A Tough Day Emotionally

While there were some very enjoyable times for Meagan yesterday, there were also some considerable lows. The cancer books don't tell you too much about how to deal with these situations so you have to make it up as you go along, trust your instinct and hope like hell your response is helpful.


I used to think the two hardest general questions were:  "what is the meaning of life?";  and, "what is my purpose?".  Tolstoy, in his book The Three Questions, had it like this: When is the best time to do things? Who is the most important one? What is the right thing to do?".


Boy, was I wrong, and so was Tolstoy. I heard the two hardest questions yesterday,


"Is there any hope for me?"


"When can I be your partner again and not your charge?" Typically followed by, "do you still love me?".


Usually questions like these come from left field, so I am not fully prepared intellectually or emotionally to address them. I do think my instincts are pretty good, so my first reaction is to simply hold her, because an immediate answer is not aways required. The questions are clearly asked out of fear and insecurity and sometimes the best answer is to provide the comfort of being there and holding her to assure her she is not alone in this battle.


I hope you all know what my answers are. It's not necessarily the words that are important though, but the conviction and sincerity with which you say them. It's especially challenging when she is fragile due to her medication - no fault of hers at all. The easiest one to answer is the "do you still love me?" question. That requires a quick, certain, sure, forceful response. Along with a reassuring long hug. 


"Is there any hope for me?" is a little tougher - not because of my response ("of course there is hope") but because of the cognitive dissonance within me. If I answered, "I don't know", which is probably more along the lines of what I actually think (given what I know about this disease and it's typical progression and the best drug developed in decades for the disease which didn't work for her, and the metastasis to the brain), it would generate a response which, suffice to say, would not be all that helpful. So sometimes one answers with a response based not on what you might think, but what that person needs to hear - to keep them going, positive, hopeful and able to cope. That's when your role as a caregiver kicks in - to provide emotional support and not necessarily answer the question asked.


The other one is tougher. My response is that this is just a phase and our normal balance will be restored. The job of any partner is to support their significant other in sickness and in health - right? I tend to focus on the technical aspects - the medication schedule and tapering which will improve her cognitive ability, at least to post-stroke condition. And reassure her that notwithstanding the caregiving aspect, she is my partner and does provide me reciprocal benefits. I know she is frustrated at not being able to care for me or do the things that a partner does, and is trying to find ways to do it to the best of her abilities, such as making a list of all the movies we need to see this summer. But the reality of the situation does make it a tough question. It's been a year now since her first diagnosis of malignant cancer and ten months since her diagnosis of metastatic melanoma. And it has been a downhill slide the whole time (physically and cognitively), with no real end in sight. And the situations keep getting more and more severe. It's one thing to take her to a scheduled partial mastectomy, it's quite another to rush her to emergency and have her undergo brain surgery and come out with a loss of function. Our non-emergency days become focused on medication schedule and ensuring she gets them, future medical appointments, discussing scenarios (when is my next treatment and what is it), being her social secretary (although she is slowly trying to take that back), and making sure she is safe and cared for. And that does change the nature of the relationship. And I'm not sure it's really temporary. 


So this is another instance where you put the best interest of the questioner at heart. It's the right thing to do. But it's not the most satisfying answer internally and it raises more questions internally. While the advice I give her pretty consistently about the disease in general is sound (focus on one treatment at a time, live in the moment, enjoy life for what it offers today) - it's not always advice I can practice myself. So in the wee hours, I do spend a lot of time wondering where this all goes.

Frustration for Meagan

The medications she is on are really a challenge for her. They make her fuzzy, forgetful, and unsteady. For a gal who is darn sharp, this is very frustrating. She hates to be reliant on me because she doesn't want to be a burden. So she will try to do something, like put the dishes away. Many things she is successful at, and I applaud her efforts. Sometimes the results are a tad humorous and have some consequences, like when she tried to open the bottles of non-alcoholic beer with the wrong end of the opener and ended up knocking one over onto the floor, after it was partially opened. She knocked over three full glasses of water yesterday, which she keeps on the table near her chair in the family room. She got pretty upset over it, but we tried to make light of it, and Casey was funny and told her she needed to put the water outside of her wheelhouse.

Unfortunately she is on the full dose of medications until at least next Tuesday, when there is a possibility that Kaplan will start tapering her steroid dose - that will definitely help. I think she is slowly getting used to some of the anti-seizure medications, but we don't see the neurologist for another ten days so any reduction in those is still a ways off.

