A spot of bother

I, Ian, am writing this blog post on behalf of Sheryl as she is having difficulty typing.  It has been a rough few weeks.

The lymphedema in Sheryl’s right arm and shoulder has continued to get worse.  We have been to the Saanich Peninsula ER twice for the pain that her swollen arm has caused.  The lymphatic fluid has broken through the skin on her arm.

She has been pulled off the Capecitabine by her oncologist.  We had to go to emergency at Royal Jubilee Hospital at 1:30 am on May  8th.  She was prescribed hydromorphone pills and hydromorphone injections to break through when the pain of her arm became too bad.  Sheryl’s oncologist advised that the she needed to come off the Capecitabine as it was no longer working. Her right lung has also been filling with lymphatic fluid. Sheryl, always the fighter, asked if there were any other possible treatment options that could be attempted.  There was one but the Oncologist did not recommend it.  The treatment would require Sheryl to attend a private injection clinic for one drug and the Cancer Agency for another. She did want to attempt this but needed to stay out of hospital in order to qualify.

At home Sheryl had lost a lot of mobility.  Her left arm needed to be dressed and cleaned at least twice a day.  A home care nurse was visiting every two days and Sheryl’s mother, Joyce, was a great help during this time helping to change the wound dressing and care for Sheryl.

On May 16th we had an appointment at the pain and symptom clinic at the cancer agency.  It was a busy day for Sheryl as we had to give her a pain injection then clean the wound on her arm, get dressed and in the vehicle down to the Cancer Agency.  Sheryl has been too weak to walk any distance for the last few days prior so we got a wheelchair to go into the Cancer Agency.  Once in the room Sheryl felt nauseous and then had great difficulty breathing and was hyperventilating.  I hit the emergency button and the fantastic staff at the Cancer Agency jumped into action to get Sheryl Oxygen and medications to stabilize her. She was then transferred to the ER at Royal Jubilee in a short 1 block ambulance ride.

On Tuesday Sheryl was transferred to palliative care a the hospice.  They are managing her pain and have adjusted the dosages to help Sheryl be able to be alert and present. She would love to see all her friends and family that have always been so important to her throughout her life.

Please wish her the best while Sheryl goes through this difficult time.

Recent stuff in cancer research

I have seen a few different things in the news and in support groups about cancer research recently.  There were 3 particular studies that have stood out for me.  Right now I can only remember 2 of them but hopefully before I finish this post I will remember what the third one was about.

The big thing in cancer research in Canada in the past week was the show on CBC called Cracking Cancer (sorry, the only link I could find does not allow the show to be viewed outside of Canada).  It was hosted by David Suzuki and it followed several patients that Continue reading

Christmas Fun 2015

Last year for Christmas I spent a lot of time running around to medical appointments and getting biopsies done. This year has been a little different.

Two days after my fantastic birthday party I had my second cycle of chemo. Now that I know to stay on my low dose steroid, the primary side effect was joint pain and it was easy to control with Tylenol.
On Monday of  the second week of December I was in for abdominal and head CT scans to Continue reading

Docetaxol and turning 40

Chemo day was Monday October 19th, also election day in Canada (I am happy to say my riding, Saanich-Gulf Islands, had the highest turn out of the entire country as we re-elected Elizabeth May of the Green Party). Ian and I had planned ahead by participating in early voting.  We were lucky and only had to wait about 15 minutes to get our ballots.
Back to the 19th…..I had asked my oncologist the previous week about approximately how long my infusions would take so Ian would know when to pick me up. I’ve spent enough time on the chemo ward I’m just as happy being there by myself so I can spend more time Continue reading

Knockin’ on chemo’s door

My oncologist was on vacation for a few weeks so for my regular 9 week appointment I saw a stand-in.  He had a unique bedside manner for a physician as he was not very good at eye contact. But he was very thorough.
I was phoned the day before my appointment and told that my appointment was being bumped a half-hour later. The reason for the delay was that the stand-in oncologist was presenting my case to the tumour group. Continue reading

