Sunday, March 28, 2010

Farewell to Thistle Dew

So, amidst my various health issues there's been an additional saga going on regarding the house we're buying . One thing after another has delayed the purchase. But as of today we are looking at a closing date of around mid to late May (barring anymore unforeseen glitches). All this means we will have to pack up 16 years of our life here at the cottage in a matter of about six weeks. It seems an almost impossible task.

This is actually the longest I have lived anywhere. From the time I first left my parents home at 17 until I came here at the age of thirty I moved over ten times. Of course, I wasn't moving in and out of houses, just apartments or back home with the folks...and I didn't have two kids to pack up back then either so I traveled a little lighter. But clearly I'm a little rusty at the whole moving thing now after all these years of staying put. Guess you could say this stone has gotten quite mossy for lack of rolling ;)

The process of packing inevitably inspires a few trips down memory lane as you dig around the dark corners of basements, attics and closets. You can’t help but start thinking about your past, good bad or indifferent. That will be an about face for me of late since everything has been so hyper-focused either on the immediate present of illness or the uncertain future of questionable longevity. Perhaps as nerve-wracking as this moving ordeal will be it might also serve as a good thing -- a welcome change of perspective as I look backward for a little bit. It will be a chance to sort thru some of the junk, both literally and figuratively speaking.

I remember when my mother sold the home I was raised in. While I loved the gracious old house itself and I do have some fond memories growing up there, there were also quite a few recollections I would have gladly not packed up and taken with me. But even with all that, I still found myself feeling very emotional as I stood in what was my old childhood bedroom, the last one to leave the house on the closing day. I whispered goodbye aloud because it felt like the house needed to hear it as much as I needed to say it. For a long while whenever I drove by the street I couldn't look, couldn't bear to see the evidence of someone else living in my home.

My late grandmother kept the house she raised my father and his sister in till the day she died. That house was her life and her determination to stay there is actually what killed her in the end.  Although healthy well into her 80’s she was not very surefooted.  One tragic day she fell down the stairs.  Days later she died of her injuries. It was a shocking end and seemed so preventable. In fact all of us had tried to get her to give up the home, to move into some sort of assisted living arrangement or even just a single floor condo or flat. But she had packed the house from cellar to rooftop with trinkets and treasures. And then there were her cats…if you were a stray within a 50 mile radius you knew to go to Hazel’s house – at one time she had nearly a dozen cats. She just couldn’t imagine limiting the population of either felines or material objects to fit into a smaller space.

After she died, some in my family were filled with regret and remorse for not having tried to force her into leaving, myself included. But in retrospect I think her life ended as she would have wanted. The prospect of uprooting her self and her belongings might have proven worse and hastened her death more than the fall. She died in her beloved home. That is where she wanted to be after living a long and full life. That is how she wanted to die. I understand that more than ever now.

I’ve never felt quite that way about any place I’ve lived, you know, loved it so much that I would make such a significant sacrifice. But I can imagine feeling that way very easily…I’ve always been a born romantic when it comes to houses.

The house we live in now is a wonderful little place, but it never quite felt permanent…it was supposed to be a starter house though we ended up staying way longer than we originally intended. In fact we actually tried to move once before, years ago. We had a buyer at the ready but when we began hunting for a new house it quickly became apparent that even by spending more money we wouldn’t be able to find anything that we liked all that much better in our price range at the time.

After we’d returned home from what ended up being the last day out with the realtor, my husband stood in the driveway, looked at the house and said what I thought was, “Thistle dew.” It took me a few minutes to realize he’d actually said, “This’ll do,” as in this house would do instead of moving. From that day forward our little home was named Thistle Dew Cottage. It fit. All these years we’ve thought it wasn’t grand or very special, but it was fine, it was quite nice. It would do.

