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I have been told that I may have a few days to go. I would like to spend that time with my family. If you are already booked to visit, please still come. But no new visits please. My apologies those I was unable to say goodbye to, know that I love you all.

ps: I have enjoyed my life and my time with you.

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Hard News

Yesterday we received some hard news.  None of the surgical options are feasible, and so I have about a month to live.  sorry about the method of delivery of this message but I wanted you to receive it asap.

 

My next post will be to let you know if/when I get home.  You can visit me at home the next day after that post.  You can still come to hospital in the meantime.

Come prepared to talk about your life.  I won’t want to focus on the dull terribleness of what’s going on with me, but on what’s fun and cool with you.

Sorry this message is so short but its what I can do now.

xoxo Mary

ps it may be hard for me to reply to comments on this site for awhile due to no computer, but I can read them.

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New Hospital Admission

On Friday, I again experienced high high pain.  This time I yelled out loud when shifting from standing to sitting and vice versa.  Regis called the hospital to let the docs know I could not come in for my appointments.  My medical oncologist called back to tell us to come into emergency by ambulance.  We hung out in emergency from about 11 am until 8.  I was admitted to hospital and got a bed at around 2:30 am.

On Friday they xrayed the back part of my hip and found no fracture.  I was to stay in hospital for pain management.  Saturday morning I saw the medical onc in charge of the oncology unit for the week.  I let him know I was also experiencing pain in the front in my femur.  He ordered xrays and I went down for another set that afternoon.

This morning I saw the med onc and then an orthopedic resident.  They let me know that there are pathological fractures right at the top above my hip replacement, in the pelvic and acetabulum bones. They are not sure if there is anything that they can do about them other than pain management.  This might move me into bed bound and bed pan territory.  Tomorrow the orthos will confer with the oncology orthopedic specialists to find out.  Will keep you posted.  They are keeping me very comfortable with pain medication in the meantime.  It looks like I will be in hospital for awhile in case anyone would like a visit.

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A Day in the Life

I wanted to just write a post that outlines a non-hospital day.  Regis added up, and not counting weekends, we were at the Hospital every day but four in October.  So far, touch wood, November has been much calmer.

So today I woke at 4:30, having been able to get to sleep sometime after 2:30.  I took a sleeping pill and breakthrough painkiller pills, and went back to sleep.

9 am I wake up.  We’re staying at Soho long stay hotel/suites while our building elevator is replaced.  We’ve been here since October 2, and may be able to go home late next week or the following week.  Our return depends on the elevator replacement and also to a bathroom modification that has to happen first.  More on that later.

My home nurse comes at 10.  She was quite concerned Monday because I’d been in too much pain to get out of bed.  She’s relieved to hear that things have gotten a bit better; and that there are doctors’ appointments with my radiation and medical oncologist Friday that the hospital called to book on Tuesday.

I have half a muffin, tea, and two handfuls of pills having breakfast with Regis.  I have about a half hour wait for my PSW, who arrives at 11.  My PSW is a terrific woman originally from Rwanda via Belgium and Paris.  She was lucky to have left Rwanda before the genocide.  I am fortunate to have her help, four days per week, to get into the shower and dress.

At 12, I’m done with my PSW.  An Occupational Therapist is coming at 1 for an initial assessment.  I had asked to be assessed and then have the OT look over our apartment on the next appointment, to see whether/what needs to be modified to accommodate my more limited mobility.  I can only walk about a hallway’s length now, due to pain and weakness in my leg and hip.  I use either my walker or a set of two canes with sturdy four-prong bottoms.  Luckily my wide-fitting shoes came yesterday (to manage leg/foot swelling), I put those on and check and write emails until the OT shows.

The OT is a very friendly woman from a different care agency than my nurse and PSW.  She watches me walk with my walker.  Then I receive some surprising news; she was asked to come to assess me for a wheelchair by my palliative care doctor.  We do the assessment, and she measures me for the wheelchair.  She gives me some good recommendations for other assistive devices that might help out, and ways to modify our bathroom at home.  We make another appointment, checking in with Regis via text, for her to meet next week with Regis at our apartment to assess and make recommendations.

I let the OT also know about our bathroom modifications.   Regis has found someone who can remove our tub and install a ramped shower, which I’ll be able to still get into and out of with assistance.  She has some other good ideas about bathroom modifications that we can ask the contractors about.  The contractor told Regis they can do the job next Monday, Tuesday or Wednesday.

I’m a bit astonished at being fitted for a wheelchair.  It seems like my loss of mobility has come on very quickly.  It’s a big thing to adjust to.

My work friend,  Sue, comes over about 3 for a visit.  It’s lovely to see her, great to catch up with her and hear about her family.  We also have a chance talk about all the workplace news and changes.  Sue and I are the same age and remember all the same old shows, books, and songs.  She leaves to catch her bus home.   About once every two weeks I have a visit from a friend.  It’s almost always the high point of my day.