A little neurology goes a long way

I saw a neurologist last week about my tongue thing.  He was fantastic and I am very happy to have him as the newest member of my healthcare team.
The good news is that I do not have MS, ALS, or epilepsy.
Due to some very old scar tissue in my brain my neurologist suspects that my tongue issue may actually be congenital and for some unknown reason has decided to start showing symptoms now. It is possible that for another unknown reason the radiation I had to my skull is what kicked started the symptoms.
My neurologist would not be surprised if the symptoms disappear as suddenly as they appeared. I am going to hope for that.
At this point it doesn’t feel like the symptoms are appearing any more frequently which is good. If the symptoms do get worse and start impeding my speech more my neurologist has offered to send me to a speech pathologist if I deem it necessary.
Early on Saturday……. Yes, Saturday…….morning I had to go to Victoria General for my first infusion of Pamidronate. This is the new bone drug I am switching to, replacing Clodronate. I was getting really tired of the timing of Clodronate since I had to take it first thing in the morning then wait an hour to eat.
Turns out one of the great things about Pamidronate is that in the future I will have to go in to get my IV inserted and the drug attached but then I can go home. The drug is infused using a portable infusion pump bottle and not a regular infusion pump.
This is what the bottle basically looks like:
The balloon inside is filled with saline and the drug is added. Then the balloon slowly collapses and the drug solution is infused. Pretty cool.
I have to remove my IV after the drug finishes running, but that is fine if it saves me from 4 hours of hanging about in a hospital.
After I got home from that adventure I felt okay. For Valentine’s Day dinner it was cheese fondue and pain au chocolat bread pudding. Very tasty.
By the time I went to bed I was definitely feeling off. Heart burn, achiness, and general grossness. I still had some of the peppermint spirits I used during chemo for upset tummy and it worked its usual miracle.
Sunday morning I woke up and I believe I felt sort like a person would about a week after being hit by a bus. Every part of my body ached except for my left elbow and I was so tired. I’m not quite sure why my elbow got to escape the joy.
After some Tylenol and several hours of not moving on the couch the ache started to fade. By Sunday evening it was pretty much gone. Monday morning I felt normal again.
Now I know, the day after Pamidronate will be a write off. Over time I am hoping the side effects will decrease.
Ok, back to waiting for surgery dates…….

Christmas Biopsy #2

Let’s see…..the last week has been a little action packed.
Last Tuesday I was called by a nurse at my new breast surgeon’s office. My surgeon was scheduled for surgery on Friday at the Royal Jubilee Hospital so I was booked at a clinic for 07:45 to get the little bump biopsied. Uhhhhhhh………07:45? I haven’t been out of bed before 10 am in about 2 months. It is one of those suck it up, buttercup, and get it done moments. At least I am getting the biopsy done really quickly.
Later on Tuesday my wonderful bestie, Keetah, arrived for a visit with her mum, a couple of super cute pooches, and her long lost brother. It was a couple days filled with lots of food and drink and laughs. Orchid was awfully glad when they left. Miss Satori, the puggle, really wanted to practice her cat chasing skills much to the amusement of the humans………our entire house is hardwood. There was a lot of running with no forward movement from the puggle.
Thursday afternoon I got a call from my oncologist. She had received the results of my biopsy (!!!!!). That was unexpected. The biopsy showed that the enlarged node was due to breast cancer. Yay! I haven’t suddenly got lymphoma or melanoma. But, there was not enough sample to confirm the estrogen receptor and Her2 status. It is possible that the cancer has mutated and one or both of those markers has been lost. Fingers crossed that isn’t the case.
If the cancer becomes ER negative then the letrozole will be ineffective and if it becomes Her2 negative the herceptin becomes ineffective. If the cancer loses both there will be a lot of chemo in my future.
So, because there was not enough sample to complete the testing, I am booked for a repeat biopsy on Tuesday afternoon. Joy.
My onc also told me that she has been in touch with my radiation oncologist and most likely I will be going for radiation on the lymph node at the beginning of January. The question now is how many treatments will I need?
Friday morning, dark and early, and rainy of course, I trundled off to the Jubilee. I got to the clinic where the biopsy was to be done and it was all closed up. The clinic was actually not supposed to open until after my scheduled appointment time. I waited a couple minutes and my surgeon showed up. She told me to just take a seat and she would be back to get me in a few minutes after she had set up.
A clerk showed up then and called me up to confirm my name and birth date then I waited a few more minutes.
My surgeon came back and showed me to the procedure room. Normally there is a nurse in the room to assist but the appointment was so early there were no nurses yet so we were on our own trying to figure out how to turn on the big light needed for my doc to see what she was doing. I had to change into a gown and my doc came back with a resident. He got to be the assistant.
The area around the bump got frozen with lots of freezing but I barely even felt the needle for the freezing go in. Goes to show just how numb I still am from my mastectomy.
Then I got sliced open and the bump was cut out. My surgeon was nice enough to show me the piece of tissue she removed. There was a clip attached from when my mastectomy was done. Possibly the bump was just due to me reacting to the clip. Sure hope that is the case.
I got sewed back up, the end result was a 2 cm incision in my chest. I got a few dissolving stitches, a few steri-strips, and a bandage on top just in case there was any residual bleeding. Results should be back in a week or so.
I felt alright when I left but I suspect that I was just slightly in shock. I had a little bit of lightheadedness and felt just a little icky. On the whole scale I was ok though.
I went home and went back to bed for a couple hours. After I got up for the second time that day I stocked up on fluids and got myself ready to back to the Jubilee, to the Cancer Agency to be precise, for my herceptin. Ahhhh, such a good day.
Only 1 poke was needed to get the IV and I was in and out pretty quick. Needless to say I was in bed before 8:30 that night.
I spent the weekend relaxing and socialising and enjoying the Christmas season. Next week the medical fun continues.