Sunday, April 19, 2015

bringing the shine back

(This blog post is based on a writing assignment from an online writing course I am taking...otherwise I wouldn't go over all this again.)





What feelings have I felt since being diagnosed with cancer? I remember the day so vividly, though sometimes I wish it wasn’t so vivid. I kept getting a phone call throughout the day from a number I didn’t recognize so I ignored it. After school  Paul and I were going to have a photo matted and that same number called for the fourth time so I decided to answer it. It was the oncologist and he asked me if it was a good time to talk. I was driving down the interstate at 70 mph but I assumed it would be a quick call and I told him it was fine. Because even though he was calling about a biopsy I had a week earlier, I knew (felt, assumed, guessed, deduced, predicted) that the biopsy would be negative and the endometriosis he found would not be a big deal to resolve. Of course, we all know by now, I was wrong and he told me it was cancer, a very serious cancer involving surgery and chemotherapy. He apologized for having to give me this news over the phone but he wanted to schedule the surgery quickly and didn’t have time for me to make an appointment to talk in person. But said I could call anytime to discuss my questions. I thanked him and hung up. A few minutes later I called him back to ask him what kind of cancer I had…I thought it important to have that information.

What I felt first is what most people feel and that is disbelief. No, this can’t be happening to me. I have spent some time caring for my sister when she had breast cancer, for my mother, who at that time was dying from ovarian cancer and for my father through a myriad of diseases and conditions. The similarity between my cancer and my mother’s was uncanny, I just couldn’t believe it would happen to me at all, the caretaker, much less now when my mother was preparing for her life to end from cancer. I had a hysterectomy the year before to remove parts that might become cancerous later on in life due to family history.  So much for that strategy! 

After disbelief came the usual emotional devastation when you realize it is real and you have to believe it. I felt great sadness, anger and disappointment. I felt I wanted to not treat it at all and go ahead and give up on life. I didn't feel like I could go through it all. I felt weak and helpless. There were tears and gnashing of teeth. Then there was numbness. I think you have to go into the numb stage to protect your brain and heart from overload.  

The next few months were a mixture of sadness, self-pity and numbness.  My mother died a few days after my first chemo treatment. I felt grief that she was gone and relief that she was spared more suffering. There was so much going on physically that I feel like I never had time to adequately process what was happening to me emotionally.  But finally some emotions I did not expect showed up…and they were fear and anxiety. Yes I know its normal to feel these when going through surgery and chemo but the extent to which I felt them surprised me. I became afraid and nervous about EVERYTHING, even the things that were not cancer related. If Paul went out I knew he would have a car accident and never return.  If I heard a noise at night it was someone breaking in to kill us in our sleep. I began reading the news and saw how scary our world is. I started studying food choices and realized we are probably all getting poisoned slowly but surely.  Any ache or pain or twinge meant the cancer was growing. Any abnormality in my body meant I was getting an infection again. I realized that once you know you are not invincible then anything bad can happen…and probably would.  I hated being afraid of everything. 

Now that there some is distance from that day my feelings are less erratic and often mixed with happy emotions. My sense of humour has improved and I can make jokes, though my family may wish I still didn’t.  I plan for the future now and buy new things, which I stopped doing for awhile because I was sure I was going to die at any moment. I feel grateful. People really are good and have done so much to help that I feel great appreciation.  I feel more compassion for those going through hard times.  I am not sure whether it is time that has helped or if I’m really learning something. I still feel fear. I still feel sorry for myself sometimes. I still get angry at times that this is happening to me. All normal I think. But most of all I know I am responsible for my reactions to all the emotions I feel.  And so we move on from this day of discovery to whatever is next.

Thursday, March 26, 2015

back on track



After a month break from chemo because of the blood clot and colon infection I am finally back on track.  I restarted chemo treatments on Tuesday. Wednesday I was high on steroids and felt like myself.  By Thursday I am starting to fade and I am starting to feel all those familiar side effects I remember from before the break.  But I need to be through ( 5 more) and start recovering and getting my life back. I am planning on returning to work for the last three weeks of school. And then spend the summer getting strength and, hopefully, lots of hair back.  

My mood has been better. I realize that is because I haven't been having treatments. Chemo is the hardest thing I have ever experienced and I expect to have some downs now that my body is being flooded with toxins again. But I think I am in a better place than I have been since all this started. Maybe I'm learning something...maybe...

