Sunday 15 December 2013

Now Mom Needs the Miracle

Last Tuesday evening, my mother fell down the stairs to the basement floor. She was taken by ambulance to the local hospital with a trauma centre. She couldn't feel or move her legs. Initially they thought she was in spinal shock, like a concussion but of the spinal cord. With this, ability can return. But it is no longer spinal shock. And she has a fracture in her neck (and several other places). There is also some level of paralysis in all four limbs as well as some of her breathing muscles. Her heart started to fail that first night and it was thought she needed a pacemaker to survive.

And that is what she wants, to survive. When we asked her of her resuscitation wishes she said clearly, "I want to live." When we explained we would live the rest of her life in a hospital, she didn't change her mind, she just asked for the treatments that were necessary.

Mom had a fall thirteen years ago on an escalator in the Milan train station. She was behind me and fell backwards. I panicked like a child and she told me to calm down, she was alright. And she was. A few bandaids later, she was insisting on carrying her own luggage again

This is what I am made of. Cancer, shmancer! Calm down. I'll carry my own baggage. I want to live.

But today, my mom is the one needing our prayers, needing a miracle. It is very hard to let God's will be done. Mostly because we don't know what it is. Many of you have been keeping me in your prayers. I am still stable. For the next while, would you please keep my mom in your thoughts and prayers? Thank you very much.

Monday 25 November 2013

Stage IV Snapshot: Why get a PICC or a Port

These are my arms after a week in hospital without a PICC or Port. Oh, how I missed them!

Perhaps I'll get one before my next treatment.

Friday 22 November 2013

A Guest post from Geoff on my Hospital Stay

I have been a little quiet again. First, I spent a week at my brother's helping out after his wife had major cancer surgery. I came home on the train with nothing worse than swollen ankles. Then all hell broke loose. I will let Geoff tell the story, because I was in no position to. Here is a very scary story do infection gone bad. Surprisingly, this could be the way I go out from cancer, but not yet.

From today's Geoff Takes On (links added Nov 24):


A couple of weeks ago, on a Saturday evening, Kate and her mom returned from a trip.  I picked them up at the train station and both were tired, but in good spirits.  Sunday morning, Kate started feeling a little under the weather - vomiting, chills and coughing.  By Wednesday evening, she was delirious, incoherent and clearly hypoxic with blue-tinged lips and eyelids.  She had brought our ten-year-old daughter to bed and fallen asleep beside her.  I woke her up and we moved to the adjacent bedroom, where I tried speaking with her.  She was make absolutely no sense and was having trouble answering simple arithmetic questions.  Then she realized she had taken a double dose of the medication she is taking for issues related to her cancer, including an opiate for pain.

I was very concerned, and Lena was terrified despite Kate's slurred assurances that she would be fine.  Finally, Lena and I insisted on taking her to the hospital.  When we arrived we went directly to ER nurse's station.  I could sense a bit of hostility from the triage nurse and could imagine her thinking "They came to the ER for a cold?".  The nurse took Kate's vitals and I could see the concern sweep over her face - her heart was racing, her blood pressure was very low and her oxygen saturation was at a scary 75%.  She told us that Kate likely had an infection that had gone septic (entered her bloodstream).  Seeing how terrified Lena was, she suggested we stay in the waiting room while Kate was brought back to be hooked up to oxygen and fluids.  Once that was done, Kate would look a bit better and hopefully be more lucid.  Then I could bring Lena back to see her mom in a better state and that would calm her down.  This was the first of many acts of kindness we would experience that night.

Indeed, we brought Lena back and she kissed her mom and had a few words with her and she heard the doctor, Dr. Caytak, tell me that Kate had pneumonia that likely went septic but that she was being treated with powerful antibiotics and fluids and would be fine.  Eventually, the nurses and doctors convinced me to take our daughter to my in-laws, which I did.

When I returned to the hospital about an hour later, I walked into Kate's room and she seemed to be sleeping fitfully.  A few minutes later, a doctor from Medical Oncology came in wanting to examine her.  He tried waking her up, first calling her name, then gently shaking her.  She would not awaken.  The doctor became more insistent:  yelling in her ear, shaking her vigourously, jabbing her sharply in her feet with his pen and pressing very hard on her finger nail with his pen and finally shining his penlight into her eyes.  He told me:  "This is very concerning" and rushed out to consult with the ER doctor.  Dr. Caytak showed up, staying in the doorway looking from Kate to the monitor that was tracking her vital signs.   Then all hell broke loose.

The doctor yelled, "She's going into respiratory collapse!" and he called to an orderly to come bring her to the Resuscitation Area.  The orderly sauntered toward the room and the doctor yelled "Hurry!  Hurry!"  The orderly ran in and rushed her down the hall towards resuscitation and every doctor and nurse on the floor exited right behind them.

"Hysterical" isn't a very flattering word to describe someone's state of mind, but that's exactly what I was.  In that moment I thought my wife was going to die.  I was sobbing and begging for her to live, for the doctors and nurses to save her life.  I couldn't get my head around being without her.  I couldn't imagine how I would tell our beautiful, sweet little girl, who just an hour earlier heard the doctor say "She'll be fine", that her mommy passed away.

A nurse named Dan came out and started to try to talk me down, explaining that they were getting ready to intubate her and put her on a respirator and that she was surrounded by a very professional team that was well trained and equipped to deal with the situation.  He spent maybe five minutes with me, but I'll never forget him and the enormous gratitude I felt for him giving me that faint bit of hope.

Several minutes later, the medical oncologist, Dr. Holmes, I believe, came out to say that as they were preparing to intubate her, Kate awoke from her slumber (wondering, she would later tell me, what the hell was going on and why was everyone standing around her like that) and was talking.  I was able to see her, still sobbing, and eventually they returned her to her room.

I don't remember who explained to me what had happened or when they told me, but here's the story:  When Dr. Caytak returned with Dr. Holmes to Kate's room and witnessed his failed attempts to arouse her from her sleep he saw that her blood pressure and respiratory rate were dropping - essentially they feared she was about to stop being able to breath on her own.  They explained that her septic infection lowered her blood pressure and respiratory rates to an already low level.  Then someone realized that among the drugs she had doubled up on in her delirium was a long-lasting opiate called dilauded and when that started kicking in, her vitals started declining even more.  Once they realized this, they were able to counteract the effects with an anti-narcotic medication called Narcan and her vital signs stabilized.

The next several hours were very stressful:  her blood pressure and respiratory rate remained low and here heart rate fast, but they were stable and eventually began to improve. Kate was eventually moved to a part of the hospital called the Acute Monitoring Area, where her vital signs could be monitored continuously.  After a day or so there, she was released to the General Medicine ward and was eventually released the Saturday after we first took her to the hospital.  Unfortunately, the day after she was released, she was feeling worse and had to be readmitted.  Finally, just yesterday, eight days after we rushed her to the hospital, she was again discharged, hopefully for good this time.  Though her recovery from the pneumonia will likely be long, she is feeling much better than she did even two days ago.

As an added bonus, now that she's home again, she can work on all the dishes and laundry that have piled up for the last eight days.

