Any Texas Hill Country BC Warriors?
Comments
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Cindy, thanks for the update. I pray that the chemo will give your husband many more months and minimal SE's. How hard it must be for both of you. My heart is breaking for you. NIce that you have family close for support, etc. Take care of yourself, too!
Linda, so sorry to hear your sad news. Our fur babies are so much comfort, esp during hard times. I know you miss her terribly. Yes, a break will be nice. Take advantage of it! I hope your radiation goes well. I was very nervous, but it wasn't too bad, really. I did 33 TX's. California baby makes some lotion that my RO recommended. You can find it at Target in the baby section. I never really peeled, but got pretty red. My RO did blood work every week while doing rads.
Candy, I hope your appt goes well on Thursday and you are good with your decisions. Pls keep us posted.
Chaos, sorry, I already took first dibs on Holli's suitcase! LOL. Sounds like your Dr's are just covering their butts; don't take it too personally. It is your body and ultimately your decision. They are following standard of care protocol....but, we aren't all "standard", are we?:) Glad you are back home! The best place to heal. I hope your SE's calm down soon.
Vicki, when is your 18 month? Do you have to have any scans? Will be thinking of you.
Holli, Jen, Kelsey, calico, Zelda, I hope you all are doing well!
Thanks for all of your cheers! It really means a lot to me
Your love fills me with joy! BS follow up appt on the 9th...
Good news: Today is my daughters' 37th week of pregnancy! Yay, she made it! So, the countdown begins. She goes to Dr tomorrow for sonogram, etc.
Have a wonderful week, ladies! Can't wait to see you again.
A friend posted a place on FB near Seguin, called Geronimo resort, if any of you want to check it out for the Fall: www.geronimocreekretreat.com/
((HUGS))
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Thank You for your prayers.
Hubby was to ill for more chemo. MO said it was time for hospice. He recommended a skilled nursing facility. Hubby went, but oh my a nightmare....I contacted VNA Hospice and brought him home the next morning. He is resting, pain free on methadone, pup guarding the hospital bed, his sister comes tomorrow.
Hit hard today when social worker ask if we had selected a mortuary....I hate c. Not enough time.
(((Hugs)))
Cindy
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Cindy -
My heart is breaking for you. Wish I could be a fairy godmother and make it all go away. Happy you have the pup, as I am sure he is a source of amusement, comfort and joy. Also happy family is on the way. Let us know how we can help!
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Cindy, So sorry to hear that news. Please know that we are here for you and your family.
(((BIG HUGS)))
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Oh Cindy... My heart breaks for you as well. God Bless you and your husband. I wish I had words or superpowers or something to make it all better...
Holli
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Cindy - not enough time. It is exhausting being so angry and so sad at the same time. Please be kind to yourself - maybe let family deal with all those details that do need to be dealt with and you spend all your time with DH. He is blessed to have the best caregiver -you- I know we all want to take care of you! I am adding my love and prayers for strength and mercy to all the others.
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I agree with book lady's advice.
Not sure if this helps but I felt led to share...
We went to health food store this week. Trying to change my health habits. But as I stared at the sweet man working there with a blank look because chemo brain kicked in and I lost what I was going to say... I had to explain to him I had gone through cancer treatments since I looked crazy. He then started adding all this stuff to my basket. So I kinda got steamed rolled but I appreciated his passion for helping others.
Anyway... To make a long story short. He said something really profound. He asked my oldest what time it was. She guessed 5pm. He said wrong... It is 30seconds until NOW. In other words, live in the moment.
My girls have been joking about it all week. "What time is it mom? It's NOW". But I think it made an impression on them and certainly gave me something to think about...
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Cindy, I am so sorry and so sad that you are going through this. Makes one want to scream "Not Fair, not fair!!". As we are finishing up our cancer struggle and looking forward to some fun and happy days, our loved ones are stricken with even more serious health crises. My husband was recently diagnosed with Stage 4 colon cancer.I am thinking of you and praying for you and your DH to have comfort and peace.
Same with all you Texas ladies! I continually visit to check on y'all. Wishing you all the best. Jackie
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For all you who are tired of winter! My DH's photo that will be on Texas Highways cover next month.
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beautiful photo!!
Looking forward to tons of bluebonnets this year with all the rain we have had.
I'm so sorry about your husbands diagnosis. Why won't this just all stop?! You are so right... Not fair.
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Cindy, wrapping you with a tight virtual hug... jlow, you as well!
