This Pilgrim's Progress

So Far So Good

Well this chemo is working a lot better. Even though my blood counts are a bit on the low side I felt good enough to go into work 2 days, and telecommute the rest of the week. I rested a lot this weekend, and I'm looking forward to the counts going back up in the next week or so. I didn't go to church today, because I didn't think my immune system was sufficient right now, hopefully next week I'll be able to go.   I've been through enough chemo now, that I have a pretty good handle on how to pace myself and not over tax my energy.  My boss and upper management at work have been very understanding and accommodating, so that has been a true blessing.

I go in for follow-up labs tomorrow, so I am eager to see how my system is doing.

Thanks to everyone who greeted my family at church today.  Your support means a lot to us and of course keep those prayers coming.  My emotions are very close to the surface these days, especially as I regard the generosity of all of you and the Lord's grace that continues to sustain all of us, and it makes me very humble and grateful to know we have so many people praying for us.

Soli Deo Gloria!!

Bendamustine Hydrochloride

Debbie and I decided we needed to get back in touch with my oncologist at Scripps. Even though I was scheduled for chemo Friday at UCSD, we just didn't think it was very efficacious and wanted to get Dr. Saven's opinion.

Our appointment was Wednesday, Sept. 2. The night before I had pretty serious night-sweats and a temp of 102. We had a great consult with Dr. Saven, and he agreed that a different approach might be more appropriate.  Considering the shape I was in and the temperature/sweatting the night before he had me admitted immediately.  The first problem was finding the new chemo, because it's usually given on an out-patient basis, so the regular channels the BMT unit uses didn't have it. They eventually found some and scheduled the two rounds of chemo for Saturday and Sunday. Meanwhile, some other concerns surfaced regarding my kidneys, and then my fever spikes. They were also concerned over some momentary spikes in the ekg, so they wired me up with a remote model to constantly monitor it. They also gave me a couple units of blood.  I can't remember all that they did for me those first few days, but obviously I needed  it.

The chemo sessions went without a problem. I was probably ready to go home Sunday, but they kept me over to check out the other areas of concern. Eventually all the tests kept coming back negative, and they let me loose this afternoon.

I feel 100% better than I have in the last few weeks, so I think this chemo is going to work very well.  The visible swelling from tumors on my neck has significantly gone down, and seems to be continuing to do so.

With car-pooling help from a friend from work I'll be starting back to Vista Wednesday  and Thursday, and work from home Friday. I have a follow up labs Friday at 8:00 a.m. at Green just to see how everything is going.

This chemo will be  2 courses every 3 weeks for about 7 months, usually on an out-patient basis.

Thanks to all for you prayers and support. Debbie has borne the brunt of everything, so please keep her in your prayers.

Soli Deo Gloria!

Going back to work

Well I decided I needed to go back to work.  Thankfully, they are more than willing to have me back, and it will feel nice to see everyone again and get back to business. I'll be starting back next Monday, August 31.

The near future looks like I'll be going through a number chemo sessions in the next several weeks.  Long term, I'm not sure what the options are, but we'll probably find out more when we get back to my Scripps oncologist.

Tomorrow we drive Heidi up to Azusa-Pacific for the orientation, then early Sunday morning they fly out to Heidelberg, Germany. She'll be there in the study-abroad program for 3 months.

I and my family appreciate everyone's prayers.  Please continue to remember us. My uncertain future is weighing on us a bit, but we are still relying on God's providence for all things. 

Soli Deo Gloria!

Feeling better, still low energy

Monday we had to drive out to Moores Cancer Center to give two blood draws.  The first was the normal Complete Blood Count/Metabolic.  They wanted me to come back so they could get a draw to start the matching process. First they have to type my blood, etc.  then later if we go that route we'll be checking for donors. 

So I was pretty worn out after those 2 excursions, but I bounced back later in the afternoon after a short nap.  My energy levels were just about coming back to normal after recovering from the transplant and flu, now they are way down again. I will just need to calibrate my exertions and not over-do anything. Usually the first chemo after the lymphoma resurgence seems to be the toughest because your body is dealing not only with the effects of the chemo itself, but getting rid of the dead cancer cells as well.  I usually find subsequent courses not as tough as the first one.

