Welcome to Lynn (Butch)’s site. Please sign in to show your support.

Journal

View comments
June
15
2021

June 14, 2021 - Update . . . no date

Greetings, to all.

I have yet to respond to the many kind words sent in cards and emails . . . I'm told I can take about a year before the responses by me are considered truly delinquent. Meanwhile, the cards sit here by the computer and I look thru them occasionally . . . the love and remembrances are comforting and none are taken for granted. Please be patient with me.

People have been asking about the memorial, distribution of ashes, and "now what?" Well, I'm living in a rather disheveled house, knowing I have got to clean things up, but am still dealing with grief, "life after . . .," and my own anxiety and depression. But I'm doing remarkably well, considering . . . actually, I don't know considering what, since this is a first time experience for me (and OK to have it be a first and last). So there's no control group. But I'm sleeping fairly well and actually do get a thing or two accomplished almost every day. However, I have also managed the art of pushing a "to do" item from one day to the next on my electronic calendar (something I couldn't do on my hard-copy date book of many years past). 

So, as for the memorial . . . I had hoped to hold it near Butch's birthday (Sept. 2) this year, but, in reviewing those who want to attend, current situation, and future possibilities (as far as travel restrictions and precautions to take for gatherings), I have elected to hold off. I have been in close contact with the family that will be hosting the "event" at their "barn" up near where I live in Lake Mathews and we have settled on next spring . . . so just hold that open! (Joking . . . I mean, not about planning to attend, but about holding out an entire season, just in case attendance can be arranged.) We definitely want it to be held after the "cold" months (always something of a joke, but the rains of February and even March can put a damper - pun intended - on an activity held partly outdoors). But we also don't want to plan it into the summer when the heat up where I live can be unbelievably . . .  well, HOT! So I'm thinking of April or May. Let's see how this change in "pandemic" status, as just instituted here in California (no longer categorizing activities according to a "colored tier" system), opening up businesses with no restrictions (mask, distance, # permitted). Who knows, that could trigger another wave of cases (I pray not, but am sort of used to the careful lifestyle and doubt I'll be jumping in any pools with large groups or attending any festivals, conferences, or conventions much before fall, if then). I am also hoping that the memorial will involve a 2-part experience (attend one or both): a church gathering in our chapel (down the hill in Corona) in the morning and a music gathering at the friend's home/barn in the afternoon. We'll see how that materializes, so stay tuned, and send me a private message if you want to be included on any "guest list."

And, then, what about the ashes? They were sent to me via USPS! Butch's remains weren't cremated until he'd been dead about a month (this, due to the "wait list" for cremation, because of CoVid deaths clogging the system . . . seems that most crematoriums are not equipped with extra ovens, I guess, in case there's a pandemic). I did get a lovely box, which they call an "urn" (not appearing to be anything I'd affix that label to). I have not placed the ashes in that receptacle because it is not easy to open and close and I do want his ashes distributed according to his wishes: the foot of Superstition Mountain in Arizona, near where he grew up. I believe that activity will be taking place the last week of August. It's not planned to be a public event, but I'm not making it fully private. (Yes, I plan to keep a few ashes back, but not likely in that fancy box.) Meanwhile, his ashes, still in the shipping box and labeled "Cremated Remains," sits on my kitchen counter (I'm afraid to put them elsewhere for concern over losing them in the household chaos).

So, there you have it. Life is going on and, for those who are sensitive to such things, I believe Butch is right here with me, hopefully approving of my behaviors (binge-watching science, history, and geography related programs on Discovery +, probably more than I should, but I'm OK with that . . . at least for now).

Love, peace, & health,

Jean

Show your love and support for Lynn (Butch).

Make a donation to CaringBridge to keep Lynn (Butch)’s site up and running.

March
16
2021

March 15, 2021 - The obituary

Please view Butch's life story (in brief . . . very brief . . . form) at

http://support.pancan.org/goto/LAHibben

Other donations in his memory are welcome here at Caring Bridge (see "donate" tab/button) or any VA organizations that help those in need, of whatever kind.

These various groups have been with the family from the beginning of the journey and are ready to assist others.

