Surgery is now scheduled for September 27th. I am happy with this date.
I will write more as I know more. Pretty tired right now. Thank you for your continued prayers.
Love and peace,
Surgery is now scheduled for September 27th. I am happy with this date.
I will write more as I know more. Pretty tired right now. Thank you for your continued prayers.
Love and peace,
Thank you everyone for your emails and messages. It means so much to me to hear from friends and family. It is always so encouraging and very, very uplifting.
I am waiting for a surgery date. I am tired. The past couple of weeks have been a bit painful (even though I have definitely had some days in the past couple of weeks where I was able to get out and have some fun). I try to focus on those days, actually, it is quite easy to focus on those days. I am very good at forgetting the bad ones and even not remembering the bad days. That is a gift for which I am extremely grateful.
I sometimes go back and read past blog posts and I am shocked by what I experienced on a given day of treatment or just reading about past shenanigans with doctors, insurance etc. All of those difficult and sometimes horrible days, are for the most part a blur to me. Instead, it is the times that friends and family came and stayed with me or extended some kindness to me, or the days when I could run again, or ride my bike again or lift a friends baby high up in the air again, or chase after my nephew . . . those are the days that I remember and cling to and it is those days that I am so grateful for. Thank you.
I am so grateful to all of you, my friends, my family. I know I have yet to reply to emails this week, please forgive that, I am still exhausted from everything of the past few days. I have work to catch up on and will have to do that first and of course there is the pre-op hop that I need to do . . . getting ready for my next surgery.
I will let you all know the surgery date as soon as I find out. Thank you again for your love and support.
This Saturday I will be attending the memorial service of a friend. I am sad that he is no longer with us. Life is short, go live it.
Much love to you all,
I saw the surgeon at Cedars Sinai today. He has agreed to take me as a patient and believes he will be able to provide me with a great result (he is very experienced in dealing with radiated skin . . . my prior surgeon was not and that is how we ended up with some complications).
So, my new surgeon (YAY, I have a new surgeon, one I have confidence in, I am so ecstatic) took some fluid out of my right expander to relieve some of the pressure so I am no longer at a high risk of my skin breaking open (having the expander break through my skin). Surgery still needs to be soon, but, it can wait as long as three weeks now. The hope is to get a date in mid September. However, my new surgeon has a number of conferences to attend in the next month, so, scheduling something is the challenge. But, they seem to be confident that they will be able to get me in for surgery within the appropriate window.
This surgeon is fantastic. Everyone in the office – from the front desk person, the nurse, the physician’s assistant – everyone was just so nice. I felt as though I was absolutely their priority. It was a great experience. So, I feel really good about my decision. Now, I have to deal with my prior surgeon . . . that will not be so easy. I have had a relationship with her for almost a year and a half now. It is going to be tough – telling her that I am letting her go. But, I have to do what is best for my body as I am the one that has to live with it.
Thank you everyone for the prayers and positive thoughts.
I am so tired right now . . . still up in Los Angeles, waiting for a ride, fortunately I have a late check out . . . 2 pm. I think someone is coming to pick me up, but, not exactly sure. In the meantime, I am going to get some rest. I am so relieved and so, so tired.
Love and peace,
Well wish me luck, in a few hours, I will be meeting with a surgeon at Cedars Sinai. I am staying up in Los Angeles, just a few minutes away from Cedars. My appointment is early and so I didn’t want to deal with the commute early in the morning. My Mom is here with me, we are staying at a nice hotel.
We will leave from here at 8:00 am in order to allow plenty of time to get to Cedars.
I am really hoping that everything goes well . . . obviously. I worry that this surgeon will say that he can not help me. I hope that he will be able to take me on as his patient and fix what is wrong.
Meanwhile, back at the ranch . . . the “okay corral” where I don’t think of such things or worries . . . I had a wonderful weekend. Friday evening I had a nice long visit with a friend (on the phone, while I was horizontal, resting). I learned a lot about my friend . . . this past year has been one of . . . I suppose to some degree . . . by necessity . . . a bit of self absorption . . . yep, I have been a bit of a it-is-all-about-me-cause-I was-diagnosed-with-cancer type of person.
