Lets Post our Daily Exercise
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At yoga today everyone was telling the stories of being Irish or playing Irish today... and the teacher had all these Irish sayings and blessings that she sprinkled throughout the class.
It really is a privilege to know ones family history, good and bad, and many people don't.
I know mine for many generations (100s of years on some paths) on both sides and really feel blessed that some of my ancestors were writers and wrote family histories.
As an aside, I love the PBS program "Finding Your Roots" with Harvard Prof Henry Louis Gates, Jr. I always learn so much.
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I love that show so much!
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Oh Karen I am so sorry to hear your news. My Father in Law was on Revlemid for MDS, and he was much older than you and he tolerated it without trouble. I hope these anecdotes help. I have several friends in my Cancer Recovery through Rowing group who have had stem cell transplants and it is much much less horrible than it used to be. They are all living normal lives! I am sending all my warmest wishes and hopes that your treatment is smooth as can be and fully successful!
Trm: Where in NH? I am on the other side of the river in Vermont, but cross the bridge frequently. We just had one of those old-fashioned storms, right down to the forecasts being way off! It was a 6:1 snow to water ratio so unbelievably dense, too. I gave up on even estimating totals, just said "we got a sh!t-ton" but across the river in Plainfield they got 32". I do love the snow, though my back still hurts from the last dump we got. I do love the snow, though.
Ruth: wrap that cake well and freeze it and bring it out for a special occasion!
I died my hair green for yesterday, but already washed it out. I have the great good fortune of having stood on my ancestors' graves in Fuerty, Roscommon. I love Roscommon. My grandma's family were from Dublin, but I've never spent much time there. It is so nice to know the family stories.
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Exercise today is 4 loads of laundry, stripping and making beds, and grocery shopping at two stores...which is actually my normal Saturday routine.
My family had a house in a small village east of Hopkinton NH...which is 10 miles east of the capital Concord. Rt 89 which goes from Concord into VT and then through to Canada was the lifeblood of the region when built in the 60's for the Montreal Expo in '67. It made day trips to Hanover and over to Quechee Gorge doable and expanded our universe.
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The cake is gone! I gave DH a big piece & took the rest of it with me when I went out to lunch with friends (we ate at a little local cafe where they were fine if you brought your own dessert.....as long as you ordered your lunch there, of course).
I went to Yoga Strength this morning. The highways in the state are just opening after being shut down again because of the weather. With this last storm, everything was covered with a sheet of ice. A good friend of mine who lives in the SE part of the state has still not been able to see her 1st grandchild who was born March 3rd. Her son & wife live in the NW corner of the state & it's stormed every weekend since he's been born! It has been a heck of a winter!
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Chemo treatment 3/17/2023. Walked 4 miles 3/18/2023, walking clears my head of negative thoughts. Blast music the whole time.
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Welcome, rahrah! Good for you for your 4 mile walk! I walked like crazy during chemo, which helped me so much both physically and mentally.
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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.
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Thinking of you today, Karen. Would you be open to prescription sleeping pills? I took them after my BC diagnosis. Like you, I was getting no sleep at all & I needed to get some restful sleep to be able to coup with everything. They REALLY helped me.
I will go to Yoga. It is supposed to be a 'balmy' 30 degrees this afternoon, so maybe I will go on the Dog Walk with DH & Bruno.
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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.
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I have a bunch of relaxation, meditation, hypnoses CDs, that I play ever night to help me fall asleep & go back to sleep when I wake up during the night (which I do at least several times). They are somewhat helpful to me. Too bad we aren't backyard neighbors, Karen. We could put on our deck lights in the middle of the night & if the other one was up at the same time, we could get together & commiserate!
I'm an older than average mother too. If I had had a baby at 19, I could be the mother of DS's fiance! I'm the same age as her grandparents!! I don't feel (and I hope I don't act) my age!
I went to Zumba this morning & may go to Pound tonight. I ordered a couple new interactive puzzles (he has to figure out how to open doors/windows etc.that have treats behind them) for Bruno since the weather is precluding him having as much time outside as he'd/we'd like. More snow is predicted for tomorrow into Wednesday. No spring in sight around here!
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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.
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Wonder - I took Ativan the first time around. Both for nausea and anxiety. I'm on Xanax for several years now. The new/young psychiatrists don't like Benzos!!! Mine was going to start weening me off but now with the MM diagnosis, she said, I'm not going to take your meds away!
Ruth - yes, too bad we aren't closer. Your son's fiance must be young!! I was talking to an ECE teacher yesterday and she is 41 - her mother is 4 years younger than me!! Till this, I wasn't feeling old and hoping treatment doesn't age me too much.
I miss my Gilda Radner hair. Need to get my haircut - I think it's been 6 months and its not looking nice anymore.
