Journal

Journal entry by Jean Hibben

Reports of our last week


Like everyone reading this, we have spent most of our time sequestered with food, books, TV, snacks, smart phones, lots of hand sanitizer, disinfectant sprays, Ice cream, sanitizing wipes, well-stocked soap dispensers, good meals, a spray bottle of alcohol to treat all mail and packages before they even come into the house, amazingly effective and washable face masks with pm 2.5 filters, surgical gloves (at least 2 large boxes), well-balanced meals, etc. (Please note: our supplies are not the result of hoarding: masks we got when So. Calif. was so devastated by fires and we wanted to be prepared; the gloves and other sanitation items have been collected as we’ve dealt with Butch’s health issues, and many have just been sent to us by the Veterans Admin.)


We aren’t always in the same room . . . Butch enjoys all those old Hallmark Christmas shows (the ones with the same plot over and over) and watches them in the living room while he treats his leg with a machine that increases the circulation to his foot. I hang out in another room, watching old westerns. Oh, and did I mention, we have plenty of snacks to keep us from starving? Yes, got some projects to attend to . . . I must finish cleaning up the office and front porch, and about every other room! The living room is still our hospital room, as far as equipment goes. Nearly every visit to the VA hospital means the acquisition of more supplies. So when I say we are sequestered, I forgot to include the other items: gauze, more gauze, medications, creams, medicated pads, scissors, more gauze, tape, other tape, different tape, alcohol wipes (those tiny, individually wrapped squares – a few thousand of those – he gets them with his diabetic supplies, his wound care, and everything else). They come in handy for disinfecting smart phones, dumb phones, house phones, tablets, computers . . . as long as the alcohol is no more that 70%, they work great. Well, enough of that . . . I’m sure we all have stories of the videos we’ve watched, the Words with Friends and other games we’ve played with similarly isolated folks, Skype or Zoom calls & meetings, news reports, and medical personnel warnings that remind us that this is a time of new things and behaviors (that last changing frequently, along with the information of how many more have been affected by this siege).


VA Visit, 1 April 2020 – Podiatry & Oncology


There was an attempt by the VA to cancel Butch’s appointment with podiatry because that hospital, like most, is working hard to minimize the number of people coming in and out and reducing the appointments to emergencies or necessities only. The problem: while the initial amputation of the big toe was successful and, after over a year, finally healed completely, during that process a lot of pressure was placed on the second toe of the same foot and its appearance was more than disturbing. It was evident to both of us that the second toe would have to be removed, so the podiatry dept. kept Butch’s appointment on the books and his regular doctor there, Dr. Williams, said that the third toe is also looking pretty bad and will most likely need to be removed as well. He said that the BTK (Below The Knee) amputation of Butch’s right leg is not off the table, though we are skeptical about his surviving that, because of his other conditions. Butch has an appointment with the vascular surgery folks in a couple of weeks, after he gets a CT scan of the leg so it can be analyzed, and they will dictate, along with Butch’s cardiologist & pulmonary specialist, just what the next step will be. The best news is that his labs (blood tests – which he gets every time he goes to the VA for a chemo treatment) show no signs of infection and his white count is good. This is very welcome news since his body just cannot handle antibiotics very well.


From podiatry, he went to oncology where he was given another chemo infusion. He is now on two meds for the process, but he is not so comfortable with the second one they have added and he will be discussing side effects when he sees his oncologist (and, later, cardiologist) next. Everyone in the oncology building knows him now and this time he was greeted at the door for double checking his temperature (the automatic process when anyone enters the hospital, where, if they pass and have a mask, they get a “permission to enter” tag). I did not accompany him on this journey to the VA so I don’t know if they would have allowed me in, but Butch said there were a number of caregivers there and that they were permitted, so I expect to be with him next time, in 2 weeks (unless rules change again).


After the chemo, he had enough energy to drive (a good thing, since I wasn’t with him) and stopped for  a lunch (when he gets his infusion, they always give him a sandwich and some other things for lunch, but this time they had run out, so he was pretty hungry when he finally left). While I am pleased that he is able to drive to these appointments, I get a bit nervous, concerned that he might be too tired. I needn’t have been – he still had energy when he got home and was able to assist in a few tasks around the house then and the next day. Sometimes it actually takes a few days for the exhaustion to catch up to him.


VA Visit, 3 April 2020 - ENT


Back a couple of weeks before Christmas in 2018, Butch was working on installation of some lights and took a fall off the ladder, sort of ending up with his head in the fireplace, knocking the glass protective doors off their track and putting a gash in his head. I really didn’t think much about it, even though I assist him with his hair “cutting” fairly regularly. It never occurred to me that the scab on his head was still there from the December 2018 event. We all know that a non-healing wound is something that should be examined by a specialist, on the off chance that it is cancerous. At the VA (I guess because the damage was on his head) that means a visit to the Ear/Nose/Throat specialist and that appointment was finally achieved today, Friday. A sample of the tissue was taken for evaluation, and an appointment with a dermatologist was arranged (next week). Meanwhile, we await diagnosis but are already thinking it is likely to be malignant. More adventures await, I guess, and now I am assisting in bandaging both ends of the guy.


