Wednesday, April 27, 2011

Being a patient patient...

Being a patient patient is hard to do when you just want to be done and move on.  I had a productive, albeit frustrating (due to lacking patience), appointment with Dr.C the other day. He totally understands my concerns and is willing to do whatever necessary to help me achieve some sense of normalcy so I don't feel deformed or chronic discomfort where it can be avoided.  He did however say that I need to wait another month or so (next appointment is June 3rd) to see how things settle after this last surgery before we can make a decision about the next step.  He understands my concerns about us approaching the end of the current insurance plan year and me having JUST met all the deductibles, out of pocket maximum, etc and the fact that if we wait til after July 1 to take the next step it will cost me over $3,000 out of pocket (my heart sinks every time I think about this because I'm tired of being broke from medical and related bills). But I understand that this is not something that can be rushed either because the my choices involve surgery - one path is a series of additional minor surgeries, while the other begins with a major surgery involving several nights in the hospital and 4-8 weeks of recovery time. It's a big decision that will require thoughtful consideration and potentially a lot of planning (will need some help here for a few weeks since Bob is away so much and I won't be able to lift and do normal activity for a few weeks if we do go with the major surgery).

We talked through several options, the risks and benefits of each, and narrowed it down to two, one of which I was fearful due a risk that became a reality for someone I know but Dr.C was able to alleviate my fear and explained that my risk level for that particular complication was actually less than one percent which is not any different from the risk of that same complication with the current method of reconstruction and surgeries I've been having so that was a big relief and that alone put my mind at ease about this decision that I'll make in June.

Meantime, I'm not allowed to lose any weight because one of the options requires use of my current belly fat to form a new left breast and apparently I barely have enough to do it even though I'm carrying an extra 20-25 lbs on my frame right now.  So I'm hanging up my 17 day diet effort for now - part of me is thrilled to welcome carbs back into my daily life but the other part of me is bummed that I'll be feeling like a chub-a-lub through the summer. ;/  Giving up my ovaries last summer meant giving up my metabolism and I've packed on about 12-15 lbs since then which I really want and need to shed as soon as I can.  I can't give up exercise though as that's critical for recurrence prevention so this week I resume exercising but will focus on doing just enough to raise my heart rate for the 30-40 min/day necessary.  Walking instead of running. I'm OK with that as I've taken a break due to surgery and travel and it's been tough getting back into it anyway so this just forces me to resume gradually and I'm good with that.

Patience isn't my strong suit but this journey (plus becoming a mother) has forced me to develop more patience than I ever imagined I would have.

Dear Lord, thank you for Dr.C and the many other brilliant physicians and nurses who provide me with excellent and compassionate care. Thank you for infusing patience and understanding into my heart and mind when I need it most, and thank you for your unconditional love and guidance as I continue this journey to restore my body and seek to use my experience to glorify you and perform your will. Thank you for the most supportive and amazing husband and family and friends. I feel truly blessed and honored every day knowing you are for me and with me always. In your son, Jesus' name, I praise you and thank you. Amen.

Monday, April 25, 2011

(Re)Construction zone: proceed with caution

I haven't written about my most recent reconstructive surgery (which was on April 14th), largely because I'm so upset about it.  Don't get me wrong, I have one of THE most brilliant reconstructive surgeons in the area and at UCLA and he is also incredibly compassionate and caring - I'm very lucky. Dr.C has been amazing. He lays out my options, informs me of the risks and benefits of various approaches to the many steps of this process, is very talented and a great listener, and has been willing to fix things that I think many other surgeons might not bother with from what I'm hearing/seeing when comparing experiences with other breast cancer survivors.

Reconstruction has been a lengthy road for me, involving numerous surgeries. The approach I chose was bilateral mastectomy with immediate reconstruction with tissue expansion and implants.  Overall it has been a pretty straight forward process with no unexpected complications but I have had several challenges trying to achieve symmetry in shape, size and comfort because of the simple but aggravating fact that radiation changes the skin and tissue, making it less cooperative, increases lymphedema issues, etc. I handle surgeries/anesthesia really really well, thank God.

