Janet's Story - Three Cheers for OHSU
as told by her devoted daughter, Melody
The photo shows the Mitsuyuki family a few years ago. Melody's brother, father, and husband form the back row. The middle row includes brother's wife, Janet, and Melody. The children are brother's sons.
Although Janet's GIST story began back in 2003, this is the tale of her latest recurrence. Following is Melody's account...
I apologize in advance for this mini-novel. With the demands of work and family, the last four months feel like 12. And it took some time to catch up with over 2,100 posts. A month after we returned to Hawaii, Mom and dad bought a condo, and hubby and I helped them pack and move into their new home. With life finally settling down to the normal routine, I want to let all of you know how appreciative mom is for the emotional support and each personal experience we've learned from. We've learned so much from Mom's journey with GIST we wanted to share them with the group with hope that it may help someone in their personal journey. Here is how it all started for us at the end of May, 2006.
Janet Mitsuyuki, my 74 year old mom, and I first went to OHSU from Hawaii back in 2004 to consult with Dr. Charles Blanke. It had been a year after her primary GastroIntestinal Stromal Tumor (GIST) tumor was removed in Hawaii. Mom lives in Honolulu, and I on Maui. Living on different islands is another difficult roadblock when dealing with cancer; so near yet so far.
What we thought was a fibroid turned out to be GIST. This past May (2006), Mom made an appointment with Dr. Blanke, but it wasn't for another 6 weeks. About this time I was on vacation in California when Mom called me to said she was flying to Portland to see Dr. Blanke, and that she needed the surgery to remove the tumor quickly. She found it hard to eat, poop, or breathe. It was now the size of a melon. Mom's oncologist and surgeon at home wouldn't do anything for her. I asked her if she could wait until I returned in a week so I could fly with her, but she told me if she didn't go now, she might not be able to fly to Portland in a week. She was determined to see Dr. Blanke. I reminded her she didn't have an appointment until the middle of June and may have to wait days, maybe weeks, but she didn't care. She said when Dr. Blanke saw her, he'd know her life threatening condition. So she flew from Honolulu and I went to Portland to meet her.
It was the day after Memorial Day. We arrived at Dr. Blanke's office with no appointment his first day back from vacation. After we announced our presence, we patiently waited in the waiting room and after the receptionist had informed Dr. Blanke of our unexpected appearance, she returned saying we could see him the next day. We were so happy. The next day I was extremely anxious; what if he says, "Sorry Janet, you're too far gone and there's nothing we can do for you." When he came into the room he was so compassionate and professional. He listened attentively to mom as she told him of her medical history for the last 6 months. We explained mom's situation to him and he proceeded to examine her. That was the first time I saw her stomach; my 74 year old mom looked 8 months pregnant! After a long dialog between Dr. Blanke and Mom, he left the room. Anxiety set in. When he returned he told Mom that he was recommending her to meet with Dr. Kevin Billingsley, the GIST surgeon. We had an appointment with him in a couple of days. I was elated but still apprehensive.
A couple of days later we met with Dr. Billingsley and his nurse Mollie Kollas. Again, I was impressed with their professionalism and courtesy. Dr. Billingsley sat and listened with attention to every detail mom had to offer. After he examined mom he explained the surgical risks and benefits. He would debulk her tumor and hopefully remove 80% of it. I'll never for get his words, "It is reasonable to proceed with the surgery". Music to my ears! He sent her for a CT scan and we were to return the day before surgery for various pre-op requirements. I could breathe now. Mollie sat with us and explained the pre-surgical routines. Her compassion is to be commended. She was very patient, understanding and answered our every question.
My brother arrived in Portland to be with us the day before the surgery. According to the CT scan, the melon size tumor was now the size of a football. The surgery now came with more risks. But Mom, being very religious, was positive and knew she needed the surgery to live.
The morning of the surgery I was numb. Mom told me that she only slept about an hour. Silent and scared, we took a cab to OHSU to check in at 6 am. Our family in Hawaii, my brother and I were emotionally overwhelmed about the worst-case scenerio. What if she lost a kidney? What if a colostomy was needed? What if she didn't make it through the surgery? We left Mom in the pre-op room and my brother and I went to the waiting room. Every time the phone rang everyone's attention went to the volunteer answering to see if the call from surgery was for them. A few hours passes when Mollie arrived to give us a status. We were surprised to see her; she had taken a special interest in our case and her friendly face was so welcomed. She said the surgery was going well and the tumor was removed. We called it the "evil baby" because of its size. Her presence and words comforted us after hours of uncertainty. More hours passed when Dr. Billingsley arrived in the waiting room to speak to us. His presence alone was comforting, but his smile and words lifted the weight off our shoulders. He removed the entire tumor. He was able to peel it from her colon, rectum, and bladder and to remove her uterus, to which it was attached. He gave us an overview of the surgery in terms we could understand. His words were empathetic and reassuring, his knowledge and expertise impressive. I was so relieved, in my exuberance I hugged him and gave him a high five. Mom would be going to ICU shortly.
