Wednesday, November 30, 2011
University of Washington Libraries - specify Special Collections, Rare Books
when you fill in amount, there is a fill in box that you can specify Henry Kaplan Research Fund
Monday, November 28, 2011
Sunday, November 27, 2011
Friday, November 25, 2011
Wednesday, November 23, 2011
Tuesday, November 22, 2011
If you have digital photos, please send them to:
If you have hard copy photos, please send them to:
712 16th Ave E, Seattle, 98112.
Label everything so photos can be returned to you. If you have questions or need technical help, you may call Tom at (206) 406-4715.
I'll use this blog to close out this final chapter, now that I am an unemployed cabana boy. So stay tuned for announcements and info. Again, my thanks to all for your support.
Monday, November 21, 2011
Meagan continues to sleep peacefully. Miriam said she was active at various times, not awake but moving her arms and legs and murmuring. She has her preferences and expresses them - she does not want to lay on her right side.
I was able to sleep for about six hours. I feel amazingly more human-like this morning. An aide, Linda, will be here to help me today.
Sunday, November 20, 2011
We aren't sure whether her sleeping today is a reaction to the stress of yesterday or the transition to a new phase. She's had no food or water and I don't expect her to have any more. So it may be this is the final stage. But she is peaceful and comfortable and surrounded by her loved ones.
I've learned a couple things. One, she will not tolerate the alternate delivery route. I need to find meds that can be delivered via IV or orally dissolved. She is still surprisingly strong and resistant. So secondarily, I need to have a helper 24x7. I'm strong, but I cannot maneuver her on her bed alone nor take care of keeping her clean. Any resistance is not futile, it works. At least against one person. She also has pain when moved so it needs to be a team effort. Thirdly, we need to change her anti-seizure meds. She went without last night and this morning. Trying to make that happen on a Sunday will be a challenge. But hospice is working on it.
So, here's plan. I'm letting her sleep some before giving her the easy meds (delivered through a gel rubbed into skin). I'll give her anti-nausea meds through her port. If there is pain, I'll add morphine. If she's agitated, I'll add Haldol, which worked last night when crushed and mixed with a little water. They are going to get me more of these either delivered or to be picked up. When my aide gets here at 8am we will get her cleaned up. I'll then call the service and have them arrange someone here 8pm to 8am so I have coverage 22x7, giving us a couple hours in the evening of private time. Lastly we will get her on a substitute anti-seizure med, likely phenobarbital, which will also have some sedative properties helping her agitation.
A verrrry stressful evening. Hoping for a nap this morning.
Saturday, November 19, 2011
Which for me is now about managing her while she is in bed. Good news - no more lifting in and out of wheelchair and to and out of bed and toilet. Bad news - just like taking care of an infant again. Plus I still have the problem of getting her anti-seizure meds into her.
The bedroom now is strangely empty.
The hospice nurse gave the boys and me a very good overview of the dying process and what to expect. They each asked questions of her. The nurse has no idea how long it will take with Meagan, barring some major event like a stroke. It could be anywhere from 2-8 days - she is relatively young and healthy despite the cancer. It is hard to wake each day and realize that based on an assessment of her condition, she is likely to be around another 24 hours. Because she is there, but not there. And so as a coping mechanism, you necessarily adapt. As one of them said, 'Dad, I feel numb, just like you said". It's true - it's not that there is not love and care and depth of feeling for Meagan. It's that the Meagan we know is gone, except for the shell of a body and a small flicker of spirit. So what we are left with is a physical body to tend, without reciprocal acknowledgment or recognition or connection. It makes it a challenge, because you want to remember all the fantastic things - not the last days of delusional and disconnected sound and movement by a physical entity that is not what you associate with your mom or your wife.
I don't buy into the notion that there are great lessons to be learned by this slow dying process or that it is a gift in some way. We have said our goodbyes, we have our good memories and her life lessons emblazoned into our hearts and minds, and we can carry forward the legacy of her spirit (in a non-religious sense) and joi de vivre. I'd rather it end sooner than later so we have the energy and positive associations of her final days to go forward. I know we don't have a choice in the matter - but if I had a wish at this point that would be it.