Me – the Caregiver & author of this lengthy discourse


While I am still dealing with my sciatic nerve pain, and I have not yet got “official” assignment to my new “primary care physician” (following the chaos explained back in early March), I am feeling a bit at loose ends. I keep hearing the phrase “If you experience CoVID19 symptoms, contact your primary care physician” . . . yeah, easy for them to say! But I’ve been symptom free and working hard to stay that way, as is Butch. My asthma symptoms are pretty much under control and other health issues are not of an emergency nature (at least as far as health care systems are concerned – interesting how these things are evaluated). 


Now, my latest “concern” is that my Drivers License renewal appointment is for May 5 (license expires on the 25th when I will turn 69). In Calif., there is a deferment for those 70 and over, giving them another 3 months to renew licenses expiring during this pandemic period (they want the old folks, especially the ones in vulnerable condition, to have extra time). Because I haven’t been in for awhile and do need to take the eye test, I’m sure, I must renew in person, in spite of a spotless driving record. I talked to a DMV rep about being 1 year shy of the deferment age, but with asthma (breathing issues and poor immune system) to see if I could qualify for the 3 month extension. Nope. (I would guess I could get it if I was to be insistent or nasty, but it would surely mean an hour+ wait on the phone so I figured I’ll just borrow a hazmat suit and go in on the 5th of next month. I think it will make a rather unusual driver’s license photo!

 

Finally:


I suspect all who are reading this are aware that rules and interpretations of them change almost daily and are also interpreted differently at the various clinics and healthcare facilities. The latest trip Butch took to the VA included his wearing gloves. But he was told to throw them away – his hands were actually cleaner than gloves (this makes sense since we are all washing our hands so often but pretty much ignore that behavior if wearing gloves). But each visit brings new revelations, so I’ll update on the latest as we discover the most “current” info.


Sincere thanks to those who have included us in your prayers and kind thoughts. Also, we appreciate the emails, texts, private messages, Facebook posts, and phone calls expressing concern over us and our safety, supplies, food, etc. We have gratefully accepted offers from folks to pick up a thing or two from a store, though usually we get the basics on the way back from the VA (the trips we continue to need to make, as mentioned above). We are trying, as all are, to keep life as normal as possible, but we have no idea what “normal” means. I guess none of us does.

Peace,
Jean, the tired

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Journal entry by Jean Hibben

A day late, but happy St Paddy's Day. I know a lot of fun places to spend that holiday have been closed but, as any person with Irish ancestry will tell you, it's never a wrong day to celebrate the Irish culture.

So, after some visits to the VA, let me update some of the progress as well as some of the apparent digressions involving both Butch and me, healthwise.

General Health

Butch saw his primary care physician on Monday. I stayed home, taking care of some other things, including getting wheels rolling to sign up with a new primary care physician for us both (even tho he uses the VA, if Butch experiences an emergency, things work much faster if he has civilian coverage as opposed to cutting thru the red tape of getting reimbursement from the VA). Why a new civilian physician? Please see earlier post about our physician of 23 years and his encounter with the DEA.

Butch's VA physician has set in motion a consultation with a specialist to attend to a wound on his head that has been there for over a year and, while not really changing, it hasn't gotten any better. That appointment is scheduled for the beginning of April.

For those unfamiliar with the VA, they are still operating but asking that people not come to visit patients and only the most necessary of visits and procedures be scheduled. Of course, in some cases, it's hard to know if a new illness or wound requires immediate attention or not so, due to Butch's fragile health, we are scheduling according to the recommendations of the medical professionals. Other appointments may be handled via phone or Skype or other electronic method (the pharmacist appointment, originally planned for today, has been cancelled with plans to reschedule over the phone - the pharmacist is primarily concerned with drug side effects and interactions, and his insulin needs and regulation; none of this requires face-to-face).

Oncology

Butch had another chemo treatment today and came walking out with almost a bounce in his step. While a bit tired, he drove home and has not yet "gone down for a nap." 

Podiatry

Today also included a visit to the podiatrist. It seems rather clear that Butch's second toe (next to the one that was removed) on the right foot will eventually have to be amputated. Is this considered elective surgery or an issue requiring immediate attention? Since there is no infection in the bone, it appears that it is being treated as non emergency (at this time). In fact, his next podiatry visit won't be until 2 weeks (instead of one) from today. Of course, we got additional bandaging items and instructions for treatment of some new areas that will require additional attention to keep them from getting worse. So he is banned from getting full use out of his walk in tub and continues to wear those lovely "sandal" style, Frankenstein monster-like orthopedic shoes (he got a new pair last week... He'd actually worn out his first pair).