Thanks for following this journey with me!

Tuesday, March 10, 2015

cautious


                                

Since this illness began I have been very cautious...about EVERYTHING!  I know now that bad things can happen even when you are expecting good.  So to avoid disappointment I tend to think the worst or nothing at all and if it turns out to be good news then I can be pleasantly surprised.

This week I received good news.  I went back to the diagnostic center to have a PET scan which would tell if there was any cancer on my kidney where 'something' was spotted on the CT scan I had before the blood clot crisis.  Later the same day I went to my doctor's office to get the results. I waited and waited while getting more nervous as time passed. There were still many in front of me and my impatience was growing.  Then the good things started happening. My doctor called me back ahead of other patients to a little room where the nurses take your blood pressure and weigh you.  He said he didn't want me to have to wait to hear the news he had for me. I began to cry thinking it was another crisis.  He quickly reassured me that he had good news. The 'something' on the kidney was just a hematoma from the original surgery last August.  In fact, there was NO CANCER anywhere. The chemo treatments I have had so far are working.  Also, the PET scan showed the blood clot in my lungs had already dissipated quite a bit.  Relief spread over me and the anxiety of the day disappeared. What a good feeling!  I really appreciate the doctor doing that. He says he can feel all the anguish of the waiting patients so he wanted to relieve my anguish since I had been having a rough time with the clot and the infection.  Very kind of him. 

Of course things are not perfect. I still have to finish chemo (six more treatments), I can't start chemo again until the GI infection is gone and today I am having a blood transfusion.  But there is an upward trend...yes I am still cautious and probably will be for quite awhile but trying to enjoy the good news for a change and let go of some of my constant worrying.  

And so the journey continues...


Sunday, March 1, 2015

post scan musings



We came home in the snow. A soft, gentle hush of silence descending around us. If only I could achieve that same quiet peace.

I had a CT scan on Monday and had pretty much convinced myself that everything would be fine. The weekend had been a bit rough. I was weak and out of breath, which I assumed were side effects of the most recent chemo.  After the scan I returned to the oncologists office to wait for the results. Which weren't pretty. He told me I had significant blood clots in my lungs. The nurse gave me three shots of blood thinner in my stomach. We were sent to the hospital. Do not pass Go; Do not collect $200.

At the hospital there were the usual tests and visits from a variety of doctors...oncology and pulmonary. Ultrasounds and echograms. Lions and tigers and bears. Oh My!  It turns out I had something called a Saddle Embolus...which as the name suggests...saddles itself in the middle and extends into both lungs. Most people die within 30-60 minutes of having this type of clot.  I was slightly out of breath when I walked. All the experts said the clot was 'impressive' (meaning large) and seemed surprised that I was walking and talking and not needing to be on life support or even oxygen. I was finally told I happen to have a large lung capacity that could accomodate this whopper of a blood clot. The treatment is the same as for a regular pulmonary embolism...I will continue blood thinners and a filter was placed in my inferior vena cava.  It is a filter that will break up any other clots that might form in my legs and try to travel to my lungs.  My heart was examined and it seems it was not under stress due to the blood clot. More good news indeed!

After determining I was stable I was sent home with syringes, etc to continue the process of thinning my blood in order for my body to adapt to the blood clot.  It snowed heavily our first night home. By the next morning it was melting quickly when I received a phone call from my doctor letting me know one of the myriad of tests showed an gastrointestinal infection that I picked up somewhere. Or rather it picked me. More medications, more complications. More delays to chemo because of the infection.

And now the questions and fear begin. Am I reallly stable?  Can part of this clot break off still and wreak havoc in my lungs? What is the mortality rate for patients with saddle clots AND cancer AND gastrointestinal infections AND open wounds AND... Ok, now I'm just feeling sorry for myself. I am grateful for my large capacity lungs, the infection was caught early, the open wounds are slowly healing and I am still surrounded by the loving support of family and friends...