Friday, November 18, 2011
Thanks to the visit by the hospice nurse and delivery of more medications I now feel able to better support Meagan on her final journey with medications to ease distress. In addition to a lotion which delivers three meds (sparing her having to swallow them), her anti-seizure and pain meds, I have on hand seven others as needed I know how to deliver and for what purpose. Hopefully these will keep her cough and anxiety at bay, pain and seizures away, and nausea and spasms (insert here word that means "reduced or minimized", that rhymes and completes the triad)
Candy or chocolate
Pastries (I know it is food but it deserves separate mention)
Flowers (out of vases, places)
Plants (hard enough keeping our existing ones going)
Knickknacks (Meagan is queen of them already)
We sincerely appreciate the gestures and well wishes. We don't need you to bring or send anything In lieu of the above, if you feel compelled, you could bring or send the following.
Good beer. Boutique stuff. The boys drink it, I do not drink alcohol.
I also realize that inside this sick body is an amazing woman - with plenty of internal fire and spirit still there. How she must hate having someone else to have to attend to her needs. This has always been a fiercely independent woman, who wanted to be able to handle everything herself.
But most importantly - it's at moments like this when I can really reflect on this woman and how much she means to me. Hospice is great, but in some ways it is like a machine which moves into your house. Because they are teaching you how to handle administration of medications and attend to her every need, it ends up feeling like you are a cog in the machine, and end up focused on the details of care. At least in the hospital the nurses and doctors handled everything - with my role in that arena limited to oversight and quality control. But it did free me up to just focus on her and our relationship.
It is only in the quiet moments now, without visitors or aides or visiting nurses and social workers that I can just look at her and recall what she is and was for me for 25 years. Yes, she looks a lot different. She's not there mentally and her physical condition is quite fragile. It is not a reciprocal relationship nor has it been one since her stroke. She won't be here much longer, and then all it will be are memories and images of her. But right now, in the quiet moment, she is in front of me, breathing softly, and I can see her and hold her and reflect on everything we have meant to each other. She is beautiful.
The hospice nurse is here today, with some substitute meds which should make it much easier and better for Meagan. Nothing they can do for the cough though. Plus the home care aide from Providence will be here to bathe her. They also shipped here yesterday a five medicine pack of end of life drugs if necessary (morphine, etc.), as well as Valium for her if she has seizures. I have a larger than expected pharmacy in the house.
I didn't see the Valium pack for me....
Thursday, November 17, 2011
Spent good time with our girl this afternoon. She is getting ready to make her transition. I asked her, "Have you been over there, seen it?" She said, "Yes, yes, I have." I said, "Is it beautiful?" She said, "Well. . . it's okay. It's not beautiful enough for me yet. So I'm waiting." I told her that when she arrived it would naturally become more beautiful, because she'd be there with her colors and sparkles. "You ARE going to bring your sparkles, right? You want it to be sparkly?" "Yes, yes, of course." I asked her what colors she was taking with her. Without hesitation, she said, "Magenta!" If that's not our Meagan, I don't know what is!
We sang "Over the Rainbow," one of her favorites, and then she broke out into something I really couldn't recognize. She was kind of "dancing," moving her head back/forth, moving her arms from side to side. I said, "Honey, I don't know that one. What is it, again?" She went through it again and it was I Got You Babe. "Sonny and Cher," she said. I asked her if she was Cher. She said "Yes, yes." Lots of smiles and sparkles in her eyes.
There were times, very often, when she is clearly communicating with people not in the room. I said, "Honey, are you talking to people I can't see?" She said, "Yes, I am." I said, "Well, who are they? I need to know who you're talking to." She said, "I don't know who they are. I don't know." Then I said, "Well, are they nice?" Her response, "Oh, YES, they are VERY nice."
So what do we know from this visit? 1: She's getting ready to make her move, but she's waiting for the contractors to make it more beautiful prior to her arrival. 2: She secretly wants to be Cher. 3: She is already meeting new friends.
All of these things are good. Very good. Although, I gotta tell ya, I've known her for 36 years and had NO IDEA about the Cher thing. . . :-)
She is smiling a lot - even when she is talking in her sleep. She still retains some charm and wit even though it is limited. And she definitely retains her "wife" characteristics. I have witnesses. I asked her if she needed to use the bathroom. She rolled her eyes at me. That got a big laugh.