I've had a bit of bad medical news for a family member as well, seems to be contagious... my grandmother who raised me is in the final stages of congestive heart failure, blood is pooling in her heart unable to be pumped out, doctors have said there is nothing they can do about it, so it's just a waiting game. So glad that I moved back to LaGrange, she is my across the field neighbor so I am able to spend time with her, have been trying to talk her into moving in with us, but shes one of those tough stubborn german fraus so for not being close will have to do
Its a time of many blessings and curses, I just hope they keep balancing out... feeling more normal than I've felt in at least a year... in 3 days it will be a year ago that I first noticed the lump, of course it took me almost 2 months after that before I went to the doctor (stubborn german frau-ness might be hereditary lol) but... all in all it is kind of nice to have that semblance of normalcy that I've taken for granted in the past
Wishing you all way more blessings than curses!
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chaos- my grandmother did a lot of my raising too. She passed in 2003 - a year to the day before my first child was born. I'm so sorry you are experiencing this heartache. But I'm thankful you are close to spend this time with her. I love your wish of more blessings then curses.
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Chaos, thinking of you and your grandmother. They are such an influence in our lives.
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Thought this was a good article.
http://www.givingcomfort.org/blog/surviving-cancer-emotional-impact
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Hello ladies,
Chaos, very sorry to hear about your grandmother. That frau-stubborness certainly is hereditary! (and that is a great thing!) I hope you are feeling ok physically these days.
Linda, so to hear about your 4-legged kiddo. I know mine are my world. (hugs)
jlow- thanks for the beautiful photo.
Terri, almost time for that grandbaby!
HOlli- how are you feeling?
Candy- how did your appointment go?
Vicki- how's life?
Cindy- still sending a ton of love your way. Please don't hesitate to call for anything!
Just had another checkin with my MO- still NED!
And I wanted to drop in and share this thread with you: https://community.breastcancer.org/forum/78/topic/829343?page=1#post_4329036
I started it because my MO wants me to consider the SOFT study and possibly change to an AI+OS from Tamoxifen. It is a lot of info, and a big decision to make. If any of you are in the same boat, or have already switched over, I would love it if you shared your thoughts, and share the thread with others in the same place.
Thanks!
Big Hugs All Around!!
jeni
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Jeni - I've been on an AI + OS the whole time. I take Aromasin daily and get Lupron every 3 months. I saw my RO yesterday and he said that my joint pain is probably from the AI because that is a common complaint (he also took responsibility for my frozen shoulder. He said I have tons of scar tissue from radiation just like in my lung. Oh boy!). I'm having a total hysterectomy / oophrectomy in May. One of the reasons I'm having it done is so I can stop the Lupron (I figure that's one less thing I have to do every 3 three months). I really haven't noticed any other side effects except that occasionally I sweat like crazy.
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Jackie, so sorry you are going through this with your hubby as well. Such a beautiful photo!!!
chaos, sorry to hear about your grandmother. I still think of mine and tell my grandkids about her. She is someone I will never forget. Grandparents hold a special place in our hearts.
Holli, I hope your fund-raising is going well and you are packing your bags soon! Are you feeling okay?
Candy, how are you? I hope things are going better than expected.
Jen', congrats on NED! That is awesome news.
I saw my BS on Monday. Another 6 month follow up in Sept., and if all is well then, I will graduate to annually:). I had an ooph 9 yrs ago, so can't help you with the switch. I know you'll make the right decision...because that's who you are!:). Tamo hasn't been hard on me, but I have read that Al's are better for post-meno as far as recurrence reduction. But, with osteoporosis and osteopenia, I'm not going there...at least right now. MO said another bone density in February to see if my supplements have helped; then, will decide.
Cindy, thinking of you and hubby.
Vicki, Linda, I hope all is well with you both!
DD has a Dr appt tomorrow:)
Enjoying this Spring weather. I bought some raspberry, blackberry bushes and rosemary yesterday. Going to get them in the ground this week-end. Anybody have any tips?
