Topic: Pre-existing mental illness now w/cancer

Jan 27, 2018 05:17PM Faithonfire wrote:

hi everyone!

sorry it took me so long to get back on but I have been so relieved I have slept almost the whole time since I got home from a very painful but good day of doctor visits! I started with getting my drains out and ability to shower back with my grafts but no more baths until after second surgery. I got my final reports on pathology and I was as close to total response as possible but wound up over 2/3 totality as my 5.5cm armpit tumor shrunk down to 8mm! The other 3 sentinel lymph nodes removed showed total clear in all 10 segments

I am still pouring over my own data to apply for a few studies and wrap my head around it all but I couldn’t be happier with the results! I am exhausted but happy my pain meds got increase needed to heal myself faster. The skin has shed for the first time on grafts and it is attaching so well I am excited to have the opportunity to feel like myself again one day!

I am happy with my scars and placement it is healing very well now so I can finally relax for a while.

Didn’t mean to take that long to get back on boards but it’s been quite a blur after that whole surgery and family drama that has led to my husband STILL not responding to me since surgery night!

I’m just getting used to my new shape and we can pick final size without any need to fill me first because I have plenty of room and didn’t loose as much skin as I guessed they would take! I will be a heavy c to d depends on what fits better to fill me back in so I will be very excited to go to Victoria’s Secret and get fitted again but I’m a light c now under filled to ease tension on scars straight across as they kick out glue and heal drain spots that are very painful!

I’ll post my full stats Oncotype and risks and all after I pry it away from mom who has been glued to phone with my sister getting her testing ready too so we will have more data! I hope she comes up clean and only I had to get it!

I’m going to rest up more and feel fantastic as my hair is coming back in super soft and eyelashes are back too yay it’s like they sprouted overnight

Jan 28, 2018 03:20AM Faithonfire wrote:

Thanks FI,

I am doing pretty well with the meds now that we got it back to reasonable levels for post surgery and a nice step down program ready for me as I heal. I was fortunate to have palliative care office override any doctor treating me with my cancer diagnosis about all pain management so it really was empowering as a patient.

The doctors that claim to be “uncomfortable” prescribing appropriate levels of pain relief for the treatments they are all too happy to push on you that CAUSE the pain these drugs were created to TREAT find themselves dragged in front of the state medical ethics committee to explain their career audits and bedside manner that would make true psychopaths blush!

I have been the victim of enough misdiagnosis and mistreatment in my life that I went in to my chemotherapy like a warrior ready to die in battle before I would EVER allow anyone to patient shame me about my feelings or reporting drug side effects properly!

I had a ptsd specialist for weekly therapy who also happened to be an addiction specialist that lectures on ethics for the medical specialists teams and reports to the state issues like these that need to be resolved NOW because some patients just don’t have time to waste in agony until the standards are changed to suit the needs of the patient first over a doctors callous worries over liability! If a patient like me does not deserve a perscription then who DOES??!! That’s usually the LAST thing they want on record too so it’s all about using the proper argument to solve the REAL problem.

We settled on using vallium and morphine pills and it’s working SO much better than the newer classes of antidepressants I tried before there are almost no side effects other than sleeping a lot!

which is what one does after major surgery when not awakened to blinding pain every few hours for more meds! It gets counterproductive for patients and staff in the hospital so the system is now currently under review in most states thanks to dilligant patients willing to take the time to aid the process by being candid about their care.

I am working on getting school involved with our reunion and future relationships with my daughters but that will take time and a lot of patience. My husband is in for quite a rude awakening the day he is informed that ignoring me does NOT eliminate his obligations to me or allow him to violate my disabled parental rights anymore simply because I am not strong enough to stop him myself! I will tell you all more after he is dragged out and held accountable for the lies he had told so far

Feb 18, 2018 06:23PM jaymeb wrote:

Feb 20, 2018 02:12AM Faithonfire wrote:

hi jaymeb,

I’m ok and hanging in there since my second surgery to trim some necrosis and heal me up so I am only 2 weeks out of that hospital stay and feeling a lot better after being out of it for that long. The meds really knocked me out for a while until they got infected tissue cleared. Grafts look better and I can still keep them for now but it’s touch and go each week they check.

