My Bone Marrow Transplant (BMT/SCT) story: Will you share yours?

Good morning, @tml I’m away from my computer all day today, so I’ll going to be brief but will be back early this evening.
Because the possibility of a DVT is really bugging you and you have experience with those, I really urge to to start giving yourself the blood thinner. Watch the video again with a clear mind of, “I can do this!!” I had to give it to myself daily for many months. It’s easy peasy and almost impossible to mess up if you just watch the video.
Just find your navel, then on either side of it, grab a bunch of belly fat. I was super skrawny at the time and still managed to find a good grab. Right in the center of the squished part, put the little needle and give it a push. The needle is very thin gauge and not very long at all. It doesn’t hurt because you’re putting it in the pinched fatty tissue. It is normal to have slight bruising if you see that. So don’t panic. You’ve got this, gurl!! And that will be one stressor of the table! Keep up the compression socks too, especially if sitting for long periods. Take that med!! By doing so you’re being proactive. ☺️.

As far as the Mayo report and wondering how long you’ll be in remission. Stop worrying about what-ifs! Focus on the today, get through each day one at a time. It’s trite but true. Also, listen to your gut. I know your husband is your caregiver but if you need guidance from your doctor/team between appointments, don’t hesitate. This is you, this is your body and life. So again, be proactive. ☺️
Will you promise to give the blood thinner a try?

Guess I could call on their voicemail line. Although think the weekend one just says go to the ER. Not sure this rises to that level. The days seem just interminable. I could do a crossword but too much sitting as is reading. Because no one can see the internal damage, the expectation is that I am somehow still the same as before. Will try to do it soon. Guess it is easy enough. How long did you have to do it? I expect all through these Revlimid cycles. Hope you have a wonderful day!!!

Actually the DVT came after a long plane ride with too little water and not any walking. Got up only once. I do know what they feel like. Not sure how much worry I have. I was on it a week already before I got this. Yet more drugs with side effects which seems par for the course.

You’re so right. The hardest battles we fight alone are often silent ones. We may look fine on the outside but we’re a world of hurt on the insid

I was on the blood thinner off and on over a year. My first experience was the five weeks in the hospital for chemo with the AML. The final week I was there, the nurse had me self inject so that I’d be fine when sent home with that med to use one more week.
I had to stay on it basically anytime I was bedridden or hospitalized over that next year. It was well tolerated and I didn’t worry about blood clots. It really is easy to self inject. A blood clot is way worse, as you know.

I wonder if your blood counts are falling. That can leave you feeling really ooogie. Listen to your body. If wants rest, do so. You’re fighting against a blood disease so it will make you tired. When you’re tired I swear pain hurts worse. Find something binge worthy for distraction if you can.
Please try the blood thinner today! Do it around the same time daily. If it smarts after put a little ice on it. But you won’t screw it up. It’s only scary the first time. Will you try it now?

At this point you can’t focus on side effects of these powerful drugs. The meds have to be stronger than the cancer. The list of drugs I’ve been on were staggering and potentially lethal. But my husband and I joked about “Better living through chemistry” (my husband is a chemical engineer). I have a newfound respect for big pharma. Without the science, research and drugs I wouldn’t be here. I’m now cancer free and off all my meds. Though you never could have convinced me 3 years ago that I’d ever feel normal again. Will you give the drugs a chance?

@tml, You could call but not sure that a voice mail will be answered until tomorrow. However, you could call to find out if someone is covering on the weekend and a phone number is provided. Peace of mind is certainly worth the call.
I have not had the meds and the side effects you describe, and I am happy that Lori, who has already traveled this journey, is offering the support from her experience.
I know that you are worried about today, tomorrow, and the next days. When I was at endstage liver failure, possible bile duct cancer, and on dialysis for acute kidney failure, my survival secret was that I absolutely had to live for the moment. That could be a brief moment, an hour, or a day. I dared not think about tomorrow and all the things that might be ahead, and made a decision to focus on one positive thing - anything - each day. It became a blessing hunt , and when I began to look for blessings, I found that I could block out some of the negativity and doubts that haunted me. I even began to keep a list. On one dark dreary day, I celebrated a tiny ray of sunshine that popped thru the clouds and it uplifted my mood. Even the the shadows on the ceiling as the wind blew the tree branches in the beam of the street light became my blessing on sleepless nights because I was able to be like a child and let my imagination go wild with the shapes and rhythm of the shadows. Sometimes it even put me to sleep!
I'm getting off topic, But i want you to know that you re not alone. Have you considered beginning a journal that includes blessings that you experience?
I also would encourage you to call your doctor in the morning of you don't get in touch with someone today. He might want to see you before Thursday.
Be easy on yourself. If there is a couch in a sunny window curl up for a nap.
Hugs.

After reading your story I am heartened as you went through so much! I can imagine that it was incredibly difficult and also needing a donor! I do need to think of the positive things instead of wishing myself in the past making different decisions as I am where I am. I will try to do the shot soon. I have tried to list some things I should do to feel better! Get my hair cut perhaps. I do need to focus on what is good. I keep comparing to my first round of medications that were very minimal. I am at this point way luckier thanks my sister in law who had several kidney transplants. She had type 1 diabetes but it was the heart surgery that she did not survive. So many on this site have had huge problems that they have surmounted and I know it can be done. I just need to stop my out if control brain! I will think of all if you now!!!

Never though of doing a journal! Typically me. I now am wondering if my sister in law would have gotten better care or a better outcome at Mayo. Second guessing again!!!

I know dialysis is very hard! Another relative donated a kidney so she was able to get off but she did not have all the other complications that you had!!! Bile duct, liver! What a miracle!!!!

I need to but Darzalex worked so well that if the spot on my rib had been discovered I would not be in this situation and yet I need to let that go. I guess on 4/7 I will know a little. Guess either up, down or the same!!! Hoping for down but guess will have to face whatever it i. Was not going to look at my latest but for some reason gave me a printout with it all and the nurse said he added the ones from the week before! Nice of him but…