Can we have a forum for "older" people with bc?

This morning take a few minutes to reflect on
how you give of yourself to the world. Often we
get caught up in the frenzy of buying and
giving things. Look at the ways you give
appreciation, friendship, energy, time, love,
and affection, and give of your own special
talents and abilities throughout the year.
Acknowledge yourself for having enriched the
lives of others.Spend some time loving
yourself for the giving light that you are.

Shakti Gawain

Puffin, I have an idea how you feel. Enough is enough! How much is a person supposed to take? We've had three and a half straight years of bad things.

Just when I thought I had dealt with one thing, the next happened. There was no time to breathe, much less find a way to adjust. I can take some comfort in the fact that I haven't actually gone crazy yet...or have I? Who can tell? Hope you find your way through it soon.

Mike is 81 days past his bone marrow transplant. Only another 3 weeks or so until he is "released" from his clean room and interact a bit more with the world. He can move back upstairs to our bedroom but I think he's so used to his room, he might stay there. Milestones are the first 30 days, day 100, day 180, and the BIG one: one year. overall, he has a 50/50 chance of making it.

Up until a month ago, things were going very well. Then his platelets began to fall. They've continued to fall about 20 points a week. They doctors are now concerned. He had another bone marrow biopsy a few days ago. We will get the first preliminary results tomorrow but it will take another week or so to get it all. Hopefully they will be able to figure out what is causing this. The dire possibilities keep me up at night. It could also be a fluke and might reverse itself.

I haven't been on here much in the past couple of weeks but I've been very busy coloring. It keeps my mind off of what could happen. I even entered a coloring contest sponsored by the best hamburger chain in Texas, Whataburger. I won't win, of course. There are so many professionals who have already posted pictures. But nonetheless, it was fun and these days I need to grab any moments of fun that come my way.

My greatest accomplishments shall never be known, perhaps even to me. Having made someone smile and see the world a bit brighter, having given someone hope for the future, having helped someone see potential inside him or her self that he or she never might have seen otherwise, having helped someone to see just how beautiful he or she really is--these to me are the achievements that most can help this world to be a brighter, more loving place.

tom walsh

We saw the doctor this morning. Platelets down to 63. This is not good.

I am so sorry. Prayers and healing thoughts on the wing.

(((((((((Mike and Sandra))))))))

Many healing and hopeful energies coming your way.

Jackie

Sandra-

Hugs, prayers and good thoughts coming your way.

Anne

Puffin and Sandra, you both are in my thoughts.

I hope that my achievements in life shall be these -- that I will have fought for what was right and fair, that I will have risked for that which mattered, and that I will have given help to those who were in need that I will have left the earth a better place for what I've done and who I've been.

C. Hoppe

So many brilliant and gifted people squander their gifts because they lack the humility of self-understanding. When we think we know it all, we miss the point. When we think we know everything about ourselves, we show our ignorance and our arrogance. The wonder of human beings is that we are constructed in such a way that we can spend our entire lives exploring our inner universe and its connection to the universe as a whole and still barely scratch the surface.
We are a wonder for us to behold. -Anne Wilson Schaef

Hi to all here...
It's been awhile since I've posted but I've been reading recently.

Sandra, we are praying for Mike and for you through this time of uncertainty. Sending positive thoughts and healing prayers for you and your family.

Puffin, how sad that your SIL has passed so quickly. You have had too many losses.
I am happy to hear about your 2 years. I wish you continued health. I am sending hugs and prayers for you and the family.

Carole, summer must be near if you are putting your boat in the water. I wish you a good week ahead as you enjoy your long vacation.

Jackie, thank you for being here each day to greet and inspire the ladies here. I wish you a good week end with peaceful moments.

