Hawaii - The Postcards

Hey everyone! What's better than a vacation in Blue Hawaii? Wait, wait, I'm thinking. NOTHING!! There is nothing better!! Ivan (Gene) and I had such a great time. We did a lot, saw a lot, learned a lot, relaxed a lot, and laughed a LOT. The weather was incredible and just got better every day. The people were warm, friendly and funny. The sights were gorgeous and memorable. We even discovered some new favorite foods.

We were on the island of Hawaii for five days and on Oahu for three days. For both we rented a car to venture out from the resort where we stayed. Each night we'd sketch out our plans for the following day. Sometimes we stuck with the plan, sometimes we didn't, but we thoroughly enjoyed each day. Honolulu is a great city for walking and exploring, with many choices of things to do. Oahu is quieter with amazing natural beauty.

I have to say I'd love a trip anywhere with Ivan. Well, anywhere except Atlantic City. But this was the best trip we've ever had. I think it was better than a honeymoon because we've been together more than thirty years and love and appreciate each other that much more than newlyweds. He got completely away from work and I got completely away from being a patient. Actually he got (almost) completely away from work and I got (almost) completely away from being a patient, because we had several important discussions about the company and I had bone pain in my feet sometimes. But we both felt totally removed from our usual routine, free from responsibilities and free to have fun.

I'll let the postcards tell Installment One of our report to the Sassterhood. Stay tuned for the next post, Hawaii - the Slide Show!



ALOHA!

Love,
Jan and Gene

Shave to Save

One of Mr. Sasster's coworkers, Vanessa Vaughn-West, is participating in this year's Shave to Save event. Shave to Save is an event where men and women volunteer to shave their heads in honor or memory of someone that has been touched by cancer. Established in 2001, Shave to Save has raised over $750,000 for American Cancer Society’s Hope Lodge of Kansas City. Hope Lodge understands that undergoing treatment for cancer can be both financially and emotionally overwhelming. In an effort to ease the burden of cancer, the American Cancer Society provides free housing to cancer patients traveling to Kansas City for treatment.

Vanessa's fundraising page says, "I'm excited and hopeful. I'm nervous. I'm scared. But, isn't that mix of emotions what cancer patients deal with all the time?"
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It takes a lot of courage to do what Vanessa's doing. We're really amazed by her commitment and downright SASS for this cause, and we hope you will be too. If you're interested in helping her reach her goal, you may visit her page to make a donation. She's almost halfway to her goal of raising $2,500 and we're confident she'll make it.
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In solidarity (counting on you!),
Center & Super Sasster

Woo Hoo! Good News!

Today was Treatment Day again (weren't we just here two days ago?). Thank you, Kylia and Ivan, for keeping me inside my skin from 10:30 to 1:30, waiting for the test results from Tuesday. The results are in and they are GOOD! The CT scan, bone scan and liver function tests show one tumor got the tiniest increment bigger and the others stayed the same or got smaller, so we can continue the present treatment! Whew! None of that pesky chemotherapy cancelling our trip to Hawaii this month. Get to keep my hair at least 9 more weeks! I take back all my whining over Treatment Day if the results continue like this for a long time.

Ask Jan

Q: My first CT scan with oral contrast is coming up soon and my friends offer conflicting advice on which prep beverage I should choose. do you recommend the Creamy Vanilla Smoothie or the Koolaid Gone Wild Party Punch? Rookie Patient

A: You may more fully appreciate the charming nomenclature of prep beverage choices, R.P., when you scan the following resume highlights of the marketing whiz who named both of these pharmaceutical marvels. Perhaps his best known achievement was during his stint in suburban real estate development when he crafted the new identity, "Feather Flower Estates" to replace the more technically accurate, "Toxic Nuclear Waste Dump." His foray into the country music industry created numerous linguistic dazzlers; most notably, "I'm Red, White and Blue, But I'll Never Be Over You," recently adopted by the Republican party in tribute to Rush Limbaugh. The popular accomplishments of this versatile genius are all the more impressive considering the entirety of his career has been conducted from a locked psychiatric ward, with no exposure whatever to reality of any kind.

