Trying to do it All and the problems with asking for help

My daughter's high school graduation will be upon us in a month.  I am trying to get the house and the garden ready and it is very, very difficult.  I have found that with each treatment it is getting harder.  I'm getting more tired.  My eyesight is causing real problems.

My daughter wants to have her party outside in the garden.  In addition, friends and family from out of state as well as people we haven't had over before will be coming.  Needless to say, I do want everything to look nice and be good.

I think back to when I was in treatment 14 years ago.  I was in treatment with a woman named Hyla.  Hyla's daughter was going to be Bat Mitzvahed while she was in treatment.  Rather than have the reception at a hall, her daughter wanted to have it at home...in the garden.  I remember feeling sorry for Hyla and thinking that her daughter was asking too much.  It was going to be a lot of work to get things around.

I now understand where both Hyla and her daughter were.   I think for my daughter and probably Hyla's as well, they were trying to keep things as normal as possible.  In the past while I would go into overdrive, doing this would be very possible and things would be great.  This is their way of trying to make themselves think that everything is fine, nothing is different and that mom will be OK. 

Only, it is different.  I don't have the stamina, strength, or ability.  For me, I am tired of my daughter having to live with cancer hanging over her for all her life.  I want her to have a really good graduation party in the manner in which she envisioned it.  I want the same for me.  Reality, however, is another thing and I find that I am doing the ever lessening expectations.  Things I wanted to have done simply aren't going to happen. 

Now, I'm hoping that it will dry out enough so that I can get mulch delivered and the deck painted (a necessity as ti really looks bad).

Dear husband and dear daughter both are in deep denial about what I am able to do, although I think it sort of shook them up today that I didn't go to church with them.  Dear husband seems to be in lala land and really doesn't understand.

I am embarassed to ask my friends for help because some of it is sooo bad and I've been so lax in taking care of things (yes, the basement is a disaster area and needs to be sorted out).  I need to make decisions about stuff and a lot of the putting away needs to be supervised by me.  I'm going to have to just stuff it....I'm happy that a friend of mine is coming this next weekend to help.  It doesn't mean, however, that I'm any less embarassed about it.  I  feel that my husband, daughter and I should be able to do it.  However, I think that their inability to acknowledge that I'm in trouble is a major problem in this.  I admit, I'm also a bit bummed that I thought I'd be done with chemo by now..instead, I'm on it for at least a couple of more months...sigh. 

Understanding where people are coming from is often the first step in being able to work on the problem.  

On a brighter note, isn't  that tulip just great?

In the Moment

Not too long ago, at the Noble Circle Retreat, a young woman who was listening to us tell our stories broke out "does it always come back?"  At 33, she was understandably worried.  In fact, that was one of her fears.  She also wanted to know if you ever got over being afraid that it would come back. 

I jumped in.  Not surprising, I knew where she was coming from.  I had been there in almost exactly the same circumstances, a young daughter, being young and facing early one's mortality.  It was, however, a slightly different group of people.  Most of us have been in or were in dire straights...more so than the average cancer survivor.

That isn't to say, however, that her fears were unfounded.  I do know what she's saying.  I can also honestly say that over time you think of it less.  It is there, but it just doesn't raise it's head as often.  Yes, every time you go in for a check up or a test, there is that moment.  My husband's cousin goes into a tail spin every time.  I don't, I think largely because I don't think it is worth worrying about.  If tests do show that it is back, I can't do much about it and fussing about it is counter productive.  We all, however, approach things in different ways.  This is just my viewpoint. 

I do think however that using a technique used in yoga and meditation is worthwhile.  When the thought or fear of cancer flits through your mind, acknowledge it and let it go.  Be in the moment. Not what happened before and not what MIGHT happen in the future.  Just breathe and be in the here and now.  

Sometimes when I think of things, it amuses me. Last weekend I had the privilege to work in the Mistyfuse booth at the International Quilt Festival in Cincinnati.  I was going to buy some UltraViolet Mistyfuse, but Iris (Ms.Mistyfuse) was out of the packages.  She said she'd send some to me.  How much did I want? Oh, 10 yards would be fine....she said that it comes in 50 yard bolts.  The thought which flitted through my mind is "50 yards? I don't think I'll live long enough!"  I giggled when I realized what I had thought.  Iris looked at me and said "What?"  "Oh, you would be mad at me if I told you."  She looked at me sternly and said "I'm sending you 300 yards, then."  Iris knew what I thought....and I think it's pretty funny. 

Remember...breathe in, breathe out...and just enjoy the now.

Medicinal Qi Gong Lift Qi Up, Pour Qi down method

Vivien asked me about the Qi Gong which we did at the Noble Circle Project.  Qi Gong is an ancient Chinese tradition which used for curative powers as well as prevention.  It is based on the breathing and motion I think called Prana.  Go to the Wikipedia entry for it here...it explains it better than I ever could.

