Lets Post our Daily Exercise
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Ruth - that picture is jaw dropping! It reminds me of the kinds of snow we would get in New Hampshire when I was a child...and why I moved to Virginia after college!
Karen - keeping you in my prayers. TT
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I met with my hematologist this morning and as I expected, the news is not good. I have multiple myeloma, and he's thinking it's stage 2 (only 3 stages - the description for stage 2 say not stage one and not stage 3!!). We are still waiting on some other test results that will give more information regarding the MM (can't remember how hematologist explained it). It's been a very long stressful two weeks. I have a phone consult with the nurse later this week regarding chemo. I go back on March 27 to start treatment. I'm also waiting for RMCC to call me to schedule a PET scan.
Today, the phlebotomist drew 9 different vials of blood. The CBC was ready before I left, but I just checked the patient portal and there are no labs.
Treatment is 4 different chemo drugs (they are oral and/or injection- no infusion) - Revlimid, Velcade, Daratumumab, Decadron given weekly for 3 weeks then one week off for 4 months. Another bone marrow biopsy at the end of 4 months. Hematologist talked about so many different things after the 4 months that I'm confused about next steps after the 4 months. The hematologist says these drugs are not as hard as the ones I had for breast cancer. I guess time will tell. I worked through BC treatment so if I feel decent, I want to work as it will be a diversion - can't sit home and do nothing if I feel decent. I guess I can decide after the first chemo. It's the Monday of my spring break.
Our son is up to date on the latest information. Now to tell the girls. Younger daughter has 3 more finals, Friday, Sunday and the 24th. Plus she turns 25 on the Sunday (the) 19th. So I want to wait till at least the 24th to tell her. The new semester starts tomorrow or Wednesday. Part of me wonders if its best to wait till I've had my first chemo on the 27th. I'll tell the girls around the same time. I know my son doesn't talk to his sisters often so no worry that he will spill the beans.
Work knows - I shared with the admin at the school I'm covering and they could not be more caring. I've also shared with part of my team there. I still need to tell the rest of the team. I've also shared via email, my 2 managers and the MH manager (who I've worked with since I came to the district in 2009).
I can't believe that I'm going down the cancer road again. So much to absorb.
Thanks for all your love.
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Oh Karen, I am so very sorry that the news turned out to be what you expected. I can't even imagine how you are feeling right now. One of my aunts has MM and is on that 3 week on/one off schedule. She has tolerated it very well & has continued with her regular schedule. Hopefully that will be your experience as well. I think it is smart to wait until the finals are done before telling your DDs. Sending much love your way. 💓💓
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I am so sorry, Karen.
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Yesterday I went to Zumba & Pound. Tonight I'm going to Zumba & Yoga. I'm hosting my Book Club tomorrow night so I am cleaning my house today & starting on my dessert. I looked for a St. Patrick's Day recipe and found one that should taste great even if I mess up the presentation. It's a two layer cake called Irish Cream Celebration Cake. The 'cake' part has a Devil's Food cake mix, chocolate pudding mix, eggs, vegetable oil, Irish Cream liqueur, and sour cream. The frosting has butter, cream cheese, powdered sugar, more Irish cream liqueur. The glaze over that is biittersweet chocolate, whipping cream, corn syrup, vanilla and almonds sprinkled over the top of that. What's not to love?! 😋
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My PET scan is scheduled for next Thursday 03/23. It is not till 3:30 (3pm check in) but nothing but clear water after 9:30am. It's my last day before spring break, but leaning towards taking the whole day off due to fasting. I don't have time to snack at work but I do eat my yogurt, fruit and a muffin for lunch. This Thursday is the phone consult with the chemo nurse. It is at 2:30 and anywhere from 30 minutes to one hour. I was going to do a 3 way call with my DH, but after we wrote down some questions, thinking of leaving work at 2pm.