Thank you for your patience for this obituary (it has not been easy to complete and needed the family's OK); feel free to include it, all or in part, for any applicable organizations. Once we decide on the final distribution of his ashes, I will update on this website as appropriate. Also, when the memorial event (service plus song circle, held at separate locations but, planned, we hope, for the same date) . . . most likely not until early 2021, as CoVid permits . . . I will provide needed information here.

 

Jean (or Mom, Grandma, Aunt, ?, as suitable)

February
6
2021

January 30, 2021 - Fair Winds and Following Seas

A very special friend told me, as she was dealing with terminal cancer and I was complaining about a cold I had, that our trials are very real and need to be endured by each person,  regardless of the challenges others are experiencing and I had every right to complain about a short cold while she was dying. That made a huge impact on me. And I totally get it . . . now. Just about everyone is dealing with an oppressive situation with CoVid and many are scared, many are worried, and, so sad but true, many are suicidal. Those issues are just as real as my current situation, dealing with my husband's passing on 29 January 2021. People have been so sweet with remarks and memories (oh, I love those memories) but often mention the CoVid condition and find themselves complaining . . . then realizing to whom they are speaking and feel uncomfortable about their complaint while my husband is dying and I can't visit him. Yet, let's face it, this is a rotten time to deal with one more issue, whatever the issue is (including having the virus). But, in some ways, it's working for me. I don't have to go in person to every other vendor or financial institution to take care of the many details: they are either closed or discouraging visitors. I have observed others dealing with some horrible stuff following a loved one's passing, yet I'm doing almost everything necessary from my home. Gratefully, Butch and I discussed this issue ad nauseum and made plans for just about any contingency so the tasks were no surprise. Yay, us! And with the restrictions on gatherings, the number of people stopping by to visit has been reduced to close to zero (with the few "drop ins" actually being planned by phone or text and have taken place with masks and social distance). To some that might seem unfortunate, but I'm rather private and quiet much of the time; I've been able to take care of me the way I choose. Yay, me!
 
Getting off my soapbox for a moment, people have expressed hopes that Butch had a peaceful passing. I guess I could say he did, but it didn't sound like it to me. He had internal issues (that were not fully diagnosed at the time of his passing, though it had been planned to be discussed at a medical personnel meeting with us, which had been scheduled, a few days earlier, for a time that turned out to be 3 hours after his death . . . we canceled the meeting, obviously). These health problems of Butch's were likely due to the pancreatic cancer metastasizing to the liver; he was vomiting bile, off and on, for about 48 hours (we did speak on the phone for few seconds during this experience) and he was terribly weak. He couldn't even hold down his medicine long enough for it to have any effect. I spoke with staff just before 8:00 am on the 29th and was told he might not last the day. 10 minutes later I got the call back that he had passed. As far as I know, he was alone for those few minutes (usually there was someone with him when he was having this type of episode). So I wasn't by his side and neither were any other family members. I have heard that some terminally ill patients prefer to wait until none of the loved ones are present before they leave this mortal life. Is that what Butch did? I don't know.  I wouldn't be surprised. Following his passing, there was a memorial march when they took his body from his room at the VA hospice wing to the morgue, appropriately accompanied by military escort (most likely a minimal escort). I was invited to attend, but declined due to the CoVid lockdown and the distance to get to the hospital.
 
I take a great deal of pleasure in the fact that, during the last few years, so much time was spent watching TV together, mostly binge watching the few things we had mutual enjoyment of. They were cherished times and even, when In the middle of them, I felt somewhat guilty about not doing something more productive. Looking back, those were some of the very best times and I am sure if I had been writing or researching or doing housework, I wouldn't be sitting here now thinking "golly, those were great times, leaving Butch by himself and writing articles and vacuuming!" So happy I knew what was really needed in the long run.
 
As most are aware, during this pandemic time, funerals and memorials are held online or in very large venues with only a few people present (to keep social distance). Yes, we could do that, but Butch and I also discussed this situation. We decided that, once travel restrictions were lifted and in-person gatherings will be sanctioned, we will be doing a memorial. I've got very clear plans for this event . . . except for the date. I expect I'll be able to set it with plenty of time to get the word out. It will involve music, you can be certain (not sure if I have enough saws for everyone, though). I don't see this happening any less than a year from now and, because of where we plan to hold the bulk of it, not during rainy times. Maybe spring 2022? We'll see.
 
