December 31st, 2012
This year saw many events take place. All of them, overshadowed by my mother's cancer. Next month, I will revisit 2012 to talk about some of the other aspects of 2012, but on the last day of the year, the only meaningful topic seems to be ... this. These notes are taken from emails and diaries for my Canadian family and friends... they are personal and largely unedited.... and occasionally, graphic. I am posting this as a log in hope that those of you interested in our family, or in the topic, will be touched.
Notes: Prague, July 19, 2012Friday afternoon, now after the surgery: There is soft angel music (courtesy of friend angel Maruska) playing on the Mac. Mom seems very much at peace as long as she is not moving, as there are large wounds and it hurts. She just received more pain meds so that should get better too. Evening- she was hungry and ate dinner, great news! She especially enjoyed the fresh strawberries i bought earlier.... we watched an absurd Serbian comedy on TV, said good night.
In early June this year, my mom was diagnosed with breast cancer that has been quite neglected and growing for some time.
Mom didn't want surgery, but it was a pretty aggressive cancer and without it she would have had just a few very painful months, on morphine till the end. I found myself unable to accept such an end for her, and to let her go. While fully acknowledging the double standard at play here (because i THINK i would prefer a quick exit for myself), i was at first the engine behind trying to convince her to go along with the surgery. My mother has Alzheimers. It made the decision-making process much harder... am I or am I not supposed to act as her brain in this? As her one and only family,and living across the ocean, i was on my own trying to figure this out.
The fact that i had a huge, long-planned concert in Prague, Songs for the Breathing Walls at the Jeruzalemska Synbagogue, on June 20th, just as these events were unfolding, forced me to juggle the daughter/artist roles on per minute basis... usually daughter won, so i felt badly unprepared for the concert. My throat was so tight, i couldn't sing at all up to about two days prior to the concert, and even then i broke into tears every time i opened my mouth, singing the profound words of the biblical texts...
As my mother made it more and more clear that she didn't want the surgery, I was really trying to understand her, and understand my own motives for fighting her on this. I realized I was being selfish. I was the one with the problem...she was at peace. i talked to a psychologist and social workers... and finally decided, with tears but finding inner peace about it, i must go along with her wish and let her die if she wants. Then an epiphany: I must let her go - the same way she let me go when i wanted to leave the country when i was still a teenager.... it must have been so hard for her- i was her only child, and she DID let me go, staying behind all alone. So it is time to return the favour, repay the debt.... right?
Then we had days of back and forth, on her part.....i was eventually so exhausted from all the mental but mainly emotional effort of trying to do what she wants, of what is best for her, rather than what is best for me...it took all my strength. Deciding somebody's life and death.... when they don't know what they want as Alzheimer's makes them forget the decision they so painfully arrived at earlier... ....it is a huge responsibility. Finally, it seemed very clear that no, there will not be a surgery. July 15, my mother, myself and Maruska - my angel helper - come to the hospital, ready to cancel the surgery. As i am starting to explain to all these doctors why there will not be a surgery despite their advice, my mother says "But didn't you say that that's the only way to live on? Of course I want the surgery!" So... we booked the surgery and this time, I was not going to allow any back and forth. This is what it will be.
the day before checking us into the hospital, i had to get her prepared, her luggage, arrange medications with the nurses at her home but she again was back and forth. But this time I decided to STICK TO IT , which was the advice of the psychologist....make a decision and stand by it....Because she was again not sure, i decided it was right for ME to make the call - and go for the surgery- as i DO believe that it will save her life. She was arguing a bit, but then i said i will stay with her the whole time in the hospital, and we will watch movies and read books together, and she was so CUTE! she said if that is the case- she will forever want to stay in the hospital! so.... we will have a private room with two beds, and i will stay there 24/7 until she leaves. it could be a week....i will bring the laptop, books, rent movies.....it will be amazing. I hope. please pray that the surgery goes well. we are booking into the hospital tomorrow, thursday morning at 7:30am, surgery is on friday. when i allow myself i am REALLY scared. there is big risk of course. but- i am not allowing to think that way. i have faith that it will be fine.
