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.

Newest Update

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

Patients and caregivers love hearing from you; add a comment to show your support.
Help Lynn (Butch) Stay Connected to Family and Friends

A $30 donation to CaringBridge powers Lynn (Butch)'s site for one month. Will you make a gift to help ensure that this site stays online for them and for you?

Show Your Support

See the Ways to Help page to get even more involved.

Personal Fundraiser
Support Links
Helpful Requests
SVG_Icons_Back_To_Top
Top