Disqus

Friday, May 30, 2008

Poignant reflections

Last night by the time Susan and I were driving to the store for Adam's birthday party, I had reminded her several times where we were going, where the kids were, and so on - basic "what's going on" stuff. She apologized repeatedly as a sullen mood took over, saying I had not married an idiot but was married to one now. I interrupted her with a reminder that she had no control over what's happened and encouraged her that she's doing the best she can. She just said she's so sorry she's putting me through all of this and she wishes she could be more helpful. I said how thankful I am that she's focused on doing the laundry each day because it's a vital need and was one of my major struggles when she was hospitalized. I'm glad she's motivated to wash and fold and needs very little help in doing it. Susan has been so strong and adaptable; this was a rare moment of discouragement. I reassured her that it's ok, I'll help her with whatever she needs, and we'll get through it together.

This morning as our friend and nurse on-call Alecia visited with Susan, they were talking about her condition in general and following this week's chemotherapy. Alecia has been a terrific resource to us with her experienced RN eyes and ears, and she's also a profound spiritual support. They shared a particular moment of grace as Susan commented on her poor vision and the frustration of limited sight. Then she pointed at her eyes and said, "But these aren't the most important eyes." Alecia asked what she meant. Sue said, "One thing I'm learning is that it's so much more important what you can see with your heart."

Wednesday, May 28, 2008

A trip to Colorado, new chemo begins



Tue 05/27/08
We returned from a terrific visit to Colorado where we attended the wedding of our niece Heather Romberg and her new husband Nathan Tebedo. They had a beautiful courtyard ceremony overlooking a picturesque valley near Palmer Lake in Monument CO. Lexie and I had the privilege of singing our first duet together at their reception. Susan had a bit of a trip-buster brewing on Thursday afternoon due to swollen ankles that raised the concern of blood clots. After a hastily-arranged ultrasound revealed no clots, she was cleared to travel. The swelling is caused by her high-dose steroids.


The whole weekend was another great family event that reunited Rombergs, Shipleys, Underwoods, and others, including lots of young and young-adult kids. We also had some precious time with Susan’s cousin Kelly (O’Toole) and James Dykema and my cousin Stephanie (Joeckel) and Gabe Arcuri. Colorado’s stunning views are everywhere and an obvious reason why so many want to live there, although my uncle Ray Joeckel said he moved from CO to CA after forty years because you don’t have to shovel rain.



I took part in a couple of “how’s it going?” conversations concerning Susan’s condition, one with Dwayne Underwood at Brian & Nancy’s and another with Stephie and Gabe on Sunday at their home in Brighton. Dwayne happened to be in LA the week after her first surgery at LB Memorial and spent many hours over several days in attending his lifelong friend. My cousin Stephie and Susan are both breast cancer survivors and share a special kinship in their experiences. It was good to be connected with them again. We’re so grateful for their love and support.

While we were in Colorado on Saturday, I received a call from Floyd DeBoer letting me know his wife Joanne’s brain cancer has continued to advance. She is on hospice care and may pass away any day. Floyd thanked me for our calls and visits and wanted to let me know how much they helped Joanne and him. He said she’s sleeping most of the time and not able to communicate much. He said even in this state she’s still here, and he’ll miss her terribly when she’s gone. We prayed together on the phone and I hoped we could see her at least on more time. Susan and I were able to visit them tonight, meet some of their family and pray together. We were so impressed to see how Floyd is trusting God with the outcome and how the peace of Christ is present with them for strength.

Wed 05/28/08
This was a big day scheduled for Susan at UCLA with a 7:30am MRI, a 9:00am blood draw, a 9:30am neuro-oncology visit, and an 11:00am chemo infusion. The day went well overall with good MRI results and a smooth chemo infusion. The nurse couldn’t get any blood return from Susan’s new port catheter, so we had to revert to a stick in the arm from the phlebotomist – a point of confusion for Susan since the reason it was implanted was for blood draws and infusions. We were told that once in a while a new catheter doesn’t work properly the first time. Later, a nurse got it flowing both ways, so we should be in good shape for next time. The good news from our visit with Dr. Nghiemphu is that the tumor has not grown since over the past month. The high-dose decadron has done its job to counter swelling, but it’s only a stop-gap measure until the CPT-11/Avastin therapy begins to work.

