Day 92

The Ordeal...

Here is a small narrative of the past 36 hours, which I will assure you from the beginning, has a happy ending.

Tuesday, 4/24

10:00am: I confirm after an hour of staring at mom's NG tube that it is not working. After close analysis of my constant companion, the GOMCO pumping machine, I discover that the problem lies not with the position of the tube from my mother's end (a solid relief since we've learned that means a trip to the ER),  but in fact from the manufacturing end of the machine. No suction.

10:01am: I call the hospice hotline to report the problem and I am assured by Martha, the lovely and apathetic Nurse Mgr., that a new machine will arrive via Apria Healthcare soon.

2:15pm: Apria Healthcare delivery arrives with a new box, which they switch out for the old one. Alas, it is still not working. I am then told by the driver that it takes a while to get the thing working. We wait. It's still not working. He calls whomever with his walkie-talkie and he is advised that it will take an hour to get started. This is not so,  I tell him. I am quite familiar with this machine after 2 weeks of use, I explain, and it should be working. It takes an hour, he says. Please sign here. I sign, more to get rid of him than to appease him.

2:45pm: I call the hospice hotline again and speak with Martha, who is again understanding, and she tells me that a nurse will be out to help with the machine. She is also going to ask Apria to bring another machine out just in case.

5:00pm: I receive a call from a different Apria driver who tells me he is supposed to bring a new machine out though he confesses he's not familiar with the device and then begins to ask me inane questions about a machine he doesn't himself understand. I ask him not to call me, but rather to speak directly with hospice to arrange the delivery. What's hospice, he asks. I breathe in. I breathe out. You know, I think, I've been waiting for a reason to let off a little steam. Now's as good a time as any. After he fails to grasp my explanation of hospice, I hang up.

5:30pm: I call hopsice again and ask them to take over full control of the situation as I am losing patience. All this while my mother is not getting drained.

6:00pm: I get another call from Apria.  The same guy. He doesn't improve. We argue. I hang up again.

7:00pm: I get a call from hospice (it's Margaret now) explaining that they've spoken with so and so's supervisor and a new device will be delivered. I also hear that the hospice nurse has been delayed by an urgent patient and will arrive as soon as she is finished.

7:45pm: I get a call from Apria again. Different tone this time. He's very sorry. He's leaving San Jose and picking up the machine from Menlo Park.

7:55pm: I call hospice again. Again, Margaret is a joy to talk with. She asks how I'm doing through all this. I tell her the truth. She understands. She then offers the first practical solution to helping my mother in the moment that I've yet heard: if you feel up to it, she says, I can walk you through manually draining your mother's tube in an effort to relieve some pressure. Agreed. Success. Relief.

9:00pm: Apria calls from Menlo Park asking for my address and directions. Really?

9:15pm: Chris, the hospice nurse calls. She's in San Jose. She needs directions. This takes far too long. She's on her way.

9:30pm: Apria arrives with the machine. I leave the room. John stays and it's a good thing too, because after the Apria guy breaks the new filter for the new machine, John realizes that the old filter is the problem... not the machine. It's water logged. So, we've discovered the problem, but again are left with no solution. I'll put an order in tomorrow, the driver explains. It should get here Thursday. No, I say (I'm back). She needs it sooner it's urgent. He repeats himself. I sign his paper. He leaves.

10:00pm: Just as Apria is leaving, the nurse pulls in. I explain about the filter. I explain about the machine. She is thorough and agrees it is not working properly. She takes mom's vitals. Is content she's in no immediate danger.

10:45pm: Mom is finally able to sleep.

Wednesday, 4/25

9:20am: Martha from hospice calls. She has reviewed the notes from last night. She apologizes again. No, it's still not working, I tell her. A filter in the mail on Thursday, I tell her. No, it's not acceptable, I agree.

1:30pm: Apria arrives. New driver. He brings 2 filters. Could you set it up please? It takes an hour to get started, he says. That's incorrect, I repeat and repeat. He sets it up. Let's test it, I suggest. Marvelous! It works - and we didn't have to wait an hour!

2:00pm: I hook mom up to the machine. It's not working. I wait. I fuss. It's not working. John comes home. We wait. We fuss. It's not working. I breathe in. I breathe out. Leave it alone, mom says. I'm fine. It's still not working. A little morphine. A pull here. A tug there. A little suction. A little pleading from my soul.

3:00pm: A little of John's magic touch. It's working! We put mom to bed, where she rests now. In the comfort of a functioning NG tube. I told you... happy ending.

I'm only sharing now, because... well, because I needed the therapeutic exercise of getting this experience on the outside of my being. Also, although this was a rare complication, it is the stuff of our everyday. I'm not complaining, I'm communicating. So, please forgive us if we're not quick to respond. If we seem frazzled or over-exhausted.

I feel like a new parent. Clumsy, unsure, restless and bumbling. All of your encouraging words have meant the world to me. To us. Please know that even if I don't respond right away. I'm reading. I'm appreciative. And, most importantly, I couldn't do it without you.

Day 90

It's hard to believe that it's only been 3 months since the first day of Mom's diagnosis. Time, a powerful fourth dimension though it may be, does not command the growth of our lives. Some lessons may come gradually over years, even decades, and yet other life-altering awakenings occur spontaneously in a single moment.

Not only am I not the person I was 90 days ago, there have been countless iterations within that span. It's happened to of all of us in some way at some time, hasn't it? You go to bed not even knowing what your lacking and wake in its fullness. An epiphany. A humbling death met with a swift resuscitation where the air itself feels different, tastes different. Sure we can revert and go back to our old way of looking at life, but we're not really returning. We're bringing something entirely new with us, regret. Regret is a fertile creature too: Depression, Shame, Contempt, Self-Deprecation, Doubt, Cowardice. Though growing pains can be unbearably severe, the slow creep of death has a far greater sting.