Joan

I had a seemingly inexplicable arm LE flare shortly before bedtime last night--after being totally fine (ring was even loose) for a few days I suddenly felt a soreness and tightness on the inside of my forearm. I did MLE, and wondered. “maybe the weather reports were wrong--is there a storm on the way?” (My arm and my sinuses are great barometers). Checked the weather app on my phone and sho’nuff--those little stratus-cloud-and-lightning icons next to Sat. & Sun. And this morning it was gray. Had to go to the Immediate Care clinic to get my back biopsy bandage changed (I can’t reach it!) after I carefully and painstakingly showered. The nurse didn’t have any Tegaderm dressings (my derm used one over the pad-and-tape), and I'm sensitive to conventional adhesive, so she used a lot of paper tape and warned me it might not hold--and not to get it wet. Next time I’ll need her to change it will be Tues.--she said to bring my own Tegaderm. So I went across to Walgreen’s to buy some (yeesh, it’s pricy) and just as I was checking out....the heavens opened. Waited for it to ease up a bit and dashed as best I could to my car before my T-shirt could get wet and the bandage fall off. (Tomorrow, Bob can change the bandage; Mon., either my LE doc’s nurse or my housekeeper can do it--and she can also do Wed, Thurs., & Fri. Next weekend, I’ll be dependent on the clinic again. (Even if they start charging me, Medicare’s likelier to cover it than it would a visiting nurse).

Had to back out of a quasi-gig for tomorrow--a friend out in the far w. suburbs is celebrating 50 yrs. in music and I was to be part of a 20+-person lineup. But it’s an all-day thing (I was supposed to back him up at 2 but not do my own original till at least 6, and the “last dog dies” at 10) and Bob doesn’t want to go. Moreover, because the sutures are on my back, I have restrictions on lifting, reaching and stretching--not very conducive to draping my arm over a dreadnought-depth guitar, much less carrying it. I hope it eases up by Fri. night, when my songs will be the “muse” for Gordy’s improv troupe at the comedy collective he belongs to (three sessions of two songs each, and they will improve a sketch after each set). He will carry the guitar, of course. And he will make me look & sound good, because he’s running tech that night. It’s during the first night of Andersonville Midsommarfest--which used to be free (and my long-ago cover band used to play during the daytime). Now, it’s one of those interchangeable street fairs run by the city and subcontracted out to an event-booking agency--with regionally semi-famous bands playing the stages in the evening, people having to pay $5 and up just to get in, and beer-besotted millennials everywhere. Gordy fears that nobody’s going to want to pay to get into the fest and again into the theater (though I think there might be theater-only access on s side street) and nobody who paid to get into the fest is going to opt for a comedy show rather than the band whose songs they might have heard on the radio). I’m going to bill it as “come for the beer and the bands.....stay for the air-conditioning."

It is from numberless diverse acts of courage and belief that human
history is shaped.Each time a person stands up for an ideal or strikes
out against injustice, he or she sends forth a tiny ripple of hope, and crossing each other from a million different centers of energy
and daring those ripples build a current which can sweep down
the mightiest walls of oppression and resistance.

Oops Anne...that was Puffin who posted about the family issues, not me. I've got enough on my plate without it.

Puffin, what a nightmare. Just going to a funeral so soon had to be very stressful for you. Then you had to be a watch dog. Glad it's over.

I wish I had some positive news to add to the group. We saw Mike's doctor Friday and got the preliminary results from the recent bone marrow biopsy. I knew it wasn't good when Mike's doctor, who always stands, pulled up a chair. Mike still has bone marrow cancer. The percentage of cancer in the marrow is exactly the same as it was a month before the transplant. The transplant didn't work. It wasn't a 100% failure because Mike's main problem with red blood cells seems to be fixed - at least so far, however the falling platelets at this stage of recover is indicative of bigger problems.The majority of the results won't be in until later this week, but it's likely to be more bad news in the doctor's opinion. Mike is crushed. He thought he was doing so good. He will be put back on chemo for a month, then with the second month, will get DLI...an infusion of T cells from the remaining frozen bone marrow stem cells. It's very dangerous but there is no choice. It could work but the chances aren't good. Still we are going to give it our best.

Last night we went to a restaurant with a group of friends to celebrate my friend's birthday. We haven't done this since before the transplant and hadn't thought he would be well enough to be out in public yet. Usually that's after day 100 and he's only at day 86 but his white cells, which fight infection, are nice and high so we went. No one had seen him since the end of February. They were, of course, surprised that his hair is gone and laughed at his sparse, fledgling mustache and goatee, but there was so much love and support in that room! Did my heart good too.

Our deepest fear is not that we are inadequate. Our deepest fear is that we are powerful beyond measure. It is our light, not our darkness that most frightens us.

- Marianne Williamson -