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!

Gerry is in the hospital

Friends and Family,

Gerry has been in the hospital so he hasn't been able to post.  I set up a CaringBridge site to keep you informed about his progress.  Feel free to check it out:

http://www.caringbridge.org/visit/gerryseifert

Debbie

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!

Blood Clot

I'm still fighting off the flu.  I think I'm mostly over it, but still have some chest congestion and a cough.

Today went in for labs and scans. My metabolic and CBC panels came out great, no problems. This afternoon, found out that they detected from the CT scan a blood clot where my venous catheter used to be.  My doctor prescribed an anticoagulant and Debbie gets the pleasure again of giving me two shots a day. Later I can go to a pill form, but I have to take some sort of class (?) first.

They haven't finished analyzing the PET scan yet, but we'll get the results Wednesday. That scan will pretty much tell us if the cancer is gone or not.

I see my UCSD oncologist Friday and I guess we'll find out what's next in the on-going adventure!!

Soli Deo Gloria!!

Flu gone, catheter going

Well today I feel pretty good. I think the flu is pretty much gone, just a little residual congestion. I'm getting the catheter out Friday afternoon. I'm pretty excited about that!! I took a little walk yesterday around the neighborhood. It was slow going, but I did pretty good, although I was wiped out when I got home. I still have a ways to go to recover my strength. But I am very thankful for the progress my body has made.

Soli Deo Gloria!!

Good News

I went in for my routine blood panels (cbc and metabolic) today. The results were very good, all counts are up.  The nurse coordinator said that I could probably get my catheter removed this week (yea!!!), and she was going to schedule some scans for next week.  I have an appointment to see an epidemiologist Friday to check on my flu.  I think it's starting to go away, but it's a gradual thing.

So blood counts are going up, and I'm starting to kick the flu! Praise the Lord!!!

Soli Deo Gloria!

Day + 25, Flu still here

I still have the flu, but I think the medications are starting to work. My chest congestion and coughing is less and I'm able to get a pretty good night's sleep. I still get some coughing "jags" going every once in awhile, and it always sounds awful!! I wouldn't recommend trying to visit me while I have this flu, I'd hate to give it to anyone else.  Thanks to everyone for y0ur faithful prayers and support.   Heidi is at Oberlin for a chamber music camp for 3 weeks, so it's real quiet around here.  Andrew is working a lot for his uncle so he's often not around.  It's sometimes just me in the house holding down the furniture!!  I am getting a lot of reading done. I'll publish a list of the books I thought were the best.

Please continue to pray for my niece, Brittany Wnek and her family. She is still experiencing pain in her legs and tailbone after her operation to remove the tumor in her head.

Soli Deo Gloria!

Day +22, got flu

Went in for another lab test yesterday and afterwards saw my doctor at UCSD Moores Cancer Center.  Good news is I'm doing pretty good. My counts went down a little bit but looked pretty good. I mentioned the cold/cough that I had, and Dr. Ball checked my chart to see what they had done at the BMT ward.  One of the tests for flu came back as positive, but the result wasn't until 6/30, so I was already checked out. But no one had called me to let me know that I had the flu. Dr. Ball wasn't pleased,  but he got on it right away and they gave me a prescription for Tamilflu and Rimantadine.  Hopefully that will help me kick it.

Soli Deo Gloria!

Always Tired

I had a good weekend, being home was the best part.  I'm still feeling pretty tired most of the time, so I do a lot of napping. Still have the congestion, don't know if it's hay fever allergy or a cold. I did sleep with the Hepa filter on all night and that seemed to help. I'm taking an anti-viral (along with anti-bacterial and anti-fungal pills) med, but I think it only protects against the herpes virus.  Anyway, I just need to be patient and take the naps when I need them. 

Heidi ran in the triathalon Sunday and did very well. The chain fell off her bike on the transition, but she was able to get it back on and ride the bike portion with no other problems. She said she felt real good on the run and still had plenty of energy.  I didn't go of course (I need to avoid crowds), but Debbie did and enjoyed watching Heidi race.

My birthday was Saturday, and it was kind of nice to have made it through another year!!  I don't feel 57, but I guess I do look it!  Anyway, I'm looking at each additional year as a wonderful gift from the Lord. The weekend was warm and beautiful. Sunday morning I sat outside on the porch and read a devotional, and felt very blessed to be alive.