***

So many people to thank.  I was really impressed by the care Kate and I got at the hospital.  I don't know the name of the triage nurse who saw her first, but she along with the Nurse-in-Charge, Bonnie, got Kate in to see a doctor right away and showed tremendous compassion towards one very scared little girl.  I cannot say enough about Drs. Caytak of the ER, Holmes of Medical Oncology, Sun of General Medicine.  Kate's nurse that first night in Emergent Care, Anny, was just the type of person who should be in health care:  professional, empathetic and very, very kind and just a quality human being.  I really can't thank her enough.  Also, Dan, who I talk about above, who had to deal with me at what had to be the scariest moment of my life.

Kate had the help of so many doctors, nurses, orderlies, respiratory therapists and physiotherapists over the next several days that I can't possibly mention them all here, but am grateful to everyone in Emergent Care, the Acute Monitoring Area, the General Medicine Ward and the Lung Disease Ward.  Also many thanks to all the doctors from Medical Oncology who treated her after she was admitted the second time, notably Dr. Foeschl and Dr. Condan.

***

Finally, I can't thank enough all the friends and family who visited Kate or called or encouraged her via Facebook and for supporting me and Lena.

Though I complain a lot about suburbia, Kate, Lena and I have among the best neighbours in the world.  I especially want to thank Barb, who cooked for Lena and me, who visited Kate in the hospital and who picked Kate up at the hospital and drove her home so she could spend a few hours with her family on her birthday.  I also want to thank Pam for, among many other things, looking after the dog so I could spend more time at the hospital with Kate. 


Saturday 19 October 2013

No, I Haven't Been Ignoring Breast Cancer Awareness Month

I haven't, really. In fact, I have been busy. My daughter and I walked the 5km CIBC Run For The Cure a couple of weeks ago. Between the two of us, we raised nearly $2,000 for the Canadian Breast Cancer Foundation, thanks to the generosity of our family, friends, neighbours and teachers. Much of that money will go to research. In fact, have a look at this video about how the Foundation uses the fund that are raised.

I have also been reading posts by my favourite bloggers. I have even written a guest post for "Telling Knots" which was published today. The timing is apt, as yesterday was the two year anniversary of getting my biopsy results, the day we told our daughter I had in curable breast cancer. Please stop over at "Telling Knots" to read my post and the other guest posts she is publishing this month. Like many bloggers this month she is putting the focus on those of us living with mets (that is, advanced breast cancer).

Sunday 29 September 2013

Stage IV Snapshot -- Now Asthma



With cancer, if it isn't one thing, it's another.

I managed to catch my dear daughter's cold this week. It came on strong. Within days, all I could do was sleep -- if I could sleep over the noise of my breathing. My voice is frequently a mere squeak. Fortunately, I had an appointment with my GP on Friday. He diagnosed me with virus-induced asthma. I have had "noisy breathing" off and on but never realized what it was. Now I have two puffers that generally keep my breathing silent.

Tuesday 24 September 2013

I'm Not Doing It, The Port That Is

Just a quick update, folks. After much thought, and discussions with nurses and my husband, I have decided not to go ahead with the insertion of the Port-a-Cath on Thursday.

The key factor for me was that my current treatment is oral Tamoxifen daily and infusions of Herceptin and Pamidronate every three weeks . These drugs don't damage the veins like chemo does. So I don't really need the port now. At some point, I should expect that this treatment will fail. Eventually I will have to go back on chemo. At that point, I will need either a port or a PICC. But I will wait until then.

For those of you who are deciding whether to get a PICC or a Port-a-Cath, here are the pros and cons as I see it. Please check with Dr. Google to learn about other aspects that I didn't experience:

Note: as soon as I hit "publish" I thought of more items for the list. They are marked with a "*".

Port-a-Cath

Pros
  • Protects veins from chemo.
  • Once the incision heals, you can shower and swim normally.
Cons
  • Both inserting and removing the port require minor surgery. Healing from the port insertion feels like you've been kicked by a mule. I was aching and taped awkwardly, which made me walk like Igor from the old horror movies.
  • *The port site is exactly where your child's head cuddles you. Seat belts and bra straps will also irritate the site.
  • The port may erode the skin above it. In my case, I had persistent bruising at the port site (not normal) and later an infection.
  • I could feel where the wire looped up my neck. It was a little painful. Definitely icky.
  • In Ottawa, an appointment with a nurse is required to use the port for a blood test. If you want to leave the Gripper needle attached between the blood test and treatment, sterile dressing is required. So much for showering normally.
  • If your port isn't accessed every four weeks, you need a nurse to come to flush it.
  • The incisions (there are two of them) and the port site could form keloid scars. At the suggestion of my dermatologist, my doctors injected Kenalog (a type of cortisone) at the incision site to reduce the chance of keloids forming. It worked, so far.

PICC

Pros
  • Protects veins from chemo.
  • Painless accessing of the PICC for blood tests and IV medication.
  • Removing the PICC is easy. They slowly pull it out. I watched; it was cool.
Cons
  • You walk around with a bit of tubing sticking out of your arm the whole time. This is covered with sterile dressing. It is annoying in the summer. I had a weird tan that year.
  • A nurse must come weekly to change the sterile dressing and flush the PICC line.
  • You can't swim.
  • To shower you have to wear a plastic sleeve to keep the dressing dry. Your arm never gets a good scrubbing.
  • In Ottawa, an appointment with a nurse is required to use the port for a blood test.
  • If you are sensitive to adhesive, like I am, you may need to use Mepore (paper dressing) to avoid irritation. I later changed to IV3000. My skin was fine while I had the PICC, but I had some scabs form after the PICC was removed and the dressing taken off for good.
No PICC or Port

Pros
  • No holes in your body.
  • You can swim and shower normally.
  • You can walk in for blood tests either at the hospital or a local blood lab. No appointment necessary.
Cons
  • Chemo can damage your veins.
  • Blood tests and treatment will require a poke in the arm. If your veins are hard to find, as mine sometimes are, maybe two pokes. You may bruise at the site of the poke.
That is all I can think of. I hope these pros and cons will be helpful to someone that's just starting out with cancer treatment. I know I will come back to the list when I have to start chemo again.

Please add a comment with your experience with PICC lines and ports.

Saturday 21 September 2013

Bye-Bye Port-A-Cath, Forever?

Well, so much for that Port-A-Cath. After only ten months, my Port-A-Cath abscessed and had to be removed. Apparently this usually happens in patients with little extra fat. I guess I just got lucky, not thin.

The removal surgery, two weeks ago, was fairly straightforward. It was done with local anaesthetic and dissolvable sutures. I needed to be careful not to lift too much, which is hard with a new puppy who isn't confident on the stairs. Afterwards, I had to have my Herceptin and Pamidronate by IV, which went well.

Next Thursday, I am scheduled to have a new port inserted on the right side, just in time for my next treatment. But I am having second thoughts. I have been off chemo nearly a year. The Tamoxifen is keeping my tumours stable. I get Herceptin and Pamidronate every three weeks. If I understand right, they aren't as hard on the veins as chemo is. I don't know if I have mentioned it before but I form keloid scars -- scary scars that keep growing for years, long after an injury has healed. Did my skin's nature play a role in my port's abscess and erosion?

