Friday, February 29, 2008
by Shauna Berglund-Immel
It is here
That I dwell.
On the outskirts
But with one toe in
Like testing the bathwater.
Close enough to smell
Close enough to hear
Close enough to see
Close enough to feel
Close enough to taste
Close enough to fear
It is here
That I dwell.
This is a poem I wrote on Wednesday 2/28/08 at my Writing Around Portland workshop (http://www.writearound.org) for women with cancer. Our writing prompt was to read 4 poems and then take a line or word from one of the poems as inspiration for our writing if we chose. I chose the phrase "The Valley of the Shadow of Death" from "The Line" by Sharon Olds.
by Sharon Olds
When we understood it might be cancer,
I lay down beside you in the night,
my palm resting in the groove of your chest,
the rachis of a leaf. There was no question of
making love: deep inside my body that
small hard lump. In the half-light
of my half-life, my hand in the beautiful
sharp cleft of your chest, the valley of the
shadow of death,
there was only the present moment, and as you
slept in the quiet, I watched you as one watches
a newborn child, aware each moment of the
miracle, the line that has been crossed
out of the darkness.
I can't tell you how many beautiful and moving pieces came out of the women that day. They all touched me deeply and spoke to me in some way or another.
Some of the other writing prompts we've done since we started were:
2/13/08 Write a valentine to yourself or "I come from..."
The Permission Slip
by Shauna Berglund-Immel
you have my permission to put yourself and your health first. To love yourself enough to make yourself a priority. To nurture and care for yourself. To make and take the time to fully and completely love yourself. For only through taking care of and loving yourself can you fully take care of and love your friends and family. You have my permission to treat yourself like a god/goddess. My gift to you this Valentine's Day is just that. Permission to think of yourself. To be selfish. And in this gift you will find healing. And in healing you will find love. Love of yourself. Love of your body, mind and spirit. Love of your being. And in that you will find the gift of feeling well. Feeling good. Energized. Happy and content. In control. And that in itself is a gift. To feel any sense of control at all in this crazy life infested with cancer.
2/20/08 "On this lunar eclipse..." or "The Moon in Me"
The Moon in Me
by Shauna Berglund-Immel
The moon in me glows luminous and bright as it orbits around my heart, lighting the way for hope in the darkness that engulfs me. It casts a glow that the cells inside of me can see to find their way as they work on healing me.
For this next assignment, we chose a photo from a pile of photos and we wrote from the perspective of the character in the photo or we could use the prompts "On that day..." or "When I awoke". I chose a photo of a big black and white dog wearing a red sweater.
The Little Girl and I
by Shauna Berglund-Immel
The things I must endure just to get outside and for for a walk. At least red is my color. It goes fabulously with my black and white coat. And my big brown puppy dog eyes. My name is Scout by the way. I'm a 3 year old part Great Dane, part Springer Spaniel or something. I have 4 humans, 2 full grown and 2 little humans. Although one, an 8 year old female, acts more like a puppy than I do. We have so much fun together. We're best friends, the little girl and I. We love to play tug of war and keep away with my favorite ball. The one that doesn't squeak anymore because I chewed it up the first time I played with it. My little girl shares her twin bed with me and doesn't mind that I spread out and hog most of it. I'm the first thing she sees when she gets up every morning and the last thing she sees when she goes to bed each night. For her, I wear the red sweater.
"What you should know is..." or "This unchartered terrain..."
This Unchartered Terrain
by Shauna Berglund Immel
The unknown scares me. I'm the type of person who likes to know what to expect so I can plan, schedule and organize accordingly. Managing a family of 4, plus a live-in mom, a dog and a bird takes a lot of organizational skill and artistry to pull off. All of the plans and organization I've made for the future don't apply anymore. For "we" have cancer, and it's an unchartered terrain for all of us.
2/27/08 "When spring comes..."
For this assignment we all completed the phrase and then we combined them to form one long poem about what spring brings. It was fun to hear the different perspectives.
When Spring comes...we shall dance among the flowers.
Here's another poem we read in class (I got to read it outloud to the group!) that I wanted to share:
"Hope" is the thing with feathers-
That perches in the soul...