Diary for Thursday-Friday-Saturday, JULY 20-22, 2012:
Thursday, the day of checking in to Vojenska nemocnice (Military hospital):
I was up at 5:45 am...at mom's residence at 7, cab to hospital.... bunch of preparations for the surgery, chilling together, explaining over and over why we are in the hospital.... and having some real good close time. Maruska, mom's close friend, a former nurse who worked in this hospital at a time (and currently a psychic healer and a tremendous help/replacement for me when i am not around), was with us at first, and smoothed all the arrangements. I am sure it made a nice difference...Once all the medical stuff was done, and things calmed down, Thursday afternoon, mom and i were alone again, lying on her bed, and watched 4 parts of a made for TV, 9-part movie on my Mac - both huddled together and enjoying the experience. we have a very nice double room at the hospital, luxurious in fact- nice bathroom, fridge, big window that opens (Europe!), breezy and bright, painted green....It was crucial that i was with mom also through the night, mom was wondering why she didn't recognize anything here, i kept reassuring her. i will be here as long as necessary, probably 4-5 days.
Friday, we were awakened at 5:30 am, all sorts of prep for the surgery. Finally, the hospital's top breast cancer surgeon (female and young, as many here are) came to see mom and concluded that to remove only the tumour makes no sense, as the tumour is huge, aggressive and too spread throughout the breast and right through the muscle below. so it turns out that removing just the tumour was never really an option.... if the choice were to be the surgery, it needed to be the whole breast removal or none at all. so that was a bit of a shock, to make such a huge decision on the spot, but mom agreed to it, saying well if you think this is necessary.... so that's what happened. two hour surgery, they took the whole breast plus lymph nodes under left arm as some were also affected. it will be a major recovery process as this is an extensive surgery....but now there is real HOPE!
Then it got a bit scary for me (yes i am still sleeping in the same room with her....that's crucial) - when she forgot she was hooked up to several drainage needles etc., and wanted to go to the bathroom, and nearly fell, and i didnt know what to do. But we made it....and even got some sleep i think.
Mom was able to sit at a table and eat breakfast....then back to bed. All in all, her body seems to have accepted the anesthesia and all that, despite all the concerns. mom talks, laughs, sings with me for hours in harmonies....strangely enough, she remembers MORE of the Czech folk songs than she did just a week ago when we had a singing session at her residence. I did some experiments... last week she claimed she never heard "Tece voda, tece" before, even though she taught that to me when i was little...and yesterday, she sang THREE verses of that song!!!! Did the shock to her system actually unblock some of the lost passages in her brain...? i wonder f that is possible...
She smiles at me whenever she is awake. I can really feel the power of love here... she would not want to go through this for herself but she is keen to be with me and make me happy, so she is trying hard to live up to this challenge. I feel my love for her so intensely that it makes my eyes water whenever i look at her. She is semi-sleeping but when i look at her, she feels my gaze and always opens her eyes and smiles.
Right now, it has been 24 hours since surgery, mom is resting, in our big nice room. The large double windows are open, fresh air making it feel so breezy here. I just hope all keeps going as well as it has so far, needless to say- it is risky to do a surgery at this age, and there could still be complications, but hopefully it will keep going in this direction until we are "out of the woods".
