Today’s Washington Post front page article <—highlights a scene I see every week when I go to Walter Reed for treatments. Young men who have lost a part of their body to a battle they did not choose, much like me. They have lost friends to the same fight, much like me. They “soldier on” to become the best they can be, much like me. They are coming to terms with their new bodies and their newfound identity, fighting an emotional battle as well as a physical one. They do so with such strength and courage and a dose of humor as well, in an effort to cope with this traumatic event in their lives. I am reminded that my wounds, while hidden, are nothing compared to the very public display of their wounds and the life altering uphill climb that an amputee must confront. Finding a glass half full life is something these veterans have somehow managed to embrace. The alternative is a future mired in self pity and isolation. They don’t want to go there, and neither do I.
I have always loved Mary Engelbreit’s artwork, but this particular print has taken on new meaning for me! Just when I wish I could go back in time to where I use to be “before” cancer, THAT road is no longer an option.
Imagine you fall asleep and one day you wake up in a strange place you’ve never been before. None of your loved ones are there with you. They peer through windows all around you to express their love to you, but they can’t be there really with you. Their voices are always at your ears, you know they are there, but somehow they seem far away. Everything is unfamiliar and the language spoken there is odd ,and terms are used that you’ve never heard before. Words like “recurrence” and “sentinel” and “adjuvent”. You look them up in a dictionary just to know how to spell them! You find yourself learning the language, but you don’t feel like you should be speaking it – it is as foreign as it ever was. People look different here, and soon you look just like them and you wish you could just put on dark glasses and hide. You liked the way you looked before and didn’t want this change. But it’s here. You’re here – and you can’t wake up. All around you are reminders of where you use to be and yet you can’t reach that place. You’re stuck. Like a bad dream you can’t escape, and it never seems to end. You know the one (?) where you scream and no sound comes from you mouth. You don’t have a say in this – you must walk this road in this strange place.
Well, that is what “Cancerland” feels like right now. A very strange place I wish I didn’t have to visit. Like a plane layover in a town that is less than desireable , but your connecting flight takes off without you and leaves you standing there with no way home! I have met lots of other people wandering around here ,but they are all sad and suffering too. I’m not sure how much we are helping each other but it’s nice to know that there are others who don’t belong here. We cry on each others’ shoulders and tell one another it’s all going to be okay. We are here for the newcomers who have many questions, and somehow we feel like we know more than we ever wanted to be able to share with them, and yet we do. When can I go back to the familiar?… To the innocence of a life that will go on forever, and never worrying that it might not. A year from now? Two years from now? Never? I don’t know. Nobody knows and nobody can tell me. There are no promises here.
Today I had my post op appointment as well as a 6 month month follow up with my original surgeon’s office. But this being a military hospital, of course, my original surgeon has moved on so I met a new doctor and his 2 year med student. We talked about “what next” and he will have me get an MRI 3 months from now. He told me that the lobular cancer I had is more commonly found in the other breast as a recurrence. That wasn’t too comforting. He told me the lack of motion and tightness I am feeling in my arm from the lymph node biopsy site will have to be treated with physical therapy but that my plastic surgeon would be the one to refer me for that after my final post op check up in a month. Goody goody :~ – one more place to have to be now…more appointments, filled up calendars and drives through D.C. traffic. I’m hoping maybe I can do that part locally. I have a Herceptin infusion again next week. Until then, I am trying to take it easy and enjoy summer, get together with friends old and new, and look forward to a beach getaway soon!
The Valley Of The Shadow <—-click here to see video I created
Well, it took me more than 6 months to gather this courage. I called my doctor who referred me for the mammogram 2 years ago but missed the words “incidental mass”.
I started off by explaining that I didn’t know the procedure of who gets what reports and whether or not she was even the right person to talk to, but that the radiologist and surgeon I saw at the time are no longer with those practices. We talked for quite a long time, and without putting her on the defensive, I explained to her what I felt happened in my case, and that my radiology report had slipped through the cracks. At first she kept saying she had done all she could at the time and that once it was sent out on a referral basis, it was out of her hands. I explained to her that I felt it her duty to know what was happening with her patients. She said doctors are human. She rhetorically asked me if she now has to look over the shoulders of the radiologists and I said, “apparently so”.
