Julie Updates
The following are a collection of emails that Bob has been posting to keep family and friends apprised day by day since Julie's journey to the undiscovered country began.
They are so beautiful and poignant that I asked Bob if it would be okay if they could be shared here with you all.
And so it begins, the beginning of the end, and the end of the beginning.
Here is the very first message that Bob posted to a friend when Julie was first diagnosed:
It’s pretty badly spread already: liver, lungs, pancreas, lower intestine.
There are no treatment options. Chemo _might_ add a few weeks but I'm told
they would not be good weeks. Her oncologist isn't recommending it.
Average survival is 5-8 months from diagnosis. The most we can hope for is
a year.
At least for now, Julie is handling the news much better than me. We need
your prayers and good wishes.
B.
So below follows Bob and Julie as they struggled through the good days and the not so good days, until there are days no more.
Thanks again to Bob for sharing these insights into Julie's final days. Much love to Bob and the family as they get through this difficult time.
Julie Updates by Date
6/08/09 - 6/09/09 - 6/10/09 - 6/11/09 - 6/12/09 - 6/16/09 - 6/17/09 - 6/18/09
6/19/09 - 6/20/09 - 6/21/09 - 6/22/09 - 6/23/09 - 6/24/09 - 6/25/09 - 6/26/09
6/27/09 - 6/28/09
Julie Update - 6/28
Julie passed away this morning around 6AM. She slipped away quietly in her sleep. She was in no pain and is now at peace. Several friends and family members are here now to help.
Information on services will be available in the next day or so.
B.
Julie Update - 6/27
There is little room for doubt we are facing the final days or hours for Julie.
She has been mostly asleep and/or unresponsive for the past 30 hours or so. She’s no longer on supplemental oxygen and at last check (Friday afternoon), the oxygen level in her bloodstream had dropped to around 50. She has been receiving .5ml of morphine sulphate and .25ml of Lorazepam every two hours but, while she does not appear to be in any pain, she moans in her sleep. No one has been able to figure that one out so far.
Last night, for a short while, she stopped moaning and started to lightly snore. In that brief moment, I reveled in the sound. It felt as if nothing was wrong and she was just asleep, and would wake up and be fine in the morning.
Wishful thinking.
She’s had no food in over 48 hours now and only a tiny bit to drink. The only care we can provide is to shift her in the bed every now and again, moisten her lips and the inside of her mouth with a little lemon water and pray she is at peace.
Julie’s dad and her brother and a few close friends will be coming by today to hold her hand and wish her comfort. There doesn’t seem to be anything else we can do.
More later,
B.
Julie Update - 6/26
They came for Julie’s hair yesterday.
Hospice workers Raiza and Cassandra were assisted by family friend Paula Murray, Julie’s dad and me to help prepare Julie’s long brown tresses to be donated to the Locks of Love organization. Julie was weak but gamely participated and, of course, clowned around and kept everyone’s spirits up.
Before |
After |
The hair cutting went well enough. We’ll be sending 4 braids about 1½” in diameter and almost 40” long to the Locks of Love people. They cut her hair at a little above shoulder length, enough to frame her face so she doesn’t look all that different. Julie’s dad asked for a small braid as a keepsake and it was a good thing he did; hadn’t thought about it but, on reflection, wanted one for myself.
More of the “hair” pics will be posted to the FriendsOfJulie site shortly.
Unfortunately, all the activity completely wore Julie out. She was too weak to even turn herself over in bed without assistance, which made for a rather long night. To make matters worse, she’s decided she doesn’t want to deal with the oxygen hose. The biggest benefit of the supplemental oxygen was in her mental clarity and ability to communicate although it’s really just a comfort issue. It makes figuring out what Julie wants or needs more difficult but the deciding factor is whatever makes her more comfortable. We will figure out how to deal with any other issues as they arise.
More later,
B.
Julie Update - 6/25
The downhill slide continues.
Julie ate nothing and drank very little yesterday, and spent most of the day sleeping or dozing.
Her blood-oxygen level has been a source of concern for several days and has been monitored closely. When the hospice nurse checked yesterday, it was down to around 80 (normal should be 90+) and she recommended we get Julie on supplemental oxygen. We had been weighing the pros and cons of this for some time: the discomfort of the hose and cannula (the piece that fits under the nose and supplies the O2 directly into the nostrils) plus the extra noise of the oxygen concentrator versus the benefits of better oxygenation but when her O2 level dropped below 80, there was no more room for debate.
