July 16, 2009
Sheryl’s Story
Almost a week ago, I let a rather significant date pass by without mention.
On July 10th, 2008, Sheryl Paige (aka Sheryl Olguin), my wife, was diagnosed with stage three Non-Hodgkin’s Lymphoma.
Amazingly, she found out her diagnosis on her late father’s birthday. He would have been 78.
Sheryl has written about this in her on-line diary / blog. She started this blog on July 19, 2008 and then stopped writing after four entries. The effects of aggressive chemotherapy made it impossible to continue.
These days she’s working on writing the entire story, now that she is a cancer survivor.
She also wrote a chapter about it in the recently published book, “Vibrant Women’s Wisdom.” You can order a signed copy of the book directly from Sheryl.
Here’s what she wrote in her diary (Since this posting is so long, this will be the last one for the week):
July 19, 2008
Learning I Had Lymphoma - Hospital Stay
The worst part about ER is the wait to get in. The triage nurse saw me and sent me back out to wait for a bed. The pain kept increasing, and I sat there doubled over with the worst pain I've ever felt in my life. Worse than childbirth, and constant. Leon held my hand and gently stroked my back and that helped me keep it together. When I was finally called in, the RN could see I was in a bad way and tried to make me as comfortable as possible.
She asked so many questions and I can't even remember them all, but what I do remember was that they had a team of paramedic trainees start my IV, and then they gave me some kind of pain medication 6 times stronger than morphine. It made me nauseous, and I remember having to lay perfectly still because if I so much as moved my eyeballs it made me want to throw up. The pain was eased however and that was a tremendous relief. They gave me zofran to quell the nausea.
I had two really great nurses, a woman (Cindy I think), and then when her shift ended, a man with spiky black hair and piercings. He was a great nurse, and looked like he should play in a rock band.
The ER doctor sent me in for an ultrasound of the gall bladder. I watched the screen as the tech ran the test. It's wild to see what your insides look like. No stones. She wished me luck, I went back to ER, and then was sent to a room on the 4th floor. The trip to the room was too much. Getting jostled around on that bed, the lights, turns around tight corners, the elevator. I lost the cookies on the way to the elevator.
My room was on the 4th floor there at Wuesthoff. The nurses I had over the course of 4 days were all great. Jaya, Joanna, Lisa, and Laverne, and the only name of the aids I remember is Alfredia (pronounced "alfredo" as in fettuccini...). Alfredia was fun, Jamaican, and loved to talk about politics, future plans for her career, and all kinds of miscellaneous stuff. Joanna was there a couple nights and I remember her kindness most of all.
The hospital is not a great place to rest. Between the other patients screaming and calling out for help, my roommate watching TV constantly, the staff taking vital signs, administering meds, and the work being done on the roof, I was only able to really just nap.
I was admitted on a Sunday night. Monday the surgeon met me, conferred with the other doctors and decided that a CT scan directed needle biopsy of the swollen lymph nodes would be the way to go. They attempted to do one on Tues, but my insides kept moving around and they didn't want to pierce the intestines, so they opted to try again on Wed. Wed was successful, and afterwards they sent me home with instructions to follow up with the doctor who'd seen me in the hospital, a prescription for percocet to handle the pain, and told me the results would take about a week to get in.
Leon went to the parking lot to get the van to take me home, but it wouldn't start. He called AAA to take care of the van, and called our neighbor Shannon and asked her to drive me home.
July 20, 2008
Learning I Had Lymphoma - Biopsy Results
Waiting for these results seemed to take forever, even though they came in when the hospital said they would come in. I had called my regular physician's office, and she was out on vacation for the next week and a half. Also the doctor who'd seen me in the hospital was on vacation. I told the woman in his office who spoke with me on the phone I was expecting biopsy results to come in that week and that I'd like to find out as soon as possible, and get an appointment scheduled. She reminded me that the doctor was on vacation and said I should call back in a week when he returned to schedule an appointment and get results. I didn't understand why they couldn't just schedule an appointment while we were on the phone, but between the tiredness and the pain and pain medications, I didn't have the will or the strength to push it.
Leon and I are surrounded with great friends in so many communities. Our friends from church who are part of the medical community continued to call and check up on us. I learned through them that I could simply call the hospital and ask for the pathology report myself. Dr. Rylander offered to have the results sent to him if the hospital wouldn't release them to me.
