Discussion in 'GatorTail Pub' started by lacuna, May 2, 2019.
I did, and made the correction. Thank you, Nawlens Gator
A sad, sad time for you, J. You wrote a 'blood clot had broken loose' - had Mrs GK been ill before this tragedy?
And I wholeheartedly agree with you about advance care directives. Several copies of ours are in all the necessary hands should they need to be exercised.
Thank you, diehard. Indeed.
Thanks, L. We will see. The 2nd session did not go as well as the first. Will write more on that.
She wasn't feeling well that day, a Friday, upset tummy like she had a bad taco from a food truck at the state fair. . We were going to go out to eat that night, but she asked if we could stay home which is not like her. Not in the same galaxy that there was something dire and dangerous. We were in the bedroom watching something stupid and funny on TV, and I happened to look over at her and she was white as a ghost with a look of terror on her face. I asked her if she was ok, she couldn't speak but shook her head "no". I then asked her if I needed to call 911 and she slightly nodded "yes", and then tried to sign language me.
The surgeon said if the blood supply to the colon is blocked, it only takes 2-3 hours for it to die, and we cannot live with a dead colon. News to me, but completely consisted with how that awful night went down.
Such a sad story. I am sorry
[The 2nd Keytruda infusion was given to me yesterday and my body did not tolerate it as well this time as it did the first, 3 weeks ago.]
In preparation for my 2nd immunotherapy infusion on Friday, I had a blood draw on Thursday. The levels determined by the testing allow or guide necessary adjustments in dosages of medications, so this is always done before chemo or immuno infusions. I was also seen by Frageelee immediately after the blood draw and witnessed her irritation with a member of her staff who had scheduled my back to back appointments in the lab, then with her. She was frustrated the appointments were so close together that the results were not available to her before she saw me. I doubt that staff member will make that mistake again.
Frageelee noted my BP was slightly elevated and advised I contact my GP to evaluate my need for medication to lower it.
The next day - Friday _ Trucker and I arrived at the oncology clinic for the infusion a little early and while seated in the waiting room we were pleasantly surprised to see the husband of Sue, the lung cancer patient receiving radiation the same time I was a few months ago. We spoke briefly with him as he was on his way to the rest room but caught up with them both later in the infusion clinic. Unfortunately Sue's radiation treatments were not as effective as mine but her tumor was reduced by half. As she is also a good candidate for immunotherapy the doctors are hopeful this course of treatment will continue the shrinkage. Husband Dale, said she is not as hopeful for her cure as he is (they lost a daughter to breast cancer 2 years ago), but will continue fighting her beast as long as she can. Her course of treatment is another type of immuno medication and she receives it once every 2 weeks. They live in Montrose, an hour and 15 minutes or so south of us, but that charming little town is on our list of day trips, so have agreed to meet for lunch when Trucker and I make that trip.
Each time I go to the clinic for treatment my vitals are checked and noted as dosages to be infused may again be adjusted accordingly. My blood pressure was slightly elevated as it had been the day before when Frageelee saw me, but not enough to be of any special concern. My port was accessed and flushed and an I.V. of saline was started while the appropriate strength of Keytruda was blended in the clinic's pharmacy. When it was ready the nurse assigned to my care while I receive the custom blended Keytruda and another nurse brought it to me for my treatment. Each nurse listened and observed when I was once again asked name and date of birth to verify the labeled IV packet they brought to me matched my responses. I presume equally documented care is taken by the in house pharmacist when the customized dose is blended and packaged in the IV pouch.
The nurse connected the Keytruda pouch to the main IV line and turned off the saline to open the Keytruda line and the immunotherapy infusion began. I settled in the comfortable recliner under a heated blanket and watched the activity around me. The treatment clinic is a large square room open and connected to an adjacent slightly smaller rectangular room. It contains approximately 15 recliners, each in a delineated space with a small TV for those who wish to watch television, and high speed wifi is provided. The space around the recliner can be made more private if the occupant wishes to pull the curtains closed. No one has done that while I have been treated at the facility.
About 5 minutes into my treatment I began to feel a growing tightness in both arms and across my chest. My head felt 'light', my field of vision darkened and diminished, my body throbbed and I felt as though I was about to faint into unconsciousness. I called out to my attending nurse who was 2 or 3 chairs away and she immediately turned towards me. She saw my distress and came to me while calling out to another nurse for assistance. They brought with them another set of equipment and I briefly wondered if that was a 'crash cart.'
The attending nurse stopped the Keytruda drip and attached a BP cuff to my arm. My BP was outrageously high and continued to climb, ultimately topping out at 247 / 110. They gave me something to lower it but mostly just monitored the situation while my body calmed down and the BP lowered to a less outrageous level. There were questions asked of me and books and charts were consulted. This apparently was an unusual and unexpected reaction they had previously not had to deal with.
Doctors were consulted and after my BP was back in the more normal range - about 30 minutes - it was decided the infusion could continue if I wished to do so, or it could be suspended. I made the decision to continue. I had not come this far to give up now. The drip was restarted and the treatment continued. After 3 or 4 minutes I again felt the same tightness in both arms and chest accompanied with a little panic. The drip was again halted and my BP continuously monitored until it lowered and the symptoms were gone. In all, the infusion was started, stopped and started 4 times before the Keytruda bag was empty. With each restart the symptoms diminished and I walked out of the clinic feeling fine.