Mom was in the ward for 3.5 weeks. Dr. Billingsley's and his team's concern and sensitivity to Mom's daily condition was impressive. Mollie's almost daily visits played a key role in helping my brother and I find our way around OHSU. She took the time to orient us to OHSU properties and amenities that would interest us as we took turns staying with mom 24/7. Mom was in a lot of pain for a couple of weeks. She was refusing regular pain meds because "she was afraid that she would get addicted to it". After the pain management team finally got her to understand (1) a steady amount of pain meds in your system work better in reducing pain and keeping the pain level at a "3" than waiting til it was an unbearable "10" than waiting til it was a "10" and trying to reduce it and (2) it's difficult to get addicted if you're taking the prescribed doses.
Ascites set in a few days after the surgery. We watched her fluid increasing every day. Her legs looked like they would burst if squeezed. It made moving and walking more difficult. She was put on the "leg massaging pads" machine. Later she was put on the diuretic, Lasix.
It had been almost a month since I initially left for vacation so I went home for a couple of weeks and my brother stayed with Mom at OHSU. About the time I returned a couple of weeks later to relieve my brother, Mom seemed stronger and alert. However she got an infection in her colon that abcessed. They had hoped her body would take care of the infection in a normal way, but her temperature spiked over 100 degrees a few times so they decided to go in and drain it. And since she'll be there, they'd also drain the ascites in her abdominal area. The abcess in her colon was drained and the fluid removed from her abdomen measured 3 liters or 6+ lbs! Mom returned from the procedure in a lot of pain. I was running around the hallways looking for her nurse for pain meds, but she was waiting for the orders to appear on the computer. Mom finally got her pain meds and settled down. It was a rough night for the both of us. The next day was better. She got her pain meds on a regular schedule and got the OK to resume solid foods. She had a late breakfast, lunch and dinner. We walked more than before.
She was finally progressing, but seemed a little depressed and defeated. Next day, 5 AM (Boy, she wakes up early). I helped her shower and we went for an early morning walk around the hallways. After a few laps, she complained about being nauseous so we went back to the room (must be the anesthesia from yesterday). They gave her Fenagren (sp?) which knocked her out for 24 hrs! (Note to self, don't let her take Fenagren again). While she was asleep Dr. Billingsley arrived and spoke with me about her post-surgery homework. For a few days he wants her to simulate normal routines like geting in/out of bed without help, eating at a table, and going to bathroom herself. If she can do this, then he'll discharge her on Sunday and we could go back to the hotel. If all goes well at the hotel, he'll see her a few days after that. If she's comfortable and independent, he'll release her and we fly back on Friday!!! This is best case scenerio.
My body was still on Hawaii time because I couldn't get to sleep before midnight and mom would wake me up at 5am to help her get to the bathroom. The sun rises at 5am and sets at 9pm, so I napped when mom napped. Everyone wanted her to walk as much as possible. We took walks in the hallway, mom and her walker, me dragging behind at 1mph. After a boring day of this, I convinced mom to venture out for some sunshine. We found a little cove, glassed in, by the staff elevators which turned into a sun room after 5pm. We would sit there for a spell and talk about things with views of Mount St. Helen and the north side of the University with it's fountain. It's the first time in weeks mom saw grass and felt the sun.
Because she lost one day sleeping, our discharge date was changed to Monday, July 3rd. We expanded our walk and broke out of the ward. Mom walked from her room to the elevator, we got out at the Lobby and walked until she got tired. After that she rode in the wheelchair and I took her to the adjacent building, the newest addition, the Kohler building where we wheeled through a couple of gardens on the patio. Then we went to the Children's Hospital and sipped on a couple of decaf Cafe Mochas from a Starbucks in the lobby! I could see mom's spirits were starting to lift.
OK, now it's discharge day and Dr. Billingsley is pleased with her progress. Her leg swelling has finally starting to disappear. I can see wrinkles on her toes!!! Just a start. Oh oh... OHSU pharmacy doesn't accept mom's drug plan! Leaving mom in her hospital room, I catch the #8 bus downtown to Safeway's pharmacy. Yahoo, they'll fill it and back up the hill I go with a package full of Lasix, Spirolacone, stool softeners, nausea meds (Zofran) and oxycodone. I filled the Oxycodone "just in case". Mom ended up taking Tylenol whenever the pain came back. I "borrowed" a couple of hospital gowns and waterproof pads for the hotel bed, which I eventually returned. Finally discharged we check into the Riverplace Residence Inn. It felt strange going down the hill away from what was home for weeks.
