Choices

Sadiej

Morning ladies!

Marla looks like you have some serious competition in the joke department LOL. Both of you have left me in the dust so I will continue to enjoy the entertainment. :-)

Claoh I really have not considered hospice. I realize that on a 6 to 36 months timeline that things can happen which could change how I felt about it. But I am also trying to be protective of Donnie. I don't know what kind of reaction I would get out of him. I try to make sure that he can still hold hope. It is hard on him and he worries about me quite a bit. I wish somehow that there was a way that I could take all of that away from him. Our love for each other is so deep I couldn't even imagine what that would do to him if things took a turn for the worse. My daughter seems to be handling it a little bit better than he is, as she puts it she started the grieving process 6 months ago. Are you planning on visiting your family over the holidays? For myself I am being cautiously optimistic and trying to make sure that I don't become overly tired. There's healing in all of this too. I have a brother I have not spoken to in years suddenly want to spend time with me. He's a bit of a recluse so I know that it's hard on him also and yet there is nothing so important in our lives as our families.

Last night was pretty rough on me. I started calling it the longest night EVER. I woke up at midnight, 1:00 a.m., 2:00 a.m., 3:00 a.m. etc etc. I just could not get comfortable and was in a LOT of back pain. I still am. I'm doing my pain meds but it just seems that it's barely touching it. I have to run over to the hospital today to get labs done and then I will probably just go find a corner somewhere to curl up in and go to sleep LOL. My contractor is coming in today also to put up another railing on the basement steps as well as a grab rail at the top. I have gotten a little gun shy about stairs ever since that fall. The bruises on my back are slowly healing and they're now turning more into a light purple than the dark red of the past few weeks. I dunno Claoh... Maybe we should wrap ourselves in bubble wrap LOL.

Lovesprimes I thought that was really cool how you found a community center that allows you to make jewelry for those that are going through cancer. I think I will mention that to Cleveland the next time I'm out there. We have art boards and coloring and things like that for the families while they wait but I think the gift of giving like what you mentioned would be one more item that should be considered. I was surprised to hear that you had to wait so long for reconstruction surgery. I pray that they take care of this for you before the end of the year so you don't have to start at ground zero on your health insurance again. I was curious as to whether or not they left a flap of skin for your reconstruction? I did just a little bit of studying on this a few months ago but I think that we can glean more information from someone like you that is going through it then all my Merck manuals. :) Did they say anything about drains or cushions?

Marla you're being mighty quiet. Is everything okay with you? I'm waiting for you to tell us that you're going to be a speaker at your community center. 👍 I can see where that kind of information is really needed everywhere. Are you going to visit your great granddaughter after this? There's nothing as magical as baby's first Christmas! :-)

Hr_againsttheflow how is your mom doing? I totally get what you're saying about cancer. My daughter and I have that same type of closeness of relationship. She lives down in Georgia so my husband and I have put our house up here in Pennsylvania on the market so that we can move down there to be closer to her. Both my husband and I miss her dearly.

Well it looks like I just got hit with a giant wave of nausea out of the blue. So I'm going to cut this short and wish all of you peace and a very blessed day.

Hugs!

claoh

Good morning gals

Sadie, so sorry to hear about the pain you're going through. What can be done when the pain meds don't do their job? Also, hope you can visit with your brother. How far away does he live?

Loves, do you live in central Florida? Your center sounds wonderful. And it's also wonderful you have your daughter to share close time with.

Just got off the computer to reserve hotel rooms with my son when they come to visit. As we're about 90 minutes away from the airport, we decided to spend the night in that area, and go to the ICE show the next day, rather than drive here and then back.

Both my older sons and their families are visiting us here this month so that will be extra special. Won't be at the same time though as their schedules didn't match.

On a whim yesterday I did call the office of a surgeon to look at the ulcerated tumor and consider if anything can be done. They jumped right on it and are going to get my records and set up an appointment. It was almost TOO quick!! Now I am double guessing my decision. Not sure I would chose to have a mastectomy at this time as I would hate to cause a larger wound than I already have. Never hurts to get input, but for some reason it does make me nervous.