Regis soon arrives back, with a dinner from the freezer at home.  We have dinner, he goes to CKCU to do his show, Lafayette and I stay home and listen.  I write this post.  Now it’s 9:30, we’ll probably get ready for bed and read a bit.  Appointments tomorrow with rad onc and med onc to be ready/alert for. Today was busy but a good day, pain and health-wise.

 

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Just a bunch more things to let you know!

I’ve not posted since October 13 and there’s a bunch more stuff that’s happened in the meantime to let you know about.

Swelling:  I’ve had problems with swelling in my abdomen and pelvis that have given me upset stomach and caused some sleep problems.  After a visit to the Patient Support stretcher bay area for hydration and nausea, and one to Emerge at the recommendation of the Palliative support nurse, a CT scan has shown no new lesions in my abdomen and just the same lesions in my liver and inflamed lymph nodes in my abdomen.  So I have some unexplained swelling and my clothes don’t fit (thank goodness for Lululemon pants!)

More swelling:  I’ve had huge, elephantine type swelling in my feet and lower legs.  Again, a call to the nurse and triage visit to stretcher bay yesterday did not resolve this.  None of my shoes fit.  Thank goodness for Regis’ wide feet loafer/slippers, which he’s loaned me for the duration.

Fluid in lungs:  have not been able to lie down to sleep since last Friday due to more coughing and trouble breathing.  In stretcher bay yesterday, a chest XRay and CT scan which ultimately showed more pleural fluid in right lung.  They are referring me to a lung doctor who will insert a drain through the chest wall and allow the fluid to drain (hopefully allowing me to breathe better, and sleep more than 1.5 hours per night).  Sitting up to sleep doesn’t really work, restoratively speaking.

SBRT appointment:  I’m now scheduled to go under the brain laser on Monday October 31 beginning at 11.  The treatment will take a little over an hour.  Any and all peaceful feelings you can send me to help me keep still for this tumour-zapping will be much appreciated!  Looking forward to getting this done and getting back onto my Sutent treatment medication, which will hopefully eliminate some of this other disease-related unpleasantness.

 

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SBRT and symptom management

Last Friday we saw a symptom management specialist to get the pain and nausea and whatnot under control.  I’ve been following his medication guidelines since then and feeling somewhat better – less pain, still sometimes diarrhea/vomiting, interspersed with not being able to go at all.  Waiting for follow up appointment to hopefully make things better.   Able to walk a couple of blocks yesterday which was a big deal.

Meanwhile, saw a new radiation oncology specialist Wednesday.  Tuesday my oncologist called to tell us that the CT of my head 1.5 weeks ago showed a tumour/lesion in the left side of the brain.  It’s about 1 cm.  I have an MRI Friday evening to see if there are any that the CT scan did not catch.  Wednesday the rad onc recommended SBRT (cyber knife), which will zap the brain lesion as SBRT did in 2014 Fall for my lung lesions.  I was then measured for a mask/form to wear while undergoing this session – I understand there is one session of high dose radiation – and had another planning CT scan with the form/mask on to help with aim.  I don’t know how long the session lasts, but understand it is about an hour treatment.     There are various side effects, short and long term (hello more nausea and fatigue), but overall this is a recommended treatment.  We should find out next week when it is scheduled.

Due to this, I am back on a steroid due to swelling in the brain around the tumour.  This may be partly why I’ve been up since 2:00 am.  Also, worrying to me, I have to be again off Sutent for risk of bleed of the lesion, until sometime after the SBRT session, having only been able to resume Sutent for about a week since last July.  Of course this makes me concerned about more growth in the hip bone, liver, lungs lesions and in the cancer in the bone marrow.

Luckily, things seem to be moving very quickly with this SBRT planning, so hopefully I’ll be through the radiation session(s) and back on systemic treatment pretty soon.

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A Buncha Stuff

So we’ve landed, though not completely moved, into our two month residence while our elevator is replaced in our building.  It’s a pretty nice space, small but with lots of light.  There bed is a lot harder to get into; but the shower, easier.   We’ve maybe already had our first noise complaint ever (someone on the floor closing door noisily), which if you know us, is pretty funny).

Over the last few weeks, I’ve gone through hip bone radiation.  There were lots of pain flares, with vomiting etc associated.  I’ve been diagnosed with bone narrow cancer.
I had a CT head scan (no result yet) for head tumours because of my delays and difficulties writing and typing.

Tomorrow I am allowed back on the Sutent, at least in the interim, to see if the platelets stay stable.

 

That’s things in a nutshell.  I’ll do my best to keep you posted, however brief the typing and writing.  xoxo m

 

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