Wednesday, February 18, 2015

chemo seats

These are the chairs they provide for family who come to chemo with their cancer patients. Not very comfortable but the comfort of being there for the patients is immeasurable. This last week at chemo I was the last person to finish because I had two poisons to be pumped in and the others just had one. Just my lucky week.  So I sat alone in the chemo lab...slept some, took phone pics, and then thought a lot.  Change is the end result of all true learning. (Leo Buscaglia).  I want to learn from this experience and I certainly want to change.  I think I see small changes occurring. I am more grateful for things than I was in the past. Little things mean so much. When you are facing a serious illness it has to change you, doesn't it?

There is a blood test we get every three weeks. The magic number of it is what we all wait anxiously to see.  Mine is in the normal range indicating I am in remission. But the results of the last two tests have shown a slight increase...but it is still in the normal range. Of course, I worry and obsess.  I don't like the trend.  I am waiting now for a call from the oncologist to see if he wants to do a scan to make sure the cancer isn't growing back despite the chemo treatments. Not a calming thought at all.

In between treatments life continues as it has the past few months. Reading, watching movies, knitting, walks when the weather permits, some light yoga, errands, lots of time on the internet, precious time with my husband, visits from my sister, love and encouragement from friends. There are of course some physical drawbacks from the chemo but they have not been as bad as I had imagined when all this started. I have five more to go then I will return to work with wig and/or hats and finish out the year with my students.  And this summer I will recover. This is all assuming the cancer is gone. I am going to hold on to that assumption and work toward healing....emotionally and physically.








Thursday, January 15, 2015

never look away

She never looks away from truth and beauty.
  it is a formidable struggle for her.
  too tenacious and dauntless to hide.
Truth holds reign in her heart
We are her loyal subjects.
we follow her wisdom
 which plagues her steps
delicate, tender and exposed
she holds the secrets and 
we wait for them to be revealed.

Monday, January 12, 2015

chemo days

This is a picture of some other cancer patients at the local infusion lab. I was here yesterday receiving more toxins in my bloodstream. It is interesting to meet the other cancer patients.  Sometimes I shut it all out and put a movie on the i pad or play with my phone. Other times I try to engage and I can for awhile but as they continue to go over detail after detail of their disease and treatment I tend to start feeling sick.   The chemo nurse just gave me meds so I won't feel sick. I am waiting for the blessed relief of them to kick in. Well this post was a lot longer but some technology went awry and I don't think I have the energy to recreate it. Suffice it to say, chemo days are exhausting but today I feel better.

Oh, I also thought of some blessings (see I am trying).  First the steroids I have to take make all the joints of this old body stop hurting.  Also I have never been closer to my husband or my sister. They are there for me every second of the day.  Crisis breeds intimacy....or something like that. And the support of family and friends has been astounding. What would I do without them? 

My horoscope today said I should use everything and everyone whether I think they are wise or not as a classroom. Ask questions. Use this time to learn.  I'll try.  Of course I have asked why many times but I don't think that's the right question for me.  Maybe I should just try to be an observant student and watch and see what secrets the universe holds for me and those I love. 

Sunday, January 11, 2015

small victories

I finished a knitted hat today. I know that doesn't seem like much. A veteran knitter like my daughter-in-law would have finished it in an hour. It took me almost 8 months.  And this hat is full of multiple errors and goofs. But the thing is it is seen a lot of family drama. I started this hat in May when I went to Florida to help take care of my parents. It has seen illness, it has seen death, it has seen the crumbling of lives and then watched them be rebuilt. This little cap has been through my diagnosis, surgeries and treatments. It has been through all the tragedies and crisis our family has lived through this summer and fall.  It is a symbol of the strength of our family, and the weaknesses too. I think often of what we have lost but I want to find the blessings and gifts that loss can give. I am still looking...

Update:  not a bad week after returning to chemo on Monday. Some rough days but better days too. And so we go on...

Friday, January 2, 2015

tmi (avoid reading if you don't want gory details)

A friend suggested a cancer diary to help me through this illness. I think cancer diaries have been done by hundreds of cancer patients (or thousands) and I didn't want to be that cliche. But when you have cancer it kind of becomes your life so today that's what I'm writing about. 

 

 I mentioned fear in an earlier blog post. My fear is more under control though even when I don't think I'm all that anxious my mind and body show symptoms that I am still quite fearful of the unknown. I guess that's normal. But I see other patients at the chemo lab that are so positive and happy (perky, almost). I am not that kind of person. I have wondered if I should become more like that though I don't think it would work for me. However, I do think I need to have more love,faith, hope, grace, gratitude, strength, patience, positivity, belief, etc which are all better than perkiness aren't they? I think a lot about religion and spirituality but we won't go there today. I don't want to offend any religious people. But I pray and try to believe... 


