The Many-Headed Hydra

There is a Greek myth about the hero Perseus battling the Hydra, a monster that as soon as one head was cut off, two heads would grow in its place, and so be un-killable.

Yesterday (Sunday), I took Scott back to the UCSF hospital through the ER by direction of the on-call hematology-oncology MD. Beginning about last Tuesday, he had started to have pain above his left, rear hip bone. Pain and swelling have increased each day until really no longer manageable at home with what meds I have. Very similar to what he experienced last December and January on the right hip.

Seemingly while the cancer in his brain has been getting zapped and killed with the whole brain radiation the past 3 weeks, this very opportunistic Burkitt’s Lymphoma has likely shown up again systemically. The MDs are also very concerned about a possible area of swelling and slight tenderness in his upper left abdomen.

This morning he received an MRI of his mid-section including both hip and abdomen. The docs are waiting for results to determine if he needs any biopsies, so Scott has had nothing to eat or drink yet today in case they need to use anesthesia for these possible procedures. Other scans are likely in order to determine what and how extensive any involvement may be before a treatment plan can be determined.

He is having quite a bit of deep bone pain if he stands or sits to put weight on the hip, and is requiring a fair amount of IV narcotics for pain control. We are really glad to have him where he is, getting the best possible care from medial personnel who know and understand this disease, and are providing the best possible treatment. I came home late last night, and will be here today to take care of several needs, then returning in the morning.

Please Pray

!) For rapid determination of extent and involvement of the cancer return

2) For quick initiation of a treatment plan

3) That there continue to be possibilities for treatment

The Hydra?

I asked Daniel, our resident expert on Greek mythology, “how did Perseus end up killing the Hydra after all?” His answer, “He put the blood of the Medusa (which turned anything it touched to stone) on his sword, and was able to kill the many-headed monster because of the blood . . . “

We have a Great Redeemer who has already shed His blood for our sake, and it is in that blood we will trust, no matter what happens. Thank you all for your prayers, love, and support.

Scott, Lynne, Daniel, and Becky

Medical stuff
This is Lynne, writing for Scott again. It’s Wednesday evening, and he has 2 more Whole Brain Radiation therapy sessions on tomorrow and Friday. We were warned how very tired he would be, and there was no exaggeration in the description of how deep and profound it would be. It literally has been a struggle for Scott to have the muscle strength to get up from a lying or sitting position. Also the (very necessary!) high doses of steroids have played havoc with his emotions, and the combined result has been probably the darkest emotional discouragement for Scott so far in this long and tortuous path.

Once more his hair (the ½-3/4” length that had grown back) is falling out in patches, and he’s getting sunburned skin on his temples, forehead, and scalp from the radiation, BUT his vision is normal, and his eyes appear normal and are tracking together! Yay! He’s so thankful to have his eyesight back and be able to read in order to occupy the long days of no energy to do anything in between long naps. We’ve been told to expect the tiredness to last at least 3-4 days after the last treatment, so hopefully by mid next week, he’ll start feeling stronger.

We got a call today from UCSF notifying us of 2 days of many tests next week on Tuesday and Wednesday up in S.F. Scott will be getting another bone marrow biopsy, a head MRI, a PET scan, and several lab and blood work tests to be sure his heart, lungs, liver, and kidneys are still okay, and that the cancer is in remission enough to proceed with the next step. He needs to be able to “hold a remission” long enough (at least 3-4 weeks) to be able to get to the next step of consolidation (wiping out his immune system with very strong chemo, then harvesting his own brand new stem cells in preparation for the bone marrow transplant (BMT)).

We don’t know for sure, but if all tests check out okay, we’re guessing he may go in for the 3-4 week stay at UCSF for the consolidation process around the middle of October. I guess we’ve learned not to assume anything schedule-wise, though, but we’ll just have to wait and see what direction the trail takes.

Prayer Requests
Please pray for Scott’s strength and energy to return quickly, and for the emotional effects of the steroids to also wear off rapidly. Please pray for all his tests to come back normal and negative indicating definite remission so we can proceed to the consolidation.

Thank you to so many, many of you who have written encouraging notes, called to uplift and encourage us, and have been SO generous with your help, time, and finances. We love you all and are so grateful for your prayers.

Scott, Lynne, Daniel, and Becky.

Well, I’ve (Scott) now completed six sessions of whole-brain radiation. The sessions involve a machine zapping either side of my brain for about 25 seconds. The most recent MRI identified very specifically where the tumor is – behind the eyes – so the radiologist has been able to zap it very specifically (along with radiation to the whole brain to prevent the microscopic re-appearance of this cancer, which it is prone to do).

Originally, the Radiologist was talking 10-15 sessions. But he’s said all along this would depend on how I responded – and so far he’s been very pleased. So my sense is that he’ll quit after about 10 sessions.

From there, it will be up to the Doc’s to decide how soon I’m back at the hospital for my “consolidation” treatment (taking the white cell count to zero and harvesting the newly growing stem cells.

In many ways, this radiation therapy has been very rough on me. For one, it is leaving me extremely fatigued (the chief side effect), so much so that basic tasks become very draining. This in turn is demoralizing – one feels like they are not worth anything because they cannot accomplish anything. Secondly, this is compounded by a steroidal drug (Decadron) that eases swelling and inflammation near the tumor site; the drug wreaks havoc on my emotions and I find myself frequently crying and / or raging angry. Decidedly not myself. Combined it is very discouraging. I have hope tomorrow in that the drug portion gets cut in half to begin gradually weaning me off of it, so perhaps there is relief there. But the fatigue from radiation will only get worse, and I expect to be in a pretty deep weariness hole in a few days. This will be very discouraging, and I would covet your prayers.