I could really use some advice. Do I really need to get a new port put in? Should I just wait until the day when I need chemo again? Or should I be protecting my veins from the Herceptin? What do you guys think?



Friday 30 August 2013

Stage IV Snapshot -- Emergency?


None of us wants to go to the Emergency Room, but Tuesday night I was pretty sure I should. A sore erupted on the edge of my Port-a-Cath. That's not just unsightly. The catheter could take the infection straight into my bloodstream. I've been septic before and don`t want to risk it again. (Can you guess I spent some time with Dr. Google while waiting for a home care nurse to return my call?)

I have had persistent bruising at my port site, particularly to one side. It just wouldn't disappear between treatments, which are every three weeks. In fact, at my last treatment, I'd discussed it with my chemo nurse. She didn't have any advice for me. Earlier this week, I noticed that there seemed to be a small sore over the bruised area. I showed it to my Sweetie and we both said "hmm?" We were on our way to Montreal for a short visit and thought nothing more of it. Then when we returned to Ottawa I took a closer look at it after getting out of the shower. It was now clearly infected. The home care nurse wasn't sure what to make of it and wouldn't be able to see me until midnight or later. I called my family doctor's after-hours service and that nurse was more definitive: I should have a doctor examine it within the next four hours. Great.

We asked my daughter to hastily repack her backpack for a spur of the moment sleepover at my mom's and off we went to the hospital. Four hours later, the ER doctor assured me that I had no signs of sepsis, but certainly needed antibiotics, starting with an immediate double dose. He also suggested I give the Cancer Centre a look at it the following day. The nurse dressed the wound with antibiotic cream and gave me enough Cloxacillin that we didn't have to stop at the pharmacy on the way home. Instead we were allowed a few hours of sleep.

The next day, my Patient Designated Nurse put me in touch with Sheryl of the hospital's Port Team. She was able to meet with my when I came early for an unrelated specialist appointment (verdict of that after three months and two hours of waiting: no hip surgery). Sheryl has arranged for daily nursing to change the wound dressing. And she broke the news that my Port-a-Cath probably needs to come out. I now have an appointment next Tuesday to have it examined. It sounds like the infection needs to have subsided before they will risk the surgery. Whether they will put a new port in at the same time, I don't know. All I can tell you is that I`ve learned a few things in my ten months with my Port-a-Cath:
  • The ones on the left side have more problems.
  • Bruising isn't normal.
  • And sometimes they erode the skin over top them.

Thursday 22 August 2013

Stage IV Snapshot -- Bad Girl!




We have been talking about getting a dog. So when we found out our neighbours were going away, we agreed to look after Lily. She is one of the most lovable dogs on the planet. Although it is certainly a big adjustment having a dog in the house, I see the upsides to the extra work.

Lily is a young dog, a one year old Golden Doodle. She loves to play. Sometimes, all it takes is to toss the ball for her. She even does this crazy dog thing when you make a sudden movement. But Lily also likes tug of war. The other day, I made the mistake of trying to play tug of war with her. I lost. I also hurt myself. I hope I didn't cause a new vertebral fracture. With the amount of pain killers I'm on, it's hard to tell. Not good. Bad girl!

Paying the Price for My Vanity

Vanity isn't the only reason I didn't bring my walker to lunch today, but it was a part of it. I feel like I look so much older and sicker with my walker. Then there's convenience. I would rather use the stairs and escalator than go around to the ramp and elevator. There is another reason. My back. I hurt it the other day (ignoring my limits) and didn't think I should lift the walker in and out of the trunk.

So I went to lunch downtown with my cane and had a great visit with my friends from work. After lunch, I stopped to chat with most of them in their offices. I didn't sit down often enough. That's why I should have had the walker, for the seat as much as the handholds.

Before I even got back to my car, I was wiped out and had to stop and sit down. I called my Sweetie on my way home and asked if he wanted me to pick up any groceries for dinner. Then I begged him to say no. I just couldn't face the grocery store. Accelerating and braking were painful. Sigh. By the time I got home I needed to drag myself inside. Straight for the couch.

I suppose that it made matters worse to have taken the dog for a walk, again with cane not walker, this morning. I'm not very bright, am I?

Honestly, There is a bright side to my foolishness. I won't shut myself in the house and wither. My nature is to regularly forget or ignore my limits. I just like to know where they are.

Wednesday 14 August 2013

Update: It Doesn't Get Better Than This!

I got my CT results this morning, and as the doctor said, "it doesn't get better than this." I usually like to see my medical oncologist when I get CT results, but when they are this good and don't require a treatment change, I am quite happy to see the GP that works with him. She was very pleased to see me looking so well and to give me the good news.

While there still appears to be one significant tumour in my liver, the CT report describes it as a "treated metastatic lesion." There are no other tumours in my abdomen or chest. My bone metastases are all stable. As I understand it, they will continue to show up on the CT for a long, long time. There is something on one kidney that has atrophied. I need to read more about it. This may explain why my creatinine has been elevated, though not so much that my Pamidronate treatment has to be cancelled. I did more blood tests today in advance of treatment Friday. I'll have another look at the creatinine then.

At this point, all I can really say is: whew! While I am feeling well, I always get a little nervous after each scan, afraid that this disease has tricked me and is progressing. There has been too much bad news among the breast cancer community of bloggers and tweeters (tweeters? certainly not "twits"). I feel for my friends that are coping with bad news and painful but unsuccessful treatment. But I must give thanks to God and to all of you who have sent me prayers and good thoughts. I may still be Stage IV, but this is as good as it gets.

Thursday 8 August 2013

Making Memories

There will come a time when I won't be here. It may come sooner than we think. There will come a time when I am hospitalized or bedbound. How long will it last? Today, although pain and fatigue set limits that still surprise me, my focus is on making memories for my young daughter.

Since I got sick (I was diagnosed with Stage IV breast cancer from the beginning, after a short, steep decline), we have been to Disney World, a family wedding out West, Niagara Falls, and many family get-togethers. This summer, so far, we have been to Montreal's Jazzfest, Ottawa's Bluesfest (where my daughter performed), the Diefenbunker and several other local history museums. What I haven't done is blog.

I have missed many posts, tweets, articles and the BCSM Monday night tweet chat. I have thought of my blog and you my readers often. The day she started day camp, I even started a post about what has kept me busy... That was last month. I have just been too busy to blog. I am sorry that some of you may have been worried I was unwell. Nothing could be farther from the truth. After busy days, I have crashed on the couch in front of the television most nights. Some nights I've gone to sleep at the same time as my girl.

I may not have been active in social media, instead I have been making memories. I'm not just talking about outings and photo ops. I have been spending time with my daughter doing our special things:
  • like making triple M: Mmmm Mommy's Macaroni and Cheese.
  • cuddling in bed at bedtime, not to mention afternoon family cuddles.
  • soft kisses before bed.
  • movies and our favourite Family Channel shows.
  • our secret handshake.
  • reading the 39 Clues series.
It's not all sunshine and roses. At ten, my girl is developing attitude. Mommy's suggestions aren't always welcome. But there are more hugs than shouts. There are many reminders that I love her more than she can know.... until she has a child.