But, Friday I got to learn some things I never knew, listen and enjoy my friend’s stories.
Saturday I did what I could to get my place ready for surgery. Physically I wasn’t able to do a whole lot, so I brought in a cleaning team, they were great, progress was made!
Then, Saturday afternoon, I was able to join friends of mine on a Dufy boat (an electric boat). We cruised the Newport Harbor. It was really nice and real relaxing.
Today I went out to brunch with a friend and then we went to the Sawdust Festival. It was a really great day.
So now I am sitting up at 1:30 am. I NEED to get some rest! Hopefully it will be very soon!
Please keep me in your prayers!
Love and peace,
Tomorrow morning I see a specialist up at Cedars Sinai who will hopefully agree to take me on as a patient and get me into surgery asap. Please say some prayers on that for me, I greatly appreciate it.
My parents and I are driving up to Beverly Hills this evening and will stay the night there (about 3 or 4 miles from Cedars Sinai) so that we do not have to try to make the commute from Orange County early in the morning (I have to be there at 8:30 am) on Monday.
In the meantime, I am taking it pretty easy. I saw some friends yesterday. And today I am having brunch with a friend of mine and probably a walk at the beach. I am not sure, I am told there is a surprise (a surprise that is within my physical limitations, I am assured). So, it looks to be a relaxing day I think. There will be the drive up to Beverly Hills of course. That is going to be a bit far. But, better to make the drive tonight than to have to struggle with it, and all of the traffic, tomorrow morning.
Please keep the prayers coming. I really need it. I am feeling pretty desperate right now . . . this ticking time bomb and all and not yet having a surgeon qualified to handle this complication on board, taking me on as a patient yet. So, I am very nervous about what the surgeon tomorrow will say and do. Prayers, prayers, prayers . . . PLEASE!
Much Love and Peace,
This past week has been a rough one. Complications have come up necessitating that I have an earlier surgery date and also a new surgeon . . . one who has the expertise to deal with the complications that have developed.
It has been a really intense week. Just so much to deal with and my head is simply reeling. I am truly overwhelmed. But, it is coming together I think and I even think that tonight (although it is already 12:30) that I may be able to get some sleep. Sleep has been a real struggle the past couple of weeks. It has been especially difficult this past week.
In spite of the week I have had, today, I had a really good day. I sent out an email update on my status, received lots of nice notes back from friends, had lunch with a dear, dear friend (who found a lunch spot just blocks from my afternoon medical appointment . . . how sweet is that?) and had a very successful appointment with the pain management doctor.
I experienced a lot of pain with the past surgery, it was the most pain I have ever experienced in my life. It lasted for weeks and nothing seemed to control it. So, this time I decided to be proactive and see a specialist for the pain. I feel really good about this . . . I was able to discuss my concerns and then my doctor came up with a plan for pain management for me. I have already picked up the prescriptions and have several options and combinations of things to utilize. I am not a fan of taking any medication . . . so this whole cancer ride has really been kind of surreal for me . . . I never thought I would every take any kind of strong medication . . . I rarely have every taken aspirin or tylenol. So, this whole experience has forced me to be willing to take medications . . . as much as I don’t like to take any medications.
I don’t know if the plan will work or not, but, I have to think that it will go better than the last time, since last time I didn’t have any kind of plan. I wasn’t even aware that there were doctors that specialized in pain management.
Anyway, all in all, it was a fabulous day. I am very happy about it being the end of the week and I am very how for how nice Friday turned out to be.
Now I just need to law low for a bit. I need to figure out how I am going to get all of the way up to Cedars Sinai at 8:55 am on Monday morning . . . ugh.
I am going to see about staying over night with my parents somewhere near Cedars. I think it will be easier than driving up there on Monday morning and having to deal with all of that traffic. I cant drive that far by myself anyway, so my Dad is planning on driving. But, we would have to leave so early in the morning to get there and the traffic would be so heavy at that time of day.