Blood condition

Butch had blood test on Monday (he has to have one prior to every chemo treatment so they can administer his medication accordingly). This test did double duty, also showing the possibility of infection, something very likely considering the foot problem that has plagued him. I am thrilled to report that he has not shown any infection. This is wonderful as he has drug interaction problems if he takes antibiotics in pill form.

Caregiver condition

Just to make life interesting, I managed to throw my pelvis out of alignment and ended up with the sciatic nerve in my left side in extreme pain. Gratefully, one of my closest friends is a physical therapist who happened to be visiting me right after I did this damage. She gave me some treatment and exercises (yes, I'm doing them, and they really help), but I still rely on a cane, even just around the house. How did I do it, you ask? I had a couple of dental procedures about two days before the hip pain became noticeable. Thinking back on what on Earth I'd done to deserve this, I remembered playing musical dental chairs as the different procedures required separate rooms. In and out of those uniquely formed chairs is less than simple, plus I was rather tense during the crown placement and that couldn't have helped. My PT gave me some helpful instructions for "next time." Meanwhile, of the two of us, Butch is more ambulatory than I.

CoVid19 and us

Obviously, this has got to be one of the worst times to have our health issues. We both fall in that "over 65 with compromised immune systems" group that makes us extra vulnerable. At the VA, to enter any of the buildings, one must have a temperature read (I was told mine was perfect... It's so good to hear something is perfect in my life) and answer basic health questions. Then we get a special sticker, good for the one day only, allowing us entrance into any buildings in the complex. Beginning tomorrow, staff members will no longer be permitted thru the front door (I was told it will lessen the risk to patients that way... Not completely sure how, but they may have a more invasive testing before being allowed to interact with the patients). Throughout the hospital there are stations on the walls including automatic sanitizer dispenser, surgical gloves, face makes, and facial tissue (that's not new, but they are being monitored more carefully for refilling as needed).

Many have asked how we are doing. We get our meals via Schwan, so that's delivered to the door. Since I've already bought toilet paper by the case, we should be good for at least a month. As for hand sanitizer, let's just say we could fill that walk in tub with what I have acquired over the past couple of years (not hoarding, just being given whenever I've presented at a conference, plus ordered for some church and DAR projects, but way over ordering!). We run out for milk and bread, but that's about it. Butch's meds are sent from the VA and mine were filled for 3 months, for the most part. We're good.

Thank you for your prayers, well wishes, and caring. When we see what some others are dealing with, I have no real complaints.

Journal entry by Jean Hibben

Title this Sort of "Duck, duck, goose"... Could use a lot more ducks, but geese rule (see photo of geese at the VA hospital). It's been a series of ups and downs, but has it ever been otherwise? So below are the discussions of our medical experiences over the time between the last posting and this latest one, mostly dealing with yesterday, the 4th of March.




Meeting with Palliative Care 




This took place the end of Feb and the doctor went through how Butch is doing since he's been taking chemo treatments over the last couple of months. As already mentioned here, Butch's reactions to the chemical have been minimal. We thought they'd increased the dosage or added a new chemical last time, but the change occurred this week (more on that later). The doc is interested in all the aspects of the lives both of us are living and her main recommendation deals with nutrition. Even though we have been using Schwann products for meals, there is a minimum of vegetables and we both need to fix that.




Otherwise, there was not much to report on that visit and that same day he had chemo (same low dose). (More on that later.) It was a good visit, classified as a duck.




Oncology Appointment, Dr. Hardin




One of the things I like about the health professionals at the VA is their tendency to take time and find out about our lives (mine too.. They are committed to having the caregiver stay healthy and sane). Dr. Hardin encourages Butch to do things, but not overdo. There's a fine line there. Butch's weight has been increasing (remember, he had lost almost half his weight but currently he is up to 155# yesterday)... encouragement, following a long period of about a 50# loss, showing his lack of nutrition, perhaps... The weight gain is definitely a duck (not from eating duck, but sticking with my child's game analogy). For the upcoming infusion, Dr Hardin planned that chemical increase.




Chemo treatments




Yesterday's treatment was extra long (more product going into the body = more time, since each infusion is delivered separately). I slept in the car. He reported slightly greater fatigue, but no noticeable change in nausea and he drove home. We will label this another duck.




Podiatry apptmt with Dr Williams




Over the past weeks, tho his toe space has healed, Butch's next toe in line (the piggie that stayed home) has been swelling and required some attention (Duck) ...  he received that with plans to double check the pulmonary status, but a cancellation of the order for "real" shoes (goose). He will likely have an x-ray next week to check that blood flow. Meanwhile, he received a new style bandage and orders to discontinue enjoyment of his walk-in tub (classification: definite goose). He did get new "sandal" style "Frankenstein monster") shoes since he has pretty much worn out the ones he got about a year ago (duck).




