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 . . .

MORE RED AND WHITE CONES: REPAIR WORK!!!

Good News: Treatment begins.

Back to the 26th and my first infusion of Keytruda. Though I was still in a funky fog of recovery from the pneumonia, Dr. Dayton started the process and I met the members of my team-a clinical nurse, Sarah, and a Nurse Practitioner, Mike. The treatment is a 30-minute IV infusion of the medication. I was still in recovery from the pneumonia and, already in some big-time muscle/skeleton pain (not disease-related) after six awful hours Saturday night in ER (*see footnote), so I'll never know which pains or sensations are attributable to the infusion or the other factors. Tooling around in a wheelchair pushed by both Ralph and brother Jim to get to the appointment felt strange, but it was the best I could do. 

My sense of balance worsened, my brain fuzzied up a bit more (no comments, bros!), my slim appetite went away completely, I cried over anything, and I slept 22/7 for a few days and nights.  Ralph weathered these ups and downs and kept me on course with meds, water, and food. Glass half-ful: so far, have dodged the most common nasties: vomiting, diarrhea and constipation.

I gradually began to sleep less and feel better. I relied heavily on oxycontin (perhaps overdoing it a bit) but, by mid-week the second week (early October), Sarah helped me get to an "as needed" basis and, since then, I now use Tylenol to tackle pain before going to the opioid. Have used very little of either type of painkiller since then. I've also discovered, both when using oxy (which scares me) and lesser drugs, I start with a half dose and usually don't have to escalate to the full subscribed amount. Works for me. If I have pain, it generally centers around the middle and lower areas of my back, an area that is no stranger to sciatic nerve and other traditional lower back ouchies, but also the sites of some of the metastasized cancer. Though not painful, I am always aware that my breathing capacity limits severely how active I can be.

As each day goes by, I regain a little strength, walking more, even sensing longer intervals before shortness of breath sets in (although the latter varies from time to time.) The loss of appetite, particularly, is a biggie because my job--my ONLY defense at this time, along with keeping a positive attitude and keeping my body moving--is to keep myself well-nourished and well-watered. I have lost ten pounds over the last six weeks. I also continue a 30+ year practice of doing simple flex exercises most mornings--because it is important to keep your body parts oiled up and ready to use.

Better News: Second infusion

I had my second infusion yesterday--Thursday, November 16, and I've experienced only a slight escalation of the fatigue and shortness of breath so far. The symptoms vary in intensity from day to day, but mostly,I have been up, active, and looking for something to do for the last week or so. Humbly grateful, the "fuzzy fog" seems to have lifted and I have my brain back!! I'm awake six to eight hours a day now.

Best News: Tests show good results

My blood tests, taken on the 16th got rave reviews with only two key factors that were low or high (opposite of where they should be) but not alarmingly so. I have learned to respect my body and its marvelous capabilities--it has supported me through these 83 years and is still working hard for me. My vital signs have remained consistent throughout.

Keytruda

I misspoke in an earlier blog. Keytruda is administered intravenously and is designed to find and destroy a certain protein enzyme--PLR3, I think. The DNA immunotherapy, which I mistakenly identified earlier, targets a certain gene and must be taken by pill. Immuno-therapy is the long-awaited treatment that can target a specific gene or protein enzyme in a cancer cell and deliver the goods directly to the cancer. This is cutting-edge technology, in general use long enough to make the medical community excited about its results. Keytruda attacks and destroys the protein enzyme that coats the cancer cells, thus preventing my own immune system from knowing there is an invader in my body. When uncovered, my own immune system, then, fights the cancer. I am exceedingly grateful that I qualify. Jim and Chuck have been with Ralph and me every step along the way and their medical background has helped us understand the process.They and my three sils (sisters-in-law) have also given us needed moral support.

Next infusion and beyond

The next infusion will be December 7th and a fourth is scheduled for December 28th. An evaluation of my progress will occur around my January birthday and a new or continued game plan will be established.

I still have just one day at a time, like all of us. But the importance of those days has increased tenfold for me, I am so fortunate to have both a Greene family and a Gray family who have pitched in with their presence, offers of help, cards and emails to keep Ralph and my spirits up. And as the importance of my "Todays" increase, so, in turn, does the appreciation of all of my "Yesterdays" and the people who have shared those days with me. Love to all.