She is pretty delusional and even with her eyes open does not appear to be viewing the same things we see. It's disconcerting and rough on the boys. Last night I had no med delivery duties between 10pm and 6am. So I had a block of time in which I could have slept, in theory. However she was quite vocal and active, so it's hard not react and as a result I didn't get much sleep.
It is entirely surreal to sit and wait for your wife to die. Equally so to watch your mom die. She is already pretty far gone, and there were times I was convinced she wouldn't draw that next breath, and was hoping for it. Because I hate to see her suffer, whether it is her coughing fits or wave of vertigo. Since there is no cure or recovery, and she has suffered quite enough, it seems a kindness to have it end sooner rather than later. We have all said our goodbyes and I told her yesterday several times it was ok for her to go, that the boys and I would be ok, and that we would be carrying her in our hearts forever. It would be a wonder if she had a moment of clarity before she goes, and create a certain bit of final closure for me, and for the boys. It's unlikely, so I am glad we did it earlier when she had more capacity.
Wednesday, November 16, 2011
She's not too concerned about her lungs, thinks it's a legacy of her hospital IV infusions. Her body just can't get rid of fluids as it's likely her liver and kidneys are starting to shut down. Her lessening of appetite and desire for fluids is also consistent with end of life symptoms. The nurse is just so competent and knowledgable - it's great to have her on the team.
There was a social worker who came along too. We talked some and then she stayed with Meagan while the nurse and I went to the living room to discuss medications. The woman came out after a while to get ready to leave but told us she had talked with Meagan about dying and asked if she had accepted it. Apparently Meagan told her something to the effect that yes, she had, and had already visited the other side, and it was beautiful. A comforting thought.
I did cheat last night and was able to get her midnight meds down orally, although I am now out of them and have to go with the IV push. She will get her 6am important meds via the IV. I'm also going to start her off with an "MJ laced" spot of chai tea. We are going to push that every couple hours just like regular medication - it does seem to help.
Even though I didn't get much sleep in the hospital, I did have some worry and concern alleviated by the nurses doing the medication administration - especially at night. Here I get it all - worry, concern, and lack of sleep.
Tuesday, November 15, 2011
And Mary Jane is at work too....
I did get her in, and got her rinsed off. Got most of the hair gel out from her surgery. We have decided not to shave the rest of her hair off for the moment - she wears a cap she purchased and she looks pretty cute with what hair she has peeking out.
She didn't like seeing the hospital bed in our bedroom - had a strong, visceral, negative response. I explained that we needed to keep her head and chest elevated and showed her where I was and tried to reassure her. She didn't protest long. I think she hears words ("hospice") and sees things (the hospital bed) that let her know these are end of days signals and even though she knows it intellectually (although forgets due to cognitive impairment), reacts viscerally.
She talks out loud in her sleep now - and it's pretty funny (that is, if you aren't trying to sleep) to hear the snippets of conversation. She had a difficult time when she woke up - lots of coughing which can generate some throwing up. Compounded with the vertigo. I got some medical cannabis in her, to try to ease that, since her nausea medications aren't due until 8am. Her eyes are much more noticeably not tracking together. She is more delirious this morning - I don't think from the side effects of the cannabis. She continues to have the twitching and spasms which are indicative of brain cancer activity - a condition called myoclonus. She is already on the best drug available to moderate the symptoms - her anti-seizure medication.
We have a new caregiver today - the agency is trying to piece together a permanent rotation - from 8am to 6pm. The assigned nurse coordinator from hospice is here at 2pm.
Monday, November 14, 2011
We were able to have a conversation this morning about declining further treatment and why, her prognosis and our goals, and timing (I told her we didn't know how long she would last but we would focus on each day one at a time). As before, she is sad, not scared. Very few tears, I would surmise because she is weary of the fight, knows it is at an end, and is ready for the conclusion. Wanted to know if boys knew (yes). And then she promptly forgot the conversation and moved on.
Lots of administrative hubub today - the hospital bed arrived (needed so she can sleep at an incline - her chest is quite congested). Arranged a caregiver aide for coverage seven days a week from 8am to 6pm. Arranged hospice. Had a visit with hospice transition nurse. Hope to get the medications nailed tomorrow. Got a baby monitor so when I am up and in the family room I can hear her rousing in the bedroom or trying to call me.
