Lost Time, Lost Self

How did it get to be February already? It was just the beginning of the year. Time has lost me, or I have lost it.

Slightly over three weeks ago, I wrote about the intense fatigue I was experiencing, despite the transfusion of two units of dark red blood. I was shot of breath, too, and feeling, well, old. The day after I wrote that last blog entry, I went to work for a full day, and by 4 PM, the last meeting of that busy day, I was sitting in the conference room with a coat on and a blanket, shivering and panting. My boss took one look at me and said "go home!". But I had my coaching session that night, (which has turned into a comfort fest and a place to just talk about how crappy it feels to be me right now). So I went, and got home about 8 PM.

Sofie was all bathed and ready for bed thanks to Ashley, her fabulous babysitter who has been a wonderful addition to the extended family......I took over from there, and got into bed with Sofie for reading (she reads to me, then I read to her, then we have a sweet little bedtime routine where we sing about having "beautiful, colorful dreams". Then I rub her tummy until she is snoring and I sneak out).

The next day, I planned to work from home, because I had a visit planned with my GP, the fabulous Dr. Marum.....the gyne-onc folks manage the cancer, they seem to prefer passing along the other stuff (like the intense fatigue) to my primary provider.

I worked some at home, but was still really cold and short of breath, especially going up and down the stairs to my office. I did a few errands before the doctor visit in the afternoon, but did not get finished with the post office (the line got too long). This is relevant, you will see!

I walked about 20 feet from my car to her office and arrived short of breath. She took one look at me, and then looked at my hands. My nailbeds were purple/blue and my "pulse ox" (that weird thing they stick your finger into) was bad. She listened to my chest and then said "You need to get to the emergency room, right now". Being me, I said, "OK, but I just have to go back to the post office to mail the packages.....". She was emphatic, "get there now...and have a friend go with you". There was something in her tone, it got me out of there, I called Jamie and she called Tracey who met me at the house and off we went.

I got to the ER about 4-ish. I waited for a bit, then they did the usual vital signs and checking to triage me to see if I was about to keel over (I wasn't), and then we waited. And waited. And waited. Tracey had to go to do a massage, so Betty (yes, the same brave Betty who came to the 6 AM gallbladder surgery with me) was recruited.

Somewhere between Tracey leaving and Betty getting there, I was finally given a little room and a gurney to be on and then the parade of young earnest residents started to come in and do their thing. First I got another chest X-ray. I had just had one the previous Friday, but no, that would not do. Then more blood was drawn, and they started an IV. The first resident was a bit distracted and seemed a little flakey, but she disappeared at the shift change (about 7 I think) and a doctor that I knew from clinic showed up. Dr. Reddick is terrific and made me feel a lot more like something was happening. A cardiac test was done (in the room) and then they sent me for yet another CT scan, this time of my chest.

Then more waiting. By now, Betty had arrived and wisely had brought food from Whole Foods Cafe (which I think of as my home away from home food). I was actually starving, having not really eaten much that day at all, so we both chowed down. Who knew a pimento cheese sandwich (a Southern thing for my West Coast readers) could be so delicious?).

At some point, they came in with the news....I had pulmonary emboli. I remembered my mom had once had an embolism post surgery (a blood clot that kind of breaks loose and travels, in this case, to my lungs). But the keyword here was emboli. Not one. Not two. There were pretty much clots in all the lobes of my lungs. Eeeeeeew. So they began the long process of trying to find me a bed. Betty patiently waited. And waited. About 1 AM, I was brought to my room. My nurse introduced herself (Amanda) and they took vitals. Then Betty went home and they told me to try to get some sleep, since the first doctors would probably be in by 5:30. I placed a call to my Uncle Lew in Palo Alto, since I was too cowardly to call my mom directly. Lew was asked to explain what was going on (since he is the expert medical person in the family) and I then dozed off, for a few short hours, with oxygen on and sitting kind of at a 90 degree angle in the bed. For a few short hours, til the anticipated arrival of the doctors at dawn.

And yes, yes they came. I was sound asleep, and the light went on and it was "showtime". The gyne oncology fellow (who I know) was in briefly, then the vitals happened and all that stuff (they were even having me save my pee, for goodness sakes). Peeing was not a problem, but they are obsessed with measuring things in hospitals.