We had the oxygen systems brought in and hooked her up. It only took a few minutes to see the O2 level in her bloodstream to rise up from 77 to 92 but it did not relieve much if any of Julie’s weakness as we’d hoped. On the other hand, at least she seems to be resting easier and her breathing does not seem to be as labored.
It’s pretty clear Julie doesn’t like it. In a fleeting moment of clarity, she asked if anyone was benefitting from the oxygen treatment. Told her it made me feel better and she seemed content with that. Even this close to the end, she’s still trying to put my needs ahead of her own. I continue to be humbled by her compassion and bravery.
More later,
B.
Julie Update - 6/24
Not so good yesterday.
Julie has been getting progressively weaker for the past few days; yesterday she wasn’t able to make it the 10 feet from her bed to the shower even with assistance from the health tech and me. She’s starting to need some help just to turn over in bed. Her food intake has also dropped off again. She had a few grapes and some yogurt yesterday morning but has expressed no interest in eating since then.
Another bad sign: she is ready to get rid of her hair. She talked with the health tech about it and unless she changes her mind, the tech and another hospice volunteer will be out on Thursday to clean and braid her hair then send the braids off to the Locks of Love organization. They are guessing they might be able to get as many as 6 hair pieces from Julie’s donation.
That donation will benefit several other people and it’s typically Julie to want to help others but it’s a hard step. There are times, briefly, especially early in the morning, when you can look and talk to Julie and you don’t see her sickness or the hospital bed or any of the accoutrements of a sick room; she seems as perfectly normal and natural as she ever was. It’s going to be much harder to find that “real” image of Julie once her hair is gone. That’s just my perception though; the reality is that Julie will be more comfortable without having to maneuver 3 feet of hair every time she wants to shift position and at this point, Julie’s comfort is all that matters.
More later,
B.
Julie Update - 6/23
Good day yesterday, but a long one.
Julie was only able to see maybe 3 folks plus the hospice nurse before she pooped out and slept for most of the rest of the afternoon. She was probably a little run down from all the activity over the weekend. Julie’s Dad started to read to her from “Misty of Chincoteague” but didn’t get more than a few pages into it before she fell asleep. Hope he has better luck tomorrow.
Around seven, though, she woke up and wanted macaroni and cheese with fish sticks for supper then we sat and watched “Amadeus” together until after 11 (Thank you for the DVD and player, Michael and William!).
A friend of ours is beginning to set up a “tribute” web site featuring some pictures of Julie, a place to leave stories, notes and messages and a few other odds and ends. The site will be http://www.FriendsOfJulie.com once it’s up and operational. We are asking for any pictures, video clips, etc featuring Julie that we can use for content; if you have anything like that you can share, please send them to me and they will be passed on to the webmaster.
More later,
B.
Julie Update - 6/22
Yesterday was almost a repeat from the day before. Another good day, lots of visitors and Julie wanted BARBEQUE for dinner. One might wonder if there is a correlation between Julie’s appetite and the number of visitors, and if it’s a good thing. Need to ask the nurse when she comes in today.
Julie’s dad is in town now; he stopped by for a little before heading to his hotel and will be back sometime this morning. Julie is actually looking forward to the visit; Jack has some really sweet activities planned for her.
Julie’s attitude about all this is amazing. She has not needed any of the anti-anxiety drugs for 4-5 days. She’s remained sweet and cooperative even though just getting her up to answer a “call of nature” is extremely painful. She’s also been kind and gracious when she’s tired or when folks who she previously found annoying come by to pay their respects. She often makes a sarcastic comment about “quiet grace and dignity” (a joke line from the “Young Frankenstein” movie) when she needs help with personal necessities, but she really is showing grace, dignity and courage while she’s standing on the edge of this mortal precipice.
Even after 20 years, my Julie is proving to be more awesome than imaginable.
More later,
B.
Julie Update - 6/21
Another good day.
Julie had several visitors yesterday; probably too many as she was exhausted by mid day but there are so many folks who want to come by and wish her well, it doesn’t seem fair to turn them away. Today’s schedule is nearly as packed as yesterday but we will try to keep a little better control of the traffic flow.
Surprisingly, Julie was serious about her desire for Kentucky Fried Chicken (previously, she had another name for KFC but it shouldn’t be used in polite companyJ). She ate more yesterday then she has in the past week, including a chicken leg, mashed potatoes and gravy, cole slaw and a biscuit. Here’s hoping that’s a good sign.
Her blood oxygen level seems to be holding steady. She may still need supplemental oxygen but not quite yet. The nurse thinks the hoses and such will not be comfortable for Julie and wants to put it off as long as possible. Can’t disagree with that: comfort is the only game in town now.