I have missed my social media friends. However this summer, and every day I am blessed with, I will work to make strong memories that will have to carry my girl through the depths of future grief.


Stage IV Snapshot -- Soccer Mom


I haven't done it nearly enough this summer, but today I went out for a two kilometer walk. My daughter joined me and brought her soccer ball. We stopped at a park and kicked the ball around for a bit. I was able to kick with both legs. My right leg didn't fall off. That's good. I did need a Dilaudid and a lie-down after I got home. Still, I'm very glad we went out.

Stage IV Snapshot -- Tooth Fairy



What is life like with Stage IV breast cancer? This is the first of a series of snapshots of my life, my "new normal."

Yesterday, when my ten year old daughter's tooth fell out while we were out for lunch, I wrapped it in paper and put it in my pill box for safekeeping.

That's life with Stage IV breast cancer. It's about living.

Sunday 9 June 2013

Epidural Update

I've been meaning to update you on the caudal epidural I had on Tuesday afternoon at the Ottawa Hospital's Pain Clinic. For those of you considering the procedure, I'll tell you a bit about how it was done and I will report on success and side-effects to date.

First, The Procedure

I was met by a nurse who interviewed me about my current pain medication and pain levels. After a bit of a wait (I'm not complaining), a young doctor I hadn't met before came in. I'd seen him consulting my regular anaesthesiologist moments before. He asked me a lot of questions about the extent of my pain and nerve symptoms, explained the procedure and its risks and then asked me to sign a consent form.

Moments later, a handsome young man -- who Sweetie thought was dressed for a joust given his head to toe x-ray shields -- took me into the room where the procedure would take place. He introduced me to the female X-ray technician and asked me to mount the bed. Yes, "mount." The bed was at a 30 degree angle. I was to aim my hips at one pillow and my head at the other. Now I'm not very athletic at my best... and Grace is not my middle name. So, it is a miracle I made it on there in one try. Then things got weird. I mentioned that the caudal epidural goes into the tailbone. Well, I hadn't thought through how they would get there. You see where I'm going with this? Yes, that's when The Jouster pulled my pants down around my hips. But we've just met!

He also set me up with a blood pressure cuff and the little thingy that monitors your blood oxygen. Then the young doctor came in. They placed a drape, wiped my butt with disinfectant, which I later discovered was that bright pink stuff that is hard to scrub off. Probably the worst pain of the procedure came next, when they gave me a local anaesthetic. I didn't feel much, maybe some pressure, when the doc inserted the catheter through my tailbone. The Jouster kept me informed of each step of the procedure, and reminded me to breathe deeply to relax. I felt more pressure as the doctor injected some contrast dye to mark his location. He continuously asked the X-ray tech for another shot, sometimes asking her to switch the angle of the X-ray machine for a better view. All that to make sure that the drug was released where my frazzled nerves needed it most. Next thing I knew, the steroid was being injected and the catheter removed, neither of which I felt. I was then unhooked and moved to a wheelchair for 20 minutes of monitoring... And a snack, which I appreciated having fasted through lunch.

The After-effects

The first few steps after I left the wheelchair felt a little funny, but I'm always stiff when I get up. Plus, my bum was numb. We stopped to pick The Bean up from our neighbour on the way home and I was able to stand a while to chat. Later in the evening I was drowsy, but that isn't unusual. I couldn't really tell if the epidural was working. I was told it could take a week to get the full effect. I thought I was feeling fewer zings. That was good.

The next day, I felt fine most of the day. In the evening I had some chills. I also got wicked indigestion after eating a chocolate bar. I also felt in a peculiar mood for a short while. By the next morning, it was clear that I was reacting to the steroid as I did during chemo. Thursday, my cheeks were hot and red all day. I was told I looked like I was teething! The chills continued off and on, as did the indigestion. I felt quite low, chemo low, for a couple of hours Thursday and again Friday. For what, I ask you?

This is the problem, the zings haven't completely disappeared. I do think they are fewer and farther between, but they are not gone yet. If I had to decide now, I don't think I would repeat the procedure. But let's give it a few weeks to see what the real improvement is.

It wasn't really pain I was hoping the epidural would relieve. The medication change in early May did that. It was the lingering nerve damage, which left long enough will become permanent. I want to be able to lie down beside my girl at bedtime, I want to brush my teeth, I want to pass the potatoes without feeling a zing up or down my back. That's all I'm asking for. We will see if I get that.

Tuesday 4 June 2013

Epidural Time: Wish Me Luck!

I am fasting now, in preparation for my caudal epidural this afternoon. To avoid nausea, the Pain Clinic asked me to stop eating six hours ahead. I still have a few minutes where I can drink clear liquids, then nothing for two hours.

The epidural will go into my tailbone and be threaded up to my mid-back, where bone mets caused my vertebrae to shatter before I was even diagnosed with this cancer. There, a steroid will be released, which we hope will relieve some of the nerve pain I have been experiencing. Maybe I will be able to say goodbye to the zings that go up and down my body every time I bend a little, like doing something as risky as brushing my teeth. I get a lot of muscle pain in my mid-back too. I think the muscles are trying to firm up what the bones can't. I don't know if the epidural will help with that.

There are a few risks associated with epidurals. If the spinal cord is nicked you can end up with a headache, or dead, if I understood that right. Perhaps I shouldn't Google as much as I do. No, really there were helpful documents online about caudal epidurals. And the anaesthesiologist explained it to me at my last visit. This procedure is safer than an epidural for labour. First, they go in the tailbone, which is farther from the spinal cord, and second, the procedure is guided by X-ray to ensure they know where they are before releasing the medication.

I am not worried or nervous. I think. In fact, I think my greatest concern is that I have to skip lunch. Really, I better go now. I just have ten minutes left on clear liquids. I`d like to get a few more calories in me before I have to stop drinking. Cranberry juice? Oh that reminds me, a possible -- and temporary -- side effect is urinary incontinence. Oh great!

Wish me luck, friends!

A Milestone: 20,000 Page Views

Wow! Sometime in the last couple of days, this blog has hit a milestone I never anticipated: 20,000 page views. This is something that merits celebration, and gratitude.

I started my cancer blog after a short career as a geaneablogger (about family history) mostly as a way to keep family and friends aware of how my treatment was going. I knew many were getting the info through my mom and their parents. I'm sure some details got lost in translation. It was also difficult to tell the whole story over and over. My blog gave me a chance to write it down, once and for all.

My secondary purpose for the blog was to raise awareness of breast cancer. For a while, I gave my readers a monthly reminder to "check your boobs!" I think I felt that I might have caught my cancer earlier if I had done regular self-examinations. Then, as I became more educated about breast cancer, I realized that self-exams and mammograms aren't the be all and end all for finding cancer. That's when I dropped the words "breast cancer awareness" from the blog's title and went for the straightforward "Kate Has Cancer."