I called Wuesthoff lab on Thurs morning 7/10 and within 30 minutes the results were sitting on my fax machine. I struggled with that phone call, and struggled harder when it came time to read the report. I wanted to see good news, but feared the bad news that might be there. I had to look. There it was in writing.
Diffuse large B-cell lymphoma.
I was shocked and thought to myself, "well this changes everything."
I called Dr. Rylander, who explained the results to me. He didn't want to interfere with the treatment plan organized by Wuesthoff hospital, but told me that the best oncology group in the county was Dr. Levine's group, and said that if I wanted to talk with them he would arrange it. Of course I want the best, so I took him up on his offer, and within an hour Dr. Rylander called me back and had spoken personally with Dr. Sprawls (an Oncologist in Dr. Levine's group) about my case and arranged for me to seek him that afternoon at 3pm.
Dr. Rylander gave me a great endorsement for Dr. Sprawls. I was highly comforted by this. I later found out that my friend Jen Goldacker (Java Jen) saw Dr. Sprawls for her breast cancer years ago, and she also raved about him, and mentioned another mutual friend that he's also helped.
Leon got home shortly after my calls with Dr. Rylander and I told him the news. He took it hard, but said we would get through this together.
I called Rose (our daughter) and her first reaction was to cuss (I assured her that was exactly what I was thinking too!)I told her as far as we knew this could be treated and that we would do all we can to make it through this. I asked her to pray for this, and to come down from Gainesville to see me whenever possible so we could spend time together. I assured her that she is one of my main reasons for hanging around on this planet. I want to be around to congratulate her through the milestones of her life, finishing college, getting established in her chosen field, marriage, and to spoil her kids some day. There are so many reasons to stay on this planet, and I really don't feel like my work here is done. More on this later.
We saw Dr. Sprawls that afternoon, and he asked if we wouldn't mind waiting a little so he could finish seeing his other patients and then devote as much time to answering our questions as was needed. This sounded good to us, and we thought it was thoughtful of him to ask.
When he got in, we spent at least an hour talking about what my tests said (diffuse large b-cell lymphoma), that it's a non-Hodgkin’s lymphoma and responds very well to treatment.
He told us about a combined therapy that he will use on me called R-CHOP, which combines Rituxan (R), an immunotherapy drug that specifically targets the cancer cells so they're killed off by the body's natural immune system, with Predisone (P), a steroid which happens to also kill lymphoma cells, and the rest of the acronym (CHO) are three chemotherapy drugs that kill fast growing cells. Since the type of lymphoma I have is an aggressive (Intermediate) lymphoma, there is good success at nipping these cells in the bud. The treatment plan will last about 4 months.
Dr. Sprawls as a person is very upbeat and positive, a good listener, has a friendly composure, and includes my whole family in the process.
At the end of our consult he reached for Leon's and my hands, and prayed with us for comfort and that we would see God's purposes for our lives accomplished. It was a short simple prayer that was heartfelt, appropriate, and really comforted me to know that I've got a physician who cares as much about our spiritual needs as the treatment of this disease.
He ordered up some more blood work that would impact treatment - an HIV test, a Hepatitis Panel, a Bone Marrow biopsy to check for spread to the bone marrow, and a PET scan to show where the all the affected lymph nodes are located.
July 25, 2008
Learning I Had Lymphoma - Bone Marrow Test
Let's start with the Bone Marrow Biopsy. Dr. Sprawls did this biopsy himself on Friday morning 7/11 in Weusthoff's outpatient center.
The staff at the center are a great bunch of nurses mostly who've been there for long careers. I always have a chance to interact with them as people which helps me feel more connected to them and this healing process. I always ask how they got into what they do and what they like about their jobs. One nurse there, Nancy, has been there for almost 30 years and loves and trusts the people she works with. It's a great team environment there. That was really encouraging to hear.
After getting me dressed in a surgical gown and taking my vitals, I was wheeled into the biopsy room where the assisting nurse explained the procedure to me, talked with me about playing cribbage (apparently there is a cribbage club here in the area) and we waited for Dr. Sprawls to arrive to do the procedure. She gave me some versed, a sedative to keep me calm, and something else to knock out the pain. I told them that if I started singing not to hold it against me. I'm sure they've seen a lot of funny stuff with sedated people.
The test went off without a problem, and within minutes I was back waking up in the recovery room in the ambulatory care center. As soon as I was able to walk, we checked out. Leon went to retrieve the Van to get me home, but it wouldn't start. He called Shannon, our neighbor, to come pick me up at the hospital, and he called AAA to come tow the car home. Shannon graciously brought me home and waited with me until Leon arrived. Our friend/client Jack Brown took a look at the Van Sat morning, and said the battery was dead, so Leon replaced it that afternoon.