On that front, the tumor has started oozing a bit so that has also gone up a notch in care. Nurse hasn't seen it yet, but I sent her a text we need to address it.

I'm also at the point where I need to make out that list of who to start sharing with about my circumstance. I'm dropping out of some sport options just saying, "not feeling it right now" , but it's not going to come back, so need to be more specific. When the chaplain asked why I wasn't sharing the news with others, my first statement was "I know there will be several who will think I made the wrong choice." Perhaps I'm wrong, we'll see.

Take care

marlakeeth

https://csn.cancer.org/discussion/comment/1710891#Comment_1710891

Hi there all of you lovely ladies!

I am so glad that we have a few new people to join in our conversations. As for me, everything seems to be going well with the Taxol. Had my second dose last Wednesday. Just seem to be and feel shaky the two days afterward. Still do not have much energy, run out of breath just getting dressed. Had one bout of nausea and diarrhea after the treatment on last Wednesday. But that is gone now. Also my taste buds seem to be working somewhat which is nice again. Still have low pelvic pain like mild cramps now and then. Do not know what that is all about. Any ideas?

My neighbor has been getting a new roof for the past 4 days and they have not even started the shingles yet. Right outside my bedroom window!!!! All of the scraping and pounding makes it hard to rest.

Lovesprimes, can you share your journey with us please?

marlakeeth

https://csn.cancer.org/discussion/comment/1710990#Comment_1710990

Love your joke! Giving me a run for my money! Can you explain what your plan is since you posted that you were 4 weeks out from reconstruction? and then mastectomy? thank you for sharing. It seems that everyone has a different treatment plan. Thanks

LovesPrimes

@marlakeeth I was diagnosed March of this year (age 52, ER/PR+,HER2-) and had surgery in May (bilateral mastectomy, three lymph nodes removed, tissue expanders placed). They determined I didn't need chemo or radiation and I started my 5-10 years of meds about 4 weeks after that surgery. At first it was Tamoxifen but the side effects were crushing me. I had oophorectomy done Sept. 1st (laparoscopically) and then was able to switch to anastrozole. Still dealing with side effects but so much better than the Tamoxifen. My surgery in May was a really long one (yet still outpatient) and they didn't want to do reconstruction until we knew if it had spread to lymph nodes (it had not) and whether I needed chemo/radiation (I didn't). I wanted to do the reconstruction in October because I was eligible then to go out on another disability but the surgeon's schedule had filled up and I'm lucky to be able to get it done while it is still 2023. Yet, I also know three surgeries in less than 8 months is a LOT. And I've chosen to do the DIEP surgery where they take abdominal tissue for the reconstruction. I will be in the hospital for 3-5 days and on disability for 8 weeks. I'm told this is harder to recover from than the mastectomy, which is hard to fathom. And 50% of DIEP patients require at least one revision surgery but that should be easier to recover from. Please let me know if there is anything else you'd like to know!

@claoh, yes we live in Central Florida but we're originally from the West coast and lived several years in the Midwest, then the South, before coming here less than 3 years ago. With all that I have gone through, I hold onto Isaiah 55:11 which I paraphrase simply as "God wastes nothing". If I had received my diagnosis where we were living before and with that work situation, things would be infinitely more difficult and I would not have access to the tremendous resources we have here or the ability to take time off. One of my favorite teachers/authors is Lisa TerKeurst and I remember her saying that maturity involves being able to hold joy in one hand and sorrow in the other simultaneously. I have been thinking about that a lot lately.

Well, I'm getting weepy now so it's time to end with another Christmas joke:

Why was the snowman looking through the carrots?

--He was picking his nose!

claoh

Good chuckle on your joke Love!!

It is wonderful to have new voices in our sharing.

Nurse did come today and did have discussions about wound. I am experimenting with different "sandwich" patch concoctions using some pads on hand. My favorite is regular gauze between two layers non stick pads. That seems to give it good absorbency. The nurse said she'd come once or twice a week, but I know I will change this much more than that - probably six or more times a day! I don't tape the patch down, just put it between the tumor and bra. Seems to hold well.