Butch is eligible for an funeral/memorial with military honors and to be buried in a national cemetery, but his body will be cremated and his ashes will most likely be removed to a location in Arizona (we have discussed a couple of options and I will make the choice eventually). Unfortunately, due to CoVid, there is a backup in crematoriums and the cremation is not likely to take place for at least a week, probably 2 (maybe 3?).
 
Meanwhile, I'm going through Butch's belongings and sending some things to folks, but also donating any of his clothing that is still wearable (he did have a tendency to wear things thread-bare). But his immense collection of red socks is slated to go to a local homeless shelter, where socks are much sought-after.

People have asked to whom they can donate in Butch's name. I suggest this site, Caring Bridge (which has not charged a penny for carrying the messages to friends and family of ill individuals, creating a platform where notifications can be easily and swiftly made),  PanCAN (the pancreatic cancer organization that ties patients, caregivers, and loved ones together in a combination network and advice platform while supporting pancreatic cancer research: https://www.pancan.org/), or any US Veterans organization.

Finally, at the insistence of so many, YES I am taking care of me. I am getting rest, talking to various friends and family members (about all sorts of things), and am eating healthy meals (as well as ice cream). Got lots of things to keep me out of trouble. Truly, I am blessed . . . to have had 44 years on this earth with a most unusual and loving companion and to have many, many amazing folks in my support groups. 

"God's delays are not necessarily God's denials" - anon       Words that have kept me moving and shaking for many years. Peace and health to all.

Jean (aka Aunt Jean aka Mom aka Grandma aka ???)

December
21
2020

December 20, 2020 - 122 and Counting

Good friends, family, and sojourners with us on this journey of this chapter of our lives:

I reviewed what I wrote a couple of weeks ago and it hardly seems possible so much can happen (and not happen) in that short time. Great news: Butch was weighed at the hospital (he obviously can't stand on a scale but they have a sort of sling device he is placed in and that connects to a scale - near as I can tell, it is something like weighing a large catch by fishermen (and women). He weighed in at 122# (about 100 less than he weighed when we first met, but 6# more than he weighed when he entered hospice in October). He continues to do a good job getting his meals down, which is good since I am now forbidden to sneak food (or anything else, for that matter) in to him. Not only are those "pod" visits I mentioned in my last post now verboten, but I can't even drop off packages of Diet Caffeine free Coke, Oreos, bottled water, reading material (not that he's wanted much of that since he has books on his phone), or fresh red socks (no longer need to be matching sets of 2, of course). While this is sad (and, no, we've checked: he's not permitted to receive things sent by mail either), he is still very much in control of his cognitive functions so we talk at least once a day and usually twice, as long as I get that second call in before about 6:30pm, when he "calls it a night."

We are very pleased that Butch has been getting calls from others, particularly, on a regular basis, with a dear friend of ours in Indiana. I remember the days when I would wait until after 7pm to call my folks in Illinois... The long distance rates were lower then. But these days, audio and video calls can be made with no need to watch the clock to be sure the conversation isn't too expensive. If anyone reading this would like to call him, he uses his cell phone and the number is 951-322-5977 (please don't call after 6:30pm, PST...see prior remarks about that). And, since his phone doubles as an Internet access device (as well as library, phone, and camera), he does get texts (at number just given) and emails - at sawphist@gmail.com. He may not answer or respond quickly, but he does enjoy hearing from friends and family. 

Shortly after my last post, he was given a power wheelchair. He says it's great, but there's really nowhere to go. He did get outside one day about a week ago and enjoyed getting fresh air, but there are so many caveats that I think it's proved more hassle than it's worth, especially since the patients are discouraged from mingling with each other (CoVid is a constant concern). He did tell me tonight that it's estimated he'll be receiving the vaccine in a couple of weeks (have to inoculate the staff, first, of course). I still don't think they'll let us have an in-person visit until after the new year.

On the homefront, I am keeping on keeping on. I keep busy with my genealogy work and business and have done a number of webinars this past year, with more scheduled for the months ahead. With my Genealogy Journeys business partner, I'm going to be giving some classes in the subject this coming January.

