I always amazes me that no matter how I try to predict what will happen next in this journey, I am more often wrong than right. Several outcomes have surprised me since my last blog entry and I think, thankfully, they are for the better.

I did return to work on May 10th as planned. I was an observer and training in a new area. I started at four hour days and after a few shifts increased to four and a half hours. I was scheduled to increase to six hour days when I had a visit with my oncologist. Due to the ongoing lymphedema I am restricted to “no repetitive pinching and gripping” (as well as no lifting over 2 kg, no bending and twisting, avoid stairs and ladders). My job requires the constant use of forceps making pinching and gripping unavoidable. I am once again on sick leave.

I was decided that I should discuss the limitations with my surgeon at my next visit (today) and determine if she felt the restrictions could be lessened. She agreed with the assessment. From previous conversations with Occupational Health and my Long Term Disability provider I understand these restrictions will be in effect until my next Oncology appointment in early September. It will be nice to have the summer to heal, but the lymphedema is a constant issue.

I have been going for regular physiotherapy since January. The lymphedema is better but not great. It gets worse if I try to use my arm too much or if the weather is hot- the swelling increases and I have been getting tingling in my hand. It has been suggested by my physiotherapist and reinforced by my surgeon that I should try wearing a compression sleeve. I will be making an appointment for that in the near future. It doesn’t sound like fun in the summer but hopefully will help get the situation under control. The bad news- this is most likely a chronic condition.

The visit with my surgeon also brought another issue to light. There is still the possibility of a third surgery. At this point it is too early to tell how asymmetrical I am due to the presence of the swelling caused by the lymphedema. We are hoping that by my next visit (Jan 2020) we can make a better assessment and decide if surgery would improve the symmetry or if the risks would outweigh the benefits.

I had my first mammogram since treatment and prepared myself for a recall. Patients are often recalled after surgery for obvious reasons:

• A clear, well defined image is required as it will be used as a new baseline to compare all future images.
• The scar tissue often causes difficulty in producing a good clear image.

I was ecstatic when I received the letter in the mail letting me know that everything appeared normal.

On June 4th I completed my Herceptin treatments. One year to the day of my first chemotherapy treatment. I hadn’t planned on ringing the bell again, but it felt great when I did. To make it even sweeter, my oncologist had given me great news the previous day. She told me that she didn’t feel that I would benefit from taking Tamoxifen. The thought of taking it had been keeping me up at night- it’s impossible to explain why I could choose to take chemotherapy but I could not willingly choose to take Tamoxifen. Luckily I was not forced to make the decision.

Things are looking up and I am in a much better place than I was last year at this time. I am going to take the time I’ve been given this summer to heal and relax. Soon enough I will find a new normal- but for now I am going to enjoy being a survivor.

March 21, 2019- it’s hard to believe that today is the one year anniversary of my diagnosis. I have learned so much about things I never wanted to know, and I have so many scars to prove it. This is a much better place to be in my treatment, and I hope to never return.

At this point my greatest physical limitations centre around fatigue and constant battling with lymphedema. I have been going for physiotherapy since January and while the fluid has lessened it seems to move from one area to another, never really gone. It appears that it may be a chronic issue, but one that is manageable. I have four herceptin treatments remaining, and then there is the “opportunity” to take Tamoxifen. I have not yet decided if the risks outweigh the benefits in my case and my oncologist has given me some time to research and think it over.

I have had a couple of meetings regarding returning to work and I feel we now have a plan with which I am comfortable. I expected to return this week, but due to some limitations I have been given the gift of a little more time. My official return date is May 10th. It’s hard to believe I have been off for almost a year.

There are many other things to smile about. I have hair:) It seems to be growing back as curly as it was and it has returned to it’s former colour (with a little help). We are planning to go on vacation- the same one we cancelled last year. I can’t wait for some warm sunshine and relaxation.

May 21st is the date my next mammogram is booked. I hope that day is the start of the end of this journey. The signal that it is time to take all that I have endured and learned and put it where it belongs- in the past.

It is with hope and joy that I say good-bye to 2018 and welcome 2019.  The last nine months have been filled with constant and ever changing challenges and I hope that the worst is in the past.

My burns from radiation healed very quickly and although the skin remains a slightly darker shade there are no other visible reminders.  The progression of the burns was exactly as I was told.  They peaked at about ten days after the final treatment and were better within a few days.  I was not warned that the peeling skin would smell like decaying tissue- thankfully that was short lived.

The Christmas season has been busy and I haven’t noticed and great changes in my energy level, but I am hoping that the new year will give me time to heal. The Herceptin treatments are still causing joint pain and my last visit with my oncologist has revisited the possibility that I may be given the choice taking the hormone therapy Tamoxifen.  This comes with a long list of possible side effects and I will be carefully considering my options before I agree to choose that path.  It seems the whirlwind is settling and I may have some time to breathe.