The one we learned at Noble Circle is a form called "Lift Qi Up, Pour Qi down."  I found a video on you-tube which shows it better than I could ever do it! Notice, what he does in 3 minutes (approximately) takes me 20 minutes to do...and I'm very clunky at it...one of these days I'll get as fluid in motion as he does.

I'm sorry to say that the embed codes are being stinky...so here's the link.



Trust me..me doing it would send you into hysterics.

Lymphedema

I'm really disgruntled today.  Last week Thursday, at the Noble Circle meeting, I looked at my hand in horror.  My left hand, the one which had the axillary dissection and radiation 17 years ago, was swollen.  After all this time, I now had lymphedema.  SNARL.

Lymphedema is a condition which breast cancer patients who have had axillary dissections and others who have had either injuries, surgeries or other complications which disrupt the lymphatic system are prone to.  The lymphatic fluids are not able to disperse in a normal way because of the damage done to their passage ways. Instead, these lymphatic fluids pool.  The affected area swells and without treatment can become large, painful, hot and hard.

In order to prevent lymphedema, you need to make sure that you don't have blood pressure taken on the affected side, nor anything which can pierce the skin.  Carrying heavy loads can bring it on, or an infection can trigger it (which is what happened to me...the side effect of the chemotherapy led to some problems with my fingers which led to an infection under the nails...and I went off the antibiotic because it (along with the chemo) was upsetting my GI tract. My sister got it when walking her dog about three years post surgery.  Her golden retriever pulled sharply and from then on, she's had a light case of lymphedema.

Lymphedema can be controlled with therapy and wearing compression gloves/sleeves.  Severe cases call for pumps and other therapies.  However, the problem is that among many doctor's there's just not a whole lot of interest or understanding.  In addition, many therapists who have gone through training don't bother to become certified or list their affiliations.

My sister cautioned me that some therapists could merely have taken one class and that I needed to find someone who really knew and understand the issues of a lymphedema patient.  A couple of years ago, I met a woman when I went to get a P.E.T. scan.  She had a horrible case of lymphedema.  Her arm was grotesquely swollen, hot, hard and painful.  The only thing it was lacking is the discoloration which often comes with advanced cases.

I had mentioned the lymphedema to my oncology nurse on March 25th.  She seemed unconcerned and when I asked her what should be done, she said "Well, I suppose we could send you to lymphedema school."  Not good enough.

So, I made an appointment with my general practitioner's office and went in on Monday.  My GP wasn't in, so I saw another person from the practice.  He proceeded to tell me that my fingers, for which I had gone in before, were a side effect of the chemo.  I said, "Yes, it is.  But the infection is only related to the chemo because of my supressed immunity. The de-lamination (for lack of a better word) of my fingernail from the nail bed allowed for moisture to get in and it to get infected.  The infection has now caused this problem."  He said that usually, the therapists who do lymphedema work are occupational therapists.  I asked if he would check the National Lymphedema Network to see who is locally certified.  The closest person was in Lima, Ohio, an hour's drive north of my home.

I wasn't thrilled.  I'm tired and the concept of having to go an hour each way just wasn't my idea of a fun time.  I called and the therapist nicely emailed me with a list of other people who had gone through training at her school and specialized in lymphedema.  The closest one wasn't practicing anymore.  The others, save one, were 47 miles away and didn't seem to have the credentials that this woman had.

So I went.  She was pleased that it wasn't severe and it was restricted to my hand rather than all the way up my arm.  She fitted me with a compression glove and taught me how to massage the lymphatic fluids away.  She told me that I didn't need to see her again unless I had questions or needed more treatment and to keep an eye on it. I also have her email address so I can reach her that was as well if I have any problems.

Today, a week after I visited the woman in Lima, I got a call from a facility a half an hour away.  It seems that the oncology nurse had made a note of it and someone had finally read it and made a referral.  I know, however, that waiting isn't a good thing and I'm still glad I took the drive.  It shouldn't be so hard to get treatment for something which is a common problem.  It shouldn't be that we have to struggle to get what we deserve.  I am also grateful that my doctors in Connecticut and the American Cancer Society in Connecticut had warned me about this so I knew what to do and how to proceed.  I'm grateful for my sister to have given me some other links.

I'm angry that if I didn't know what to do, I might not have proceeded and perhaps would be in worse shape.  I'm angry that my fellow breast cancer survivors have to be so proactive and know so much more on our own.  Somehow, it just doesn't seem right.

Do check it out. Learn the warning signs.  Keep vigilant.  It can creep out and get you any time.

Giving Back: The Noble Circle

Sycammore tree at Hope Spring's Retreat center,

In the last post, I suggested that a way to continue to fight cancer (and also to perhaps help avoid or dissipate depression) is to do something active, to get involved or help others after you have completed treatment.

In 2002, Anne Burns opened the Noble Circle retreat at  the Heartwood Retreat in California.  Shortly later, 8 Dayton, Ohio area women joined together and brought the Noble Circle Projects here.  Their focus was to bring complementary healing techniques, particularly nutrition (or gentle eating) and exercise (using the Chinese healing art of Qi Gong (pronounced "chee gong"), as well as other techniques.  Many of the original women had practiced these elements in their own lives and they found them useful.

