April's follow ups

On Friday April 27, we followed up with another treatment with Oncology for treatment 7 of the IVIG. At treatment 6 our nurse drew some labs and checked them. Prior to treatment Jeff’s IgG level (normal 400-700) was 315. On March 30 the level was up to 939. Dr. H is happy with those and told us that we didn’t have to do anymore.  I am SO glad. Because the last CT scan (in January) was good, he has to have a repeat of CT for follow in July and then see the doctor. No blood work or treatments until the CT scan! Whoo Hoo!! Now we get to remove the Power Port and return to normal! Hopefully no more need for treatments from there for a very long time.

An April 16, he had a follow up with infectious disease. Unfortunately, things were not as well as we had hoped there. His cryptococcal titer was still 512- the same as January. We were hoping for a result in the double digits. So, he has increased his meds with that and we will do a titer again the beginning of June. Because he is doing well otherwise and feeling good we don’t have to actually see her until SEPTEMBER! We will do follow up after the blood work via the phone.

So, blood work for the titer in June, blood work to follow with his liver functions because of the meds every other month (we’ve just been doing that with oncology with the IVIG for the last few months and everything is fine.), a CT scan in July and then a follow up apt in July and September.  Things are looking good!

Of course, there are always other things going on around here though with the 4 kids.

Faith has her first Communion on Saturday May 5 and Clinton has Confirmation on Sunday May 13. Please keep both of them in your prayers as they make these important Sacraments. 

Thanks to all of you for all of your prayers through our difficult 2011.

Elizabeth and Jeff.

A very belated update on things.

Hello all. (first off I apologize, I started this about 3 weeks ago and never finished it.)

After talking to different people in the past 2 weeks I’ve realized that I have been very bad at updates on Jeff’s health and for that, I apologize. I had been promising myself for months that I was going to record Jeff’s journey with cryptococcal on the blog but I haven’t done it. It isn’t pretty and I’m not sure I want to revisit it this far out. Again, I apologize.  So, this posting will pretty much just bring everyone up to date to this point and all that has passed before will stay in the past where it belongs. And with any luck- we’ll never have to revisit that aspect of his journey again.

December was very busy with visiting nurses,  doctor apts, blood work, immune-boosting treatments and in between, trying to get ready for Christmas.  As December passed and January arrived, things finally started to slow down on all fronts. The blood draws changed from 3 times a week to weekly to every 2 weeks and finally now only monthly. The doctor appointments have spread out to 3 months between visits for just about everyone.

In January Jeff had a CT scan which shows the CLL remains in remission. Because of the crypto infection, he is receiving the IVIG that we started the beginning of November. His oncologist would rather err on the side of caution. He has had 3 treatments so far and will have at least a total of 7. Those occur every 4 weeks. They did draw levels when he was there the beginning of Jan, but they take a little longer to come back and we haven’t gotten those results yet. I’m sure they are better than they were in October before we started the process but because the doctor wants to continue the IVIG no matter how good they are, the results really don’t matter. I think the next time they will be checked is after 6 treatments. We don’t officially see the oncologist until the end of April during treatment #7 to know what the plan is after that.

We do know that the retuxin Jeff was going to get through Jan and Feb to help keep remission a few years longer has been canceled because of the cryptococcal.  That was an optional treatment for him, not a necessary one so we don’t feel like there will be problems from not having it.

Now, as far as the cryptococcal—Things with that are SO much better.  As a matter of fact, Jeff says he feels back to normal.  We last saw the infectious disease doctor around the 20 of January. She is SO pleased with  his recovery. She has hinted that everything has gone textbook as far as his recovery (my words, not hers.)  She did say that things could not have gone any better than they did.  He had a few blips in the treatment as far as his blood work showing the drugs were affecting first his kidneys and then his liver. But, all that has settled down and he was able to finish treatment. Now his oral medications have been decreased and we don’t see her again until the middle of April. At this point we aren’t sure how long Jeff will have to stay on a maintenance dose of the drug. Could be a year, could be 2 years or could be forever. The dosage could end up decreasing again, we just aren’t sure at this point.

To check how affective things are, he has had blood work and a lumbar puncture to check the titration of the cryptococcal still in his body. When we had the first set drawn after he was discharged from the hospital the result was greater than 4096. (The lab doesn’t routinely test any higher than that amount which is equal to 13 times out). The last time he had some drawn (mid Jan) it was down to 512 (= to 10 times out.) He goes back again in March to see how low we can get it. We’d like to get it down to 0 but the doctor said she’ll be happy to get it down to a 1 or 2.

Jeff has made comments to people in the past week or so saying how he thinks he feels better now than he did even before he started the chemo a year ago. So, things really are at a good place right now.

I hope that all is going well for each of you and thank you again for the love and prayers that you’ve given us through 2011.

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.