I finally got the oil changed in our "new" used car we purchased Dec 2, 2019. We got a year of free oil changes with the deal, but I still had not driven enough to constitute an oil change need... But I figured, on Dec 3, I'd better cash in on the deal and, even though I was a day late, they honored the bargain.

I admit that my anxiety level is higher than it has been, since California has gone into another lockdown.... I've gone back to having groceries brought out to the car instead of going into stores. The CoVid case count has soared out of sight and I look at people as potential contagion carriers. Better be safe than sorry. Through much of my life in the last couple of decades I've avoided shaking hands, using other's pens, and touching buttons or light switches with fingers (always use my knuckle). The last time I flew I really wanted to wear a mask, but didn't (self-conscious, I guess... That won't happen again!). Now it's almost a fashion statement! And I'm just fine with it. I've carried hand sanitizer in my pocket for years... Seems I'm now in good company. While I've used fist bumps or elbow touches for greetings for many years, I'm thinking the bowing behaviors of some cultures may be even better. It's nice not to be teased for my germ phobia... But, then, I'm not really in the company of people with whom I might shake hands, these days. They call it the "new normal"... But this has been my normal for decades so I guess adaptation is coming easily to me.

The holidays are upon us and I am enjoying the cards and greetings, and will pass them to Butch to enjoy when I'm permitted to do that again. I haven't sent out formal Christmas greetings in over a half century, but here I will wish, on an informal basis, Merry Christmas and Happy New Year to all. Thank you for traveling with us, in one way or another, on this journey.

Love and Peace,
Jean

December
3
2020

December 03, 2020 - The more things change, the more they stay the same

I am not ignoring my scribe duty, when it comes to keeping everyone in the proverbial loop, there just has not been much to report. Butch is still very much alive, which is good to report, and only in the last week or so has there been any news. Such as it is, I shall bring everyone up to speed.

Butch remains in hospice at the VA where he is being treated very well. There are an estimated 150 patients in that part of the facility and the staff is minimal (not surprising, as many medical services are experiencing higher rates of CoVid positive cases and tests, reducing available personnel). Once upon a time the hospitals would let family members come and assist with their loved ones whose care did not require an experienced professional, but with the virus in renewed full swing, family members (and friends... And strangers- ie, volunteers) aren't permitted to visit inside (tho I have been informed that I will be notified if he slides downhill with only hours left, so I can come to say goodbye).

However, that said, it does appear as if the VA recognizes the value of family and in-person connections in whole body health care. They have "installed" what they call "love pods" - small areas (hardly podlike and with a no-touch rule) where up to 3 loved ones (properly screened and registered in advance) can meet with the patient... Separated by a plexiglass position that removes all hope of people conversing (especially since masks must be worn, in spite of the barrier separating people). There are 3 or 4 of these stations (I can't get comfortable with the moniker "love pods") in a courtyard area and the patient is brought down for a maximum of 45 minutes, twice a week, if desired. When I went to see him last week, I brought him some of the things he requested (which had to be sanitized before delivery). I was also grilled with the regular questions, had my temp taken, requested to sanitize my hands (even though I was not to touch the inmate), and given a clean, never before been used (so they said) mask (instead of the nicely color-coordinated one I was wearing) before I was escorted into the pod area. The most frustrating (after the difficulty hearing him, even with my hearing aids on) was to see him being brought out in his wheelchair maybe 30 feet from me, sans partition, but forbidden to run to him and give/get a hug. Same feeling of frustration after the visit...we were in the same hallway but couldn't get near each other.

As frustrating as some of that visit was, it was still great to get to visit. Next time we will use the walkie talkie app on our phones and converse that way. I know it's hard on him getting into the wheelchair and then, when he gets back to his room, getting back into the bed... In fact, I could see him fading about 30 minutes into the visit (besides the difficulty of manipulating the transfers, he got tired having to practically shout for me to hear him). I signaled the nurse to take our picture (which she was so kind to do, and not even with gloves on or sanitizing my phone/camera) and then to end the interaction. She said we still had time, but I mentioned that he was done visiting and the exhaustion of the patient trumped my desire to keep the visit going for some time yet.

