3 month follow up

Jeff has been sick since Sept 9. Has been to the doctor 2 times but just can't shake this cold. Had some antibiotics but they didn't really touch it. Chest x-ray came back okay (at least I assume so, they never called and they don't for normal results, only if something is wrong.)

Yesterday he had a visit with the oncologist- just a normal 3 month post chemo follow up. All his normal labs came back okay. Dr. H said that he was going to do some immonoglobulin testing just to make sure.

The nurse called with results today. There were three tests.
IgA Normal is 70-400. He was 39.
IgM normal 40-230 him-1 (no, I did not miss a number, that is supposed to be one.)
IgG- normal 700 him-315

Those were NOT the results we were hoping for BUT do explain why his immune system has not been able to fight this cold. He will go in on Nov 4 for some IVIG (immunoglobulins to help boost his immune system) and will have every 4 weeks. I'm not sure for how long.

Now, if I can just figure out why Ryan has also been sick for 7 weeks and unable to shake and stay rid of his stuff. With his ear infection, we are starting the z-pack even though the doctor wants us to wait a couple days and see if it gets better on its own. He is a 13 year old boy and should NOT be sitting on the couch wrapped in blankets every night because he is freezing and feeling like a truck ran over him.

Any prayers are appreciated.

Thank you

Wow, haven't had to post here in a long time. Don't get me wrong, that is a GREAT feeling!

I really don't have anything to report on Jeff  either. This is another "for me" post.

During the summer I have talked to some people I either haven't seen in a long time or people that I didn't even know. Why? They were telling me how they are following this blog because someone they know had pointed them in this direction because they either knew Jeff or had heard of him or heard about our battle and had gone though CLL with a family member or a number of other reasons. The number of followers as astonished me.

 The other thing that has amazed me is the number of people who have told me how much they enjoy the blog and the way I write it. Tears. Every. Time.

I'm not doing anything special. Just writing.

Thank you.

I admit, it makes me feel good to know that I am sharing in a way that people enjoy. [okay, not that they enjoy having to read about this horrible, life changing disease, but you know what I mean. :) ]  Sometimes a little feel good for me is a good thing too, right?

So, for those of you that have told me how the stories or the writing or the battle or whatever has been touching you, Thank You for touching me. I don't wish the battle with cancer on anyone, anywhere (well, maybe that person who cut me off the other day......okay, not really). Friends like the ones I have sure help to make the sunshine a little brighter.

On another note, I just found another friend from school whose family is joining in the battle. Please add an extra little prayer for them too.

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.

Only one more to go!!

Yep, only one more round of treatment to go. Can't wait until it is over! This seems like such a long drawn out thing. Guess it is since it is over 6 months for treatment. Sorry  I didn't get this out as soon as treatment started. Not sure what I did but something flew into my wrist and I've only been able to hunt and peck. An update was just too hard that way.  I'm loaded up on Motrin and wearing my carpal tunnel brace (although I'm pretty sure it isn't CT related) so I can at least type now!

We started treatment Tuesday May 31. Treatment days went well. No problems getting through treatment. The doctor is pleased with the progress Jeff has made. He hinted at some maintenance doses of the one med to help maintain remission, but said we'd talk about it after we finish the last round. So, we'll deal with that later.

On Saturday May 28 Jeff started with a bad headache. He NEVER has a headache (so unfair!) so when he still had it by the time we went in for treatment on Tuesday we mentioned it to the doctor. He didn't feel it was treatment related but since it had been that long and was still severe, he ordered an MRI. He had that on Thursday after treatment. Of course, by Saturday or Sunday the headache was much better. MRI results showed nothing significant.

We had trouble getting the MRI scheduled and when I mentioned how long treatment takes because of the pre-hydration, they told me that this far into treatment he may not need that extra liter of fluid before he starts the Treanda. It sure felt weird to get out of there as early as we did on Wednesday and Tuesday!

But, I think we ended up doing the wrong thing by not getting that extra fluid. Jeff was feeling pretty good on Friday so we got stuff ready for the community yard sale on Saturday. (Because of treatment and a baseball game for Clinton we weren't sure we would be able to pull it off so we weren't as ready as we should have been.) Yard sale went well and he was still feeling okay.

Late Sunday night he started to get his "chemo hangover." He came home from work early on Monday and laid down right away. He got up to get ready for work on Tuesday and ended up calling in. He spent all day yesterday either on the couch or on the lounge chair outside. I'm not sure if it is really helping or not, but I have him taking the stronger nausea med and also more Tylenol then he is really allowed to take. He is also sitting with ice on his head hoping it helps.  He does seem some better this morning. I do think we  are going to request the fluid back for that last cycle. I know that it won't hurt and it just might help. This just is not like Jeff to sit around. Extra prayers to get over this hard "hangover" are appreciated along with some for a smoother time next time.   Recovery after the 4th round went so well and he felt so wonderful that this one is just hard to take.