((HUGS))
Terri
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hello central Texas ladies! Sorry I have been MIA lately - just struggling with everything. I had my left breast LX on Friday the 6th and got my results today. Unfortunately No clear margins. Didn't want to risk a recision so scheduled to do BMX next week the 18th. Had to go with a colleague of dr Nelson's cause she was booked for 4 weeks and naturally I couldn't deal with the waiting - emotionally. My sis in law will stay another week and I am so grateful cause I have been a basket case. The 1st surgery wasn't too bad and I got my drain out today only after 5 days. Just a little sore but no real pain. The thing that still worries me is my nodes. My sentinel node came up postive so she removed them all - 5 were identified and 4 out of 5 were positive with the 5th one having signs of possible cells. She then Went up to level 1 and removed all of them - but they only identified 2 lymph nodes and neither of the two came up positive so she stopped and did not do the full axillary dissection. She told me today that the chance of there being any Cancer in the axillary above level 1 is very remote and because I will get radiation it would control anything that "might " be left. I was concerned that only 2 nodes were identified and tsted if she removed all level 1 nodes but she said that everyone's number of lymph nodes is different but I was still quite shocked to,learn there were only 2 tested in the level 1 axillary area and I have trust that she got them all. She also said she felt the level 2 area and looked and did not see anything that looked suspicious. Has anyone else had just a level 1 dissection or something similar to my situation? Again - I just want to get the Cancer out of my body and do everything I can to ensure it won't come back. I also do not want to delay radiation or endocrine therapy which is why I chose not to worry about reconstruction until I am done with all my treatments. I know that I probably can't start radiation until 3-4 weeks after BMX - but that is better than waiting even more to try and do some type of recon. My head is spinning just thinking about having surgery again in just a few days - just trying not to kick myself for not choosing BMX in the first place. I had a feeling the LX would not be successful since I had 2 tumors and it is ILC - but I guess I made the best decision at the time with the info I was given by my BC. I still hate that I am in this position - but thankful I did not have to wait 4 weeks. I see the other BC - dr. Parker on Friday this week. Any advice, thoughts, suggestions on questions to ask are always welcomed and or tips to help prepare for upcoming surgery and aftercare. I hope I am done with all this and can start to feel some what normal again and can come to the next central Texas meet up. I am trying to stay positive but it is becoming more and more difficult - just wish I could turn my mind off. I wish everyone well and thinking of you all. Candy
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Candy -
So sorry you are having to go through surgery again. I wouldn't be surprised if the final path report proves the BMX is your best choice.
I can only share my experience, so I hope it helps:
- Plan on sleeping in a recliner for the first week or two...at least until the drains come out. You can only sleep on your back for the first couple of weeks, so the recliner was the easiest option for me. I lived in it
- I think much of my discomfort was from the tissue expanders, as I started reconstruction at the time of my BMX.
- My plastic surgeon believed in good pain meds, so I was doing pretty good (get stool softeners, though - pain pills will stop you up fast). But I still think my "pain" was mainly my tissue expanders. Those suckers are uncomfortable!
- I was working 1/2 days from home by week 2, 1/2 days at the office during week 3. It's amazing how much the surgery took out of me, stamina wise. I thought I could go back to work full time after a week or so off. My boss forced me to start from home 1/2 days, the 1/2 days the next week in the office. She was right. I was very tired.
- Pamper yourself - watch chick flicks, let hubby wait on you, read.....give yourself time to heal, both physically and mentally.
Overall, it wasn't bad. I agree with your decision to wait on reconstruction until after radiation. You never know how your skin is going to handle it. Terri can give you great advice on minimizing side effects.
Can't wait to see you. Meanwhile, major hugs and healing thoughts your way. Let me know if I can help!
0 - Plan on sleeping in a recliner for the first week or two...at least until the drains come out. You can only sleep on your back for the first couple of weeks, so the recliner was the easiest option for me. I lived in it
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Candy -
Quit beating yourself up!! You have to go with what feels right at the time with the information at hand. Hang in there!!
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Oh Candy! I am sorry that you are having all these complications! Don't regret not doing a bmx first, you made the right choice with the info you had.
For surgery recovery, my tips are as follows:
1-make sure you have a comfy recliner. getting in and out of bed is not fun.
2-You will nave more drains, so- find a zip up housedress and sew pockets on the inside. It makes wrangling those damn things a little easier.
3-Stock up on your favorite movies. You will have a lot of down time.
4-When they say no lifting, they mean NO LIFTING. Same with reaching too far. You do not want to undo the surgeons work.
5-I took arnica pills and had very little swelling and pretty much no bruising. I know it sounds hinky, but it worked. Dr Dauway was even impressed. (I am so sad she moved!)
6-Make sure you have a shower chair and a hand-held shower head. Once you are able to shower, standing and trying to keep your surgical site dry are too much to do at once.
7-If you can afford it- get one of these: http://www.homedepot.com/b/Bath-Toilets-Toilet-Seats-Bidets-Toilet-Bidet-Seats-Bidet-Seats/N-5yc1vZbza8/Ntk-Extended/Ntt-bidet?Ntx=mode+matchpartialmax&NCNI-5
I know it seems ridiculous, but it was wonderful to have it after surgery. Washes and dries!
8-Stock up on your favorite beverages and snacks, stay hydrated, and take your vitamins.
