And We Go Forward

I’ve spent a lifetime figuring where human beings fit, what our mission is—especially mine—and I think we all do some of the from time to time. I am eternally grateful for the early indoctrination of the Methodist Church, but also for the spiritual guidance I have received from many other sources. I am In a much broader place now and my spiritual journey slips into iplace right where it began: my family, my tribe, my ancestry.

Ancestors who lived 2000 years ago and through ancestors known to us, and we octo- and septuagenarian leaders of the pack today. The rest is future and how exciting it is as we have watched our next  two+ generation make their way in the world.

This seeking always brings me full circle back to some segment of our family circle and I realize that I learned everything I needed in Sunday School. . . “Jesus Loves Me,” “Let your Little Light Shine,” and “A new commandment I give unto you, That ye love one another; as I have loved you, that ye also love one another. “

The lucky baby born, eyes not yet open, and still a little blue around the gills instinctively raises its arms in an open, waving motion seeking food and contact. How lucky the ones born that find loving hands eager to fill those needs, the parents’ hands representing a long line of family, tradition, and shared affection. The instinctive reaction of placing one’s cheek against the soft, downy little face “marking” that he/she belongs with us—forever; A child’s first anchor. The arc of my individual growth inevitably twists and winds through the hands that touched me as a baby and the soft cheek kiss of a parent that says “you belong here” and continues down through the 24 people in my list of descendants who, someday, will kiss the cheek of a newborn and some wisp of my influence goes with that gentle kiss.

When it is our turn in the vast order of things to take responsibility for not only ourselves but our sons and daughters, we live those years, using as many resources as we have, creating new tools where they are lacking and, by example, admonition, guidance, sweet love, and/or tough love, we give our children that second pat on the butt (now standing upright, maybe taller than you, with ideas of their own we may not like) to build on what we have provided for them. Once our children are launched, our relationship changes, but never ends.  The responsibility for their children pass to them; the intensity of that first kiss given to each child born to us-now called “grandparents-” continues through the first gentle kiss placed on the baby’s face by his/her parents, but the responsibility into  is no longer ours to bear. Perhaps that is why we call grand- and great grands the dessert of life—the spark of love and caring remain strong in us free to share all that at a totally different level, responsibility is no longer our main function.

This year, perhaps due to facing the end of my life, but very much, I think, because I’ve been fascinated by our family history and had to get that sorted out as to what really was going on for us (I forget, occasionally that there are and have been a ga-jillion million families that have walked this road) before I could take pride and joy for what I have done since I became a “responsible party.” And celebrating that which will continue as long as there is life on this planet.

When you get to “The very best we could at one given time” as your answer, that’s it.

These last two years have also been times when I wonder if I have fulfilled my extended family responsibilities as I have begun to have a different understanding of the relationship between my male-oriented family, a mother who never seemed to be on my side, and me. My answer is a resounding “To the best of my ability at any given time.”

With great plans, ideas, and hopes for our children, we all helped create and pass on the love that will be passed on to each child in our tribe—a “wisp” of the touch that we helped nurture in our day and to our tribe, perhaps, a closer role with John’s descendants, but every family reunion reminds me that, distant or close . . . WE ARE FAMILY!!

My brother, Jim’s observations, I’m sure, is true—that our generation is important to the two generations that precede us and two that follow. Not remembered two generations hence? OK. We held the banners high while we were here.

GLORY HALLELUJAH FOR OUR GENERATION VANVORSTS, GIFTED WITH THE SPOUSES WITH WHOM WE HAVE BUILT THIS FAMILY.

Another Christmas . . . Another Birthday . . .

Thank you so much for your continued thoughtfulness of me. You are an inspiration to me and I love you the best I can, and that's a lot. From time to time, if I think of something that might be helpful or a good way to describe what is happening to me, I run it into this blog.

Neighbors, healthcare providers, my family, and so many other people have, unbeknownst to them, helped push me through a bad day with a smile, a joke, or a hug. And shared the joy and laughter (and singing off-key) of a good day! It’s still a big, wide, wonderful world out there.