We all change and in many ways. But, it seems the time-bending changes happen more often when change is thrust upon us by some unforeseen event. So, I am new today. Today I am not reading the story of my life, it is being written as we speak. Each new loved one who asks, how are you doing, summons me to search this new person for an answer. It's good that they ask, because I'm neglecting that interview with myself all too often these days. My answers are different every time.

Sometimes I even find myself answering with how Mom is doing, which seems inextricable from my own feelings. Yesterday Mom explained quite lucidly and with great fervor that she wants to be more a part of her own house: daily tasks, menu planning, various projects, etc. Things with which we did not want to burden her. But, as it is my mother, it is more a burden for her to be on the outside and feeling useless. She still has something to give in the midst of all this and she won't be robbed of that opportunity - not even by me.

Today change comes to me more as a challenge than a violent force. Do I have the courage to watch Mom use what little life she has left taking care of all of us? Do I have a choice? Not really (she's a Seufert woman), but I can choose how I respond, how I listen and whether I learn.

Day 87

My mother is still teaching me. For that, I am forever grateful for this day with her. Today she challenged me to listen.

To truly listen to her as she communicates her needs.

To truly listen to her in the smallest of decisions knowing that autonomy is a human right.

To truly listen to her in the difficult decisions that are easier to make once and then walk away from, but are essential to visit and revisit until her voice is acknowledged and her heart at peace.

My Tia and I made a trip to the ER this morning at Kaiser Redwood City because mom's NG (Nasal Gastric) Tube had come out of her nose partially. The nurses were kind, thorough and adept, which made our tiring 6 hour stay much more bearable. They replaced the tube gently and gave us some tips for future maintenance, which have been very helpful. Apparently, NG tubes are not typically used for this long. I can imagine why.

We had a couple of visits planned today, but I'm afraid the day just got away from us. For those of you who where not able to come, I'm truly sorry and will get in touch with you about rescheduling soon.

I confess I find myself weary today. Laid low by a world that insists on turning when it ought to know damn well that time stands still for this moment. Each day comes with its distractions and demands on my time. I make lists that sit scattered about the house met more with good intention than accomplishment.

Slow down, she says. Just go slow.

She still gets frustrated with me. She still gazes at me with those adoring, all-knowing eyes that turn me into a child again. She still flips me off. She still hugs me longer. Today my mom is still my mom. Today I have her and stubbornness and her tenderness and her wit. I saw all of those beautiful faces today. I was sad today, but I was strong. Because tonight my mother wished me good night like she has so many other nights.

Sleep with the angels, baby girl.

A Visitor's Guide

You have all been so wonderfully patient and understanding with your desire to see mom. So, I thought I'd put up some information that might help you schedule a visit if you would like to come.

First, 3-5pm is the most reliable and convenient visit times for us.

Second, we find that 3 people or less helps mom engage and enjoy conversation without taxing her too greatly.

Third, 20-30 minutes is ideal.

Fourth, if you or a member of your household is ill, I'm very sorry, but please phone to speak with her as we are trying to keep her environment free from infection.

Fifth, please phone us to let us know you're coming. The houseline is fine.

Sixth, please forgive us if we need to cancel at short notice.

I hope that's helpful. I'm really just trying to communicate our needs in answer to many who are asking. Please feel free to call, I'd be happy to talk with you.

Day 80

Hope.

It is so easy to lose hope. It takes courage not to let the grief of the loss that has not yet come steal the hope of what still can be. There is a dark, warm and inviting room that beckons the tormented to come and sit and forget; to close our eyes to the gnawing pain of a loved one in harm's way.

But, when we hole up too soon, we also close our eyes to the beauty, the wonder that it is before us. Hope opens your eyes. Yes. We see suffering more clearly. We also see miracles: the power of love when family comes together.

I ask you to hold tight to hope with me. Your hope gives my hope strength.

Mom's condition has progressed with great speed. She is returning home today from a brief hospital visit after her digestive system was not able to process food due to the spread of the cancer to her intestinal area, her stomach and her lungs. After consulting with the doctor's and talking with mom, we have decided to bring her home with hospice care.

I know many of you want to know how to help and the only thing I know to tell you is:

Do not lose hope. Our family may reach out to you for some practical needs and if you have anything you'd like to share or bring, you are welcome. Joshua came home last night and I know he'll need your support now too. We all do.

Thank you for joining us on this journey and know, the journey is not over...

Day 72

I can't tell you what a comfort it is to know that so many of you are out there reading this right now. You are each so essential to our lives and make them all the more meaningful with your continuous support.

Mom and I successfully got through out tests yesterday. I'm still awaiting my results, but we did meet with Dr. Pan this morning to discuss the results from mom's CAT Scan. As it turns out, the Folfirinox was not as effective as we had hoped. Although there are signs of improvement on the tumor in the Pancreas, the lesions on her liver have grown. She also has some accumulated fluid from the liver, which we'll need to keep an eye on.

So, our next step is to change her treatment from the Folfirinox to a combination of Gemcidabine and Tarceva. The Tarceva (a protein inhibitor) is a daily pill, which she's already begun taking. Gemcidabine (the chemo) will be given every week for one hour. She will have 3 weeks on, one week off and so on beginning next Tuesday. After 2 months, mom will have another scan to see if this new regimen is successfully halting the growth of the cancer.

The good news is that the side effects should be more manageable for mom. My hope is that she will find a renewed energy and appetite. Thanks to your support and encouragement we were successful in coping with the last treatment as I'm sure we will be in this. Please let me know if you have any questions, I'm here.

My love to you all.