Hope you are doing better with your recovery too I keep you and your loved ones in my prayers and am getting better one day at s time.

My sister and husband cane out for a visit yesterday and were kind enough to stay in s hotel for the few days to make sure not to get me sick. I was surprised but so pleased she is going out of her way for me this much, not talking to my kids has been very hard on all of us so she and my mom are going to get to talk a while and find a fair solution for all involved.

Wish me luck and I will catch up with you soon as this craziness calms down s little more but I refused to do radiation and it’s official! Ya

Mar 4, 2018 06:31AM Faithonfire wrote:

Hi

I’m glad to hear you got to keep most of your Areola that’s great and I’m sure you will look fantastic when they fix you up for good in a few months!!

We all know by now I’m not so lucky but I’ll get to that later...

So as much of a hassle as it is waiting to properly heal is so crucial to best results you just have to keep telling yourself scar tissue is actually stronger than normal skin and takes longer to grow I’ve found. Mederna is top notch for results on face and breast scars but expensive so other options like palmers skin repair oil is great too and more for stretch marks and later red reduction. I always had great luck with it and swear that and mineral oil allowed me to top out at 240 carrying my son now 13 to 95 last June when diagnosed! I hardly have enough skin to work with now but no floppy extra skin anywhere and triple strong hide with some seriously badass white flame pattern stretch marks look like tattoos almost it’s funny to me still!

Finally had enough hair to put it back to blonde than my bizzare white stripes and dark patches making me look much older and sicker so it’s a small comfort to start ditching hats on my way out in public one day at a time.

I was hoping to see my kids for Easter or spring break but they have all blocked my number and I’ve had no contact as soon as he hung up on me after my first surgery in the hospital over a conversation I can’t even remember!! That is his version of being there for me...and every burse that watched me cry myself to sleep that night is still hoping to hear about the day his luck runs out and he gets what he deserves for putting me through that after a 9 hr surgery recovery if not to hope to cause fatal complications without laying a finger on me to get away with it!!!

Have only had one or two calls or texts since ALL ending immediately whenever I ask for any information about any subject from our house,kids to arranging for me to see them even if he does not want to see me and divorce me forcing me to loose my health insurance with a diagnosis like mine on top of violating my parental rights and brag about it!

It’s almost more than I can bear each day knowing mother’s day for the first time in my life will only be spent in agony because of my loving honorable husband and kids mocking me for being too weak to stop them and denying me any mercy or hope and I don’t know how I am going to handle that this year all alone right after chemo and reconstruction for stage 3 breast cancer that I’m still not healed from enough to take a bath still!! One side keeps getting about 2 inch fail to seal scab over temp implant fill plate pushing directly on that spot hard like flat gold ball with sharp edges but it MUST be my fault for being a smoker and not the design flaw of a shitty product causing patient harm to just one side of double mastectomy... the one with no lymph damage like other side that looks just fine!

The failure to thrive response is systemic and directly related to my husbands emotional tactics so strategic in timing that I never stood a chance from the day they threw me out and then said I abandoned them and was a liar for saying I have cancer!!

My nipple grafts are still not closed yet but still scab stage in middle only showing minimal necrosis in middle but lost higher part if rest can be saved to replace from c scar bank it’s seaked well to it will be flat parts with small reconstruction fill in middle for lost depth like armpit divot from 3 sentynl lymph’s taken but my nerves all still work and feel different than any other skin I’ve got left!

I survive now just to get these hideous rocks out or at lest filled to proper size to give my scars a fair chance to heal feee of pressure points and stop hurting this much every day! I just want to be whole again and am having a harder time than anyone thought now that ignoring me is such a popular trend I have lost my will to fight it and pray for strength and healing to hold my husband accountable for choosing to behave this way without any bad results in HIS reality! I’m shocked it’s tsken this long truth be told!

I just hope I get to hear from my kids soon even if it’s just more cursing and false accusations I can hear them and know they are alive and well relatively speaking anyway. I really expected our high school to be more helpful but not until I show them my face when I can get back there and gather the guts to do it again in person hoping not to be too humiliated to cry in public like that.