Cancer has treated me gently and still is handleable, thanks to hospice pain and situation management. With the good grace of Ralph, assist of hospice, my body is still treating me gently as it softly steers me away from its lifelong task of living, caring, and assigning that energy from my legs, arms, lungs and using it to keep my eyes reading, my heart still able to take a leap at the sight of a loved one, and my head still working--mostly. I'm so grateful for that, believe me. Each day brings a new surprise—wanted or unwanted . . . you just never know which!

I continue to perfect the John Cleese “Silly Walk,” and found a few twist and tiggley-toe shots he hasn’t even dreamed up yet.

You are in my heart and may I continue in yours.

Beth

P.S. Grace and Frankie are back on Netflix. This is a most extraordinary show . . . but how could it not be with Jane Fonda and Lily Tomlin--already legends in their own rights . . not to mention Sam Waterston and Sheen. 

Getting by with a little help from my friends

Wow. Where to begin.

I am enrolled in Hospice and that often is a foreboding word, so I thought I would explain a little bit about the services provided, which are so much more than I expected. As I anticipated, they will deliver services to me here at home as long as I am able to live here. Fortunately, if the need arises, I can transfer to assisted living, which is just down the hall from our apartment, and Hospice will supplement any needs over and above those provided by Bell Trace.  I get a weekly massage—my first being today—and, though I knew my shoulders were tense, I didn’t realize how tense until the massage. I fell asleep before she left!! I have a traveling wheelchair courtesy Hospice, and I am probably safer in a chair than on the rollator now. Ralph and I meet with a social worker tomorrow and I will be visited weekly by an RN.

Well. First of all, I am comfortable with no need for pain easement. I am seven weeks after my last infusion and there are a few intimations of my mortality. Small changes in the “gyring” of my inner gyroscope, shortness of breath, headaches and, of course, the blasted fatigue—there are so many things I still want to do!!! I had hives for a few days after Dr. Dayton broke the news, and still find many spots that need scratching from time to time. Occurrences of burning mouth more frequent, weight dropping rather dramatically, and some chest pains—none lasting very long. Just letting me know my body is preparing me for the inevitable. Food mainly tastes like sawdust, and my appetite is waning. I even passed by liver and onions the other night. Not funny, but I had to laugh when the hospice RN said, diplomatically, “Beth, it will be OK to use Aleve now before getting into the opioids. It’s only interaction with deflenac is ulcers.” And so it goes.

I’m keeping busy and Ralph is a terrific helper—I’m still in an “I’d rather do it myself” mode, and he humors me as he is pampering me. And I am learning to accept help and say “thank you.” B

Love,  Beth

Bad Road Ahead

I have been dreading this day, but I must tell you that I am no longer taking keytruda infusions because the cancer, particularly in my left lung, has grown considerably between the last two MRIs. There were other options--but none that gave me more than 5% chance of remission and most of which are very hard regimens for the body and then going through the rites of passage of dying on top of that. There are, as I read my medical record, at least 11 places in my body to which the cancer has metastasized and it would be foolhardy to think they will not show their ugly faces, so I chose not to pursue treatment. Ralph is in reluctant agreement that this is the best course of action for me right now. 

 My last infusion was mid-June, and I've known this for a week or so now. It was my intent not to burden you with the information until there were more specific infirmities that made it seem imminent, but that has kept me from emailing you above a facebook posting or two, and it is more important to me that we communicate than to keep this a secret.

 I think I was not as surprised as I thought I would be. A few months ago, I went through a strenuous time and I think that might have been a foreshadowing of knowledge that my body wasn't working well. Though I've kept a positive attitude about it, I've felt a diminishing of energy, balance, and lung ability. I'm having a few bad days here and there--mostly related to high blood pressure which I'm sure is a result of the stress I'm feeling. But it drains just a little more strength from my body that it needs to fight whatever is coming. 

 To most intents and purposes, I am the same old, same old; I treasure each day and keep myself busy writing and painting. I expect to keep that up as long as possible. There's no timeline here and I expect to keep chugging along as best my body will let me. I just need for you all to let me be me throughout this stage of my life. Again, I am so thankful for the past two years.

 Again, take what you will from these postings. I will not be posting frequently and do not intend to add a great deal of day-to-day detail, but probably will add some of my recent thoughts on the subject, for what they might be worth to you.

With a heart bursting with love,  Beth

Clear road ahead - no known construction or detours!