Soli Deo Gloria!!

At Home

Well it took all day yesterday, but finally they released me to come home. It felt great to be home and to sleep in my own bed.  I've got a bunch of medication to take, and that's still taking a toll on my digestive system.

Soli Deo Gloria!

Get to go home tomorrow

The doctor just came by. He said I'm doing very well and I'll probably be able to go home tomorrow!!!

Soli Deo Gloria!

Day +13

Had a very good night. Today my white blood cell count is 5.0. I'm hoping the doctor will decide to let me go home today. Trying to get back to eating solid food, but the stomach is still pretty touchy.  Did some laps this morning. It's now just a waiting game.

Soli Deo Gloria!

Day +11 White Cell count is 0.9 !!!!

Praise the Lord!!  My WBC is 0.9 , which means the stem cells did their job of rebuilding my bone marrow and I'm now producing white blood cells.  This is the main indicator of how your immunity system is doing. Now it's just a matter of time to wait until the counts are sufficiently high enough to send me home. I also have a nagging and painful cough that I need to get rid of, and my electrolyte balance needs improvement.

But it feeeels sooo good to be on the down hill side of this journey!!!

Soli Deo Gloria!

Happy Fathers Day!!

The last few days have been pretty tough. I finally figured out the pattern though.  Each fever lasts  2 to 4 hours. Depending on when they did your labs, you may get antibiotics. If your fever goes above 102 they give you tylenol. When your head starts sweating is when the fever has broken. Of course all of this wipes you out.   The fevers are caused by what the stem cells are doing to rebuild your bone marrow. But they can't tell a bad fever from from a good fever, so thats the reason for all lab tests and antibiotics. So it's again an endurance contest, putting up with the fevers while the stem cells do their thing. Then you have things like a flakey hvac system, rampant diarhea to keep it even more exiciting.

Hope everyone has a great Father's day!!

Soli Deo Gloria!!

Day +8

Had a good night. My counts are still low, and I may need a transfusion today.  All of this is pretty normal progress for a BMT. Hopefully by next week my counts should start to come back up.  Pain meds made me comfortable, but I'm still pretty much just having Ensure and fruit juice for my meals.

Soli Deo Gloria!

Rough week

The last few days have been a bit rough. My blood counts are very low which means I have no energy and no immunities. I've also had a fever, so they gave me antibiotics and even  transfusions of platelets and red blood cells. I've been experiencing a lot of pain in my stomach whenever I eat anything, but the pain meds seem to be working well for that. Today, with managing the pain better I got a lot of great rest. Last night they did the transfusions, so I never got back into a good deep sleep. I'm feeling pretty good right now, and I think I'll even watch a netflix movie. 

My neice, Brittany Wnek, had a pretty major surgery today to remove the tumor in her brain. It apparently was the size of a que ball, which they weren't expecting. Please continue to pray for Brittany and her family.

Thanks for all your prayers, they have been really sustaining me this week!!

Soli Deo Gloria!!

Day 0

Today was Day 0, or the day I got my previously harvested stem cells re-infused.  There were 8 bags of cells to reinfuse and it took about 3 hours. No complications or severe reactions. I felt flushed after the first 3 bags (probably from the DMSO which is used to preserve the stem cells), but after that it was normal. They monitor your vital signs after each bag and mine were stable.  It's been 3 hours since the last infusion and I'm feeling pretty good. I had some dinner (always good), and took 10 laps around the floor. Now I'm watching TV and catching up on email.  The next few days I'll probably be feeling the affects of both the chemo and the recovery, and my immunities will be very low. It takes a couple weeks for the blood counts to come back up and your immunities and bone marrow to recover. It's amazing the medical technology that's available to fight lymphoma and other cancers. I've also been humbled by the sefless service of all the medical personnel that I've come across. 

Soli Deo Gloria!

Rest Day

I completed 5 days of BEAM chemo yesterday, and today is a 'rest day', no chemo just saline. The decadron they gave me also raised my glucose levels, so they test and give me insulin while I'm on the steroid. That should taper off today, as it will be the last day for the decadron too. Tomorrow they will infuse back the stem cells that were harvested last week, then the remainder of my time here is waiting for the blood counts to come back up to where they feel it's safe for me to complete my recovery at home.

