Wishing Milyn the Best

[Flagryl]

You look beautiful Milyn and good!!! That's a sure sign despite your discomfort which seems to be getting better but I understand the ups and downs after surgery. Yes, I hope you get some good PT. Will make a difference in the use of your arms.

Kudos and Hugs to you dear Milyn!

[Mary]

Sending you huge gentle hugs!

[Grassy]

You look great! PT is awesome! I am sorry for the discomfort and drug issues. I hope everything sorts itself out quickly. I remember how itchy the binder was. I hope you feel better soon. Sending love.

[silk]

Great photo Milyn.♥

[Smilyn]

Hello to all and thank you for the good wishes! I have been struggling with the stages of recovery from this overall situation and the specifics of the new and unusual closure where skin is folded and tucked under skin then exterior skin seamed over the top. It's unlike recovery of other procedures because the skin beneath is still alive and compressed into new positions - while the exterior skin is going through the same processes most mastectomies mean. One side sprang a leak and apparently a pocket has to drain. The other side has not but got very hard and deeply bruised; I feared internal necrosis. My surgeon has been away but I was able to reach her with photos and a detailed report. I know what to watch for that requires a trip to the ER now. However; she was not alarmed by my report; she said this is the difficult time where things change a lot, hurt a lot, and look scary. They certainly do. I don't share the new photos. I also don't use my arms. I will go lay down with my arms blocked into position after this and take more pain meds. My chest wall muscles and under arm muscles are having conniptions. May 8th was our 42 Wedding Anniversary. We each had a card stashed from other years and handed them over. That was it. Steve is very tired from supporting me and I can't seem to get caught up on rest no matter what I do, but then I also can't quite fathom how much healing is going on inside and out. I'm not superhuman any more. Thankfully, I have successfully avoided infection. Yay! I do my wound tending and stay put in my recliner or on the "bed"blocked into the couch and wait. that's my day. Being good.

My eldest brother had his remaining leg amputated four days ago in Crofton, BC in a lifesaving diabetic measure. I was finally able to talk to him last night for a few minutes, just hearing his (somewhat loopy) voice was reassuring. Steve's son and wife suffered an attack on the animals of their sanctuary by a duo of dogs who came from a house two miles away, killing a goat, maiming a sheep and wounding all the cows. It's a big mess and we talk to them supportively as much as they need. They had recently had another goat die unexpectedly, an alpaca pass from injuries in an accident with a cow, their dog died, his sister died... all int he last 6 months. Jon reiterated that list for me in yesterdays call including my diagnoses and surgery in the things he has been upset by - right after the loss of his sister. I am never at the PC now, but had a telehealth appt and needed to do the precheck in stuff for my post surgical PT assessment next week. I wanted to let you all know that I am here in spirit, think of you all often, and am hoping for better days ahead. That's it for me. Pain says I am done. HUGS!!

[Huronna]

AT least once a day I'm over at Facebook, looking for updates, some times I post, but not all the time, but I am watching. What a trauma with Steve's son and wife. How horrible. I would be a basket case.
Hope you brother does well, does he have a full time care taker?
You are hanging in there, nothing at the moment is easy, but I see you are still smiling, and that's a good thing.

[Grassy]

Recovery is super duper hard. I hope you are giving yourself plenty of grace.
I have been looking for you on FB so I am grateful for your post. I love you.

[Vikki]

Beautiful Picture, Milyn! I see so much strength in you, no inside complaints, no negativity, just doing what you can do to improve your physical being and maintain your emotional and spiritual well being.
Sending much love and light your way. You will come thru this with a story and a ton of gratitude. You take nothing for granted. ♥
Vikki

[Smilyn]

Hello all... Your support is so appreciated!

My brother Gary has come out of the delirium and fever; a Blessing I am very grateful for. I still do not have details about the length of the new stump, which is a pivotal issue. The removal of his right leg, in = november of 2019, was an emergency removal due to a mistake made by a dr who was called to work on an indigenous reservation and did not pass on the correct instructions to the clinic he sent my brother to for care of a wound on the bottom of his foot. Gangrene set in. The surgeon told him in preop at an ER that he would come out of the operation minus his leg. Because gangrene is so deadly they left a very short stump; too little for a prosthesis. I don't know if that happened again, it's frustrating to be so far away. I hope he has enough to be able to balance himself a bit after PT. And I hope he can get into assisted living (he is top of the list for a good facility) where he can get good and regular medical care and proper nutrition. His situation has been very sad for the last five years. Crossing fingers for him. At least the malpractice suit for the other amputation settled a few days ago.  Amazing!