Caregiver report




I believe I have mentioned previously or in private messages that my care has been wonderful, with my doctor being on top of Butch's circumstances and how that is reflected in my own mental and physical well-being. The asthma that is connected to my stress level. I am still using my inhaler (doc gave me a year's worth of refills, and the same for my other meds - unusual for him to do but considered a duck). But that was quickly clarified.




Definite goose: what no one wants is to wake up to is the morning news showing your own doctor's mug shot. I have been leaning on this man for 23 years and he has been the most caring and concerned doctor. I'm not going to list all the ways he has been on my side and my total care, even during a short time when I had no insurance... He just didn't charge me and gave me at least a month's supply of needed medication, coupons for other meds, and research to find alternative drugs when something had a prohibitive cost. He stayed on top of all my innoculations and regular lab work and tests (mammograms, eye exams, etc.). Well, seems he's had a sideline and I'll include here a link to the news story. Suffice to say that a new doctor is in my future (already have the info on that).



<https://www.newsbreak.com/california/riverside/news/0OGM47Z2/riverside-doctor-arrested-on-gun-drug-charges-after-allegedly-seeing-patients-while-under-the-influence>




Handling pandemic circumstances




We haven't changed much in our regular routine: staying away from concerts, conferences, church services, etc. (Wherever large crowds are congregated in areas with poor circulation...we did attend an outside music festival last weekend; minimal risk: there were very few tight, germ-sharing experiences...see photo for Butch's method of getting around.) We continue to use the fist or elbow bump instead of shaking hands (our norm for a couple of years now)... Haven't felt a firm handshake in many months. Use knuckle to push elevator buttons and turn lights on/off. I have not used pens belonging to others for ages (always carry my own, esp in doctor offices and pharmacies). And we continue to request not having an audience that includes anyone who is ill, was ill recently, been exposed to someone who is ill, or feels an illness coming on, etc. Of course, with the threat of the Coronavirus, many are now following suit (I'll take credit as a trend-setter). I carry (and use) hand sanitizer, wash hands so often my skin feels as if it will surely wash off too, and carry a face mask (one of those exotic kinds with a ventilation hole that includes a filter). Paranoid? Maybe... Rather be paranoid and alive than be reckless and dead. Since my immune system is compromised by my own health circumstances and Butch's is negatively affected due to the chemo, we are focusing on both maintaining health (if I catch something, I can't effectively take care of him and he would probably get it from me and, due to his weak heart, diabetes, and cancer, death would very likely be the result).




As always, thank you for prayers, positive thoughts, and encouragement.

Journal entry by Jean Hibben

There is not really much to add with this posting. Butch has "graduated" to a slightly more concentrated chemo "cocktail" and has really not noticed anything major in the switch. It seemed to make him more lethargic, but he was doing a lot of tasks with our recently acquired motorhome and I know that those physical exertion experiences can have repercussions he does not notice for 24 or more hours. It is difficult to determine what comes from what. 

He has worked with the pharmacist to adjust his insulin doses and continues to be all over the place, but he continues to stay within the desires limits (please don't ask me what they are . . . I'm trying to learn it all, but am quick to admit that much is Greek - or Latin - to me). 

We continue with our plans to attend a folk festival in Arizona, leaving this Friday, the 28th. The tenants, who are truly godsends, are taking care of the dogs so we aren't having to add "care and feeding" them to this trip as well. Speaking of the dogs, it is official: not a one of them could masquerade as a therapy dog! 

We are planning some visits (mostly others coming to see us) in the months ahead and are in hopes that the plans will get carried out. If you are some distance away and planning to come to So. Cal., especially if planning to stop in at our place, please know that we are not equipped to "put up" any guests at this time (though once we get the motorhome set up as we'd like, that could change, and if you are one of the very few who has mentioned coming to see and stay with us, that is the plan - hey, it's a private quarters!). We also ask that folks not "drop in" because they were "in the neighborhood." Our neighborhood is not one in which many people just find themselves, but we probably would welcome you (if you promise not to "white glove" my house) with a bit of advance notice. (Please, if ill, recently ill, been around people who have been contagious recently, do not come . . . even added together Butch & I don't have a single immune system worth anything!)

Speaking of people coming by . . . I want to sincerely thank those who have helped, plan to help, offered to help, etc. as we work to get our home in some sort of order. I still have projects needing attention, but have to set them up as 2 or 3 a week, at most, since my own stamina is limited. That also means that most tasks are limited to no more than 4 hours and most take place in the afternoon, as we are not morning people (both of us often have trouble sleeping at times). Thanks for understanding! And there are a lot of projects in the queue (porch cleaning/organizing, closet cleaning/organizing, continued organization in a couple of rooms that are almost there! etc.). But there is no rush. Neither of us has in-laws we dread seeing our home so things will get done when they get done! Most important: health. But that also goes for all reading this: lots of weird stuff out there . . . please stay healthy!! 