It's still pretty much of a question mark as to what is next for me.  I'll have have another round of chemo in a few weeks (outpatient this time).  Then it's probably back to my Scripps oncologist to figure out the rest.  The transplant specialist at UCSD thinks another tranplant (with stem cells from someone else) will be the next thing.  I'm not so sure. One is the question if my insurance company will cover it, and two, if I've actually had enough time to recover from the first transplant.  The transplant is pretty grueling for the body, so we'll have to see what my oncologist's at both places decide or recommend.  I could probably continue on with occasional chemo, but I don't know if that's something they normally can do for lymphoma. We'll see.

I'm going to go back to work next week, Lord willing, so that will be nice to get back to something other than myself.  I'll probably work from home a lot and come into the office when I need to. 

I'm going to kick back today and just relax and nap.  Feel free to call or stop by (call first), I love the company.

Soli Del Gloria!

Back from the Hospital

They released me at 2:30 p.m. today. I was only supposed to be in overnight, but they were worried about my kidneys, so they kept me any extra day. I'm home now, feeling pretty weak, mostly pain free. The  chemotherapy cocktail they gave me this time is Gemcitabine Hydrochloride and Oxaliplatin.  It will take a day to two to flush it out of my system, the the usual side affects and some different ones to watch for.  I'll go in tomorrow for another blood test to check out my kidneys. 

It's great to be back home.  Thanks for all your prayers!!

Soli Deo Gloria!

Lymphoma is back

Hi,  just got off the phone with my UCSD oncologist. He said the PET/CT scan shows that the lymphoma has come back aggressively.  I’m checking into UCSD Thornton 3W for some chemotherapy at 1:30 today.  Won’t know my room number until I’m there. But I’ll have my cell phone with me.

 

Dr. Ball, the oncologist, said that down the line a little we will need to look at getting another type of BMT  (either gene- related, or stranger-unrelated).

 

In the meantime, thank you all for your prayers and support, they are much appreciated.

 

Soli Deo Gloria!

Doing well

I'm feeling pretty good these last few days, so I'm hoping to make it to church tomorrow.  We've finally got the pain-killer dialed in, so I'm feeling a lot more comfortable.  The congestion and cough has diminished greatly, so I feel it's safe to go out in public. I'm certain that the flu is long gone.

Next week we've got the PET/CT scan on Thursday. That should show us where I'm am with the cancer. We are hoping and praying of course for a good result.

If the diagnosis is correct, and my "protruding disk" is the cause of my back-pain and sciatica on the left side, then it will mean a referral to a specialist to see what can be done about it.  Debbie has sciatica too, so maybe they'll give us the "gimpy family" rate!!

Regardless, I will be ending my medical leave and going back to work September 1. Even if the pain is still ongoing from the messed up disk, I'll be able to manage it with the meds and work effectively.  I'll probably work from home a few times a week, and maybe try to carpool with someone. I'm looking forward to getting back into "the world" and having something to focus on besides myself!!  My energy levels and strength still have a way to go, but that's typical for BMT patients. It can take 6 months to a year to get back to normal.

Thanks to our friends and family for your continual prayers and encouragement.  Heidi is getting ready to go to Heidelberg next Friday, and Andrew starts college this week. We are all very excited for the future and praise the Lord for his provision for our family. 

Soli Deo Gloria!

"Better" news

Well, we know now what has been giving me a lot of back and hip pain the last 2 or 3 weeks.  The MRI I had Friday shows a "protruding disk, between 3rd and 4th lumbar" in my spine.  It's nice to know that it's not the cancer, but something more mechanical.  Still hurts like heck, but knowing why is a great comfort.