Julie’s dad will be in sometime this evening. While they’ve had their differences in the past, Julie is looking forward to seeing him. That should make for a nice Father’s Day present.
More later,
B.
Julie Update - 6/20
Julie had a much better day yesterday and a good night and morning so far today as well. Switching to a regular dose of morphine rather than “as needed” seems to be working well. She didn’t eat much yesterday but she ate a cup of yogurt this morning and said she wanted Kentucky Fried Chicken (this from my little health food “nazi”! J) for lunch today.
Her blood oxygen level is still a little low but not dangerously so. The hospice nurse has been coming by daily to monitor her vitals and doesn’t think supplemental O2 is required for now. Most of the mottling around her knees and hands has diminished as well.
No news is good news, so this will be a short note for today.
More later,
B.
Julie Update - 6/19
Not so good news for today.
Julie has been feeling more pain since Wednesday night and asking for pain killers more frequently. Most of the pain is coming from her lower back around her kidneys, probably from the adrenal gland which is also cancerous. There is some mottling in the skin around her knees and the backs of her hands and a touch of blue (cyanosis?) to her lips. Her belly is also swollen and tender; this is likely due to further enlargement of the liver. When the hospice health tech was out to help Julie clean up a bit, she commented on how much weaker she seemed today than when she was here on Monday and considering her other symptoms, suggested we contact her nurse.
The hospice nurse came out and checked Julie out then said there wasn’t a whole lot we can do about the weakness but recommended we start giving her morphine every four hours rather than as needed. She says it will be easier and provide more effective pain management if she’s kept on a regular scheduled dose (still 0.25 ml at a time). We’ll see how that goes.
The oxygen level in her blood is a little lower than it should be but just barely. The nurse will be back this morning to check again and decide if we need to start her on supplemental oxygen.
We also had a new adjustable-pressure air mattress delivered that should be more comfortable for her than the hospital-type she’s been using up to now. In this regard, it’s a good thing that Julie is somewhat oblivious to things. The pump motor for the air mattress runs continuously with an annoying low-pitched buzz. It masks a lot of what can be heard on the baby monitor we’ve been using to keep an eye on things when not in the room with Julie.
Ah well, can’t be helped.
More later,
B.
Julie Update - 6/18
Julie is beginning to wane.
She’s sleeping around 16-18 hours a day now but she is still able to see one or two visitors a day for a short while before she starts getting too tired. The hospice nurse says this is normal for the final stages of her type of wide-spread cancer. Amazingly, she’s only wanted the industrial strength pain medication a few times so far but the nurse tells me she will probably start needing regular doses soon, probably by the end of the week.
Her time is measured now in days; no more than a couple of weeks unless something changes.
We are both getting lots of help and support from the hospice folks and many of our friends.
Julie is still eating a bit. She wanted blueberry buckle coffee cake for breakfast (ate almost a whole 1” square piece! J) and some cantaloupe yesterday.
Julie had a visit from our good friend, Lee Bohannon. Lee had been out of “the loop” and didn’t know about Julie’s situation until a couple of days ago, which made for a kind of sad visit but it was nice seeing old friends reunited. Seems to be a lot of that kind of reconnecting going on.
More later.
B.
Julie Update - 6/17
Surprisingly, Julie slept through the night Monday night. She was snoozing when checked around 11PM last night and she didn’t make a sound all night until around 6AM. No drugs, either. Good sign or bad, that’s the first time she’s slept all night since she came home from the hospital.
It was a busy afternoon around the “Hise-hold”. A hypnotherapist friend of Julie’s dropped by to see if there was anything she could do to help keep Julie more comfortable. She showed Julie some self-hypnosis techniques that may help her stay more focused and at peace with her situation. Julie hasn’t shown a lot of distress in that regard but every little bit helps.
The hospice case manager, Liza, came by a little later to braid up Julie’s hair (and did a fine job) then helped me sort out a bit of the nonsensical paperwork that the government and insurance companies deem necessary in situations like this. If it hasn’t been mentioned before, all the St. Luke’s hospice folk have been invaluable in helping us through this ordeal. Enough good things cannot be said about them.
On the heels of that, the “revved up Reverend” Scott Meyers (Julie’s term) came by to discuss further details about the final services. He has kindly offered his church for the visitation and service, and will be opening the service and saying the final prayers.
All that was enough to exhaust Julie’s waning reserves and she slept through most of the rest of the afternoon.