Jeff joked this morning that he feels like he is getting bed sores. I've never seen him down with anything for this long. We are almost at 48 hours. I don't think he was down this long when he cracked his vertebra and wrist in '98.  I knew there was a reason I told him months ago not to even THINK about joining in the station run this weekend.

Thank you all for your support and prayers. Sorry I didn't get this out like I should have.

Round 4 finished

Well, here we are on the downward slide of these treatments. Just finished round 4. Only 2 more to go. YEAH!!!

The week before we started this round, Jeff had a CT scan. The scan was from nose to knees. We got the results back when we saw the doctor on Monday. NO ABNORMAL LYMPH CELLS! Praise God! We were hoping for similar news and would have been crushed if not. So, for now, we continue and finish this group of drugs. Kind of like finishing all your antibiotics for bronchitis- you have to finish to get the whole desired effect. Blood results all came back fine too. Luckily this has not been a problem for Jeff at all.  Jeff joked with the doctor and asked if he wasn't going to feel his neck this time. Doc just laughed and said there was no reason. He couldn't feel any thing  at all the last time and the CT scan shows nothing there.

So, back out to the treatment room for things to get started. This time we have made it through with no effects. The benadryl  didn't even seem to knock him out like it has in the past. Although he did sleep a lot this afternoon after we got home. I like the uneventful treatment cycles. I got to sit and work on some Christmas gifts this week. Now I'm trying to decide what next  cycle will bring. It will probably be a good time to work on something for the band's Chinese auction in September. I just need to come up with a project...... I really don't know why I'm not taking advantage of the time where I can just sit and read and not get in trouble for it. :o)

Jeff's biggest complaint is that things don't taste right. Sometimes I have to wonder about the food in front of me. He is always asking "how does that taste?" or "Does that taste okay to you?" Usually things are fine. Just his taste not working right. The lady in the chair across  from his yesterday said things didn't taste right for her the night before but that day things were tasting good so she was eating while she could enjoy it.  It is kind of weird because things tasted okay for Jeff last night and today too. I'm sure it will be disappearing though. :-(

The news is kind of bland this time other than the CT results. But, that is the way I like it. No news means good treatment which in turn means no stress for me! And THAT is always a good thing!

Finally-update on round 3

Sorry this update is so late. Last week was a busy week. I was working on the talent show at the elementary school- production was last Friday night. Between it and whatever else, I just never got this note written.

 

First, everyone remained healthy so we got through treatments without any problems with the kids or I getting sick. Thanks for the prayers.

 

Jeff did well with the treatments. Monday was wonderful. No problems at all. Tuesday night was a different story. Because of one thing or another we had a late supper that night. By the time I had it ready and we sat down to eat, Jeff was starting to complain of being cold. I took his temperature which was up a bit to 99.8 (he is consistantly 98.3-98.5). Told him we'd watch it ect. Within a few minutes he was so cold he couldn't stand it. Was in his winter coat, back onto the couch and covered in 6 or 7 blankets.  By the time I was able to slowly peel blankets off of him, and let him in room temp air for 20 minutes or so, his temp was up to 101.9. I called the doctor who said he could take tylenol and I should just watch him for a bit.  The tylenol helped the fever to break and by the time we got into bed, he was having no problems. I did the "mom" check of the temp through the night and he felt fine. The doctor saw him for a few minutes before treatment. Treatment went as scheduled.

 

Jeff had no problems the rest of the week/weekend. As a matter of fact, at one point he said that he was feeling the best he has since he started treatment. Of course, by Monday, he was pretty tired. He's feeling wiped out this week but has not had a rash or any other problems so far this week.

 

He had an apt today. Things are looking good. no problems at all with his blood work or physical exam. The doctor is very pleased. Because we are through 3 of the 6 cycles, Jeff will have a CT scan at some point before his next round of chemo (scheduled May 2) just to make sure the meds are working as they are supposed to- the doctor really has no reason to think it isn't since you can see the change in his neck and he can no longer feel anything in his neck on physical exam.

 

So, all in all, things are going well. Only the episode of freezing on Tuesday night this time. The prayers are working!

ready to start another round

Well, here we go again. Monday starts round 3 of chemo.

 

I'm asking for some prayers this time through.

 

Some of the kids have had colds ect. Please pray Jeff and I don't get one. They (obviously) don't want us there if we are sick.

 

Also, I add that none of the kids get any worse. Matthew seems pretty good today but got up on Friday and had that 'barking' cough kids sometimes get.  By 900 it is usally gone. I didn't hear it at all today.

