Wednesday, September 2, 2015

Peace...one moment at a time




Just a quick and happy update... My three month check-up went well. Cancer has not returned and I can continue, for now, striving to heal and get my life in a perfect, organized blissful state! Hoo-hah!

Actually a friend suggested imagining a celebration of Me! What would that entail? I tend to be shy and reticent...don't like to trouble anyone but if I could I would throw a huge party that would reflect my feelings of happiness and relief when I received this news. Life can be short and often times complicated so moments of peace should be celebrated. I dreamed of my house being in order...the hardwood floors shiny and polished, the dust released from captivity, everything in its place with the sun shining in the spotless windows. And since I am dreaming I would have someone else do all the cleaning!  I saw my friends and family gathering in the sparkling living room on the couch and chairs and others on the porch sipping sangria and snacking on elegant party food. I would serve plump dates stuffed with pecans and then wrapped in bacon and heated to crunchy juiciness. And fruits and hummus and delicious cheeses and rich dips with breads and crackers. And certainly something with shrimp!  The hum of laughter and chatter would fill the air. I would move from group to group sharing some of each topic before moving on. Making sure the plates and glasses stayed full...listening to old rock songs from my past that still bring nostalgia and lightness to the mood. A DVD of Wallace's photos would be available on the television for everyone to see what a brilliant photographer he is. The walls covered with lovely photographs my husband had taken. My sister quoting the Jabberwocky, Agnes dancing with Sarah and Sam making everyone laugh with the sarcastic humour we have all come to love and enjoy. Dan and family would make the trip to join in the merriment.  I, of course, would be taking photos of all my loved ones as we enjoy each other. No talk of daily life or drudgery, only light conversation or deep discussions on the meaning of life! And then chocolate cake or yogurt and figs or some decadent pastry that brings oohs and ahhs as we sink our teeth into sweet treats. For those that can stay late we will refill our glasses and cuddle together in the living room to watch a movie. Munching on leftover food and watching something fun like "O, Brother" or something more melancholy and thought-provoking like, "The Hours".   Then maybe just a few of those I am closest to would stay on talking and sharing the joy right into the night and early morning. Trials and tribulations may return...I expect they will... but for one night it would be good to celebrate Me and life and love!

(For Pam G.) - Its always a good feeling to finish your homework. 

Monday, August 24, 2015

And we move on...

photo taken by Paul Boocock


I will be the first to admit it has been a rough summer. Not whining, just fact! Recovering from chemo, the brain bleed and the seizure has been an uphill battle. Fatigue, lots of headaches and little sleep. Also, my magnesium levels have been low so I was going every week to have an IV infusion of magnesium to try and boost my energy. And, finally, because I am not on steroids anymore arthritis pain has increased making movement difficult. Painting a lovely picture of my life, aren't I? But I say all that to say this...I think I have begun to make a positive turn in my recovery...or at least a curve if not a full turn. I celebrated my birthday and retirement with friends and family. We are going to Florida to visit my sister and father. Today we joined the gym. A generous gift from my sister. I avoided going for a week but today was the day to begin the steps toward getting my life back on track. It wasn't easy, but to my surprise I didn't keel over from exhaustion. I did a few minutes on the elliptical machines, some exercises on weight machines and a short ride on the stationary bike. And I lived to tell the tale. The endorphins  lifted my depression a bit. Next week I will go for my three month check up to see if I am still in remission. My father's conditions worsen and my sister has her hands full. But today I have hope...