She said she reads a lot of mammogram reports and always TRIES to read at least the bottom line (final impression from radiologist), but I said obviously that’s not enough. My report’s words were in the very first line, not the bottom line. The bottom line was his impressions on what I was being sent there for, a look at a palpable mass…but the finding he mentions were in another location. As it turns out, even the palpable mass was cancer! I told her that in my experience down Breast Cancer Road, I have learned something common amongst all breast cancer patients. They are both a.) A woman, and b.) have had some type of change on their breast tissue. Couple this with a mammogram finding or a lump and I believe an MRI or biopsy should be ordered. I asked of her that she begin doing the following with her patients:
“When you send a patient for a mammogram, PLEASE tell her to get her written transcribed report, and that if she reads anything concerning, to please contact you so that it can be followed up.” I said, “please do this particularly with young women with dense breast tissue….their cancers are not always seen on mammogram or ultrasound.” I told her if this had been done for me I may not be where I am today. If there are layers of oversight, maybe other women won’t be victim to the mistakes that can be made by human doctors. She thanked me and said she would begin doing this in her practice, and that I had educated her during our conversation.
So I guess I have one load off my mind, addressing a professional and calling her on what I felt was a medical “slip up”. I know that for me it is too late, but I can only hope this might change things for her future patients. It might, just might save another woman from letting a breast cancer go undetected, and to receive early detection. Part of fighting breast cancer is fighting for truth, for competent medical care and for change…and don’t think that YOU are immune….these things are happening everywhere all over the country…you are your own best advocate. With no cure for breast cancer, early detection and prevention are our only ammunition.
I have met a woman recently diagnosed stage 1, who, after meeting with 3 oncologists, learned that there is a test to see if you are even a candidate for chemo therapy! The other 2 doctors were just ready to blindly to put her through it, and never so much as mentioned such a test! As it turns out, she paid for the test herself ($4,000), and learned that she doesn’t get much benefit from chemo and so will not have to have it! Insurance companies need to start providing this to patients so that their health and lives are not needlessly altered by chemo therapy’s toxic effects (which by the way costs a whole lot more than just $4,000!!) ! By the way, in my case, the test was not necessary because they already knew I had the triple positive growth gene of Her2Nu+++, and in those cases chemo is required.
Another friend who is an 18 month survivor, has recently taken a job with The American Cancer Society and is advocating for cancer patients right here in Washington D.C. where health care reform is being battled! She is using her experience to help change the lives of others for the better and has inspired me to do the same! Thank you, Donna! You gave me just the push I needed to confront this issue that has haunted me since my diagnosis….(what could have been done differently. (?) )
Yesterday’s surgery went very well and I am glad to be home! The morning started at 3:30 a.m. as we had a 5 a.m. arrival time in surgery. Of course, as the saying goes, “hurry up and WAIT!” Tim and I sat in a waiting room for nearly 2 hours before they brought me up to anesthesia. A wonderful doctor who understood my concerns for starting an IV in my chemo-wrecked veins, did a great job using a child-sized IV. She said the drugs they use could have damaged my port so she couldn’t use that, but she did numb my hand first so it wasn’t so bad. She was also very compassionate about me not wanting to remove my scarf and provided me with a double surgical cap to wear instead. I know I shouldn’t have cared that I be in surgery with my head uncovered, but I did, and she didn’t make me feel silly at all.
I was given a sedative, then a nerve block in my back so that they wouldn’t have to use as much general anesthesia, making recovery a lot easier. I drifted off into la-la land and woke up in recovery 2 hours later. I stayed there for 2 hours and then went to a private room for the rest of the day. The most pain I had while in the hospital was a headache and back pain from the injection of the block. The pain in my chest didn’t start until I went home, but I am taking a strong pain narcotic for that. The nurses expected that I would stay overnight, but Tim and I were ready to leave and get home and get some sleep. When we got home we were greeted by all of these beautiful flower / rose bouquets! Thank you, thank you, thank you!