Did tell one new person in community today and she gave me "the look" I'm expecting a lot when I say I am not doing chemo, radiation. In end, she was supportive and as always I asked her not to share with anyone else as I have a sort of schedule I'm leaking out the news.

Take care all, and look forward to hearing from each of you on this journey. Your guys are my rock of support.

Sadiej

Morning ladies!

Claoh I just have so many thoughts running through my head that I can't quite get them sorted out enough to actually put it down and have it make sense. Did I tell you that the other day I was looking for a shirt for you? I wanted a shirt that had the pink ribbon and then in big bold words it said MY CHOICE. Needless to say I never did find one LOL but it also brings up concerns I have for you about the possibility of being railroaded by your surgeon as well as others. I had someone tell me once that "values" were something that someone else put on others so they conformed to their way of thinking. In all that, they only become frustrated because you can't see their point of view, which to them is obvious. Your surgeon has already discussed radiation with you as if that was the only choice. Others may look at you and not understand how you couldn't see that their choice would be a much better one. How do you explain to someone that those choices have already been made? My choice was to take a break from chemo for a while. It doesn't mean that I'm going to fall over and die tomorrow LOL. What it does mean is that I have the right to make that choice. Same as you. Same as everyone on this choices board. It also gives you the right to change your mind if you feel like it. But regardless it is still YOUR choice. Okay I'll climb down off my soapbox now haha. I just want to make sure that I am not an influencer either. Everyone here deserves the love and encouragement that we can offer. I'm not going to pretend that I have all the answers. If I did I probably wouldn't be here right now. As you can see Claoh, my thoughts really are in a whirl. I'd love to hear your wisdom in such matters. You always have been so helpful to me! I guess I'm just missing my peace. :)

On another note, my husband brought the bed down from upstairs to put in the fireplace room for me. It was nice getting the weight off my back! I will have to do a little bit of heat regulation though as I dang near cooked myself at the beginning of the night and was cold in the morning after the fireplace had died back. We seldom use the furnace here which is nice because we save on our gas bill. And I absolutely love to cook out of a fireplace! I think I was born in the wrong era! :-) I am hoping to get some Panne de Kristal made today. That's all going to be dependent upon my pain levels though. At least I don't have to stay right on top of it like I do some of the other breads I make. So my husband has graduated from attempting to decorate a Christmas tree to making homemade soups. He made a chicken wing soup that was so amazing! I'm thinking I got a little competition going on here in the kitchen LOL. My next one will be a beef knuckle with shitake mushrooms, onion and garlic reduced down to allow me to get all the nutrients out of it that I am seriously missing out of my diet. I am contemplating a burgundy also but I haven't made up my mind yet. At this point it's pretty much anything that helps with the pain I am willing to try LOL. Hence the mushrooms with their anti-inflammatory properties. I have been having major issues with eating anything lately. It takes me a whole day to eat a ramekin of soup which is always followed by nausea. I think my nutritionist would have fits if she knew what was going on with me. But hey I'm trying. :)

So Sweep gets a special treat today! I had some raisins in my pantry that turned to sugar so I will put them out for both Sweep and the birds. As long as they're not expecting that every day! That could get really expensive really quick LOL. For those of you that don't know, Sweep is one of the deer I have out back, so named because when she eats she looks like a vacuum cleaner! :-)

Okay ladies, that's it for me for today. Y'all have a great day and be blessed!

Hugs

Claoh I almost forgot - have you checked into items such as drawing salve that they use on horses etc to add to your bandages? Just curious.

claoh

always love your input Sadie and wonderful to envision slow roasting yourself and Sweep scooping up the goodies!!!

