Platelet infusions

We are all here for you so I hope you don’t feel too alone. There is another member in our forum who has written a very poignant message this past week about
How do you say goodbye?”, as he faces the final chapter in his life. https://connect.mayoclinic.org/discussion/how-do-you-say-goodbye/
If you have any desire to share your thoughts, stories, emotions, words of wisdom, regrets, dedications, elations… it would be wonderful if you’d like to add to the conversation.

I know it’s impossible for anyone to truly understand what you’re going through. This is ultimately the most personal journey anyone can take. I came very close to those pearly gates twice and felt an enormous sense of peace. I no longer have any fear of my final hours. But it’s difficult to impart that feeling to others.
You mentioned your family, friends and church are all very supportive. Do you have regular visits from your minister?

How often do you have a hospice nurse visit you? What are they offering you at this time?

A RN will visit every Monday and a CNA on Fridays. I will receive all Agrace services and they are impressive.
I spent most of Thursday at hospital treated with 2 units of blood and 1 unit of platelets because my CBC numbers were "alarmingly" low.

Good morning, @crhilston. Oh gosh, those are long days when you’re having 3 transfusions back to back. I used to get a lot of reading done during my time in the chair. Do you take a book or tablet along to read or do puzzles? Audio books are a good way to pass time too.

You must be in southern Wisconsin! I’m familiar with the Agrace services. They are a wonderfully caring organization and very helpful. We referred to them as visiting angels with my husband’s aunt…so compassionate and understanding.

I hope you’re feeling a little perkier now that you’re up ‘2 pints’ ! ☺️ It’s amazing how much better we feel after transfusions.

Speaking of perking up, it’s been so terribly dry in Wisconsin for June. But we finally had an all day soaker a couple days ago. Grass is greening up again and my weeds are flourishing! 🙄 And, right now I’m watching a bunny in my flower garden nip off the heads of my flowers!! There’s no wind right now but the plants are moving! Then one blossom after another is tipping over! Time to get off the couch and scare the bunnies and the neighbors! It’s only 7 AM and I’m not ready for human contact. 😂 Neighbors will think there’s a scarecrow in my yard!

Yes. I live in Madison and haightve for about 50 years. We (family) have also lived in Michigan, Ohio, and Virginia while I pursued my career When I reached 90 I was in good health and thought I might be 100 some day. Then, just 8 weeks ago, I got an AML diagnosis, and at 6 weeks I am in hospice! Hard to process. My family is very supportive but refuse to talk about what my, and their , future looks like relative to my disease.
I have not seen a hospice nurse yet. On Thursday (22th) I have my next CBC, hematologist consultation, and 12th blood transfusion. I'm at the point now is just to know "how long?)

We’ve spent a lot of time in Madison over the years. Our daughter was a grad student at the UW. She and her husband were married at the capitol building where he worked for a few years. Always something fun or interesting going on there,

I am so sorry that this unwelcome leukemia is messing up your 100 year plan. It stinks and cancer just doesn’t play fair! I was cruising along too, life was great and I was feeling, at 65, that I was the picture of health and maybe I’ll be one of the lucky few who won’t ever have to deal with cancer. AML just struck right out of the blue. I never, ever thought about a blood cancer.

I know what you mean, it is really hard to process how quickly this seems to hit! In the beginning, for some people there can be few symptoms and by the time it’s discovered it’s often very late in its progression already. I felt nothing until 3 weeks before I was rushed to the hospital. I don’t know if you saw my private message to you or not. It should be in your Connect mailbox, but I talked a little more about treatments. You were so healthy and active up to this point, that I’d wondered if some of the newer abrogating medications might be an option for you. They are pill form and taken at home. It can slow the progression of replicating cells. I know that the full, aggressive chemo would be harsh, but there can be smaller doses. I’m just curious if were you given any option for treatment at all? Or did your doctors feel this wouldn’t be of benefit?

Oh gosh, it is so awkward talking to family and friends about end of life decisions. My husband didn’t want to hear this from me either but I finally just said, “You have to listen to me! This is maybe my only time to discuss this with you.” He’s a brilliant man but the swiftness of my decline clipped him off at the knees. This man I’ve known forever who is logical, structured, and disciplined was a puddle of mush! Our daughter, who was 35 at the time was actually much better. We spoke openly and frankly about my wishes. We talked so freely about thoughts of what next, how they would cope without me, what I thought would happen when I passed, etc. Once the ice was broken on those taboo subjects then we light heartedly had many conversations.
So I really hope you can impart on your family that now is your time to say what you need to say! That they need to listen to you and share what they’re feeling.