Last night I got about three hours sleep. I am hoping to improve on that tonight with her in the separate hospital bed.
She's feeling nauseous this morning even though I loaded her up with steroids, and two anti-nausea meds. We will probably have to go to stronger doses and IV delivery.
It's hard to believe this is happening. Even though it feels right. I have no anxiety or stress about the decision. Kaplan said we've done everything feasible and further efforts would just lead to more suffering and poor life quality even if she eked out some more time. I concur. She did not want to be in pain (or nausea) at the end of her life. I have seen this amazing woman take so much abuse, pain, and mental insults that there comes a point where you move to acceptance and provide love, comfort, and support. So now our work is to get her as comfy as we can.
Sunday, November 13, 2011
There is nothing good about this conclusion. It does feel right. It's also very sad.
I'll sleep on it and talk with the doctor in the morning.
I just know things are a lot different. I'm glad I have help starting today. Next goal is to get a hospital bed in here. Then to assess how the day goes, talk to Dr Kaplan and decide whether to try the whole brain radiation or go right to hospice. The boys are on board, they see her condition and it's very hard for them.
She has had a few lucid moments. Saying good night to both of them last night, she recognized then and told them each she loved them. That was lovely.
Saturday, November 12, 2011
This feels entirely different. It feels like I've lost "her".
I'm not trying to be a martyr. I know I need help; the last post was my thought process and factors influencing it. I do have a friend who is going to run interference for me on this and help arrange a company to provide someone to assist me. Since the needs are going to change it's important to me that I have one source to go to to adjust as needed. I don't want to hire someone off craigslist and I want the firm to have all the appropriate insurance. So I don't need any more suggestions or advice on this particular issue.
Separately I will be talking to our friend Bobbie, who is managing the Meagan's Faeries help website, about scheduling people to come in late afternoon to sit with Meagan so I can get a little exercise.
1. Her needs for medication and nausea management
2. Her personal care needs
3. Her need for 24x7 monitoring
4. Support with dressing and transport to and from appointments
5. My needs for relief and sleep.
Meeting those needs is complicated by:
a. her desire for dignity and privacy
b. her lack of awareness of the seriousness of her condition and declining cognitive ability
c. her medical condition and lack of personal mobility
d. her need for bathroom support in the middle of the night
e. her talking in her sleep and movement - preventing me from sleeping
f. hospice inability to enter picture until treatment is complete (brain radiation)
That's only a partial list. The pre-hospice nurse told me to just focus one day at a time - but I can't help trying to project and figure out what I need and what she will accept. Given I am sleep deprived as heck this morning it tends to drive your thinking about solutions.
It probably makes the most sense in the interim to get an able bodied day aide who can help me get her dressed and to and from her appointments. Insurance won't pay for this, so it's an out of pocket expense, but one well worth it. The pre-hospice nurse seems committed to helping me figure out the medication stuff with Dr Kaplan. And I can always have her suck on some lollipops. Although I have to say, she was pretty wacko yesterday - her tolerance for THC is pretty low, hahahaha.
Friday, November 11, 2011
Dr Kaplan also upped her dose of steroids so that should help nausea and appetite.
I also got a visit from pre-hospice services, a nurse and a coordinator. They were great. Will help me access services and navigate the system. I did learn one important thing, which is a bit disconcerting. Hospice will not get involved unless the patient is off all treatment, because of how they get paid by the heath insurance company. Her upcoming brain radiation - if she can do it - is treatment, palliative and not curative, but still treatment. So while she is in treatment I can't get hospice support. So I'll have to figure out how to manage the meds and nausea with Dr Kaplan and the pre-hospice team.
The goal is to get through the weekend with her relatively stable and "comfy". And then Monday see if we can make the move to get cleaned up, dressed and off to treatment.
Thursday, November 10, 2011
When it comes to medication and nausea management.
Rough day today. All she did was sit in her chair all day and nap. Not interested in communication or eating and drinking. Several bouts of nausea. Did get her some more prescription meds to work on nausea. Made no progress on getting her buzzed or cleaned up; she's been in her robe all day.
The rehab people came for an assessment today and after, said she was more a candidate for hospice than therapy. I meet with the hospice people tomorrow afternoon. The priority is to figure out how to manage her medical and personal needs with professional support. I've also got a call into our health insurance company to get a case manager. We know where this is heading so might as well get better support.