 

Thirdly, for Jeff that this treatment goes well.  Before his follow up apt last cycle he started with a rash. Looked like a drug reaction to me, I called to let them know and then started giving him some benedryl. Of course, the one time I'd like to be wrong, I'm not. The doctor put him on some prednisone and the rash healed and all went well. The problem is that he is on 2 diffent chemo drugs plus 5 or 6 pre-treatment drugs-most of which are new to him. So any one of them could be the one he is allergic to. We could scrap this treatment regime  but then we'd have to start totally over. The doctor has recommended we continue with what he is doing and hope that any future reactions remain mild.

 

Following this treatment sometime he will have a CT scan to see how things are going- at least that is what the doc told us when we went in at the start of cycle 2.

 

Thank you all.

another cycle finished

Done again for another few weeks

This cycle went pretty good. We headed to Meadville on Monday not sure what to expect out of the days meds. Our regular nurse was pulled back into the doctor's area because one of the nurses back there is off on maternity leave. We had someone we hadn't seen before. Jeff said she did good with the stick though because he didn't even know she got the line in him.  The day went very well. He had no reaction this time so we were done slightly over an hour ealier than last time! WHOO HOO. It is the little things!

M was still in the back Tuesday and Wednesday so we had S for a nurse. She got Jeff all set up and ready for the day on Tuesday. The chair opposite him was empty but filled very quickly. (until about noon, the chairs are usually all filled. At that point it starts to thin out, but there is a second "wave" of patients that come in  during the afternoon for their nulesta shots or other treatments.) The guy in the chair that day was a TALKER. And I mean he talked from the time he got there and got set up at 930 until he left at 130! He blamed it on the steriod making him that way. Not sure if that was the reason or if it is just his personality, but he sure kept us entertained. Some days the person in the chair opposite is very quiet. Most of the patients get IV Benedryl prior to the start of the actual chemo. That will often put them to sleep. It usually does Jeff.

Jeff's drug on Tuesday and Wednesday only runs over an hour. BUT, he has lots to do before he gets the actual chemo. He starts with a liter of fluid which has to run in over 2 hours. Then he gets 4 or 5 other meds - a couple are IV push, others have to run over 30 minutes. ANd of course, there is about 15 minutes of fluid in between each one. He finally gets the chemo around 115 on Tuesday and 1230 on Wednesday.

He hasn't had any problems so far this treatment. No 'chemo hangover' like he had last time (it started on Thursday AM last time) or nausea at this point. some of the drugs they give before the chemo are anti-nausea drugs and supposedly last a few days. He did take a pill with him to work today just in case he starts to feel queasy.

So, treatment is over, things went well during and seem good so far after.

Chemo treatment room

I'm finding myself talking to people and saying about "the patient in the other chair." so, here is some backround on the set up of the chemo area at YGBOC.

There are 12 chemo (reclining) chairs with  a companion chair beside it. Chair one sits and faces chair 2 (slightly angled facing out toward the nurses station on the opposite wall). Chair 2 and chair 3 have their backs together. Chair 3 and 4 face each other and so on down the line.  There is enough room between 1 and 2 for 2 IV pumps and a blood pressure machine. The chairs are also lined up against the outside wall which is all windows allowing you to watch the birdfeeders and the squirrels that are fat enough to look like groundhogs!  There are also two treatment rooms on one end allowing someone who needs to be alone to be in one of those rooms. Or when there are too many patients for those 12 chairs.  At the other end of the room, there is a small lounge with 2 chairs (also called into service on a very busy day) a dorm size refrigerator, a coffee pot with always fresh coffee and  a hot water spigot and a basket of snacks. There is also a shelf with different cans of soup if you want some of that for lunch while you are there. The wall opposite the chairs is the nurses station. Each nurse has her own "area" and computer on a long desk (runs the entire length of the room) looking out at the patients.

There are probably about 6 or 8 nurses back in the chemo area. Your nurse comes out to the waiting room to get you and takes you back, gets you started for the day and is your primary nurse. BUT, they all work so well together. If your machine beeps that it is time for the next drug or time to flush in between, who ever gets there first usually takes care of the "problem."

There is an art director that is in and out too. He does a lot of visiting with patients but also provides some activities depending on the day.  There is always at least one volunteer there walking around with the basket of snacks, asking if you would like something to eat,or if you need anything.

The set up is very nice and the people are wonderful.

Easy Week

Jeff was still feeling a little foggy when we left the doctor last Tuesday. By Wednesday he was feeling better.  By the weekend he told me he felt pretty much normal. That was more than we could hope for because the doctor told him to expect about a 5% decrease from feeling his best between each treatment. He said he would probably only get to feeling about 95% before he started his next treatment. Then following that one, probably only about 90% of his normal until he started the next set.  I am pleasantly suprised that Jeff is feeling normal.