I have tried both of the imaginatively named beverages you mention and an alternative CT cocktail at the Mayo Clinic. Since my Mother always said, "If you can't say anything nice, don't say anything at all," thank you for your question and good luck to you! Center Sasster

On not 'beating' cancer

Every now and then, we read something that connects with a thought or feeling we've once had and perhaps haven't articulated. I know my Mom and I have discussed the idea of "beating" or "succumbing" to cancer, and how unfair that dichotomy is - the idea of winning or losing. I think, especially for people with metastatic cancer, Brian Doyle's sense of "enduring" is much more appropriate. It also enables us all to have conversations about life, death, and the experience of disease that include more of the inbetweens, the unknowns, and the real stuff of life. So, please read what he has to say. I hope it provokes some ideas of your own, and I hope it brings us all to the conclusion that our true power now is in Doyle's idea of wielding - oceans of humor and patience and creativity, against cancer.

On not 'beating' cancer
by Brian Doyle, Guest opinion

Martial words reflect illusory mind-set against illness


Finally, this morning, enough -- I read one too many journalistic references to someone's "beating" cancer, as if cancer was an opponent to be defeated, an enemy to be conquered, a battle in which courage often wins the day.


It is a lie. Cancer is to be endured, that's all. The best you can hope for is to fend it off, like a savage dog, but cancer isn't defeated, it only retreats, is held at bay, retires, bides its time, changes form, regroups. It may well be that the boy who survives an early cancer lives a long and lovely life, without ever enduring that species of illness again, but the snarl of it never leaves his heart, and you'll never hear that boy say he defeated the dark force in his bones.


Use real words. Real words matter. False words are lies. Lies sooner or later are crimes against the body or the soul. I know men, women and children who have cancer, had cancer, died from cancer, lived after their cancer retreated, and not one of them ever used military or sporting metaphors that I remember.


All of them spoke of endurance, survival, the mad insistence of hope, the irrepressibility of grace, the love and affection and laughter and holy hands of their families and friends and churches and clans and tribes. All of them were utterly lacking in any sort of cockiness or arrogance; all of them developed a worn, ashen look born of pain and patience; and all of them spoke not of winning but of waiting.


A great and awful lesson is contained there, it seems to me, something that speaks powerfully of human character and possibility. For all that we speak, as a culture and a people, of victory and defeat, of good and evil, of hero and coward, none of it is quite true. The truth is that the greatest victory is to endure with grace and humor, to stay in the game, to achieve humility.


I know a young man with brain cancer. He's 16 years old. He isn't battling his cancer. He is enduring it with the most energy and creativity and patience he can muster. He says the first year he had cancer was awful because of the fear and vomiting and surgery and radiation and chemotherapy and utter exhaustion. But he says that first year was also wonderful because he learned to savor every moment of his days. He met amazing people he would never have met, and his family and friends rallied behind him with ferocious, relentless humor. He learned he was a deeper and stronger and more inventive and more patient soul than he had ever imagined.


He also learned about fear, he says, because he was terrified, and remains so, but he learned that he can sometimes channel his fear and turn it into the energy he needs to raise money for cancer research. Since being diagnosed with cancer, he has helped raise nearly $100,000, which is remarkable.


I met a tiny, frail nun once, in Australia, while walking along a harbor, and we got to talking. She said no one defeats cancer; cancer is a dance partner you don't want and don't like, but you have to dance, and either you die or the cancer fades back into the darkness at the other end of the ballroom. I never forgot what she said, and think she is right, and the words we use about cancers and wars matter more than we know.


Maybe if we celebrate grace under duress rather than the illusion of total victory we will be less surprised and more prepared when illness and evil lurch into our lives, as they always will; and maybe we will be a braver and better people if we know we cannot obliterate such things, but only wield oceans of humor and patience and creativity against them.


