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The hematology nurse called me yesterday and apologized for taking so long. Still no pathology results on the bone marrow biopsy. She said she would call me as soon as she saw them and if they weren't here today, she would call them. My appointment is Monday morning. So it might be another long week-end. I'm mentally and physically exhausted.
On a positive note, the endocrinologist office called with ultrasound results of my parathyroid - no adenomas on the parathyroid so they will continue to monitor my labs - I'm supposed to go for labs again next week and see her mid April.
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Hello to all. My reason for popping in this morning is to share the following message from the Mods that has been posted on the forum. I want to make sure as many people see it as possible. Please spread the word.
Important update:
We're very close to the launch of our new community forums! The conversations that have been shared here over the past 20 years will be waiting for you in the new forums.
During this migration, which will begin on March 12 and end approximately on March 23, all newly created threads and posts will need to be moved by the mods to the new forum through a manual copy and paste process.
Unfortunately, we can't migrate private messages you send and the threads you favorite during the migration period. Please copy and paste any private messages you'd like to save for yourself in a separate document, and write down any favorites you want to bookmark in the new forums.
We thank you for continuing to be patient with us through this process. We're doing our best to make sure all conversations continue and pick back up where you left off on the new forums very soon!
--The Breastcancer.org Community Moderators
March 9, 2023
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And here is the update to the update from the Mods:
TO BE CLEAR:
The only PMs you should consider saving and the only Favorites you make that you should track are ONLY the PMs you send and receive during the migration period and the threads you favorite during the migration period. The migration period is Sunday 3/12-Wed 3/23.
PMs sent and received prior to 3/12 and threads you Favorited prior to 3/12 will be waiting for you in the new Community.
(my note: If BCO had hired a 3rd grader to do their update, I think it would have been done a lot quicker and more effishiently!)
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Karen, I'm glad you got some results back anyway & they were good. Is our snow coming from you? We had 3-4 inches last night, have a break today & tonight it's supposed to start again. The rest of the weekend calls for heavy snow and wind. Blah! I haven't decided what to do for exercise today (besides shoveling!).
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Thankfully, snow is not in our forecast. 10 day forecast looks good. Stay safe and stay warm.
Hematology nurse called about an hour ago - still waiting on more results from the bone marrow biopsy - she expects that they will have them for my Monday morning appointment. Not feeling very positive.
My brain is fried and don't want to focus on anything like reading. I generally check emails on Fridays and write my weekly update that my team does, but going to skip it this week.
Foot is still swollen on the bottom near the toes, but ever so slightly less swollen on the top, so will keep wearing the boot. Spring break is in 2 weeks - last week of March. I will wait till then to make an appointment with the Podiatrist if it is still swollen.
I got a sneak peek at the new boards and they look good. Hopefully they will be easier to navigare.
Have a good week-end.
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Karen, maybe watch some funny movies and/or some comedy series that will take your mind off things. If you get Netflex, the old Mary Tyler Moore shows are there.....when I was doing chemo, I got DVDs of all 7 seasons & they were a wonderful distraction, so when I saw they were back on Netflex, I've started watching them again & they are still great. Old Johnny Carson shows are good too, as are many of the British mystery series; Vera, Death in Paradise, Midsommer Murders, Endeavor, Father Brown are some we started watching during Covid & really enjoy.
I shoveled quite a bit & did a 30 minute Dance Mix with Denise Austin.
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Shoveled, did a 45 minute Denise Austin toning DVD & took a Snow Walk with DH and Bruno.
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Thank you for the great photo Ruth!
We just went for a walk out, but we stuck to the muddy road rather than get the snowshoes out. It is absolutely gorgeous out, with bluebird sky and mid-40s. Possibly a big storm coming, but even if we get laess total snow the snow: water ratio is expected to be 1:6!
Karen: Thinking of you and holding you in my heart.
Going to do a wee bit of strength training now.
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Yoga today & walked around the track at the fitness center for awhile.
Thinking of you, Karen.
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Karen: Lots of hugs and love coming to you.
YesIAm: Sounds like a beautiful day (except for the mud part).
Ruth: That picture!
I walked yesterday. We went to my favorite restaurant last night. I drank 2 glasses of wine and today I've had "wine belly." Feeling better now. Guess I can't handle alcohol like I used to be able to! It's been a rainy day - a good type of day to do nothing.
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I do not like the time change - and this might be the last one. There is the possibility that we will stay on DST year round. Me personally would prefer standard time. Heard on the news yesterday that standard time is healthier for our bodies - but I don't need daylight till 9 at night in the summer. It always takes me an hour to adjust to the time change.
2.25 hours till check in for my appointment - I go between being numb and being panicked and scared out of my mind. I truly expect to be told that it is cancer again. Okay, if so, just tell me what the plan is going forward. Multiple myeloma is not good being a blood cancer of the plasma - but then no cancer is good, some just worse than others. I scheduled to go into work after my appointment - wonder if that is dumb - but I need to be busy and work has been so understanding. Plus being busy at work is a distraction. I guess I can change my mind if need be depending on the news and what we find out moving forward.
DD#2 texted that she go a 90 on her final yesterday!! She was elated. She has 3 more finals - Thursday, Sunday (her 25th birthday) and the last is the 24th. I think the new semester starts this week. The trip to Italy was her birthday present, but I think I'm going to order some sort of birthday treat to be delivered on her birthday. Also she wants a new swatch, so I'm going to tell her to order it. She is not expecting anything, but it will make me feel better to surprise her.
Not sleeping well - worse than normal. Waking up for a couple hours at night - I come out to the sofa and many nights stuff my face!!! Not really hungry, just nervous energy, frustration, boredom - I don't know what, but it has to stop.
I'll try to come back this evening to post an update
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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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