And sings the tune without the words-
And never stops - at all -
by Emily Dickinson
I'm really enjoying this workshop and look forward to it every week. I just wanted to share my writings here.
I'm processing what my oncologist said on Monday and the results of my latest CA125 (93. up from 34 (normal range) from Feb. 6th in Reno). I meet with my new oncologist (a woman, Dr. Lyset) on Monday. Elizabeth offered to go meet with her with us. She's been our medical interpreter and we appreciate her knowledge and empathy so much. She always thinks of good questions to ask and explains things to us in terms we can understand. I have been in a mood all week and need to process everything before writing an update here. So give me a few days. It does look like chemo is a need again with the spike in numbers. Although I seem to recall reading something in the Reno clinic literature about that happening at first, either with the polyMVA or the Salicinium. That it is known to get worse before it gets better. So I need to get ahold of the doctor in Reno before meeting with my new oncologist on Monday. I just feel so discouraged. Stupid cancer keeps chapping my high. I'm starting to feel like I'm fighting a war I know I can't win and how long can I keep fighting before I can fight no more? anyways, let me sit on it and i'll update later.
thanks to everyone for being here for me.
Sunday, February 24, 2008
spencer got glasses this last week. he's looking very studious! i need to post a photo of him. he's always struggled with migraines and so i took him in to the doc and they tested his eyes. he was borrowing owen's at school to see the boards. they also want to do an MRI on him because the doc thinks a couple of things are going on, not just the glasses.
kaelin got her cast off the week i was coming home from reno. they xrayed her hand and it's still not healed, so 4 more weeks without sports. but without a cast. she's already fallen several times on it during tag at recess and PE. i can't keep that girl down! she missed her entire hoop season and competition season for gymnastics (we sure had fun at nationals in boston last year!) and i'm bummed! (she's not! LOL). she can't wait for soccer. she lives for soccer. and we love to watch her play! she's going to play U11 this spring. she's going to be 9 in april. she plays up on a team of mostly 4th graders and they play up a year, so she's playing up a couple years. she's just stronger and faster and more coordinated (thanks to gymnastics!) than most kids in her age group. she needs the challenge and competition of the older girls.
spencer played in a chess tourney this weekend with 3 other kids from his class. they got 4th place out of 14 teams. he plans on running track in the spring. that's a new one for him. he hates to run! but he dropped out of classic soccer and basketball this year. trying to drop out of violin but i won't let him drop everything! he's spending a lot of time on homework and wants to pick up electric guitar and go back to martial arts. he's an orange belt but hasn't done it for years. just more running around for me!
dave's team (the 3 time defending state champs the southridge varsity girls basketball team) went 10-0 this season in league and are getting ready for the playoffs that start next week. the real estate market has been really quiet as everyone knows. but competitive edge basketball and private lessons keep him busy.
i'm meeting with my oncologist tomorrow at 2pm to update him on my trip to reno (he doesn't know i went!) and to figure out a plan. my doc retires in march, so this will be my last meeting with him i'm sure. i'm hoping he can reccommend someone good. i'm still going to my support group on wednesdays (went to another memorial service today for a classy lady that passed away from stage 4 breast cancer) and i joined a writing around portland journaling class that meets right after my support group. http://www.writearound.org i really enjoy the ladies and activities from both groups. my hair is starting to grow back in. i have a 5 o'clock shadow on my head and brows! lol dave prefers me bald, without my wig. he likes the natural look of bald and hats. so i've not worn my wig since i've been home. i'm going to start working with my trainer again and once i meet with my oncologist, may talk about going back to work. i just need to figure out how to balance everything. i'm going to try hiring a housekeeper to come every other week to help me with my housework so i can focus on other things and not my to do list. now to hire a chaffeur for my kids. lol
ok, this was supposed to be short and sweet, but it's a rambling novel as usual. i will post an update once i meet with my oncologist tomorrow. my OHSU med student is going to meet me at the doctor's office. I'm a patient teacher again for the Living with Life Threatening Disease class in the Ethics Center at OHSU. It's been a great experience and I've been blessed with two fabulous students so far that I enjoy very much. Jenny randomly selected my name out of a hat and it just so happens she lost her mom to cancer when she was 1o. So it's a good pairing for us both. I am learning as much from her as she is from me. It's so helpful for me to hear the child's perspective and to see how well she turned out, despite the physical absence of her mother. It's pretty powerful.