I received some criticism for the change. Is it defeatist to call myself Kate Has Cancer on the blog and Twitter? No, it's realistic. Remember, I have Stage IV breast cancer. I have had advanced cancer since they found it. Chemo, radiation and the other therapies have shrunken my tumours -- you can't even feel the one in my breast -- but many of them are still there in my liver and bones. My blood tests are fine. so I figure, if my liver can live with these tumours, then so can I!

Over time, another purpose for my blogging has emerged. I hope that others with advanced breast cancer can find, in my blog, some peace, some information and some hope. I don't focus on the latest news from clinical oncology. I talk about my treatments and the resources available to me here in Ottawa. Judging by the Blogger Stats, my most popular post, with nearly 600 page views, is perhaps my most practical one, on PICC line covers. I hope my link to a crochet pattern helped someone with cancer or even someone who wanted to help someone with cancer. I've had 800 views of my About Kate page, which I imagine could use an update. Almost 400 read my early post about how I started onto this cancer roller-coaster. Around 300 read two of my glimpses into the terror of Stage IV cancer, Reflections on Recent Deaths and Someone Took the Monster Out of the Cupboard. I have seen my readership rise to, on average, 200 page views per post. I never expected this. I may be Italian, but I don`t have that many cousins!

That brings me to the grateful part. I thank you readers for continuing to read and support me. Your comments on the blog have given me new perspectives and great support. I also thank God that I'm still here to write! Every day, every post is a blessing. I must also express my appreciation to my fellow bloggers who have directed considerable traffic my way: Ann at Breast Cancer? But Doctor....I Hate Pink!, Nancy at Nancy's Point, Jenny at Putting the GRRRRR in Grimes, and Nancy at The Dirty Pink Underbelly.

I hope to be here many more years. And I hope you stick with me. Thanks for coming.

Tuesday 21 May 2013

Working to Stay Ahead of the Pain

I think I've mentioned in the past that I am a patient at my local hospital's Pain Clinic, here in Ottawa. Because my spine fractured in several places before I even got my breast cancer diagnosis, one of the first things my medical oncologist tackled was getting my pain under control. That's where the wonderful nurse Gini comes in.

Gini's focus is on the palliative side of cancer care, relieving the pain. She saw me before and after my pelvis broke and put me on the waiting list for the new Pain Clinic. Before long, my pain had receded to the point that I no longer needed the pain pump full of Dilaudid. In fact, it was putting me to sleep as I ate breakfast! She kept me at the clinic, although my pain was manageable. I think she had a feeling...

When I saw Gini at the clinic in early February, things were so stable we decided I didn't need to come back for three months. Unfortunately, I didn't realize the effect some treatment changes would have on my pain in the interim. In late January, after a short chemo break, I was switched to daily Tamoxifen pills. My late January CT scan found a tumour on my right femoral neck that put me at risk of fracture and was subsequently treated with radiation. In March, I started a double-blind clinical trial where I was either continuing my bone-building Pamidronate treatment (but every four weeks instead of three) or I was getting Zometa, a similar drug. Put them all together and my pain, or rather my pains, increased. I was taking long-acting hydromorphone contin (a narcotic), Lyrica (for nerve pain) and Naprosyn (an anti-inflammatory) as well as hydromorphone (AKA Dilaudid) for breakthrough pain. I was taking enough to address the bone and nerve pain caused by my tumours and fractures, as well as the pain of chronic problems I have with my jaw and wrists. However, by the time I returned to the Pain Clinic in early May, I was taking several doses of Dilaudid for breakthrough pain each day. I returned to wearing my bite guard at night, as well as my wrist braces. Something had to change.

The young doctor I saw took the time to fully understand my history and the pains I was now experiencing. She consulted a senior anaesthesiologist and returned with a proposal. First, we adjusted my medication, increasing the Lyrica dose and changing the hydromorphone contin from twice to three times a day. Second, she proposed that I return at the first available appointment (early June as it turns out) to have a caudal epidural.

With the aide of a skeleton, she and the senior anaesthesiologist explained that a needle would be inserted in my tailbone and a catheter would be fished up my spine to where my compression fractures occurred and the pain relieving steroid would be released there. The procedure is safer that a traditional epidural for labour. The tailbone injection site is farther from the spinal cord and therefore less likely to cause an injury. Also the placement of the catheter will be guided by X-ray. The relief from this type of nerve block can last as long as six months, generally less than that for cancer patients.

I learned about nerve block's from one of my favourite bloggers, Scorchy at The Sarcastic Boob.  Her recent posts, "Rear View Mirror" and "Paincation Redux" tell her tale of pain and relief and explain the nerve block she gets (it's a little different from the epidural). Thank you, Scorchy for introducing me to the nerve block! It meant that when I went to the Pain Clinic I knew there were options. I didn't have to live with pain. And living is what I'm trying to do.

Someone Took the Monster Out of the Cupboard

I have a monster in the cupboard. We don't need to look at him every day, so we keep him in the cupboard. My husband and I know he's there. We take him out from time to time, but not often; he's so scary. I thought my daughter knew he was there. She didn't. She didn't know we had a monster.

The monster is the fact that breast cancer kills.

My daughter, the Bean, was eight years old when I was diagnosed with Stage IV breast cancer. The day we got the biopsy results, we told her.  It was a "Hockey Fights Cancer" game night for our Ottawa Senators. We thought that might help. Before the game, she got into her jammies and she and I sat in the rocking chair, my Sweetie on the bed. After we told her, she started to cry. Why, we asked? She thought everyone with cancer dies. I told her that wasn't true. I told her that there was no cure for my cancer, but there is treatment. I told her that our beloved family doctor has not lost a single breast cancer patient. I told her the truth. But she didn't understand it all.

Last night at bedtime, as we chatted about otherwise happy things, she compared my sister-in-law's rare cancer to breast cancer and said something along the line that no one dies from breast cancer. I winced. Without a doubt, I will never win a poker game. My face shows too much. So, I winced and said that sometimes people die of breast cancer. I didn't elaborate. I just told her the truth.

To her credit, impressive for a ten year old with a history of anxiety problems, she said, "that's enough about that" and changed the subject. Still, the monster was out of the cupboard for a moment.

My Sweetie wasn't happy about this exchange. I want to preserve her childhood, her innocence, as much as he does. But in the moment she said what she did, I was afraid that some day, when I take a turn for the worse, she would feel like I had been lying to her about my ability to fight this disease. It is ugly, but it is the truth: breast cancer will kill me. I don't want her to confuse my attitude with invincibility.

I am quite happy to put the monster back in the cupboard and leave him there as long as possible. I don't like the monster. Not one bit. But she is my girl, and I had to tell her the truth.

Can I ask, moms with mets and tweens, how much do your children understand about Stage IV cancer. Do you keep your monster in the cupboard or on a shelf? How do you balance honesty and innocence?

The Ottawa Regional Cancer Foundation runs the Maplesoft Centre here in town, not far from the hospital where I get my care. Maplesoft offers the Wonders and Worries series for children aged five to twelve to help them cope with a cancer diagnosis to their parent or grandparent. We've told the Bean about the program, but she says she isn't interested. If your child needs help, in the Ottawa area, please contact the Maplesoft Centre at 613.247.3527 or info@ottawacancer.ca.

