With respect to health care, this has been a roller-coaster week for me emotionally.  Things started very badly, but the good “guys” pulled me through.

As I mentioned in a previous post, I have been disappointed in Dr. L’s care recently.  That has continued, with several more problems concerning my most recent chemo treatment and the after-care.  All the issues boil down to inattention on her part, leading me to believe that the poor woman either has far too many patients or has something overwhelming going on in her own life.  Either way, I feel very bad for her and very frustrated for myself and whichever other patients are getting the short end of the stick.

To top that off,  on Monday afternoon, I saw an ophthalmologist who was not very knowledgeable and who was rude and condescending.  He even went so far as to tell me that my fantastic opthhalmologist and my top-of-his-field retina specialist in Winnipeg don’t know what they are talking about.  These people have been caring for me for several years, and have even sent me to the Ottawa Eye Institute for advanced testing.  Their knowledge and professionalism on their worst day far surpasses anything that Dr. Yokel can muster on his best.  After I saw this man, I was ready to throw in the towel.  I sat in the grocery store parking lot and cried.  I felt that if my doctors didn’t care about me, there was no reason to continue with this arduous treatment.  The fact that I had developed pancytopenia with severe neutropenia didn’t help matters at all, but I didn’t have confirmation of that fact at the time.

Fortunately, when Terry and I went to my scheduled appointment with Dr. L. on Tuesday, she was so busy and so far behind that she didn’t have time to see me.  She sent in Dr. S., who is not even an oncologist, but who was, as Terry put it, “exactly what [I] needed”.  She was extremely knowledgeable, kind and caring.  Hallelujah!  She told me that my blood counts (red, white and platelets) were too low to do chemo as scheduled on Wednesday.  She, in consultation with Dr. L., prescribed higher and more doses of neupogen injections.  (Now we’re up to $3900 every 3 weeks for neupogen alone — thank God for a good drug plan!)  Dr. S. also suggested that the next time I have purpura and bleeding incidents because of low platelets, I need to come in to the hospital.  I knew that when it was happening, but I said to Terry at the time, “If I had received a better reception when I had called in the past, I would call now, but forget it!”

Dr. S. also got me in to see the head of ophthalmology at U. of Toronto, who was in town for the day.  This man, Dr. H., was also wonderful.  We discussed my situation, and he asked me if I am a physician!  LOL  He problem-solved with me and for me.  He made four suggestions, two of which we are already doing.  The two new ones are pre-medicating with oral prednisone two days prior to chemo and using a corticosteroid eye ointment.  We didn’t have a chance to do the former this cycle because I didn’t see a doctor at the cancer clinic after I saw him, but we can put it in place for the next cycle.  I am so grateful to have seen Dr. H.  It was amazing to be treated with respect.  During my low point on Monday, I had said to Terry, “I’m a person, not just a bunch of cancer numbers!”  Both Dr. S. and Dr. H. recognized that fact and treated me with respect and kindness.

Second Day Hydration At Home With Owen

Finally, at the chemo unit yesterday, I had a very caring nurse.  Not only did she do her regular job with skill and kindness, but she also had to keep tracking down Dr. L, who hadn’t written chemo orders yet, then forgot to order end-of-the-day i.v. antiemetics and second-day hydration.  Because the hydration orders didn’t go through on time, the meds and i.v. pump didn’t go out with the pharmacy’s delivery driver.  As a result, another “good guy” came to the rescue.  The owner of the pharmacy, himself, brought me all the supplies.

Of course, throughout this whole week of ups and downs, my darling Terry and my kind and generous friends have been the constants who kept me from crashing on the rocks.  I could not have made it through my low points without any of them.  They are the “good guys” who are always there for me, never out-of-reach.  They are the people I love and cherish, the reasons I keep going.

Thank you all for being there for me.  Thank you for giving me a life worth fighting for.  You are my heroes.

Today is Thanksgiving Day in the United States.  Although I live in Canada, I am American, and this is my favorite holiday of the year.