Wednesday, July 26, 2012
today, my mom and I left the hospital after nearly a week...and i brought her back to her residence. But it was not a smooth ride...she didn't look that great in the morning. Complaining of pain constantly. I asked for stronger medications, which really helped ("opiate" they called it), but made her look clearly spaced out and numb...But the doctors thought that feeling pain was not unusual, and took out the last drainage tube, and i decided that maybe she would now feel better in pleasant, familiar surroundings, so i didn't try to convince them that they should keep her another day. . .But the trip was really hard on her, travelling through bumpy Prague for an hour, I was really nervous....at some points she looked like she might faint. Well somehow we made it to Hagibor! That, despite the fact that it was a record-breaking heat near 40 degrees Celsius, and the cab driver said it was too hot! to turn on the AC... the AC could not handle such heat! I was too worn out to argue with him, but of course I should have had.... But here we are, back... she spent the rest of the day in bed, and actually having some fun... with various friends from here coming to visit, so happy she came back... (yes there was a lot of concern). And she has now been reading for two hours, rather than watching TV, which is a good sign. Her head is clear, she is teasing me...
They brought me a big chair that unfolds to a bed to stay overnight, i think it is still important to be with her. She is so happy to have me near.
Today was the first time i made myself really look at her body, the scars.... they are HUGE....one large right across her chest at least a foot long! and the others where the breast was plus under the left arm.... considering how big this surgery was just 5 days ago, she is doing amazing. For any age!!! Also, today, i finally asked all the right questions from the lady surgeon that operated on her, to explain to me what exactly they found in the surgery.... turns out the tumour was through the whole breast and deep through the muscles just short of her rib cage. Apparently- this was the last call. Had been left untreated another week or two, it would have grown through her ribs further inside, and it would have been inoperable. All this made me super happy about the decision to push for surgery. That sort of cancer would have killed her not only very quickly but also very painfully, as it was already getting to be clearly quite painful for her, and she would have had to spend some months till the end completely sedated on morphine.... thank GOD i trusted my gut on this. No matter what happens, really, we chose hope; the end the other way would have been too horrible, too painful. I am looking at mom still reading in her bed, reading a travel book about Cats; she looks so great, intelligent, focused, content. I feel very happy, at peace with all that happened, and SO thankful. NO matter what happens next. This is priceless.
Update July 31st, 2012
My last mom update was almost a week ago, Wednesday, july 26. Today is Tuesday, July 31st. A huge amount has happened since...
First of all, i spoke too soon, counted the chickens before they were hatched (etc....). i jinxed mom's progress by my cockiness, claiming it was all worth it, in my last update. Patting myself on the shoulder for pushing for the surgery. I am an idiot. I didn't know that .... a good surgery is only a half of the battle. Post-surgery care and recovery is the other. Everything can get easily lost if not done right. Well either i jinxed it, or we were let go from the hospital a few days too soon: on thursday, the morning after my flowery update, all went bad. I came to mom's bed to help her get up and take her to the bathroom. As she got up, a stream of blood from her underarm, on both of us, the bed, the floor. A strange sensation - my mother's blood on me.... surreal really. The third, smallest wound opened, not healed at all. At her residence, they are not equipped to deal with this sort of medical emergency. Even though there is a good and big hospital almost across the street, an ambulance (driven two fast by two assholes flirting and yelling at girls along the way) had to take us all across the city to the hospital where they performed the surgery, which was a painful nightmare as mom cried with each cobble stone bump up and down. Well - it turns out that summer is a bad time to be needing hospitals. Half the staff are off, one of two surgery departments is closed, and the rest is undergoing renovations. So her treatment Thursday morning was absurd, nobody had the tools or anyhing they needed, as it was always someplace else in one of the off-bound departments. I think this really further screwed up mom's situation. Imagine a doctor holding the wound open but not having the right stuff to treat it with- for 15 minutes while his nurse is running around the hospital. But finally, they cleared out the wound, drained, did a bunch of things...and then we went right back to the room we left the day before....But it turned out to be a really scary day, as were the next three. Her blood pressure kept dropping, and the wound kept bleeding. Thursday night was crazy, in pain throughout.... Friday morning her blood pressure dropped to something like 65/50 and i think it was touch and go even if the doctors didn't admit it. They started paying more attention. Mom got too transfusions and the doctors started running. Saturday she looked better but the wound was still really awful and finally the doctors said it is infected. On Sunday, they took mom for another surgery, this time to open it up, clean out all the infected scar tissue, and sow it back together.... That day, mom ended up at the ICU, Intensive Care Unit, thanks god. it was a dreadful experience, we were there for two days straight with me on a chair next to her bed (against the rules, nobody is supposed to sleep there overnight but they let me) but that saved her, as she was hooked up to oxygen mask and all the machines that measure everything and they could watch her blood pressure and all much more precisely, in fact every ten minutes. My personal low point was when there was a lady dying in that same room by not being able to breath somehow and she was gasping for air so loud and making terrifying sounds and all the doctors were busy; right at that moment mom's blood pressure hit 202 and i freaked out as her machine started sounding the alarm like it always did in Grey's Anatomy; however, nobody came. i went to get them but they were busy saving this lady next to us. i felt terribly helpless and had about 30 seconds of utter despair. Got up then and put my hand on her forehead and held her and....strangely enough, the number went down to 190...well they kept her hooked up like this for 2 days, two very very long days.