July 25, 2008
Learning I had Lymphoma - Surgeon's Visit
Dr. Majmundar was described to me by Dr. Sprawls as an excellent surgeon without the ego that many surgeons have. Talking to my sister, mom, and others in the medical community they say that surgeons usually have huge egos, which they feel is partly due to the ongoing "hazing" they receive at the hands of fellow surgeons as they're gaining experience in their fields. Dr. Maj (he goes by this for a nickname) is a really nice guy, easy to talk to, and very thorough. He explained how he would attempt a laparoscopic biopsy to get enough tissue for a sub classification diagnosis of the lymphoma, and the alternative open surgery if the laparascopy didn't work. Either way, he'd get the biopsy as safely as possible. He also installed what is called an infusiport. This is a device placed under the skin at the collar bone that enables chemotherapy to be delivered right to the veinous system without having to start an IV every time. They simply inject the drugs right into the port, and they flow right in. It's a cool concept, even if it's "BORG" like implant technology.
Dr. Maj also wanted some tests done prior to surgery, so between his requests and Dr. Sprawls requests I had a day of tests to complete.
Leon was unable to take me to my appointment with Dr. Maj due to a prior commitment to attend Sandy Ferris's dad's funeral. Kevin and Debbie Browne came over, took me to my appointment, took me home, and made dinner for us, and we watched videos all evening. We watched the movie "Emma", and we watched a couple hours of speakers on the topic of post modernism from this past Ligonier’s conference. It's fascinating to me to understand the roots of postmodernism and to see how it has permeated much of our culture from the arts and societal mores, to religion, just as modernism heavily influenced everything in the first part of the last century. I was on pain medication so I confess I may have dozed through a lot of it, but it was still fascinating.
Our dog Abby thought that Kevin and Debbie were both great new play buddies and wouldn't leave them alone. Kevin did his best to wear her out by taking her out for walks and tossing her chew toys for games of fetch, but she still kept wanting to lick or chew Debbie's feet and just wouldn't calm down, so we ended up having to let Abby get some rest time in her crate so we could also rest!
Posted by leonolguin at 09:40 AM | Comments (2)
June 12, 2009
Why PSG?
Sometimes I wonder, “Why did I call this blog ‘Project Studio Guy?’”
I don’t even like being called a “guy.” And I really hate it when someone calls me “big guy.”
But what choice did I have?
Consider the alternatives.
“Project Studio Man” sounds like some kind of super hero thing.
“Project Studio Journal” sounds as boring as a Yanni CD played at half speed.
“Project Studio Person” is politically correct, but exceedingly stilted.
“Ruminations on the Inner Workings of a Project Recording Studio, and Musings on the Music Business in General” may be accurate, but perhaps a tad long.
Other rejected names:
“Studio Stuff.”
“Dog in the Studio.”
“Not a Bedroom Studio.”
“Wanna Make an Album?”
This posting is getting too silly; I’d better stop before Graham Chapman shows up in full British Colonel regalia, and reprimands me sternly.
If you understand that previous reference, you are a silly guy, indeed.
Stop it! It's getting too silly!
Posted by leonolguin at 03:45 PM | Comments (1)
June 04, 2009
Two Blogs Become One
Since the start of 2009, I’ve been writing two blogs, this one and “They Can Still Hear You.”
After much thought I have decided to end TCSHY, and concentrate solely on the PSG.
With the studio work, teaching, and performing I do, along with coordinating the music at our church, I found that I didn’t have enough time to do a thorough job on both blogs.
There was also some overlap between the two. TSCHY was about owning and running a small business, and the PSG often deals with the same thing, albeit with more concentration on the peculiar business of running a recording studio.
Most of you who read this blog have probably never looked at the other one, but of course, I hope that those who read TSCHY will come over here!
No posting tomorrow. Sheryl and I will be getting ready to go to Vero Beach for a two-night stand at the Vero Beach Yacht Club. Yep, I’ll sing a verse of “Mack the Knife” for you! (Sheryl, on the other hand, does not have to sing these type of songs, I have to protect her dignity, you know. She will be strumming some jazz-type guitar chords, and singing some of the cooler songs from the 60’s and 70’s.)
Posted by leonolguin at 10:52 AM | Comments (0)