Tuesday, April 20, 2010

Back in the Hospital Tonight

http://www.caringbridge.org/visit/sylviaduryee/journal

Saturday, April 17, 2010

Went Riding Today!!!





Mom kicked me out this afternooon, as her Two Marilyns were there, and I actually got to ride my old friend Tjeerd for several hours!!! Oh what a celebration to see that horse again; it has been 4 years. We had to sell him in 2006, and what a joy to see him doing so well. I had forgotten what a darling he is on the trails. Fun fun rangy big trail walk!

Mom is asleep now, I should go to bed too, as I stay up late habitually, and her 7 am breakfast comes awfully early (do not goof off in your MMO Corrie! Go to bed!).

She told me tonight that it was very strange to her that her mother died of breast cancer at 80, and now she and Aunt Jocey both have cancers at nearly-85 and 87 (they will turn those ages in August). Her cancer seems way more scary than Jocey's, though Jocey's is, at the present time, more uncomfortable. She spoke of a 91-year-old friend and said that she certainly would not make it that long, and I said "well, you never know" . . . lamely. Sigh.

I should be able to sleep tonight after all the great exercise. Hope so, I am still re-learning sleep patterns after all that constant startling at the hospital.

I need to get back to the gym. For many reasons:)

There should be some news here soon in the world of Kairos Productions *tantalize, tantalize* but I can't say anything yet *giggle*.

Thursday, April 15, 2010

Wednesday, April 14, 2010

Mom's New Blog, Caringbridge

Those who love and support my Mom, her new Caringbridge site, that I will be building, is:

http://www.caringbridge.org/visit/sylviaduryee/journal
Sorry for the very public broadcast of our family health stuff, it is a little tacky, I realize in retrospect, but I have many real friends who read this blog, not just aquaintances. If you are an aquaintance and not a friend please forgive me, and chalk the over-sharing up to sleep deprivation.

Sleeping day! Thank you for all your good wishes sent through this odd blog phenomenon. Again, sorry for the overshare, I know many folks go through the sort of 8 days we just had. Some of them have blogs that I also follow :)

We will be setting up a Cancer Care blog just for Mom so this one can get back to its regularly scheduled Film News. Please email me if you wish to be on that list.

We are Going Home

They are releasing us from Hell Ward; Mom and I are on our way home with Terry's and Rob's help. The large, loud rednecks did not stop hacking up goop, laughing and smoking (outside and coming in reeking) and shouting, all day. There were no naps at all on our side of the curtain.

Tests have come back saying she has Stage 4 cancer, an adenocarcinoma.

That is all we can say at this point except that is it not lung cancer and it is not breast. More tests obviously forthcoming.

She will be seeing the pulmonologist tomorrow, outpatient, to have a shunt put in to drain the pleural effusion on her own so she can breathe.

We are both so tired we are hallucinating, we would love to answer all your kind and loving questions as soon as we know more, but not today.

Sleeping day!

Tuesday, April 13, 2010

New Digs

They moved us to another hospital in the Swedish system, onto a spare and businesslike surgical ward, into a shared room with no potential for a cot. We are not amused. The neighbor in the next bed, while very nice, has loud guests behind the thin curtain.

Mom is trying to sleep and can't.

We were so spoiled in that private room all week at Cherry Hill :(

When I asked if I could have a cot, they said, basically, it was about the patient, not about me.

Um.

I want to stay to be here FOR the patient, you un-compassionate poops. For comfort and company and a thousand little things that you do not get to.

I am concerned that if she gets nervous at night she will have to deal with her somewhat iffy roommate.

So it goes.

Praying that she will be comforted and fine and get some sleep.

Trying not to whine, for her sake, but to be upbeat.

AH! They found me a foldout chair, not great but better than nothing. Staying.

Tomorrow we find out more.

Mom and Me on Easter Sunday a Week Ago

After One More Night, Many More

So. Her O2 went down to 89 last night on 4 liters of Oxygen, around midnight. And yes after Terry gave me a nap yesterday afternoon, I did sleep here again; good thing too. I was able to help last night and today. The nurses, while excellent, are also sometimes annoying and forgetful. I can shield her from some of that.

