Stress and Decisions

I'm two months over due for my 6 month check up. At first it was a miscalculation. My life has become... complicated. Now that I know that I am over due, I still have not made an appointment. 


I have good reason. I don't like my doctor. The alternative in this small town is even worse, that guy is... well, not suited to my personality.  With my doctor, he does all the tests, then sends me 2 hours away to the Mayo Clinic to have them redo all the tests he just did. It is traumatic, time consuming, and exhausting. 


I'm also a little scared.  My life is exceedingly stressful. Just two minutes ago, I accidentally posted a private message on this blog that was a good indicator of where my stress is coming from. Luckily I deleted it in time, because it isn's something I can really share with the world.  


Today I noticed a patch of skin that peeled off at my scalp. It is pink and burns. I've had irregular periods for the last two months. This is a sure sign of stress... but considering my health history, it could be sign of something more. I am fairly certain that it is all stress related... but what if it isn't. It is a viscous cycle that I know going to the doctor will sort out. 


I just can't do it. I deal with with the added stress of waiting for test results, procedures, and the god awful conversation that I'm sure I'll have to have with my doctor.  I wish I could tell him to be silent and just not say a word. It would make things easier. 


Most of the time I'm pretty positive, but this week has been a struggle... being Monday, i hope that it isn't a harbinger of more trials to come. 


I keep telling myself, maybe next week.


I really need to receive some massage. 

Imagine my surprise...

A lot has happened in the last couple of years. I am thankfully cancer free as of this moment and fully enjoying my massage career.

I decided to take some steps to find out whether the steps I was taking to further my business were working. I decided to use google analytics to see where traffic was coming from for my website. Imagine my surprise when I found quite a bit of traffic coming from this blog!

I have neglected this blog horribly. I gave myself plenty of reasons. I have other blogs, I have more clients, I don't work in hospice, I don't have cancer anymore.

What I do still have is a fear of death.

I know that the increase in stress in my life has amped my reaction to little things. Thinking about my parents, or the wrinkles around my eyes, or the fact that I don't have children only feeds the fire.

My experiences with hospice have given me the language to understand and explain the process. Close friends find it easy to talk to me about their dying family members, and my family shares openly their feelings about what they want after they are gone.

Yet, there is this terror inside that is at its core, primal. We live in an age of reason, and we can use all the logic we have to explain it away, but it can not take away this instinct.

Through my journey of late I've come to terms with some aspects of my personal faith, but that doesn't quell the uneasy feelings I have either.  It provides no answer to the unanswerable, and I don't think that it supposed to.

On the days that I have a good handle on this, I revel in the mysterious nature of our world. I feel that some questions are not meant to be answered. In fact, I think that the answer is really within us, but we are not able to translate it into our limited language of culture and society.  It just is, and we should accept that.

On the other days I busy myself with the daily tasks of being, healing, and moving forward.

Moving forward with my career as a massage therapist has been more than I could have ever hoped for. I hope that if you have found this blog you will not be dismayed by my current lack of posts. I have a feeling I will be back when the moment is right.  The archives are full of stories dealing with death, massage, and care-giving, please read them and share your thoughts on them.  If you are a massage therapist looking for information or advice, I am more than willing to share information. My business site is listed to the side, and I have a massage therapy blog as well.

Yuck

I don't know how many ways I can describe the awfulness of an endo-cervical cutterage without scaring readers away. It hurts. They don't give you pain killers until after. And it makes me cry from the pit of my soul.

I was under the impression that I would have a brief exam by the Gyno and then consult with the surgeon afterward. Luckily for me my doc here at home did not send the slides from my last exam, I got to have everything redone by the docs at the Mayo in Rochester. Pap, Colposcopy, and ECC... all while be observed by the hottest doctor I have ever seen.

This Gyno was good. She obviously wasn't going to be taking any risks, or wasting my time with multiple appointments. I have much more confidence in her, than my home doc. Her Eastern European accent was easy enough to understand for the most part, and I really think that she has a good head on her shoulders. It just seemed with me, she was a little distracted.