Now, some health info: Butch's left foot has been infected and he is now on a strict regimen of antibiotics and daily dressing change. He says the sore is no longer an angry red and the pain has lessened some. This is good...I don't think he could handle another amputation.

Butch's appetite is improving greatly and, as far as I know or can tell, his weight never dropped below 100... Tho it certainly was looking like a possibility for awhile there.

Best news last: he got the power chair they ordered for him! He is very excited to have that kind of mobility and promised to come out in said chair for our pod visit tomorrow (Friday, Dec 4). I'll try to get another photo then. 

In case I don't add more in the next few weeks, we wish everyone a Merry Christmas and pray that y'all will stay healthy.

Jean, the scribe

November
10
2020

November 10, 2020 - we continue to hold our own (with much appreciated help, of course)

Did we have a life before all this? Sometimes it's hard to remember or to admit that the last time Butch and I played music together was at the Glendale, AZ Folk and Heritage Festival, 29 Feb-1 Mar this year. That doesn't mean we have been without music, just haven't played it together.

We have both been touched and saddened by the recent passing of Alex Trebek... We have spent much time, as have so many others, playing Jeopardy along with the show's contestants. I think we continued to be amazed with each other's knowledge of various categories, even after over 40 years together. These occasionally made the basis for telling each other stories of our experiences before we connected with each other ("How did you KNOW that?"). Hard to believe there were still things we hadn't disclosed to each other. I'm pleased that many of our discussions ended up recorded on my smart phone when Butch would start telling yet another story (even if I HAD heard it) so they would be retained for his children and grandchildren. I'm sorry I didn't start doing it earlier in our relationship or turn on the recording device more often (this provides a lesson for most who are reading this... Don't let precious time go by without getting your own or your loved one's stories recorded in some form; it's easier than ever and, even if your cell phone isn't "smart," most cell phones have recording options).

Butch has been settling in at the hospice in the VA facility and I continue to be barred from visiting. However, I can still deliver items for him, just have to pass them off to others for delivery. Yes, it's frustrating. No, I don't hold any grudges about it. I keep in mind that for many months of Butch's illness, we spent hours together watching TV (like Jeopardy), discussing all sorts of things, and just enjoying each other's company, even tho he wasn't really up to playing music. I won't say that it was enough... I could have used more in-person time, but we do talk at least twice a day by phone (not doing much face time). I think we are careful to say all that needs saying before we hang up.

So while he has been in his new digs (he has a private room, no less), they have changed out his mattress to an air one that will lessen the chance of bed sores (while he can sit up, it takes a lot of energy and does include some pain... And taking pain meds has always been avoided by him, so most time is spent in the bed where he is more comfortable). 

I followed his request to get him his saw (his oncologist wanted to try a clarinet and saw duet... Glad I can't get in on that!). Well, I got the saw as far as the hospital door, then it took 3 different people and a call to a fourth before they said they'd take it to his ward. That's as far as it got. The woman in charge of the ward (I'm calling her the "warden," since the label seems to fit in many ways) said "not on my watch" and locked up the "instrument." In the past, we have gone thru lots of checks and counter checks with a saw: twice on cruise ships and once on an airplane, among others; we know that not everyone looks at a saw as being an instrument. It fits the description of a weapon (forbidden in the VA hospital) and, considering Butch's current abilities, letting him have such an "instrument of destruction" could prove dangerous... Why, he could go running (on one leg) thru the halls of the hospital, sawing people and medical equipment into tiny pieces (did I mention that this is a hand saw, not a power or chain saw?). Sigh. So Kevin or I will be picking up said saw in the next few days, to put it safely back in the garage or house where no one can get hurt by the evil item.

I think the oncologist was hoping Butch would have something to divert his attention from his situation. One form of discomfort, along with an interruption in communication, is fluid in the ear. They put a tube in his ear and he's doing much better and no longer has to pretend he hears me. They also provided him with a hearing aid (not the traditional type, but a device to amplify what he is hearing) ... They are planning to fit him with new hearing aids soon.