Journal entry by Jean Hibben

This has been an exhausting week. I understand that much of my time has been spent sitting and waiting, but I've determined that can be tiring... Probably because I'm waiting for decisions or results and my mind tends to horriblize possibilities. Even tho most discoveries were on the plus side, worrying can sure take it out of a person. Meanwhile, Butch just slides from one event to the next as tho this has been the routine his whole life (well, at least it is these days). So, what was so overwhelming and stressful? 

On Wed we started early with Butch getting labs done (blood tests to determine levels on all sorts of things) and then he headed over to talk with the gastroenterologist to see how they are evaluating his liver surgery where they put a Stent in so the bile could drain. All seems to be in good shape but he was told that occasionally those stents need replacement and he was made aware of what the symptoms would be. So far so good. I slept in the car while he did those appointments. 

Next we left the VA hospital and went to another building where he had an appointment with the pharmacist, primarily to go over his insulin needs. He keeps a record on his smart phone to stay on top of his numbers and the pharmacist was pleased with a fairly regular pattern. He wasn't pleased when she emphasized that less fat and more direct methods of raising the blood sugar (juice, hard candy) are preferable to mini Hershey bars. I'm not sure he believes her. We were all pleased with the results of his earlier blood tests... Levels of all things examined were normal or significantly improved. 

We had a pleasant lunch with a good friend after the apptmt and before going back to the hospital proper where he got his third chemo treatment. This time they doubled the dosage, but he was done in record time... Woke me from my nap in the car to go collect him. (I said this was a tiring day.) His side effects of nausea and abdominal pain were a little more pronounced than after earlier infusions, but nearly gone by the time we got home. He walked just fine and, tho somewhat tired, was still alert and ready to drive. 

Got home, ate leftovers, and virtually fell into bed. But not before setting alarms for Thurs (today) in order to do it all again! 

Actually, there was only one doc apptmt scheduled for today, but had a bunch of errands to run, many dealing with the "new" RV. Plus, seems that over the past weeks, the frequent doctor apptmts cut into the regular process of accomplishing the mundane: shopping, paying bills, writing emails, returning phone calls, etc. Then it was time to get to a late afternoon apptmt with the podiatrist. We learned that at his last visit, Butch was pronounced CURED of his wound: the toe space is HEALED. We got it verified today. He'll still be stopping by for rechecks and they want him to try another size shoe since the initial ones don't seem to be large enough, so he just may be out of those black Frankenstein's monster clunky sandals in a couple of weeks (special shoes with inserts accommodating the "toe space" are preferred over "off the rack" strides).

Since the last entry, we have finally received the RV we ordered back in September or October and are outfitting it for upcoming camping excursions. We are very grateful for friends who have been helping me organize things into the camper as well as getting rooms in the house back to some sort of normalcy. There are many projects still ahead, but it is all coming along... a little at a time. 

My own asthma is much more under control and I'm being careful not to overdue (as evidenced by the naps I take while Butch makes his rounds at the medical center). That does not mean that I am avoiding stress, but Butch and I try to make and take time to discuss our separate concerns and fears. The survival rate for pancreatic cancer patients has been quoted as 7%, but recently the percentage has gone up to 10%. I know it still sounds hopeless, but when a person is in that small population, it's 100% for that individual. And why shouldn't Butch occupy that group? 

Again, we appreciate the kind words, help, prayers, and positive thoughts. The fact that just when he was diagnosed with the cancer, Butch's stubborn toe amputation wound made huge healing progress and suddenly the opening that had been treated for over 9 months closed up with no sign of a scar and only healthy skin covering where a toe once had been. You can call it a coincidence, a pleasant experience of positive timing, or a miracle. Whatever it is, we are just fine with it. 

Journal entry by Jean Hibben

Yesterday Butch had an appointment with his oncologist and then received his second infusion of chemo. The doctor is keeping him on a very low dose for at least one more session after this one, then will increase if his stamina is good enough and there's been no heart issues that have raised their ugly heads. Again, Butch was strong and walked out of the room, not even needing his cane (tho earlier in the day his oncologist was definite that he should not be wandering around without it...I don't think Butch heard him, tho).

He felt strong enough to drive home, which was good because I was nearly asleep by the time they released him. I had done some computer work while waiting but the WiFi was not working and the cell signal in the waiting room is terrible so even using my hotspot was touch and go. Sitting and waiting for files to load plain puts me to sleep, watching that little hourglass go round and round. 

As for me, I have enlisted help from some of the dear ladies who have said, "if I can do anything for you, just ask." I asked. And our big thanks to the ones who have come by, or are scheduling to, to assist me in clearing out rooms or parts of rooms. I know that these dear folks have said that they didn't do much, but they kept me motivated, helped me make decisions, and when I got frustrated, they assisted in calming me and reminding me that nothing requires immediate action (except, possibly, some bill paying).