Thank you for reading this far and for being patient with me while i've been drowning in my crazy life.
Thursday, February 14, 2008
There is no one quite like you. You know what you want and when you want it. We are so much alike you and I. Yet you have so much of your daddy in you too. You are confident in your own skin. You are full of determination and drive, always striving to do your best, no matter what the task. You are sensitive, kind and loving with a big huge heart and a hug to share. I have learned so much from you about life and myself and am so proud of you.
p.s. I love you!
You have always been such a happy little guy. You are just happy to be wherever it is you are at the time. You've always got a smile on your face and in your heart. Even when you're not smiling, your eyes are. You love to joke and laugh and you have quite the imagination and sense of humor. You are so well liked by everyone you come in contact with. You are a pure joy to be around. You have such a soft, caring, sensitive nature and treat everyone as equals. I am so proud of you!
p.s. I love you!
For my children:
I love being your mom. My idea of a perfect day is just watching you explore, learn and just be. Whatever it is you're doing. I don't want to miss a single second. I love that the two of you are not only siblings, but best friends as well. I never imagined that I could love this much or this deeply. Ther love I feel for you is so powerful and awesome it takes my breath away. You fill me with such joy, love, happiness and pride. You amaze me. Thank you for making me a better person.
p.s. i love you!
I knew I was going to marry you the very first moment I laid eyes on you. You were my missing piece. We have so much in common and are so very much alike, yet you are everything that I am not and you complete me and make me whole. I feel very fortunate to share a love so pure and unconditional with you and I am so very grateful for the precious gift of children that you have given to me. You are a wonderful friend, partner, husband and father.
p.s. i love you!
For my friends, family and community:
Thank you for lifting me up and being there for me for all of these years. Thank you for the strength and hope and love. For the kindness and generosity. For making my life so full and rich and fun.
p.s. I love you!
Monday, February 11, 2008
Like a miniature choreographed dance, Elizabeth Bwayo’s hands move a pair of knitting needles through a strand of yarn. She directs the blue and brown strands into a duet that spirals into a shape of a hat. It is a craft that reveals her talent and a practical way to raise money for medical bills.
One year ago Elizabeth, her husband Job Bwayo and AIDS volunteer Carol Briggs were caught in a carjacking outside Nairobi, Kenya. Their car was forced to stop by a brutal teenage gang. They opened fire, killing Bwayo, and gravely injuring Briggs and Elizabeth. Both women were shot in the face. Briggs also took a shot to her hand. Kenyan surgeon Eric Kahugu performed multiple operations on both women for over a month. By Easter, both women were in Portland, Briggs with her daughters and Elizabeth with her sister, Grace Kuto. Dr. Kahugu traveled to Portland to celebrate the holiday with his two patients and their families, who were all becoming friends. The relationships were of greatest importance to Elizabeth as she mourned the loss of her husband.
The violent incident robbed Elizabeth of her husband and the world of Bwayo’s renowned work in AIDS research. Bwayo, considered Kenya’s leading HIV researcher, earned global respect with his research on natural immunity to AIDS. He helped build the Kenya AIDS Vaccine Initiative (KAVI) with a team at the University of Nairobi. It is part of an international mission to develop an AIDS vaccine. Bwayo’s work focused on finding the key to immunity to generate a vaccine. By the time an individual develops AIDS, the virus has already attacked the immune system, leading each AIDS patient to a slow death. A small number of drugs, referred to as cocktails because of the combinations, can at best extend the patient’s life. But, there is no cure.
Surviving an Internal Attack
It would seem a most unlikely connection from AIDS to cancer. Yet each attacks and mutates cells to slowly kill a person. There is ongoing research and development of drugs and other medical treatments to prolong life. But again, no cure.
When Shauna Immel was told she had cancer, it had already advanced to stage four. Surgeons removed two huge tumors in a long protracted process to stop the cancer from spreading. They were so ugly, but Shauna was really proud to show them as she slipped in and out of sleep the day after her first surgery. They were, after all, no longer inside her. The next stage of treatment included hope as the fight began against the cancer.