 After one month of chemo I developed a severe infection in one of my ports. I was unable to continue chemo treatments as we worked to clear this infection. I had two ports. One was the usual IV port that most have and the second was called an intraperitoneal port that delivered chemotherapy poisons directly to the peritoneal lining. But because of the infection it was removed. I was trying to be aggressive as possible against this cancer. Unfortunately I will not continue with the second port because they don't want to take a chance of another infection by putting it back in. I ended up in the hospital for more surgery (some without anesthesia because there wasn't time due to the severity of the problem) Because of all that I now have two open wounds on my stomach that must be left open until they heal. We change the dressing three times a day and watch carefully for healing or signs of returning infection. Paul is kind, generous and patient as he has the onerous job of changing the dressings and answering my daily questions about the progress of the healing. My sister visited last month and let me squeeze her hand when the process was much more painful. She, in her generous, kind way has helped us in so many ways. My friend Agnes takes me places, rubs my feet and multitude of other gifts to calm and support me. Wallace has come to sit with me for hours to help me keep my mind away from the fear. My daughter and granddaughter visit and help and bring joy to my life. I have friends who send thoughts and prayers and food and love. I am grateful for all of them.

 I, however, am not grateful for the disease. Some have suggested to be grateful for everything because of the lessons and/or blessings it can bring to your life. I'm not there yet. But next week I return to chemo and we will hope it goes smoothly. I would like to avoid any more life threatening complications. I want to work toward getting my life back. Or even a different life than I had before...just not the one I have now.

Wednesday, December 24, 2014

Mom

Friday, November 7, 2014

companions


One of my companions during this journey has been fear. I have come to know him quite well. I know his smell. Its vaguely the smell of burnt coffee mixed with a sweet perfume. I know the taste of fear. It is metal. It collects in the back of your throat, lump-style, and feels like it might choke you.  Fear pops up randomly sometimes. Other times it is when you receive news that should scare you. Fear doesn't miss the opportunity to make sure you know he is there. I have read, discussed, cried, begged, shouted and swore about how to get rid of this unpleasant companion.  The last article said I should bring light into the situation to offset the darkness of fear. The method it suggested for bringing light in was to do something to fix the problem that is causing you fear. The treatment I am going through is what I'm doing, but its pretty scary itself so it doesn't bring much light in.  But there are other forms of light. Yesterday I spent hours on the phone with a DNA consultant that is doing genetic research on my form of cancer. I was wrecked after the conversation and fear offered to come sit with me and keep me company. I let him for awhile until the rainbow man appeared and filled my house with rainbows.  And then the crocodile woman came snapping at my pain and bringing me comfort. Fear started easing toward the front door. And there are others who show up with laughter and such caring that fear begins to gag from all the love and has to take a break.  I know he'll be back but everyday I find new ways to keep him at bay. And if I can't then I rant and rave and cry and that brings some relief and fear backs away a little. I am not by nature a positive person but by the time this is over you may not even recognize me. Or at least maybe fear will be a little less likely to want to hang with me.

Saturday, October 11, 2014

everyone loves Raymond






I am home again. I went to Florida for my mother's memorial service. I spent a week there enjoying Quality time with my favorite (and only) sister. Loads of tears and laughter, sadness and grief and just being together.

My flight home was a nightmare. It is usually a one and half hour flight. This time fog prevented us from landing and we were diverted to an alternative airport and ended up spending six hours on the plane. But obviously I survived without going into a panic and screaming at anyone.

Today I was determined to write but a refrain kept playing in my head saying how much I don't want to live this life I have now. Finally, I was able to talk back to that negative voice and say this is the life I have now and I am determined to make the best of it and enjoy life as much as I can. There are things to be grateful for...

ok Denise, not profound or humorous as something you could write but.. I did write 3+ sentences  ...it is a start.

Saturday, September 27, 2014

It is what it is...

