I’m not dead yet…

…but it probably won’t be very long. You know, reality can be a tough pill to swallow some days. You want things to go one way; life seems to be pushing you in another direction.

This is what happened to me this week. Both of my oncologists have confirmed that there is nothing really more to do. The cancer is taking over this tired old body. The chemo (Gemzar) isn’t really working, and there aren’t any more systemic options that don’t process through the liver. My liver is full of mets–both microscopic and significant. We thought about seeing a gastroenterologist, but the chances of a stent in one or more of the larger lesions bringing long term hope and correction is nil. It’s more likely to cause an infection. It looks like the cancer is spreading to my cerebellum, and there are more bone mets than before. It was a truly depressing PET/CT scan, but it told the truth. My body is dying, even through my heart and mind feel more alive than ever before.

Oh yes, my friends, I’m still praying for a miracle, and I will right up to my last breath, and I ask you to join me in this prayer. I’m also asking for prayers for peace, strength, and courage to face whatever lies ahead. We just never know.

Image: “Last Will & Testament,” Ken Mayer, Creative Commons LIcense

What I’ve learned so far this week from my teacher cancer:

  1. Be prepared. Have your will, healthcare power of attorney (or Five Wishes) and POA updated BEFORE you really need it.
  2. Make decisions about what you want done with your body and do whatever is necessary to ensure those decisions are carried out. We’ve had to scramble a little bit because of Maryland’s way of handling body donations to science.
  3. Make sure you’ve handled things like getting a handicapped hang tag for for your car before you really need it.
  4. Don’t wait to call Hospice until it’s too late for them to make a difference.
  5. Do talk honestly and openly to your loved ones about what is happening, how you are feeling, and what they are feeling.
  6. People will want to help, but they will often be anxious and afraid to ask you what you need. If you need meal help, ask for a meal train to deliver meals that can be frozen and reheated. Don’t be afraid to tell them what you can and can’t eat.
  7. Friends and family will want to see you, and you will want to see them. Be realistic about what you can and cannot do. Avoid completely tiring yourself out with visitors. Consider FaceTime and Zoom as options.

Above all, don’t let cancer or whatever illness you have steal your joy. Avoid worry. Treasure each day, and love like there’s no tomorrow (because there may not be). Know how deeply you are loved by your Creator and by friends and family. Sure, your favorite people may act a little squirrely and uncomfortable because we don’t do death and dying well in our culture. But draw them in and keep them close, even if it feels awkward.

Finally, don’t pull away from my journey just because it feels like I won’t “win” the battle. Let me show you what it’s like to lean into the Creator of the Cosmos and die to self and this life. Let’s walk as love in action to the next phase of reality. I promise to be honest and straightforward, and I will answer your questions. Your support in walking with me means the world. Thank you.

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.