9-Call me for anything. I'm happy to help or just listen if you need someone.
- jeni
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candy,
Jeni has some great advice. I second and third sleeping in the recliner.
I forget... You will be in Austin right? If so, Contact the Breast Cancer Resource center (BCRC). They will give you a free shirt to hold your drains and a pillow to put across your chest (helps with the seat belt issue). One of the ladies even visited me in the hospital (st. David's) and brought me a blanket.
I'm sorry you are having to go through this. As a lady on another site says "just keep swimming" - quote from Finding Nemo. We are in your pocket.
Holli
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And yes to the shower chair too
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I may have posted this already ... But I love it and it helps me stay motivated (most of the time :0)
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Jen -
Thanks for reminding me about the no lifting!
Candy - even opening the refrigerator can be tough! Don't do it! And don't think a couple weeks later that you can turn into Susie homemaker. I popped a stitch mopping the floor and had to go back in and have it restitched (in the office, thank goodness). Got maid service out of the deal....still have maid service twice a month.
Here is the shirt Holli was referring to. It's a god send. BCRS in Austin provides them for free...in Austin. If you are NOT having surgery in Austin, let me know and I will do what I can to get you one.
I also bought inexpensive jammies that buttoned down the front. Easy to get in and out.
The best advice....let people help you and pamper you. That was the hardest part for me.
Call or PM me if you need anything.
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Vbishop- totally agree on asking and accepting help. Learning to just say "Thank You" is a great lesson.
Check into "cleaning for a reason". There was one close to me since I'm in San Marcos, but there may be one close to you. They provide free cleaning services for cancer patients.
I still have someone in every other week. I just don't have the energy to do everything I'm doing and still clean my bathrooms.
I also premade baggies of green smoothie ingredients and froze them. That way I (or whoever was helping me) could take out my Baggie, put it in blender with almond milk and protein powder and I was set.
I also juiced and froze those in breast milk storage bags (ironic I know).
Not trying to overwhelm you, but just sharing some tips that might be helpful.
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Candy, so good to hear from you! I understand your anxiety with playing the waiting game. You just want all of that tumor out of you...and right now! Don't beat yourself up about the LX vs BMX. These decisions are hard and we do what we think is best at the time that we make them. The BMX ladies have given you great advice. I will be praying that you find peace and that your surgery and recovery goes well! You have a great medical team and family support. Lean on them and let them help you when you need it. As others have said, that's a hard lesson for most of us. I don't know about the ALND, but personally, I would probably feel confident in what Dr Nelson has told you. You could always get a second opinion, if you are struggling with that. Or maybe Dr Parker can give you more insight on Friday. Not to give you more to think about, but you might want to ask them about lymphedema also, just so you are aware of the possibility and what to do to try to prevent it, etc. I would be feeling the same angst that you are, but if it gets too over-whelming, maybe Dr can give you something to calm your nerves, temporarily. You need to sleep and be as stress-free as possible in order to heal. Know what we are here for you and in your pockets as you move forward in kicking BC's butt!! ((HUGS))
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I wish there was a "love" button!!
It warms my heart to "hear" everyone chiming in to help Candy....and anyone else needing help. The support, caring, compassion, and love for each other oozes off the page!! I am so blessed to be part of this group!!
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Vic, Terri, Jeni, holli - thank you for the words of encouragement and support and also the great tips. I too wish there was a LOVE button I could push cause knowing you are all there for me (despite only having met once) feels me with feeling of love for you all. I am so very lucky and glad to have found you ladies. I have been surprisingly calm these past 2 days - in part thanks to having my sis in law (Anne) by my side. We have just veg'd, watching movies, talking and taking walks. Pete continues to be amazing - i
Between the 2 of them I know I will not have to do anything but rest after my surgery. I am amazed you went back to work so quickly Vicki - I think I will definitely take an additional 2-3 weeks off. But who knows - I will take it one day at a time. I think my next anxiety is about how everything will look after the "girls " are gone and adjusting to life without them - clothes wise, etc. I am trying to prepare myself but how does one prepare? I did contact the BCRC yesterday via email but had not heard from them yet - may just call them this morning. Great tips ladies and I know I will be well prepared. Thanks again for everything and I will def. will be reaching out to you more as I move forward. Candy
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Candy - on my way to radiation #3 when I read what's going on with you! I'm so sorry - breathe and let sister in law distract you. Also, this forum has tips on what to do while waiting for reconstruction to feel more comfortable with your body - maybe helpful? XO linda
Living without reconstruction after a mastectomy -foru
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