 

I'm not sure if I've ever said here or not. Jeff's treatment schedule is every 28 days. He will have 3 days of chemo then 25 days "off" before he starts the cycle again. He will do this for a total of 6 treatments.

 

His next set of treatments will start on March 7. He will get treatment the 7, 8, and 9 then start the days of no treatment.  As long as his blood counts stay high enough and nothing goes wrong, his last treatment will fall the last week in June.

 

I think the best thing right now is no trips to any doctors for 2.5 weeks. We haven't gone that long since his first surgery on Dec 2 without seeing a doctor of some kind. I could get used to this! Of course, I'm sure one of the kids will get sick so that I have to eat those words, but for now, there is nothing on my calander and I like that!

 

 

Post chemo doctor visit

Jeff had a post chemo doctor visit on Tuesday (I know, I'm being horrible at keeping everyone up to date. I'm sorry.)

 

For this visit, we have to arrive an hour early, he has blood drawn and then we wait while they do the  blood work. Doctor's apt is scheduled for 1 hour after blood draw is scheduled. The blood work all came back ok.

 

When the doctor looked at Jeff he was really suprised. He said he could tell just by looking at him that the chemo was working already. The nodes in his neck are not as visible as they were before! When he felt them, he was even more impressed by what he did and did not feel. He was very impressed by the progress already and said that while he expected good results, he honestly did not expect them this early.  He was pleased Jeff only had minor stomach discomfort and was glad he was taking the one med for that.

 

Saturday and Sunday were probably the roughest days for Jeff. He said he just didn't feel right and felt crappy. Once he had a few of the compazine in his system, he started feeling better. He didn't take any after 1pm on Monday and has been fine since. At least as far as that.

 

Jeff was somewhat disappointed there is nothing to help his main complaint. He said he felt "fuzzy" and "cloudy in the head. The doctor reassured him during the apt at noon that it was very normal to feel that way and that he was sure the feeling would soon go away. By Tuesday night it was gone! Jeff has said he feels pretty much normal since that time.

 

Because his blood work is fine and all else seems okay at this point, we don't have to do anything else until he goes back for his next round of chemo on March 7.  This will be the longest time frame without a trip to Titusville or Meadville (mostly Meadville) since we got the diagnosis.  We plan to enjoy it!

Love the Center

Okay, that title probably sounds way off. And if I'm honest with myself and the rest of you, I hate that we have to be there.

But the center is set up so nice. Everyone is so friendly.

And our nurse just called again to make sure the shot went okay yesterday and that Jeff is feeling okay. Also to reassure that if we have any problems over the weekend, there is a doctor on call- and lucky for us this weekend it is Jeff's doctor.

It is amazing what one phone call saying 'just checking he's okay today' from the staff can do.

Finally an update

I guess I should have written last week. I just didn't get it done. Of course, there really wasn't much to share anyway!

 

Jeff and I drove to Meadville last Tuesday morning in the horrible snow- using his car to plow a path- to get to the hospital. They put a Power Port in his chest. Surgery went well with no complications. So far, everything is looking good there. Our main gripe was having to be there at 545am (yes, you read that right! I don't do that time of the day very well!) To make matters worse, he didn't go to surgery until almost 930! He was back in his curtian, awake and drinking coffee by 1015.

 

Later after we got home, his nurse from the oncology center called and told me that she had talked to his doctor and her nurse manager. She was about to call our pharmacy and check on the one drug. It was probably about 20 minutes later (if that long) until she called back and told me that the doctor has agreed, the pharmacy can get, insurance will pay for, and I can give his Neulasta! One less trip to Meadville! I'm not sure Jeff is thrilled that I'll be giving him his shot, but it will save him 2 hours! (we figure the cost for our copay is approximately what we would pay in gas to drive over there.) I honestly was not expecting that!  How nice of M to remember I mentioned during her teaching that it was a shame I couldn't give it to him since I was an RN. Then to go to the trouble of finding out and calling us to tell us. It just struck me as kind of above and beyond what needed to be done.

 

There, now you are caught up. HA HA HA!

 

WEDNESDAY--

 

Okay, thought I'd do a better job  but I didn't follow through.

 

Monday we arrived for chemo at 900 and didn't leave until 430. That was a LLLOOOOONNNGGG day.  The drug needs to be started slowly and if you tolerate it, it is increased each half an hour. Jeff did good until the end of the first hour and a half. Then he started feeling cool. By the time he went to the bathroom and came back (they pump A LOT of fluid in with his drugs!) he was starting to shiver. So, the meds needed stopped, he got some demerol and after 30 minutes they restarted the drip. That time he was able to keep going and finish the drug.