Very high stress level today.
She's gone back to sleep - her nausea I suspect was due more to mucus and clogging up of her throat. She has thrush - which is very common when you've had chemo and steroids. As a result over the last several days she has lost her voice - can barely be heard - and her throat is sore and scratchy. She is due for a new scopolamine patch around noon today so I hope that with that and some tea and lozenges to clear her throat she will be ok in that department.
Physically she is very weak. She cannot stand on her own nor can she push herself up from the chair or toilet to get to her walker or wheelchair. She can use her walker but only go a little way. She is shaking continuously (a family trait magnified) and when she is sleeping or dozing she gets body spasms - a bit disconcerting. The new bathroom arrangement has worked really well. The only downside we need to address now is she has no place to look at herself in the mirror and do her make up, etc. That is the next phase of our project. Mentally she can carry on a conversation, although it can wander or what she says can be unrelated. She will ask questions or make comments that are not connected to the current conversation. I'd say this most recent event has caused another step down in cognition. She's eating fine, and used her computer some.
We have the physical therapy agency coming for an assessment at 11 today. They do an assessment and submit to the insurance company a plan, which will no doubt be approved. We went through the same thing after her stroke with this company. Someone will likely come in 3-4 times a week for an hour each time to work with her on strength and getting her to be able to stand.
Separately, I'm also looking for someone to come in for 2-3 hours 3-4 days per week. I've got an inquiry in to one agency. Meagan is not at all thrilled about this - she values her independence and doesn't like people in our home. So we had a discussion about it last night. It's very difficult for her - but I think she has acquiesced to the situation. I simply cannot be the full time caregiver when she requires so much more support. She needs someone with her all the time. It's been a long march and I'm pretty burned out, and with a very rugged journey ahead I need more help. It's not hospice support - yet. More like personal support and assistance - so I can get away for short periods of time. But I would like to find one person who can be with us all the way to the end. It's not a friend or relative either - she values her dignity and wants to be able to conduct her relationships on equal footing. So I'm thinking this person could help her schedule visits and hover in the background.
If any of you in the Seattle area know of someone who would be interested in this kind of work - please contact me.
Today we are going to buzz the rest of her hair off and get her cleaned up. She might be able to take a bath today, although she can't shower and get her head surgical site wet. She's going to pull out Audrey, her wig, again.
She starts brain radiation on Monday. She is scheduled for 20 treatments, which occur Monday-Friday. On Wednesday she will get the staples out of her head. And we need to schedule a visit with Dr. Kaplan for Tuesday or Thursday. Along with physical therapy that will be a busy week. So it will be nice to just hang at our home until then.
Wednesday, November 9, 2011
Meanwhile, I feel terrible and look even worse. Ever been so tired you can't even sleep? I hope to solve that riddle tonight.
But assuming all that can be handled we are ready to get out of here. We will have a wheelchair and walker at home. The bathroom remodel is complete (thanks to our incredible contractor handyman - Ron). We will have to schedule her with the neurosurgeon to get her staples removed from her head next week, but they can be left in for a few radiation treatments, which start Monday.
I will not miss being at the hospital. It's a very lonely place. You can't really develop a relationship with anyone and the staff rotates so much you don't have consistency in your immediate care team. It's hard being away from our boys (and it's hard for them - it's one thing to uproot your life and move home, it's quite another to have an empty home to be in). It is also such a stark contrast to our home which is so warm, colorful and eclectic. Nothwithstanding their attempts at decor and art, the hospital is still an institutional, sterile (I'm not just talking "gel in, gel out"), and dehumanizing environment. I'm looking forward to sitting by our firestove with the dogs at our feet and watching the antics of our backyard fauna. Simple pleasures.
Tuesday, November 8, 2011
Radiation therapy will NOT start today. Next Monday. Got a call from Vermeulen with Raisis in the room and they had just gotten off phone with Kaplan. The troika decided to give her surgical site time to heal. Even tho cancer could be causing the nausea; it's pretty much all over the place.
All of this, and more, wears you down. It becomes easy to just go with the flow. But that's not always in the best interest of the patient as it's abundantly clear that within the hospital setting the left hand doesn't always know what the right hand is doing, there are transition and handoff errors, and people and systems don't talk to each other. So you have to fight your urge to acquiesce. And stay on point.