By the time she had arrived in the exam room, I had been waiting for at least a half hour with no pants on. I had to sneak out at one point with a sheet wrapped around me looking for a bathroom, and when I got back, there was still no sign of her. When she did arrive she was with a tall man in a suit and a name tag. She introduced herself and then him as Dr. Whatisname and then continued with the exam. I looked at his name tag and it said he was a maxiofacial doctor, which I understand to be an oral surgeon.

I understand that Mayo is a teaching hospital, but I didn't understand why the guy that does root canals was observing my baby canal. I also couldn't help but notice he was one of the most attractive men I've ever seen in person. Did it help with the exam, not really. Considering the Gyno was talking to him the whole time, and having him 'take a look for himself' the torturous exam took twice as long as normal. He was respectful and all that, and was lucky I guess to observe an 'unsatifactory coloposcopy', but give a girl a break here.

So, as for cancer again, I don't know, but it's not looking too great. Waiting back for word from their results. There was a missed call on my phone today from a number from Rochester, but no message. Hard to say what that means.

Here's hopin.

Next Step

I have my next appointment set up for April 6th. I am both nervous and non committal. There is only the appointments to see an OB/GYN for more poking and prodding and then the consulting with the surgeon.

I've come to understand that I'm supposed to feel used to this by now. In many ways I do. This is just another step in the process. I have done this step several times. I'm mostly expecting to not find out any information at all. Just more 'we don't know'.

I try not to get mad at the medical community. The impression that doctors know more than they do is the fault of the patient as much as the rules of society. I'm consulting them for their opinion. In the end it is always my choice towards the action.

I discussed with my parents that if they have nothing definitive to give me, I'm not going to undergo any surgery. That decision has given me some peace.

Waiting

Waiting seems to be a theme in my life right now. Maybe I should embrace this as my opportunity for enlightenment on the subject. Tracked the doctor down after his vacation and he's passing the towel over to the 'expert' at the Mayo Clinic. I have to wait to get into to see her, though. So I'm not sure when it will be that I'll get more information.

I'm going to concentrate on being in perfect health.

Vacation

The problem with doctoring in the winter in the north is that it is so freaking cold that everyone leaves in February. It is nearly impossible to get anything done quickly in February if it involves someone going on vacation.

One month later, I have finally the results from the last procedure (after my doc returned from vacation)... and they are indicative of more waiting. Good news: No sign of cancer. Annoying News: Have to travel to see specialist to determine next step since everything is not hunky dory. Even more annoying news: Have to wait for local doc to contact specialist doc and wait for the Mayo Clinic to contact me about an appointment. So, you know. That will be weeks from now.

Good thing I'm not dying. ;)

Naming this Blog

I'm having trouble with this blog as of late. I started it talking about working with Hospice because it was such a profound experience. Now it seems to be a place to talk about my horrible doctor visits and being treated for Cancer that I may or may not have.

I decided several months ago that I couldn't hold it in anymore, because it was eating me alive. I had only told a few friends, and hadn't even told my best friends that it had possibly come back. My parents, sisters, and boyfriend were the only ones that knew anything about it. So I spilled my guts, and I feel better.

I don't want to talk about it so much any more. I mean, I will definitely keep people updated, but I certainly don't want to feed the ghouls so to speak. So what do I talk about then? The people that I massage? Professionalism and HIPPA prevent me from doing that. Things that are unimportant, like the hundreds of fake band names I come up with? People seem to like my writing, from what I gather (which is sometimes difficult to do).

So, I'm just going to say what I want. Right? Yes. Right. I'm in charge here. ;)

Speaking of Updates:
I have not heard word one from Doc. It's been nearly 3 weeks. What does this mean?
According to my sister, who is a newspaper reporter, my Doc is at a conference this week. I don't know how she knows this, but small towns can be creepy sometimes.

Maybe I'll Rename this blog The Rub Down.

I'm tired of worrying

I am still waiting for the updated prognosis. However, I am tired of worrying about it. So I decided I'm not going to. I could waste my time, pre-worrying about something that I don't know the outcome of and make myself miserable, or I can enjoy each day I have. I think I'm going to vote for enjoyment.