 

Tuesday we went over at 900 and left around 230. We had the nurse that is to be his normal nurse that day (she had to help in another area on Monday.) Before he can even start that drug, they have to give him a full liter of fluid over 2 hours. Then there is about 5 pre-chemo drgus he has to get including benadryl, zantac and a steriod plus two to prevent nausea. Fianlly he can start the chemo drug itself. It takes an hour (another 570 ml.) He had no problems with anything on Tuesday.

 

Today was the same as yesterday. the only difference is that he doesn't have to get the two drugs for the nausea since they are supposed to last for 3 and 5 days. That means that on Wednesday we get out around 130!  Still a long day. But we stopped at Cracker Barrel on the way home- I'm still stuffed.

 

Everyone is SO nice. Each patient is assigned a nurse but the others are right there. There are about 6 of them I think. They all jump in and do what needs done when a pump goes off. And man, there are pumps going off all the time because someone  is finishing some part of treatment all the time. 

 

There are 12 chemo chairs and 2 private treatment rooms. Today there was some trouble with the labs not coming back very fast which put some patients treatments later. So, new patients were coming in before the first ones were done. There is an extra sitting area in the back that had a patient in it and one in one of the private areas.  Lots and lots of different patients in and of course, as soon as one left, a new one was in that chair.

 

There is a small kitchen type area with snack foods for the patients - coffee, tea, juices, chips, pretzles, cookies, danishes. When volunteers are in, they walk through with snacks every so often. The nurses also do it when they have time. Or, I am free to go back and get something for Jeff and I whenever we want/need something.

 

So, Jeff gets to sit in his little recliner and make me serve him. Hope he didn't get used to it, because it won't happen at home! LOL!

 

Other than that reaction to the first med (which is very common and the reason it takes so long to give), Jeff has felt fine. He did have some heartburn last night and they wrote for another perscription. He's already throwing a fit about the increase in pills, but at least most of them are temporary.  Poor guy was taking nothing then 6 months ago starts taking something for his blood pressure and now he's up to 4 he will take regularly throughout this chemo cycle with 2-4 more a day on Tuesday - Thursday of treatment days. Plus the two he can take for nausea if he needs. So far so good on that on.

 

There is an "art director" that comes in with activities to do. yesterday he had stuff there for people to paint. Today he had a table set up for people to get things to make bracelets or necklaces.  I have taken my crocheting along. I have a couple of projects started that I'll get to finish during all this I guess. G (the art director) sets up artwork done by the patients and families. There are some quilts hanging above the nurses station. Someone just took a bunch of bears in that they made and he has them sitting in an area in the lobby. He asked for the afaghan I'm doing now. Not sure if I'll let them show it or not. 

 

There is a nurse that walks through periodically (not sure what or who she is-not a chemo nurse) that saw me crocheting and mentioned that she has asked people to crochet prayer shawls for the center. I want to finish this afaghan I'm doing and would really like to finish one I started for myself a few years ago. After that I plan to use the time to do prayer shawls while I sit there. Or maybe I'll do the prayer shawls and try to work on the valentine one at home. Or mix it up a little. Not sure.  I had looked at a book online one time for hats. Thought about sitting and doing some of them, but I saw a bunch of chemo hats in a box a the center. Prayer shawls would probably be easier anyway!  I'm just hoping all the crocheting doesn't cause my carpal tunnel to flare. I really need to get a brace for while I'm crocheting. So far I feel good though.

 

I guess that is all for now.

 

Jeff is feeling good tonight so I asked him to take the boys into scouts. I have run Clinton into town for pepband and baseball the past two nights after being with him all day. I needed to stay home. Of course, I should be using the time to do the dishes and everything else that has not gotten done the past 3 days.  Other than homework with the kids and making supper, I have literally done nothing here at home. Then again, after doing valentines with Faith and Matthew tonight, I feel like I've done TONS!

 

Thanks all for the continued prayers.

port insertion

Port insertion is tomorrow morning. We need to be in Meadville at 545. INSANE!

May need a new doctor

While we were talking to Dr. H this afternoon Jeff mentioned that his treatments will start the day after the Steelers win the SuperBowl. Dr. H answered only that it was the day after the big game. So Jeff asked if he followed the Steelers. He said no.  He is a Giants fan. I told him we needed a new doctor. He laughed at me and walked away.

Friday = chemo teaching

Well, I'm not sure how much of the chemo teaching  was new for me, but I guess most of it was for Jeff. He was able to see what his port will look like.  Not sure if that helped or hurt! LOL! He  had questions for me afterward and then said "the port is bigger than I thought it would be." Well, it was smaller than I thought, so together we averaged about right.

