Thursday . . . GRATEFUL . . .

Today I have an appointment with my oncologist, Dr. Hurvitz, up at UCLA. My friend is driving me up there . . . thankfully, as there is no way I could make the drive myself now. And, to think I thought a few weeks ago, I was going to take my nephew to Disneyland sometime before my surgery . . . right. Well, there is time for that later. I wish I could keep my promise to take him this month, but, we will just have to try to go in November.

I am pretty uncomfortable these days. Movement in my right arm is much more limited now. It is painful to drive, painful to do a lot of things and quite uncomfortable to try to sleep. Not that it has really been comfortable sleeping for the past year. Ever since the mastectomy and the placement of expanders, I have not been able to sleep on my side or stomach . . . can only sleep on my back. Compared to the big stuff, it is nothing. But, I can not wait until the day I can sleep on my side or stomach again. Especially now, since sleeping on my back is uncomfortable right now since my right arm will not lay flat . . . if that makes sense. The pectoral muscle on my right side (which was radiated, along with my skin and chest wall) is so tight that I can not straighten out my shoulder or arm. It has been like this to some degree for a while. However, now it is quite a bit worse.

I am not sure what that is about . . . the fact that it is so much worse right now. But, I sure hope it will improve after the surgery. I would think that it would improve since there will be new muscle and new skin brought to the area. I believe it is the muscle (that continually shrinks and tightens up since the radiation) that is to blame for the limited movement in my shoulder and arm. However, the skin being replaced in some areas there ought to make a difference as well since the skin just isn’t good there anymore. It really hurts quite a bit. I don’t know exactly how much of this is surgeon error or simply a cost of the radiation. But, none of my friends who have had radiation are experiencing any of this . . . so I am thinking it is not normal.

Well, I KNOW it is not normal . . . one of the second opinions I sought a couple of weeks ago told me that he could not perform the repair type of surgery that I needed and said that there was only one person in Orange County that he would send his wife or daughter to if they were in my shoes. The other person he would be comfortable sending his wife or daughter to is the surgeon I have up at Cedars Sinai. I am so grateful to have this surgeon. At least I know that whatever the outcome, it is the best, given my circumstances, that I can get at this point.

I do believe that had I gone to this surgeon from the beginning that my outcome would be better, that I would not be going through this right now. But, that was not an option. I am only getting this surgeon, with all of his expertise, because my previous surgeon messed up (she just does not have enough experience dealing with radiated skin and as a result she did some things that should not have been done . . . some of that having caused permanent issues for me).

If I think about it in those terms . . . it is very upsetting . . . knowing that I now will have some kind of patch work/quilt kind of thing going on to make a breast on my right side . . . and all because skin was stretched to the point of killing it, making it no longer viable. But, I can’t think about it that way, I can’t really think about what could have been, especially when one really never knows what “what could have been” even means.

I could have been dead. That pretty much puts the whole thing in perspective. I could have been dead six months ago and never had any of the experiences that I have had in the past half year. I don’t mean to sound morbid. In fact, I mean to sound grateful . . . because that is what I am . . . simply grateful . . . grateful to be here . . . grateful for the time with my family and friends and grateful for new friends.

On March 6. 2009, the day I was diagnosed with this disease . . . I was sitting in my office, waiting for the call from my doctor with the results from a biopsy. A friend of mine was sitting with me. His wife, a breast cancer survivor, and many of his friends also breast cancer survivors. Once I got the bad news, he told me, “Lisa, this will be the worst year and a half or two years of your life. But, you will get through it, you will get through it.”

I remember thinking, how can that be? How can it be that it will be the “worst” period of time in my life. No. It won’t be.

Granted, chemotherapy was not fun, the mastectomy was not fun, radiation was no walk in the park and the year of Herceptin infusions was not a joy either. BUT, there were so, so many moments with joy. My summer of chemo and the daily visits from two children who walked my dog (Ben and Jessica – who by the way, also took out my trash, did dishes for me and mostly, just cheered me up . . . Ben filling me in on the latest baseball scores. or did I hear about that grand slam – “you know what a grand slam is, right?” “Yes, Ben”, with a smile, “I do.”  And both telling me about the latest movie . . . if I recall correctly, they were gearing up for the latest Harry Potter movie . . . and just the details of just a normal summer in the life of an eleven and twelve year old).

And there was the day I felt like crab . . . a dear friend delivered a feast of crab. That was probably one of the most enjoyable meals of my life . . . when you haven’t been able to or wanted to eat and then suddenly there is something that sounds good to you . . . and someone finds it for you . . . at nearly midnight . . . well, you really enjoy it like never before.

There were family gatherings, times I will never forget, generosity of friends, gestures beyond gestures, my web designer (and now friend – although we have never met in person) running marathons in my honor, friends driving me, coordinating my transportation and care (staying over night with me during the chemo weekends), cooking for me, doing my laundry, doing everything I could not, cards and letters and books that arrived in the mail from family and friends and from friends of my friends and family (people I have never met, wishing me well) . . . and, my parents, what can I say about my parents . . . what can I not say . . . they are truly the most remarkable people I know. There was just love everywhere . . . so yeah, it was the “worst year and a half ever” . . . 🙂 (Please insert sarcastic tone).

No, it was not easy and no it is not yet over. But, I am so grateful for so many things and for so many people. So as I sit here, contemplating (very little actually about it) my patchwork breast to be and the physical pain I am now in, I think back at everything I have been through and all of you who have literally pulled me through all of that and I am simply in awe, simply grateful and very happy to be . . . to be here.

Love and peace,

Lisa