And now it is finally time to say farewell. Some of the very happiest times of my life have been spent in this house...both my children were born while we lived here and Michael and I started our married life together shortly before we moved in. We've surely faced our share of challenges and weathered storms here too, especially this last year. This house has contained it all, it's part of the very fabric of our memories, the background for the most important moments of our lives, good and bad. And even though we are moving up, going somewhere bigger and better it will be very hard to say goodbye. Thistle Dew Cottage turned out to be special after all, just by virtue of being our home, the place where our lives happened around us. Within these walls a family was created. I will miss this place and hold it in my heart forever.

PS:  it turns out not to have been goodbye...we are still here, apparently this'll still do :)

Thursday, March 18, 2010


I’ve been, you guessed it, researching (don’t I always) and finding out as much as I can about lymphedema. Knowledge is power. Feeling empowered takes back control to some degree and that is comforting, at least to me. Plus it ensures that one has the best chance of getting the right treatment.

So, what is lymphedema in a really brief nutshell? My limited understanding is that it’s caused by an obstruction of the lymphatic system, in my case due to removal of 2 lymph nodes as part of my breast cancer surgery. The lymphatic system moves fluid around the body that the circulatory system doesn’t. Unlike the circulatory system that has it’s own pump (the heart), the lymphatic system is more delicate and vulnerable. So lymphedema is not an excess of fluid but rather an obstacle blocking the flow, so to speak, and resulting in chronic swelling. Up to 20% of all women treated for breast cancer develop lymphedema and their risk for doing so is lifelong. There is no cure, only varying degrees of successful management of the swelling and symptoms.

At the moment my arm shows no “back up” of fluid (determined via a meter called an ImpediMed L-Dex™) which is good news, and any swelling there is so slight as to be questionable. However my trunk, specifically my reconstructed breast, my adjacent side and part of my back are all slightly swollen. Now, they have actually been swollen since the surgery and truth be told I’m not sure the area is any more swollen than it was before. Unfortunately the meter can’t be used for truncal lymphedema so there’s no measurement of fluid. But I am having new sensations there such as pain and fullness that had a sudden onset – that combined with the onset of significant pain & sensations in my arm, as well as the fact that my breast and side are still swollen long past post-op and it all equals the diagnosis of lymphedema.

The management of this consists of multi pronged approach.

First of all there is something called MLD (manual lymphatic drainage) a process whereby a specially trained physical therapist (PT) employs a massage like technique by gently sort of stretching or moving the skin in specific directions to help redirect the lymph fluid towards unaffected nodes in other areas of my body (like my opposite armpit, the groin, etc.) It’s a slow process and my sessions take over an hour. It is not unpleasant, but it’s also nothing like a regular massage – that would be too rough and could damage the lymph vessels which mostly sit sort of under the skin. I will be learning to do a version of self-MLD and will need to do it anywhere from 3X/week to daily…forever.

Besides MLD, compression devices are necessary to keep the swelling down and help encourage lymph flow by sort of passively pumping the skin as you move. These range from cumbersome and elaborate wrapping procedures using foam and bandages to simple elastic-like full length sleeves for the arm and gauntlets or gloves for the hand. For truncal lymphedema the range of compression devices can be anything from special compression bras, binders or vests to lighter compression garments akin to shapewear (think Spanx or Flexees)

Because I am at risk for fluid build-up and arm swelling due to my symptoms and the existing swelling in my trunk, it is recommended that I wear a compression sleeve and gauntlet for a few weeks and then reassess. From now on I will always have to wear it to exercise, fly on a plane or a few other selected high risk circumstances depending on the degree of swelling or lack thereof.

To be honest, after I was fitted for my sleeve/gauntlet I cried all the way home. It is uncomfortable and ugly and I hate it. It looks sort of like an ace bandage and it goes from the top of my arm all the way down to my knuckles. It is my fondest hope that I don’t have to wear it all the time forever. Some women do.

I am also going to be fitted for a compression bra and am presently experimenting with finding the right compression camisoles for hanging around in. The camisoles aren’t too bad so far but the bras don’t look promising. My PT will need to assess whether or not the camis are enough compression or if I need to wear the bra.

I am trying to keep an open (and calm) mind.