Chemo treatment soon followed. Shauna’s doctors could not determine the source of the cancer, so they prescribed a treatment plan hoping to kill off the disease. Through the Monday sessions, diet overhaul and life changes, her family and friends would come together much as Elizabeth’s and Brigg’s families did for them.
The first round offered hope as Shauna began to regain her strength and her sparkle. It showed in her face and in her work. Like Elizabeth, Shauna creates beauty with her hands. Her tools include paper, glue and a camera. With each shot, she shares a special talent to capture moments of those around her that would otherwise be left for random recollection or fade from memory.
Scrapbooking is a way Shauna can keep each of those moments and thoughts to share with others—especially her children. Spencer and Kaelin may wonder why their mother would go to such lengths to document their lives, but those pages contain more than embellished photos. It is a way Shauna can share her thoughts and love. It has become even more important as she grapples with an uncertain future.
A Second Round
After the first round of chemo, Shauna’s future looked brighter. Everyone around her cheered at hearing the news that the cancer was in remission. Last summer, tiny signals re-emerged that the cancer was still there, still attacking her with its stealth-like tactics. Shauna’s doctors told her that they found “suspicious” fluids. The news was a blow to everyone, but it re-invigorated her family and friends to band together even stronger. Money was raised to send the entire family to Disneyland in September. Treatment was postponed until after the holidays. But, there were no more magical places to go to escape the disease.
Shauna’s doctors have yet to locate the source of the re-emerging cancer. Instead, their clinical assessment placed Shauna in the harshest chemo treatment in an attempt to stop it. It is physically difficult to go through the treatment, but more difficult to emotionally process it. This round appeared to treat one part of Shauna and not her as a person. As such, she didn’t emerge with the same fight and hope.
Yet hope has a way of happening. On December 1, an African Benefit Dinner was held at the Tigard Community Friends Church to raise funds for Elizabeth. Her sister and Briggs are members of the church. The event featured dinner, music, Kenyan artifacts and Elizabeth’s knitted creations. Family, friends and members of the local AIDS coalition listened to singing and violin music as dinner was served. Across the room, Elizabeth sat behind a table showcasing Kenyan soapstone and her knitted scarves, booties and hats.
Elizabeth had been shot in the mouth and even after numerous surgeries, eating was difficult. She spent the first months after the shooting getting her only nourishment through a feeding tube and more months on strained foods. Yet, Elizabeth wasn’t focused on food. She wanted to greet each person who attended the benefit to thank them.
Of all the beautiful knitted items, one hat stood out. Maybe because it was unlike the others or maybe the colors stood out. Either way, it was special. In a few days, I would understand why. I left with amazement at Elizabeth battling her loss and injury with the same grace and strength as her husband did in his work with AIDS. Elizabeth, in her ever gracious style, took my hand to thank me. I left with the hat and hope.
An Unexpected Connection
Shauna knew her hair would begin to fall out 14 days after the first session in this round of chemo. She managed through the week-long sickness, which is much like a very bad case of the flu. The physical side affects would then subside until the next treatment, but Shauna questioned if it was the right course to take. It was difficult to remain strong when treatment becomes a process, not a course of action.
Shauna struggled over whether she should continue the chemo round. Then, she heard about a program in Reno, Nevada, which used a German treatment that would battle the cancer and heal the person. It looked more promising and offered her a renewed sense of purpose. Her decision did not prevent the fact that her hair would fall out after the first chemo round. Wigs were not going to be an answer, so it was either going bald or hats.
A little more than a week after family and friends gathered for Elizabeth’s benefit, Shauna’s friends and family gathered for a hat party. Inside the festively-decorated home of close friend Paris Dukes, Shauna looked radiant. The guests reflected Shauna’s focuses in life—family, work and scrapbooking. Everyone gathered next to the Christmas tree with Shauna sitting in front of wrapped packages and paper tote bags. Each one was filled with a hat. She would open each one as the presenter of the hat would give her words of encouragement, share funny stories and describe the reason for the hat. Then Shauna would place the hat on her head and pose for a photo with the presenter.
