Mar 18, 2023 02:27PM rahrah2023 wrote:

Chemo treatment 3/17/2023. Walked 4 miles 3/18/2023, walking clears my head of negative thoughts. Blast music the whole time.

Mar 19, 2023 08:44AM karen1956 wrote:

Thanks everyone. My sleep is awful!!! Two hour on and off. Last night got up 45 minutes after getting into bed and came out to the sofa - snack and fell asleep and went to bed, slept for 2 more hours then up every half hour. Managed to stay in bed till 5:45

Got my labs back from Friday - My PTH rose 50 or 60 points (parathyroid) way out of normal limits - this over less than 4 weeks. And my calcium is inching up higher. Sure hoping the endocrinologist calls me tomorrow. Our friend who is the endo came over Friday morning and was recommending some more digging based on the previous results. I'm going to mention the tests to my Endocrinologist when we talk next which I sure hope is this week and not at my appointment next month. Updated my primary care on Friday. Need to get back into the Nephrologist. How many specialists can one have!!!

Today is youngest's 25th birthday. She got the chocolate pretzels/candy tray we sent and seemed really happy. She has a final this afternoon and one more on Friday. We are going to tell DD#1 this afternoon - and DD#2 and her DH this afternoon. Then make sure when she talks to her sister that she doesn't bring it up as sometimes the girls talk Friday before DD#2 calls up. It will be such a relief when they all know. DS is coming over this afternoon and will stay for dinner.

It's going to be a long, long week. I just want to get to March 27th. Not scared of the PET/CT scan, but of what it might tell. Insurance pre-approved the scan. I'm a wreck. I have a medicare advantage plan, it is through the state retirement system and as a result it is a good plan.

Have a good Sunday.

Mar 20, 2023 12:26AM karen1956 wrote:

Ruth - I took sleeping pills during breast cancer treatment and for several years after. I think I stopped for a time after I stopped the AIs. I have been taking them again since 2015. And I still sleep lousy. I was on Ambien for years and now I take Temazepam. Some nights I have trouble falling asleep, others not - then waking up at night varies as well. Very inconsistent. What is consistent is that even on good nights sleep, I'm awake after 5 1/2 or 6 hours sleep. My aresnal of Rx is going to grow significantly once I start treatment as well as required over the counter pre-meds.

This whole Multiple Myeloma is a lot to process. So many unknowns. The first part of treatment is called "induction therapy" - 16 weeks of chemo. I'll be getting the gold standard of care. Each chemo is in a different category. We need to learn more about phase 2 - when the bone marrow biopsy will be post chemo and when the stem cell transplant occurs. Like stage 4 BC, there is no cure for Myeloma - hope for a good response to treatment and a long time before relapse. The hematologist gave us a booklet from the LLS on Myeloma and it is so much to absorb. The count down is on. T minus 7 from tomorrow!! I just want to get the show on the road.

I have my PET/CT scan on Thursday and I need to fast after 9:30am - only plain water. I was going to take the day off, but decided I'd do better if I was busy so I'm going to go into work. Yes, I know I'm nuts! but I can always change my mind.

We told our DD#1 and SIL. Needless to say they were in shock. I'm sure they are still processing. Son came over for dinner tonight and we talked at dinner. After dinner I gave him the Myeloma book and after a couple minutes he said his head was spinning and put it down. It is just all so overwhelming. We will tell DD#2 Friday morning our time (afternoon her time) - she will be done with finals. I dread telling her the most as she always worries about my health. Cancer coming back is a big fear for her.

Today was DD#2 25th birthday. When we called to wish her a happy birthday she was in tears because her final is so hard. It hurts to see your kids hurt. She was having a few close friends over for ice cream. Her roommate heard her crying and asked if she wanted to cancel ice cream and DD#2 said NO she didn't want to cry all night. She talked later on in the day and she was doing better and smiling. She also sounded good when she talked to her brother. Actually we face timed. She has a great sense of humor. When she was flying home from Italy, she told me there was an "old B" sitting next to her - and I made a comment about being old. She was joking with me about it this afternoon and said she should have told me that I'm not old (implying I"m a B as a joke). We do joke about our ages - most of her friends parents are 12-15 years younger than my DH and I. When she was 16 and at sleep away camp - some of her friends were talking about their mother's turning 40 and DD#2 and another girl said, "we didn't know our mother's at 42"!! I had her the same age as my mother when she was empty nest. DD#2 made our family complete.

Sweet dreams.

Mar 20, 2023 10:50PM wonderland wrote:

Karen: I know you're so ready to get going on treatments. Wanted to let you know that I used Ativan during mine. Love my Ativan! Really took the edge off and stopped me from going too deep into dark places in my mind. I slipped one pill under my tongue a little bit before I went to bed. I fell quickly to sleep. Just letting you know what got me through.

Welcome rahrah! Glad you found us.

Ruth: I can't believe how much snow you've had. All I wanted was one! Spring is all over the place here. Our dogwoods are just starting, the redbuds are blooming, daffodils everywhere, etc. But with Spring and all her beauty is also pollen! And red itchy eyes!

Walked/ran today. Temperature nice and cool in the lower 50s.

Mar 21, 2023 10:29AM ruthbru wrote:

I'm glad you are working with good-hearted people, Karen. I had the same experience & that helped a lot. Could you send out a group email to your team? With my principal's okay, that's how I told the teachers at my school (except those who were also personal friends). I just couldn't explain things over & over; but if it wasn't addressed people would be speculating & not know if they should say anything to me or not. I also sent out occasional updates that way. Yes, when you think of things that would help, let them know. People really do want to help out so it's a win/win situation. What a nice gesture from the police department. DS can enjoy the food & you can enjoy the ladle. If I lived closer I would make you some soup so you could use it (although you would have to tell me what kind of soups are kosher!).

I went to Pound this morning. It's supposed to start snowing this afternoon (sigh) and we are in another (expletive deleted) winter storm watch throughout the night. If things are still open by evening, I will go to Zumba & maybe Yoga.