After this recent surgery, the right side finally looks wonderful - really awesome actually.  Unfortunately, in spite of our many attempts to fix it, the results for my left side (the radiated side) are not great. The appearance and feeling is actually worse than before this past surgery and that is why I haven't posted to the blog about it yet - every time I think about it I break down emotionally. Then the fact that I'm emotional about this upsets me even more because I began this journey not caring about my breasts' appearance - all I cared about was surviving this disease and being here for my family.  But I let myself be convinced by others that I would care later on and to just try to get the best results possible and I could always undo it later on if it didn't turn out well or whatever.  And then when something didn't look right I would hesitate to raise it but then would be encouraged to speak up because this is the only time it can be addressed and I have a right to get great results.   So I have endured numerous surgeries (which are just major inconveniences to my work and personal life schedule - not just for the actual day of surgery but for weeks before and afterward because I have to stop taking important supplements 3 weeks before surgery and then for 3 or more weeks afterward I'm not supposed to lift Cooper and have to avoid too much physical activity like working out till I'm cleared for those things -- so, it's a major time investment that requires garnering the help of others with Cooper since Bob is away so much). Again, I handle surgery/recovery really well thank the Lord or else I might have put a stop to this a year ago.

So why is it (left side) worse than before? Well mainly because I have lymphedema swelling that causes that side to be bigger and that's whey we've gone down implant sizes two times on that side (this last surgery included downsizing the implant) and the previous downsize was the right decision but this one not so much as the breast sits higher and remarkably smaller than the right side now.  Additionally, the lymphedema swelling combined with the toughness of the skin at the incision has made it such that the shape of the breast is yucky - the profile view reminds me of the tip of an elephant's trunk. The swelling has caused the reconstructed nipple to practically disappear into the incision because the areas above and below the incision swell and hang over the incision line where the nipple sits.

OK and that's just what's wrong with how it LOOKS. I haven't even mentioned how it FEELS - UGH. I feel like my left armpit is being held up by a meat-hook that's being tugged on and causing a pulling/twisting feeling of the breast.  Three days ago Bob pointed out to me that I had been walking around nearly 24/7 with my right hand in my left armpit and/or stroking my left side around the clock (to try to move the fluid out of the breast and down to my side).  I can only imagine how it must have looked as I walked around Trader Joe's and Whole Foods last week with my hand in my pit or on my breast without me even realizing it at the time ;/. But it just feels terrible all the time - it felt yucky or "gunky" as I often describe it before, but now it feels worse.   As of this morning it feels a little better than it has this past week but I wonder if that's because I know I'm marching into UCLA today to get some options/answers.

Frankly, I'm sick of this process. I want to be done. I want to move on with life and not be subjected to all of these surgeries and not have this daily reminder (aching, swelling, etc) that my life has been forever turned upside down by cancer. I told Dr.C during my pre-op appointment that if this one doesn't do the trick, I'll probably ask him to take the implants out and forget about having breasts.

But here I sit, sobbing like a baby knowing that if I opt for NO breasts I'll be just as sad and distraught as I am about having an ugly breast that aches 24/7.  I also know that the alternative between those two probably

I'm trying to not make any assumptions about any of this  and you can see my mind is already racing about all the things that could happen if we start over on the left side but I'm terrified that the next decision I make about this will forever change things for me/us - of course it could be for the better, but it could also mean for worse if complications arise.  I fear that I would choose to start over on the left side and have complications that would negatively impact my health because I wasn't willing to put up with an unpleasant appearance that could be hidden with layered clothing and prosthesis (which are not cheap nor comfortable).  It's just all so emotionally confusing and overwhelming so Bob is coming to this appointment today. I need him to be there and hear ALL of our options, pros/cons, risks, etc.

Please pray for guidance for this decision...that God will lead us to make the right choice and that I'll be at peace with it and able to move forward and focus on more important things.