We just heard from kind and compassionate Doctor Petersen (Cardiologist), speaking for Doctor Charlie Lee the Pulmonologist, that they found what could be cancer cells in the fluid they took out of her Friday. Which would mean lung cancer.

The pleural effusion is back, which is why she can't breathe again; it is around her right lung once more, the xray said yesterday. and it is once again huge.

They are going to move her to the Swedish First Hill campus today, off Madison, which is the Pulmonology ward, as we have been on the Cardiac ward for a week now. So far, with a few glitches, her heart is fine. Over to you, Doctor Lee.

They say it could be another week before Mom gets home. She is very upset by this of course. She said "I miss my cat!"

And then some.

She has fallen asleep now with her hand over her forehead. My heart breaks looking at her.

I am very far beyond rested sleep, but not quite hallucinating yet. Last night I slept from 12:30am to 5am when they woke us, then a little bit between the 6 and 7 am wakeups. In that last little nap I had what I hoped was not a prescient dream. Turns out it may have been.

I dreamed that Mom and Dad and I were on "P.S." (the boat that Dad built in 1970), sitting in the water off of Indian Point, at anchor near another boat.

I was on the boat's back deck, and suddenly it was weirdly awash, with water to my knees, though there was none inside the boat itself. I called forward to Dad in the Pilot House, and told him. He said he could handle it, and he leaned the boat to the side as easily as if it were a light sailboat, to spill the water out. But more water came in through the gunwales, and it sunk a bit deeper. I reached inside the boat to get Mom's ring just in case (her engagement ring that they tried to give me last Wednesday when she was admitted, but it was so big it fell off my thumb and I put it back on her). Dad tried to lean the boat the other way to spill the water, and it took on even more. Now all but the main house was sunk. Mom and Dad and I began to swim. In one last attempt I tried to stand it on end, by pushing on its back, but alas that sent it to the bottom. It was only about 20 feet of water, I could see it down on the bottom. I called for my folks, but could not see them. I tread water, frantic. Then Dad came swimming up trailing about 6 scavenged net floats on lines held in his mouth, to tie to the Crow's Nest and mark the place.

Mom was nowhere to be found. And the other people in their boat just watched and did nothing.

Sunday, April 11, 2010

One More Night . . .

. . . at least one, maybe more. They keep saying that Mom can "go home tomorrow" and getting her hopes all up, and then she has very little wind, pain on deep breathing, her heart is beating too fast, and she is dizzy and wan, so they keep her another night. I am not a fan of that daily hope-dashing. I think it would be better to say "it will be a few days".

I got sprung today; for the first time since Thursday morning I left the hospital. Pam came to stay from 2pm to 7pm, and I got a lovely 3 hour nap (with Smee curled up on me), shower, and a brief hello to the fam (Theo is really ticked at me, what a surprise - but at least he showed me his latest animated films!). What a difference. I amr eally ready to face the night.

Two darling friends have offered to spend the night for me (!), and it totally blows me away that folks would offer that. But I feel better being here, at least for now.

We are looking into home health care; in the morning there is a lot to arrange. A hospital bed among them. I do not want her hiking up the stairs, and neither do Rob or Cathy:)

Mom is dear and utterly brave in the face of all this. I am exploring new depths of fondness and love for this amazing lady who raised me, put up with my quirks and difficult personality traits, taught me to love this precious natural world, and is my wonderful adult friend. I am relieved when she gets occasionally feisty at caregivers. It makes me feel like she is coming back to strength.

I am also loving her exposing me to more PBS. She really loves that station and I do too, but it is all she wants to watch in here.

My most favorite thing though is her fondness for funny little stories and reminiscences that come up. She talked about her brothers a lot today. Fascinating.

Grateful to be with her, and not knowing how to do do this caregiving along with family and work, and trusting that if other friends can figure it out, so can I.

Saturday, April 10, 2010

One more night...

They can't let her go yet because her BP is so low. An xray later today will tell us more about the remaining fluid. Doctor Lee cheerfully raised the spectre of a tumor, bless his little pulmonologist heart. We won't know till Tuesday when the labs are back. He also said he often has to do multiple thorocentesis procedures sometimes if the lab results are not definitive. Oh goody.

Mom is being heroic: sweet and compliant and grateful with only an occasional flare of eye-twinkling rebellion ("yes I can too eat chocolate! They don't mention it on that dumb heart diet!")