You may also want to read the new book, "My Parent Has Cancer and It Really Sucks" by father and daughter team Marc and Maya Silver. I was fortunate enough to win this book from Nancy Stordahl at Nancy's Point. The book offers a terrific compilation of practical advice, much of it from teens who have lived with their parent's cancer diagnosis or even death. The book is written for teens. The Bean isn't ready for it yet, in terms of maturity rather than reading ability. Nevertheless, the book has given me an idea or two to open up the conversation about cancer. After my diagnosis, she had so many questions for me about cancer and the treatment I was getting. She, like her parents, got the hang of it after about six months. Now she doesn't really want to talk about it. I don't know if that's good or bad. I certainly don't want to make her life "all cancer, all the time." But neither do I want her to live completely in denial. I'm a big fan of denial, don't get me wrong, but it's a matter of proportion. That's why the monster lives in the cupboard, but we don't pretend he's moved out.

Wednesday 24 April 2013

Call Me Mabel, Stable Mabel

This morning I saw my oncologist to get the results of the CT scan I had last Friday. Everything is stable! I will admit that I really liked the CTs I had during chemo that showed my liver tumours shrinking dramatically. OK, I wish I was NED (no evidence of disease). But I am happy to be sable, Stable Mabel.

This was my first CT scan since I began Tamoxifen treatment. I had thought of this drug only for its value in preventing the recurrence of breast cancer; I hadn't realized it was used for metastatic disease as well. I thought I was going to have to do chemo for the rest of my life. [Yes, there is SO much I don't know!] My bone marrow is glad for the chemo break, not that Tamoxifen is completely benign. I have had increased joint pain, significant nausea and, most recently, hot flashes. It's almost as bad as my chemo, Taxol. But it isn't as toxic. Knowing that my doctor has so many drugs to use against my cancer (triple positive ductal breast cancer) is comforting. In fact, the doctor mentioned that it appears that cancer cells are forgetful. They lose their resistance to particular chemo drugs after about a year. That allows the oncologists to retry a drug that stopped working. It gives me hope that I will be around for a while.

I swear, I cry almost as much after good news as bad. My Sweetheart and I admitted some of our fears to my oncologist. My doctor is, and always has been very optimistic about his ability to treat my cancer as a chronic condition, rather than a life-threatening one. The truth is that right now my cancer is not threatening my life. i really should relax a little. Both the doc and my Sweetie would like it if I stayed off the Internet and forgot about median survival rates. They have a good point, but it would be hard. I feel a great deal of comfort and support from the breast cancer blogging community. Plus, I want to use my blog to keep my loved ones up to date and to, I hope, be of comfort and support to others.

[My title was inspired by Jen at Learning to Live Lengendary and her post "Missing Mabel.")

Thursday 4 April 2013

Reflections on Recent Deaths

I was shocked today to learn that Roger Ebert had passed away only days after announcing he was taking a "leave of presence" due to the return of his cancer. He had so many plans for this leave and now he is gone. Just weeks ago, Donna Peach, a breast cancer blogger, passed away after what seemed to be a recurrence of shingles. Through the Twitter feed I was informed today of another passing, this time of the mother of young children.

Given my condition, I can't help but be touched by these deaths. There but for the grace of God go I. Reflections fill my head and spill out my fingertips to my blog. I need to write these things publicly. I need to be held to account. Because I don't want to slip away before I do the things I need to do.

WARNING: this post is not for the faint of heart. Please stop now if my honesty may disturb you.

First, let me say how grateful I am to have lived eighteen months since my diagnosis of Stage IV breast cancer. You don't want to know what the median survival is. Google it if you have to, but you don't want to know. My doctor talks of treating me for decades and decades. I hope so. I know he can't guarantee me that much time.

Whatever time I have, I want to write more, sit less. I don't want this sore neck that comes from too much time sprawled on the couch. Now that spring is approaching, or at least the snowbanks are receding, I want to drag my walker outside and walk, damnit! I want to smell the fresh air and feel the sun. It is time to listen to the birds call my name. I'm not confident that I can walk 5km like I did last fall. My hip appears to be healing. Walking helps it heal. What I need to do is clear.

I also want to use up my craft stash. I can't bear the thought of my Sweetheart having to sort through it without me. It would be best that he not know how many things I plan to make a purse out of, on top of all the other purses I have. There is so much wool. So many beads. I want to make a rosary for my niece before her baptism. I'm proud to be her godmother!

Organizing my paper and electronic genealogy files is another priority. Genealogy isn't a project you finish. Nevertheless, there is so much I should do, like improving my source citations and adding photos and then posting my family tree to the public. I am late in responding to a couple of people eager to share research. Cancerland has been a busy place the last few months. So many appointments. Gee, why don't I make myself an appointment to visit the National Archives again with Sweetie? I should schedule time to tackle my hobbies.

And then there is the pile of stuff at my office. I've been trying to get back there since January to sort through my effects and my working papers. I appreciate my coworkers packing up my office to clear it for my replacement, but there's so much for me yet to do. I've been thinking of holding a garage sale for the candy dishes, mugs, vases and toys I had at the office. There's a way to raise money for "the cure."

I also want to prepare for, shall we say, the worst case scenario. I need to write messages for the Bean in case I'm not here for her the day her heart is broken or she runs up her credit card. So many things I have to say. She calls them Mommy's lectures now. She is turning ten. Another few years and she won't hear a word I say. But one day she will regret that. Do I write or do I videotape my messages to her? Maybe both. It won't be a small or easy task.

There are practical preparations too. I take care of the family finances. We have been meeting with our financial advisor and most of our retirement and education savings, insurance and mortgage are with him. I think it is time to get rid of my bank account in favour of joint accounts with my Sweetheart, so he has easier access to all our assets when I am incapacitated or gone.

I have been reading books about healing, meditation and happiness. I would like to practice meditation. In fact, my physiotherapy routine is primarily breathing and relaxation. I can believe that meditation may help shrink my tumours, shall we say by helping my medical treatment to be as effective as possible. At the very least, meditation would improve my quality of life. Hmm, quality and perhaps quantity of life?

I don't know if you can understand this if you don't have a terminal illness, but one ache, one bad day can be terrifying. The bad days can snowball quickly, as they did for Donna Peach and Roger Ebert. I feel very vulnerable, naked and unarmed. Those who knew me before my diagnosis know I'm a planner. Very deadline oriented. When it came to my work, I could do miracles with the right team. I told my boss today I should have saved myself a miracle. We will see. Maybe I did.

The thing is that we don't know. Unlike my work projects, I don't know what my deadline is. Don't know how much time I have left to clean my closets, raise my girl and teach Sweetie how to pay the bills online. Truth be told, you don't know how much time you have either. You probably don't want to think about it though. I can't avoid it.

