readmission UCIMC day 6

I am so jealous of patients who are walking the hall without an escort. I am connected to a lung machine and to an IV, so every move I make needs to be coordinated and choreographed. Turn this way, step over the tube, turn the other way now and step over the other tube. Like some perverse game of jump rope, except I’m not doing any jumping.

I have an endless array every day of doctors and nurses and aides coming in and out of my room. Probably the worst is the three o’clock in the morning visit from someone who needs to know whether I have urinated. Why this question must come at 3:00 am when I am snuggled into a deep sleep and answer their question like a zombie, I have no idea. I just know that I am completely out of it at that time and hugely unhappy to be awakened for what seems like very silly timing for an even sillier question. After that they start coming in every hour or so around 4:00 or 4:30 to take blood, vitals, give me new IVs, pills and so on. I am on autopilot by that point.

Today I need to catch up on the afternoon that I lost yesterday after the unfortunate conversation with the doctor who introduced the topic of end-of-life decisions just before lunch. I still cannot bring myself to deal with that topic in the way she wanted to, so I think I will make a note to tell her that I think that when it comes to such serious discussions, some sort of prelude or sneak preview might be in order. I was ready to eat breakfast, and along comes Dr. Palliative Care-End-of-Life-Decisions and says I need to decide how I want to spend my time. The options she provides are enduring the agony of chemotherapy which will require endless trips to the doctor, possible infections and the dangers arising out of that and the side effects or opting to go without chemo (treatment) and go home and enjoy what time I have left free from the miseries of chemo. I was in complete shock because I did not at any point since learning of my progression believe that I am now at end-stage. Won’t I know in my heart that this is the final dance? I think I would. Instead, I am ready for those steel toe boots so I can dance-kick my way toward a little longer time on this earth.

Besides, I don’t want to have such a serious conversation with someone who is NOT my oncologist. Such a conversation needs to happen with her so we can discuss the reality of my remaining choices. As it stands, I thought, based on my oncologist’s discussion with me that I still do have some choices. I also know that she will level with me when it comes to the time that chemo might not do enough good to outweigh its negatives.

It is curious how vulnerable one is when feeling sick and scared. My fear had diminished when I had talked with my oncologist who shared the plan that we hope to engage after fighting down this infection. But all of that went down the tubes after Dr. PCEoLD ruined my lunch and, frankly, entire afternoon. I ended up a puddle of nerves and tears. I have rethought it all and realize that she meant well, but I think that serious discussions like that should not come up as casual hors d’oeuvres before dinner. Serious discussions about end of life should have a formal invitation with an agenda and the opportunity to bring a guest or two. It should not be a casual meet and greet. Next time it will go differently, I assure you, as I will write a set of instructions for whoever plans to conduct such a session.

In the meantime I had a PT session that went very well. I might have even made up for yesterday. I walked the circuit at a good pace, enough to breathe deeply without getting out of breath. Then, I took a break. After the break I told my PT rep that I wanted to dance a routine that combines a lot of different movements to see how far I could get through. I did that, and it was more than taxing. I made it through the first chorus before needing a break but then continued a bit more before having to sit down. After another break I walked the circuit again at a decent pace. I feel good now.

Also, my oncologist stopped by and we talked about the treatment agenda. Eribulin (Halaven®) on days one and eight of a 21-day cycle with Neupogen® for the intervening days. We will start day one here in the hospital after infectious diseases clears me. If the port needs to come out, they will give me a PICC line to use for the eribulin infusion, which will be a brief 30 minutes or so.

Thanks for all the good wishes. In the midst of hearing so much plain bad news, I read your notes over and over. Know that you make me smile and want to get out of bed or off this chair and dance.

5 6 7 8
© 2004–12 Donna Peach. All rights reserved.

Advertisements

15 responses to “readmission UCIMC day 6

  1. I am sitting here gasping. No words. Just good thoughts.

  2. Donna,
    I wish I were there to hug you and look into your eyes. Instead, I’m sending my love and saying I can only imagine how scary and difficult it must be to have arrived at this point. End of life is not an easy thing to think about, but we’ve all gone through that in our minds: How much agony and suffering is worth added days? I don’t know what your thoughts are on that, but know you will be guided to the right decision for you and Marvin. In the meantime, I continue to send love and say prayers.
    XOXOXO,
    Brenda