We are both exhausted. Being woken up whenever you finally achieve a dreamstate is ... Special. I don't know what to do about the fact that she is insisting I go home this evening. There are so many little helpful things I can do if I am present, and three or four times I have been able to know her medication story when others have been unsure. I think I might need to stay, am not deciding till nightfall. And yes, before I get emails, I DO know my health is also important;)

I find myself getting very angry when people use euphemisms like "End of Life Issues". I remember Madeleine hated the euphemism "Passed Away". She would strongly correct folks and say, "No, Hugh DIED."

We both know that this will very likely be Mom's final illness, we are just fighting for more years, hopefully multiple. She was philosophical when the nice chaplain visited, saying "There are way too many people, the planet is overpopulated and getting worse."

Well, sure, but this is HER, my sweet Mommie. Not a statistic. And yes, she is 84; fair enough.

It still sucks.

Friday, April 9, 2010

Mom is a Bit Better, PHEW!

Medical update for those who are sending Mom love:

This early morning she could hardly breathe at all, and there were some very scary coughing moments between 6:30 and 9, so much so that her wonderful nurse John called Doctor Petersen, who (unlike some docs) called RIGHT back and said yes, give her a dose of IV Lasix, wait a half-hour, and then do the procedure NOW, not this afternoon. So they did it around 10:30, and it was satisfying to see the awesome Doctor Li, the Pulmonologist, take 2.5 liters of claret-colored fluid out of her chest cavity. Right there in her hospital room.

She is breathing SOO much better. Her voice is stronger, with far less panting.

She is dry-mouthed now, with very low blood pressure (92/60, it was 70/60 an hour ago - heart rate 94, oxygen is only 90-91 though which I know from Tallis' Children's Hospital days is not great). She is in a lot of pain; in her chest cavity where her right lung is slowly reinflating, and where they stuck her. They are giving her some pain meds.

The diuretics have made her blood thinner, as they were trying to get the fluid out of her chest cavity, but also took it out of her circulatory system. So she is wan and dizzy.

We don't know when she can go home; Doctor Petersen says it will be when she can hike the hallways without being short of breath. Could be as early as tomorrow but I seriously doubt it.

So we are hunkering down for another night here. I am trying to return business calls but it is hard to do a lot of that, as she is wanting me here; she likes it when I read to her. I am pretty much offline for the duration.

I am utterly grateful for the doctors and nurses of Swedish Hospital. And for the amazing procedure, the Thorocentesis, which I believe saved her life today, in my laywoman's mind. SIGH OF RELIEF!!!

Thursday, April 8, 2010

Found a Cot Hooray!

Now we are staying up late reading, because Mom weirdly is not sleepy. She is reminiscing about the time my brother showed up for a boat trip with very long hair, shocking my Dad, who never even said a word *grin*. It is good to be here.

Read Evening Prayer thanks to Pam sending it to me. Tomorrow I will get Terry to bring my BCP.

Good night.

Whatever Gets You Through the Night, It's Allright . . .

So here we are still at Swedish. Mom is getting a little bit worse all the time because they were unable to do the Thorocentesis (aspirating out the fluid in her chest cavity that has collapsed her right lung) today, because contrary to Doctor Petersen's wise orders NOT to give Mom Coumadin last night, some dork did, since it was on her list of daily meds. She is furious about that because she can hardly breathe at all. And she is scared every time she coughs, I can see it. The coughs are dry now and unproductive.

If they can get her blood Coumadin level down lower than 1.5 tomorrow they can do the procedure. It is at 1.9 now.

So I am trying to spend the night here, because I want to be here if things get worse. That is dependent on whether or not a cot can be found, as they are in limited supply.

I am flared up with fibro, of course, and coping. I have my work face on, I am not showing any unhelpful emotions in Mom's room, just I was on JourneyQuest. Had a dinner break a little while ago and called Terry and Tallis for a little cry, now I have my armor back on. We have had wonderful visitors and phone calls (and an online meeting!) today, including Peter, Mom's fave minister, who prayed with us. Mom gets overwhelmed when it is more than one person visiting, though. Too much energy.

I am trying to just be in the moment and trust that it will turn out allright. And clinging to "All Shall Be Well" a lot.