When my turn came up, I was both excited and nervous, for inside the paper bag was Elizabeth’s hat. It represented more than head covering and more than a handmade gift. For me, this knitted hat represented strength and survival and now it would connect two beautiful women who both must battle to survive vicious attacks. The gun is just as ugly as a disease. One may quicken death, but both seek to destroy life. And too often we are helpless to protect against either.
When Shauna placed Elizabeth’s hat upon her head, I told her it was a hat of survival. It is a gift of hope from one artistic and graceful woman to another. I was merely fortunate enough to connect these two through a simple hat.
It’s the giving of one to another that knits us together.
By Sherry Harbert
January 19, 2008
Sunday, February 10, 2008
Saturday, February 9, 2008
Friday, February 8, 2008
The good news is that they got my CA125 results back in and they are down to 34 now! Normal is 30 or below. So I've still got a ways to go, but it's a heck of a lot better than the 74 it was at on December 31st! I did have another round of chemo since then before coming to the clinic and infusing with the salicinium for 3 weeks though. So part of that decline could be contributed to that. After my first round of chemo, it went from 96 to 74. So it's moving in the right direction. That's totally good news!
The bad news is that they still don't have my German Test results back. They did get Laura's back, and she had hers taken after mine. But apparently, they are still working on mine, since it's so sneaky and no one knows what kind of cancer I have to begin with. So they are being really thorough. I should get a call or email next week. I'm curious to find out what they discover. This test should tell me what kind of chemos my cancer is sensitive to. It will list what chemos would be beneficial, which would be ok, and which to avoid, along with some things you can do alternatively. They test the cancer cells in the DNA for sensitivities to different chemos. It's a very expensive test.
Now for the ugly...my port is infected. Not sure how bad yet. But they put me on an antibiotic and gave me some antibiotic cream and they scared the crud out of me by listing all of these scary symptoms and if I have any, I'm to call my doctor and have him meet me at the hospital immediately. It would be really really bad if this infection compromises my port. I don't want to lose it and have to have another implanted. So that sucks.
We spent more time than we thought at the clinic today. Everyone loved my hair, but I think they loved my hat even more! I wore the new brownish one that has the sparkly band. Everyone asked me where I got it (Burlington Coat Factory!). We stopped at Wig World on the way home and I got a short brown wig too. We didn't get a chance to take any photos yet though. Paris picked up one of those long fake ponytails for her horse. That was a first for the lady in the store! LOL We ended up going to see "27 Dresses" tonight. What a cute, darling chick flick.
We're all packed up and ready to go. Need to leave about 9am and go return the rental and check in for a 1145am flight. Should be arriving in Portland about 115pm. What a quick little trip. And right now the fairs are unreal! $49 each way from PDX to Reno on SW! I don't want to leave! Maybe I can stay and people can just come visit me once in awhile! I'm going to drop Paris at the curb and drive off! Bet she's never had anyone ditch her at the airport before!
But I do want to go home so I can see my room. I guess a whole slew of people (men and woman and children and dogs and birds?) have been helping to strip the wall paper in my room and redecorate and paint in there. I just can't wait to see it! And to see my puppy Simba! I've missed him! And of course my family. How about I come back, check out my room, love my dog and then fly back? I'm just worried about jumping into the fast pace of my life again and trying to keep on these new routines. It's challenging with just Paris and I here. I can't imagine how I'm going to do it with a houseful of family and obligations etc. Gotta figure it out.
Paris and I walked along the river again this morning. The sun has been out and it's warmed up a lot and you can even see the snow has melted off of the moutains that feel like you can reach out and touch them.
What a wonderful experience overall here in Reno. And positive results so far. Not happy about my port at all, but I guess those things happen. They just never happen to me usually. I'm feeling good and have hope and peace again. I'm going to pack it in my luggage and bring it home with me. Literally!
Thursday, February 7, 2008
This is my new wig. I'm going to have my hairdresser at home fix the bangs.
I like it better with a hat. Here's one of my favorite hats. I got this hat at Burlington Coat Factory when Shanna was here...