And that brings me to the thought I want to leave you with: peace. I was raised a Roman Catholic, though I'm not a practicing one. Pope Francis intrigues me and so I've been following several Vatican Twitter feeds. His words today about the "joyful wonder" of being a Christian really touched me. In my opinion this peace can be sought and received from whatever you believe is a Supreme Being or life force. Whatever your faith, please consider these words. May you find peace in them, as I do:

"Of course we cannot live forever in [a state of] wonder. No, we really cannot. But it is the beginning. Then, this astonishment leaves an impression in the soul and spiritual consolation. It is the consolation of those who have encountered Jesus Christ”.

"First wonder, then spiritual consolation and finally, the last step: peace. Even in the most painful tests, a Christian never loses the peace and presence of Jesus. With a little 'courage' we can pray: 'Lord, grant me this grace which is the hallmark of our encounter with you: spiritual consolation and peace'. A peace that we cannot lose because it is ours, it is the Lord's true peace that cannot be bought or sold. It is a gift from God. This is why we ask for the grace of spiritual consolation and peace of mind, that starts with this joyful wonder of our encounter with Jesus Christ. So be it. "

Sunday 17 February 2013

An Ordinary Day

There was nothing but leftovers in the fridge, so we ordered the "Canadian" pizza (with pepperoni, bacon and mushrooms). We ate in front of the TV as we usually do on a pizza night. Plus, the hockey game was starting: Ottawa vs. Toronto. I had one eye on the iPad through the game, playing Hay Day and reading the Twitter feed. Unfortunately, the Sens lost. We hate to lose to Toronto, but so many of our top players are out with injuries that we really didn't expect much scoring. After the loss, we sent the Bean to bed. I should have gone up at the same time; instead, I promptly fell asleep while we watched "Monk" on DVD.

In the morning, I slept in. And then slept some more. The Bean and I had breakfast together and watched the Family Channel while my Sweetie was at the gym. Next thing, it was time to shower, while Sweetie sorted the dirty clothes. Sunday is laundry day at our house. After lunch, the Bean and I went to Loblaws for groceries. Tomorrow is Family Day and the grocery stores will be closed. Sweetie is making carrot ginger soup tonight. Mmm... I also got all we need to make Baked Pasta tomorrow. Despite Family Day, tomorrow night the Bean has her first tryout for competitive level soccer. We learned last summer that pasta and sauce is the fuel she needs to play her best soccer.

So I'm sitting on the couch with the iPad watching "Income Property" and thinking about my day. It's an ordinary day really. It all depends how you look at it. But this can be a day with Stage IV breast cancer.

Thursday 7 February 2013

We Can't Not Treat It

Yesterday, we saw Dr. M, my radiation oncologist. The first time we saw her, over a year ago, we were a little bowled over by her approach. Unlike most doctors we see, she took us on a journey through her thought process. She did the same thing yesterday, and I like it. I came out feeling like I understood exactly how and when I would be treated, why I would be treated and even what the risks of the treatment would be. Really, that shouldn't be too much to ask.

Having looked at the CT and X-rays as well as the orthopedist's report, Dr. M was clear that my hip needed to be treated. The problematic tumour is in the femoral neck, the thin part of the femur leading to the ball that fits into the hip joint. It is a vulnerable spot. I should get a call soon to go in for marking in the next 10 to 14 days. The marking (tattooing, actually) is done before the radiation to allow the beam to get the right spot each time. After that, I will get five sessions of radiation to the femoral neck as well as up towards the ball and down a bit into the femur. She informed me that after the radiation, the blood vessels in the area would dilate, which may put me at increased risk of fracture for a period of time. While this risk is known, there isn't sufficient research to determine how long the increased risk would last. Given my health (good compared to many cancer patients) and mobility, she estimated that within a month, my hip should be healed. We also talked about the possibility the orthopedist would recommend surgery, or a fracture would require surgery. She assured me that the radiation and resulting dilation would not have an impact on any subsequent surgery.

As you may know, typically with breast cancer, patients receive 20 to 30 sessions of radiation after surgery and chemo. Bone metastases are treated very differently. Dr. M does five to ten sessions on bone mets. As I understand it, they limit the number of sessions because the radiation can seriously affect patient's bone marrow.  This isn't an issue when the breast is being radiated.

I am preparing myself for two side effects from the radiation. First, I am likely to experience some increase in bone pain in the days after the radiation sessions. That shouldn't last long. I may also get a "sunburn" from the radiation. I still have a darkened, dry area on my back from the radiation I had on my spine. This morning I started applying Dream Cream from Lush to my hip. Perhaps if I keep the area moisturized, it won't burn.

In the meantime, I'm to continue to be careful of the ice. And no jumping off buildings, Dr. M said.  That's a shame. Tomorrow is Superhero Day at the Bean's school. I won't be able to join in.

Thank You For Being There With Me

Over the last couple of days, I have read a couple of blog posts about Stage IV cancer patients feeling abandoned by their friends, colleagues and even family who "can't handle" their cancer diagnosis. One of my favourite bloggers, Ann at "Breast Cancer? But Doctor... I Hate Pink" shares her very personal story in her post Abandonment is not a form of love. I've read of women with Stage IV cancer even feeling snubbed within the breast cancer community, like we are the wicked stepsister in a pink fairy tale. If you have come to this blog looking for guidance on that sort of situation, I can't really help you, other than to recommend you click on the link to Ann's post.

I feel compelled to write about the level of support I have received because it has truly been incredible, unexpected... even overwhelming.  Since I got sick, you have all been there for me:
  • the Bertolo cousins who phone me to see how I'm doing;
  • the teachers that filled our freezer to overflowing... twice;
  • the neighbour who loaned my her wig;
  • the second cousin I met online who emails to check on me if I haven't blogged in a couple of weeks;
  • my boss and coworker who have tried to crochet me back to health;
  • the coworkers that collected money to buy me a tablet to keep me connected at home;
  • my high school buddies that came to Ottawa for my birthday;
  • everyone who donated money to the Run for the Cure on behalf of me, Sweetie and the Bean;
  • the neighbour who looks after the Bean when my chemo and doctors appointments run late;
  • my brothers, who check up on me even though life has thrown then a lot of shit this past year;
  • my aunties and uncles who call, email me about cancer-fighting foods, and have masses said for me;
  • old friends sending me messages of support on Facebook;
  • the Bean's friends' moms who have invited her for playdates and offerred to take her any time we're in a bind;
  • neighbours and coworkers who gave us suppers and sweets last year when we were overwhelmed with all the appointments;
  • friends that visited me in the hospital;
  • friends that came to our house to make us pizza;
  • friends that sat with me during chemo, even though the Benedryl threatened to put me to sleep;
  • everyone who put up with incoherent emails and voicemails back when I was adjusting to the painkillers;
  • my sweet girl, who cut her hair for cancer wigs, and makes her own breakfast;
  • my Sweetheart, who does everything for me.
I am afraid that I am leaving someone out! Believe me, you're in my prayers. I am so grateful for the support I have received from everyone I know. I am carrying a heavy load with this diagnosis, but you have helped me every step of the way.

Thank you.

Sometimes I Lie

Little white lies. I feel I have to tell them. Why? Mostly for the sake of the Bean, my little girl.