I feel like I was just beginning to process the whole JourneyQuest roller coaster when this began; like I went from one intensity to the next. I would love a pause or a wee rest. Which is why I will go online again some tonight, to forget my troubles in playing my MMO. Tried reading but the light is too dim. And by the way, this is SO not about my very slight discomfort . . .

God bless all who are in pain and scared, as I know many are this night.

And thanks for reading this dear ones; I realize the blog posts are coming fast and furious these days. I tend both to over-eat and to over-write when I get stressed :)

I remain in faith, and in gratitude for the angels in our lives, human and otherwise.

Wednesday, April 7, 2010

In the hospital with Mom

Mom's awesome cardiologist, whom we both hope will become her very own cardiologist, looked at her Echocardiogram and her chest xray and her blood work and said that they might need to physically get rid of her big pleural effusion (the big sac of fluid pushing on her lungs from her chest cavity) tomorrow, but they have to get her off Coumadin first, so she didn't take it today and won't tomorrow and they will aspirate the liquid out tomorrow if the fates align. They are trying to get her very fast heart rate down also. And giving her IV Lasix. Fingers crossed.

We are both so very relieved that she is here at Swedish where she is finally getting such excellent care.

She is panting in her bed now but is much better than earlier today. At last she is letting us help her the way we want to:)

She is being sweet and polite and brave to all nurses, doctors, visitors, and me. Sweet lovely brave scared Mom. I love her more than I can ever say.

Mom and I are headed to the hospital

She is way worse, they just did an EKG and put her on oxygen and have agreed with me that things are dire just now, (she can't walk more than 10 feet with out panting for her life) and that she needs a suite at "Hotel Swedish" as Doctor Frank so genially put it. He just gave her some nitroglycerin. More later as I know more.

Sunday, April 4, 2010

JourneyQuest Sneak Peek at Norwescon Went GREAT!



The crowd seemed to really enjoy both trailers, the one for JQ and the "Making Of" trailer that Terry made.

YAY!

Our first public outing was a hit.

And now to bed, tomorrow is Easter!

God bless us, every one.

Saturday, April 3, 2010

Better today!

Mom is a bit better, though her breathing is still not easy at all, and she is frustrated at her lack of energy these last three weeks - I am cautiously relieved. I am at work today on Charity Parenzini's film "You're Still So Vain". Then to Mom's for late lunch. Then will be presenting JQ footage tonight at NorWesCon. Will hopefully go over to tuck Mom in later.

Wishing everyone a blessed Easter Day tomorrow.

Friday, April 2, 2010

Mom Continues to Have Shortness of Breath


They didn't do an EKG on Mom at the doctor's today, as he was out of town; they just told her to stay on the new drugs, the Lasix and the Losartan, in addition to the Coumadin and the other things. Argh. I am hoping we don't have to go to the ER for an EKG over Easter weekend! She is having a hard time with the panting, and trying to catch her breath with just walking. It calms down when she sits though, after a bit.

Once again I went over there to spend time with her this evening, and once again I helped her get ready for bed and tucked her in and stayed with her till her breathing got better after tackling the stairs. It was very sweet and companionable. I brought her a new pillow, the denim one with arms that Terry got for me when I was so sick. She liked it.

At one point I lay my head against her shoulder on the pillow and we chatted about various memories of boat trips and hiking trips. We watched her neighbor in his room as I guess she does every night. Looking at the photos and things around her bedroom, she said "What are you going to do with all these rocks?" I said "I love these rocks." She said "You didn't answer me." I picked up a picture of the two of us when I was three, rowing in the dinghy at Indian Point, and said that it looked like my whole childhood. She agreed.

I don't want to answer her when she talks about dying; about not being here and asking me what I am going to do with the house, etc. She is thinking this is it, that she won't get better from this, and I guess I am hoping very hard that she is wrong.

She has lost a great deal of weight, she is 130+ instead of her usual 143. They say it is losing the water weight, but I worry. Vomiting does not help. She said the nurse said she will get her appetite back soon. I sure hope so. She looks strong but I don't want her to lose more.

My brother called her today and it pleased her very much. Rob had to yell at him for three days to get him to call her yesterday, but I gather today he called on his own. I hope he actually comes to town in two weeks.

God bless us, every one, on Good Friday. May Easter bring all who suffer healing grace.