I'm doing good, they take good care of you and are very attentive. The food is good and I'm eating well. No nausea or pain or other side affects right now. I suspect I won't have any side affects other than being tired, but we'll see. My immunities will be nill while the stem cells rebuild my bone marrow, and that's when I'm most vulnerable to infection. They often give you anti-biotics and anti-fungals to combat or prevent any infection.

I'm keeping busy reading, watching the TV, and browsing the web. I also do laps around the BMT floor, which feels good after all the sitting all day. Meals and showers are the highlight of my day!

Soli Deo Gloria!!

BMT

I checked in to UCSD Thornton Hospital Thursday. Today is my second day of chemo or day -5 to the countdown to zero day which is the day I get the stem cells back. I'll get chemo the next 3 days, then a rest day before the transplant which will be on 6/11.  After the transplant it will take a couple of weeks for me to recover before I go home for the remainder of my recovery.

They are taking good care of me here at Thornton. Food is good and the ward is relatively quiet. I'm getting some good sleep at night, even though they wake you up to take your vitals every 4 hours. But you get used to that. They are pumping quite a bit a fluids through my body, so I'm urinating frequently. That wouldn't be that bad, except they keep track of all your fluids, so you pee into a urinal with measurements. My apologies if that's TMI (too much information), but my life kind of revolves around that while I'm hospitalized.

My room number is 366 at UCSD Thornton West, 3 floor.  I can have visitors anytime (no sick people or kids please), but the afternoons are best, mornings can be a little busy as they do rounds, vitals, etc. My cell phone works well here, but you can call my room direct at 858-657-6366. Call me before you drop by and I'll make sure I'm not in the shower or doing laps around the ward when you come by!!

Soli Deo Gloria!

Apheresis

Today was my third day of apheresis (stem cell harvesting). It's going well, apparently the neupogen is doing it's work and I'm producing a good quantity of stem cells.  Today might be my last day, if not then tomorrow will be.  It is pretty boring being hooked up to the machine for six hours, but I have a nice thick history/biography book (parallel biography of Hitler and Stalin)  to read.  I haven't had a re-occurrence of the severe bone pain, just minor twinges now and then.  Debbie has been keeping me company and she's been reading a nice thick bio of Teddy Roosevelt.  The nicest part is being able to come home to my own bed each day (instead of staying in a hospital).    Next  Thursday I'll be checking into the hospital for the next phase,  4/5 days of BEAM chemo, followed by the stem cell transplant and recovery.

Soli Deo Gloria!

Bone Pain

Last night the bone pain from the neupogen came on in a big way.  Thankfully, I had darvocet to help with the pain, so I mostly slept through the night.  Last night most of the pain was coming from the sternum, which felt like I was having a heart-attack.  This morning it's mostly coming from the pelvic bone, so it feels like I have arthritis in my hip joints.  The positive out of this is that obviously the neupogen shots are working, and my bone marrow is producing more stem-cells. Next Tuesday I start the harvesting of the stem cells (apherisis) at the Moores Cancer Center. It's an out-patient deal, but I'll be there a good portion of the day.  My daughter is home from college this weekend (and for the summer), so it's been wonderful to have her here. 

Blessings to all our family and friends, and be sure to fly the flag and remember our veterans and their sacrifice for our country's freedom!

Soli Deo Gloria!

Neupogen shots - piece of cake!

Well, Debbie gave me my neupogen shots yesterday, and my arm didn't fall off or anything!!  She did a good job, and I really didn't experience any pain.  As the neupogen starts to take hold though I'll probably feel some side-effects from it, especially the bone pain.  They didn't give us pre-loaded syringes, so Debbie had to fill them from these tiny little glass bottles or vials. That was probably the hardest part. I'm feeling pretty tired today and the catheter still bothers me. I'll probably do a lot of sleeping today again.

Soli Deo Gloria!

Same - o Same - o

Nothing new to report today. I had a pretty good weekend.  Yesterday I was pretty wiped out from the Cytoxan chemo that I was given Saturday.  Slept alot, took tylenol and darvocet when I needed it.  The central venous catheter is still bothering me, and I actually have an aching pain on the right side of the chest, and when I swallow. RN at the infusion center said that it was normal to experience that. It's a Hickman tunneled catheter that goes up to my jugular vein. So instead of a "Harkonnen Heart Plug" I have a "Harkonnen Neck Plug".  Today I got to take a shower after taping the catheter with saran wrap so it wouldn't get wet. Much more satisfying than a sponge or washcloth bath!!