He's had discussions with various medical professionals about his lack of leg, and at first they said there was nothing that they would/could provide him in its stead (no prosthetic, beyond the slide board Kevin made for him to enable him to move from bed to wheelchair and back)... Then yesterday he was taken to another facility and given a lesson and test in electric wheelchair use. He passed. Not sure when he will get the much coveted wheelchair, but it will certainly help him want to get out of that bed, pain and exhaustion be damned! The warden may regret letting him have such mobility! (Can you picture him, had he been permitted to keep the saw, zipping around the ward on the chair, weilding his "weapon" and threatening staff and patients?)

Meanwhile, back at the ranch, I am keeping the home fires burning (double cliche... Should give me extra points). Actually, as horrible as California fires have been this year, if anything, I should be more concerned about putting them out!

Butch does get phone calls and emails and sometimes even responds. The various well-wishes I have received for him are delivered to him every couple of weeks, so thank you. And he does get on Facebook a time or two each day. To communicate with him directly, his cell is 951-322-5977 and email is sawphist@gmail.com.

Staying "CoVid free" here and hoping those reading this are the same.

Jean
(aka Mom, Grandma, Aunt...)

October
23
2020

October 23, 2020 - A new phase

I do believe that my last entry involved Butch being hospitalized due to an infection, and the decision for him to stay in long-term care, while there was aggressive treatment to get rid of the problem. It was determined that his problem involved liver and possibly gall bladder. After some tests (sonogram, CT scan, frequent blood checks), it was finally determined that the problem was not an infection, per se. The oncology team concluded that Butch's problem is that the cancer metastasized from pancreas to the liver. The only way to know for sure is invasive and Butch's strength and heart are not good enough for him to survive the biopsy. No chemo or radiation is recommended, due to his weak heart, primarily. In doing research, I can see that his symptoms match liver cancer. So a couple of days ago he was removed from the antibiotic IV and moved to hospice, also at the VA hospital. After many in-depth personal discussions, as well as conferences with the various doctors and medical professionals in the different departments involved in his care, it has been decided that he will be staying there and not returning home (unless everyone is surprised by some sort of miraculous happenstance in Butch's 82-year-old body). (The prognosis: 6-12 months.)

Of course, all this occurred a day or two before I obtained new supplies for his sick room here at the house. Oh, well . . . I'm sure I can find uses for the bed pads and other items that I now have in abundance. Meanwhile, friend Kevin is helping Butch by creating a transfer device to help him move from bed to commode or wheelchair, taking various desired items to him (including his mail-in ballot), and assisting with minor repairs, etc., around the property. He may also get a power wheelchair (not scooter) for use in the facility and a type of prosthesis to help him with some mobility, however minimal.

Since he has been off the IV antibiotics, Butch has been getting his appetite back and is actually consuming measurable food. Surprisingly, to those who know him well, he is drinking little, if any, soda (yes, I have a large stockpile of diet caffeine-free Coke, some of which I will be taking to him - I can drop things off, but, because of CoVid, can't personally give them to him). He says things don't taste good or right . . . food with salt is too salty and, hard to believe this from him, sweet foods are too sweet. No more chocolate layer cake! But today his doctor told me that he is off insulin as his blood/sugar is at a good level and is manageable with his food. Speaking of food, his oncologist told him, and me, that Butch no longer has any dietary restrictions: he should eat whatever he wants (sort of a bribe, I guess, to get him to take any nourishment, however miniscule)! Of course, since he doesn't really want anything, that allowance is not as welcome as it would have been just 6 months ago!


Butch and I did not expect to have this many years years together (44+), partly due to his tendency to engage in some less-than-safe activities, as well as his health issues. At this point, we are thankful for having had so much time together. We talk on the phone at least twice a day, I have access to his health professionals to ask questions, we started a couple of years ago to move various things (contracts, ownership of various items, accounts, etc.) into my name alone, I have his complete power of attorney to handle necessary details, and there are many wonderful people who have made themselves available to help in many ways. We may be in a pandemic, but we have been blessed over and over. 

I will continue to update this website as there are things to report. As I've said before, thank you for being in our circle of friends, family, and colleagues. We wish everyone health and safety and we move into the last months of the year.

Jean

October
4
2020

October 4, 2020 - Staying in the Loop?