As for me; I met with the Dr of PT for an assessment and will have my first range of motion and scar stretching session tomorrow afternoon. She was impressed with the movement I already have and surprised, until I told her I had been through PT for a frozen shoulder in 2021 after Long Covid and had returned to some of the exercises slowly and gently. I had to; although Steve is cooking and shopping and being amazingly helpful, he is just not good at somethings, like ACE bandage binding of chest swelling over incisions where some areas are numb and can be tightened too much and some are super sensitive. I do a lot myself slowly and carefully becasue I have to. PT will not be easy, but it is necessary. They are referring me a lymphadema medical supply place to get better compression garments and be measured for arm sleeves. I do not need them at the moment, but was told that I need to have them on hand as I may need them at any time. I hope not, but will do what I must.

Swelling and pain are problems. I am taking lots of OTC meds for that, something I have never done in my life, and my stomach (already impaired) is really feeling it. Insomnia is a problem as well, and fatigue is not helpful in the healing process. That's why I'm up so early. But I remain infection free, which is a big deal. I am very good about keeping everything clean. Most incisions are closed. There is one small area that is worrying the PT Dr; she studied it so intently that I asked her why; she wants to watch it for necrosis. I'm hoping I don't have to deal with that. Fortunately, I meet with the oncologist next week who will also give an exam, so another dr can look at it. And I can send photos to my surgeon - who gets the reports. That oncology meeting will be a stressful one; I try not to think ahead.

There seems to be a lot of chaos in other areas of life right now; two good friends have had sudden dog deaths, another friend is having me talk to a friend of hers that I do not know who just got a breast cancer diagnoses, we have heard from a friend in the city that the empty lot running alongside our property will be rezoned with the intention of putting nine (9!) "Shotgun"style hones on it with an alley that would run along our fence for the garage side of those homes, and Steve's son and wife are fighting to keep their sheep alive after the horrendous dog attack which already claimed their goat. The vet bills and new fencing etc are just amazing, but the worst is the invasion of the sanctuary in such a horrible way. Thankfully, all the other animals are healing. Of course, the dog owners are now denying responsibility; a town meeting has been called, a lawsuit looms, and the two of them struggle just to keep going. Chaos; and nothing I can do about any of it. I just do my best to heal and stay out of trouble. Pain and insomnia are problems, but I do what I can. I also still have no real idea what I will look like becasue of swelling, but I think it is just about time to start putting silicone (!) on my scars. I had never heard of that, but apparently it is a thing.

We did not see any Aurora here. I have seen them before, so it was ok, but I did get up three times one night and go outside to look. That's a big deal as I am blocked into position on the couch to sleep without rolling; getting up and back in is a process. But I would have loved a glimpse. Such beautiful memories. Iris and azaleas are passing by. I made it out back an got a lovely photo of my lilac before it faded. Magnolias are opening. Geraniums are out, Red Hot Pokers are up. Summer is rolling in... following rainy weather. I hope you all have nature in beauty to look at as well.

And that's the news. I've typed too long, but the Tylenol has backed off the pain and says I can lie down again, so I will try. Big hugs to everyone. Stay well - or improve - whichever applies. No other options need apply!

[Huronna]

Thank you for such an informative post. I'm sure it wasn't the easiest thing to do, with all you are dealing with. Sounds like things are moving along quite well.
I'm glad your brother's law quit came through, so often they drag on for years and nothing comes of them. So sad about Steve's son and wife and all their animals.And the response of the dog owners is just so typical . I hope something is done in that case.
Keep up the good recovery.

[Grassy]

Hi Milyn! It sounds as if you are progressing. Recovering is hard. The fatigue is pesky. Listen to your body - eat when you are hungry, rest when it tells you to. Give yourself lots of grace and permission to heal.