The next day is the 4th of July. I catch the streetcar to Safeway and Walgreen for mom's supplies. In the afternoon, we took a short walk on the waterfront where the annual Blues Festival was happening. We sat on a bench overlooking the Willamette River listening to a bit of great blues until mom got tired. That night I convinced mom to come outside with me for the 10pm fireworks. I figured it would be a nice show and would lift her spirits. I wanted her to go so bad I even told her I'd use the hotel wheelchair to take her out. She said ok. The booms of the fireworks were so loud the sound waves were going right through our bodies. I figure we were less than a half a mile away from the fireworks barge which was parked just off the park hosting the Blues. It was spectacular! It's a different experience when you're that close. Man was it loud and we didn't care. We were so close that each firework seemed to explode right in front of our eyes. We could see every piece of explosive detail. I looked over at mom in her wheelchair and she had her face covered with a blanket, just her eyes peeking out big as could be, staring into the skies. And this went on for another 15 minutes! WOW. Mom talked about it for days.
The next day, I convinced mom to ride in the van for a trip to the Lloyd Center mall three miles away. She was worried about feeling pain climbing into the seat of the van, which didn't happen if she maneuvered slowly. At the mall she found good deals on nightgowns at Marshall's. Just browsing through the racks of clothes made her seem more like herself, someone she hadn't been in many weeks. She said I should wheelchair her since she forgot to put on her abdominal brace. Hmmmm.
The next day we went to OHSU for her final clinical with the Dr Billingsley. Mom's got her chicken legs back. She's didn't use the walker. I think she was trying to impress Dr. Billingsley. He saw no reason for us to stay in Portland any more. After the appointment we celebrated by going to the Rose Garden on the other side of town. Again dragging the wheelchair, mom would walk until tired. I'm starting to get some arms on me.... Now that she hasn't had any pain meds other than Tylenol for a few days, Mom keeps crying… tears of appreciation. She keeps saying she couldn't have made it without the help of my brother and I. She's so grateful for to everyone she's met at OHSU and Dr. Blanke, Dr. Billingsley, Mollie, all the wonderful nurses.
But we're ready to go home. Mom's cat is soooo happy. Miki was getting tired of meowing to mom over the phone. And she's had to put up with Dad for 6 weeks and he just doesn't spoil her like mom does. I stayed over in Honolulu for the weekend to teach dad what he needed to do for Mom.
We know mom isn't out of the woods. The mitotic rate says it all. We must remain vigilant. We can't make assumptions. We've learned a lot from everyone at OHSU hospital. But compared to four months ago, she's now got a second chance and considering the alternative, we gladly settle for that.
The one thing I forgot to mention is to thank everyone for their prayers during our frightening time. I can't emphasize enough about the power of prayer and how it helped us weather through the days of unknown.
Melody in Maui
PS I'll be sending some photos for the Gallery in the next few days.
11/03 dx 6 cm primary stomach GIST, mitotic rate, high grade: 15mf/10hpf. Resected tumor and small portion of the stomach with clear margins.
1/04 Gleevec Phase III Double-blind Study of Adjuvant Gleevec.
7/04 Removed from study because of computer error; was on placebo :o(
12/04 First visit with Dr. Blanke at OHSU
Exon Typing at OHSU: KIT Exon 11, positive for deletion/insertion type mutation
CT quarterly scans NED until Oct. '05
6/05 CT multiple masses in vicinity of uterus likely fibroid disease.
10/05 CT suspicious enlarged lymph node left of stomach and a "5.2 x 3.9 cm represent a fibroid but uterine malignancy cannot be excluded".
11/05 CT guided abdominal biopsy two recurring GIST tumors, one 1.6 cm near stomach, other 2.1 cm near colon/spleen region (related to lymph note left of stomach). OHSU later confirm exon 11.
11/05 PET results confirms just the two hot spots.
12/05 CT scan shows growth of two recurrent tumors now 2.7 cm and 4.0 cm. "Fibroid" now 8.8 x 5.7 cm.
12/05 Start Gleevec 400 mg.
3/06 two recurring GIST tumors now measure 1.4 cm and 2.1 cm (Gleevec working). "Fibroid" now 13 x 11 cm (Gleevec not working on it)
4/06 Two recurring GIST tumors both involuted to low-density masses. "Fibroid" now called metastatic implant measures 11.2 x 12.2 cm
5/06 PET 16 x 17 cm lesion in abdomen extending into pelvis.
5/06 Needle biopsy confirm GIST
6/06 OHSU Debulk of pelvic metastatic implant now measuring 30.6 x 21.9 x 11.1 cm (OHSU later confirm exon 11, mitotic rate 100/50 hpf).
7/06 Start Sutent
7/06 CT two recurrent tumors now 2.7 cm and 4.0 cm (since not on Gleevec for 2 months)