The Odyssey

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

Back home

On Friday evening we moved Karen from the lovely comforts at Casa Del Ott to her own home. Wendy and Chuck sent her off with a fabulous meal (featuring Chuck's amazing grilling skills) as well as with the tasty leftovers to feed her through the weekend.

Karen slept very well that first night back in her own bed and come morning was surprised to find that she was almost horizontal in the bed (instead of propped to a 45-degree angle as she had been since the hospital). She spent most of the day Saturday unpacking, doing physical therapy, collecting voicemail messages and mail. Dinner was shared with her friends Amy, Tom and Miss Anna who came to visit. Oh, and Karen asked me to cut off the rest of her hair. Strangely, ever since the surgery it has been falling out. I personally think it is from the anesthesia because in the four weeks prior to the surgery without chemo, she has tiny hair stubble regrowing on her head. Regardless the reason for the loss now, she grew tired of picking hair out of her hats and so we trimmed her up. She has a very lovely cranium. You might have to take my word for it, but she does.

Sunday was a day for returning a few of the many phone calls, more physical therapy, napping. Her friend Karen dropped off three delicious homemade soups and Lisa Roettger brought over a wonderful lasagna dinner.

Monday, Karen has a visit planned with Sara and Marcus and then choir rehearsal that evening. She was able to attend rehearsal last week and received a warm reception as well as a little playful chiding. Karen told me that one of the members joked, 'I can't believe you're here so soon after surgery! Now if I want to miss rehearsal because I have a sore throat or something I'll be asking myself 'Are you one week post-surgical? No? Well then, you're healthy enough to go!''

Hopefully there will be visits with Renee and Lori this week too. Karen is not yet allowed to drive, so if you have time during the day, please drop word and perhaps we can arrange for you to meet Karen for a short walk or a coffee so she isn't stuck inside all week!

Karen has asked me to thank everyone again for their kind support and concern. The cards, flowers, food, calls and emails as well as those sending their prayers and positive energy. She would like to contact you all to express her thanks personally, but just hasn't the energy at present. Please know that she will be in touch and post a message here as soon as she is able.

Only good things -
Janis

On the mend...

It's been a good many days since I last posted and I know many of you have wondered how Karen is doing.

Karen has been recuperating well under the watchful eyes and tender care of Wendy and Chuck. Their poodles, Bella and Noah, make sure that Karen has lots of attention and ears to scratch too. She has also had numerous voicemail messages, cards, email messages and blog posts to let her know she is loved and supported during this time.

Karen is slowly beginning to feel more like herself. Never having had a surgery like that, we didn't really know what to expect and were surprised by how taxed the body is and all the energy it takes to heal. And while the pain meds were necessary, their down side was that they are also heavy depressants. So, for a few days there Karen would cycle between being a bit loopy, tearful or overwhelmed and then knocked flat for a solid sleep. It's helped a great deal that she has been able to nearly weened herself off them.

We had a post-surgery visit to Mayo this past Tuesday at which time Karen had the drain removed from under her arm where the lymph nodes had been. We also met with the lymphadema clinic for instruction on how to check for signs of swelling, to perform physical therapy at home and to be fit for a compression sleeve and bra. Lucia, the physical therapist, sewed for Karen, right on the spot, a custom bra insert of her own design that discourages lymphadema - and it works! She also showed us several exercises to restore the strength and range of motion in the left shoulder. This is slow process and, at times, very frustrating. Karen has said that it seems that it should not be so difficult to do something so easy nor should it be so tiring to do so little. But she's keeping at it. Each day it will get a little easier and a little better. She's been taking walks outside every day and today walked for 25 minutes on the treadmill.

Lastly, we also met with Dr. P, the oncologist. She is not comfortable returning to the remaining Taxol treatments as was the plan because Karen's neuropathy is still fairly significant. She is running a couple tests to help determine the course to follow from here and prescribed a drug to help with the nerve pain. Not only is it in her hands and feet now, but as the nerves that come from the spine, under the arm and down the arm repair themselves they create an extreme sensitivity to touch and a pin-prick sensation that has been a new type of pain to navigate.

Karen said to me yesterday that she wants to try and begin to return calls to people who have kindly checked in on her these past couple weeks. Until a few days ago, she really didn't have much energy to do much beyond the basics. But just as with her body, her energy is recovering too.

I want to thank you to all of you for your quiet support and prayers, your calls and cards, as well as your offers to help. Your kindness really helped make the walk down this unknown road easier. As Karen gets back up to speed we may take you up on those offers in the coming weeks.

Wishing good things for you all -
Janis

On the bye, out of curiousity I just checked and there are now 45 people who subscribe to the blog! I'm certain there are just as many folks who just stop by to read it on their own. The blanket of love and support you all create is enormous, warm and comforting. Thank you!