Here's a photo of Paris wearing my wig!
Wednesday, February 6, 2008
Paris and I worked out and headed into the clinic early for my exit appointment with Dr. Forsythe. My German tests aren't back yet so he's going to need to call me with those. My stool samples were back and they were negative. They thought I might have a parasite or something that could have compromisesd my immune system to begin with. He found no lumps or bumps anywhere, but no one ever has since my surgery. My lungs are clear. Vitals are great. But they always are. He said that had I walked in as a new patient and he didn't know my history, he'd never ever guess I had stage IV cancer. But no one ever does. He's very optimistic though. His best guess for my diagnosis is a rare ovarian cancer rather than a possible GI/colon cancer. They drew my blood today to check my CA125, the only cancer marker that seems to give us any indication of anything at all. It was 96 at my 1 year mark, which prompted my oncologist to start a second battery of chemo with the carbotaxol. After my first round of carbo taxol, it went down to 74. I did a second round of carbo taxol and then came to Reno on the day I was supposed to do my 3rd round. So I missed my last CA125 test (I went awol!). I'm interested in seeing the results. He seemed to think it might be down far enough so I won't have to do chemo when I get home. Normal CA125 is 30 or below. Mine was 22 after my surgery and slowly creeping up over the last year. He wants me to continue my supplements, plus the polyMVA and oral salicinium after I leave. Both are very expensive. He also said I have a lot of mercury in my mouth (old fillings that could be toxic). It would be good to get those replaced. Not sure Kaiser would do it. If we could prove they are poisoning me, they might. He said he wants to see me back in 6 months.
They are going to copy my files so I can take them back to my oncologist at home (who is retiring in March! eeeeek). He said he'd be happy to talk with him anytime. Maybe between the two of them we can come up with a plan that will be kinder to me than that nasty carbotaxol. Hate that crap. With a passion.
I can't believe we're going home Saturday. I'm not ready to go! I've enjoyed my refuge from my crazy cancer filled life of late. Even though I go to the clinic every day to infuse, the cancer isn't consuming my every thought. I'm just a woman in Reno on vacation. I feel normal. At peace. Happy and at ease. Relaxed. I've got a new routine going, focused on only me and I'm digging that. No distractions. No stress. It's been so good for me. I'm going to be sad to see it end.
Tuesday, February 5, 2008
My friend Paris arrived in Reno today around 1245pm! We went to Wild Oats and got lunch and took it over to the clinic and ate while I infused for 2 hours. We stopped again on our way home and got stuff for dinner and breakfast. We came back to the hotel and took a walk along the river. Today was the most beautiful day. Sunshine, blue skies and snow covered mountains. We took a few photos and even figured out a way to hold the camera and get us both in the photo! We found a Tea House and stopped in and got some organic iced tea. It's right down the street from our hotel. I wish I had found it when I first got here! Shanna would have loved it! I would have stopped every day for tea, hot or cold! We plan on stopping in tomorrow for tea to go before going to my exit doctor appt./infusion appt. at 11:30am. Since we're getting done so early
we hope to go for a long walk and then maybe see a movie. We're looking at Juno, 27 Dresses and/or The Bucket List.
Monday, February 4, 2008
Friday, February 1, 2008
I can cross getting my wedding vows renewed off of my bucket list! Dave and I were remarried in front of our two children and our friend Shanna today! February 1st, 2008 is now our official 2nd wedding anniversary. We got married at Chapel of the Bells, just down the street from our hotel, by a female reverand who also happened to be a 4 year breast cancer survivor. Spencer and Shanna from California were our two witnesses. I didn't have my wedding ring to exchange rings again, but not to worry! They had some we could buy! Along with a fake bouquet. We chose a sterling silver ring with purple stones, as purple is the color of hope. Chose purple flowers too. You can see that everyone got dressed up (NOT). Shanna was our official photographer and she gave us a video of the wedding as our official wedding gift! Spencer and Kaelin giggled uncontrollably through the whole thing and I cried like a baby. I threw the bouquet when we dropped Shanna off at the airport and Kaelin caught it. She tried her hardest and fought for it and then she found out what it means and said "I don't want it" and threw it back in my face! LOL