The third prong of the treatment is exercise, particularly specific movements that help sort of pump the lymphatic fluid in an alternative direction towards other nodal locations as well as increase muscle strength and range of motion. So far they have been easy enough and I don’t mind doing them, though they need to be done several times a day and it's time consuming.

At this point I have not seen any difference in the swelling, but my discomfort and pain has decreased somewhat so that’s something.

The PT sessions are only twice a week now because I just can’t go any more often what with chemo. It’s at the same hospital I had hyperbaric treatments at…a 40min drive each way. Add the 75 minute session and once again an aspect of cancer treatment has become a part time job.

I am very tired.

My body image is already a wreck between the badly scarred and misshaped reconstructed breast, not to mention the weight gain from chemo (steroids are part of the cocktail) and being totally bald…the thought that either I will possibly swell to a level of disfigurement or have to wear VERY uncomfortable and unattractive garments forever just plain breaks my heart. But since I was proactive and aware and caught this early there is still some chance that with therapy I will be able to achieve a level of control whereby I need only wear lighter compression camisoles and don the sleeve just for special activities or flare-ups of swelling…especially if I am super diligent in all my self-care and risk prevention.

There is a small degree of hope yet worth hanging on to here and trust me, I’m grabbing it with both hands and holding on for dear life.

Thanks for reading…till next time…

Thursday, March 11, 2010

hitting the wall

I have lymphedema, specifically stage 1 truncal lymphedema. I’ve been evaluated and had some physical therapy sessions with many more to come. There is no cure for lymphedema, only management of the swelling – sometimes the swelling can be reversible if caught early, but the lymphedema itself is a chronic condition that is potentially disfiguring and will require lifelong managing.

And that sucks.

Every day I cry. Every day. My depression is presently at a level similar to when I was first diagnosed with breast cancer…similar to the dark days I experienced right after my mastectomy. There are some portions of this journey I have managed to take in stride but this is not one of them at the moment.

Once my initial shock at being diagnosed with breast cancer wore off my innate desire, my goal if you will, was to do everything I could to get thru all the various components of treatment as unscathed as possible and come out on some sort of “other side” – to go back to a semblance of my former, normal life.

With the onset of lymphedema, on top of some of the other obstacles I’ve already faced, I’m realizing now that is not going to happen exactly as I hoped, it just can’t.

Cancer changes everything.

I’m not saying there won’t be a new normal. I will get past this eventually. Adaptation is the greatest gift we humans possess bar none. In fact as a woman without religion I’m often asked what it is I do have faith in and that’s it in a nutshell – our utterly miraculous ability to adapt, to transcend.

But I’m not there yet.

I was very touched by the amazing support I got from my last entry, knowing that so many of you understand where I’m coming from whether you have walked this exact road or not. There is a universal component to suffering; we’ve all had our challenges and had to work to overcome them. I thank you from the bottom of my heart for your compassion. Keep it coming, I need all that I can get.

Till next time, thanks for reading…

Tuesday, March 2, 2010

I'm having a hard time

There appears to be no light at the end of the tunnel because there is no end to the damn tunnel itself. I am having symptoms of lymphedema and will be seeing the physical therapist on Wednesday. This is devastating to me. I can’t seem to catch a break.

I’ve postponed posting about this because when things are at their worst it’s sometimes hard for me to blog or even to socialize in person. In a strange way I feel like I’m letting people down by being so negative, so defeatist. But perhaps that’s not being fair to both myself and those who care about me, which is why I’m throwing this out there.

So, there you have it – I am neither strong nor positive at the moment. I feel panicked and scared and depressed beyond belief. I don’t want anything else to deal with, I feel like lymphedema is just too much for me on top of all I have endured.

I try to remind myself that there are those in the breast cancer community that have fared far worse than I, women that would envy my situation in general. I’ve read heartbreaking blogs during my journey written by women that, like me, were hopeful they would do their time in treatment and then move on…women who sadly aren’t here anymore. I’m still here. My kids still have their mother. I still have a chance to live. That is what I try to hold on to and most of the time I can. But right now I am having a really hard time.

Thanks for reading…till next time.