Well wish me luck and please continue your prayers. I greatly appreciate it!
My phone just rang . . . I had been asleep for a few hours and the phone just rang and now I am up . . . no more sleep for me today. I don’t go back to sleep easily. Who calls at 7 in the morning? Well, I know who does . . . and historically, I have always been an early riser, so my caller completely expected me to have been awake for a couple of hours by now . . . but, instead, I had only been asleep for a couple of hours.
Maybe I can sleep a bit again. It is not something that is easy for me to do . . . sleep during the day, or go back to sleep once i have woken up. But, maybe today I can do it. I am so tired.
I have an appointment with a pain management doctor this afternoon. I had a lot of pain with the last surgery. So, I am hoping that in seeing this doctor today that I can get some help getting the pain under control. That would be wonderful. So, we shall see how it goes.
Other than that, I am just trying to lay low and keep my chest intact before surgery . . . when ever that is. At the moment, the plan is to see a surgeon up at Cedars Sinai on Monday and hopefully he will be able to help me and will take me on as a patient. I have no guarantee that he will take me on . . . his office person told me that he has to see my skin to tell he will be able to help me and then it will be an issue of being able to schedule me as he is very busy. I am very, very nervous about the prospect of going in there on Monday and perhaps hearing that he can’t take me on. Then what? Where will I go then?
Step by step I guess. It is just that there isn’t time now to continue interviewing doctors and running around from one appointment to the next. And, so many take vacations at this time of year.
Well, enough worry for one morning. Can you see why I am not able to just go back to sleep?
I hope everything goes well.
Please keep me in your prayers.
So the past week has been a rough one . . . the loss of a friend, complications with my reconstruction and trying to figure out what to do about it, dealing with seeing the very shockingly different appearance of my skin after a procedure gone bad, second opinions, dealing with insurance, navigating all kinds of waters this week. Lots of emotions and fears. The things I thought would all be gone once I had clear scans, once I heard the word cured.
It is a funny state to be in . . . new beginnings, new people in my life and wonderful things ahead . . . but, still just trapped within this distorted body, trapped by the surgeries to come . . . yes, now I am told that there will not be just one more surgery . . . but, at least one more after this next surgery . . . NO. That is my answer, NO.
That is one of, but, not the only reason, I sought out today’s second opinion (which is actually my fourth reconstruction consult, so really, it is my fourth opinion). But, you get the point.
So how did today go? The surgeon I consulted with today told me that I am a ticking time bomb, that my radiated skin was over expanded (my prior surgeon went too far) and that I need to go to surgery as soon as possible. The ticking time bomb part is that the skin can break because it is so thin and is not “viable” as he put it and so we need to go to surgery as soon as we can. But, that is not so easy. There’s a lot more to this story, but, I am, quite frankly too exhausted to get into it.
I have an appointment on Monday morning with a very experienced and highly regarded reconstructive surgeon at Cedars Sinai. But, he will not make a decision about taking me on as a patient until he sees my skin. Meanwhile, I have to wait until Monday to even have an answer (and the surgeon I saw today said, that ideally I would be in surgery within a day or two tops). But, he conceded that this was not likely going to happen. So, I would have to wait.
So, I am waiting. There is a possibility, if the surgeon I am seeing on Monday decides to take me as his patient, that I could have surgery on Tuesday. Earlier this week, I was told surgery could be tomorrow (Friday). Now that is off. And, so in the meantime I just need to take it easy and avoid doing anything that could cause either impact with my right side or pressure in that area. Driving is to be limited as much as possible and limiting moving around in general will likely decrease my chances of a rupture to the skin. I was given instruction for what to do in the event that the expander breaks through my skin . . . was told to purchase gauze and tape to cover the area until I can see a surgeon. If this does happen, then (I am told) that I can get by for about two days before having to have surgery.
It is kind of crazy making really . . . if you let it be. But, I just can’t get worked up about it too much. I have to get through all kinds of hoops to just get a new surgeon (or, perhaps, return to the surgeon I have had this past year. I don’t want to burn that bridge in case I run out of options). So, it is all a bit sketchy.