* Through a misdirection of the results of blood tests taken the day I left the hospital, and various other Goldberg-type goofups, I spent five hours in the Emergency Room unnecessarily, at the direction of my personal care physician who recognized a rising white corpuscle count as a situation beyond her expertise. Instead of bringing Dr. Dayton into the conversation, I went to the ER at her direction. I spent the time either sitting upright or on a very uncomfortable gurney. Moral of the story: keep track of your own medical history and question, question, question. 

POTHOLE!

Daggonit, a POTHOLE! Or two. Blew the air out of two tires, but the axle remained OK. 
As I was impatiently waiting for my first immuno-therapy, can you imagine my surprise when I was diagnosed with pneumonia! I reported to my doctor on Saturday extreme shortness of breath, and fatigue. Expecting "take an aspirin and . . . " he said, "Call an ambulance and go to the hospital--no husband driving me there. An ambulance." Well, to be sure, I did. 

After  5 days in the hospital, I am again at home, resting much more comfortably. I am rescheduled for my first immunotherapy on the 26th, so I could use a few prayers, a couple of attaboys, and whatever else might help that they can actually start treatment then. My white blood count was still high, "but descending," and it needs to descend quickly.

Hospital stays are nothing to write home about and I really didn't do much but sleep and eat the first few days. The staff, however, were wonderful and made it as comfortable as they could. The highlights, between naps, were the encouraging visits from my family -- I'm for sure not alone in this. And it has been a real treasure for Ralph and I to lean upon Chuck and Jim for their medical interpretations as well as June and Carolyn. 
Even bad food tastes better at home in your own 'jammies than bad food at the hospital in their nightwear designed by Dracula. I'm using a walker as a precaution--I finally got my legs working real well--but my balance has not yet returned!!! Had a warm welcome back to Bell Trace, Ralph and I fell back into our comfortable routine--and Life is Good.

ROADBLOCKS and those darn cones!!

Roadblocks ahead!! Watch out for those tippy orange and white cones laid out in such a manner that it looks like a darn maze. And s l o o w traffic. Of course, roadbocks and cones mean that something is going on, something is being built, and looking down the road a bit, it really wasn't that bad after all! And perhaps the end result was worth all of the "dammits" and slow burns you experienced while the road was being built.Well, we'll see!

Ralph, my brother Jim, and I consulted with Dr. Mark Dayton, Indiana University Health, Bloomington. He is collaborating with Dr. Greg Durm at the Simon Cancer Center in Indy. I will start keytruda, one of the new immuno-therapies, Wednesday. Treatment consists of an infusion once every three weeks and will be done in Bloomington. This is not chemotherapy and tends to be easier for patients to tolerate, but, of course, it does have side effects. It also has proven to have amazing results in many cases. There is another immuno-therapy drug tied to the DNA/gene EGFR that might be a second line of defense. My testing is still out on that one.

Not all of the news was positive, however. The tumors have grown since my first scan and lesions can be found in the liver, left femur and left hip, in the small of the back of the spinal column, and there is a mass in both lungs and the  numerous lymph nodes in my chest. Without therapy, the outlook is grim.

I am not deluding myself that it isn’t going to be a rocky road ahead, but we can work with it.  I needed time last night to let the news sink in and shed a few tears. 

I feel safe and in good hands and I feel the support of each of you—you don’t have to physically stand by my side for me to know that you are sending me prayers and good thoughts. My "stiff upper lip" goes spastic every once in a while, but I take my dammit doll . . .

On my part, I am feeling calm and resolved to seeing this through. It is interesting to realize what kind of thoughts take priority in your mind-stream (and Dr. Dayton has the MRI to prove to Jim that, yes, indeed, I do have a brain) when you are slam-bang up to the wall of your own mortality.

 So far, the inventory review of days past are bringing me pleasure; I'm not skipping the days that I would have gladly traded in for almost anything else, but I finally realize that I can't change even one of them! So I don't keep them under the microscope for very long... no more lessons there, I think. 

I've been lucky enough to have quite few "WOWIE!!!" days, too, so it all balances out. And all of you have participated in some of my "WOWIE!!" times - - like, one of you was born, . . or graduated. . or married . . the good stuff of life.

Love you all.