Recluse

I haven't been good myself. I have shut myself away from the world and anything that makes me have to answer questions or have conversations.

I am not dying, but I do not want to explain. My friends and family know better, however. They know that I am struggling with two many worries in my basket. They want to know why I haven't read their blogs, or updated them on my health. What exactly do those cryptic status statements on facebook mean, anyway?

Whether you have an abnormal pap smear, or cervical cancer, or just a regular check up... Pelvic exams are not fun. Up until this last year, they rated higher than rectal exams and enemas on my list of fun things to do, but that has quickly diminished. Since June, I have had 8 pelvic invasions of the medical variety. They have varied in complexity and pain, from the merely uncomfortable to the horrendously awful. Last week I experienced the most horrible of all procedures I have had to endure. It defied any strength of character that I possessed and sent me into hiding ever since.

Since my last pap came back with severe dysplasia (that's one step before cancer, as I understand it) after I had surgery to remove all hooglie googlie cells, the docs were not happy. They did another LEEP procedure, a difficult and uncomfortable procedure involving an electrified scalpel and local anesthesia. A procedure which I was doing okay with until they removed tissue from an area that had not been numbed. The results from that biopsy was... good. It was normal, with no abnormal cells and no cancer! Whoo hoo! *shaking head no* Not so says the doc, because the other test showed abnormal, so they have to be coming from somewhere. Somewhere deeper. Where we can't see. Enter in the Endocervical Extraction. I was warned that it would be uncomfortable but comforted by the fact that it would be quick. It only takes a second to feel the pain as the doctor blindly inserts, prods, and pulls out pieces of you, with out the benefit of painkillers.

I started crying. It took all I had not to throw up. When the nurse and doctor left the room, I just sat and stared at my feet. What am I doing? What I have I done? Why do I have to go through this?

Earlier in the summer, I breezed through these procedures with hardly a thought. I was still numb I guess. In shock over it all. I felt guilty that I had not suffered. Now each visit is excruciating, filled with nothing concrete and soul wrenching pain. Now I wait. Wait for news that i don't know what do with, how to feel about, or wish for. I wish for no cancer, but that will not preclude me from further surgery if there are abnormal cells.

This is what has been keeping me up nights, and avoiding my phone during the days. Today is a good day and I grow weary of hiding myself. Perhaps it is the warmer temperatures, finally above 10 degrees, and the sunshine. Maybe it is love and concern of my friends. Maybe I'm just weary of myself.

More waiting...

I have mentioned a couple times in this blog that my mother has always advised against getting too attached to your plans. I am reminded of this advice on a constant basis lately.

In September, I underwent surgery to remove pieces of myself. Pieces of my physical body and my spiritual self. I tried to explain to my sister what it was like. The 'procedures' leading up to the surgery were worse than the surgery itself. I was awake for the procedures as they prodded around inside my cervix. My sister has two children, so I hoped that she would understand the profound connection that woman have to their reproductive abilities. My entire biological imperative; my purpose as a woman was being violated. I could feel pieces of my identity being pulled away from me bit by bit. I felt it in my very core, as if I was removing part of my soul.

I know intellectually that it had to be done. My life and my future chance at fulfilling my purpose depended on it. After the surgery, and the confidence of the surgeon left me feeling relieved. I had done the right thing for myself, my future, and I only need to take care of my health. Report for 3 month check ups for 2 years and avoid alcohol, cigarettes, and stress.

I had my first 3 month check up in December. My doctor called after the beginning of the year. I had resolved to let 2008 cast a pallor on my future. It had been a tough year, but I'm made of sterner stuff than that. Plus I had a new year in town, and it showed the shiny new gleam of promise. That gleam was tarnished after talking to my doctor about the pap results. Not only was there more dysplasia, it was severe... after less than 3 months. The doctor, surgeon, and I are still stunned.

