Thank you so very much for all you good wishes and thoughts as I've recuperated from surgery. Your cards, flowers, calls, care and help have made this time of transition much easier.
As you've heard, the amenities and care at Casa del Ott were outstanding and if you're able to book a room there I'm sure you'll find that you won't want your stay to end either. They have the very best staff on call twenty-four-seven and the food, for which they are well known, is delicious. Wendy and Chuck saw to it that each meal was well-balanced and tasty. A special thank you to Wendy's mom for the delectable homemade custard and apple sauce! What a treat!
My four footed friends Bella (aka Pretty Girl) and Noah (aka Big Lug) were of great comfort and amusement during my stay there, as near as I can recall through my drug-induced haze. Quite frankly, I'm not exactly sure what I did during my time at Casa del Ott other than sleep and eat. The time passed so quickly and was so pleasant. At any rate, a hearty thanks to Wendy for keeping me on my pain med schedule. Hooray for well-managed pain! It really makes life during recovery palatable.
One of the major issues during the three-day, two-night post-surgery hospital stay was getting the pain managed. During the first day-and-a-half that was not accomplished. I felt like I'd told everyone that I needed more pain meds than your average bear but, somehow, only the minimum dosage was given. It wasn't working. And when I say it wasn't working I do mean it wasn't working.
With this so freshly in my mind it is with much conviction that I say that, should you ever be in a hospital, you must have an advocate there with you at all times. Someone who will speak up on your behalf because you, the person coming out of anesthesia and recovering from surgery, are not in the best position to represent yourself... particularly if the pain meds aren't working, you're not sleeping and you end up in a sobbing heap every four hours.
Having my family there to step in and speak up for me was critical. I am so appreciative that they were able to be there with me. Once the pain was managed I was much more comfortable and became more myself... myself hopped up on prescription pain meds, but more myself.
The point of the surgery was to get rid of the cancer and indeed that was accomplished. I would like to thank my surgeon, Dr. Boughey, for her fine work and care. Having such a compassionate person and capable surgeon combined in one person is a rare and beautiful thing.
During our stay at the Methodist Hospital there were so many caring and delightful nurses who helped make our stay pleasant. One of the most memorable was a night nurse who used a flashlight to check on me in the middle of the night. How thoughtful and kind was he to be mindful of the need for sleep and to recognize how startling bright light can be in the night.
As Janis shared with you, during the surgery the lump that we could not feel for months was still, somehow, there in almost the same size as it was initially measured. There were also three sentinel nodes and eight (of eighteen) axillary nodes that contained cancer. This was a disappointment to everyone. It was not at all what we expected to find but, as Janis said in one of the last posts, we are confident that the unexpected detour we have found ourselves on will bring us back to our original destination.
For me personally, coming to terms with the reality of those pathology results was a challenge. Two weeks ago I was overwhelmed with sadness: my desire to have an out-of-the-ballpark-home run of finding no cancer at the surgery had not come to fruition. It was such a letdown to find that the cancer was still there, especially in the lymph nodes. What happened to all the work those piranhas were supposed to be doing?!
I guess if you want a job done right you need to do it yourself! Right? Or... you can trust that the work, whatever that was to be, was done. It's heady stuff for a gal who likes to believe herself in charge of her life (I have a calendar, a schedule and plans!). But what I keep running into is that it's about letting go and trusting. Oh, the trusting... what a lesson that is.
In my mind, I believed they would find no remaining cancer in the surgery thanks to the piranha power and it would mean I wouldn't have to think about it ever returning. Coming face-to-face with the possibility that I will live with the possibility that the cancer could return was difficult. In all the meetings with our doctors there has never been a 'zero chance of return' mentioned. It's about getting the lowest return rate possible, which sounds a lot like savings accounts these days.
The next week or so I was in a period of mourning not only to accept my new reality but also to acknowledge and accept that having cancer has changed my life permanently. Letting that sadness and frustration out was a part of my healing process, as overwhelming as it was. An especially heartfelt thank you to Janis and my family during that time for listening, supporting and consoling me as I worked my way through those feelings.
Going through this mourning process has not changed my positive attitude, though at the time it did feel very, very far away. My positive attitude has been instrumental in being able to deal with the diagnosis, the treatments and in facilitating the healing process. I believe that the piranhas did their good work of cleaning up the cancer. I trust that, though it may not have been as I'd envisioned, my outcome will still be what I've wanted: to be permanently cancer-free.
The removal of the eighteen axillary underarm nodes has meant a much longer recovery path and has not been without complications. As one would expect when a major route of road is removed there is some congestion and clogging (not the kind done to fiddle music). That is what I've been experiencing in my left arm since the lymph nodes were removed. The mild swelling of the arm is being managed with compression bands and daily exercises.
Another result of the surgery has been some nerve 'bruising' that occurred when the underarm nodes were taken. The surgeon moves the nerves aside to get at the nodes but in that process the nerves, which are very sensitive (as is their job), became even more sensitive. With that, the entire underside of my left arm felt like it had a severe sunburn. Fortunately, the drug I've been taking for the numbness in the fingers and feet, along with time, has improved that discomfort- so much so that on our visit to the Mayo this past Wednesday I was finally able to be fitted with a single compression sleeve to help control the swelling.
The next step for me on this journey is to begin radiation treatments and that will happen the Monday after Thanksgiving weekend. This past Tuesday we met with a Mayo-trained radiologist here in the Cities who came highly recommended. He explained the process and answered all our questions and, though he looks so young he may be someone I babysat, he will be a terrific addition to our team.