We are continuing to take my BP at home as it is still high. Will call my primary care physician on Tuesday, after the Labor Day holiday.
scary numbers, not sure what to make of the staff being surprised at your body's reaction we think of you as a 'one of a kind' but in a good way I so much appreciate your continued willingness to share the steps to recovery and from all the responses I am not alone and think of you often here in Irvine, btw looks today like Dorian is going to beat up the coast and barrier islands but not likely to actually come ashore, of course that is as of 5 am by 7 it may have altered course..... be well, best to you and Trucker
JJ, thank you for your continued interest, kind words, prayer and support. Now, be safe out there while Dorian does its thing--hopefully out at sea.
the dunes and barrier islands are most at risk, with gusts hitting 220 it is going to be dangerous on the coast, here in Irvine with a generator that runs the water pump and the AC it should be ok, I will probably move my antheriums into the greenhouse their leaves are huge and not made to take much wind, I'll wait til late monday or tuesday to decide on moving 30 staghorns there fronds are more sturdy
thanks for thinking of us regards to you and Lacuna
God Bless you Lacuna. You're a tough Gator.
So mom has had 3 doses of chemo. Her hair is gone (she shaved it preemptively), and she has lost 14 pounds.
Every day she sends me a smiling text to show my son.
To quote Springsteen, mom is “tougher than the rest”
Thanks for the update, defense. If she's like me the weight loss is welcome, although my doctors told me not to try and lose weight while in the first phase of treatment. Even so, I did lose weight.
Though the treatments I underwent did not cause a severe loss of my hair - it did thin a bit - I feel for your mom with the loss of her hair. We women can spend a lot of time and money caring for our hair, making it look as good as we can and a 'bad hair day' can shake our confidence when it doesn't look as good as we would like. She took control of her loss, lessening the time of grief for that loss. She got it over with so she could concentrate on beating her beast. More power to her.
There are some very attractive head coverings and scarves sold on the 'Net. She likely has found sources for what she needs but I could supply a few links if needed. Some of the best are sites that sell scarves and wigs to orthodox Jewish women, many of whom cover their heads even though they have all their natural hair. Your mom will find her style. Don't forget to occasionally comment and compliment her, but stay sincere, don't over do it. I don't know about your mom, but I find the ordeal I've undergone has sharpened my B.S. detector.
Hang in there, Gator Buddy.
Silly me, I spent the last hour or so watching videos of the Gator Band in The Swamp playing all the familiar fight songs and a number of renditions of the Alma Mater. Tears flowed along with the lyrics:
Where palm and pine are blowing,
Where southern seas are flowing.
Shine forth thy noble...
Damn, I'm homesick. Trucker asked me if I wanted to go with him when he leaves on the 22nd. No, I'm not up to making the trip. He is driving. He likes to drive. I told him to make it for me. I will go with him in spirit.
Thank you, J. I greatly appreciate your encouraging messages on here. You, and other friends have helped Trucker and me get through this, boosting our spirits and nourishing our hopes. I think the reaction I had, with my BP going through the roof, was related to a tendency towards high BP that developed with the neurological disorder. My GP put me on lisinopril and it has come down. The doctors see no reason for me to discontinue the immunotherapy.
We were relieved Florida was spared the worst of Dorian. It cold have been, oh, so much worse. I thought of all of you, wondering about your plants and wondering if @cjgator76 managed to get all his wife's plants in the house before the winds came. We would have been dropping our patio furniture into the pool and priming the generator. I don't know if there were power outages in the Alachua / Marion area or not, but it would not surprise me if there were.
Thank you, wrp. It messages like this one that encourage me, 'cause Lord knows, there are days...
@lacuna the storm was a TV phenomena for us here in Irvine, I took my anthuriums in to the green house to save their gigantic leave and in the course broke one my Bat flower plants leaves are delicate so I took them down from the hanging rack I have and put them among the ferns, turned out it was unnecessary since the wind was never a true threat the staghorns never trembled and we got no rain to speak of , funny thing is just today a pine broke off about 18-20 foot up, it pulled a double pick up load worth of vines but won't even need chain sawing and the vines will be interesting to watch at least until winter (LOL)
I use lisinopril to keep my BP from sometimes being erratic, it seems to impact my balance to a degree, I went off it for a month and then went back with a cut to 5ms it doesn't help my energy level but I am ok with that most days there just isn't anything that needs a rush job.
over the years I have had several friends who had neuro deceases or problems I know there have been big strides in the field and hope you are benefiting from those...
take care and check in when you have a moment....
First time I have been on this forum. Some very deep, touching stories shared here. What I like to refer to as "real-life".
Lacuna - Wow, your rolling log is fascinating albeit "tough" at times.
While not a religious person I send positive thoughts your way and a wish
for "better" health. It's courageous of you to share such a deeply personal situation and I thank you for it.
Knight - So sorry for your loss.
There are a number of inspirational posts that have been shared here and I am in awe of the posters.
Don't "beat me" too severely for posting this, (I'm a real softy) but I have love in my heart for my fellow Gators, we share this wonderful bond. I wish for happiness amongst all of you and consider it a great privilege to interact with ya'll in a small way.
May all whom open their eyes today, smell the flowers (I love honeysuckle), take a big breath and enjoy this beautiful world with friends, family and of course Gators!!
Peace and Health Brothers and Sister's.
My mom goes today for her final dose of the first round of chemo. Today they will decide what the second round will entail. She may get four stronger doses, spaced over eight weeks or eight milder doses in the same period of time. Mom hopes for four doses rather than eight because the week in between she can live life quasi-normally.
I hope all is well with you @lacuna , we continue to pray for you at home as does mom (she has been fascinated by your story).
Thank you, defense. I'm getting along. More on that later. Your prayers are gratefully appreciated.
How is your mom doing? How far along in the second course is she now? Have they rescheduled her surgery? Hang in.