To be honest, I'm scared beyond scared of the treatment. Hematologist says these chemos are not as hard as the ones for BC, but I had so many side effects, especially horrid nausea - and nausea is a side effect of all 4 drugs. My DH's former PCP is a good friend of ours. He came over this afternoon to talk to DH and he is familiar with all the treatments and was honest saying they are hard. He is a two time cancer survivor so he well understands chemo and radiation. The part that petrifies me is bone marrow transplant following the 4 months of chemo. Hematologist also talked about it, but I'm trying not to go there. Having the PET scan scheduled makes this all the more real.
My son sent me the most beautiful flowers today with the sweetest note. I really have great kids. He was turning17 when I was diagnosed with BC and now he is turning 34. For some reason this strikes me as hard.
I appreciate all the care and support.
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What a beautiful bouquet & note, Karen. My son was 17 also when I was diagnosed with BC. I think as mothers we worry as much about our kids as about ourselves (or more!). Take what time you need from work & don't feel guilty about it! Hopefully they have improved the anti-nausea meds from what was available in 2006. Glad you have a good PCP friend who can help you decipher all the medical information. As much as you can, just take one step at a time. Sending much love your way.
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The flowers are beautiful.
While the tough times don't go away, seeing the beauty of the flowers and the thoughts behind sending them,can hopefully get a 1/4 smile from you...
Take the time you need...I also worked through treatment and after all, no one really appreciated it and it probably made my recovery longer. We are now also older, so take that into consideration as well.
Holding you close, TT
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The Wednesday Walking Women celebrating St. Patrick's Day!
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Karen, I hope the nurse call tomorrow will help you. Love the sweet note your ds sent you along with the flowers. It says it all. Please know we care so much for you and are here for you. I am holding you tightly in my nightly prayers.
About the nausea, I was given Emend to take for it. It's a pill. I remember I only took 1 pill a day for 3 days. Also given something through my port on infusion day (think it was Aloxi). Emend was a godsend.
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Ruth: Did your book club eat all the cake or did they leave you and dh some for tomorrow? It sounds so decadent!
Too windy to walk outside yesterday. Today was a little better so I walked/ran in a delightful 63 degrees.
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Two people couldn't come because of family emergencies, so instead of having 2 pieces left, there's 4. Delicious, but I don't even want to know how many calories!!!!
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Ruth - cake looks yummy but sounds sooo rich
DH and I had dinner with one of our good friends - she too is an MD - she was explaining more about the MM. Scares me even more when experts talk about the treatment and say how long and hard of a road it is!!! My husband's retired PCP/our friend is offered to come look at my labs to I'm going to take him up on his offer. HIs speciality was endocrinology. I scheduled a telehealth appointment with my PCP/NP for tomorrow afternoon. I don't know what she knows about the past 6 months - other than the broken foot, there is nothing new in my patient portal. This afternoon is "chemo teach" with the RN. I have several questions to ask and DH will be with me - it is over the phone. I just need to get to the 27th and get through the first chemo to see how I do. The uncertainty is so hard. I don't remember being so scared with the BC diagnosis. I'm hoping I feel well enough to work during chemo so I have enough time to take first semester off next year. I'm not ready to hand it up. Yes, one day at a time and one foot in front of another.
We have a skiff of snow on the ground - mountains are supposed to get dumped on - Yesterday is was low 70s, today maybe 40!
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And you are sending your weather this way, Karen. Boo!!
I'm glad you have friends with medical background to get feedback from (even if what they say is scary). When I was diagnosed with BC, I consulted with my beloved GP (who sadly has since retired) every step of the way. When I was deciding about getting a hysterectomy, I brought all my reports to my NP friend & got her input. It's good to have people who care about you in your corner.
The cake was delicious & a very small piece is more than enough. I have a couple pieces left & am thinking of who I could share them with!
I went to Pound & walked around the track at the fitness center for awhile. I'm going out to lunch with some friends; so I am packing on the calories this week!
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Karen: Hope you got lots of answers today during your phone "chemo teach" call with the nurse. How wonderful to have friends who are physicians who you can turn to for help. Know that we are always here for you also.
