Freaking out

Life has been hectic.Saturday was my daughter's high school graduation and party.  We had people coming from Washington state, Montana, Connecticut, Michigan and of course, the local area. 

Iris from my garden

Trying to get the house and gardens ready was a real feat. I had help from lots of people but found that the fatigue and pain in the pelvis I had was really a bit much to try to accomplish this.  Each night when I went to bed or often even before, I had horrific pain in my pelvis.  Since I didn't have similar pain when I had the first bone mets in 1997, I was terrified that I had chemo resistant cancer.  

The good news came today, howver, that my markers dropped again.   So, the pain, which is rather nasty, is due to a re-fracture from the damaged area, pain associated with Abraxane, or pain from the 2009 fracture from all the lifting, pounding, digging, etc.  I've been doing. 

I was really frightened.  How was I going to be able to continue to live in a 2 story house?  Does this mean that the rest of my life, however long that may be, I would continue to have pain?
Sometimes the Tramadol worked, sometimes it didn't. 

In the meantime, I am going to  hire someone to help me spread mulch, the only way I'll be able to keep on top of my garden this summer.  One of my neighbors told me that I would have to cut back.  I've been thinking that and I've been giving away plants, but there is a limit to some of the areas that I am willing to cut out.  I don't want to loose a lot of the shrubs I have and while I can, and am, reducing the size of some of the beds, others I don't want to.  Mulching and using Preen, a synthetic corn gluten which inhibits seeds from sprouting helps.  The areas in my garden where I used it last year and mulched were far easier to get into shape this spring. 

And...of course, I hope I don't have to do this next year.  In the meantime, I'm going to concentrate on the falling markers...........

The Moon Face

 Two weeks ago, I had a revelation....No matter what you KNOW about side effects...sometimes you're slapped up-beside the head with them. 

Since starting chemotherapy in November, I have lost 10 pounds.  This photo was taken of me right after having my first treatment.  I got the chemo on Friday and this was taken on Saturday morning.

This photo was taken April 30....now mind you, I've lost 10 pounds.  What you're seeing is the result of Decadron, the steroid I get to alleviate some of the side effects of chemo.

Yuck.  Maybe if I stuck a pin in myself???? Oh...wait...they stick needles in me weekly.  :) 

Anger

A couple of weeks ago at the Noble Circle project, we were talking about anger and the diagnosis of breast cancer.  It was interesting, several of the participants had reacted to the original (and in my case repeated) diagnosis of cancer without anger.  Instead, we saw it as having a job to do and we needed to get to work.

I can say that I have been angry during my treatment several times.  I was angry with Dr. Bernie Siegal when I read Love, Medicine and Miracles.   In it, he commented that those who got angry with their disease were ones who tended to survive longer.  I had a hard time with this as I wasn't angry. I felt that I was sideswiped by evil, but that there wasn't anything I could do about what was in the past, I just had something I needed to work on at that moment.  I felt that by saying that those who got angry survived , by the opposite, those who didn't died.  I had to take a deep breath with this one.

Bernie was one of my friend's neighbors and I told her to tell him the next time he was jogging by to say I was angry, but that I was angry at him for having written such a thing. 

Anger is a funny thing.  In general, it is considered a negative....and "bad."  However, I think that that is a disservice to human-kind.  Anger is a normal, human feeling and to label it as bad is denying ourselves our humanity.   However, it is what we do with our anger which is the trick.   If we direct it towards others in a raw, destructive manner, yes it is bad.  If we stuff it and allow it to eat at us rather than looking at the causes of our anger and trying to face it and find a solution and an appropriate outlet or diffusion, than that isn't good either. 

Anger can be a motivating factor and if approached rationally it can open dialogue and clear the air.  However, I think far too often we don't approach it in the right way and we lash out...

I have to admit, I have been angry with my family's inability to help me or acknowledge that I have cancer and am unable to do what I normally do because their own fear.  In the past with my husband, I directed this anger inward by eating too much or stuff I shouldn't have....self-destruction is always a bad idea!  But, I do think that if we step away and cool down, analyze it then talk rationally with the source of our anger, if we can, we can go far to finding solutions.

This isn't to say that I feel bad that my daughter doesn't remember a healthy mom.  I do sometimes envy those who are living "normal" lives and haven't had to repeatedly face the financial and other burdens that having had cancer causes.  But then, I look at the many beautiful children who have not been able to live as long as I have and all the young soldiers who have lost their lives or who are suffering from PTSD, or loss of limb and functionality whether it be mental or whatever and I feel fortunate that I am where I am.

Polyanna? Perhaps.  I've always been that way...but I don't think we need anything else to beat ourselves up over....I do think that we need to work hard on trying to have the mental and physical stamina we need to live our lives as best we can...and that includes accepting that we are human  and we get mad...at our disease, our doctors and the many injustices in the world..  So..lets go out and see what we can do to rectify some of these things...correct what we can and let go of what we can't.  Seems to me that that's a pretty good way to live our lives however long or short that might be.

The photos is a honey locust tree (Gleditsia triacanthos) growing at Mt. St. Johns, the Marianist Environmental Education Center in Dayton, Ohio.  The thorns were sometimes used as nails.  The "honey" comes from the sweet pulp that is in the seed pods.  The Native Americans used to use it as a food source.  

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.