Insurance is driving me cray - My Revlimid need to be pre-approved and thankfully it was. It is being filled at a specialty pharmacy not my Optum mail order. The retail cost for one month of it is over 18K. Thankfully, my UHC Medicare Advantage is a good policy and my co-pay is only $75. Co-pay for each of the chemo drugs is $75 so $225/month for the three plus probably another $100 for all the other. The Velcade retail is about $7K and the Darasumumub)?) is only retail $700. Insurance denied the Promethazine saying it is not FDA approved for nausea from chemo and considered high risk for those over 65!!! I can buy it out of pocket, but want to see what oncologist office offers for an alternative in addition to the Zofran. Just the 16 weeks of chemo will be over $80K retail. I get text and emails from Optum Rx, so I ind myself checking with up on things. I shouldn't have to do that - but I don't want to let anything go to chance. I'm very worried about the cap on Rx - I don't know if my total out of pocket spending includes Rx - but there is no way I can afford 25K/month if insurance has a limit.
My work is amazing. yesterday I was meeting with one of admin early in the morning about a student and made a comment about feeling overwhelmed etc and she asked if I wanted to be at work or go home. When I told her I was looking into changing chemo to Tuesdays and why - she was like "don't worry about us". I'm at the school M-Th and the SP intern T-F and I said one reason looking to change is so I could be there Monday and the other reason was only working 2 days in a row - M, W,Th with chemo on Tuesday. I feel so fortunate as the principal I worked for 17 years ago was a Queen B. In the fall at the start of the new school year, she told me that they "got the short end of the stick" when I was out. I wanted to rip open my shirt and say who got the short end of the stick. From then on, she made my life miserable. I still need to tell my Float teammates about what is going on but I don't know how. Yesterday I had book study and we are all on the float team (about 1/2 the team) and I couldn't bring myself anything but I could feel myself feeling quite angry in my body.
T-6 and still so many questions. I still have lots of questions about the CST. I they harvest them from throughout the body - right now it is all so much to absorb. I want to know how soon the Bone Marrow Biopsy is after the induction chemo and how long after that is SCT. Generalities are fine but I want to be able to have some idea - to be able to plan a little. this unknown/uncertainty is driving me crazy. Feeling very vulnerable and pessimistic at times - just want to get the show on the road.
My husband has been volunteering with our local police department, helping with trainings for about 6 months. He called them yesterday to let them know he wasn't sure if/when he could help and before the end of the day, we got a beautiful gift box from his family at the department. Unfortunately, it's not kosher so my son will take it (he doesn't keep kosher). Soup, rolls and cookies and a beautiful ladle. My school wants to know what they can do to help, but unfortunately, I don't know at this point, but I will let them do something.
Going to be 60 today - but anymore I'm always cold. I keep the space heater on in my office and layer.
I've not proofread my post so hopefully everything makes sense.
Have a great Tuesday.
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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.
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Here's a 'First Day of Spring' picture from a town about 30 miles from where I live!
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Ruth - that is a LOT of snow!! The mountains here are getting hammered, but thankfully not in Denver
Endocrinologist office called yesterday - yup, she says, it is hyperparathyroidism - yes, I've known that for a coupe years, but hematologist was questioning it. Ultrasound of parathyroid/thyroid was normal 2 weeks ago. This part Friday had labs for Calcium and PTH - Calcium rose slightly but big jump in PTH - so now she is ordering CT of neck!! I'm really going to glow soon.
Received 3 of my Rx for treatment - all pre-meds - 2 of 3 chemo drugs have been pre-authorized - wrote the hematologist's nurse last night to ask her where those meds are being delivered/if I'm responsible for getting them. My mail order pharmacy sends me texts to let me know status. Just want to have everything ready for Monday to get the show on the road.
My SIL texted me this morning asking how I was doing and thinking of me and praying a lot. Hard to answer, tried to be honest, yet positive. He is a great guy.
Thankfully work is super busy, non stop non-stop most of the day and it is a great distraction. When I get home, it's hard as too much time to think. Having knots in my stomach - like I've been punched in the gut - taking Pepcid AC twice/day but it still hurts - eating but not really hungry. I'm loosing weight and trust me, I have no extra weight to spare. It scares me as I haven't even started chemo. I force myself to eat but I'm not snacking and that is something I generally did. Primary care tells me what to eat with calories, but it's hard to eat if not hungry.
Told one of my good friends at work yesterday - we are on the same central team of school psychologists and she is the one who takes care of our float placements - we've been on the same team for 5 or 6 years and she was my mentee her first year. She is the same age as my son, but I don't feel the age difference (I'm twice her age). I haven't decided if I want to tell the rest of the team - we are 11 or so people - I've known all but two for several years. I felt it was important to let my school team know since I've had so many appointments as well as my managers/supervisors but really don't know how far I want to reach in telling other SPs - I've known many of my SP friends for a number of years and we are close, but we don't really socialize outside of work. If I tell the float team, I don't know if I want to email or have Libby tell them. I told her I needed to think about it. I won't be at our April meeting but that is because it's the last day of Passover not due to treatment.