So in the meantime we will just work to keep her safe and keep reassuring her these are temporary effects and that she will recover all her faculties she had before the seizures.

Numb

There is a period of time after you get back from an extended stay at a hospital in which you are simply numb. While at the hospital you get very little sleep, you have this constant bombardment of noise and stimulation from the ICU, you are trying to process all kinds of incoming information about medical condition and what it means and what to do, and you are tending and caring for your loved one who needs emotional and physical support. Even in the best care facilities like an ICU, the nurses get busy and you need to remind them of things or go find a substitute to change the saline solution or medicine drip. Then of course there is the added burden of managing the (legitimate) incoming requests for visits and status updates. Sometimes I feel like just chucking my iPhone in the trash.

Coming home is a relief in lots of ways. There is still a lot to manage - the medication schedule, the emotions, being the social secretary, the dynamic with the kids, household management and food, and the physical aspects (wound management, navigation around the house safely). But there is a bit more time when she is on her chair or with a visitor and I have some time. And I find myself just completely drained of initiative, motivation or desire to do much of anything. Sometimes I simply sit and stare out at the garden or if I'm lucky enough Casey will come back and want to throw the ball around with me and we can enjoy that mindless ritual of the back and forth of the throw and smack of the catch.

This is just a stage, I know eventually I get my mojo back and start doing the things I would like to do. It reminds of of times when I've gone on long competitive bike rides for 6-12 hours when at the end all you want to do is just sit on the ground and drink a beverage and stare at the trees - because you are just physically and mentally drained. I'm grateful that at least the weather is improving so I can go through this period being outdoors some.

Home, but new phase

It's good to be home. Good to be able to get about eight hours of sleep last night, only interrupted by the midnight alarm for medication. Nice to not hear constant alarms and hospital noises. I realized last night that in the last two months I spent twenty nights in a hospital. I've probably slept less in the last two months than in any period of our lives, including when the boys were newborns. I'm amazed my back has held up so well. Of course my fitness and conditioning for biking is completely shot, and I haven't ridden outside once this year. But maybe for the next month and a half I can get outside, especially if summer arrives, before Meagan goes in for her two week stay for IL-2 treatment.

While we are home, it is still difficult for Meagan and in some ways more difficult for me. The medications she is on for her anti-seizure and anti-inflammatory are not kind to her brain. They make her loopy, fuzzy, forgetful, and not able to think clearly. She is aware of that, and it really upsets her. She wants to be more self-sufficient, but can't, and is upset that she has to rely on me and the inconvenience it means. So she is much more emotional (she cries more). It will likely pass as she gets used to the medications and the medications are gradually reduced.

Being out of the hospital is good, but it puts all the responsibility on me for making sure she gets her medications at the right time and right dose. She is simply not able to self-manage yet. She's on a lot of different medications right now, so there is a lot of organization (my iPhone calendar with reminder alerts is useful that way). Plus we still have some wound management to take care of from her skin tumor removal last week; the dressing needs to be changed twice a day. Having the nurses do all this was pretty nice.

The good news for today is that I acquiesced to the extremely kind offer of a dear friend to get a massage from a person who is apparently fabulous. That is my big adventure for the day. One that sounds pretty good at the moment.

Home and she's napping

In her chair by the fire. Got the dog and kid greeting.

It's Official

Kaplan gave the thumbs up. Going home this morning!

4:00am Lab Draws

Every morning at 4:00 the nurse comes in and draws blood. It's an easy process for Meagan because of her port o cath, no needles. They do this so the printout or computer results are available to Kaplan when he does his rounds between 6-6:30am. Then he can put in whatever orders are necessary, like yesterday when he ordered her up two pints of blood and the transfer to a regular room out of ICU. I'm hopeful today we get the all clear and he gives discharge orders and whatever remaining prescriptions she needs (I filled three yesterday at our favorite pharmacy, Kattermans, and she will need two more, her steroids and an antibiotic for an infection she picked up).

Unfortunately these lab draws require the lights on, so it pretty much acts like an alarm clock for me. It's good in the sense it does get me down to the coffee window before it shuts between 5-6:30am (a really stupid thing I intend to write to the hospital about). but it almost certainly guarantees a nap will be needed at some point during the day. I had better get used to this schedule for our two week IL-2 stay coming up in a couple months.

At least the coffee is good. The food here at Swedish is surprisingly good.

End of the day.

Blood infusions completed. She changed out of the hospital gown into cozy home yoga togs. They brought a cot in! I may sleep on something horizontal and in one piece for the first time in six nights The door to the room closes! This is feeling like a Four Seasons!