This evening I start the neupogen shots. That should be "interesting", either Debbie has to give the shots or I have to do it myself.  I get 1080 mcg. which is a pretty hefty dose. The neupogen is supposed to cause your bone marrow to produced excess stem cells and throw them into the veins where they can be harvested.  One side-effect is bone pain, so I probably won't be a very happy camper the rest of the week. I hope I have enough darvocet!!

Soli Deo Gloria!

Small chemo today

Went into Moores Cancer Center today for some chemo. It was cytoxan to encourage production of stem cells.  Also had the dressing changed on my catheter.  The ends of the two tubes  are red and blue, so it kind of looks like I'm wired for stereo!!  They have a very large and very nice infusion center.  Tomorrow I have to go back to get the dressing changed again, and the same drill on Monday. Also on Monday I'll get the Neupogen and they'll show me how to do the injection.  I'll probably not go to church tomorrow. I want to stay as healthy as possible, and it's a good idea to avoid crowds.  My son is playing the drums at church, so I regret missing that, but Debbie will be there. 

Soli Deo Gloria!

Catheter Placement Today

I went to Thornton Hospital today and they placed a central catheter in/on me. This will be used for harvesting stem cells and for chemotherapy as well as anything else where they need to get something into me, or obtain blood for labs. It went pretty well. I'm feeling a little achy pain in my neck, and I hope it will go away soon. The pain is where the catheter actually goes into a vein, the other end is fine (where it comes out of a tube beneath the skin on my chest).

Tomorrow I go in for some chemo (cytoxan) and to have the catheter dressing changed. The following 3 days I go in to have the dressing changed. Then next week I give myself daily neupogen injections.

Yesterday was my last day of work before going on medical leave/disability. Our boss treated the whole department (7 of us) and we all  went to see the new Star Trek movie. It was a good time, and the move was terrific. The director did a fantastic job and the script wasn't too hokey.  I work with a great bunch of dedicated IT professionals, and they all work very hard. I hope our company realizes how fortunate it is to have such a good IT team. I've been in IT for about 25 years, and this is the best team I've ever been part of. Unfortunately the department is way understaffed, so I hope and pray that they won't get burned out this summer. We have hired on a remote DBA services company, so I'm more relaxed this time that I don't have to worry about work as much as I did last winter while going through CHOP. I plan to focus on just getting well this time around.

All through this time (since last August) my family and I have been sustained by all your prayers.  We've definitely been blessed by the Holy Spirit during this difficult time and in ways that I can't even describe right now. So, be assured, your prayers are at work and are working!!

Soli Deo Gloria!!

Transplant schedule

Reading over the last few posts, I realized that we know people who've been battling cancer or other diseases for a lot longer than I have. Not that it invalidates the stress I've been feeling, but it helps me to remember that I need to keep my eyes on the path and on the Lord! Life is an endurance race, not a sprint!!

Transplant Schedule:

May 13 - CBC lab

May 14 - Last day of work, leave of absence starts 5/15/09

May 15 - catheter placement

May 16 - Cytoxin infusion (mini-chem0)

May 19-23 - Daily self-injections of Nuepogen.

May 26-30 - Stem cell harvesting (apheresis)

June 3 - Appt. with Dr. Ball

June 4 - Admission to hospital, Thornton

June 5-9 - Chemo (BEAM)

June 10 - Rest Day

June 11 - Reinfusion of stem cells

June 12- 27 - Recovery in hospital

June 28 - August 30 - Recovery at home until I'm ready to go back to work.

(recovery times are variable, depending on how I'm doing and how fast it takes for my blood counts to start returning to normal).

Soli Deo Gloria!!

Good News

We met with my oncologist at UCSD today. He gave the go-ahead for the bone  marrow transplant!! Debbie and I are very encouraged by this, we've been waiting what seems to  be a long time. The process won't start until May 15, so we also get to go to Heidi's Junior Recital on May 10!!  I'll post the schedule for everything later. We are very happy we'll get to go the recital, Heidi has been working very hard on it. We are very proud of her!