I will go in on Monday to have a body scan done so they'll know how my insides are laid out. They want to make sure that the radiation beams will miss my heart. I say that sounds terrific. We'll also then have a baseline for future reference as I've not had a body scan done yet.
On Monday I will also be tattooed. Yes, I'm getting used to that idea myself. It will be three small dots to mark where the radiation will be focused (there's a lot of higher math used in being a radiologist). I did ask if there was a choice of color for the tattoos and my radiologist, Dr. Nisi, said he's never been asked that question but he would find out. We'll see what, other than the standard dark blue which is used to 'stand out' on the body, is available.
At the appointment I will have a treatment 'pillow' made. Pillow is in quotes because I don't believe it's meant for comfort (I still will be lying on a metal table for the radiation, people) as much as it's for proper placement during the treatments. With this deadline looming I'm working to get my left arm to raise above my head so it will not get in the way of the radiation treatments.
As with every treatment there is a cost and a benefit. The benefit of having radiation is to eradicate any remaining cells that are cancerous or pre-cancerous near or at the site. This cuts the rate of recurrence at the site by thirty percent, which is pretty appealing.
The very powerful beams of radiation will be directed at the left breast and also at the lymph nodes above the left collar bone. Because the lines of radiation are straight and my body is curved, the top of my left lung will receive radiation which will cause scar tissue to form. This is the cost of reducing the recurrence rate at the site, but, being young and a non-smoker, it shouldn't pose a problem.
There's much more to tell you but, for now, I will sign off. I wish you all a very Happy Thanksgiving. I hope it is a restful day, spent with friends and loved ones enjoying the abundance of your lives. I will be giving thanks for all of you, for your support and for your love.
With much gratitude, Karen
Saturday, November 17, 2007
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3 comments:
Beautiful description of everything that is going on. I hope that the Thanksgiving holiday was wonderful! Joyce Hoelting
On Monday, Dad and I drove to Robbinsdale to be with Karen for her first radiation treatment. The roads were great and the weather perfect.
We saw Karen's eyes light up when Janis arrived to be with her as well.
Our trip back was again perfect, until we were three miles from Fargo.........and the winds were driving the snow horizontally. We made it home before the worst part of the storm. Welcome to North Dakota/winter/and driving.
We were glad to be able to be with you and we will be there on Thursday/13th and also to hear your group perform Friday and Saturday.
Take care. Love, Mom and Dad
Hovering is not lurking. When one hovers, he holds the very large blanket of love. This very large blanket covers multitudes of people who come from all areas of the country. The blanket is heavy as well as being large. The blanket must continually be moved to insure that it fully covers my beautiful daughter. This daughter is Karen Lynn Kelley. She is absolutely the best. This is a very proud parent, her father, who will give a glowing account of the journey.
A dad, a father, is a person who loves his family, especially his children. As a father, I have a very special spot for my girls, Girls represent many things that are the opposite of myself; ie, soft, sweet, tender, dainty, pretty, good smelling, energetic, smart and lovable. I have come to gain a new and beautiful understanding of daughter Karen. This new vision has opened my eyes to a side of Karen that I had failed to recognize. She has always had a smile that could light up a room and melt a glacier. This I know. What I am now realizing is that she has great strength, amazing in quanitity and endurance. How could I not have known? I watched her grow and mature and yet my eyes must have been covered. Now I am able to see much better because I have taken the time to really listen and observe.
This awesome Karen knows how to always give her best. Never anythng less that 110 per cent in all activities she undertakes. I watched her in the leading role in "The King and I" and it was amazing and beautiful....the pride and admiration was really there for me and so many others. Proof positive of ability combined with 110 per cent perfessional performance. This is the way she goes about life.
Another attribute that had come to my attention recently is Karen's unending concern for others. She will always ask friends how they are doing, what is going on in their lives and when they speak, she listens so intently and with much empathy. She always offers positive advice on situations presented to her by friends and family.
Karen has many talents. I did not know that she was such a good writer. I read the blog entries and am really impressed with her ability to put her thoughts into words. Awesome, just awesome! But this is only one area of her expertise. Karen is not the type of person to show up anyone else. In fact, she downplays her own talents. This is her style, and boy do I admire her for doing it "her way"! Karen has a certain way in dealing with people that elevates that person and brings out the very best in that person. Only positive people can illicit such responses in others.
And what about the strength of the bond between Karen and her sister, Janis. These two women contain so many skills, techniques, wisdom and respect that it is difficult to hide my pride in this pair of children. These daughters form a pair which is best describes as inseparble. When watching them solve problems or order a basket or box of vegetables, it becomes very evident that this bond is the real thing. Nothing could make a father prouder or happier than to see how successful your daughters have become. Here is that pride again, justified, I'm sure.
Friends are so important and so priceless. All Karen's friends help in so many ways. Each friend helps me move that very large blanket of love around. You know who we are showering with love.
As we move forward on this journey, we have a lot to be thankful for: THE PLAN...it is the very best and it will be successful. THE MEDICAL TEAM...all of them are the very best. THE FAMILY...John, Margaret, Karen, Janis, Kyle all on the same page, all with a single goal in mind. We can do this! Who always uses this ditty and who first coined it---I guess you know! Karen. Her strength and commitment are unwavering. I never, ever knew about this side of her. She makes others around her so much stronger. She never gives less than her best and always brings out the best in anyone around her.
The voice of the family, friends and caring others in one loud, solid voice all say "we will kick this dirty little tumor into oblivion". Having the attitude that we will not let up until we prevail is the overpowering thought process that guarantees the best outcome.
Karen, you know where I stand, and with me are many, many others who so admire you and your strength and courage. Be assured you and I, we, will prevail and succees.
With great love and admiration,
Your dad, John Kelley
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