We did not discuss drawing salve yesterday, but the nurse did order some doxy to help with the drainage. I haven't taken a shower in a few days and was discussing with my husband that it would be a challenge to turn off the water, dry myself and get redressed without feeling like a mess from the leakage occurring in that short time. Another race against time : )

Went to pharmacy this morning to get ample supplies to make up my "sandwich" dressings and also ordered six more of my favorite bra to allow one a day between laundry. Still pleased with my dressing concoction that works quite well.

Between the dressing over the wound and another concoction I made using poise pads to make right breast larger, more symmetrical I'm starting to look like Dolly Parton!! Thinking I'll have to buy some glitter for our chorus concert this Friday evening. Shopped for some breast pads this weekend, but they approach the issue from the bottom, and I need more stuffing on the top of breast. Now I sound like a turkey!!!

sending loads of love to y'all!

marlakeeth

LovesPrimes

thank you very much for your information! and of course the wonderful joke! I don't think I can top that!

Well, I feel pretty good today, chemo is on Thursdays now and I really don't feel well until after day 5 of chemo and then hit it again. The Dr called yesterday and said my labs were okay for chemo this week, however, my hemoglobin is down to 9.4 with the normal range of 12-15. Dr said that she hopes it would come up in the next few weeks or I would possibly need a blood transfusion. SCARY! I don't want that to happen. Dr said it was from the chemo and was not nutritional. Have any of you guys had this happen? Got out of the house for a short trip to the bank and market. I went out to eat lunch yesterday and really enjoyed being out of the house. It is the little things now that I enjoy. Went to my online support group today and one of the ladies has had the Taxol infusions and did well to complete all of them. She has the numbness in her fingertips as I do now, from the chemo, mine are numb with peeling skin on my fingers and palms. Always something new! I wish I had a joke for you all, but no. Love to hear from each of you in our group. Stay strong everyone, easier said than done, but hang in there.

Sadiej

Morning ladies!

Claoh I laughed so hard at what you wrote! I wasn't feeling all that well last couple days but your story definitely kept a smile on my face! What a great idea, using pads to level out the front. Right now the difference is so great that I almost look flat on one side. Definitely want to try this! :-) Is the doxy working for you? I had forgotten about that stuff. I bet it is hard to grab a shower and then get yourself padded up before you have a mess on your hands.

Marla I have had a transfusion before but it was back in my previous breast cancer of 2013. I only needed to have one or two if I remember right. My numbers (including my hemoglobin) are all extremely low right now. Mine are mostly because of the chemo so in a way I'm glad I'm taking a break from it. Did your oncologist tell you that the numbness in your fingertips could go away once you finish your chemo treatments? Also I've never heard of skin peeling from chemo. That's really interesting. I wonder if you have to put a hand cream on or something? Also glad to see that you got out of the house and got to enjoy your day! If we ever get out of this 15 to 35 degree weather that we have I may also consider it but for now I seem to be extremely sensitive to both hot and cold so I'm pretty well stuck in the house.

Not much else to write about right now so I'll sign off. Y'all have a blessed day! Hugs!

claoh

Sadie, your Cleveland Clinic is making news with a triple negative vaccine - AWESOME!! Hope to get it out in about 5 years. That is a true miracle!.

I put the doxy off for a couple of days as the first pill I took did make me feel a bit different and I do want to participate in the chorus concert this evening. So when I get home, I will start on the regimen. I do think it will make a difference as just the one pill seemed to dry it up a bit.

That shower wasn't as bad as I anticipated. Had all my stuff laid out and went pretty smoothly. Felt so good!. Perhaps I'll repeat this evening after the concert if not too tired. I am going to sit during the concert rather than try to stand. At practice last night I had to sit before both the first two songs were finished, from being light headed. Figure it's better to sit the whole time rather than draw attention to myself being a jack in the box. Believe the light headedness is more from blood pressure than anything. I do sit in the back row, so it won't be that noticeable, but sure some may comment. Each day, I am telling another person of my cancer, so soon it will be common knowledge.

My middle son's family is coming in one week from tonight! Looking forward to it, but also a bit daunting as it's the beginning of a marathon of company through the 1st week of January.