Soli Deo Gloria!

Last of the tests today

I go in today for an echocardiogram and EK.  Last week I had a CT and PET scan and a CBC lab done. My blood counts are good, and the scans showed just two small areas of cancer left. Tomorrow I see the  oncologist at UCSD, and hopefully we'll go forward with the BMT.

I'm doing pretty well.  Physically I tolerated the ICE chemo pretty well, no nasty side affects. Idid lose most of my hair, and the neurapthy is very noticeable in my feet.

But I guess the stress of it all is wearing on me. I had a meltdown yesterday, so I think it finally built up to a point, and then something triggered the meltdown.  I've been working full time, so its probably not surprising to have things pile up on me. 

We are all so ready for this lymphoma thing to be over with so we can get back to some semblance of a normal life. 

2nd Round of ICE done

Well, they checked me out of Scripps Green Sunday morning, and it really felt great to be home yesterday. I'm back at work today. I go into for an Neulasta shot this afternoon.  In about 2 weeks, UCSD will scan me again, then hopefully I'll get scheduled again for the BMT.  I was hoping I wouldn't be cooped up during the summer with this, but oh well. I'll be glad to get it done!! The hair is mostly gone now. It started going last Wednesday, and yesterday I looked like I had the mange!!  Debbie cleaned me up with a buzz cut and I look much more presentable now. At least it's hot now, so my hair-free dome won't freeze like it did this winter!!

Soli Deo Gloria!

2nd Round of ICE

Well I'm back in Scripps Green Hospital for 4 days of ICE chemotherapy. They checked me in right after getting the results of the CBC blood test yesterday (Thursday) morning. I'll be here probably till Sunday. They are taking good care of me here, and it's pretty much down to a routine for me. My hair started falling out again this week, and I'm feeling a bit more peripheral neurapathy (numb and tingling fingers and toes) too. Otherwise I'm feeling pretty good.

Soli Deo Gloria!!

Happy Easter!!

Well, I had a pretty good week.  My body tolerated the ICE chemo fairly well. I was a bit low energy Saturday, Sunday, and Monday, but then my energy levels came back up the rest of the week.

I went into Scripps for a follow up CBC Thursday morning. The doctor said the levels looked good, they were low, but higher than when I left the hospital.

Friday the effects of the Neulasta really hit me hard. Fortunately I had some darvocet to help me over the worse parts. Even on darvocet my hips joints were aching like I had arthritis in them!!  This morning I woke up feeling a bit better. The bone pain is only in a few spots and only lasts a few seconds, so I haven't felt I needed to use darvocet today.

The plan for next week is I'll go in for another CBC lab Thursday.  If the counts are high enough they will probably admit me Friday to have ICE over the weekend. If they aren't quite high enough, then they'll probably have me come in on Monday for the chemo. 

As soon as I finish my second course of ICE, then it's back to UCSD to have them schedule me for the BMT. Timing is variable depending on what Dr. Ball wants to do. He might have me get a CT/Pet scans, then decide on the timing. We'll just have to wait and see.

Hope all of you are having a blessed Easter weekend. Our family certainly has a lot to be thankful for.

Soli Deo Gloria!!

Four days of ICE

Well, it's great to be back home today!!  The two days of ICE turned out to be Four days!!!  One of the drugs was a 24 hour drip, and another was 4-6 hours each day for 3 days, so they just keep you in the hospital because you'd end up being there forever anyways!!

I was at Scripps Green Hospital for the ICE chemo, had a nice private room in their bone marrow unit, and the nurses and assistants were very attentive.  The food was pretty good, but practically no fiber so I was a little "backed-up" after four days (better now thank you!!!).  Pretty strong stuff, but so far I'm doing pretty good on it. They give you big doses of anti-nausea meds before, during and after your treatment, and some stuff to protect your bladder.  Today no nausea. I am feeling a few side affects from the neulasta injection, but I was expecting that. The neulasta is to help beef up the production of white cells, because ICE does tend to affect the bone marrow a bit.   The back pain left after the first drug, so this is gooood stuff. The on-duty oncologist, Dr. Miller, showed me where a swollen lymph node in my neck was, and the first day it was like a hard marble, but by the second a lot softer and actually smaller. Now I have trouble finding it again!