I got a bit of a battery recharge yesterday. Was able to be away for 6 hours. Had to take Daisy to the vet and do some chores around the house. Then had a wonderful dinner with Casey while Riley graciously stayed with Meagan. Steak and fries have a remarkably healing effect and sure beat hospital food!
This morning I'm trying to clarify what the radiation schedule is. On the hospital books she is supposed to start today at 2:30pm. But she will have to be transported by bed. I've got a call in to her primary radiation oncologist and make sure all the relevant parties are in agreement - and to find out if her staples need to come out beforehand.
Monday, November 7, 2011
I don't know the schedule for tomorrow - need to talk to Kaplan in the morning - presumably he's referee'd the neurosurgeon and radiation oncologist and has a recommendation.
She's feeling dizzy and disoriented when she moves or sits up. It only took her 1/2 hour after he left to throw up. It seems to me much like motion sickness instead of reaction to narcotic pain meds which she has been off of sense Saturday. The question is, is this a lingering effect of the hydrocephalus and/or brain shunt surgery or is it a sign of emerging effect of the cancer in her brain? It's quite disconcerting.
Sunday, November 6, 2011
There are no docs around and the nursing staff is sparse, although very nice. Hopefully we can get the great Dr Kaplan on point tomorrow morning. I'd hate to have her start brain radiation soon.
She's reading this morning and definitely has double vision. Lines and images are stacked above and below each other (not like crossing your eyes and the images are side to side). Have to hope this resolves. Other than that, is feeling ok. Some pain at her incision points in her belly but no head pain to speak of. Wants to get up and move about more today - a good sign for getting out of here tomorrow. Just need to get her onto all oral medications.
Saturday, November 5, 2011
All in all she handled it really well, not distraught or teary. But I always feel like a heel. I know I'm not at fault and it's just part of the job. It still feels bad.
You get a permanent parking pass, but you can never remember where your car is parked.
You know what all the codes mean on the hospital public address system, but only pay attention to "code grey" or "code red".
The kitchen staff at 4:30am starts making your usual when they see you come up to the order window.
You know where the good bathrooms are, as compared to the ones used by walk-ins off the street who are not visitors or patients.
You can start ranking nurses and identifying favorites.
The nurses start sharing with you their impressions of the various docs.
You know enough to avoid the hospital cafeteria for dinner. "Natural" does not mean free range, organic, or free of hormones or antibiotics. Broccoli can be cooked too long.
Meagan is doing well today. Ate some breakfast. Nausea is controlled. Napped a fair bit. She had several visitors. And is attempting to read tabloid magazines, even though her vision is still blurry. Had some occupational therapy Has agreed to watch some football with me tonight - Huskies against Oregon - go Dawgs!!
Friday, November 4, 2011
One the home front the bathroom improvements are in full swing. Our contractor is truly amazing.
We are embarking on some emergency remodeling at home to make the house (ramp off family room back porch) and one bathroom accessible. It gets torn up today so I'm hoping she's at the hospital through the weekend. Should be completed by Wednesday. All possible thanks to the efforts of a most amazing contractor/handyman who not only is efficient and productive but is a wonderful, caring human being. I'm on standby regarding a walker and wheelchair, probably both will be needed. It's hard to anticipate what might be needed and how able she will be, at least this timeframe. It's also daunting to think of her medication needs and how that will be managed. I am going to talk to Swedish Visiting Nurses about support.
She slept pretty well through the night. I got some sleep too. Much better than ICU.
Thursday, November 3, 2011
Whole brain radiation is scheduled to start Tuesday at 2:30pm. I think it is still twenty treatments - need to confirm with the radiation oncologist. We visited with her neurosurgeon for almost an hour; he is a friend of friends of ours. That was a nice surprise. We also ran into another friend who is a nurse, taking some high level training here at Swedish. Great chat with her as well. I also ran into an old work colleague. It's a big hospital, but still a small world.
Kaplan was by at 5:45am to check her. He said the neurosurgeon, Dr Raisis, would make the call about getting her out of ICU and up to oncology floor. The boys and I had about a half hour conversation with Dr Raisis last night. Very nice man.
