I shouldn’t be writing this, but I am…

so please keep those positive thoughts and fervent prayers going! They truly do matter and make a difference.

Image: Gebet, Prayer, Kurt Stocker, Creative Commons License

My liver has been quite uncooperative of late. Actually, my oncologist now thinks the liver has been involved all along since my initial diagnosis included a large pleural effusion and ascites. The taxol and abraxane and Ibrance have just kept things in pretty good check. Fortunately, the ascites has not returned (knocking furiously on my noggin), but the pleural effusion has been a periodic and unwelcome visitor.

If you saw my last post, you will note that we’ve taken more aggressive action with a PleurX catheter and a change in chemo cocktails. The Abraxane was working beautifully until one day it just took a nasty turn in the wrong direction. It happened fast, too! I remember telling Dr. Mehta when we started Abraxane that it would either work well or it would annoy the cancer. The latter is the path the cancer took, so we started last month on Gemzar (gembicitine). This is a rather old chemo drug as such things go, and it has the potential for some nasty side effects, but it also has the potential to reverse this trend. So bring it on, Gemzar. Let’s sparkle and glitter like a pink unicorn and send these micro liver lesions and the accompanying inflammation into apoptosis!

It is a scary time for Rob and me because last Tuesday, based on my labs, Dr. Mehta was ready to have a very different conversation with us. Yet he admitted that my clinical presentation did not match my labs. My bilirubin is climbing–this week 16.5, but my alk phos levels are falling some. I don’t look as jaundiced as I should be, and I have enough energy to walk a mile or two (albeit slowly) and climb three flights of stairs. I’m not confused, and my appetite is improving. My symptoms of being a lovely shade of yellow and itching like a dog with fleas are manageable. It doesn’t make medical sense, but Dr. Mehta says he has seen this happen a couple of times before. So here’s to medical anomalies and miracles.

Image: A Bouquet of Prayers, Ajay Goel, Creative Commons License

Friends, the only thing to which I can attribute all this is my faith in the cosmic Christ, the one who holds every atom and molecule of the universe together, and who hears our fervent prayers. Sure medical science helps, and these tools have been given to us by God and healing hands raised up in divine power. Whether one identifies as Christian, a practitioner of any of the world’s religions, or someone who simply believes in the connectedness and sacredness of all creation, we are all on the same page when it comes to desiring wellness and wholeness for ourselves, for one another, and for creation.

So thank you! Thank you for your ongoing prayers, good intentions, and many kindnesses. They keep me going. They lift me up. The allow the glory of God to be shown through this process. Thank you.

I do have some specific prayer requests if you are able: 1) please add me to any and all prayers lists at your houses of worship; 2) I would seek specific prayers for the cancer to cooperate and exit my body; 3) that the divine will for my life will be realized; and 4) that although I am not afraid to die to this life, that I will be given more time to live, laugh, and love. Above all, I pray that Christ will be glorified in, by, and through whatever wholeness, healing, and life there is to come. Thank you! To God be all the glory. Amen.

Image: Prayers at Western Wall Temple Mount in Jerusalem, Asim Bharwani, Creative Commons License

Finally, friends, treasure each precious day of life you have. The present is all any of us is truly guaranteed. So live boldly, love lavishly, and make this world a better place for all people with all that you can.

You can’t always get what you want…

…but if you try sometimes, well, you might find you get what you need.

This snippet of lyrics from the Rolling Stones kept going through my head yesterday while I waited in pre-op at Upper Chesapeake Medical Center for my turn to go to the operating room. I was there to have the dreaded PleurX indwelling catheter installed. It wasn’t what I wanted at all, but it turned out to be exactly what I needed after all.

Image courtesy oncolink.com

Note: For those of you who are curious about a PleurX catheter and why it’s needed read on. If you’re not interested in detailed medical information skip down past the image and start reading again.