Visited my dear elderly friend today and she presented me with a catholic metal for cancer Saint Peregrine. She had presented it to both her mother and daughter when they had cancer. I am deeply humbled to be in current ownership of something so special and sacred to her. It also makes me a bit nervous, to keep it safe. I plan to hang it around the bed post I sleep near and feel blessed by her caring.

Love and Life (sound so nice together), please continue sharing with us.

Take care!!

LovesPrimes

Good morning, sweet pink sisters!

Christmas is two weeks from today and my surgery is two weeks from Friday. I'm still fighting anxiety about all that I want to do before both events but I'm incredibly grateful for three things especially this morning:

[1] A dear long distance friend paid for a professional organizer to come help me with our walk-in closet that became a disaster post-mastectomy. It turned out wonderfully and I'm ridiculously happy about it.

[2] A different long distance friend booked a flight to get here about a week after I come home from the hospital. I'll get precious time with her AND she is a doer. She'll only be here a few days but, knowing her, when she leaves, there will be wonderful food in the freezer and probably some things done around the house. (Plus she'll be able to give my husband a break!)

[3] I was contacted by someone from church who has set up a meal train for us for about every other day in January.

So, I'm trying to take deep breaths and focus on all the love and care I have received, am receiving, and will be showered on me in the days, weeks, and months to come. And I'm praying for my sisters here that they are also being showered with love and comfort.

What is a Christmas tree's favorite candy?

--- Orna-mints!

claoh

So glad to read your post today Love and what a wonderful showering of love and care you have under your umbrella. That will always be something to lean into during the hard times.

marlakeeth

LovePrimes!

You are very fortunate to have wonderful people surrounding you! Everyone says, "Let me know if I can do something for you" But they have stepped up and helped out! Blessed for sure! Love your jokes! I guess I am in a joke drought since I have none to speak of.

I am going for Taxol number 6 of 9 this week, My fingers and hands have stopped peeling, but the numbness in my fingers and toes continues. I have noticed that the day after chemo I feel pretty good, but by day 3 and 4 not so much, just exhausted and feeling blue. Today is day blood draw day and I want to see if my hemoglobin has come up, I am hopeful it has. I worried that all of this lack of exercise has decreased the muscle mass in my body. Wonder how long it will take to get it back?

Claoh, how did your concert go? Did you make it to the finish?

Not much else to talk about for now. See you online soon,

claoh

The concert went very well Marla. We walked into room while singing first song, and then went right into the second song before I realized I was still standing!!!! : ) Thought, ok, the adrenalin must have kicked in so just kept standing and before I knew it, the concert was completed. Really was a blessing. The whole choir sat for a couple of songs, and we also had a 15 min intermission and I never felt light headed like the night before.

claoh

Well, my next post is going to blow your minds. Have some very heavy news.

Went to a surgeon two days ago to seek if she could remove tumor. The end result is that it is too large to remove and if she did so it would just be a cluster bomb for growth elsewhere. She said it is not a life threatening issue, but would continue to possibly double in size every month. The only way to attack it is with chemo..

After some deep deliberation, I did decide to have a consult with an oncologist again as I felt this tumor would affect my quality of life as much or more than the chemo. That is a MAJOR decision for me!!!! Especially as I've read what you've experienced on chemo. I expect to get a call today to discuss this consult and set up a date.

The surgeon did say that the tumor would not be any cause of death, but a continual impact as it grew and oozed fluid. The thought of maintaining this course for my life is unfathomable .

I'm not going doing the road of "should have" as I still am comfortable with my original decision to forego chemo. As I stated in a previous post, I would have been more proactive in getting a double mastectomy after choosing not to do chemo. Now, I would say I should have been more proactive in seeking a consult as soon as I noticed the skin blemish on my breast that was the tumor seeking to come out, and do wish one of my many doctors would have advised me along that route - in addition to saying there was a rare possibility of it happening, say "if there were any "skin changes" contact us immediately" I was not proactive enough and was relying on the "system" for guidance. That is what is so difficult with cancer, all roads traversed are hell.