What was your career that had you living in different states. Were they the same job with transfers or new positions in different companies?

Thank you again! Your talking to me via Connect is truly a blessing. I think that my family has begun to accept that I am terminal and they must talk to me about what I want to talk about.
Regarding my AML, my doctor has been very frank with me. She said that if I really want to take treatment (chemo) with the goal of remission, she could not order it. It would only make me sicker. (My mother denied chemo herself, and for the same reason.) And I feel the same way. I think that my journey my journey may end sooner than later and I don't want to spend it praying over the toilet (so to speak!)
Briefly, my entire career was spent in education at several levels. I was a teacher and a principal in Michigan and Ohio.
Then I left those roles and entered the non-profit professional association field, first as head of the elementary and secondary principals' associations in Ohio, then to Washington,,
DC as a director on the staff of the National Association of Secondary School Principals, and, finally, to Wisconsin to be the executive director of the Association of Wisconsin School Administrators (for 30 years.)

Good morning. ☺️ You certainly had an exceptionally successful and impressive career! Think how many lives you’ve touched over your lifetime and the impact you’ve had on so many children and their successive generations. Most of us had a particular teacher who left a permanent, positive impression with some little snippet of imparted wisdom. It’s part of the goal and legacy of being a great teacher. Thank you for all of your dedicated work over the years. I imagine your head is spinning over the state of the education in some states right now.

I do hope your family lightens up and can share some of these personal moments with you. When we reach the point where mortality isn’t just a nebulous thought somewhere ahead in time, we become very pragmatic and open. It’s difficult for others, who are not there yet, to understand our desire and need to speak frankly. Hm, as an educator, how many times did you stand in front of the room with your students hearing but not listening? ☺️

I respect your decision to ride out this life without the indignities the treatments might bring for you. Quite honestly, from my experience with AML, it is one of the more quiescent ways to pass in that I had absolutely no pain or discomfort. I simply would have passed in my sleep.
But my pesky daughter and husband had other plans for me and at 65 I was wasn’t ready to throw in the towel. So it was ‘damn the torpedos, full speed ahead”. However, I fully agree there comes a time when we face the reality of the situation. I would absolutely make the same decision as you are if my circumstance were similar and enjoy my remaining without the side effects of treatment.

I’m just curious if you’re currently in an independent or assisted living community where you have shared mealtime with friends for some daily comaraderie?

Of course, I want to thank you again speaking with me frankly! It really does help.
And, thank you for your very kind comments about my career.
Currently I live in a CCC on the east side of Madison in an independent apartment. My goal is to keep this status until I can't live alone. If/when that day comes I can move to assisted living or skilled nursing here in this facility. I am in hospice care now and it shares my goal. A continental breakfast and dinner is provided and I try to do both, mostly for the socializing because I have zero appetite.
Tomorrow is my next CBC and transfusion. I wonder what my "numbers" wil say now?

God bless you brave lady x

Just checking in to see how your appointment went today…or is still upcoming perhaps. The transfusion will help recharge your system again. Not nearly as fun as a Lemon Drop martini… I can’t drink those anymore either. Boy, our lives sure change abruptly when we least expect it. 🙃

I’m sorry to hear you have zero appetite. Makes it very difficult to feel like eating anything. It’s great that you’re still able to join your cohorts at breakfast and lunch. It really does seem to help when you’re sitting with a dinner companion to be able to eat, even if you’re not very hungry. Talking and eating seem to go hand in hand…I tend to overeat when I’m out with friends. Hah, and then I can make all kinds of excuses for eating things that are usually not on my healthy diet list!

It sounds like you’re in a very nice facility where you can migrate over to different areas as the need arises. You’ve certainly been blessed with a long, independent life. A friend’s mother who lives in Madison had her 93 birthday last week. She just moved to a similar facility where she is independent but has the ability to change services when warranted. That takes quite a bit of the worry away from unexpected life changes and having to move.

I hope your day at the clinic goes well. Let me know what you find out, ok? I promise I’ll always be frank and open with you so nothing is off limits. Hugs.