One of our local volunteer friends came over later in the afternoon and house-sat and allowed me to get out and do errands and a pharmacy run.
Around 6:00, Julie complained of a pain in her side and asked for another dose of morphine.
Julie mentioned she wanted a hamburger (of all things) for her dinner and, of course, her will be done. After the errands, we sat and ate hamburgers and fed her French fries. She was very weak and faint; not sure if that was the morphine of if she was just tired
She slept pretty well again last night, waking up only once around 3AM. We sat and talked a while then she drifted back to sleep.
More later,
B.
Julie Update - 6/16
Julie had another good day. Wish the same was true for me.
We got a reply from the Locks of Love folks saying they couldn’t do anything to help with Julie’s hair but the hospice health tech, Raiza, came by in the morning and, since Julie had a shower on Sunday, just chatted and detangled her hair and got into a semblance of a braid. Not the best job in the world but you could tell immediately Julie was more comfortable with it.
Since they were sharing mostly “girl” talk, Julie sent me off to the kitchen to make some chocolate chip cookies for them. It must be good to be the queen. J
Later in the morning, the hospice nurse, Brenna, showed up and spent quite a bit of time talking with Julie while checking her out. Julie had complained about some pain in her lower back and the nurse recommended giving her a dose of the Roxanol (morphine sulphate) which pretty much laid Julie out for the rest of the afternoon.
On her way out, Brenna stunned me by saying she thought Julie might only have a couple of weeks left. I would have conservatively guessed twice that. Sure, she’s weak but her mind is still strong, she’s eating fairly well and she’s still mostly able to get out of bed and make it to the bathroom and such with only a little help.
Not arguing with the word of an experienced hospice care worker but praying she’s wrong. We have been looking forward to sitting out on the deck and watching our neighbors compete with each other’s fireworks again this year on the 4th. It quite the display last year and we are expecting a repeat performance this year. Not asking for much more than that.
Julie does not know this, and doesn’t need to hear it.
Later, we were visited but the hospice chaplain, Harv. It seems we have a lot in common: he is also a science fiction reader. He asked a few questions about where we each were spiritually but we spent most of the time going on about our favorite writers and books. Not a bad guy.
After another nap, we shared a couple of tomatoes from the garden stuffed with tuna salad and had some ice cream with raspberries for dessert. It was starting to cloud over by then so we sat and watched the rain move in. Didn’t say much, but didn’t really need to.
More later.
B.
Julie Update - 6/12
Julie had a much, much better day yesterday. I think all the activity on Wednesday (plus facing our first night playing the “waiting game”) left us both overwrought.
Before yesterday morning, Julie hadn’t eaten anything for nearly 24 hours and had only a little orange juice to drink, and I was starting to fear the worst. Since yesterday morning, though, she went though two (!) bowls of grapes, a cup of yogurt and had asked me to make some tomato soup for her but fell asleep before I could get it done. Later in the evening, we ate the soup together as I sat beside her bed; we chatted for a while then just sat there in silence until Julie fell asleep.
Bittersweet.
Her cognition has been better and the periods where she’s “home” have been longer for the past day. Perhaps selfishly, we’ve cut the Lorazepam back to every six hours instead of every four. The anti-anxiety drug knocks her out pretty good so as long as she’s not having any trouble, I want every second with her I can have. She seems to do pretty well as long as she doesn’t get tired or over-stimulated.
She slept through the night fairly quietly, only waking up and stirring around a couple of times but it was no trouble to get her settled back down. She said she wants a shower sometime today (we’ll wait for a volunteer or the hospice nurse is here for backup before attempting that, just in case) and she asked for a half cup of coffee this morning.
As encouraging as her improvements have been, it’s difficult to keep in mind that it’s probably an illusion. There is often a period called a “hospice honeymoon” when symptoms show signs of regression or improvement just after a patient is brought home, primarily due to simply being back in familiar surroundings. It can last a day or a week (it’s different for every person) but the inevitable looms like a shadow in a corner.
We are taking things one day at a time and making the most of every minute we have.
More later.
B.
Julie Update - 6/11
Julie is home now. It was a tough day all around but several good friends and the kind hospice people have made it mostly bearable.
We’ve had a hospital bed brought in (our normal bed presented a fall risk) and Julie seems to be resting comfortably. She’s not on any pain meds but she’s been given an anti-anxiety drug called Lorazepam that keeps her pretty woozy although she still has moments of crystal clarity. She spent a while yesterday afternoon sitting up with us in the living room for a while and even wrote out a list of people she thought could help organize volunteers to help keep the household running.