So sorry but I’m hanging by a thread these days hoping for a miracle and one pain free day

Apr 6, 2018 04:46AM jaymeb wrote:

Hi Faith

You're hard to track down. It's been six weeks since my exchange surgery. The side where the implant was put in seems to be ok. I chose the teardrop silicone plant. For me I thought that one would look more natural, especially making it match to the reconstructed breast. I tell you with the unilateral mascectomy, expanders that felt like a rock which had to stay in six months after radiation. So, in a nutshell, it was almost a year when I finally got my exchange. My poor boobs have been through a lot. I told my friend I feel like I've been butchered.🤣🤣🤣🤣🤣

Faith, how was Easter for you? Did you get to see, or talk to your kids? What's going on with the husband? Do you think it will work( I would love to hear if you two could work slowly and rebuild). Or does it look like you two might divorce? You definitely need toxic people out of your life. I definitely won't let dramatic and toxic people in my life. And Faith, neither do you. We have gone through a serious illness, life will never be the same. I've learned not to let things get to me as much. I count my lucky stars I'm still here with the support of my daughter, mom, brother, and ex-husband. Believe me thought, I have my depressed days. Not easy.

Did I read right, you weighed 240lbs , then dropped to 95 lbs. Wow. Are you underweight? Wish I was that small. I HAVE GOT to get 30 pounds off. Never struggled with weight issues until I had to start taking all kinds of meds.😥😥😥. What is the ugly face of beautiful? I have Netflix. Tell me a little more about it. Also, the fish? What in the world?

Oh, I did choose the teardrop implant. On me, it looks more natural, and matches my other breast well. I just hate the scars. I still have numbness on mascectomy side. God, what we go through. Uggggh.

Faith, I get so confused. Damn tamoxifen. Have you done your implants, or getting them soon? I keep forgetting you didn't do radiation. Lucky you. Radiation is why I had to wait forever for plastic surgery. Oh, and have to wait three months for a nipple tattoo. Stupid me thought I would go back into surgery, but no, it sounds like I will be going to a tattoo artist who does these 3D nipples. Siggghh🙄🙄. Please respond to me soon. Want to hear how you're doing, and what's going on with the kids.

Apr 14, 2018 03:07AM Faithonfire wrote:

I guess I’m so grouchy lately that I scared everyone away, sorry about that.

I’ve been thinking a lot about my return home and getting a transfer team together is a full time job in itself! I am going back to the Stone Age of medicine state coordinated care team headquarters and getting in on a new fda approved trial drug by June 22.

Proclib study is being done in combination with 5 year tamoxafin 20 mg pill. It’s a 2 year monitored study based on your residency state but offered through my treatment state

After only 2 of 3 reconstruction needed surgeries complete I am not physically ready to tackle all these new challenges alone and am not sure how this reintroduction will go so I will be staying with my sister as I get settled in and everyone gets a good look at me and all the catching up will be hard for me personally as well as professionally

. I am still in medical leave limbo... unpaid of course for part time but still full dues taken for the privelage of working for minimum wage but not enough to qualify for benifits of any kind so I used my husbands teamsters insurance as always and never told my diagnosis to anyone at work before I had to leave so suddenly and I honestly am still at a loss for words for how I was treated so I think my union rep will help me settle up with them face to face when I get back.

I am going in to see my oncology team Monday for full trial briefing and transfer team review before I’m due back for final reconstruction surgery this summer so now both styles of follow up care will be fully documented in my study data for review upon completion.

I’m SURE I’ll see my plastic surgeon too since she’s on call there that day anyway so we can properly adjust my fill rate before I have to demonstrate my implant reversal as a reported side effect in video form for them despite the pain it will cause they NEED to understand what is going on inside my body NOW on left side due to massive underfilled temporary maxum saline implant in pocket large enough to flip inside my body like a rusty can lid and looks worse than my tumor masses right now after my own body snatched 10% saline out of left one only and never being filled since insertion despite my modest weight gain so once I get an in house second opinion it will validate my feelings on the issues to say the least!

She simply cannot send me back looking like this and was all too eager to overinflate a week ago only IF I agreed to radiation treatments and quit smoking completely immediately which was NOT in our contract when she agreed to work FOR me.

