Getting a Transfusion and Presents for Christmas

During my recent cancer treatment, I received blood transfusions from an anonymous stranger in Winnipeg.  Whoever the donor was, he/she saved my life.  If you would like to do the same for someone else, and you live in Canada, you can contact Canadian Blood Services (1-888 2 DONATE, or http://www.blood.ca) to make an appointment.

Further, if my lymphoma were to relapse, the standard treatment would be salvage chemotherapy followed by a stem cell transplant.  If you are willing to sign up as a potential stem cell donor (a much more involved process than donating blood), you can get information at the following website:  http://www.onematch.ca.

Although I was a regular blood donor in my younger years, I knew that lupus precluded me from donating blood.  (There are too many antibodies in my blood.)  However, I was disappointed to learn that lymphoma now precludes me from being an organ donor as well.  If you’re healthy though, you can help in a myriad of ways.  It takes time and energy, but how cool is it to be able to save someone’s life?!

Well, the chemo is done.  My hair is starting to grow.  (I look a bit like a baby duckling right now.)  Ostensibly, the recovery is beginning.  I have started physiotherapy; I made it to the gym once last week; and I bought groceries all by myself for the first time in months.

At this point, I am still very weak, and activity of any kind quickly exhausts me.  I need extraordinarily much sleep — maybe even more than when the lupus is flaring.   There are so many things I want to do.  I feel like I have let things fall apart while I was doing chemo (not that I had any choice in the matter.)  It’s frustrating that my body won’t cooperate.  Obviously, I need to practice patience.  Why is it so much easier to be patient with other people than with ourselves?

It’s odd to finally have time for feelings.  I am feeling a bit lost.  I can’t quite imagine what my life is going to look like from now on.  First, I don’t know how much strength and stamina I’m going to re-gain, or how long it’s going to take to re-gain it.  I doubt that I’m going to make it back to teaching, so I don’t know what my contributions to the world are going to be from now on.  I keep hearing the lines from that song in A Chorus Line, “Who am I anyway?  Am I my resumé?  That is a picture of a person I don’t know.”

The only thing that’s clear to me right now is that I am surrounded by the most amazing people on the planet.  I know that whatever happens, you will support me — not because of who I am, but because of who you are.  You have demonstrated your true character and personalities throughout these long months.  You are intelligent, kind, caring and generous to a fault.  I may have multiple, trying health issues, but I still feel like one of the luckiest people alive — because of you.  I will never be able to thank you enough for your presence in my life and for all that you do to make me happy.  I don’t know what the next months will hold, but I know that you will be there, so all will be well.

I still can’t sleep, but this time it’s because I’m so excited — I’m getting my picc line out today!  I saw Dr. L. yesterday, and got my CT scan results.  My lymphoma is in complete remission!  Dr. L. said, “It’s unequivocal.”  She also said, “You had so much to go through,” and she kept saying, “You did it!”  I replied, “WE did it; it was definitely a team effort.”  Everyone reading this blog was a part of that team.  I will never be able to thank you enough for getting me through this.

My particular brand of lymphoma has a 50% recurrence rate, but with luck, I’ll be in the happy 50%.  The CT scan also showed that I have now developed diverticulosis.  I’m guessing that’s because of the side effects of the vincristine.  Again, with luck, that will never develop into anything more menacing.

Right now, I’m still weak and exhausted.  Dr. L. said that each hospitalization and each complication took it’s toll.  It’s going to take a long time to recover, but now I finally can.  As soon as the picc line comes out, I will feel well and truly cancer-free, and ready to begin picking up the pieces.

Along those lines, my first physiotherapy appointment is tomorrow.  I have also been referred to a neurologist — a Dr. Howse, which I think is very funny.  I hope this one has a better “bedside manner” than the Dr. House on t.v.!

Just to prove that I’m getting on with my life, I cleaned out and scrubbed the third floor frig this morning — something that should have been done a long time ago.  It’s funny how mundane tasks can be joyful under the right circumstances.  🙂

On that note, maybe I’ll go fold some laundry. . .

It’s the middle of the night.  I took Ativan at bedtime, but I’m still unable to sleep.

I’ve been home from the hospital for a week now.  Dr. M. (who is wonderful and was the Oncologist on call at the time) tried to get my CT scan results before I left the hospital.  Because he was unsuccessful, I have been waiting for what feels like forever.  I’m scheduled for a chemo follow-up appointment with Dr. L. tomorrow afternoon.  I will have bloodwork first, then wait an hour, then see her.  At that time, I should find out the CT results.  Then I will know whether or not the chemo worked.  Have I achieved a complete remission or a partial remission?  If the remission isn’t complete, what’s the next step?  I have been anxiety-ridden all week.

I’m hoping for the best.  I bought gifts for the chemo nurses and a bottle of champagne for Dr. L.

Whatever happens, I’ll keep you posted. . .

It has been a long time since my last post; I apologize.  The truth is that I have been pretty sick for awhile.