Somehow, we made it through our first night at home. Julie woke up several times but didn’t seem to want anything. She didn’t really say anything much either but preferred to communicate through gestures. I am puzzled by that. Mostly we just held hands and looked at each other.
More later
B.
Julie Update - 6/10
Just a short note this morning:
The bittersweet news is that Julie will get to come home today. It’s going to be a complete madhouse around here with cleaners, hospice people, hospital equipment installers and (bless you all) a number of volunteers coming out to help “Julie-ize” the house. Many, many thanks to everyone for the support.
There’s one observation I’d like to share: it seems that Julie is much better, almost her old self, first thing in the morning but you can see her “fade” as the day’s activity progresses. I don’t know what that means (if anything) but there it is. It’s going to be hard on her today with all the hubbub but there’s no getting around that.
I want her to have a day or two to get some rest and get used to the new conditions but I hope we can start seeing visitors by Saturday. No offense intended but please call first and plan on short visits so she doesn’t get too worn out.
More later.
B.
Julie Update - 6/09
This may be old news to some on this list but maybe not to all.
There is no way to sugar coat this so I am going to just lay it out there. After additional CAT scans, an MRI and X-rays, Julie has been diagnosed with “significant tumor masses” throughout several parts of the brain (at least we know it wasn’t a reaction to the Vicodin now). The doctor said she was not familiar with the kind of cancer Julie has nor this particular type of brain tumor, but if she saw tumor formations in the lung like she sees in Julie’s brain, she would put the life expectancy in weeks, not months.
We knew from the CAT scan in April her liver had “innumerable” cancerous nodes and was starting to show lesions. When we also saw some CAT scans of her liver from Monday’s session, it was about double the normal size and about ¾ of even the enlarged size was cancerous.
There is nothing that can be done except to bring her home and keep her comfortable.
Julie is still in the ICU at St. Luke’s hospital and will likely be there until Wednesday. Her mentation has been affected (the doctor said that would wax and wane); she answers questions with short responses (that sometimes don’t make sense) but every once in a while she will make some comment and sound just like her old self.
Some good news is that she’s not in any pain, and not taking any pain medication at this time. The first oncologist we talked to said it was going to be a race to see which cancerous organ group took her out first and if she was lucky, it would be one that wouldn’t cause her a lot of pain. It seems, in this regard, Julie hit the jackpot.
We hooked up with the St. Luke’s hospice group yesterday. At first blush, they seem to have an awesome “machine” that can take care of just about everything. Someone is supposed to come out to the house today to do an assessment of what changes we’ll need to make (grab bars in the bathroom, etc) to keep her safe and comfortable; not sure but they may actually take care of those modifications for us. They will also be taking care of getting a hospital-type bed installed and any other special equipment we may need. Already they are making arrangements with a local pharmacy to make sure we have access to any of the high-powered liquid pain meds she may need later on.
More on that as the situation unfolds.
Please feel free to forward these emails to anyone who may be interested or send me their address and I will add them to the list.
Last note: Daryl Guberman sent me a nice video he shot of Julie when we visited in Connecticut last month. He’s agreed to allow me to post it to a website where it can be shared with family and friends. I will let you know the URL when it’s available (probably tonight or tomorrow morning). If you have any pictures or the like you would like to share, please send them to me and I will post them as well.
B.
Julie Update - 6/08
The short version: Julie had to be taken to the hospital last night. She has a high blood sugar level (336 if that means anything to you), high blood pressure and a low potassium level. She was admitted because of the effect the low potassium could have on her heart. Not sure yet what today will bring. Hopefully her vitals will be better and they will be able to release her today or tomorrow.
The slightly longer version: Saturday afternoon, Julie finally called her doctor and requested some medication for her pain. By Saturday evening, she was animated, agitated and chattering a lot but not making a whole lot of sense. I attributed that to the Vicodin and called it a night.
On Sunday morning, she was no better. Her actions were becoming irrational and she kept repeating nonsense phrases over and over, interspersed with any written word she saw. I still though it was the Vicodin until the final straw: she took a shower with her clothes still on then crawled into bed without even toweling off. I was sure by then something else was wrong, especially since I had counted her pills and was sure she had only taken the one tablet on Saturday and no more.
I called her doctor who confirmed her actions were not normal for Vicodin and recommended getting her to a hospital and having her checked out. Julie wouldn’t be budged by request, coercion or main force and I wound up calling for an ambulance. Happily, she didn’t put up much resistance after the paramedics arrived.
So, how was your weekend?
B.