Today, we are back at the regular surgical department, in "our" room.... mom's still complaining a lot about everything, because she forgets all explanations, but in general, i see huge improvement. it is as good as it was last wednesday, almost. Basically, the hospital , by pushing us out maybe two days early, has added at least a week to her recovery, a week of pain and at least a week of needing to watch her 24/7. This room is a palace compared to the ICU, and i do get to lie down (on a stretcher ! the kind they put patients on when rolling them to surgery! or to a morgue...kind of funny! or morbid? i lost my objectivity on that... there's no room for a real bed here, even if they had one which they don't). but i am thankful i get to be here at all, and to be able to lie down, even though i get never more sleep than a couple hours. something is going on all the time, nurse bringing pills, since Thursday also IV antibiotics every 6 hours, and measuring this and that, or mom needs to go to the bathroom (on average once an hour because of all the IV liquids...) . and then, we get a wake up at 5:30am when everything starts here. Early birds indeed! Doctors visit at 7am. the 5:30 is tough to say the least, as that is usually close to the time i finally manage to fall asleep from complete exhaustion. Other than feeling crazily in pain with every joint in my body after the night at the ICU chair, i am actually OK in general, just really tired, though i obviously miss a few things such as some veg food other than breads and rolls, and exercise, oh my, what would i give for an hour in a gym right now. The stress level Thursday through Sunday was also hard to bear but that has improved since, as whatever they did on Sunday seems to have worked.
So - thats where we are at. Not sure how many more days in the hospital, maybe two or three, or even four. i do worry that i would last that long as i feel some troubling signs creeping on me. I do suspect i will return August 8th a total physical wreck. However, there is no other way - she needs company by her side at all times, as the hospital would not accommodate her Alzheimers; apparently they would send her to the psychiatric ward if she seemed confused. The nights are the hardest physically, and our angel Maruska has replaced me for one night to give me a break, however i don't feel right to throw that on her, so i let her replace me in the daytime here and there so i can run errands if i need to etc. other than that, i haven't done anything, no work obviously, or even kept with mails much, just don't seem to find the moment/head space for that.
December 31, 2012
Now, with the luxury of 5 months' hindsight... I can say that yes, it seems to have been the right decision, to have a surgery. Mom has been able to enjoy her life since then. But the price was steep: We spent FIVE endless weeks in the hospital in the end... myself sleeping on the stretcher pulled out every night, sometimes with towels for blankets. My own body still hasn't recovered from this, and the lack of exercise. But my mom seems back to normal, sweet and wonderful every day on the phone. Her wounds , ultimately 3 surgeries later, have not quite heeled yet, because she seems to have developed some allergies and doesn't do the right things... Maruska the Angel is trying to help through alternative medicine, but so far, we are struggling. i have spent most of August in Prague in the end, and visited again in Early December. I cannot get enough of my mother and treasure every conversation and every moment with her as a precious gift, a bonus paid for dearly, but something that nearly did not happen.