The chemo infusion is quite the process – saline to flush the line, heparin to prevent clotting, Zofran for nausea, and then a bag of Avastin followed by a bag of CPT-11. The whole deal takes about 3 hours. We were told to watch for possible side effects like bleeding and high blood pressure with Avastin and nausea and severe diarrhea with CPT-11. Both drugs can lower blood counts because the production of blood in the bone marrow gets suppressed. Fewer white cells (neutropenia) compromise the immune system and can lead to infection; fewer red cells (anemia) can increase fatigue; and fewer platelets (thrombocytopenia) prevent clotting and can lead to bleeding. Now we appreciate how mild the side effects of the oral Temodar were. Aside from the fact that it cuts off blood flow to tumors, one thing I like about Avastin is that its generic name (bevacizumab) reads about as easily backwards as it does forwards (bamuzicaveb).

In a surreal moment on the 405 freeway near Culver City, John McCain and I waved at each other today. Traffic was crawling on both sides of the freeway as we moved southbound in the left lane at about 4pm. I saw a CHP motorcycle escort creating space in front of some vehicles across the low wall in the opposite northbound lane. Knowing McCain is in LA today, wondered aloud to Susan if it could be his motorcade. I lowered my window and we slowly passed several CHP and dark sedans filled with serious-looking men in suits. In a moment, as we paused next to a Chevy Suburban without darkened windows, I found myself exchanging glances with the candidate behind our respective sunglasses. I waved at him. He waved at me. Then we moved along. A charter bus brought up the rear of the procession. Only in LA, I guess.

We were so saddened to get an email from Jayne Nord today saying Jeff’s brain tumor has continued to grow in spite of the latest chemo treatments and there is nothing more the doctors can do. They are recommending hospice care for Jeff and have estimated his survival at a couple of months. This news just took our breath away. It’s just crushing. We love our friend Jeff and his wife Jayne and their children. We commend them to God while continuing to ask for a God-glorifying, miraculous healing if that’s His will. Even though heaven is far greater, it’s hard to accept the end of the fight for this life. We pray for mercy and peace.

Wednesday, May 21, 2008

Pushing through a bumpy week

Sun 05/18/08
We returned from a weekend in the mountains at our family cabin, the boys and I doing our annual raking and leaf removal for fire safety while my mom took care of spring cleaning and making meals for us. We had good family time with work, relaxation, and lots of jokes. Susan did well at the 5800’ altitude in a good test run of our trip next week to Denver for our niece Heather’s wedding. Her surgery site is healing well. Sitting outside on Saturday at dusk, I had an up-close visit from a lone coyote who was ranging among the cabins probably looking for a meal (perhaps a tasty family pet) and walked past me in the trees about 40 feet away. It was a good-sized, healthy-looking animal and made me glad we take precautions in keeping our dogs secure. It reminds me of when we went to the zoo and I spotted a leopard. No I didn't – they come that way.

Susan and I sat on the screen porch for a while this morning watching the blue jays and hummingbirds at their feeders when I asked how she’s doing with her recent tumor re-growth. She said she realizes the outcome is uncertain and she doesn’t know how long she has to live. She said she wants to live, but has been troubled by not knowing what will happen. It’s been a tough adjustment for both of us as we’re facing the hard facts of brain tumor progression after having months of stability. She’s going to keep doing her best to function in every way she can and trust God for the future. We’re glad He’s in control, especially since it’s clear we can control so little ourselves.

Mon 05/19/08
I walked into the kitchen this morning after Susan had been up at 5:30 helping Austin get ready for school and could tell she was having a tough start. She was staring into the open refrigerator and couldn't remember how to find the milk. She said she feels disconnected from real life, like she’s not herself anymore and she’s slipping away. Even the activity on talk radio seemed to her like it was happening in another world. These were startling words for me to hear and made me think we need to move more quickly to start her chemo or at least have another MRI right way. I spoke to Dr. Nghiemphu who suggested we go after brain swelling by increasing her decadron to an additional 4mg in the morning for a total of 12mg daily. If she doesn’t improve, we’ll take further actions. Thankfully, she was feeling better by the afternoon.