Frequently in the neighbourhood, at school, or this week at the dentist, people ask me why I am using a cane. I explain that I was diagnosed with breast cancer and it has spread to my liver and bones. God bless them, they usually say something like "but the cancer is all gone now?" Uh, well, no. "But you'll be alright, won't you?" That's when I tell a modified version of the truth. I say that the doctors treat it as a chronic disease, like diabetes. If I mention that there is no cure, I do it in my sweetest, most hopeful voice. Why? BECAUSE MY DAUGHTER IS STANDING RIGHT THERE!

Yes, the doctor really is treating it like a chronic disease... because there is no cure.  Trust me, it's not like diabetes. With all due respect to my dear friends with diabetes, it's not the same. They wouldn't want to trade diagnoses with me.

In front of the Bean, do you think I am going to mention that breast cancer is likely to kill me before she grows up? Come on, nobody wants to hear that. Especially me.

I really wish there was meaningful awareness of breast cancer. I wish people understood how common it is, that there is no cure. Damn Lance Armstrong and the Pink Police for convincing everyone that cancer is easy to fight. It isn't. It is an insidious demon attacking me daily. I fight it with handfuls of pills, IVs and radiation. I fight it with every stubborn breath I take. But it isn't easy. Unless you ask me in front of my girl, in which case I'll say, "I am fine, really. The doctors have it under control."

Flashback to the Biopsy Table

"But my girl's only eight," I cried! The radiologist and technician stopped making their "no need to worry" noises as the image on their ultrasound screen became clear.

I knew, before the needle biopsy. The CT had already shown apparent metastacized tumours in my liver and bones. We could feel the breast tumour. It wasn't pea sized. It was huge. I knew what this meant.

"But my girl's only eight!"

Can you hear the terror in my voice? I can hear the paper on the biopsy table, under me and feel the cotton robe against my cold, frightened skin. I can see the dim light coming in from that north-facing window. And I can feel the terror. Not that I might lose my life, that's not the issue. That my daughter's health and happiness would forever be tainted by my diagnosis, by my prognosis.

I will need a miracle to survive this disease. But every morning that I can face my dear girl with a smile is a miracle for which I thank God.

Friday 1 February 2013

Mackenzie King, My Orthopedic Surgeon

I still have a lot to learn about the medical system. For example, when I was told I would be seen by an orthopedist, I didn't realize he was a surgeon. Interesting guy. He introduced himself by way of saying that he loves operating. It's his thing. But... His mortgage is paid off. Bottom line of yesterday's appointment was, to paraphrase Mackenzie King, "surgery if necessary, but not necessarily surgery."

He explained that the CT wasn't sufficient to assess the risk I will fracture my leg. He sent me straight over for plain old x-rays of my pelvis and both femurs (thighbones). He will see me again in four weeks. In the meantime, I will see my radiation oncologist, and now she will have the benefit of the X-rays to decide whether to radiate. And, if my hip pain (which we all agreed could be psychosomatic) spikes, I'm to get on crutches and get to the hospital. Unlikely, I expect.

Monday 28 January 2013

"Patient at Risk for Pathologic Fracture"

There it is. The last sentence on the CT scan report. The sentence the doctor didn't mention. "A lesion in the right femoral neck places the patient at risk for pathologic fracture at this location."

Google explained to me that the femoral neck is the top of the thigh one, just before the ball (head) that fits into the pelvis at my hip. It is a pretty vulnerable spot, particularly in Ottawa during such a cold, icy winter.

I usually get up with my daughter and walk her to the school bus stop. The last few weeks I have become increasingly nervous about out our walk. The stop is only a few houses away. But there is so much ice on the road, and a bit on our front walk, to be honest. It is time to hand this job over to Geoff for a while. I hate to do that. He has taken on so much of the household tasks since I got sick. I like to let him sleep in a bit in the morning. But the risk is too great.

If I were to slip, the chance of the femoral neck snapping seems to be high. Surgery would be required to fix it, whether it is pinning the bone together or replacing it with a prosthesis (as in hip replacement surgery). I expect it would be more disabling than my previous pelvic fracture. Since reading the CT report, I've been feeling some pain deep in my hip. The Tamoxifen I'm on can cause bone pain. Or maybe it is in my head. Maybe I'm making a mountain out of a molehill.

On Thursday, I see an orthopedist, and then next week, my radiation oncologist. They will be able to tell me more. Maybe the risk isn't as great as I fear. Perhaps Dr. M could use radiation to strengthen my bone. Having been off chemo since November, my bone marrow should be able to withstand the radiation. We'll see what they say.

But in the meantime, I think I best stay off the road.

Sunday 20 January 2013

A Very New Treatment Approach

This past week, I got the results of my latest CT scan. The tumours were stable, which I guess is good considering I hadn't had a lot of chemo through the fall. I had expected to restart chemo on Friday, but as we talked, the doctor decided to present a different option.

Since my tumours were stable and I'd been on chemo (Taxol) for over a year, she felt it was time for a break. She proposed continuing Heceptin and Pamidronate but stopping Taxol and starting Tamoxifen. The break would allow my bone marrow heal from the ravages of chemo and bone mets. My whole body would get a break from the toxicity of chemo, though I had tolerated it better than I had ever expected.

I started taking the Tamoxifen tablet with supper. So far, so good. Possible side-effected include hot flashes. That wouldn't be terrible, considering I have been pretty chilly since treatment began. But so far, nothing.

There are two matters yet to be confirmed about my new treatment plan. First, I don't know how often I will be going for the Herceptin and Pamidronate infusions. We thought the doctor said once every six or eight weeks, but on Friday we got much more frequent treatment dates. My treatment nurse reminded me that usually Herceptin is given ever three or four weeks. I'll call my designated nurse Monday to confirm my treatment timing. Second, I've been invited to join the Odyssey trial. It is a double blind trial in which I would either get Pamidronate or a similar drug called Zometa. The trial would require additional tests as well as interviews. I usually jump at a chance to participate in a trial, but I'm not sure I want to commit to the extra time when I'm supposed to be on a "break".

The doctor said I should look at this change as something to celebrate. Doctors like stability. I like shrinkage. I guess I expected the tumours to continue shrinking -- I was feeling really positive about the CT scan. I guess a year on chemo is enough. Don't be fooled, my friends, there's still a lot of chemo in my future.

For now, I'll be counting on Tamoxifen and Herceptin to keep the tumours from growing.

Tuesday 8 January 2013

Time for Testing, Again

Forgive me for not writing sooner. I've spent the last two months focused on family and celebrating Christmas.

I've had a break from chemo too. My last two appointments were cancelled in advance of my CT scan, which is tomorrow. It is an unpleasant test. I have to slowly drink 40 oz. of liquid that tastes like dirty pool water. At least, I am able to use a flavouring powered or syrup to mask the vileness. It helps, if you like lemon flavoured pool water.

I would appreciate your thoughts Wednesday morning as I undergo the CT scan. I will have the results next week, followed by chemo on the 18th.

I hope you enjoyed the holidays, as I did. I am very glad to be able to wish you all a happy new year!