Thanks everyone.
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Thinking of you, Karen. Waiting is so, so hard.
We got 4 more inches of snow last night. Schools had a late start (2 hours) as did our fitness center. Here's a picture of those of us who got dug out by 10 so we could walk (we walked inside but took the picture outside). At least the temperature is mild and it's not windy!
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Karen: I'll be thinking about you all day tomorrow with your MRI. Monday will be here before you know it.
Ruth: As always, a great WWW picture. I just want to get my hands into the snow!
No formal exercise today. It's been drizzly and chilly. I visited a friend in the afternoon.
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I spoke with a "match" this afternoon who is both a BC and Multiple Myeloma survivor. She is 15 years BC and 10 years MM. She was very positive but it's hard for me to be there yet. It's still so much to absorb. I will be on some sort of treatment for the rest of my life. PET/CT scan is tomorrow afternoon at 3:30 and I have to fast, water only after 9:30am.
School shooting in my district this morning. Student shot two staff members. On the news all day and even NBC news. I covered at this school 5 years ago for spring semester. The amount of school violence is unbelievable. My husband worries about me whenever he hears anything like this. I'm mostly in elementary schools, but as a float I have done middle and high school coverage. My husband said this afternoon, he hopes they keep me out of high schools.
Waiting for the neck CT to be scheduled. Tired of appointments and lots to come. Trying to figure out the best way to make a calendar or spreadsheet for meds. What to take when. I do have several pill holders. I already use 2 for the Rx I currently take. Now I'm adding several more - some taking every day or twice/day for the 16 weeks, some are just day of weekly injections. And the chemo drug I take at home is 21 days on and 7 days off - I told someone just like birth control pills - not sure why I thought of this analogy as I have used them in decades.
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Karen, I saw the news about the shooting. The very sad thing is that I am not even shocked anymore. I fear we are leaving a pretty horrible world for our kids.......I did a google search & both Dairy Queen ice cream & Ensure are kosher. Maybe you should consider adding both to your diet for the calories!
I went to Pound & will go back to Dance2fit tonight.
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I saw the news yesterday re the Denver school shooting and thought of you. It is becoming too common. We have had two shooting incidents across the street from my school (so not reported as AT my school) as the college bar scene closes (2a.m.) over the past two months...since all of this happens less than 100 yards from my office it is too close for comfort!
It is comforting that you found a match.
This week has been so busy, last week was spring break, that between school and making sure I have time for my mother, I have had to cancel out of my exercise classes Tuesday and Wednesday...just walking and walking. Hope to get back to the gym tomorrow...off now to walk across campus! TT
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Karen: how amazing that you found a match. Hopefully she will be a great resource for you. Immediately thought of you when I heard about the school shooting. Sickening.
TT: Yikes about the shooting so close to your office. So scary.
Walked/ran today. 75 degrees. Will need to mow again soon.
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My team got an email yesterday asking if we wanted to be put on the alert list when notices go out. Of course I sent my information - I can always change my mind.
The world (actually the US) has become a scary place. They interviewed 3 teachers on the news who work in another school district and were on spring break. They all talked about how this is not what they signed up for and were thinking of leaving teaching. It made me wonder if I'm nuts for wanting to keep working when I have cancer again. But I'm not ready to stop and as many shootings as they are - most schools are safe most of the time. When I made a comment about elementary schools, feeling safer it was in regards to less likely being a student shooting vs middle and high school. I have to have something to think positive as the job is so stressful to begin with. The SW and SPs in my district are stretch so thin with seeing kids, special ed, responding to behavior calls etc. I haven't done much paperwork in the past 5 weeks. I need to catch up over spring break.
We spoke to DD#2 earlier this morning. DH and I were both on face time and the first think she asked was "is everything okay"? It broke our hearts. She was crying and so worried and scared. She was planning on staying in Israel for Passover and asked if she could come home. Of course we said yes. I also said I don't want the visit to mess up with school. She said she was going to tell friends and I told her she can tell anyone she wants, even on of her bff's mom who she is she knows well and is a nurse.
DD#2 called me back about an hour ago and she sounded good. She had questions and had told one of her bff and I forget what her friend said was funny - something I said. When I told DD#2 I would be on medicine for the rest of my life, she didn't think it was a big deal. She takes meds, my husband takes heart meds so to her it's normal. It made feel so much better. Lastly, she texted me a photo of a shot of single malt scotch with the bottle behind it and wished me a good Shabbat. I love that kid.