I'll go back to the BMT unit Thursday morning at Scripps to get a CBC panel and have Dr. Miller check me out. Then we'll probably make an appointment for at least one more round of ICE the next week or two.  After the 2nd round of ICE, I'll probably get CT/PET scanned again just to see how its going. Depending on that, then its either a 3rd round of ICE, or on to the BMT process over at UCSD.  My doctors in both places seem to be working together better, Dr. Miller actually called Dr. Ball at UCSD to make sure the regimen they had me on was what Dr. Ball wanted!!  So answered prayers all over the place!!

Debbie visited every day, and actually was with me most of the day Tuesday and Thursday. I also had a great visit from the Ewings which was a blessing.  You feel a little isolated sitting in a room all day, so it was great to have the company.

I tried out the clothes and gear I bought for my 3 week BMT hospital stay, and most things worked well. I bought some knit athletic shorts from Wal-mart for 5 bucks each, and they were the perfect thing, comfortable and modesty preserving.  The electric shaver pooped out on me after I had shaved one cheek!! Andrew went and bought me another (and better one) so I wouldn't have to go around half-shaved!!  During the BMT I'll have a central catheter line (Dune fans, think "Harkonnen Heart Plug"), so I won't be able to wear t-shirts. But I have quite a collection of old hawaiian shirts that I'll probably use.

I had my work laptop with me and was able to do a little work after a few glitches. The Scripps IT department's instructions for connecting to their WAN were incomprehensible!!  I tried my Verizon card, but that needed activation, so I sent an email by smart phone and my boss was able get the card going for me. I really needed it the next day to help get a job restarted and reports generated that the sales staff was hot to have. But now I know that for UCSD I'll need to use the broadband card because they don't have WAN access for the patients.

Well I'm getting quite chatty today, so I'll cut it off and save whatever else I have to share in tomorrow's post.

Soli Deo Gloria!!!

New subscription tool

Bloglet.com the provider for the Subscription widget that used to be on the side has gone out of business.  So those of you who have subscribed are probably not getting email updates.  You'll need to re-subscribe using the FeedBlitz widget that's right under the calendar. Just type in your email address and hit the subscribe button. Let me know how it works!!

ICE on Tuesday

Well, things are moving again. I'm scheduled to check in at Scripps next Tuesday for 2 days of chemotherapy.  The treatment is called ICE (http://www.cancerbackup.org.uk/Treatments/Chemotherapy/Combinationregimen/ICER-ICE), and it takes a while to drip the drugs into your system.

There are the usual side effects. It will be interesting to see how my energy levels are afterwards. That will affect my ability to work if they are low.  I did pretty well on CHOP, so hoping things are uneventful with the ICE.

Soli Del Gloria!

BMT on hold

We saw the BMT oncologist, Dr. Ball, at UCSD today. After hearing about my back pain he decided to put the transplant on hold until I get a couple more rounds of chemotherapy. He feels that would insure a better outcome for the transplant.

So, now we wait to hear from Aetna on whether we can go ahead and get the chemo at UCSD, or if we have to go back to Scripps for it.

We've had more false starts on this transplant than a "C" swim meet!!

Pray for us. We're a little stressed by this yet-another change in plans.

Soli Deo Gloria!!

Things are moving right along

Friday evening we received a call from the Nurse Coordinator at UCSD.  We are scheduled for a consultation with Dr. Ball and her  Wednesday.  They'll confirm and go over the timeline with us. If there are no changes, I'd be starting next Friday with getting a Catheter put in.  Things are finally starting to move along after our long wait!!!

Soli Deo Gloria!!!

Good News

We got the results last night of the PET and CT scans this week. Apparently they aren't that much different from the scans two months ago.  So, no extra Chemo, we will forge ahead with the stem cell transplant.  The nurse coordinator said she needs to send all the test results into our insurance company, and then next week we'll get together with her to discuss the next steps and the timeline for the transplant.  That will also be good so I can let my work know when I'm going to be on leave.

It's very encouraging to know that I won't have to go through another round of chemo, and that I'm on the road for the transplant.

Thanks to everyone for your prayers, and please continue to pray for me and my family. It's going to be pretty tough for Debbie when I'm in the hospital, so please pray for her endurance and patience.

Soli Deo Gloria!!

"Walk On!!"