Ruth: Your cake could be in a taste testing contest. Such a pretty picture. Love the WWW picture. Lots of green for St. Paddy!
Walked/ran today. My running is becoming less but I still do it for variety.
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I got a pre-recorded call from my insurance company saying a procedure was approved, but not what the procedure is - so I need to call today. Also wondering how much my chemos will cost. one of them is only available through a special program since it is so toxic. I had to sign several forms to submit before they will allow it for Tx. It's called Revlimid and I take it for 21 days (oral capsule) then off for 7 days. The other chemo drugs are injection into my belly weekly for 16 weeks - Dararumumab and Velcade. 1-3 hours prior to injection I need to take Dexamethazone and 1 hour prior 650mg acetamenaphin and 25 mg Benadryl. I also have to take Acyclovir twice daily for 16 weeks. They've called in anti-nausea drugs - Zofran and Phenergan. We had phone consult for "chemo teach" yesterday and she said the risk of nausea is 10% for these drugs vs 90% for the TAC chemo I had with BC 17 years ago. The first treatment, they keep me for 4 hours to watch for side effects. All the rest, maybe 1 hour total from start to finish. She went over side effects and of course the first one is changes to blood count. Others are GI, skin, diarrhea/constipation, hair thinning and neuropathy. She couldn't answer a couple questions as she said my hematologist would have to answer them. I see him on the 27th before the first treatment, then I think monthly. It's till all overwhelming. We asked a couple questions about next steps aftr done the 16 weeks - second bone marrow biopsy and stem cell transplant - but she really didn't have answers except that I would be referred to a transplant doctor. This is what terrifies me the most. I need to put it in the back of mind mine and just focus on the 16 weeks. One day at a time. One step at a time.
Our internist/endocrinologist friend is coming over later this morning to look at my labs. I wrote my endocrinologist to ask what labs she ordered as I don't need to repeat labs that were done this past week and told her to news of MM. I have a telemedicine appointment with my PCP to see what she knows/what she's received from any of the specialists and she is she knows about the MM. I also need to schedule with nephrologist as PCP was going to follow but really hasn't - not a big deal because the oncologist do the CMP. But since starting chemo, I want to be sure that nephrologist is monitoring kidneys.
My weight is done 2# and I really can't afford to loose anymore weight. I'm eating as much as I can, but I'm not snacking as I'm not hungry - also so busy at work, I'm not at my desk much to snack.
Sorry for ignoring everyone else and being all about me
Have a great Friday.
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Oh my gosh, no wonder your mind is spinning, Karen. You will have to get a separate calendar just to keep track of everything. What about getting some supplemental nutrition shakes or drinks, like Ensure? Or making some of your own? It's an easier way to get some calories in when you are not hungry.
It's cold & icy here so I will probably go walk at the fitness center. Since I have an Irish great-great grandmother, I wish everyone a Happy St. Patrick's Day!
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Yes, Happy St Patrick's Day to all. My grandmother (mother's mother) was first generation Irish. Her father came from Ireland as an 8 year old having "fully finished" school (3rd grade education), alone to meet up with some cousins who had already emigrated from Ireland. Michael Mcguire lived with my mother and family until my mom was 20 y.o. ...so the Irish runs deep for my mom, we are having full Irish for dinner tonight!
Thank you Karen for keeping us informed, we are all sending you hugs. The whirlwind of information and decisions...seems like their should be a better way, but that was it for us with BC and now again.
Went to pilates yesterday and feel it. Off to a yin yoga class at lunch. TT
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When my Irish great-great grandmother was 12, she heard Abraham Lincoln speak! My mom was born the day before her birthday & they share the same name (with different spellings). Since she lived to 100, my mom knew her very well (mom was 16 when GG died). I have a doll quilt she made for my mom when she was a little girl. When I taught I'd bring it to school on St. Patrick's Day, tell the story, and encourage kids to find out about their own family history.
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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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