So next week on Wed we pick up our long-awaited RV and all the things being stored in the living room and part of the garage get to be stored (as space permits) in the new vehicle. Any takers for helping with that task? (The good thing is that I'm only able to function for 3 to 4 hours of work.. My asthma dictates what and how much I can do.) Hoping to do it sometime between Thurs the 30th and Sat the 1st, but could even do it later... Our next planned trip isn't until the 28th of Feb.

As always, thank you for the uplifting thoughts and words and ongoing prayers, prayer lists we've been placed on, and kind offers of assistance. We are blessed and can't count as high as we'd need to in order to number them all. 

Journal entry by Jean Hibben

So this is a 3-part post, covering the last 3 medical visits and consecutive dates: Jan 8, 9, and 10.

Podiatry

Dr. Williams has been with Butch almost from the beginning of this odyssey so he has a good feel for the progress (and lack of it, which has been in much larger quantity than the forward motion). To give you a sense of what these visits are like, and explain the whole situation (skip this if you have already heard or read - Or been on the front lines, as a few of our support folks have been when I couldn't be present - the play by play of the game). 

Back in November 2018 Butch finally sought help for a small cut he had on his right big toe. It didn't look bad, but it hurt and he visited the VA ER where they set him up with podiatry and efforts were made to save the toe, but gangrene had set in and infection got to the bone. He'd been dealing with other issues (bleeding stomach ulcers, prostate enlargement, heart problems that the VA cardiology team could work on, vascular problems - common for a diabetic) that complicated things and required some hospitalization and the eventual amputation of his toe (once they conquered the MRSA infection). He was provided a machine to help his blood flow in his legs and it appeared that the vascular condition was good enough for the "toe space" to heal. Toe removal was done a year ago the 31st of this month. After a couple of months with no real change, more tissue was removed. And every 2 or 3 weeks he'd be back for evaluation by the podiatrists, who eventually started talking about the need to remove the lower leg. But vascular surgeons wanted to wait. As it turns out, it's great that the vascular folks won that argument, at least for a few months. Butch changed his dressing every day or two, treating the wound as instructed. And the VA kept us well stocked with every imaginable dressing supplies. 

A couple of months ago, on a regular podiatry visit, Dr Williams noticed Butch's skin was looking yellow and getting moreso as he sat there. Since he also had an apptmt with the pharmacist, it was decided he should get blood drawn and see what was happening. They took his blood and we went home only to turn around and get him back to be admitted for more tests. The diagnosis : pancreatic cancer (see earlier posts for more on that). 

But let's back up to the podiatry visit of the 8th. After months of no improvement on the wound healing, suddenly the open sore was visibly healing (and we'd purchased a walk-in tub, planning for him to lose a leg). But that's OK... We are happy with his keeping the leg, but we've also seen the steps backwards that have been taken so many times that we are being somewhat reserved in our celebration. But this time there was no dressing of the foot before he put socks and orthopedic sandle-type shoes back on. So he asked two questions he hadn't dared ask before this time : "can I wear 'regular' shoes yet?" (Note: "regular shoes" are actually specially made for his feet with a carefully formed insert to fill the place where his toe had been... These he had received over 6 months earlier. ) Answer: "yes, but a little at a time to get used to the amount of support the new footwear provides." Second question : "When can I take a bath? " (while he could shower with a huge water repellant "boot," he could only admire the walk in tub with the jets and comfort accessories) Answer: "now!" We couldn't drive home fast enough!!

Best podiatry visit in over a year! Hoping and praying the progress continues to be positive (labs for the last 6 months or so have proved no further infection... And that included a check on possible infection in the bone... He has been infection free and off antibiotics for about a half year). 

Oncology and Chemotherapy

Jan 9 was the first day of Butch's chemo. As mentioned in an earlier post, the dosage is very light and only one chemical is being used. Chemo and heart issues fight with each other, with potentially disastrous results. This means that he both walked into the oncology infusion department and walked out. He had anti - nausea meds sent to the house a week earlier to take before the treatment and another pill was given at the start of the treatment. The result is that, he had a little queasiness after the 2-hour infusion (prior to the infusion, Butch had labs done for them to check for any issues... He was told, for I think the first time, that his blood test was normal! Once they had the lab results, his chemo medication was mixed on the spot, tailored to his needs). After the experience he reported his pain level at about a 2.

While Butch received the infusion, I napped in the car, prepared to obtain a wheelchair to get him out to the car.... But there was no need. He walked out as he had walked in. 

Chemo will continue, at least for the next few months, every 2 weeks, continuing to be mild until it is clear that the chemo strength or quantity of types mixed together can be slowly increased. 

