (altho from looking at the scans Jaimee can't see much difference). So the doctor is happy with cutting the antibiotics down to one kind instead of the 3 kinds she's been on. This should help with the side effects she's been having, hopefully her body will tolerate it better. She also gets to cut down on the prednisone some, but still takes the rest of the meds.

Another piece of good news is she doesn't have to have a brain scan next Monday. Since she has to pay $350 out of pocket each Monday, it has been a problem. But at least she won't have to have one next week. If she goes two weeks without a seizure or any other Fred-related problem, they'll re-evaluate everything.

Dare we hope this could continue to improve? She will have to stay on antibiotics for at least some months, but if the dosage is a tolerable level she shouldn't have any side effects. And if Fred is slowly disappearing, it seems he'll drop dead at some point (hopefully in the not-too-distant future).

A Diffiult Week

This is Ann reporting in. If you've been checking the blog in the last week, you may have thought things are going well. When we left it over a week ago, Jaimee was taking oral antibiotics, and had done well for the first couple of days. The primary bloggers (Mike and Kenna) have apparently been busy and not able to update the blog. I asked for permission to add to the blog and get everyone up to date.

The good news of a week ago Thursday, didn't even last through the day. I noticed into by the end of the day Thursday, that Jaimee was starting to have stomach problems. She is and always has been a trouper, and continued throughout Thursday to try and ignore the pain. By Friday, she was laying down more often than she was up and about, as the pain had increasingly worsened with each day. Jaimee's not a person who likes to lay down. It was clear to me that the pain was getting pretty bad.

On Saturday, she was supposed to work a 10 hour shift. She was feeling terrible, but persisted in heading out to work. She was suffering a killer headache on top of the pain from the strong dosage of oral antibiotics. On the way to work, she ended up throwing up all over herself. thereby losing all of her medicines in that manner. She had to turn around and come back home, spending the rest of the day basically in bed.

It only got worse from there. Among the medicines she threw up was her seizure medicine. That ended up causing problems for her. All of a sudden, about mid-afternoon; she was wobbly and unable to walk. Her mother and I were trying to help her move from one location to another in the house; using her office secretary chair to wheel her, as a "pretend" wheelchair. It was difficult moving her from the "pretend" wheelchair to the couch. Jaimee is strong stuff. Through all these months, the two rounds of chemo, pain, and everything she's been though, I've NEVER seen her cry. As she collapsed in an awkward angled position on the couch, not yet able to put her body into a position of either sitting or laying down; I saw the tears come. It did truly break my heart. I know she had to be scared and literally at her rope's end. When I told her later that this was the first time I have seen her cry through this long ordeal, she stated that she is usually able to hold the tears until she's alone. I hurt for her in those lone times.

Anyhow, during this time that she was struggling and we were trying to help her move, she kept saying, "My tongue feels like it's too big for my mouth." I couldn't figure why she was all of a sudden so unable to move her body or function. Nor did I have a clue why the issues with her tongue. We found out much later, that she had probably had a petite mal seizure. There were several other symptoms that I can't remember, going on along with the inability to move her own body in a normal manner, and the feeling of a swollen tongue. As she named them off to her doctor at her next appointment, he said they fit with having had a seizure. That definitely wasn't something she needed on top of everything else that day.

At the beginning of the work week, she had what by now is a weekly CT scan. The doctor found the abscess has shrunk some but not near enough. She needed a lot more of the high dosages of antibiotics fed into her system somehow. Her veins blow and it's not successful to put the medicine in by IV anymore. The decision was made to put a PICC line in. This is something that Jaimee has fought against since it was first suggested.

A PICC line is where they put a tube into your vein, and shove it all the way up your arm, through your shoulder, then angled into an area in your chest. The tube is left there, and medicine can be fed into the body that way. Picc lines, for those that don't know; have been used to feed people who are unable to eat by mouth for whatever reason. Wednesday morning Jaimee had a 7:45 a.m appointment at the hospital. They took her to a surgical suite and snaked the tubes through her veins into her chest all the while she was awake and had no pain killer. The only thing they did is numb her arm, where the tube went in. This was a very traumatic procedure she had to endure. She went through it alone, and had to stay at the hospital for tests and ultrasounds and everything else the doctor required for the entire day. She didn't get home until around 6:00 p.m. from all this trauma and ordeal. I didn't know she was getting a Picc line until it was all over. Once I realized how traumatic this is; I feel really bad that she had to endure it alone without any of us there to help "hold her hand" through this.

Ever since they put the Picc line in, the arm had been burning and hurting. When she lifted her baby up; it's very painful and difficult. Friday morning, she woke up with her hand (on the arm with the picc line) swollen and white, and with some numbness. In addition to that, there was a lot more burning happening and even more pain in her arm. In addition to the pain and burning in her arm, there was also now pain in the shoulder. There was discomfort in the shoulder previously, but then it became painful. She called her doctor. They told her to rush in right then. They did an ultrasound and found that the pain in the shoulder was where the line was crossing over a nerve. On top of that, they saw a blood clot was forming there. They stopped immediately what they were doing. They had to pull the Picc line out. It's upsetting that she went though all that trauma to get the line put in; to only have to pull it out without getting the benefit of all this. Once again, fully awake, she had to endure the this procedure without benefit of some type of deadening agent/anesthesia/pain killers or something!