You may remember from past posts that my liver has been rather uncooperative for the last several months–since last summer when the cancer decided to take up residence there. Your liver is critical to your body’s overall functioning so this has not been good news at all. Since December I’ve had increasing bouts with pleural effusions. These collections of fluid gather in the pleura, a two-layered membrane that surrounds each lung to cushion and prevent friction as the lungs expand and contract. A small amount of pleural fluid resides between the layers to keep things moving well. Unfortunately, sometimes liver metastases can send extra fluid upward into the pleural space where it basically becomes trapped and pushes the lung upward. This in turn causes breathing problems and spreads cancerous cells. There are three solutions to the situation:

  1. Thoracentesis: I’ve had about half a dozen of these in two and a half years. It’s usually an outpatient procedure guided by ultrasound in which a surgeon inserts a needle into your back or side and uses a vacuum bottle to draw off the fluid. Theoretically, the lung will expand and all will be well. Sometimes, like with me, the fluid will return and eventually cause atelectasis (partial lung collapse). Relying on this procedure repeatedly puts one at risk for the fluid to collect in several discrete areas that makes drainage more difficult or impossible. Cancer is tricky.
  2. Pleuradesis: This is a permanent surgical solution that uses medicine, usually talc or doxycycline, to fuse the two layers together. This was what I had hoped to have, but my lung would not fully expand, so it was not an option. There are risks such as procedure failure, infection, etc., but then no medical treatment is without risk.
  3. PleurX catheter: This is a surgical procedure where the surgeon inserts an indwelling catheter into the pleura. The catheter hangs out of your body several inches, and you are able to work with a home health nurse or drain the catheter yourself using medical supplies and vacuum bottles delivered to your home. Eventually, the drainage should slow enough or stop completely, and the catheter is removed. My very excellent thoracic PA, Kevin, says that sometimes the pleura will even fuse on its own since the catheter is an irritant. I will do all I can to help that process by using my trusty spirometer.

No, it’s not what I wanted at all, but this morning my coloring was already better, and I have more energy. I have been able to eat more and move better; even stairs are easier. This is a good thing. Those who live with metastatic disease know that cancer can turn on a dime, and that disease progression is a reality that cannot be predicted. You learn to live in and for the moment. You begin to grasp the preciousness of each day. You treasure the texts, cards, small reminders of love and care, and some days you get a special lagniappe like I did when I arrived home from the hospital–a beautiful flower arrangement from our friends B and K. Thank you, friends, for making my day, my birthday, and my life so much brighter.

Whether you live with this precarious reality in your life, or whether your life is just peachy keen and dingle-dog-dandy, don’t take one breath for granted. The present moment is all any of us really have. Let us remind one another of that fact by not taking anyone for granted; love lavishly, serve generously, and give prodigally. The one with the most toys still dies but doesn’t get to take any of it along for the ride.

I get by…with a little help from my friends

Toasty warm in a matching handcrafted set by my dear friend, Sarah.

It’s been a challenging year for all of us, and frankly I’m glad to see 2020 pass on by tonight. My prayer is that 2021 will be a better year for all of us. It can be if we lean in, strengthen our web of connections, and pay attention to life.

Living with a chronic and/or terminal condition can be a lonely, confusing, and difficult journey. Most folks are really good about responding to the initial crisis, but when it settles into weeks, months, or years of treatments, medical procedures and appointments, and life adjustments things can get complicated. It’s tough to know what to say or do when your family and/or friends are hurting. My advice? Each person’s situation and needs are different. But try. It’s better to be awkward and say the wrong thing than to say nothing at all or just slip out of contact.

For me the situation is two-fold. First, I don’t like to bother folks with my problems, and 2) it’s one of my growing edges to ask for and gratefully receive help. Thankfully, many good friends and my amazing extended family continue to pray and walk with me on this journey, and that makes all the difference in the world.

Last week I wore this new hat crafted by my friend, June.

When I see your posts and “likes” on Facebook in response to my blog entries or posts, it does wonders to pep me up and keep me going. When a card or note arrives in the mail, it’s a big boost. Why? I know that prayer works, community matters, and people care.

Recently I received gifts of beautiful handcrafted (and WARM) hats and accessories. When I wear the hats and scarves or when I cuddle under a gift blanket during chemo, I carry you with me, and I am blessed by your ministry of presence and caring. When I gaze on the beauty of flowers (a luxury I rarely allow myself to purchase), your love and care are right there. Yes, presence and caring; even though COVID is keeping us apart, it’s these tangible signs of your love and solidarity keep me bounding up that staircase at M.D. Anderson–Cooper on the wings of eagles to receive my chemo and fully and faithfully live another day.