Tue 05/20/08
We had another follow-up visit today with Susan’s radiation oncologists at Long Beach Memorial who administered her radiation therapy in October. Dr. Syed was concerned about her recent tumor progression. While he deferred to UCLA’s protocol of CPT-11/Avastin chemotherapy, he offered some alternatives like gamma knife radiosurgery or pursuing another actual brain surgery with Gliasite implants for internal radiation therapy. Once again, the brain tumor patient and caregiver find themselves in a tenuous spot – we’re medical novices trying to negotiate decisions offered by well-meaning experts in a complex, life-and-death situation. In talking to Susan, we realized a radiation oncologist will turn to his toolbox (radiation therapy) for his preferred treatment. Is that enough? We feel the neuro-oncologists at UCLA have a deeper toolbox (including radiation therapy), not to mention the fact that they treat brain tumors exclusively. We’d rather keep Dr. Nghiemphu and her team in the driver’s seat.

Today we learned Ted Kennedy was diagnosed with a malignant brain tumor following his recent seizures, bringing the brain cancer world into the international spotlight. We certainly identify with what he and his family must be experiencing this week – the weight of the news and the beginning of the journey. What’s weird – when I heard the news I thought how tragic, how devastating, almost not remembering what we’ve been going through for 11 months. The whole thing is a head trip.
Tonight I talked to my brother Jon in Colorado after a bit of a lapse since our last phone call. I found myself summarizing Susan’s latest developments with a bit more perspective than I’ve had recently – the tumor growth, the failed chemo attempt, the port catheter, our hope the new treatment will work – and if or when this second line of treatment doesn’t work, the next steps involve more creativity and uncertainty. Ultimately, if she’s going to survive, it’s up to the Lord. We keep praying.

Thursday, May 15, 2008

The port is in place

Susan is now the proud owner of a BardPort® Plastic Single Lumen Percutaneous Introducer System with Attachable Open-Ended Silicone 9.6 French (Product ID – 0602680). Woo-hoo! She’s always wanted one. And it fits perfectly – right in the jugular vein. It's a great complement to last November's lumbar shunt. It doesn't take much to accessorize, ladies.
Her surgery went well this morning with the help of the caring doctors and nurses at UCLA Surgery Center. It’s quite the outfit at 200 Medical Plaza where they had 40-50 outpatient surgeries scheduled today alone. The only trying moments I witnessed were waiting for the anesthesia nurse to get a vein for Susan’s IV. The dear angel gave her a local anesthetic so it didn’t hurt while she fished around. After about a dozen attempts at various angles, the needle found its target. The nurse thanked God.
All in all, it was a smooth operation with no complications. We were so impressed with the terrific people on the surgery team. They truly care. Aside from being tired, Susan is doing well and has little pain. Her various dressings and steri-strips will come off over the next days and weeks as her stitches dissolve; paving the way for the chemo treatment she needs. We thank god for another important step out of the way.

Wednesday, May 14, 2008

Port catheter procedure Thu am

Susan has been scheduled to have her port catheter implanted early tomorrow morning. The port is a central line inserted into a major vein with a small reservoir placed under the skin. The reservoir has a silicone rubber cover that can be pierced repeatedly and seals up afterward, and can be used to draw blood and administer IV chemotherapy. Since it’s contained under the skin, it has a lower risk of infection and requires very little care compared to the PICC line like she had last fall that has external connectors. The line is placed during a one-hour outpatient surgery under sedation and local anesthetic. I’ll find out how long it can remain implanted – I think it’s a long-term device. There’s some risk of clotting that can be corrected with medications (anti-coagulants) injected into the port. We’re looking for ward to a smooth procedure and to the end of vein-searching arm sticks.

Tuesday, May 13, 2008

No chemo today due to vein trouble

I went with Susan to her vision therapy appointment this morning, where her therapist (Chris) said she’s been making decent progress. We’re hoping she makes continued improvement over time. One exercise Susan’s done the past few sessions is playing solitaire since it helps her scan the visual field and incorporates memory.