I have a birthday party tomorrow night to attend. I want to go, but, I am not sure that I can do it. I have another medical appointment tomorrow afternoon and will ask about it then. I would at least like to stop by her party for at least a little bit. But, I don’t know if I will be able to. It is my friend’s 40th birthday party. She has been such an amazing friend to me. She has helped me so much this past year plus.
I really, really want to go to her party and wish her a happy birthday in person. So, we shall see.
I am also supposed to see a friend of mine for lunch tomorrow prior to my doctor’s appointment. We are meeting about a block from my appointment and I need to eat and there isn’t likely any risk that I will bump into anyone, so I think I can still pull off lunch. But, I will see how I feel in the morning.
Well, I am just a rambler these days . . . the sleepless nights really make it hard to stay on track with anything. I hope to get some sleep tonight. But, sleeping right now makes me a bit nervous. I am afraid I will roll over on my side and in doing so cause the expander to come through my skin. That would not be good. So, I have been intentionally (since Monday’s expansion-gone-bad) stayed up all night every night. I would sleep for a half hour or so, but, really . . . that has been it.
It is to the point where I fall asleep sitting in a chair. So, perhaps tonight, I may just need to sleep and take my chances.
Please keep me in your prayers. I greatly appreciate it.
Love and peace,
Well, today was pretty crazy. I woke up and realized that I can not proceed with my current surgeon . . . not without pursuing another opinion. There is something wrong here and I have to trust my gut in that regard. Have never regretted trusting my gut . . . have only regretted not listening to that voice in my head . . . or in this case . . . the pain and discomfort of the most recent expansions and the visual . . . the skin does not look good right now . . .
I don’t know if this is “normal” for what I have been through, but, I am not keen on my surgeon’s recent handling of things . . . and who wants to hear this: “Oh, I have seen worse, a lot worse” and “I will do my very best, but, I can’t guarantee the results” . . . this all coming from a surgeon who promised the moon . . . or rather, I guess, two moons on my front portion. I never wanted her to turn me into a barbie doll or whatever she claimed she could “do for me” (she has, from day one, tried to sell me on going bigger, “upgrading” . . . as if having implants, after a mastectomy could ever be viewed as an upgrade).
Don’t get me wrong, I am not mourning decisions . . . that I opted for a bi-lateral mastectomy, that I chose to go ahead with radiation . . . I did these things so that I would have the optimal chance for being here, where I am today . . . and hopefully to be around for many years. The point was never to get an “upgrade”.
That being said, I believed my surgeon when she told me that I could go up a size . . . which to me meant that if I could go up a size, then surely, I could stay the same size as before . . .
Well, things have changed . . . apparently. And, this isn’t all about “size matters” . . . it is about being told things and having these things constantly modified, changed, or even forgotten (I swear I have had her tell me that she never said certain things that I KNOW she said to me) over time. I know I am one of many patients. I get that. I know that it is my job to be a good patient . . . to be involved, to follow directions, to ask questions . . . and right now, my job is to question, question what is going on and where to go from here.
My skin was damaged from the last expansion. Skin can die . . . something that is called necrosis. If this happens, you lose that skin and it creates, understandably, “issues” with reconstruction.
Ever since Monday’s expansion it has been full time, task mode. My Mom has been incredibly helpful in navigating my insurance, talking with my case manager etc. to get some help, intervention.
So Thursday, I will be seeing a top reconstructive surgeon for a second opinion. I also have an appointment in the afternoon with my existing surgeon . . . not sure how she is going to react to my getting a second opinion, but, I don’t care about that. It is funny, no doctor would ever proceed without second opinions and yet they expect their patients to proceed all of the time, just with their say so. Nope, not happening.
I am hoping that he is going to tell me things are fine and that my surgeon is doing a good job, etc., etc., etc..
But, I need to get this second opinion and I need to be prepared for the possibility that he will not have good things to say. My current surgeon wants to see me tomorrow to decide if I might need to go to surgery this weekend (early). She will base this decision upon how my skin looks.