Psalm 46

I’ve been working on memorizing Psalm 46 during my 15-minute morning walks. Best known for a couple of verses near the beginning and end (“God is our refuge and strength, an ever present help in trouble. Therefore we will not be afraid….Be still and know that I am God”), what has jumped out at me during the memorization is verses 4 and 5: “There is a river whose streams make glad the city of God, the holy place where the Most High Dwells. God is within her, she will not fail; God will help her at break of day”. Those two verses are, in many ways, unnecessary to the rest of the Psalm, which is describing the world basically going to Hell and falling apart. Yet, right in the middle of the world going to Hell, God is caring for the beauty of his city, and making sure those streams continue to make the city glad. As my own story goes through a very difficult year, it is comforting to know that God continues his ultimate work – this has given me a lot of assurance.

Lynne and I had the opportunity to travel to Bern, Switzerland in 2006. The River Aare flows beautifully through the town, gorgeous in it’s green color. I leave you with this picture of Bern and the River Aare – it’s partly what I picture when I think of God working on his river “whose streams make the city glad”.

Thanks as always for your cares and prayer!

Love, Scott, Lynne, Daniel and Becky

Once again, a change in direction

This is Lynne writing for Scott today. We know you all haven’t heard from us for a while. Is anyone really surprised to hear there’s a new twist, a new roller coaster ride, a change in Scott’s status after all the ups and downs with this disease?

Last weekend, the headaches, nausea, and vomiting began exactly on day 7 of the 7-9 day nadir point after chemo. The vomiting was pretty bad this go round, lasting about 3 days, and Scott dropping about 12 pounds. (He’s still recovering….his energy has been low until today, and he’s been sleeping a lot.) Worse than that, his vision began to regress to prior behavior of not working together, drooping eyelid, etc.

Thursday was our latest consultation was the UCSF experts, and the timing of this visit was pretty wonderful coinciding with Scott’s eye problems – and, on top of that, a follow-up MRI of his head had already been scheduled. So, by late afternoon of that day, we were able to learn that the small infiltration of cancer in Scott’s cavernous sinus affecting his cranial nerves had indeed grown more active since the last MRI. Quickly, the decision was made to give Scott full brain radiation therapy. Why radiation? Radiation can penetrate the blood / brain barrier of the central nervous system more effectively than chemotherapy, so this was a decision to go straight to the big gun and get this thing killed in the central nervous system (of course, radiation has more serious possible long term effects than chemo….more below).

We were very impressed with the speed with which the UCSF staff were able to move and get this in place. “We have an Hematology oncologist we like in Monterey. Could you meet with him at 8:30 AM tomorrow morning?”. Yes, we said, and so there we were at 8:30 AM Friday morning at Community Hospital of Monterey Peninsula (CHOMP). The folks at CHOMP were equally impressive, fitting Scott with a necessary radiation mask to hold his head immobile during the treatment, and getting his first dosage done within a matter of a few hours.

So – our new routine is 2-3 weeks or so of radiation therapy in Monterey. The radiation treatment itself only takes a few minutes, so it won’t be an all-day thing and we’re grateful for that.

This, of course, delays the preparation for and execution of the bone marrow transplant, but a BMT would be ineffective if the cancer is not under better control. We’ve been told to expect Scott to lose what hair he’s had growing back, but hopefully there shouldn’t be problems with nausea and vomiting as side effects. Actually the biggest side effect will be profound fatigue. We’ve even been told by our friend in UCLA’s oncology nurse practitioner program (thanks, Kimberly!) that I’m likely to need to wake Scott up on a regular basis so he can eat to get enough nutrition in to fight this disease.

One of the biggest risk potentials is the possibilities of mental and cognitive changes and/or slowing. We’ve been told that this will likely be temporary, but no guarantees. Please, please be praying that any side effects in this area will be short-lived.

Reasons for thanks

Last Monday (Labor Day), with my brother and sister-in-law in Livermore (thanks Craig and Kim!) doing most of the work, we were able to have a wonderful gathering across the street at the Ponderosa Lodge pool. Daniel was baptized, as he had requested for his 18^th birthday by his youth pastor, Allen Coleman. Scott was very weak from 3 days of not holding anything down, but we were able to get him there by car so he could at least be there for Daniel’s baptism. He had no strength to enjoy the remainder of the pool party/BBQ, but at least he was there for the most important part! Thanks to both Allen and Chuckk, special mentors for Daniel, for being there, and thanks Dave and Irene and family for coming all the way down from Grass Valley to be there.

Believe it or not, we’re actually thankful that when the cancer starts becoming active again, there are definite symptoms. If it was able to advance without symptoms, it might go farther than could be contained or treated. So, we are thankful the changes are observable, and especially that there continue to be treatment options and possibilities. We’re especially thankful that there continues to be hope. Even if eventual healing is delayed, even through all the awful side effects, there is still hope for life. Thank you so much to all of you who have so faithfully upheld us in prayer, love, and support.

A word from Scott

I would be grateful for your prayers these next weeks for 1. the ability to cope well with the extreme fatigue and 2. as Lynne says, being spared any mental /cognitive affects of the radiation. I’m told the affects could range from one time, short lived to permanent loss of function such as quick wit. The thought of losing quick wit really scares me – it would be losing a piece of the real me.

Your support means so much right now. After all the ups and downs, I feel weak, vulnerable, fearful. It’s been a long road, and nearly every day something special happens where one of you kind folks gets divine inspiration and writes a note, or gives a call, or something. These help me so much.

If you haven’t had a chance yet to check out my pride and joy, here’s a link to the slideshow of excellent pictures taken by Peter Thomsen.