For arm sleeves, there is a great company called LymphaDivas. I mention them because you are so fashionable, and the LymphaDiva sleeves do their job and are also very stylish. I got one that looked like I had a sleeve of flowered tattoos, and another one I had looked like a jean jacket. The binding is just a pain in the butt no matter how you slice it.

Sorry about all the chaos and the poor animals and all the craziness. Does meditation help you?

I am so happy that Gary is doing better too.

[Flagryl]

That is such a sad story about your brother, I hope he'll find some peace in a good assisted living facility. Yes, you have a tough PT road ahead. Hard. I have friends, too, who have just lost their elderly fur babies. Such trauma for older folks it seems. We did not stay up to see the lights here, they were present from local photos but I'm glad I went to bed. Take care dear Milyn!

[Smilyn]

Hello all... My brothers stump is short enough that he cannot turn himself n bed with it. He is not doing very well, although the lawsuit settled.  Assisted living will not take him if he cannot care for himself at all.  The sheep has survived and tough the attack on the sanctuary was brutal and horrific, they are moving forward; donations are helping them put in stronger and higher fencing than the 6 strand electrified that the dogs broke through.

I have been in a lot of pain and am worried.  I am on two AB meds now as my urine is dark and foul indicating kidney/liver trouble, and the L "mound" is not doing well; swollen and enlarged with a hypergranulation (example image is of a toenail) in the primary "T" incision join -blocking Draining.  I saw both the PT Dr (who did a movement and lymph massage) and the Oncology Dr this am and both are concerned that I have cellulitis on the L side. Both wish I had someone local for surgical follow up. Both mentioned ER as a possibility if things don't improve.  The oncologist also told me that we will be having a conversation about chemo in June unless my "oncoscore" is significantly less than he expects after he sees the labs drawn today.  I am tired.  I try to stay positive, but this having a surgeon three hours away who is great in person but dismissive in written exchanges with photos is less than reassuring. 

I have not heard from the lymphadema people at all.  I'll have to ask again.  I did get a referral to the mastectomy store, but not for several weeks.  They are overloaded.  Another friend of mine has just been diagnosed; it seems there are a lot of us!

I have not posted on FB as I have not had the energy, but I really wanted to get this up for my family here.  I hope you are all as well as can be; take care of you. I will do my best.  HUGS!

[Flagryl]

I'm so sorry about your brother, perhaps after a while he will accommodate himself better once there is more healing.

Yes, I wish you had local surgical followup too, can you call and get a med call or skype or Facetime or???. Had someone ordered a blood test? Perhaps ER is best option if you don't have a local doc, you worry me. Big hug to you!!!

[Huronna]

I'm on Facebook every morning checking for messages from some of my lucky traveling friends. and then I check to see if you have posted anything. I guess I assumed no news was good news and I'm sorry I was wrong, You sound like you are in a lot of pain and discomfort and having not been there, I can't imagine what you are going through.
Can you brother get home care? I remember when my brother was really bad, we had to get care 24/7 And a friend of mine in CA also for the past 3 years had to have someone 24/7 for her husband. I hope he can find the assistance he needs.
It's hard to even image what happened with those animals. just gives me the creeps. I hate animal abuse in any manner.

Thanks for stopping in, especially since it's not very easy for you. We miss you and keep you in out prayers.

[Grassy]

Love and prayers to you and to all the situations you are facing right now.
Please don't hesitate to utilize the services of the ER close to you. They are schooled in surgical follow-up and can help you. Even though I was only 35 miles from where I had surgery, I had to go to the ER many time during post-op and radiation and afterwards. If you are worried about anything, please don't hesitate to go in. It's better to go and have your fears calmed than to not go and worry.

[Smilyn]

Hello all... I haven't been sahring news on FB as it has not been great and it has been hard to type. I've had problems; especially on the left, have been on AB's for suspected cellulitis, possibly necrosis, and am heading back up to see the surgeon today. she has not been tremendously supportive visa text on the patient platform. The Dr of PT and the Dr of Oncology are the ones deeply concerned. And me. I'm very concerned.