We have an untold supply of those extraordinary weapons, don't you think?

Spotlight on Sketching Sasster!

Cecilia, Sketching Sasster, finalized the highly anticipated hand-lettered Sassterhood design shown here. Amazing, right?! Her intent was to emphasize the SASS of our group, while also giving each letter individual character like all the unique people that are a part of the Sassterhood. She's brilliant, and we love the design!

Thanks, Cecilia!

Treatment Day

9:30 a.m. to 3:30 p.m., February 18 (for all our fellow fans of 24)

Have you ever felt before a dental appointment that you should go but you really don't want to? For example, you need cavities filled on both sides of your mouth, top and bottom. Imagine instead of that appointment taking an hour and a half, it takes six hours. And instead of once in several years you have to repeat the appointment seventeen times a year, as long as the treatment is working. That's partly what my cancer treatment is like.

My last treatment was a series of small indignities and extended, unexplained delays similar to a really long, terrible day of air travel. So last night I worried from 12:30 a.m. to 3:30 a.m. about my appointment today. I worried about cancer. I worried about what treatment will be like when this treatment ends. I worried about the headache I had from worrying. I worried about things I don't even remember. When Ivan got up in the middle of the session I asked him to bring my headache pills. He did and then rubbed my shoulders. That feels so good in the middle of the night! He went back to sleep and I eventually did. I knew I had to go today and I am grateful for this treatment but I didn't look forward to it.

When I got up this morning I saw the mail delivered in Kansas City before our arrival from Spirit Lake last night. The first thing I opened was from my friend Liz. It was a card that was so understanding and encouraging I cried. It was exactly what I needed to hear. Then I opened my e-mail. Kylia forwarded the designs Cecilia created for the Sassterhood and they were AMAZING! With the clarity of daytime thought I remembered that with Ivan, Liz, Cecilia, Kylia and all of you behind me the appointments would be OK.

Ivan and I confidently set forth at 9:30. At 9:45 we checked into the waiting room on time for my lab appointment. I noted this because I intended to cheerfully murder anyone who put us through the waiting we endured last time. Trust me, a jury of cancer patient peers would acquit. I was the youngest person in the room, again. One talked on her cellphone. People, don't do that. I'm just saying. There was a water cooler in the waiting room. Nice touch! There was a disorganized stack of newspapers, but no magazines. Not so nice. These things add up over six hours, seventeen times a year.

Hooray! Five to ten minutes into the New Yorker magazine I brought, Shari called my name. She verified my name and birthdate, which I appreciate. Another Janet Brown is on the same appointment schedule and this would be a bad place for mistaken identity! Shari put a glamorous hospital ID bracelet on me so I think we're going steady now. That's OK because I like her. She's really nice, answers questions well, has a good sense of humor and is very good at her job. She unwrapped a bazillion sterile packages of gear to use in the blood draws from my port.

The port is implanted in the subclavian artery to my heart, so Shari also wore a face mask for prevention of infection. The needle stick into the skin covering my port was fine. There was a problem at first with it not drawing blood. She fixed it right away with one of her tricks, explained what happened and reassured me in case it happens in the future. During a series of injections and draws from my port I thought, as always, "This is SO much more comfortable than using that tiny, overworked, hard-to-find vein in my right elbow."

Five tubes of blood and ten minutes later an IV line from my port dangled from my neckline and we said goodbye to Shari. We proceeded to check-in at the next appointment, 52 minutes early. The receptionist there greeted me with a health insurance problem, but she accepted my assurance that it would be resolved. I asked if Ivan and I could leave the building! (gasp) and she encouraged us to go. We walked across the street to Rainy Day Books and found several great little presents for Baby Garver. It was a fun break in the Real World!

We got back in time for a snack at the cafe. Props to the medical center for the healthful food choices and fresh flowers on the tables! Again, nice touches for Frequent Flyer patients spending the day there.