 

I started a "cancer book" for Jeff and I. A place to write all the info as we get it. A place for me to keep track of how treatments go (okay, that is the nurse in me making my own chart) and to record questions for the next time we go in. But I didn't really write a whole lot in it this time- we were given pamphlets.  This will also be a place where I can make sure I share all that  I have with all of you! :)

 

One of the main things we found out at the teaching today (other than seeing the port) is that instead of the 2 days we were told we'd have to have on Tuesday, we now have to have 3 days of treatment in a row. The nurse walked out for something and I told Jeff that pretty soon we'd be there for a full week. He just laughed at me and said something about it just being 3 days. Then the nurse walked in with our schedule for the first treatment. Sure enough, he has to go back on the 4th day for a shot! I just looked at him and raised my eyebrow!  It will only take a minute to do and I joked about being able to do it myself but I'm sure that won't be allowed to happen. (something about liablity and it having to stay there and be dispensed from their pharmacy, ect.)  So, we are now up to 4 days in a row to be there. At least the 4th will only take a few minutes in the office but it is still the Lloonngg drive over there. I'm just so thankful that we are not having to go to Pittsburgh!

 

We are checking into having his between treatment blood counts checked at a local hospital. We figured Titusville because it is our hospital. But I called out to UPMC today to see about them doing it there since it is roughly 2 miles from Jeff's work. The person I spoke to in the lab was very friendly and said that was no problem to do it there and fax the results. So, I went out on a limb and asked about doing it through a port. Her response- call our cancer center. I figured why not. I wish I had a name of the nurse I spoke to there. She was SO NICE! I'd send a little note out thanking her. Anyway, UMPC will cooperate fully on getting blood drawn and sending results to the Dr. whether through his anticub in the lab or through the port in the cancer center.

 

On the way out the door after a blood draw today, we saw Dr. H in the hallway. He stopped us to talk to us and make sure we had everything okay and understood the schedule. He also mentioned that he got the results back on the chromosome test and (not suprising to me) the results came back indicating a more aggressive cancer. He is very glad that we opted to start therapy now instead of wait. He also said that after we get through this round of treatment, he may consult with a CLL specialist. I'm afraid to know where we will have to go for that. Jeff said if this keeps up, we may  have to get a brand new car for all the running. (a two seat hybrid with wonderful milage mabye??)  Wow! That would be a big deal for us! But so not worth going through all of this just to get a new car!

 

Since we are home and Jeff went to work, I sat down with the list of new meds he will be starting and got it ready to send in with him for work. The state physician will need to know all of this info. We'll see what happens with any time on the road as soon as he starts this. I'm pretty sure that he'll be stuck on station until sometime in the fall! I'm hoping I'm wrong because he'll go absolutely crazy with that, but I'm trying to be realistic.

 

Just the thought of 13-16 hours over three days sitting in a chair getting his chemo is driving him crazy. I told him I'll have to teach him to crochet or he'll have to use Clinton's DS. Neither appealed to him. I, on the other hand, will have no trouble sitting by his side reading!  We may have to take some games or something.  Not the setting or situation I'd like but time alone without kids can't be too bad, can it?

 

Next we see the surgeon on Monday and have the port inserted on Tuesday. Treatment will then start on Monday Feb 7.  Now that I have that plugged into my calander, I can make all the other plans I need to make.

 

Okay, that is it for now.

 

Finally, well, not really, but almost

We are some what closer to a plan on what is going on with Jeff. Actually, I guess we have the start of a plan.

 

First, let me thank all of you for your concern,thoughts and prayers. You can't imagine how they help.

 

Second, I ask for forgiveness in advance because my thoughts are all scrambled and disjointed and may not make sense.

 

Today was the start of a busy week of doctor visits.

 

It seems like everytime we get more info about this disease and how it is affecting Jeff, it is not what I am hoping for. But, I know that we will make it through. How can we not with God holding us up along the way?

 

Most of the bone marrow results were back. I was really hoping that there would be no bone marrow involvement. However, following the pattern we established starting with surgery results, there is bone marrow involvement.  On the other hand, all his blood counts remain okay. So, kind of a mixed bag today.  Because of how advanced the disease it, the doctor thinks Jeff has probably had it for "years" but can not say exactly how long. There is no way to know.

 

Dr H told us that he recommends starting chemotherapy at this point.  The decision, of course, was Jeff's to make. He could get started now or he could wait and revisit in a few months or a year and see where he was- he could remain symptom free that long, or could start with symptoms within a month. There is no way to know. I think if there was a way to know that he would feel as good as he does now in a years time, Jeff would have prolonged the decision.