I went to a department store today (bear with me, this is related). I don’t really have any clothes that fit so well these days . . . my body has changed, I am more trim in places and well, the upper portion is obviously different . . . so many of the clothes that I do have in my closet (that will likely be wearable again some day) are just not appropriate today. I try on clothes that I used to love to wear and I look in the mirror and see a distorted, disfigured version of myself.
I have plans with a friend on Friday and I would like to just have something to wear other than the same one pair of jeans that still fits (everything is too big for the most part). So, I went to Kohls . . . it is the closest store to me and I can’t drive more than about a mile right now due to the complications in my right side. Plus I had a 10 dollar off coupon . . . woo-hoo!
I found some things to try on. Undressed in the dressing room and nearly passed out . . . really . . . when I saw my reflection. My right side looks like I have been beaten up . . . and badly. Red, blue, purple, black . . . I’m thinking this is not good.
I don’t know if it is going to be a fixable situation or not. Dr. Z was looking at it pretty closely on Monday and saying . . . well, this skin is going anyway since we will create a nipple here, but, the skin below, hmm, I don’t know. I will do my best . . .
Crap. “I will do my best” . . .
Of course she will do her best, but, this is 180 degrees from even just a couple of months ago.
Anyway, back to the dressing room. I was shocked . . . either my skin has become dramatically worse, or this is the first time I have seen it in bright lighting. I felt my body about to go to the ground. I sat down and sobbed. I know that the women in the room next to mine probably heard me. I didn’t care . . .
After I sat for a bit, I gathered up the courage to look a little more closely . . . it didn’t look any better or any less scary. Of course, I am not a doctor, I don’t know what this means, I just know that it does not look good. And, it hurts.
All I could think was thank God, thank God that I already had a second opinion scheduled for tomorrow.
I do not think that my surgeon is experienced enough in working with radiated skin. She IS an excellent surgeon. But, radiated skin is different and can only tolerate so much stretching. The skin looks pretty bad and I am so afraid that I am going to lose it, lose the ability to even have reconstruction.
Please, please, please say some prayers for me on this.
Because I am petite (not a lot of extra weight), if I lose skin from my chest, then there isn’t anywhere else on my body that can spare some skin to use in this area (women often get a tummy tuck and have skin, fat and muscle from their stomach used to create a breast). But, in my case that is not an option. So, I am pretty much limited to the skin that I have on my chest now and that skin is not looking well.
So, a 10 am appointment (for which until just a few hours ago, I did not have a ride . . . Thank you to the Shahon family, yet again . . . their generosity and kindness is seemingly endless) and another appointment at 3:00 pm in Irvine (another friend of mine will take me to that appointment). I am dragging friends all over the county tomorrow.
So, what will I do if my second opinion doc says things don’t look good? I have no idea. But, my Mom was able to find out about another option I can have with my insurance . . . Cedars Sinai . . . for reconstructive surgery.
So, it appears that I have some options here. And, were it not for my Mom, I would not have even known. And, here she is . . . doing all of this for me when she is grieving the loss of her friend Bill. I miss him too. But, I don’t live two doors from his house. My Mom saw him everyday, my Dad would see him often as well. He was such a good friend to them and to me. And, my parents were such good friends to Bill.
I know they are hurting, missing him . . . my Mom walks their little dog Toby past Bills house everyday . . . he pulls to go to see Bill, but, Bill is not there anymore. Oh my heart goes out to my folks having to miss their friend. I miss him too.
This posting had to be about the most ridiculous of rambles . . . probably does not make any sense at all. But, I have been up most nights for several days now. I have only slept a few hours since Monday’s expansion. Too much physical discomfort. And now, well, I am just in a lot of pain, especially the last couple of hours. I am so grateful that I have a morning appointment with the second opinion doc. I don’t think I could bear to wait much longer.
Well, if you are still reading, thank you. Leave me a comment . . . if you feel like it. I always appreciate comments.
Thank you for reading . . . that is, if you got this far
Please continue to keep me in your prayers, I really need it.
Much love and peace,