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).