For those who believe in Cosmic String Theory, you’ll understand this thought: I am attempting to keep everyone in the loop but it seems that the loop is doubling back on itself and has taken an unusual shape (I’m thinking: ∞ - It sometimes feels as if this situation will go on indefinitely).

 I had wanted to write sooner to bring everyone up to date, once Butch’s situation has stabilized; but that has proven impossible (i.e.: it will never be stable). So, going back to about Sept. 14, life became very unpredictable, beginning with a blood-vomiting event. One great thing: all CoVid19 tests have come back negative! At least, with all that’s come up wrong with Butch’s health, that one element has stayed constant and relieving. Things listed below are not necessarily in the order they were experienced (all mentions of “they” and “them” are referencing medical staff of various types).

 Tests Butch has had since I last wrote:

  • CT scans, not sure how many (to learn why he was vomiting blood and to check on status of pancreas tumor – no notable changes)
  • Sonograms (for gut, arms, heart, and others – he insisted he had a mammogram, but that’s one area he’s not experiencing problems with so I suspect he mixed it up with one of the sonograms)
  • Electrocardiogram (to assess heart situation – he had a “mild” heart attack that did significant damage to the heart; how something “mild” can result in something “significant” is beyond me
  • Heart x-ray (see above)
  • Blood tests (so many that they had to give him 3 units of blood (OK, some was due to his internal bleeding – causing the blood vomiting; thought source of bleed was uncertain)
  • Upper GI (discovered 2 stomach ulcers, but neither “bleeding”)
  • Minimal PT due to his weakness and oxygen issues (he had an oxygen tube stuck in his nose till after his surgery – see below – but it was removed after he got back to his room – well, he removed it and they determined he didn’t need it anymore)

 These tests, of course, have led to various procedures and additional needs:

  • Besides the blood, he was given magnesium (a substance that is often a problem for him – hard to get enough, in spite of my giving him various food/drink items that are so heavy with magnesium I can barely lift them)
  • Stent replacement of the one that was initially placed in the bile duct so long ago (it is surmised that the slippage of the first one is what caused the bleeding)
  • Colonoscopy (to check for another possible source of bleeding – found pre-cancerous polyp, initially thought to need removal, then the doc said that he was too weak, plus it wouldn’t be problematic for probably more years than he has left anyway; nothing bleeding – yay!)

And said tests revealed/resulted in the following (some repetition of above items):

  • Blood infection (received antibiotics via IV to clear it, which it did)
  • 2 stomach ulcers (noted above)
  • Oxygen deprivation (plummets when he stands, but, hey, he’s got just the one leg)
  • Weakness (yeah, wouldn’t you after all those tests?)

“What else could there be?” you ask. Well, read on:

  • Blood clot in arm (causing the arm to balloon . . . first time his arms have had any substance in the last few years; treated with blood thinner and quickly resolved – and dissolved, I guess)
  • Taking him OFF blood thinners to lessen chance for more internal bleeding, wherever it may be (this with the blessing of his cardiologist, who said that the medication has done its duty and is no longer a life-saving medication for him, though he is to stay on the aspirin regimen)
  • Temperature spike to 104° F and then major temperature fluctuation (causing them to put him in isolation, suspecting CoVid – it wasn’t, it was the symptom of the blood infection, see above)
  • Small heart attack (exact time unknown, but probably while he was in the hospital – they probably told him when it happened, but that wasn’t conveyed to me)
  • Grumpiness from being on a liquid diet until the various issues could be determined and/or resolved
  • Enlarged lymph nodes in area of the tumor in the pancreas (re-evaluation planned for 3 months hence; not expected to be cancerous and since he’s on blood thinners, the invasive biopsy procedure could be more dangerous than letting them alone)
  • Decision about releasing him went back and forth, but he was eventually “sprung” after 2 weeks

BUT WAIT! There’s more!