Shortly after, she returned with her little flock of residents (they are all looking like teenagers to me as I get older). They "presented" me and then discussed the new medication I was going to be on (blood thinners, injectable twice a day). And she implied they might send me home that day.

I totally had a panic attack. I was not ready to go home, still short of breath, and I had this idea I would be found by Sofie, dead in my bed. So I asked for a social work consult and got her to be my advocate for not sending me home right away. Shoot, I was still on the oxygen to breathe! And I had to be seen by the cardiology team as well. So I was for sure not ready to go.

As it turned out, I ended up staying a total of three nights, leaving on Friday. The take home message was not to over-do anymore. I really could have died if I had not gotten assistance when I did. I will forever be indebted to Dr. Marum for getting me into the ER when she did.

I am a pro at the injections, having done that sort of thing before. The clots will take as long as two months to "re-absorb" into my body. And I am dealing with the guilt of not going to work, but knowing that I really cannot. I am still short of breath a bit if I over-do stuff. And I get tired after about four hours of being awake even if I am not doing much.

So the weird thing here is that although I am getting much better at receiving (gifts of food, prayer, energy and love) from friends and family, it is still very hard for me to find myself in this position of neediness.

Friends on the West Coast (you know who you are) are evidently emailing like crazy and planning a fundraiser to help with all the out of pocket costs plus all the non covered costs like supplements, acupuncture, etc. And the endless need for childcare, since some nights, I really cannot get her home, bathed and everything, since I am just too wiped out.

The next treatment is tomorrow, Laurie Hauer, whom I have know for about 25 years, but not seen much for a long time since she moved to Santa Cruz, arrived on Saturday with her lovely teenaged daughter Maya. I still remember Maya being a two year old, and the last time I saw her she was about ten or eleven. So it was a shock to see her tall, lean and just full of self confidence, a senior on her way to college in the fall. Sofie has fallen all over her and is loving the extra attention being lavished on her. Maya will stay until Wednesday, then fly home, Laurie is here until Saturday, for the express purpose of taking care of me as I am not supposed to do anything with heat, friction or the potential of same, for at least seven days post treatment.

Tomorrow, I will have treatment number two. Coincidentally, Jamie is having her fifth treatment the same day. Jamie has been right here, with us, with Sofie, all the past few weeks. But this week, she needs time to recover from her treatment, which includes a drug for her white count that makes her feel like she has flu for about three days. So Laurie is here, taking care of me, of Sofie, so that Jamie can rest and feel nurtured too.

Life these days is just so different. I keep thinking, who am I now? I am not working (I plan to go back, but not until I feel like I can do 4-6 hours in a day without feeling totally exhausted). I am someone now who needs help with all sorts of odd things, like changing the catbox (too toxic for now), cooking the food, getting the laundry downstairs and then up again.

My house feels a little frayed around the edges, with too much clutter and not nearly enough energy to put it all away. All this time, lost to tiredness. I feel quite unproductive. I "should" be organizing a closet, sorting socks, filing and getting ready for taxes. And I will do some of that in the next two weeks, but at a snail pace, it seems.

The Debra who was able to multi-task has been temporarily sidelined. Benched. The person who claims to be me needs naps and hot tea, even though I still crave coffee. But it doesn't agree with me right now, not really. So hot tea it is.

Poor Sofie. I know she is taking a lot of this in, the comings and goings of the guests, the tired mom syndrome (last Friday, she had a little fall at school and when her teacher asked which Mom to call, she told her to call Jamie because "Mama Debra is too tired". I feel like she is slipping away from me sometimes, but then when we cuddle , I know she still loves me and wants me to feel better. I am being as creative as possible with play dates, getting them set up for each weekend, so that she has fun activities to do while I rest or just hang out. But I know she misses the mom that used to live here. The one who did stuff with her. I miss her too. But hopefully this is for the short haul and I will get much better and be able to make more memories with her. Both Jamie and I have decided that this is a priority. To create Mom memories so that if my time is cut short, she will remember me and remember fun, family times together. We are very much that, a family. And for that, I am very grateful.