Yes my life is still topsy-turvy, surreal almost. Since this summer my father has moved into an assisted living facility. Sometimes he loves it and sometimes he is confused and frustrated. My mother will pass any time now...probably today or tomorrow. Wise Owl is away again, and we hope daily she will return with the strength and beauty that we know are inside her. And if all this wasn't enough cancer has now fallen into my lap. It is not an easy cancer, treatable but not curable and I have just started chemo treatments. I haven't been able to do what I usually do for others, like go to Florida to be with my family, to spend more time with Wise Owl, not being able to work...I am feeling useless and irrelevant. Not sure who I am. But there has been so much love extended too. My husband is amazing, my family is loving and friends have provided food and support in many different ways. So as life tends to be, it is a mixed bag. Sometimes I have dreams of running away to Bali but that being a nonsensical fantasy I will trudge on following the only path I have at the moment...


Thursday, July 10, 2014

down on mainstreet

A holga journey down Main Street:



Friday, June 13, 2014

chemo wigs and other fun

Everyone home from the hospital and we are trying to find a rhythm to our lives. We have home health assistants, hospice nurses, social workers, physical therapists, occupational therapists, etc that we must schedule and open our house to as they make their mandatory visits. Often we are tired and exhausted but every once in awhile there are moments of mercy and grace that swoop in unexpected and refreshing. We are grateful for these moments.

A family dinner recently was spent in laughter as we talked about our day and remembered funny stories from the past.  The good feelings hovered in the air around us and we felt hope...at least for a bit...at least there was that.


Tuesday, June 3, 2014

Transitions

warning: there may be extreme expressions of emotions and sentimentality that some may find offensive.  For those who are or know my family you will understand I hope.

I take Dramamine when I fly. So when I arrived I was just a bit groggy. My flight arrived on time, my bag appeared in a timely manner and good friends drove me to my mother's house to pick up her car and head for the hospital. My mother was coming home that day. I drove there with no problems, got the room number from my sister, left the car in valet parking and hurried inside. The room was missing though. I walked up and down the hall in my Dramamine fog but there was no such number. I finally went to the nurses' station and found there was no such room number in that hospital. I felt irritated and confused until it hit me...I had driven to the wrong hospital. Both my parents were in the hospital...less than a mile apart from each other, on their 61st wedding anniversary, no less. Dad was in because he had become suddenly weaker, leaving him unable to walk, even with the walker he uses to support himself. My mother, who has been battling cancer for awhile was admitted to the cancer hospital due to pain. The oncologist did not bring good news and palliative care to reduce pain and alleviate discomfort has begun.  Since I was in the same hospital as my dad I ran up to the physical rehab unit for a quick visit with him. He was greatly amused that I had driven to the wrong hospital. He seemed happy to see me though disappointed that what he thought was a bag of popcorn was actually just my purse.  My father's dementia has worsened and even more so when out of his normal routine.  Finally arriving at my mom's hospital room I was struck by how small and frail she looked. But once she smiled and I held her in a long deep embrace I felt better. The hospice nurse was there, they were discussing assisted living facilities so that my parents could be together in a home that provided my mom the help she will need to care for my dad. She has been his primary caregiver for many years. She has Herculean strength and a stubborn constitution that has served her well. But this latest cancer pain was taking its toll and she would not be able to care for him as she always has.  My sister lives with them and helps as much as she can but she must work so we have to find some solutions. The entire prospect is overwhelming and discouraging. My sister shut down after I arrived and let the fear wash over her in waves, leaving her quiet and withdrawn.  The fear and despair is almost palpable at times.  I want to be the one that brings peace and calm to the situation but what can I do?

After bringing my mother home she wanted to visit dad as it was their anniversary and insisted on taking herself.  She came home in tears, overly tired and exhausted. It had been one of his difficult days and nothing she did or said could please him.  This journey...this transition will be a perilous adventure for all of us. A friend talked to me before i left about how to handle it all without being engulfed by the emotions. She suggested I hold the space...be there but don't try to 'fix' everything. I am practicing holding the space, pausing, responding not just reacting and, most of all I am practicing breathing and trying to be in the moment.

Later my sister, my mom and I enjoyed a pleasant evening talking and laughing and just being with each other. It was a gift that I will cherish. I have always loved my family but times like these make you realize even more about each of them and yourself.  My sister is a beautiful, generous, tender-hearted soul. My mother loving, lion-hearted and brave.  Despite the difficulties ahead I love being with them.  I am grateful I have the time to be here to help if I can.