I'm not saying that I'm cured of cancer--that probably will never happen--but Keytruda and my immune system seem to be controlling its growth well. 

The metastasized spots in the liver and bones are no longer visible; there are still spots in my lungs that have not grown since the last CAT or whatever they do, and it is unknown, since this particular test does not differentiate live cancer cells from dead ones that have not yet been absorbed by my system. I am continuing treatments and hope for a "medication vacation" in the near future.

Therefore, I will not be blogging frequently.

I'm living as close to a normal life as one can get at age 84. Undoubtedly, the treatments have aggravated some of my existing "owies" and "ouchies", but I'm exercising, keeping moving, and doing my part to keep the joints oiled (Keytruda does list both fatigue and a propensity to attack joints as side effects) and keep everything moving. Which most all folks my age are also doing.

I'm blessed every day the sun comes up and I run through the catalog in my head of those I love and who love me in return. I think daily of a dear friend of mine, Rainie McCormick.

 I've not shared this story before partly because it can be a downer until you see clearly the will and determination to keep on living that Rainie drew on every day for eighteen months in the mid '70s. How she fought for each day and determined to "stay alive." But I want to share it now that I'm seeing daylight. Tomorrow may be a different story, that's the way life goes--but one day at a time works for me, and this is what I'm seeing and feeling today.

Rainie was my mentor in politics and Administrative Secretary to the Ruckelshaus campaign in 1968--my boss. But for her guidance and wisdom, I would not have had the career and experiences I have had in government. After Bill Ruckelshaus was defeated for U.S Senator in a race against Birch Bayh, Rainie continued her work as assistant to the Assistant Director of the State Republican Committee, Betty Rendel. I went on, as most of you know, to establish a career in the Indiana State Senate. Rainie (and Betty as well) was a great tactician, savvy politician, and a dear friend all wrapped into one. 

She was diagnosed with lung cancer and suffered 18 months of treatment.  Chemotherapy wiped her out completely, taking medication that made her sicker than she was, she lost her hair, and survived a couple of hospitalizations, one being the removal of a lung. I'd visit her when she was at home, helped her with her duties at the State Republican headquarters when she was well enough to come to work and sat by her in the hospital when those times arose.

She had worked downtown almost the entire week before staying with me for the weekend and we were jubilant. We talked about old times, war stories, and our kids. We laughed until we cried, helped, I'm sure, with the bottles of wine we killed, and chatted with my kids as they roamed in and out on their weekend wanderings. There was always so much joy in her, bubbling over frequently; she also greeted a political or personal challenge with the same vigor. Would never want to be on the opposite side of her.

She drove herself home to Lebanon and died a few days later.

This was the lung cancer "story" I had in my mind when I started this process. I have had such an easy walk through this, thanks to modern medicine, and occasionally, I cry a bit for what Rainie suffered. I also take courage remembering how she handled her struggles. My challenges have been nothing compared to hers, but I am maintaining.

 The last six months have been a dizzying experience, seeing my ability to do things varying sometimes day by day, my energy drained by small efforts. Intimations of my own mortality has also fostered great personal and spiritual growth, and a time to gather in and celebrate the people in my life. 

One day at a time; assuming there is a future; appreciating each day just in case there isn't.

Road Ahead Not Charted

If you've flown down highway 69 to Evansville and back, I'm sure you have noted that the cursor on your map program is roaming through fields, over hills, and even over rivers where there exists no bridge.The #### thing keeps telling you to "take the next turn" to get you back on a familiar route.Then "recalculating."

Well, I think I'm riding that darn cursor now. However, there isn't anyone who can say, with authority, "take the next turn," so it gets even more frustrating. My doctor is exceptional, but he doesn't pretend to know everything. And I'm dealing with aging (never been 84 before--don't know what's par for that course), the ongoing progress of arthritis in all my joints, cancer (where is it--has it wandered to a new area? Is it gone?) and the complication of the treatment needed, and still the same old Achilles heel(s): my knees. How do you deal with all of the above? How do you identify what's attacking your body?

Fatigue, I've knocked in the head. That is a bona fide side effect of the Keytruda and I sleep a good 12 hours a day--a 4:30 nap when I run out of steam and the rest at night. Although frustrating and difficult to accomplish much, this is actually a blessing. The ability to sleep escapes many cancer patients . . and other 80+ year olds! I do it well. 