Beth

SIDESTEP: Second Opinion, Simon Cancer Center, IU Hospitals, Indianapolis

Guarded good news: [and slightly incorrect] My PDL-1 protein level is high enough to to begin KERATRUDA therapy right away. It is one of the new immuno-therapies showing excellent results.[It is in pill form;]Keytrnda (sp?) very expensive-covered by insurance (checking that out). I may also be a candidate for the new therapies that work with DNA/gene indicators. The results are not in on already-tested EGFR and there will be further testing on two other gene indicators if EGFR is not positive. No chemotherapy and, since the pills work through the blood stream, it will treat the adreno-carcinoma wherever it exists in my body. That drug would be, for the medicos in the family, Tagrifsu. 

I probably won't regain my voice; BUT before you think that might not be all bad, I have installed "megaphone" on my Iphone and am waiting for the speaker attachment to arrive from Amazon. 

Not so good news: The cancer has spread from the left lung to the right, involving the bunch of lymph nodes and blood vessels that come together in the center chest, under the sternum. It also has migrated to some bone locations and, as mentioned before, the liver. Dr. Durm, of the Simon Cancer Center was optimistic that I could get some shrinkage of the tumors through this process. I intend to take each good day and make it better, every bad day (and there will be some--these therapies are not without side effects) I will jump in bed, cover up my head, and feel sorry for myself. No help needed there!! I have plenty of self-empathy to last a while!

As with every such crisis, there are also blessings that come with them, and I am certainly going to count them every day as well. I am keeping a diary and may share some of that with you along the way. Ralph and I can laugh about it occasionally, and he is my strong right arm.The staff and residents who know my situation are very helpful and understanding. There is an extraordinary woman here, Jenny Kander, who made me a "dammit doll!" She is a published and recognized poet and maker of storytelling rustic dolls. Each doll has a background story--a bio, so to speak--and they are very popular. 

Here is the poem that accompanies the doll:

DAMMIT DOLL

Whenever things don't go so well

and you want to hit the wall and yell,

   here's a little dammit doll

   that you can't do without.

 Just grasp it firmly by the legs

And find a place to slam it,

and as you whack the stuffing out

yell: dammit!dammit! dammit!

And here is how you (mis)use this dammit doll:

Poor defenseless doll has no arms! I may get upset enough to give it a lick or two, but it nice to know that it's there if I really need to do so!!

Beth

. . . DETOUR!! On the Way to Where I Thought I Was Going

It is October 3rd and, as many of you know, I had a PET scan and an MRI this morning to get more information ab out a very surprising and upsetting diagnosis of lung cancer. I have set up this page for those in my most immediate circle of relatives--Van Vorsts, Greenes, Grays, and Carl and Connie Brorson--we've weathered a lot together. I am so very fortunate to have many of you who have expressed their good wishes and interest in what’s happening. I will use this page to do that. I won’t dwell on details and I know this sort of page isn’t for everyone. If you don’t want to know, don’t tune in and I will still honor and love the bond between us. Everyone, no matter the age, actually has only one day at a time. When the sun rises and you see it, it is a great gift. As one enters their 80s, the body sends signals that remind you, once in a while, that there are less “tomorrows” than you have had of “yesterdays!” When one receives a diagnosis as I have, it is still one day at a time and I want to make each one of those days a blessing for Ralph and me and to share those blessings with you, dear invitee. What I ask of you is to occasionally drop me a line through this group, or through Messenger or email.

 I AM NOT DISCUSSING THIS ON MY FACEBOOK PAGE. If you think of a funny family story or a quickie “hello,” let me know it. I am still feeling well—fatigued, no voice (which is, by the way, a result of the cancer), and I do the Cleese “silly walk” occasionally (I’m not that good, actually. He was in town recently and that is what made me think of it).  I am still walking on air because four of my grandchildren and two of their spouses brought two of the GREATS, Hanson and Carter, to visit and we were able, en mass, to meet Luna, Jeromi, Betsy, Ry, and Katie’s 10-week old white Labrador—who is, I am positive, going to be as loveable as Jennifer’s sweet Lab, Cricket. Sarah, Ralph’s daughter, and my brother, Jim, were both here as well. I could hardly concentrate on the testing this morning or think about the diagnosis because my heart was full of the weekend!!. I also got an up-to-date photo of Daniel Wayne Terhune III-DW3 or “Three Sticks” as he is known at our house. So—keep it light and I will, too—I’ll give you the lowdown and you keep me in your thoughts and send me a “hello” once in a while!