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.  😉

I feel like I have been in a perpetual haze since I started chemo; I am never fully conscious.  It’s oddly unpleasant, but certainly not earth-shattering.  Time seems to progress in fits and starts for me, rather than in its formerly orderly, linear fashion.  I apologize for not updating this blog more often.  I simply have to wait for the haze to clear enough so that my thoughts can even form.

I saw Dr. L. again on October 13th, and it was an interesting appointment.  It turns out that my particular brand of lymphoma is very strange indeed.  Dr. L. had been speaking with a hematologist and a pathologist, both at Harvard.  They discussed my case at an International Hematology Society conference, and “no one knew what to do with it”.

It seems that morphologically, it looks like diffuse large B-cell lymphoma (DLBCL).  However, a Ki-67 proliferative index of greater than 95% points to Burkitt’s lymphoma (BL).  To complicate matters further, in 46.5% of the 200 nuclei studied, there was a myc trisomy, meaning there were three copies of the myc gene.  The weird thing is that in Burkitt’s, there is almost always a translocation of one kind or another on the myc gene.  I don’t have that translocation, but the trisomy 8 is very unusual, and again, points to BL.

The question was, do we treat this thing with the DLBCL protocol, or do we go to the Burkitt’s treatment?  The Burkitt’s treatment requires a 3 month hospitalization with multiple rounds of i.v. and intrathecal (directly into the spinal fluid) chemotherapy.  It sounds absolutely horrifying to me.  Ultimately, Dr. L. decided that the most important factor is the way my particular lymphoma is acting clinically.  It is absolutely not acting like Burkitt’s, so she decided to go with the DLBCL treatment — the one I had already started.  I am, naturally, thrilled with that decision.  Of course, there is still some uncertainty about whether we’re doing the right treatment, but we can’t know for sure.  Dr. L. is brilliant, and I would assume the other specialists she has spoken to are brilliant in their own right.  I believe we are doing the right thing, under the circumstances.  Only time will tell.  At least I have an interesting academic puzzle to ponder while I go through all this.  God knew that if I had to get cancer, I needed it to be interesting.

Also on October 13th, I had a picc (percutaneously inserted central catheter) line installed.  I’m very happy about this because it means that the nurses will have easy access to a vein even if I’m dehydrated.  No more bruising all over my hands and arms.  Yay!

The very next day, I started cycle 2 of my chemo.  Dr. L. put more precautions in place, and things went much, much better than the first time.  First, Dawn, my incredibly skilled chemo nurse, gave me the Rituximab very slowly.  That meant I had only a very small reaction, easily controlled with ventolin.  Then, Dr. L. had left orders for an additional i.v. antiemetic to be given just before I left the chemo unit.  (I was still there for almost 8 hours, but that’s okay.  It’s better than the alternative.)  Dr. L. also prescribed another oral antiemetic for me to take at home.  Additionally, she ordered a visiting nurse to assess me later in the evening, and she set things up for me to return to the chemo unit the next morning for more i.v. antiemetics and hydration.  This worked incredibly much better, and I am more than grateful.

All in all, things are going okay.  I still have fairly regular, unforeseen bumps in the road, but I am confident that when I see Dr. L. again, she will be able to prevent some of them from happening again.  The whole process involves a lot of problem-solving.  Fortunately, I have friends who give me good advice and a doctor with an excellent mind.  I don’t know what the future will hold, but I am confident that it will be interesting.  Thank you, dear friends, for holding my hand along the way.

Every once in awhile the niggling fear of the unknown makes its way to the front of my mind and causes a smallish case of nerves.  This morning I awoke feeling a bit apprehensive because Dr. L. has not called me with test results.  She told me that the bone marrow biopsy results would take about two weeks and that she would call me when she knew anything.  The last time I saw her, she didn’t yet have results from the gallium scan or the bone scan either.

Tuesday would have been two weeks for the bone marrow biopsy, and I haven’t heard anything.  I am hoping it is simply the case that Dr. L. has been wildly busy, or that the results have been delayed — not that Dr. L. is sick and away from work or that she has bad news for me and doesn’t want to tell me over the phone.  Rationally, I know that it is pointless to worry, that in all likelihood everything is fine and that even if the news isn’t great, worrying won’t change the outcome.  Still, in spite of my best efforts, that niggling doubt remains.

Whatever the reason for the delay, I am bound to learn something on Tuesday when I see Dr. L. once again.  Oddly, I am looking forward to Tuesday (because I hope to get answers), but dreading Wednesday (when I will begin my second chemo cycle).

The good news is that Monday is Thanksgiving here in Canada.  I am looking forward to a big, family get-together (a sure distraction from the niggling doubt).  I love this holiday, probably because there are so many blessings in my life.  If you are reading this blog, I’m guessing that you, too, enjoy a large number of blessings.  So, to plagiarize a popular “grace”, . . . for all that we receive each day, let us be truly thankful.

Amen.