Thursday, June 11, 2015

tiptoe

My last blog post mentioned the fact that we never know what is going to happen next. My sister called it a crap shoot...this has proven to be true for me in the past month. On the day I went to have my final chemo treatment I had been suffering from severe headaches all weekend. I was also running a slight temperature. I assumed it was a sinus infection. When I went to the chemo lab they decided not to let me get the treatment until I had a CT scan and a MRI to check out the headaches. They wanted to make sure that the cancer had not spread to the brain. I was terrified. The next day the headaches continued to worsen so we decided to make a visit to the emergency room on Tuesday evening. We waited over four hours, a scan was done and I found out it was a brain bleed that was causing my headaches. Thankfully it was a small bleed so no surgery was required. The brain bleed probably happened because of the blood thinners I take to manage the blood clot they found last February. The blood thinners were reduced and I had all sorts of scans and tests to make sure I didn't have a brain tumour and I went home. My sister had arrived from Florida to spend Mother's Day with me. Since it was the first Mother's Day without our mother we decided we wanted to be together. On Sunday we planned to do some shopping together, visit Starbucks, spend some time at a local meditation center and then go out to eat. We made it as far as the shopping. I remember arriving at the store, picking out a few items, placing them in the cart...and then my memory has a lapse. I am told I froze in front of a shelf of towels. My sister came back to where I was and couldn't get me to respond. She thought I was joking with her and threatened to call the paramedics if I didn't answer her. As she dialed 911 she finally realized I was unable to respond. She tried to get me to sit down but I only put one arm around her neck and tightly grasped the shopping cart with the other hand. The paramedics arrived and took me away. They told her it was a stroke but it was actually a focal seizure. The next thing I remember is opening my eyes in the hospital emergency room with no idea of where I was or how I got there. I was quite confused for some time but gradually the confusion has faded though I still worry about brain damage or the possibility of having another seizure. The seizure happened because of irritation from the brain bleed. As the brain bleed resolves then the chance of a seizure lessens but the fear is still there.

So what was supposed to be a celebratory time of finishing my chemo has become a complicated time of new medications and visits to neurosurgeons and neurologists.  A scan has shown the blood clot has decreased in size to the point it was not visible on the scan. Also, there were no signs of cancer on the scan. Some good news in the middle of crisis.  On the down side I can't drive until I am seizure-free for six months. I can't return to work. I feel discouraged and frightened by these new complications. Things are probably not as bad as they feel but who knows?  I am presently tiptoeing through the tulips waiting for something worse to happen or for things to improve.  I'll let you know...


Monday, April 27, 2015

crap shoot: something that is random, not based on skill.

Today the all-important blood levels held and I had another chemo treatment.  It was a day of mixed emotions. Isn't everyday?  Seems to be for me.

The fact that after today I only have one more treatment is very exciting but also scary. The realization I am returning to real life is a bit daunting. I'm glad to be getting through but at the same time I have been at home since August and cancer has changed me in many ways. Will I be able to keep up with life situations the way I did before? (And sometimes I didn't handle life the way I wanted so will it be even harder now...with physical limitations and chemo fog?) We shall see... And of course there is always the possibility of cancer returning hanging over your head but I'm hoping with time that fades some. I want a fresh start...a new and better life...we shall see...

Then one of my friends who I have chemo with was told today that treatments were not working and she should consider hospice. The doctor told her she needed to think about quality of life since she struggles to come in but is receiving no benefit from the chemo. She and her granddaughter were crying and I just wanted to hold them in my arms and take care of them. Make everything better. I know it is impossible for me to do but its what I wanted. So I said the few words of comfort I could and hid my own tears because it is what seemed best at the moment. Watching their pain was excruciating. But it is all part of the cancer nightmare.

Later that afternoon I met a woman who has been cancer-free for seven years. She beat the odds with a cancer that often comes back quickly and with a vengeance.  It gave me hope! Talking with her lifted my spirits from the emotional morning and as I left the infusion lab I felt new strength. This could be me...I could beat the odds too.

As we were leaving, a woman approached me. I met her at my very first chemo treatment last September. She was back because her cancer had returned again. She had almost two years cancer-free but it returned. She had more chemo and went back into remission but it only lasted three months and she is back for her third round of chemo. I felt my hope fading and my heart went out to her and the fear she was feeling. She acted very positive  it would just be 'maintenance chemo' and she would go back into remission. I hope that is true for her and will support her in this effort any way I can.

So after bouncing up and down all day I finally arrived at home for a long nap. Or actually several short ones. I feel good (steroids) and am ready to keep battling. I discussed all this with my amazing sister and she kindly reminded me that life is a crap shoot, even if you don't have cancer.  We just don't know what will happen from moment to moment so we take each day at at time and try to have hope and strength and appreciation. Yep that's what we try to do. 

Saturday, April 25, 2015

at the window (in the light)



The softness of the day filtered through the shabby screen
bathing the two of them in a weak and desolate light.
The window flew open and hundreds of doves were startled
scattering into the dark gray sky.
The beating of the wings pounded in her ears
As the birds rose higher, they disappeared from view
The quiet they left spread like fingers around her heart
She wanted the birds to come back, surround her pain
With their gentle sounds and proximity.
She needed everything close, within reach, to hold both
Of them in the sway of life.
It was all too fragile, all too delicate.
Something substantial would save them from
The tenderness of the moment that provided
Injury and healing  all at once.

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...