I decided against radiation treatments and am working on quitting smoking with ptsd so deadlines are BAD for me as well as holding me hostage by delaying or denying contracted work to be done for violating her personal morality clauses I NEVER agreed to in print or any occasion! She is paid to restore me as WE agreed in contract procedure and I’m holding her accountable for her decisions and basing them on passing too much responsibility to unqualified staff lacking HER credentials to make the decisions I pay HER for and not her snotty little underling lacking the degree or proper training to misrepresent my situation with her prejudice against my personality OR complete diagnosis!

I doubt sensitivity training will save a career like THAT because some women who like to borrow others career credentials as if they earned them themselves simply should NOT be permitted to work with vounerable reconstruction cancer patients EVER again!!!

Once I am completely forthcoming about her impact on my experiences with a great specialty department and left ME in a position to need a third party in the same room watching conduct at all times to avoid getting hurt again after trusting her to remove drain tubes incorrectly instead of qualified surgeon who inserted them under the watchful eye of my oncology surgeon!!

Like I said I have a LOT of people who want to see me so we better ALL be prepared to do our VERY BEST to fix problems as we find them before the cost of ignoring it results in total failure and rejection of a social ideology like a tumor that plagues the healthcare industry and should be rooted out quickly before damage done is irreversible to the reputation of anyone willing to gloss it over instead of make an example concrete enough to be effective in the field entirely.

I’m SURE I’ll be just fine once I am feeling a little better as I see everyone back home again for the first time... I can’t hide what I’ve been through so how I feel about how I look is the most critical component to calling any procedure a success when in such an experimental phase of reconstruction.

Wish me luck because in going to need it!

Apr 15, 2018 10:38AM bluepearl wrote:

Inflammatory processes can be alleviated by 1 to 2 Tablespoons of olive oil per day and increasing magnesium levels because higher amounts of stress severely deplete magnesium stores and result in decline in moods and increase of anxieties which then depletes magnesium more! Get one that says "absorbable" otherwise it won't do you any good. There are various kinds almost always better than magnesium oxide (unless it says absorbable). Epsom salts can be made into a magnesium body spray as well and you can even make magnesium water out of Milk of Magnesia...check out youtube on that. Exercise and losing weight also reduces inflammation. If you have abdominal fat, THAT acts like one big inflammatory organ and has to be reduced. I am on a low carb, high GOOD fat, moderate protein diet and when your brain starts utilizing fat for fuel rather than sugar, moods are elevated.So is a lot of stuff...lol. So sorry you are going through so much stress with so many things! I bought a CD on mindfulness too.....meditation is amazingly healing and mindfulness is one form of it.

Apr 17, 2018 01:25AM Faithonfire wrote:

hi and welcome blue pearl and roaming star!

I will give the magnesium angle a try since I have not thought of that before so I am looking forward to learning more about some of the ideas you mentioned in reverse actually

I am wasting bad enough to be on Marinol right now and fighting to gain more mass in the middle of the reconstruction phase to give my plastic surgeon more to work with before final implants are installed and nipples regrafted to mound and properly spaced and shaped with my own saved organs and breast tissue YAY!!!

That’s right around the corner too so best thing I found to work in addition to stuffing myself as often as possible is whole milk mixed with heavy cream put the pounds back faster and better than whey protein supplement powder or bars for me after finishing my chemo in January. Im 5’7” at 120 right now and need at least 20 more so I found staying hydrated to really help the first few days after my chemo infusions and still help without overloading my system.

Plastic silverware helped me not taste metal as much until I finished chemo too it sounds silly but helped me keep trying! I was down to 95 lbs when first starting chemo last June so they actually helped me gain weight at the same time!!!

Best of luck to both of you in your journey and it is a pleasure to meet you both!~ faith on fire

Ps. I just tried this old home remedy and it worked for 4 hrs solid to help mild arthritis in both hands and it’s one teasooon of apple cider vinegar and local honey in a 8 oz cup of any tea you like and I was surprised with how well my aunts old trick really worked well on me! Didn’t taste as gross as it sounds too ha!

Good luck and thanks for the new ideas!

Apr 17, 2018 08:26PM - edited Apr 17, 2018 08:27PM by Mechq

Jun 25, 2018 11:19PM - edited Jun 25, 2018 11:32PM by Jeri68