Palliative care

Friday, Jan 10, we had an appointment to meet with the doctor in charge of Butch's full wellbeing. For over an hour he was asked about his family, his life, his general health and attitude about it, specific issues that have governed our lives for more than a year, etc. We will meet with her again in a couple of months to go over physiological, physical, and psychological changes, as applicable. 

I had been under the impression that this part of the care would include caregiver health and behavior, but not really, other than as it affects the patient. I will probably be talking to the caregiver help groups and specialists that the VA has available. 

This coming week, there are no medical apptmts and we will be working on organizing the house for the convenience of the residents (us). As various supplies have arrived, junk mail has accumulated, etc. My energy has been so low that tearing down boxes for recycling, filing mail, etc. just hasn't been a priority. There are very few chairs without things on them, laundry has to be put away, and the whole house needs a thorough "walk thru." That is the plan for the upcoming days. 

As I've said before, we appreciate the prayers, thoughts, and support. We are blessed. 


Journal entry by Jean Hibben

So today we visited the oncology Dept at the VA. When talking about pancreatic cancer, the medical staff is not sure what we already know about the patient's condition nor what we have experienced with friends/family nor read on the Internet, so they are cautious how they approach the subject. Our approach is very pragmatic. We know what lies ahead, in general (though every case is different) and the fact that people with heart disease who get chemo often have difficulties with the cardiac conditions. Dr. Hardin, Butch's oncologist, confirmed that and also that the location of the tumor makes surgery a poor choice, at least at this time (see previous post). Anyway, the doctors are comfortable with our ability to discuss prognosis, death (most likely to happen in the form of a heart attack than from the cancer), and treatment options and consequences..

So here are the plans:
Butch will start on a very low dose of chemo every 2 weeks soon after the first of the year. This treatment will be carefully monitored (ie, heart condition will be taken into account first and foremost after whether or not he can tolerate the drug, in general, plus what affects are on  the tumor).

Obviously, this is not like a "take a pill and call me in the morning" nor a brush off of our concerns. Dr. Hardin took lots of time to answer all our questions, as well as get information on how Butch plays the saw!

We will also be contacted by the VA's  palliative care Dept (hospice plus more, specifically designed for veterans and their caregivers).

On the other foot (as opposed to hand), Butch had a foot check on Wed and the belief is that, tho slow, his toe amputation wound is improving. I talked to Dr. Hardin about the affect on wound recovery for those taking chemo and he admitted that wound recovery would be hampered. Maybe for Christmas Butch will get a cured "toe space" ("all I want for Christmas is a healed toe space....". Maybe not). 

While we were at the VA on Wed, I took some time to visit with the Decedent Affairs office to get procedure info for when the inevitable happens (trying to reduce stress in advance). The gentleman who talked with me was very clear and gave me some literature that will allow me to make advance plans. So my anxiety level is reduced some, but ...

I'm told often to take care of myself (easier said than done, tho the palliative care people can help in that regard). I have been nursing a cough for about 3 months (no temperature or signs of any illness, but some lung strain). My doctor had me get a chest x-ray...I was sure he was looking for signs of COPD, emphysema, pneumonia, or asthma. He's leaning towards asthma, which gets worse when the stress level goes up. I have come up with a diagnosis: caregiver's cough. The body responds to stress with a multitude of health issues and I'm getting to experience some (not all that I need to mention on this platform). I'm learning to manage these issues and keep working on meditation (something that has never come easily to me). Butch does not need a sick caregiver, even if what I have is not contagious. 

That brings me to one last point. Butch is often tired during the day (this will probably get more intense once he starts chemo; first round: Jan 9). He enjoys visitors (esp if they are able to ignore our rather cluttered house... I've chosen a medical theme for my living room decorating scheme), stopping by without calling first is strongly discouraged. Between runs to the VA and his naps, he's likely not available, so having a little schedule time really helps us. And if we are not able to have you over at a particular time, please don't take offense... The entire process of recovery and caregiving tend to zap our energy. (I may have already said this: we have our meals coming via Schwan and prefer NOT to have meals brought in... This does not hold true for gifts of Christmas cookies!)

I think that brings us up to date. Butch is on Facebook a lot and if he is not on your friend list, make a request (helps to include a small note how you connect with him as he's almost as paranoid in accepting friends requests as I am,) Look for Unclebutch Hibben

Journal entry by Jean Hibben

Friday the 13th... Not a bad day here; not a good one, especially. Butch met with his general practitioner who sort of went over all the serious issues he's dealing with, gave him suggestions for regulating his insulin (it is still a new element in his life and there's a lot of adjustments, especially since he's getting an appetite back and that affects the blood/sugar in one way or another). There were a lot of Q/A, which was helpful.

When we were leaving, we ran into the pharmacist so he was able to ask a few additional questions that his gp suggested he direct to her.