After a restroom break we headed for the 11:00 exam with Dr. Khan, my oncologist. We were early, which was good because the lab called and needed to do some additional things. Shari thoughtfully came to me, drew two more tubes of blood and presented me with one of those cute little cups to fill. Hmm. I tried; but it wasn't going to happen immediately after the aforementioned rest stop. I really wasn't bothered by the communication mix-up in the lab but Shari was so apologetic and took responsibility for the mistake several times, even though it wasn't really her fault. Note to staff, that is really important to patients. Thank you, Shari!

Dr. Khan's waiting room has nineteen comfy upholstered chairs, fresh flowers and one magazine. We advanced at 11:00 to an 'intermediate' waiting room. My blood pressure and weight were recorded. This time my weight wasn't announced to everyone within a quarter mile radius and Theresa, the nurse, gently scolded Ivan for peeking at the scale. "We girls have to stick together!" she said. I confirmed a list of my medications and filled out a fascinating little chart of My Distress Level. This is a really good tool and I appreciate that it's part of the treatment routine. A very kind social worker follows up with counseling and support for distressed patients. I felt like I aced a test when I had no symptoms or distress to report.

At 11:20 we moved to the exam room. I was issued an elegant pink cotton number to wear which snaps in back. Theresa brought the greatest advancement in medical care this century, in my opinion, a warmed blanket. I decided to go steady with Theresa too, if she asks. This room has two straight chairs, an exam table with a pillow, one work of art on the wall and magazines on the back of the door. Can you determine the trifecta absent last time? The room is smaller than an office cubicle, which explains the lack of a privacy curtain or a place to put the underwear I just removed. It compares favorably to the room Kylia and I shared three weeks ago, though, which held an Entertainment Potential scientifically measured at -39. She will confirm that was a generous score. We have developed Plans in case we get that room again. I can't reveal much, but they include the flashlight instrument installed on the wall to look in patients' ears, the paper 'sheet' pulled across the exam table, matches and the wastebasket. Stay tuned for updates.

Rebecca Clark-Snow, the RN, BSN, OCN research nurse manager for clinical trials arrived. We asked our current questions and she quizzed me about symptoms and side effects. Rebecca complimented me on having "nice, bony ankles," meaning they aren't swollen. Dr. Khan joined us and we repeated some of the discussion in more detail, including whether to increase my high blood pressure medication. Having high blood pressure for the first time ever indicates fairly certainly that I am receiving Avastin, the study drug, instead of the placebo in the clinical trial. So having high blood pressure is a good problem to have! Rebecca reluctantly agreed to be photographed when Dr. Khan said they were the Study Team. Our family has a lot of confidence in Rebecca, Dr. Khan, Jennifer and Stephanie, the nurses who work with them, and all the staff at the medical center. We agree, team spirit is key, Dr. Khan!

At 11:47 we saw Susan to schedule the bone and CT scans on March 10 (that will be a more difficult day) and treatment appointments for March 12, then headed upstairs to the treatment waiting room. At 12:15 we entered one of the 39 private rooms there, each similar to part of a hotel room. There's a TV, DVD player, sink, recliner, straight chair, lamp and IV pump on a rolling stand. This one had a window view to the outdoors. I was presented with that plastic specimen cup again! and then another warm blanket. It felt even better than the one in the morning. Ivan went to the cafe to get our lunches. At 1:05 the treatment nurse gave us a copy of 36 lab test results from the morning. The pharmacy only mixes the treatment meds after those results come back in acceptable ranges. My first treatment began at 1:15. When the IV bag is nearly empty the pump beeps until a nurse comes to turn it off. I noticed another pump across the room beeping a few beats after mine, an electronic call and response hymn from the cancer choir.

Four and a half hours after we left home the second IV began. By this time I finished reading research articles about tinnitus, African merchants in Guangzhou, the fact checking process for the New Yorker, the real estate market in Florida and three tributes to John Updike. I was tired of reading; tired in general, really.