  3. Roni (RaptorRapture)

    I will relay this short story for you. My husband, Ned, was diagnosed with brain cancer at age 34. We were told he had only a short time, 20 weeks, to live. Of course, we denied that right off the bat and went into the whole routine of chemo and radiation. We tried to ignore the obvious cancer. Upon our first visit to the chemo clinic, one of the nurses there asked Ned in a very loud, and I thought obnoxious manner, did he know why he was there. What was wrong with him>? What was his prognosis? Now, mind you, I had spent weeks getting him past the hump following his surgery for a biopsy that left him partially paralyzed and unable to speak clearly. He was in relatively good spirits for a man fighting for his life. Then she did this whole thing in about 3 minutes that turned everything upside down for us. i was furious! Just furious! In retrospect, I can see that her objective was to make him face what kind of fight he had to deal with. But at the time, I thought she was a cold, heartless bitch who would never earn my trust or his. Point of fact, she became our best friend. The person who we knew would tell us the whole truth, no matter what. At some point, that is what you want, even when you are still fighting. What you don’t want is the timing…and they seem to not have that part figured out. You know you have cancer, and you know it is Stage IV breast cancer. you have done your research, you have consulted with the best, you know how it can go either way. What you don’t want is pre-dinner conversations that force it on you like unwelcome brussel sprouts! If they only knew! And I expect you will make them very very aware of it, as I did! As for knowing in your heart…I agree. you will know deep inside of you when the music is stopping. And that is a call only you can make, and the rest of us support. So, don’t let someone unplug your jukebox until YOU know it is time. Your journey is your own, not hers, not mine, not anyone else’s. There are miracles every day. There are people who make up the whole gamut of statistical information…those who give up quickly and those who love life and fight on. You can make that decision yourself. I hereby give you a stick…you can either use it to conduct the orchestra and dance, or use it to bash the heads of those who will insist the dance is over. It’s your call, Lady. Until then…I still hear music…how about you?

  4. You need those boots for Dr. PCEoLD! Hope you can feel all of us with you, giving you strength. As always, sending my love and prayers. ♥

  5. sending you a big [[[[hug]]]] today and smiling while I imagen you dancing through the room with no care in the world.

  6. Your decisions must be your own and only you can call it. Your strength is unbelievable and the music you dance to is the best!! I am sure that people mean well but sometimes their timing and bedside manner is lacking. Keep dancing and know that we are all still praying for you. A friend from the Cottonwood family:)

  7. I can only imagine. My darling beautiful Peach of a gal with the most beautifully wise and creative brown eyes…I see you beginning a new choreographed dance. Difficult steps to be sure, but I know that inner strength you have, I’ve seen it in the short time I’ve known you, you will handle all those wonderful steps with grace and agility. Sometimes on your own, many times with the best dance partner I can imagine for you!!
    Next time, you’ll be braver, you’ll be your own savior, dancing on your own two feet when an uninvited discussion trys to creep in. The good news was…it made you more resilient. Love to you and Don…you keep dancing!

  8. I just read yesterday’s and now today’s posts. I send you cyber (((hugs)))! Rooting for you from the east coast and sharing the outrage of all your other commenters…AARRGGHH!

  9. No one can tell you when “the end of life” will be the end of your life. Three months, six months. The only one that knows, is the Lord, in my view. I’m not buried yet. Nor will I be anytime soon! As you know, it gets worse before it gets better. You’re not dancing so good right now, so I’ll dance a bit for you! I have no fear for you. You will be just fine!

  10. Donna, I believe you are well qualified to write instructions that will improve the bedside manner of anyone. Maybe you should tape a draft of said instructions next to your bed . . .

    By the way, we are all dancing with you in our steel-toed boots.
    Blesssings.

  11. Donna, you must keep dancing, hard as it may be. It sounds like you were feeling better after that. Just breathe…deeply and turn fear into faith. These Dr.’s lack basic tact. I can tell you, my Mom had similar stories when she was 1st diagnosed. If I wasn’t 3000 miles away I would have gone and slapped one of her nurses. I read this whole blog to my Mom (a breast cancer survivor) who feels your pain and journey from afar. My prayers are with you and you are right, you will know when you’ve had enough. There’s still a lot of fight in you so just keep fighting, you’re a pioneer for the others that sadly must travel this rocky road. Much love to you always,
    joey~

  12. Cry when you need to Dear Donna and then keep fighting like hell! (Maybe tripping that Dr. (accidentally) with your walker might not be a bad idea either.
    Good vibes headed your way…always.
    -Pam

  13. I read your daily updates and though I rarely comment, I say a prayer for you and wish you the best. The insensitivity of that doctor absolutely floors me.

  14. Love and hug’s to you Donna, your courage and tenacity make me speechless. Your a wonderful woman keep on dancing.

  15. Thinking of you and praying….
    “Tune me in to foot-tapping songs,
    set these once-broken bones to dancing.” (Psalm 51)

    Just a woman who found your blog and hopes to give encouragement to your warrior dance.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s