So he was home for 4½ days with me being the dutiful and doting wife (OK, I’m exaggerating, but I now know why I never gravitated to nursing as an occupation . . . my supreme respect goes to those men and women who endure so much: obnoxious and unsympathetic patients, smells that are exceedingly offensive – I found a fabulous product – Neutroline – that permits me to handle the sources of those odors with minimal gag reflex, preparation of meals as requested that end up “going to the dogs” – literally, around here at least). After a great deal of time and ordering, sometimes on an almost emergency basis, I have a multitude of supplies that I did not have on hand but now have in excess, Butch’s temperature skyrocketed, going to 101.7, then 100.9, then to 102.7, at which point we loaded him in the car (actually, Kevin loaded him and I just ran ahead to open doors) and it was back to the ER. His blood (pressure and sugar) had been bouncing all over the scale for much of the past month and he was truly delirious (he told me today that he remembers nothing of the decision to take him to hospital . . . he had stated over and over that he didn’t want to go, but what can you say when a burly guy picks you up and hauls you off?). I had tried to get a reading on the blood situation, but that didn’t happen. When we got to the hospital his BP was OK (shock of shocks) but his heartbeat was very fast. That was all yesterday. Today I learned the following:

  • He had another heart “episode” at 3 this morning
  • They determined he has an infection in his liver
  • His temperature was brought down (though he was put into isolation in case it was CoVid, so they did another test; like the one yesterday, it was negative)
  • It has been essentially decided that he won’t be released to home this time, at least not in his weakened state – they will be moving him “downstairs” and he’ll be on a long-term stay status until he really can stand, move himself onto commode and wheelchair, etc. (we are both OK with that as I discovered I’m really not well-equipped enough to handle his care – my asthma gave me a couple of scary moments when I was feeling overwhelmed; and my strength and physical abilities – no thanks to an ornery sciatic nerve and 2 knees that should have been replaced a decade ago, don’t ask – are not conducive to doing the tasks a caregiver needs to do)

Sounds like no laughter in those last weeks, huh? You should know us better than that! At least 3 incidents come to mind:

1.    Butch told me that while he was hospitalized in September, and when his fever spiked, he was moved in the middle of the night. People came in wearing haz-mat suits and took him away to isolation (fearing CoVid). He didn’t exactly remember that, but when he woke up in isolation, he had no idea where he was and since he’d had a weird “dream” of being kidnapped by other-worldly beings, he didn’t know if he wanted to find out. He was well-cared-for, of course, and brought back to reality by the health care staff. Then he called me. Glad he didn’t call before he learned the actual reason behind the move. He was back in his own room within about 24 hours.

2.   When Kevin and I got him into the car yesterday (10/3 – and, for once, it was before lunch instead of the middle of the night or before dinner, with me not getting to eat for hours), he didn’t want to go, but of course had no say in the matter. Once we got to the VA (yes, I was allowed to stay with him, at least while he was in emergency), they got his fever down and he was able to recognize that he was in hospital, but didn’t know where. He asked me where he was and I told him about evacuating him to a safe place and he just shook his head . . . he really hates to feel “out of it”).

3.    When Kevin and I got Butch into the car, Kevin loaded him in and I moved the wheelchair out of the way, then ran into the house to get Butch’s VA identification and other needed items (like his phone, cables, and charger). I ran back to the car and we were off. This morning I decided to bring the wheelchair in from the front porch, where I assumed Kevin had put it. It wasn’t there or anywhere to be found. I texted Kevin to find out if he had maybe removed it to another area where it would not be seen and, possibly, stolen. He said I’d taken it. I looked all over again, but it really was nowhere, so Kevin said he’d look around. I had no idea where he planned to look, but I soon got a text that he found it. He called later and explained that when I pushed the chair out of the way so he could get Butch into the car, the chair (without brake on) just went visiting. Kevin said I may have forgotten I live on a hill (oops, guess I did at that moment). Said chair went down the driveway and then meandered down the street. Kevin found it, still upright and at the side of the road, waiting to be collected, which he did. So much for me being able to boast about my level-headedness during all of this!!

 We continue to be grateful for the kindness of friends and family, the many uplifting cards sent to both of us, along with the same in the form of texts, emails, and private messages. And as the pandemic looks as if it’s sticking around for at least the rest of this year, I continued to be thankful that my meetings, festivals, concerts, and conferences are all being brought into my home by way of technology. So the thing that makes so many frustrated and depressed is saving my sanity! I don’t believe in coincidences.

 And so I’m going to post this before it gets any longer (due to more exciting new events that surely await us). Hoping everyone is staying well.

Jean