We were happy to see the woman who brings the beverage and snack cart. Ivan and Kylia compete to see which of them can score one of her sack lunches. So far it's Kylia 2, Ivan 0. I've heard this volunteer decline to provide a double martini to another patient, but we all appreciate the drinks and her friendliness. At 3:00 the IV was over, my port was flushed with Heparin and we were turned loose. At 3:30, Ivan and I both grateful to be home, I took Advil for my port site that had been aching since the morning lab tests and took an hour nap.

I apologize for the exhaustive description, but it still took less time for you to read it once than it takes for us to experience it. I hope it's clear that so far none of it is that bad on its own. It's just that the cumulative effects are wearing. Maybe this will help someone understand why we sometimes complain and sometimes celebrate, and why your ongoing support means so much.

The nicest thing about Treatment Day is when it's over we have the longest possible interval of Real Life again until the next Treatment Day. Nicolai arrived from Ames to spend a couple days with us. Kylia made us dinner and Matt brought me flowers from Baby Garver. We had a great family night together. Thank you! I love you, I love you, I love you.

--Center Sasster

Sasster Spotlight

First, we'd like to introduce you to two of our most recent Sassters, Kim and Grant Hinkle. Kim is our Sasster of Style. A fashion designer and entrepreneur, Kim Hinkle brings a sense of panache to our Center Sasster. Her husband, Grant, is known as Grant Master Sasster. A professional poker player, Grant is always ready to give Janet tips on Texas Hold 'Em. (he also provides endless entertainment in person, gambling or otherwise).

* * * * *

Periodically, we'll also highlight the accomplishments and contributions of our talented crew. This week's Sasster Spotlight is dedicated to Henry Lindgren, our youngest member. Henry, officially regarded as Mr. Chubby Cheek Cuteness, always makes Janet laugh. In fact, she likes him so much she's often referred to him as "her boyfriend." Henry's main skills are drooling, smiling, and being incredibly cute. He's a good baby and we admire that he cares about others at such a young age.

Happy News!

We are so excited to announce that Kylia and Matt are expecting a baby in August! We think we see a little baby bump starting to show, so it's time to get ready!

I've been authorized at last to Start Shopping, so Kylia and I chose some gender neutral newborn clothes. (They won't know for 6 more weeks if it's a boy or girl- or might wait to be surprised.) This morning I researched modern names for Grandma, safety tips for choosing a crib, and quickly scanned high chair options.

For now we think our grandparent names will be Papa Gene (Ivan's middle name is Eugene) and Gigi Jan. Baby Garver may have an adaptation or two to our plans, though.

It has really been fun anticipating a new baby in the family and we're enjoying sharing the news!

Now all you Sassters shy about learning how to post your comments, gather up your courage to send your questions and comments about the pregnancy and join the conversation!

It took me 3 tries to make it work my first time, but you'll probably get it right away. Just click COMMENTS at the bottom of this post, type your thoughts in the white box on the left, copy the funny looking characters you see on the right in the box right under them, and enter your name at the bottom. Call Kylia for help (816 550-8731), that's why we're paying her the big bucks to run the blog, right? What else is she doing in her free time, eating bon bons and reading What to Expect When You're Expecting? I promise the second time, it'll be a breeze. I love you all and can't wait for you to get acquainted with one another!

--Center Sasster

Who's Who

Welcome to the Sassterhood experience! We hope you find the introductions below helpful as you get to know everyone.

Center Sasster - the amazing Janet Greene Brown.

Solid Sasster - Ivan (Gene) Brown (Janet's husband) is our Center Sasster's rock. He brings strength and courage.

Super Sasster and Mister Sasster - Kylia and Matt Garver (Janet's daughter and son in law)- bring everyone together to help support and celebrate our Center Sasster.

Superfood Sasster Nicolai Brown - (Janet's son) knows what's good for ya. You better be drinking your green tea and spicing things up with turmeric when this guy comes around - he adds nutritional insight.

Swearing Sasster - J.C. Brown (Janet's brother in law) is a master of profanity. Before you get offended, please know that cancer treatment is no walk in the park, and some f bombs are helpful along the way. This guy knows it and helps articulate those frustrating moments.