This procedure is unlike any other. There is no implant inside me nor is everything under my skin flat. A pair of mounds are built by folding the redundant skin (not cut off after tissue is removed leaving them flapping.) The left side is slipping down my rib-cage. This means it sticks out like a cornered ridge below the incision line, and it means there is a hollow up above where the "skin" has been pulled loose from where it is supposed to be - leaving me able to feel and see the outlines of parts of my muscle/tendon structure there (looking like fingers reaching down under the skin). It's bunching painfully under my armpit. Personally I think it will require another surgery to put it back together, but a lot depends on what is under there and how healthy it is. I am 6 weeks out now.

I haven't had good things to say in other ways; there is excess under both arms that was not pulled in, so I have the "Dog Ears" or "Side Boobs" that I did not want. The incisions are not the same (curved vs straight) in the front and don't align in the center, and I have swelling that gets as hard as river rocks on both sides - which worries other docs too.  Swelling that hard is odd.  It's due to the folds of skin, I'm sure. But it's lumpy and strange and painful. So It's been hard to type and hard to figure out what to say. But today is the day it has to be said.  Anyway; If you want a photo, please send me a DM. I'm not putting one here.

In other news; my brother is most probably dying. The infection has returned in the new stump, he cannot maneuver his body at all, he is not lucid again. His wife thinks the end is near.

Steve had some spells where he "felt like he was literally sinking into the earth, or listing sideways", which is very worrying.

His son has had a terrible time with a pair of dogs that savaged his rescue animals and their bills are astronomical, and the goat that was killed was their special pet. The sheep bitten in the knee was dicey but was saved. Recently another goat, an alpaca, the family dog, some chickens also lost their lives in varying tragic ways, and two days ago his wife lost her favorite "brother," actually an uncle - one of those interesting family relationships based on the arrival of children at different times in peoples lives - 5 years older than her he was raised with her by her parents in the same house. He committed suicide; leaving a partner of many years and adopted children. She is devastated. There has been so much death and despair in their lives lately. We field that as much as we can.

Gotta go soon; I am headed up to see what the surgeon can do for me. I'm tired and worried and scared. And I still have the oncology appt at the end of June ahead of me...

Much love... I am holding my head above water, but that's about it.

Oh! GardenScapes. I actually put a game on my phone and play it in my lap with only my fingers moving to keep myself absolutely still. Nothing else keeps me still; I forget and move my arms arranging things, or moving myself, or trying to stretch... Down and still is needed. Does anybody else play it this game? I never have played such a thing before but find I am really enjoying blowing things up (!) and creating a little tidy world to walk around in.

HUUUGGGSSSS!

[Roni]

Many prayer for you Milyn, I just hope
you get better and better... Big 🤗

[Huronna]

I'd been checking on Facebook every day and had not seen anything, now I understand why.
I just can't imagine what you are going through. And on top of all your difficulties , those of your families.
It's hard for someone to totally understand all the anguish and pain you are going through. I wish I had that magic wand I always dream about.
I hope these docs can help you.

Here is an update on my situation, I had to compose this because too many people were asking and saying they wanted to call. I just don't want to be on the phone all the time, so I just sent this e-mail to everyone. Guess I should update you all also.

[Grassy]

Hi Milyn.
Boy, it's hard to be a pioneer huh? This is a relatively new procedure and you are such a rare patient anyhow. I am sending you all the best wishes and the most positive vibes. I wish I could fix everything, I surely do.
I am so sorry for all the bummer things happening to your family right now, and I know that all the best wishes are not enough. I wish I could fix it like a fairy godmother.

[Smilyn]

A quick update: I am released from PT with 75% returned range of motion. Swelling is still a major problem and nobody seems to know what to do about it. I look like I have B/C cup reconstruction but it's mostly swelling. I hurts and feels as hard as rocks to touch. It's worrying. I see the oncologist on the 28th and try to figure out what to do in the meantime - and what not to do as well.

[Huronna]

75% sounds good for a short period of time, Will more return? I read your other post, so sorry about your brother. Maye he rest in peace.

[Grassy]

Wow - you progressed through your PT with great progress! It took me two years to get through my PT, but they held mine until after radiation. Every patient is different. I hope you have a good meeting with Oncology. I am very sorry for the loss of your brother too.