I was feeling "down in the dumps" the other day. I was driving home from work and "Walk On" by the Isaacs came on Sirius' radios Bluegrass Junction. Boy, what a rousing and encouraging hymn. It was their Wednesday night gospel program, and there were a bunch of great bluegrass gospel tunes, but this one really spoke to me and got me out of my "pity-party".  "Walk On" is on their newest album "Big Sky".  They break out of the strictly bluegrass string band mold a little on this one. "Walk On" had some persussion (a "cajon" ??), but it did not detract at all from the song.

Here are the lyrics:

 Walk on
Walk on

*Chorus*
walk on brother walk on sister walk on children you gotta roll wit the rock through the shifting sand walk on through the valley walk on up the mountain walk on through the wilderness if your ever gonna make it to the promise land walk on

when you feel temptations tugging at your heels (walk on) When the devils at the crossroads trying to make a deal ( Walk on) don't stray to the left don't veer to the right (walk on) cause straight is the way that leads to light

Chorus

if you're weary from the weight of the world on your back (walk on) if you stumble get up don't worry bout that(walk on) keep your eyes on the narrow road (walk on) someday its gonna turn into a street of gold

chorus

were all walking the same road were just wearing different shoes  you better lay down that heavy load you gotta keep on walking or the devils gonna get you

Chorus 2x
walk on
walk on

If you need a spiritual "pick me up" find this tune on the 'net and play it (its on YouTube: http://www.youtube.com/watch?v=Rqw22vf-Mbk ) . I was also struck by how well it meshes with my personal life theme, "a pilgrimage on the narrow road of righteousness".

Soli Deo Gloria!!

More tests

This past Friday I went through a bunch of tests at UCSD Moores Cancer Center and Thornton Hospital. Tomorrow (Monday) I have to go in for a PET scan, then Wednesday I have an appointment for a CT scan.  Most of these tests are to submit to the insurance company for their approval of the transplant. The insurance company wants some assurance that you're a good candidate for surviving the transplant before they approve the procedure.

The PET scan is basically to see what if anything the lymphoma is doing right now. It's been almost 2 months since my last scan, so they want to take another look. If they think the lymphoma is making a comeback, they might want to run me through some more chemo. I'm hoping the cancer is quiet, because chemo will delay the transplant and I'll probably have to go back to Scripps to get it (which I don't mind), and I'd just like to get the thing done asap.  But I just need to have patience and trust in God's providence.

Soli Deo Gloria!

Good News!

We heard from the UCSD Moores Cancer Center, and the review committee agreed that I was a good candidate for the autologous stem cell transplant.  Their procedure is very much like Scripps'.  I'll be hospitalized for 2-3 weeks until my blood counts are recovering, and then I'll spend about 6 weeks recovery at home with frequent out-patient visits to the center.

Scheduling is still not firmed up yet, but probably looking at later this month or early next month at the latest for the transplant.  In the next few weeks I'll be getting a bunch of pre-treatment tests done for the insurance company (to approve the transplant).

Soli Deo Gloria!!

No new news

We met with Dr. Ball, the oncologist at the UCSD transplant center, today to discuss my treatment at their center.  We didn't get any definitive information today.  The doctor will present my case to the department's review committee this Friday, and they'll make a decision about their proposed treatment for my lymphoma.  We should hear something by Monday at the latest.

Meanwhile Dr. Ball's coordinator nurse suggested we should get another PET scan at Scripps, so now we are coordinating that, but our oncologist at Scripps wants to talk to the doctor at UCSD before ordering a scan.

Pray for our patience as we negotiate two medical bureauracies!!  We also pray that we get into the transplant sooner rather than later. A cure is going to require a transplant no matter what, so we are eager to reach that point.   

Soli Deo Gloria!!

Insurance complications

Well, we found out this week that the Scripps transplant center is "out of network" for our insurance plan (Aetna HMO). So my oncologist has to refer me to the UCSD transplant center, since they are the only ones "in network" for my insurance. UCSD has a huge program and I'm sure I'll get good care, it's just the hassle of dealing with yet another medical bureaucracy.  It will push the timeline back a bit. My appointment with the UCSD doctor isn't until March 5.

So, prayers are appreciated, especially for patience and courage on our part, and that the lymphoma not come back while I'm in the process of getting the stem cell transplant.

Soli Del Gloria!