Today’s clinic visit at UCLA was a blood-dud. Susan had a pre-chemo blood draw at noon and amazingly, the phlebotomist found a vein in her arm on the first try. We went back to the clinic at 2pm for her scheduled chemo; but the nurse had trouble locating a vein. She used heat and a tourniquet and poked her once, but the vein didn’t hold up. Then she summoned the staff sharpshooter who is the expert for “hard sticks” like Susan. With her right side unavailable due to risk of infection after having a lymph node removed during her mastectomy, Susan’s left arm has been stuck dozens and dozens of times, leaving her veins quite unusable, as we discovered today. After more heat, tourniquet, and massage, Nikki the sharpshooter couldn’t identify any vein that might be useful for the chemo infusion. With Susan’s arm bulging and purplish from the tourniquet, Nikki said there was just no reasonable target and didn’t want to stick her a bunch of times. After consulting Dr Nghiemphu, she’ll be scheduled for a minor surgery to implant a central line with a port located under the skin that will be used for blood draws and infusions. It will be good to have since it will solve the whole hard stick issue, and will be better to have it implanted before she starts receiving Avastin since the drug can cause bleeding and complicate a surgery. She’ll need to wait about 10 days after the procedure to have her first chemo – we’ll pray there’s no tumor progression in the meantime.

We talked today about Susan’s lingering discouragement since her brain swelling episode began last month. After a season of overall progress, she’s realized she may not get any better than she is right now. She wants to see better, she wants to be stronger, she’d love to return to work – she just wants to get back to normal. But since the future is uncertain, it’s been weighing on her. I encouraged her that she can regain her momentum. She agreed small steps each day or weekly will be great progress. She is still resolved to trying her best. I’m glad to see her focused on being a mom, getting up early to help get the boys ready for school, and doing what she can to keep the household running smoothly.

We had time for lunch at Junior’s Deli on Westwood Blvd as we’ve done several times over the past six months. It’s one of the great LA eateries, a cultural landmark, and was the site of a memorable midnight dinner for Susan and me after seeing Les Miserables at the Shubert in Century City on Good Friday in 1989, about six months before Lexie was born. Today we were working on our respective salad and clam chowder when I looked to my left just as Mel Brooks came in the room with a friend. In that moment I had trouble with two images clashing in my mind, trying to reconcile the gibberish-speaking Indian chief in Blazing Saddles with the elderly man walking toward our table. He’s an energetic young 80s who knows the staff by name, orders without a menu, then gets dessert first and sets it aside. We enjoyed hearing his familiar, hoarse voice with the Brooklyn accent and hearty laugh. I was going to write "we had lunch today with Mel Brooks," but then I remembered name dropping is very pretentious. Arnold Schwarzenegger told me that.

Sunday, May 11, 2008

Easing symptoms, waiting for new chemo treatments

Susan has been feeling better in general over the past week, although she’s been tired and has had bouts of increased confusion. She’s eager to begin her new chemo combo and achieve good results. Her vision is as poor as ever and remains her greatest frustration and a continual focus of prayer aside from healing of cancer and its effects.

We enjoyed a relaxing and family-filled Mother’s Day a beautiful and heart-rending morning at Sunday school and church, then lunch at Randy & Dorothy’s. The past couple of weeks have been hard on both of us as Susan has felt lousy after doing well for so long. The see-saw nature of her illness can be exhausting. We continue to find our strength in the goodness of the Lord, the beauty of His people, and in His presence as He meets all of our needs each day.

One astounding new gift is our bathroom makeover. We had begun doing some needed home improvements several years ago, but drained our cash for Susan’s breast cancer medical expenses and have been living with unfinished work, peeling paint and absent baseboards since then. Our loving friends the VanderMeers and Wybengas stepped up and offered a business proposition we couldn’t refuse – they and their mini-church want to fix up our home. John VDM the painter and Mitch W the handyman started with our larger bathroom and transformed it to a place of beauty in quickly and smoothly. It’s unbelievable – it looks terrific and meets a huge need for us because a project like that was so far out of reach right now for me. I wish I could more fully express how great it feels and how thankful we are.

Sunday, May 4, 2008

Improving symptoms

With several days back on decadron, Susan’s brain swelling seems to have eased. Head pain has greatly improved – she hasn’t needed any pain medication since Friday. Her memory and word finding are also doing better, although she’s not quite back at the excellent levels of a few weeks ago. We expect to get scheduled for her first CPT-11/Avastin infusion soon.