I will spend the summer here and we will see...

Tuesday, February 11, 2014

kaleidoscope

broken, smoldering, pleading yet
sometimes a flame of crimson...blazing,
bright and fierce...too hot to touch...
we cower in terror
 for she who comforts also burns

spinning in tiny circles, floating above
in a perplexed and weary refrain
the edges blur into a cacophony
of pain and despair

Grey, smoldering ashes with
tiny sparks of fire that flare and fade
into bleak and somber quiet. 

in the quiet she dreams
a muddled  kaleidoscope
of all she was and wants to be
snowmen ride on swans
and demons haunt her sleep

soft skin, gentle scent of 
something akin to life and love
rising in the night to pacify
the fretful fears of the weak and helpless.
unyielding embrace of solace hold me now

Friday, September 6, 2013

Something profound

video
Life is a constant searching for what will bring happiness to our life.  We toss and turn and flail about looking for 'the answer'.  We can't change the pattern and just float along accepting what the universe gifts us. Going with the flow is a daunting task. Humans seek and beg and even, sometimes, receive. Because that is the way we roll :)

Friday, June 28, 2013

over a year...

It is been over a year since our world fell apart during that humid and frightening summer. Many things have changed and we still struggle but let's just say it is better in many ways.  She does the things she has to but without the joy and happiness and peace I would wish for her.  I see her as always divided, pulled in many directions.  I don't think she can grow in that scenario.  And then there is me...always offering advice and counsel, wanted or not. Do I push too hard...out of fear?  The path she so tentatively travels on now seems fraught with danger and disaster.  But it is her path. And who am I to try and deter her from it.  But I have seen things ... that I feel I must save her from...

But most of all there is Tiny Owl...the wisest of us all...but still vulnerable despite her brave front. What does she need from me?  I know she needs her and to know she loves her more than any other but she doesn't feel that yet. How could she? And is she expected to pay for the sins of the past by enduring more pain?

So I have had severe flashbacks to the horrors of last summer, so has Tiny Owl. I guess it is inevitable as it has been a year and we inhabit the same spots we did before. Each one wrapped with a memory as painful as a knife slid into the heart.  I will always feel shame and regret for some of my reactions. I can only justify them by knowing I was clamoring to save her life...but does the end justify the means? Sometimes, I was gentle, understanding, accommodating while other times the emotions took over and I said and did things that I can't fix.

But there was a bittersweet memory that floated in one night  for which I am grateful.  It was just the two of us, not sure where Tiny Owl was that night. She wasn't like herself at all yet but had a sweetness that touched me deeply.  She was still rushing about trying to find refuge from the deluge inside her but her actions were different this night. We played silly board games and laughed together. She painted my nails. She stood outside the shower to make sure I wouldn't fall (Mom-om) and held me when I climbed on a stool to take a picture.  When I fell asleep she painted my toenails, paint everywhere but it didn't matter.  She was reaching out to me in the only way she could that night.  I grasp for the good as often as I can and can only hope for the future.  I search for balance in how to approach her with my fears...balance, something that doesn't come easy for me. But in my tilted, skewed way I will offer what I can...


Saturday, June 8, 2013

Monsters and other gremlins



He stared out of the car window with empty black eyes.
He thumped a beat with ashen fingernails on the glass
Though his gaze was vacant, his mind was absorbed,
studying his subject, calculating his next move.

He wondered when she would stop driving
And running and scattering herself to the wind.
If his aim was true he would defeat her by morning.
And if not then she should know he was legion,
he was not alone and there were a multitude of others
to take his place at her side. 

 He wondered why she bothered
and when she would realize his efforts could not be squelched.
He had been alive for countless years and his victories
were myriad.  And yet she continued to run from him,
believing his horrific countenance made him a monster
of the worst kind. His pallid skin covered with odd
protuberances and inflamed boils frightened many away.  

Somehow he thought she would be different,
more understanding, more accepting but no…
She too ran away instead of embracing what
he had to offer her. As he contemplated her fate
and what must come next, she drove off the road
hurtling the car into a deep ravine.

 As he climbed out of the shattered car and stumbled
 through the broken glass and twisted metal he chuckled 
 in a deep raspy voice and watched the sun slide slowly
 behind the horizon.