The other day I was talking to someone and the subject of endurance came up. Endurance as in Shakleton's "Endurance" in Antarctica. A great book and a compelling true story. How do you keep going on when you've gone as far as you can. Is there a limit to what you can do? What do you do when you've reached the end of your rope?
I shall find out.
Wednesday, November 2, 2011
She was able to see and talk to her boys. We've already had one disagreement (telling the nurse how much pain med she needs and why - her recall is....murky....but she is still confident). I keep a Nick demerit tally on the white board in her room.
Her head is all wrapped up and she is sore in the various incision spots. But overall in good spirits.
What a relief.
But right here, right now I also have to balance her needs and keeping her emotionally stable, so she can fight the good fight and get through this surgery. By the tear gauge she's heard enough this morning.
Tuesday, November 1, 2011
Dr Kaplan said we didn't need to make the decision about radiation yet. He wants to wait at least ten days and have her recover and get stable and see how she's doing. He confirmed, no chemo.
According to neurosurgeon the plan is to not do the chemo, but to do whole brain radiation. That wouldn't start for around ten days after the surgery tomorrow. They want to give the wound time to heal. We'll discuss and confirm with Kaplan.
If they get the shunt in that makes the situation easier to manage. We then talked about what next. He's not sure chemo to brain or spinal fluid would be helpful or worth the side effects. That approach versus melanoma hasn't proven effective. So he agrees with what Dr Fer said yesterday And whole brain radiation won't solve it since it's in the fluid. So we may be at an end to treatment.
Thus her statement.
Then the night nurse came in to give her a round of drugs and we got to talking. She made a comment about how beautiful Meagan was. I made some comment about, yes, but she is not going to like being bald and you should see her before picture. The nurse was very gracious, but proceeded to tell me I was wrong. She said that when they go bald you are drawn to their eyes and can see into their soul. And that the inner beauty and love the person has comes shining through. And that in all her years of tending very sick cancer patients she had learned that the inner beauty and strength was what you needed to see.
Humbling and beautiful sentiment. See them as they "are", not as they are.
Ideally I would be able to drive the agenda and calendar. For example I would have Kaplan here at 6 today to discuss options and consequences and then schedule the shunt surgery at 1pm to allow me time to run home and work out and change. And have friends and family here. The neurosurgeon and general surgeon and anesthesiologist would accommodate our needs.
Yesterday, instead of having to be around from noon on waiting for the neurosurgeon I could have taken a break. But the caregiver cannot just leave or delegate to others. Because when they show unexpectedly, your knowledge and history end up being vital. Not just past medical history, but how Meagan is doing in the present. Literally a part of the team, albeit the junior member. The neurosurgeon asked me a ton of questions then hauled me into the visiting doc office and pulled up her scans and talked out loud while he thought about what to do. I would not have wanted to miss that in favor of getting some exercise. And it is also very clear that for something like Meagan's condition there are many divergent opinions, and being the functioning person at the center means you hear them all and are the only person able to sort it all through and make sure the primary doc, Kaplan, hears it all before his recommendation is developed. Yesterday I heard the stand-in oncologist say he didn't think chemo to the brain was worthwhile and why, but whole brain radiation was, the neurosurgeon dissed the radiation oncologist and said he wouldn't do whole brain radiation but would do chemo, and of course the radiation oncologist is hell bent for leather to do whole brain radiation. They at least all agree the shunt should be put in. I will be very glad when Kaplan shows up in a while, he gets to be the general contractor in charge.
All this to say, I am not trying to be here 24x7 and not accept help or relief. I'd love to have a regular schedule. I'd love to have a rotating cast of friends and family spell me, sit with Meagan, be with me. When we are in a recovery phase or stasis phase that might be possible. But in this phase, "high alert be ready for the important people when they show phase", it's just not possible. You get smarter the more experience you have so I should be able to manage it better than most. Today I was up at 4am, knowing I could get coffee downstairs before they close at 5am and regular facilities don't open until 6:30. I also know I am likely to see Kaplan around 5:45 to 7:00 so I'm ready and primed. Then once he's gone I know I'll have a window to get a break because they need her to not eat or drink several hours before the surgery, so even if I'm gone and they figure out they can get her in for surgery at 1pm, I can be back in time. I also know the surgery may not happen until Thursday. And we may not get notice until hours before. Oh well, having an accepting, zen-like attitude helps too.