As for any news on the cancer, that is scheduled for next week, along with the podiatrist's latest conclusions about the toe amputation and plans for any future body part removals. It will be a busy week, but Butch has developed a lot of renewed strength (thanks to better sleep and appetite) so he is doing some small tasks around the house. That makes things a bit easier on me.

We are slowly coming up with new approaches to things (tasks like feeding dogs, locking the house at night, getting the mail - across the street, emptying wastebaskets, etc.) and compromising to keep us both from getting exhausted (something I'm still working on the management of... To avoid, that is).

We continue to appreciate the thoughts and prayers and well wishes in their various forms. Our family and friends are the best!

Love and peace,
Jean and Butch (or whatever you call him)

Journal entry by Jean Hibben

Not every medical issue means surgery and such is the case for Butch. For someone of 81, he's in good shape (often walks without a cane, tho still waiting for that to amputation to completely heal). However, though he is still quite able to fix his own meals, drive to appointments, do light shopping, go to church, etc., his insides have taken a real beating. He is just not up to the stress of surgery, for a few specific reasons: his heart is not strong enough and the tumor is right on or at a blood vessel that is 3/4" in diameter and just a tiny knick could easily be the last for him. Diabetes, poor circulation, gastrointestinal problems... All combine to make him a poor choice for being a surgery patient.

On the other hand, the tumor (2cm x 2cm) is slow growing (at this point, at least) and he appears to be a candidate for chemo and/or radiation and whatever other amazing new discoveries are provided (we will be sticking with the VA teams and their recommendations, not investigating the many claims of "sure cures"... Beyond fervent prayer from any who wish to include us in their prayer regimen or that of their churches, the VA has a very knowledgeable and experienced team).

The next apptmt for oncology is Dec 20 and the different options, schedules, etc. will be presented then. Meanwhile, I've got a long "honey-do" list so he doesn't get bored. Oh, and we will avoid most large gatherings (esp. if the air circulation is limited) so if we turn down your invitation to a holiday party, a church gathering, or a concert, it is not about you or the event... Thanks for understanding...neither of us can afford to get sick(er).

Thank you for your kindnesses, offers to help, prayers and positive thoughts, etc. Our support groups in our various circles are a constant comfort.

Love and peace,
Jean (and Butch/Lynn/Al/Dad/Brother/Uncle/Grandpa)

Journal entry by Jean Hibben

It's 3 days since the diagnosis and it feels like 3 weeks! Probably because we have been waiting to learn what steps are next. I'm going to try to be clear enough here so people don't write me asking "huh?"

Today we met with the oncologist and the intern (the latter will be helping with translating what the oncologist says and adding clarification help, appointment arrangement, etc.). Because the level of bilirubin is still very high (not enough bile has passed through the system, in spite of the stent inserted to help with that process), no immediate action is recommended. The mass is apparently right at or on a blood vessel and surgery is not practical at this point, tho the primary oncologist will be discussing options with the "oncology team" in the next couple of weeks. They will reexamine the CT scan and also hope the bilirubin issue resolves itself. Butch is still a bit yellow, but nothing like he was 5 days ago, let alone 7 days ago when this whole fiasco began (when he could have entered his head in an "orangest pumpkin" contest).
So at the moment, we await info about today's bilirubin level, per the blood drawn this morning, and how that sizes up against the next blood draw in 2 weeks from today, when he will again confer with the oncologist, who will hopefully have information on what the "team" thinks, as far as treatment procedures go.
A bright spot was that his heart has been deemed "not as bad" as we've been led to believe, but the surgery is an 8-hour ordeal and they want everything in top notch condition so heart, lungs, and emotional state should be as "up" as possible. He will be having a stress test (to determine heart strength) sometime in the not too distant future. 
Next Wed (the day before Thanksgiving) he is scheduled to see the podiatrist again and get some feedback on whether or not further amputation (his big toe on the right foot was removed back in January) will be needed since the "hole" from that procedure is still not closed completely (well, maybe it has... Wed we'll learn more).
So this is where we are at this point. While he has some dull type pain in the abdomen and a nasty cough (which must be long over before any surgery), his spirits are good. His energy is still dependent upon how much rest he's had and how much pain he is experiencing. No new medication called for, following this visit! Now, that's a first, I think.
Happy Thanksgiving to all...we sure have a lot to be thankful for, not the least of which is the VA.
Lynn (Butch)’s Story

Site created on November 19, 2019

Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement...especially positive, funny, or uplifting experiences or memories of your relationship with Butch. These will help him feel connected to the many special people who have touched and passed through his life. He has been diagnosed with pancreatic cancer. In the coming days and weeks (and hopefully months and years, as it was caught early), we will have a better grasp on what he can and cannot do, his energy to continue with his music endeavors, and his strength to enjoy visits (in person or Skype/FaceTime or phone). His first appointment with the oncologist is this coming Friday, Nov 22, after which we will have a better grasp on his course of treatment... prayers are always welcome. Thank you for visiting.

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