I remind myself that this is what 3 month check ups are for. That this isn't as yet, a life or death situation. I am still crushed. I thought I it was over. I didn't know if my soul could handle another LEEP procedure. The electrified scalpel, the numbing injections, the florescent lights in my eyes, and that god awful green paint on the walls. Once again, it was awful, but I survived it. Now I just wait. Wait to see if more cancer was found within. Wait to see if my purpose is put further at risk. Wait to see the ultimate boundaries of my strength.

Taking it all in

It has been since months since I was diagnosed with cancer. I have since been tested and prodded and surgically treated. I have had one follow up visit (still awaiting results)... but it is only now that I feel like I can talk, or even think about what happened. I don't have cancer anymore, I'm not sure I even did in the first place. It happened so fast and was so unexpected that it never registered that I had a life threatening illness.

I feel strange with my brush with cancer, it doesn't seem like it happened at all. It raises all sorts of questions of the 'why' variety. If there is a God, why scare the bejubus out of me, then make it seem like it never happened? I remember a lot of fear and denial and guilt. Isn't that interesting. Guilt over not have as bad of cancer as everybody else. "Please don't call me a survivor... I just had a wart removed, that's all." That's how it felt to me.

It started me thinking about hospice patients that are given a diagnosis of 6 months or less when they didn't know they were sick in the first place. When I worked with them, they seemed calm or sometimes in daze, not exactly sure of what to make of the situation. Shock I guess you would call it. Now I have experienced it first hand... if my diagnosis had been worse, and it took me 6 months to realize what was happening to me in the first place... where would I be?

Diagnosis

It has been over a year since I've left hospice, but the affect on my life has not diminished.
*****

This summer I was diagnosed with cancer. I sat in silence and looked to my mother as the doctor said words that I knew I understood but did not make any sense. I could feel the oxygen burn in my nostrils as I inhaled. I felt the mental clicks of defense mechanisms. Stoic demeanor will surpass emotion. I stopped listening and nodded my head to make my exit that much sooner. There would be appointments. There would be MRI's, consultations, and discussions of risks and outcomes in the future, but at that moment I wanted to dissolve into oblivion.

*****

The experience of working with bodies both strong and frail have opened my eyes to miracle of life. As a species we are a grand experiment that seems on the verge of failing, yet pulls through at the very end. Our very fear of death has lead to a richness of life that can not compare to any other species, yet our lives are not complete without death. Is our fear the death itself, or the lack of knowing whether we'll be able to gloat to our friend that we did it! We got to the finish line with all goals accomplished.

I fear the darkness. I fear the silence. I fear the cold of the earth and loss of inner burning of my soul.

Another Cycle

I found out recently that two of my hospice clients that were released from hospice, had returned and subsequently passed away. I talked about these two quite often, and if not in my blog, in my mind and heart.

I saw E. for almost two years, before they decided to release her from hospice. She is the one that scared me the most. It seems funny to be scared of a 90 year old woman confined to her bed, and her own head. She didn't talk, she couldn't move herself, and she barely acknowledged your existence, but when she did, it got right to my core, right to my fears.

The fear that I would be alone dying, with no family to take care of me. I don't know if that was E.'s case, but situation always seemed to allude to that. In scary movies, you don't have to actually see the scary part to be scared. You infer things, you guess, and you imagine. A lot of the time, your imagination is a lot worse than what actually happened, and I think this could be true of many of our fears. To be well taken care of in a good nursing home, such as the one that E. lived in, is nothing to fear... but we do none the less.

The second person, D. was returned back home when her family was again able to take care of her after a family set back, and she died at home with her son there. She was also slipping into her own mind, slowly and would have soon needed much of the care that E. needed... but D. gave me hope. She was in a nursing home for several months, but she always seemed to have a smile on her face no matter where she was. I did not fear going to help her, and I was glad to hear she died at home.

I also hear that they have finally found a replacement for me 6 months after I left. I hope she is ready for what she is about to experience, I know I wasn't. I am happy for the clients to finally have the benefit of massage therapy once again at their disposal. I know that it made a huge impact on many of the clients I worked with.