 

Dr H also mentioned that there are some features that are showing some aggression. (again, not something I really wanted to hear).  There was still one test that hadn't come back yet. If it would happen to come back positive it would indicate more aggression. Not sure how long until that comes back.  Jeff remained hesitant because he feels fine now and has no symptoms- but starting the chemotherapy is liable to change that. He doesn't like the idea of making himself sick when he feels so good.  But, we decided at this point to go ahead and start therapy right away.

 

I wish I had a dollar for the number of times today that I heard the words "healthy"  "have no symptoms" and  "Young".  "Because you are young and healthy and have no symptoms....." was the phrase of the day. It all boiled down to Dr. H saying that he thought we could get a good remission because of those million dollar phrases. Then one of the chemo nurses who came in used that same 'Because you are young and healthy, you  have a good chance of handling the chemo pretty well.'

 

The plan for now is 2 chemo drugs over 2 days given every 4 weeks for 6 cycles.

 

We will drive back to Meadville on Friday morning for some chemo teaching. I am hoping at that point that we will have a start date.  On Monday, the 31st, we will go back to Meadville and meet a surgeon so we can go back on Tuesday  (the van will soon know the way itself) and Jeff will have a port inserted. We decided that we would go with the doctor's recommendation for a port to save Jeff's veins from the harshness of the meds.

 

In between all THOSE visits, Clinton goes to the dentist for a cracked tooth and Matthew has to go to the doctor for a scratched eye that has gotten sore and most likely infected. I have a feeling I'll get some reading time in during this next week. I'm going to be doing enough sitting around in doctor's offices and waiting rooms!

 

Thanks again for the support.

Waiting

I've gotten emails and fb posts with questions on what is going on so thought I'd put it here too.

NOTHING! ARGH!!

Jeff did have the bone marrow biopsy a week ago today. He had no problems with it. He did say that the lidocaine was the worst- felt like getting pinched inside the skin. The rest he wasn't even away was happening.  I took the bandge off 24 hours later and the site was fine. I did take a picture of it for him to be able to see, but we decided no one else needed to see it and I immediately deleted it. :)

Now, we are doing like we have done since surgery on Dec 2. Just waiting for the next appointment. I am really hoping that by the end of the appointment next week, we have a plan in place. My kids need eye exams scheduled and I need a physical. I'm just not doing any scheduling or planning until I know what the plan/schedule/routine will be for THIS.

We know it is there and will affect us for the next 30 or 40 or 50 years. We just wanna get those years started.

Quiet week

For the first Thursday since the end of November we didn't have to go to a doctor's apt this week. It felt kind of weird.

This doctor's the right one - 12/30/10

I think we are finally seeing the doctor that will get us through this.

The kids had dentist apts today so we drove to Meadville straight from there with everyone tagging along. I probably would have opted to leave them at home (having a 15 year old is kind of nice! HA!!) but the timing was too close. And since I want to be involved in all that I can be, me taking the kids and Jeff going himself was not an option either.

I knew this appointment would be long. I packed a movie and the portable DVD player. The kids were lectured before we got to the office on how I expected them to behave-not that the behavior was any different from what I would expect otherwise. But, I wanted to make sure. I was pleasantly surprised when we finished the apt an hour and a half later by the number of people who stopped me to tell me how good the kids were. I was hoping for reports like that, but you can't really ask the staff because even if not good, they would probably stutter around and say that they were fine. But I got to walk out into the lobby and have the volunteer/greeter stop me and tell me they were so good he had to take a picture of them. An older lady also sitting in the waiting room like my kids, told me they were excellent.  That does a mom proud! And I made sure to tell them too!

Our visit with the doctor was a mixed bag. The not so great news is that the PET scan showed the lymph nodes are effected throughout his body, not just in the neck. The doctor said this could have been in his system for up to a year already because it is a very slow moving cancer. He has no other signs so if not for the start of high blood pressure who knows when we may have found out.  On the other hand, because it is so slow moving, we are not in immediate need to deal with this and the month we have been putting things off between this visit and the next, ect is not hurting him at all.

 

This is a cancer that usually affects older people. Avg age around 60. If this would be diagnosed in someone in their 80s, no treatment is usually given. However, since Jeff is relatively young (yes, that is a wifely crack since he just had his 50th birthday! LOL!) he will start treatment. We aren't sure exactly what drugs and what the time frames will be right now. He will go in on Jan 13 for a bone marrow biopsy. That will help them determine 1) whether this is more of a leukemia or more of a lymphoma [really makes no difference in the long run] and 2) exactly what chemo drugs and treatment plan will be used.

 

It looks like in general it will be something every 3 or 4 weeks  for 4-6 months. We will find out more specifics after the bone marrow biopsy. Those results will take at least a week to come back.  I'm hoping we know some specifics by the end of the month.