Plaster Sasster - Jack Greene (Janet's Dad) fixes houses, boats, cars, and can do all things handy. This Sasster's skills have been appreciated by the whole family.

Seester Sasster - Connie Wilson is indeed Janet's sister, and they've shared this nickname for years. Connie likes to brag that she's know Janet for 53 years. Plaster Sasster's got her beat at 55 years, though...sorry to burst your bubble Seester. ;)

Siren Sasster - Curtis Wilson (Janet's brother in law) is a reluctant hero (he didn't want to brag about his first power). A fire chief, he's an expert in putting out flames. He's ready to stifle any cancer-related fires that occur. Hopefully Janet doesn't get the idea that arson is permissible during rough times in treatment... Curtis also brings comedic relief to the group.

Story Sasster - Taryn Wilson (Janet's niece) is always reading, and provides recommendations for a healthy escape into literature.

Memory Making Sasster - Mary Anne Denning (Matt's Mom) makes everyday moments worth remembering. Whether it's just recounting an experience or doing an activity together, this Sasster makes time count.

Grand Vizier of the Order of Good Listeners - Bonnie Albertson (Janet's friend) is the official, designated, incorporated, and honored person entrusted with discussing big questions and listening to the answers, even hard ones.

Smiling Sasster - Suzy Synhorst's (Janet's friend) main goal in life is to make people smile and show them how much LOVE she has for them. She can be funny (questionable by her husband); but mostly caring and loving. Suzy is also a retired dentist, which brings additional meaning to her name.

Serenity Sasster - Brenda Lopez (Janet's longtime friend and former neighbor) has faced a lot of challenges in her life, and through them she's learned to roll with the punches. In doing so, she's been able to look adversity in the face, stand firm, and keep moving forward.

Sure thing Sasster - Brenda Nielsen's (Janet's friend) response in accepting the invitation for membership was "I'm in it 175%!"). She's gung-ho, a solid member of our Superteam.

Sasster Snaps - Dave Kaup (family friend) captures people and places through his keen sense of photography. A professional and personal pursuit, Sasster Snaps enjoys this artistic outlet.

Sewing Sasster - Charlene Kaup (family friend) knows a thing or two about mending seams and pulling together the various fabrics in our lives.

Spirituality Sasster - Grace Rowlson and Richard Potter (family friends) bring a powerful sense of peace and understanding to the group.

Sarsaparilla Sasster, Cookie-Maker Extraordinaire - Ashley (Shlee) Woodroof (a friend of the family) digs sarsaparilla and cookies, and is glad to bring both to Janet's treatment experience.

Supportive Sasster - Stephen Litts (a family friend) provides a special ear to Ivan.

Stable Sasster - Bill Schmidt (friend of the family) is warm and dependable. We count on him to even the keel if J.C.'s swearing gets out of hand.

Scholarly Sasster - Cynthia Schmidt (friend of the family) is insightful, and brings an intelligent sensibility to the group.

Shining Sasster - Jen Lindgren (a friend of the family) brings firepower. She makes beautiful scented candles, and shares them with Janet. (Shhhhh, don't tell Curtis!)

Smallest Sasster - Henry Lindgren (a friend of the family) brings chubby cheek cuteness to the group. Our youngest member, Henry's responsibilities are centered around being the ladies' man he is and spreading smiles.

Sketching Sasster- Cecilia Gilman (family friend) brings creative direction to the group. She's currently designing a trademark for the Sassterhood that will surely be impressive.

Cindy Sasster the Entertainer - Cindy Womack (family friend) loves to entertain. Forget cheeseballs, Cindy knows how to bake a ham and slice it. Actually, I'm making that up, but if anyone does know, it's Cindy. She's social and likes putting on the ritz.

As you can see, the Sassterhood is a collective of highly supportive, diverse people in Janet's life. We're very glad you joined us! Thank you for being here and for being the wonderful friends and family you are.