I'm no stranger to pain, since I have suffered from knee problems since my late 'teens, and have lived with sciatic nerve pain off and on ever since 1968, but it is disconcerting when pain strikes now. Is it just the same old, same old--just aggravated by the other factors? Or is it the cancer or the cure that is affecting my body? 

I have unpredictable "spells" of discomfort and, lately; lack of balance keeps me using a walker most of the time. I haven't figured out any pattern for these minor setbacks--and maybe don't have to. 

No set answers, no concrete path to follow. So, my "formula" for surviving is the same as it always has been--take one day at a time; plan as if you'll live forever and enjoy every day in case you don't!!

The bottom line is the scans done in January show exceptional progress in shrinking the tumors; I have another infusion on the 23rd of March, another set of scans in early April. Then??? 

I'm recalculating . . .

HIGHWAY IS CLEAR; NO RED LIGHTS ARE NEAR

Ralph, Bro Jim, and I met with Dr. Dayton on Friday. Scans taken last week show marked improvement in shrinking the existing tumors, especially in the sensitive lung area. Some of the metastasized locations are cancer-free and the tumors in the liver have shrunk considerably; only one site visible. 

Every new infusion session leaves me feeling stronger and I am experiencing no side effects other than the fatigue caused by my immune system working overtime! So, I am planning ahead more than a month or two now; starting some projects, and keeping the legislators and congressmen that I vote for on their toes.

The infusions will continue, at three week intervals, for three more injections; then more testing. Since I am, with only an occasional ache or pain, living a regular life, I won't be adding much for a while, hopefully. 

Isn't it interesting that good news is often boring?  I'll take boring, believe me! However, I'll jump in once in a while if there is news.

I will leave you with the report I wrote for Dr. Dayton. He seemed to enjoy it. Hope you do, too. 

TO:      Dr. Dayton

RE:      “Whether” report

DATE:  January 19, 2018

The cough resists,

Though “she persists”.*

It seems deeper

But I’m a good sleeper.*

The feces often tightens

But Colace/Metamucil lightens.*

Walking like a 76-year old;

Twice down the hallway is my goal.*

I get a rash between my eyes;

Use globs of oil to disguise.

Balance is quite awry;

Balance classes I will try.

“Saddle” pain, it does remain;

Taking more Tylenol helps regain.*

Weight is constant there;

T’is a shame, I have lots to share.

Feeling healthy; better than wealthy;

Catch 40 winks, slightly stealthy.*

Don’t know where we go from here,

But thanks, Oncology for the end of last year.

I’M STILL HERE!!!!!  Poet Laureate Infusion Section

Yellow Light: Proceed with Caution

From where I sit, it has been a marvelous Christmas. Over the years, we have shucked some of the trappings of Christmas--my Christmas tree for two years running has been a canvas painted and decorated by Ryan, Betsy and Jeromi's child (child??? now 18 and headed for college next year), and me that hangs on the wall, pointsettias and some favorite Christmas decorations scattered here and there. 

But it has been totally filled with love, joy, and the people that I hold dearest to my heart. Especially since the possibility that I wouldn't see this Christmas loomed before me, I appreciate that I have had God's good grace of reasonably good health through and now beyond the holidays. From Facebook photos and comments, and general conversation, it seems that you have enjoyed the family time that Christmas brings as well. I still have a notion that all of the energy, Greene and Gray, that has flowed through here in the last couple of months, has helped me get back on my feet again.

If any of you have the bad luck of cancer, I pray that you qualify for some of the new treatments based on genetic principles, like Keytruda, which unleashes the power of your own immune system to fight the cancer. With all the turmoil churning in our health system, my heart goes out to folks who are not insured and who do not have the advantages I have had. The bill, so far, has been around $65,000 of which we have paid, so far, $1,800 plus some $200-$300 bills for PET and MRI scans. Waiting to see what happens when the Trump shoe actually drops. 

I am now two weeks out from my last infusion. I do feel fatigued and a bit "whoozy" for a day or two after the treatment, but that diminishes quickly and I am pretty much in my usual routine, albeit a few more hours of sleep and a still-diminished appetite. 