 

I will say that I was very impressed with the way the doctor has been in scheduling the bone marrow biopsy.  I asked him if Jeff would need to take that whole day off of work. He said that would be best and asked what day of that week would work for us. I told him that Jeff was 7-3 Monday- Wednesday but we could get him off if we had to. He then asked about Thursday and Friday. When I told him that Jeff was off those days, he didn't even look at the early part of the week. Just told us that since Jeff was off and it worked better for us, we'd do it on Thursday morning. The time however was pretty much set for 800. Now I just have to get my kids to school that day somehow- but that will be easy compared to the rest of this journey!

PET scan - 12/23/10

We packed up the kids and went to Meadville for the PET scan. Jeff has been fasting since 730am.  We were supposed to see the doctor at 120 and him have a PET at 240. But they called to reschedule the scan so the scan is for 1130. We were not aware when I agreed with the PET scan scheduler when she called that we could not see the doctor AFTER an PET scan so the doctor's apt has to be rescheduled. Which in a way is fine,I guess- he won't have much to talk to us about until after we have results of the scan anyway.  It should take between 1 1/2 and 2 hours for Jeff to have the scan. Jeff's new doctor saw him in the hallway and introduced himself. Explained it was better to see him after he had results anyway, told us Dr. M had given him a report and history on Jeff and assured us that waiting to see him wasn't going to hurt anything.

As soon as they took him back to start the test, the kids and I went shopping. Still had to decide on what the man with everything needed for Christmas.  We got back and sat in the waiting room about 5 minutes until Jeff was done. It was difficult for the younger two to stay away from Jeff for the rest of that day. Because he was radioactive following the test, he was to avoid young children (younger than 5) and pregnant women. Our kids didn't really fit into that category, but we figured it was better to be safe than sorry.

We go back to be with the doctor in a week.

Meeting a new doctor- 12/16/10

Jeff was referred to the Yolanda Cancer Center in Meadville. On December 16, 2010, we made our first of what will be many trips to the center.

I was not ready for the way the center looks. There is a waterfall in the huge entryway. The waiting room is twice the size of my living room, separated into a few sitting areas. It is bright and cheery. Coffee is brewing and there is a basket of goodies sitting on the counter.  Staff was friendly and welcoming.

We met the doctor Jeff was referred to. She did an exam which she said was good- no noticeable lumps other than in his neck- which we already knew. She also explained a little about the disease- it is long term and slow moving. A positive is that Jeff has no other signs or symptoms- just the lump in his neck. The only problem was- she was a radiation oncologist and CLL is better served by medication. She set up a PET scan and referred us to another doctor in the practice. Another week to wait.

History to diagnosis

A little history to get things started--

Jeff has been donating blood to the Red Cross since I met him. A few years ago the nurses started telling him that his blood pressure was pretty high.  After a year or so of him telling me his pressure was high at donation, I scheduled a doctor's apt for him. Jeff isn't one to run to the doctor (even when we should!) but because of family history, he agreed to go. At that point, the doctor was not concerned and said he should come back when he was 50.

Fast forward a few years and Jeff is still having the same problem at blood donations. However, he has gotten to the point in 2010 that the first time the nurses would check his BP he was usually too high. A few minutes sitting and he'd squeak by and they'd take his blood.

During a regular donation in July, his BP was too high both attempts and he was deferred from donating blood. He had been watching it periodically when he'd be at Walmart or CVS or anywhere else there was a blood pressure cuff. The middle of August we were at a street fair and he stopped in to see what his BP was at a tent set up by the hospital. The nurse was very concerned and only allowed him to leave after we promised he would see his doctor that week.

On August 18, 2010 he went to the doctor, was diagnosed with hypertension and started on medication. He was to return in a month to make sure the meds were working. So, on September 17, 2010, he did just that. During the exam his doctor discovered a swollen gland. Jeff denied sore throat or sinus problems but started antibiotics to fight whatever infection was brewing.  He went back for a recheck on October 6, 2010. However, at that point, the glad was still swollen so he was referred to an ENT.  On October 19, 2010 it was recommended that he have that one lymph node removed so it could be tested to find out what treatment was best.  I wasn't thrilled with removing lymph nodes but was reassured that that was the best way to have enough material to test for the best treatment.  We were warned at this point that there was a 10% chance of cancer. After blood work, x-rays, CT scans of the neck Jeff finally had surgery on December 2, 2010. Surgery and recovery went well.

On December 9, 2010 we returned to the doctor for stitch removal and pathology report. The site had healed well, but the report was NOT what we had ever thought possible. We beat the odds we had refused to even think about and got the diagnosis- Chronic Lymphocyctic Leukemia (CLL).