I somehow feel that it is finally coming to an end, my experience with this particular hospice. I felt a little guilty leaving, when I knew that they would have trouble finding a replacement in this small community. I don't regret leaving, my business is doing very well and my stress level is much less. However, it's hard to give up touching peoples lives in such a profound way.

Good luck to the next in this cycle.

On the other side

It's been an interesting journey as of late. This switching of lanes from caregiver to bereaved.

I've understood for a long time the process of grieving and the steps it takes. The actions, emotions, and habits of the mourning process. It's been all very intellectual up until this point.

I cried for my grandma for the first time on 12/30/07, a month and a half after her death. As I let go, I realized that I was actually crying for all the people in my family that have passed in the last 2.5 years (I think we were up to 5).

Suddenly my understanding of the behavior of caregivers of hospice patients seemed so much clearer. I had not realized how much I was holding back, or how much I was relying on the problems of my clients to distract me from my own mourning.

I have heard people saying about others "She's just not been the same since so and so died" and never really knew what to think about it. I have a better understanding of it today. I realized that I have not been 'the same' since that first death in our family.

I feel that I am profoundly lucky to have had the experience of massage therapy and hospice work to guide me through this personally difficult time.

-sigh-

We Gave Her Exactly What She Wanted

I had a couple of things wrong in my last post. My grandfather died on the 21st, not the 20th, and my grandma was waiting, but not for that particular date.

She asked to have the door to her sick room left open because Daddy was going to come and get her, and he did that today. 

She died the Sunday before Thanksgiving, just like he did, with her children and grand children surrounding her. 

We held her hand, told her that we loved her, and that we were okay. She could go when she was ready. 

After she passed, my aunt hugged one of my uncles and said "We did it" and started to cry. 

Sleeping in Daddy's Room

Grandma insists on calling everyone's father, "Daddy". She refers to her late husband as "Daddy" and she tells me to ask my "Daddy" things. It's Daddy this and Daddy that and for the longest time it really annoyed me. I don't ever remember referring to my father as anything other than Dad (or Old Fart if I'm giving him a hard time) after the age of 4 or 5.

When she was admitted to hospice, she asked for the nurse Daddy had before he died. A week or so ago she asked my uncle to move her bed into the room where Daddy died. My grandfather died on November 20, 2004 just days before Thanksgiving in his office that was converted into a sick room. When she requested this my mother and I looked at each other knowingly, but kept our mouths shut. I had suspected for a long time that my grandmother missed my grandfather much more than she let on, and that she had a bit of a romantic in her that she would never reveal.

This last weekend my father and I made another trip to see her, and she had declined significantly since I last saw her. My first reaction was a familiar one that I knew I had to squelch. It was fear. This time instead of letting others take charge and move in, I used my education as a Massage Therapist bolstered myself with it. I walked over to her and placed my hand gently on her head. I broke through my fear with the one thing I was confident of at that moment. I was skilled in providing appropriate touch, and I knew how to work with people who are dying. I wasn't scared off when the light touch produced pain. I lightened my touch to her comfort level. I asked her if I she wanted me to stop and she said no. Though there was pain, the touch felt so good to her.

The drive home wasn't nearly as silent as the last. There was much less denial, and more anger from my father, and of course, fear. For the first time I can remember my father admitted is worst fear. "I am so afraid of November 20th" he said to me. "Do you think she's waiting for that day to die?" I asked him, though I had been thinking that for weeks now. "Yes, I think that is what she wants".

You hear stories of people dying on the same day, or two days after their spouse unable to go on. Only time will tell if this will be true for Grandma. I hope she gets what she wants. There is something romantic about it, and in a way life affirming. If she can determine this last day, make her last wish come true before going on to the next world, exhibit this last bit of power, it would make me so happy. We are a stubborn lot, my family, and I would hate for any of us to let the world decide for us.

Much closer to home

I had mentioned in an earlier post that my grandmother was dying and that she was admitted to hospice. This was about a year ago, and she pulled though and was doing great, until a month ago. She is back in hospice, with an even short life expectancy than before.