One of my nurses was Stella, a Nigerian woman, had also been my nurse last October after surgery. She is a beautiful woman with very, very short hair and a gleaming smile. When I told her that she had been my nurse before, and that I thought she was such an angel, and that the months following that experience were really tough (going through chemo and losing my hair), I said to her “I have a little more hair than you now, see?”, and I pulled back my scarf. She then told me that one year ago her husband died, and that in her African culture a widow is to shave her head while in mourning for one year, and so she did. I was speechless. Here I have been mourning the loss of my hair for all these months and yet this woman has suffered a far greater loss than I have, yet she willingly shaved hers all off! She was still so beautiful to me because of her spirit.
Tears started to fill my eyes as we talked and she reminded me that God is good and has carried us both through some very rough times. In her Muslim homeland she has many friends who have told her she must denounce her Western Christian beliefs, yet she refuses. She told me that she will never, ever turn away from the Jesus who has saved her soul and has conquered death. It is her hope and her faith that have seen her through this terrible time in her life and she knows she will one day see her husband again because of this hope! Meeting Stella was one of God’s ways to show me that short hair is a badge of courage, and doesn’t have to be something to despise. I can only hope that my face and spirit will shine like her’s as I forge on through this fight!
Well, it has been 8 months since my surgery in October, and next week I will be going in for my reconstruction surgery. Tuesday, July 14th, I will be admitted to Walter Reed and should actually come home later that night. I have had an uncomfortable tissue expander buried beneath my chest wall muscle all these months, and now that my chemo treatments are finished and I am not as prone to infection, it is time for it to be replaced.
I spent the entire day at the hospital on Wednesday this week, first in the chemo ward for my infusion, then to meet with my surgeon and pre-op team including anesthesia. Going through the steps preparing for surgery again takes my thoughts back to last year and all of the horrible emotions I was going through then. I suppose that is why I can’t get very excited about this next step in my recovery, because it is associated with many bad, traumatic memories. I just want it to be over and sitting there in the surgeon’s office I just wished I could get up and run out of the room and never return. But this, like the last surgery, is something I must do, and hopefully the one good thing about it, in the end, is that I will be more comfortable. Expected recovery time is a couple of weeks to a few weeks. I have hesitated for months about elaborating here about what type of surgery I am having or have had (“T.M.I.” as my kids may call it! Too much information) but I think it is important that people realize just what breast cancer does to a woman and that it can have a profound affect on her body, her self-esteem, her identity, her relationship and her future. All nerves from her collar bone to her rig cage are severed when the breast tissue is removed. She will never have feeling in that skin again. These effects last a lifetime and don’t end once many years have passed. She may seem normal on the outside but psychologically she suffers a tremendous loss.
I am experiencing some tightening of the tendon that runs from my arm pit to the wrist, a result of several lymph nodes being removed last October for biopsy. I am now doing daily physical therapy exercises to hopefully loosen things up and prevent scar tissue from building. The tingling feeling in my hands and fingers is lessening, and my fingernails are looking healthier, although they are still coming away from the nail bed. After three rounds of anti-biotics the lesions on the back of my neck are healed. The side effects from my current therapy are a constant drippy nose for the entire duration of a year ( I carry Kleenex with me EVERYWHERE), and some fatigue the couple of days after treatment.
My hair is coming in s-l-o-w-l-y, more slowly than I would like. This is still by far one of the hardest aspects of this journey and one I can’t wait to put behind me. I still cannot bear the thought of going out the front door without a scarf or wig on. Even around the house I do not go all-natural since my dog doesn’t recognize me and follows me around everywhere as if I am a stranger, and to be quite honest it is a disturbing site to see yourself in the mirror that way! 1/4 inch per month seems to be the going pace of growth, so in another 6 months I may have enough to style. I am walking every day and trying to build up my heart strength and stamina. The infusion drug I am currently on causes heart damage, and I have had a 10% decrease in output function since starting therapy in December. Pray that this number will stabilize and that I can get through the next 5 months of treatments without further damage. Please click on the video link below! Enjoy!
‘Til next week..
Breast Cancer Journey 7/10/09 <—-click here
I have created the video above as a photo journal of some of what has happened over the last 8 months.