I'm more and more confirmed that the many of my problems in walking (now, especially, since I can walk around 600-800 steps without getting out of breath) are the result of so much time in bed and lack of energy to continue an exercise routine. I've been using a walker lately and have increased the intensity and time of my exercise routine. There is a marked loss of my balancing ability and I start in-house balance exercises this month.

This may be more than you want to know about me and my condition, but there is a lesson here--any time, effort, and sacrifice you might make to improve your health now is like depositing money in the bank to retire on. Especially now, as research is breaking through in many areas to use a person's own immune system to tackle diseases or illnesses that come our way. Thank God for the Van Vorsts, Stetlers, Borgs, and Bastons who all contributed to my gene pool! 

I'll go in for some scans, and on the 18th of January, will have a "certified" opinion as to the effectiveness of the treatment. Will keep you posted.

Just Fueling up!

Nothing big to report, bu I'm doing very well. Amazingly so, so I wanted to share that with you.

The sessions sap my energy and, although I generally am more productive towards the end of the three weeks. I think I was still feeling the effects of pneumonia through the first round of treatment, so it was atypical.  I still manage to spend 12 hours sleeping most days. The pain that I recognize comes, I am sure, from the de-conditioning due to my low rate of activity--knees, lower back (though the lumbar section lit up like a Christmas tree on the PET). I've resumed exercises but, of course, tire quickly. I can manage the wonderful series of stretch exercises taught to me 40 years ago by Ruth Bender, and a few core exercises each day. I can't lose what I've worked so hard to maintain in my ability to walk, which seems to continue to be a major Achilles heel for me, cancer notwithstanding. I recognized early on that my job in this treatment endeavor was to keep my body fed, watered, and as healthy as possible Never realized how hard I would have to work at it. I've lost 20 pounds in all the places I didn't want to lose weight; my appetite has diminished greatly. 

 I am extremely grateful that I qualified for Keytruda and anxiously await the results of testing in January. Since Dr. Dayton wasn't sure I would see Christmas without treatment, I'm feeling healthy, well, and lucid. Something good is surely happening. If all I gain are the past two and a half months able to do what I do, it is a great blessing. The "alert" has opened up communications with Ralph, you and Jim (in the plural--including June and Carolyn), my kids. I think we've gained a different level of understanding about each other and it has been a total revelation to me. All things considered, I'd rather NOT have cancer, but . . . it is what it is, and I'll make the best of it.  

I'm Not Alone in My Fight with Cancer

New Hope for Stage 4 Cancer Patients

from AARP magazine, October/November issue, p. 31

. . . surgery ADRIENNE SKINNER awoke from cancer to stunning news. "I came to, and he told me we couldn't do it," Skinner says of her surgeon, who had planned to remove a

tumor from the end of her bile duct. "He said, 'Cancer has invaded your liver. It's stage 4. It's systemic.'" She was diagnosed with ampullary cancer, a form so rare that no standard treat­ ments existed. Until now.

After some "pretty nasty" chemotherapy, Skinner , 60, of Larchmont, New York, became part of a clinical trial for pembroli­ zumab, marketed by Merck as Keytruda.

The drug helps the body's immune system fight the disease. Skinner started infusion treatments in April 2014. In July her surgeon took another biopsy. "He said, 'If somebody hadn 't told me you had cancer, I never would have known,'" she notes. The tumor was gone.

The Food and Drug Administration (FDA) has since approved further uses of Keytruda, such as for pa­ tients with a genetic mutation called mismatch repair deficiency. The drug continues to be tested for use by patients without the mutation . It is approved for some head and neck, lung, bladder and metastatic melanoma cancers, as well as Hodgkin lymphoma.

Durin g clinical trials , the medication was famously

used to treat former President  Jimmy Carter, who two years ago announced he had cancer in his brain and liver and said his fate was "in the hands of God, whom I wor­ ship." Four  months later, his cancer was gone.

Skinner has seen similar results. She's back at work and makes a point of swimming and playing tennis. "I'm running around like a maniac. I'm out gardening right now," she says. "I know what a gift is, and I know the gift of life." -Mindy Fetterman

No guarantees that I will have similar results, but looking very hopeful . . .