For me saying I wasn't sure I wanted to share with many people, I saw someone in the parking lot at the grocery store and she commented that my husband and I don't age. She asked jokingly who our PS was and I said he did my boobs (she knew I had BC) and then she said I'm doing good right? For someone strange reason, I said no and told her about the MM. My husband can't quite figure me out. But I told this person not to tell anyone and she says she's become a hermit and I said so are we, but let's get together for drinks. We've been acquaintances for 30+ years.
DD#1, when I told her about DD#2, she said I haven't cried yet, but I'm worried too. I just want to be a support for my sister. I texted DS about the PET/CT scan results and the way I worried it, he had lots of questions. I said favorable no surprises. I can tell that he too is really worried. I really do have wonderful, caring loving children.
The hematologist's nurse called around 9 with PET/CT scan results. They were good - no bad news on them. What a relief. I asked what time is best to take the oral drug and she asked the doctor and he said at bed since it can make people tired. So that was one of my concerns. So for the moment, I'm feeling a little bit positive - but I'm sure that will change throughout the day. Waiting on the courier to deliver the oral chemo. They said between 9 and 1.
Well, I best get busy if I want to get anything done today. It's already after 11:00 and other than the grocery store, I haven't done anything in the house.
Have a good Friday.
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Glad about the test results, Karen! I think it's better when the people important to you (both in your personal life & work life) know what's going on. Otherwise you are walking on egg shells trying not to talk about things and, if they have any inkling that something is wrong, they are walking on eggshells too wondering if they should say anything or not. A lady I know from exercise class & school (she is in her 70s & used to sub) is about 6 months ahead of you in a MM diagnosis. She came to class last night and announced that she is in remission & is switching to a maintenance regimen. She is so excited & so are we all!
2 friends & I met up at the fitness center and walked for an hour this morning. Cold, snowy, but sunny & not windy; so I guess we are making some progress in the weather department anyway.
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Karen: Your children love and care about you so much. It's great that they worry about not only you, but also each other. Yay on your PET results!
Ruth: One day you will see the green that is under all that white.
Walked/ran yesterday and today. Both days the temperature has been in the 80s.
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I went to Yoga Strength today & we had a substitute who was amazing! Then another retired teacher friend & I had lunch with an old colleague who is still teaching & having terrible, frustrating year (it's not the kids who are the problem). She just needed to vent; so mostly we listened for two hours (and were glad to be retired!). Since then we've been babysitting the dog pack as DS & fiance are visiting her family (which they haven't been able to do since there's been a storm every weekend!). I think the dogs have tired themselves out as they are all sleeping at the moment.....
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I kinda want to go to your house and ring the doorbell to set off all the dogs!
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Starting to really stress about Monday - about 36 hours till I start treatment. I read all the information on Revlimid and it scared it scares me. But just want to get the show on the road. Have a few questions for the hematologist. DH said he asked at last appointment if we wanted to meet the transplant oncologist. I don't remember this, The reason to have DH with me. Yes, I want to meet with the transplant doctor sooner than later. I want to know timelines - when is bone marrow biopsy after finishing induction chemo and how long after that is the stem cell transplant. Life as I know it now will never be the same.
Sweet dreams
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Thinking of you , Karen. The sooner it starts, the sooner you will be through the worst of it. We are with you in our thoughts & in our prayers.
Alice, you would have enjoyed the din if you had rung the doorbell. DS & fiance were back by 10 pm; by that time everyone was tired out, especially the humans! We are invited to brunch today as a 'thank you for babysitting'. I am going to try out a Pound/Barre class this evening. I usually like to be home Sunday night, but this sounds interesting.
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I had one of my very close girlfriend for dinner. We were talking about treatment etc and she asked what would be wrong if I had to retire? I told her I wanted it to be on my terms, my choice - she got it. The look on her face when we were talking about stem cell transplant - wow - she is an anesthesiologist so she knows medicine. Right now, I can't go there beyond is it a given and if so when after finishing chemo. 10 hours till I start treatment and my life changes even more than it did with BC - 17 years older and not nearly as healthy - so many more things going on. MY gf says that they are all related but I need her to explain more. She will check on us tomorrow.
I'm in a weird space right now. DH and I were going to tell our brothers tomorrow and not I'm not sure I want to tell anyone else including our brothers. I know I should, but....
DD#2 is coming home for Passover - she bought a ticket last night and got a great price and we talked this morning. She asked if we wanted her to come home and I told her she needed to do what made her feel best and that we would never tell her not to come home - so she said I guess I'm coming. I know she is so worried. She will miss one day of classes. It will be nice to have her here. She was going to go to one of her friend's houses for the first part of Passover and my gf who was here tonight for the end.
Well, it's late. I should probably go to bed shortly. I will update tomorrow sometime.
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