I had heard about the Noble Circle project Dayton from my husband's cousin Maggie who did Qi Gong with one of the founders, Jan Lively.  In addition, every year the Dayton Daily News ran articles about it right around the time they have their fundraiser called "The Aware Affair."   I didn't really know the details.  I didn't really understand how it worked.  I also had no clue that there was a waiting list to get in on their retreats.

When I found that I had a cancer recurrence last year, I sent emails and asked about the retreats.  I admit, I was in a panic.  I told them about myself and found out that I couldn't get in, but that I would be put on the list.  Each retreat they accept 15 women....in the Fall, I didn't get in either.

This spring, I got word that they had had a cancellation and that I was "in."  I admit, I'm very strong on the nutrition part and try to practice that with the family (I admit, I have a sweet tooth and sometimes succomb to that), I was frantic to start Qi Gong.  I had participated in a couple of classes of walking Qi Gong in Connecticut, but no one really offered classes on a regular basis or in a location/time which was good for me.  In addition, my high school friend Janean Crapo runs a dojo in Battle Creek, Michigan and teaches Qi Gong and she's been after me for years to start practicing.

Still, you don't know what to expect.  I must say, it was an absolute pleasure.  While there, we were treated to wonderful vegetarian or almost vegetarian foods, Reiki, reflexology, and massage.  The three days were PACKED with information, activities, and Qi Gong.  I think they managed to put what normal people would do in a week into three days.

One thing which was very neat is that we were all women who were facing cancer....many of us were Stage IV, some of us were currently in treatment, others were completing treatment, some were out for a while.  We have breast cancer, ovarian, pancreatic, melanoma, cervical, and neuro-endocrine cancers represented from either the participants, the past-participant volunteers and some of the practicioners who volunteered their time.  Having more than just breast cancer was a good thing, although I have to admit, more of us had breast cancer than any of the other types.

We will continue meeting on a weekly basis for 10 weeks, then once a month thereafter.  These are all remarkable women and I am honored and blessed to have been with them.  As Robyn (aka Breast Cancer Diva) said, there's a reason we were all put together at this particular retreat.  I think she's right.

Now, if only I can get the Qi Gong down...and integrated into my life....only a half an hour...but so far I've been interrupted by hail storms, children, and other things...maybe just forming my intent and visualizing it will work. .... :)   It is my hope that the Noble Circle Project will spread even further an you all will have opportunities to participate either as volunteers, practitioners, or as one of the participants in the program.

Help

On Tuesday, when I went to my oncologist, I overheard the lady across from me bemoaning that she couldn't work in her garden.  She got out of breath and had to stop.  "I'm so out of shape!" she moaned.  I had to butt in (no surprise there) and explain that no, she wasn't necessarily out of shape, but that since her red blood cell count, hematocrit  and hemoglobin were probably down, her body just wasn't getting as much oxygen as normal.  She was on the same number of treatments I am and I feel like I should be on oxygen with all the huffing and puffing I do when I have to go up and down stairs more than once.  Bending over and cutting down grasses in the garden is very hard.

She was an avid gardener, as am I.  I have to really put it in gear as my daughter's graduation party is supposed to be in my garden at the end of May and I have house things to do as well...but that's not the point.

I've written in the past about the wonderful programs that are available to help cancer patients.  One of them is a  house cleaning service called "Cleaning for a Reason."  Professional maid services donate one house cleaning per month for four months.  A limited number of people are accepted and quite frankly, they need more cleaning services to become involved.  The American Cancer Society's Look Good Feel Better program is another wonderful service.

As I have mentioned before, people who live in rural areas or ones farther away from a large city often do not have anyone participating near them.  They lose out.  Even with me, I live in  a town of about 25,000 people, only 26 miles from Dayton which has a population of  141,000.  Only areas south of Dayton have this available to them and they don't travel as far as Troy.


This brings me to another point...quite often (more often than not) people who have finished treatment suffer from depression, sometimes slight, sometimes more severe.  They are no longer fighting cancer so they feel like they are sitting ducks.

I would suggest this.  No matter how small your town is, see if you can't enlist people to help cancer patients.  Contact the American Cancer Society and find out what is necessarily to get your local cosmetologist to participate in the "Look Good, Feel Better" program.  If there are cleaning services nearby, suggest that they participate in Cleaning for a Reason.  They may not know about it and be more than happy to participate.

Sometimes, helping out and fighting cancer in other ways may make you feel better too.  I plan on contact local garden clubs and also volunteer to help people who have cancer and are concerned about their gardens.

New Breast Cancer Study for African American Women: Please Share!

I just got  a notice from the Army of Women.  A couple of studies for African American Women studying breast cancer is not filling well.  Please spread the word and work to fill the study so that we can learn more about their experiences.

http://www.pitchengine.com/pitch/129250/