Choices

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!

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 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!

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.

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.

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

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!