A friend and colleague who is also undergoing cancer treatments sent me this awesome sticker that now graces the front of my treatment notebook. Thank you, Courtney! Not 2021 Cancer!

Right now, most cancer patients cannot even have someone accompany them for treatment/procedures in an effort to keep us from COVID exposure. Little things like notes, texts, and practical expressions of love and support–like warm hats and socks and kind encouraging words–stand in for the lack of face-to-face time with friends and family.

On this last night of 2020, I want to thank all of you for the many ways you have lifted my spirits, augmented my courage, and kept me strong during a particularly grueling few months. I love you all and am so grateful to be a part of this wider, stronger web of connection that just continues to ripple across the cosmos. To my many friends, family, and colleagues who are living with chronic and terminal conditions, please know that I hold you in daily prayer. We are all stronger together, and don’t forget: We all get by with a little help from our friends. Thank you! Happy New (and better, please) Year!

Love your liver

I must admit that I’ve never been a big fan of liver. Maybe it goes back to having to eat it as a child, once even cleverly disguised as country fried steak (no amount of breading and gravy can hide that distinctive taste). The only way I can stomach it is all jazzed up as pate.

Image: Wikimedia Commons

While I may never love liver, I am learning to love my own liver. I never gave it much thought until I was diagnosed with metastatic breast cancer. Then I began to understand just how important this strange looking organ is as I watched various numbers on my lab reports start to go haywire this past summer, things on my comprehensive metabolic panel like alkaline phosphatase, ALT, and AST. What followed was a series of tests to try to figure out what was going on: a liver biopsy, an MRI, a PET/CT, and a triphasic CT. The PET/CT and triphasic CT finally revealed the presence of metastatic liver lesions.

This would explain the sudden weight loss, the inability to digest my food fully, the presence of repeated plural effusions and ascites. Within a span of days I went from walking four or five miles a day to barely being able to walk up the stairs. It was scary stuff. Add to the physical issues the fact that we were also moving to a new state and had to get a house on the market and packed up. Yikes!

Fortunately my new oncologist wasn’t overly worried and felt that the chemo we already had planned to address the rising cancer markers would also address the liver mets. And if it doesn’t, he told me, there are other ways to address them. So while what was a minor bump in the road turned into a pothole of sizable proportions, it is nowhere near the end of the road. My markers have come down significantly after only one cycle of Abraxane, and my liver numbers are stable or dropping. Whew! Come on little yew tree with your bound protein molecule, do your thing to bring this body back into balance.

Image: Wikimedia Commons

What’s the point of this post? Learn to love your liver now–before you are diagnosed with liver mets and/or stage four cancer. Begin an anti-cancer lifestyle now and take care to the best of your ability of your body for you are fearfully and wonderfully made. Whether you love liver and onions or despise the stuff, well, that’s your call.

Check out these facts about your liver and read more about this fascinating organ here:

  1. Largest glandular organ – Our liver is the largest glandular organ of the human body and the second largest organ besides our skin.
  2. Multifunctional – Our liver simultaneously performs over 200 important functions for the body. Some of these important functions include supplying glucose to the brain, combating infections, and storing nutrients.
  3. It contains fat – 10% of our liver is made up of fat. If the fat content in the liver goes above 10% it is considered a “fatty liver” and makes you more likely to develop type 2 diabetes.
  4. It stocks iron – Our liver stores important vitamins and nutrients from the food we eat and stocks them up for when we need them later.
  5. Detoxifier – Our liver detoxifies the harmful things we take in like alcohol and drugs. Without the liver the body cannot process these items.
  6. Creator of blood – The liver creates the blood that circulates in our bodies. In fact, the liver starts producing blood before we are born. Without the liver there would be no blood and no life.
  7. It regenerates – Our liver has the amazing ability to regenerate itself, making liver transplant possible. When people donate half their liver, the remaining part of the liver regenerates the section that was removed.