I went to see her on Sunday with my father and we chatted and cleaned her house for her and visited with the other relatives that were there. I gave her a back and leg massage in her chair and she really enjoyed it. I felt good about being able to do something besides just sit there and be the granddaughter amongst the hubbub of visitors.

Kneeling down by her chair, rubbing her legs, my grandmother started talking to me as an adult, something she rarely does, even though I'm 32 years old. She normally tells me to 'go ask your daddy' things, instead of asking me what I think. This day she told me that she "wasn't faking this, as some of them think" and I let her talk. I did what I always did working with hospice patients, I let it be their time and let them have what they needed.

I left feeling drained and depressed. This is much different. Providing care for your own grandmother, and not someone elses. When I worked in Hopsice there is that magic thing called "boundries" and the knowledge that your responsibilites lasted the hour a week you were in the home. With this I took home much more information that I wanted about my aunts and uncles, about my cousins, about who is being nice, and who is being mean. I just don't want to know.

I rode home with my father, an hour drive, in a pseudo silence. A silence about what we had just expierenced. He is greatful for my help with the massage and my calm demenor during the visit. There is enough arguing and crying and flitting about these days.

Lessons Learned

It's been almost a month since I've left the hospice program. 

I still scan the obituaries to see who has passed away, and whether or not I knew them. This last week one of my clients that I had been seeing for over six months finally passed away. I was surprised at first, but in the end I was glad that she is finally at rest.

A few weeks before I left, I had a new client who was recently diagnosed with terminal cancer. We bonded right away and I was able to give her her first massage ever. She was very excited about it and couldn't wait to brag to her daughters about her massages. I've heard through the rumor mill that she really misses me and the massages I gave her.  It was when I heard that she missed me that I had the first pang of loss about leaving my clients. I wanted to say, I'll see her anyway! I'll go over there on my own! But I can't do that. With all the laws and ethics and liability I can't just go over and give this woman what she needs... though in doing it, it would be giving me somthing that I need, too.  

I went into the job hoping to squash my fear of death and the unknown. That didn't happen exactly.  I learned to face towards death and not close my eyes, but the fear is still there. I learned more about love and families than I ever thought I would. I learned to tell people how you feel and to let go of material things because they aren't worth fight over in the end. I learned about the letting go, but I haven't learned how to achieve it yet, and there is still fear.

 I believe this is still progress and I hope that it will help me in my next challenge-- deal with the death of my grandmother who collapsed today and left the hospital with a prognosis of three weeks to live. 


 

Anticipation

Tomorrow is my last day of hospice. 

It will be a good day. 

The two people I see are the most recent clients, and they are great clients.  Both had never received massage before and one took a little convincing, but they both really enjoy it.

Hopefully, all will go as planned... but as I've said before... don't count on your day going as planned in Hospice, they never do.

The First Day of School

I am feeling the anxiety pains of leaving a job I helped to create. 

I knew that when I left they would have trouble replacing me because of the qualifications required for the job. It's not that I'm extra qualified in the world of massage therapy. It's more that for this region I have the papers that say I know stuff. Hospitals like papers that say you know stuff. There are a few of us over here in the sticks, but not many. And of us, there are fewer who are up for the challenge of working with the terminally ill. 

I helped start and develop the MT portion of the hospice program here and I am worried that it will suffer with my absence. Part of the reason I needed to leave was the amount of work it took to start this program and grow my private practice at the same time.  It takes constant attention outside of the actual massages I give.   I needed to be there continually educated my coworkers and clients and remind everyone what I needed to happen to make this program work. This is fine if you can dedicate all your time to this process.  I was doing this very thing for my private practice and being a constant representative for two causes can be overwhelming. 

I am worried that when they find my replacement it will be months after my last day and the momentum of what I helped start will have waned. I worry. I feel like a mother sending her child to preschool. Will it be okay alone for a while, without me to nurture it? 

I have to have faith that it will survive and grow to be a better program.  I am of course sad that it wasn't me to make it great, but I did help get the thing off the ground. 

I can't forget my other child, the business that I started and is in desparate need of my attention. There are something there that I have neglected and need attending before they go awry.  

Time to let go...