Yippee!!

Out of ICU! Up on the 12th Floor in a private room with a beautiful view to the east.

Neurologist says she is fine with discharge tomorrow and is writing up the prescriptions. So it will be in Kaplan's hands once he is satisfied with her vital signs. So bring on the red blood infusions!

One more day, but out of ICU

Kaplan was by at 6:10am. He ordered the transfer from ICU to an upstairs normal hospital room. Wants her here for one more day/night for couple reasons. Gives her a chance to be on all the anti-seizure and steroid medications orally instead of intravenously. Two, it gives him an opportunity to confer with the neurologist and make sure everyone is clear on the at home care plan and prescriptions. Three, she is low on red blood count so needs two pints of blood (which can be given either in ICU or normal room) which takes a couple hours to match, order up and then 2-4 hours per pint for infusion. They monitor every 15 minutes during blood infusion for reactions.

We will also get a visit from the neurologist this morning and the surgeon to check her back incision.

Last night was very tough emotionally for her. Getting unhooked by late afternoon will be great. It's always hard when your expectations are raised to get home and then you have to wait one more day. But being able to be mobile by later today will be great.

Last night in ICU?

Maybe, maybe. The weekend neurologist said no indication on the EEG of sub-clinical seizures over the last 24 hours. All signs point to the irritation around the original surgery site and inflammation, swelling and a tad bit of bleeding due to the Cyberknife radiation treatment. All of which can be controlled by the anti-seizure meds and steroids.

So we expect to get the thumbs up on a discharge tomorrow once we see Kaplan and our attending neurologist.

So one final night in ICU. One final night in my little nook in her room and bad recliner. She is doing much better too. Still fuzzy and forgetful but hopefully just side effects of the meds which will diminish b

EEG wires off!

Taking that as a good sign that they have enough data. Waiting for neurologist to visit and tell us what the story is. I hope they have med type and doses figured out. She is happy to be untethered!

And I'm going home soon for 3 hours to watch the game with the boys before returning for what I hope to be the last night for this go-round of our hospital stay.

Some good news

Our weekend doc, Dr West, came by and said the MRI on the right side showed nothing, according to the radiology neurologist guru. Definite evidence around the surgical and radiation sites but that was expected. So at least no new tumors.

Waiting for the neurologist to show and authorize getting her discontinued from the continuous EEG. Hopefully they have the anti-seizure dose and drug types down so she can prepare to get out of here. Doctor also authorized getting her disconnected from all the other tubes and wires and getting her up and moving. Basically setting stage for discharge tomorrow with a fistful of drugs.

Sunday morning update

The day breaks early for a cabana boy at the hospital. Even though we have a private room with sliding glass doors (that's reason enough to be at ICU at Swedish vs Harborview) the noises of the unit percolate through. Like the crazy person next door. Or alarms going off (vital stats out of range). Or the nurse coming in to roll Meagan to the other side. But I have also developed an internal alarm clock. By a quirk in scheduling between the all-night cafe window and the main cafeteria, there is an hour and a half to two hour gap between coffee availability. So I have to get to the internal cafe window by 5:00am or no coffee until 7:00am. Thus my internal instincts kick in and I'm up by 4:45. Given that I'm sleeping in my clothes there is no problem getting there in time.

Today we should get the results back from two things. She has been wired up to a continuous EEG all night and most of yesterday. They should be able to spot any issues and correlate it to medication and hopefully all seizure activity is under control. The neurologist will come by at some point and let us know findings and a medication game plan. We should also have definitive results on the MRI. It was sent to a specialist in radiology neurology. In any event she will have an MRI likely monthly for some time to come. We also put in a call to her surgeon and the on call doc was kind enough to come by and check her back incision from the tumor removal last Monday. It's been under a lot of stress because she has been on her back so much and needed some care.

It's a beautiful sunrise. Let's hope that bodes well for the day ahead.

Another round of continuous EEG

She is getting set up for another round of continuous EEG monitoring which usually means overnight. Goal is to assess brain wave patterns and any sub-clinical seizures. I suspect they are doing this to evaluate existing anti-seizure medication efficacy as well as trying to figure out the right brain activity if there is no discernible tumor. It's a messy process involving gluing electrodes all over her head with stuff that stinks of pure alcohol, them wrapping her head in gauze and putting a gauze sleeve over the 30 something wires running from the electrodes to the computer.

Expect a neurologist visit later.