So here we are again. We need those antibiotics fed in. It's imperative she get them. IVs aren't working for her, the Picc had to be pulled. She's going to try once again to take them orally. From what happened the last time she tried, I don't think that's going to last more than a couple of days, before she's in bed with abdominal pain again. With all the pain Fred's presence in her head causes, she doesn't need more! Where we are going from here, or what happens next; I have no idea. Please everyone join with me in telling Fred, the unlovely abscess to PLEASE drop dead and leave Jaimee alone. Tonight as she as she snuggled with her daughter (picture above) she said, "THIS is the best medicine I could ever have". Wish we could bottle some of that and eliminate Fred once and for all!

So Far So Good....

Jaimee has been able to tolerate the oral doses of medicines the doctor has put her on. It hasn't been a pleasant experience, but I think she would say it isn't as bad as the chemo was. She says no matter what, as long as she doesn't throw the meds up, she's staying on them at least until next Monday when the next brain scan is. (If anyone could stay on them, it would be Jaimee. She really is tough...not that she feels good but she just braves her way through it.) If Fred cooperates, she can go on lower doses of meds. If not, hopefully if she does have to have a PICC line her "go to" vein will have recovered enough that they'll be able to find it for the line.

Bad Veins, Brain Scans & Fred

Yesterday Jaimee had her weekly brain scan, which turned out to be a horrible experience.

When they do her scans, they have to inject this dye into her veins. Well, Jaimee's veins are bad to begin with, and they are weakened from all the medication she has been on. It was getting close to the end of the scan and Jaimee's vein blew. She told the nurse but by the time they could have gotten in there to take the IV out, the scan would have been over. So she laid there in extreme pain waiting for this thing to finish injecting all the dye into her arm. Jaimee says on a scale of 1-10, the pain was about a 9. It take a few days for the medicine to get out of her arm, so her arm has been hurting a lot.

Anyway, the results of this week's brain scan are still positive. The antibiotics are having an effect on the abscess, so the plan is to continue the antibiotics. The doctor wanted to put a PICC line in, but with Jaimee's veins so bad, she is afraid they wouldn't even be able to get it in. So we are going to try oral antibiotics. There are 3 different kinds of heavy antibiotics in addition to all the other medications she is on.

The doctor is concerned that they will hurt her stomach and she won't be able to keep them down. If that happens, they will go with the PICC line. If she is able to keep them down, her next brain scan will be in 7-10 days.

By the way, the abscess will now be known as Fred. Thanks to Ann for suggesting the name. So we want Fred to drop dead!!!

Name That Abscess

Jaimee finally got the results back from her brain scan on Monday. The abscess shrunk somewhat but not as much as the doctor wanted. She also was not able to keep anything down for a day or two, so he wants Jaimee to stay on the IV antibiotics for several more days.

Also, he set it up that she could get home health to come and administer the drugs and monitor her at home. She was starting to stress out about having someone watch the kids and someone else drive her to the infusion (or whatever you call it). It took about 3 hours between getting there, them finding a vein that didn't blow, and getting home. This way it takes 1-1/2 hrs. at home.

This post is from Kenna as Mike has had a really busy week. I welcome him updating this blog as he says it all so well. Sometimes I tend to get emotional and end up saying too much or too little. But Jaimee is starting to get on her feet from the illness this week. She has another scan on Monday to see what the lovely abscess is doing.

I think we should name it. What do you all think?

Really sick but no news yet

It's Tuesday, and Jaimee is really sick today. We are thinking she caught the bug that a few members of the family had over the weekend. So we don't think today's illness has anything to do with her abscess. Except for one thing: antibiotics wreak havoc with your stomach, and she has been on so much lately, so it is making her especially uncomfortable.

She is miserable today. Her head hurts really bad, and she can't take her usual pain medication because she is on so much medication already, the doctor doesn't want to add to it. Right now Jaimee is on antibiotics, steroids, anti-seizure medicine, and blood thinners. She also can't keep any food down today. She is trying to take sips of water and gatorade to prevent getting dehydrated. This morning she tried for 45 minutes to get ready and go to work. Obviously she didn't make it.

She had a brain scan yesterday and we are still waiting to hear the results of that. She talked to the doctor's nurse earlier to let them know what was going on. She is hoping the doctor will give her the results over the phone, since she is so sick there is no way she can go in to the doctor today. If they need to do any medical treatments today, we are hoping they can send a nurse here to the house.

It's not all bad right now. One good thing is her work has been very understanding of her condition. She is lucky that she doesn't have to worry about her job. She has enough stress as it is.