Now, going back to "what's next". I don't know if I will still take the Keynote 522 regimen first presented, or a lesser dose to address the tumor shrinkage. Also, if I were to find out that my present cancer has spread internally as fast as externally, would I still pursue chemo at all. In other words, if I was told I had less than a year to live, what would I do? I don't know. The only way to know if it has spread is to have a pet scan and I don't know if that will also be required prior to chemo or not.

Sadiej

Claoh - wow. This news is definitely some really heavy news. I am glad that you will be talking to an oncologist to discuss what the surgeon told you. Call it my own "anger issues" if you will, but them saying "It's not a life threatening issue" is the same to me as them telling my now deceased sister that they surgically removed most of it and they'll "just keep an eye on the rest". What a nightmare for you!! I know that isn't an encouraging statement but this really did blow me out of the water. I am so glad that your husband is there to support you during this time of decision making.

So what is next? There are a lot of questions that they need to answer specific to you. I'm sure that's not all the questions but at least it will give you some idea of what it would mean if you did do chemo.

If you did decide to shrink the tumor, would you take the chemo originally mentioned or Marla's chemo or mine? What stage are any of these chemos good for? What is your current stage? Can they tell if it has metastasized into the blood or lymphatic systems? What does it mean if they have? Will you be getting both a pet scan and a brain mri? Will you need radiation if they find other hot spots in your body? Do they have medicines readily available for you that addresses nausea and vomiting, taking your high blood pressure into consideration? Will this require other pain medications not yet mentioned? How many treatments would be required before you could do surgery? What is the recovery time for your situation? What is the survival rate for your condition? (I know I mentioned survival rates before on this blog but it would be a good thing to get that information from your oncologist).

On my part, I will be starting chemo again this coming Monday provided my labs are good. They did an MRI in November when I was in the hospital with covid-pneumonia and did not see any new growth although there were possible metastasis on my spine. These could just as easily be benign. Not knowing however has furthered my decision to jump back on this chemo horse and make sure. I have already connected with my palliative care doctor and will meet with my oncologist this Monday after labs.

Claoh you have a lot of decisions to make. I just want to let you know that whatever you decide I will fully support you.

Hugs

LovesPrimes

I am so saddened by this news @claoh. No jokes today. I think one of the worst things about cancer is the decisions that have to made and then have to be lived with. FWIW, I also will respect and support whatever you decide and hope that you can get all the information you need to make your choices.

Hugs and God bless.

LP

Sadiej

Claoh I forgot to mention yesterday... I got in touch with our local hospice chapter as you suggested. and it was very interesting! The hospice itself told me that as long as I am getting treatments that I would not be able to get hospice however they do have a palliative care group under their umbrella that could possibly take care of my pain meds so I don't have to drive 3 hours to get them. I will be talking to the palliative care doctor Monday about this. They said all they needed was for him to call them and they could get everything set up. Thank you for all your help!

marlakeeth

Sadiej,

Glad to hear that you might be able to get your pain meds without the drive!

Would you be able to give me any info you have about the TNBC Vaccine at the Cleveland Clinic? I want to look into that in the future. I know that they are in the clinical trials stage 2. My brother was telling me that he read about it somewhere and I want to check it out.

For Claoh, so very to hear about your news. It is concerning for sure, another huge decision to make.

For me, I went to the plastic, reconstructive surgeon yesterday and his plan is to do a lumpectomy and a breast reduction on the other side. It sounds like a big surgery to me, however, it apparently can be done as an outpt if no lymph nodes are involved.

Had my Taxol infusion last Thursday and it all went well, but today I have numbness in my fingers and toes again, along with shortness of breath and fatigue. I felt pretty good yesterday, I suspect the after-effects of the steroid that I take before treatments.I talked to the doctor to maybe give me a few more days between infusions to perhaps buy me a few more days to recover. She said that there were no studies to indicate that it would not change the outcome, just as not completing all 9 weekly infusions would not change the outcome. Interesting Huh?

No jokes again today, just hanging in there for now. Keep posting!