The struggle we now have, and have had the last week, is getting the right pain-killer so I don't go over 2000 mcg of acetaminphine (tylenol) in a day.  This is because of the Warfarin I'm taking for the blood clot, the tylenol affects the INR.  Normally 4000 mcg of tylenol is fine, and the vicodin and darvocet take care of most pain. But, trying to cut back on dosage, leaves me with more pain.  The doctor has prescribed Norco, and supposedly it only has 325 mcg. of tylenol in it, which should make the dosing easier to figure out.

Even my cough is finally starting to fade away, the zithromycin is doing it's magic!!

Praise the Lord for the good news!!  Please keep those prayers coming. While figuring out the pain-killer dosage, sometimes I can really tell that only thing helping me endure the pain is the Holy Spirit's constant presence.

Soli Deo Gloria!!

Hanging in there!

I don't remember if I've mentioned it in previous posts, but for about two weeks now I have had some sciatica-like pain in my left hip and leg. It seems to originate around or near the hip socket and then goes along the outer side of my leg down the the foot. At first is was just a minor annoyance, but now the pain has increased and I have to take darvocet or vicodin to control it.  I thought it might be a symptom of the recurring lymphoma, but my oncologist at USCD doesn't think it is, so they will be scheduling an MRI to check it out. 

I'm also still dealing with persistent upper chest congestion and cough.  Otherwise I feel mostly pretty good. I've been trying to walk about 5 or 6 blocks each day, but it's hard to do with the congestion. It seems to help the hip pain though, and my legs feel better with the exercise. I've been doing a little maintenance pruning of the roses and it felt good to get out and do some productive activity. Although a bit on the hot side, the last few days have been very beautiful, and sometimes I just sit for a couple of hours on the back porch and watch the hummingbirds and other flying critters enjoying the roses.  My energy levels seem to be gradually coming back, so I'm able to do more around the house.

Debbie has taken up veggie-gardening this summer, and we've had a nice bumper crop of tomatoes and zuchinni.  She gets a big kick out of it and enjoys the fruits of her labor. Andrew helps out a lot, since Debbie is still dealing with (real) sciatica.

My daughter, Heidi, and her fiance, Zack, left this morning for an 8 day backpacking trip in the Sierra's. They have 9 people in their group this year. All of Zack's siblings are going this summer, along with Heidi's college friend Janae (beautiful voice!!) and her fiance, and Tim Paylor (an old friend of Zack's).  Our house looked like the staging area for an Everest expedition last night as they got all the food portioned out and stuffed into bear canisters, and odds and ends of equipment prepared.  Heidi and Zack met during a Sierra backpacking trip (with the Winslows), so these Sierra trips have a special significance to them.

My son, Andrew, has been getting ready to start college in a few weeks. He's really excited about it and looks forward to the new experience.  This week he's been focusing on his audition for the music ensembles and thats been both a fun and frustrating exercise for him, but mostly fun.

The Lord has certainly been gracious to our family!

Soli Deo Gloria!

Not-So-Great News

Debbie and I met with my UCSD oncologist, Dr. Ball, this morning at 11:30 a.m.  He told us the PET scan indicated the re-occurrence of the lymphoma in some tiny spots on the scan. As we talked about my history, especially the flu,  he came to the conclusion that the PET scan was not really definitive, because the spots were very small, and there is the possibility that they may be due to my body triggering the immune system and fighting the flu bug that I have.  So, we are going to wait another month, and then re-do the scans and blood tests, and then see what the results look like. 

We are still absorbing the impact of the news and I don't think the full-force of it has hit us yet. But it will, and we'll need God's grace to persevere and not let ourselves get overwhelmed by it all.

So, for now my job is to recover from the flu, get the warfarin regimen established, and get as healthy and strong as I can. The Lord has been very gracious, and gotten us through this so far, so I'm very hopeful for the future.

Heidi comes home late Sunday night from Oberlin, and we're looking forward to seeing her.  Andrew registered for classes at Cuyamaca today and he's excited about starting college in a few weeks. We'll have Heidi around for a few days, then she'll go on a backpacking trip, and afterwards will be with us for a week before heading to Heidelberg for her "study abroad" program during the Fall semester.

We are certainly Blessed as a Family and I praise the Lord for his provision for us!

Soli Deo Gloria!