This year I’m even happier than usual.  I was scheduled for chemo yesterday, so I should be pretty sick and miserable right now.  However, my blood counts were too low, so we’re going to try again tomorrow.  That means I get this bonus day to relax and enjoy myself.  I am one happy camper!  I am curled up in bed with my precious Holly dog.  The fireplace is going, and I’m drinking cinnamon coffee.  I’m set to watch all three hours of the Macy’s Thanksgiving Day Parade — something I have done since childhood.  I don’t have a lot of happy memories that involve my mother, but watching the parade together is one of them.

Yesterday, two darling friends came over to help with the Christmas decorations.  They got the lights on the tree for me — a job my tired, achy body just wasn’t up to this year.  They also brought dinner, including dessert.  I am so grateful.  It was wonderful to see them, and their help made an enormous difference.

We’ll be eating some of the food they brought for dinner tonight, as we ended up going out with another friend yesterday evening.  This woman is amazing.  She remembers extraordinarily many details about a myriad of people because she truly cares.  She uses all the details the way an artist uses a paintbrush, so she is a fascinating story-teller.  She is a high school history and geography teacher, and I imagine her classes must be magical.

All in all, this is shaping up to be an extraordinarily thankful Thanksgiving.  I am surrounded by so many loving friends, my precious husband and my beautiful doggies.  I got CT results this week, and the lymphoma in my lymph nodes is shrinking dramatically.  (There is a new nodule in my lung, and the lesions on my liver haven’t changed, but we don’t even know if they are cancerous, so we’re just going to watch and wait with those.)

As I lie here in hedonistic comfort, I can’t help thinking that life doesn’t get much better than this.  For all those who make my life the joyous celebration that it is, I give thanks to you and for you.  Happy Thanksgiving!!

You read it here first folks — I’m feeling a little grumpy.  As most of you know, I am neither a whiner nor a malingerer.  I tend to put a pretty positive spin on most things, and I’m reasonably adept at finding silver linings.  So when I tell a health care provider there’s a problem, it annoys me when I’m not taken seriously.

Granted, some problems are bigger than others.  Ten years ago, I told my then family doctor that my back problems were going from bad to worse.  She didn’t take me or my physiotherapist seriously, and I ended up losing bladder function because I developed cauda equine syndrome.  This time, the problem is nowhere near as serious, but it is painful nonetheless.

In fact the problem is painful enough that I have taken to wearing my sunglasses in the house, even at night.  For the first week of each chemo cycle, my eyes become so inflamed and sore that I can’t read, watch t.v. or function very well at all.  When I awake in the morning or from a nap, they are crusted closed and have to be pried open.  I mentioned this problem to Dr. L., and asked her if it is possible to develop a chemo-induced conjunctivitis.  She replied, “I’ve never heard of it with these medications,” and suggested that I go to the drugstore to buy some eyedrops.  When I asked if there was any particular kind I should get, she had no suggestions.  I tried the preservative-free type that my opthalmologist had suggested when I was diagnosed with ocular rosacea.  They were no help at all.  I eventually talked to the pharmacist.  She said, “They’re goopy.  You need an antibiotic.”  I have been using over-the-counter polysporin ever since.  It has taken a very long time, but my right eye is fine now, and my left eye is almost better.  Ultimately, I am going to have to ask my (current, wonderful) family doctor to prescribe something.  Fortunately, I’m scheduled to see her in a couple of days for my H1N1 vaccine — thank Goodness!

I am not sure what is happening with Dr. L.  The past couple of times I have seen her, she has been woefully behind schedule, and has seemed so distracted that she can barely remember who I am, much less focus on my care.  On Friday, I went for my CT scan to find out if the chemo is working.  Fortunately, I looked at the requisition form ahead of time.  Dr. L. had requested a CT of my “thorax, abdomen & pelvis”.  I asked the tech if that included my neck, because the cancer started in my neck.  She told me that it did not, but she would call Dr. L, if she was in, to attempt to get the order changed.  According to the tech, Dr. L. agreed to change the order, but stated that “she doesn’t always like to do the neck.”  There have been several other equally fundamental issues, and my confidence in Dr. L. is eroding.

I am not sure what to do about this problem, but Terry has agreed to accompany me to my next appointment.  He will act as my advocate, if necessary.  Wish me luck!  And in the meantime, I’ll be the one in sunglasses.  😉