I did not return to work as I expected and have been given the opportunity to have a couple more months off to rest and heal (and hopefully grow a long, curly head of hair).  I am sure it will fly by and I am looking forward to Spring already.  As the year draws to a close we would like to again thank the family and friends who provided us with meals, phone calls, texts and e-mails.  Your support has been incredible and we couldn’t have done it without you.

I am usually asleep long before midnight on New Year’s Eve but this year we’ve decided to celebrate.  Aurora is going to keep me up (with lots of coffee) and this Desroches Family is going to say good-bye to all that was in 2018 and look forward to the gift of 2019!

 

It was just eight months ago that I had a mammogram that changed everything.  So much, and so little has happened in these months.  I have learned more than I ever wanted to know about cancer and treatment and put everything else on the back burner.  This week is my last week of radiation and my last treatment is Friday at 5pm. I will be banging the gong to symbolize the start of a new chapter- the chapter of healing.

Radiation treatments have been a breeze up to this point.  The treatment itself takes less than five minutes and all I have to do is remain still.  The radiation technologists make sure I am in the correct position and I get to look at the glass art on the ceiling.  My skin is still in good condition, just a little pink.  Occasionally it is itchy and I get shooting pains, but it is a normal reaction.   The burns will be at their worst about 10 days after the treatments are done and they should heal quickly after that.  The long term side effects vary and are not predictable.  I am happy that my cancer was on the right side and I don’t have to worry about heart damage.

The fatigue is the worst side effect at this point.  Some days are not bad and some days are not good.  It’s the kind of tired that doesn’t improve with rest but gets worse without it.  I am also dealing with joint pain- probably caused by chemo.  I feel (and look) like I’m about 95 years old when I get up after sitting for an extended period.  I hope this improves over time.

My next goal is to ready myself to go back to work.  Although my oncologists would prefer that I take a few more months off,  circumstances and choices are forcing me back sooner.   Provided my burns are bearable and healing I will probably be back at work in some capacity at the end of the month.  This will prevent my vacation bank from being paid out and will allow us to take some holidays next year-  we need this as all our vacations were cancelled this year.  I am hoping to start with a couple four hour shifts each week and work my way back to full-time.

I have been warned that the end of treatment brings a whole new set of issues.  The past eight months have been focused on treatment and many people find they have never had the time to deal with and accept the fact that they have been diagnosed with cancer.  I am hoping that my excellent prognosis coupled with keeping busy preparing for Christmas and going back to work will keep me out of that darkness and in a space of hope and light- twinkling Christmas light:)

October is Breast Cancer Awareness Month and in honour of that I think it’s time to provide an update on my current status.   I had surgery on September 21st and that went well.  My incision seems to be healing very well, and my port incision seems to be making some progress as well.  I still have dressings and steri-strips but I predict I will be able to go without within the next week- that hasn’t been the case since June 3rd:)

I had a visit with the radiation oncologist today.  He was able to share the findings from my surgery as well as discuss the next step.  The tissue that was removed during this surgery was normal- no cancer, no wanna-be cancer cells. YEAAHHHH!!! That means that radiation is the next and hopefully final step.

I went for my pre-radiation planning appointment today as well.  I was with 3 radiation technologists who prepared me for the 20 radiation treatments that I will start in 2 weeks. The treatments are 5 days each week for 4 weeks and the entire appointment will last about 15 minutes start to finish.

I was asked to lie down on the table where they positioned me as I will be positioned for each treatment.  They took measurements of my position in relation to the table as well as the size and orientation of the headrest and leg supports.  They then did a quick CT scan and followed by tattooing 5 dots on my chest that they will use to confirm that I am in that exact position each time I have a treatment.

I am hoping that the radiation experience is MUCH easier than chemo.  I have been assured that it will be, but I am skeptical.  I still have some residual effects from the chemo including hand swelling, skin pigmentation and fatigue. My taste buds have recovered and my hair has started to grow back, but now my eyebrows and lashes have fallen out.  I am looking forward to having hair again, especially in this damp, fall weather.

And on the topic of pumpkins and breast cancer, Rob supplied the Georgian Bay Cancer Support Centre with 500 pumpkins for their Painted Pumpkin Campaign. I have attached some pictures below- Happy Thanksgiving to everyone!!!

I am now just over two weeks beyond my last chemo treatment.  I am feeling significantly better, although I still have a long way to go.  The first week I was weak and nauseus most of the time. I stayed in my chair for the better part of the day and slept about twelve hours at night.  I now need less sleep and I am able to get a few more things done (like back to school shopping :).

There are some side effects that seem to be lingering.  My right hand has some mild skin discolouration as well as swelling. For some unknown reason I have developed edema in my ankles and feet.   I had dealt with this occasionally during chemo, but it returned on Monday and is not subsiding.  It’s not too painful (more of a constant ache) and worsens as the day goes on.  Hopefully it will resolve itself soon.  I had it checked yesterday when I was in for a Herceptin treatment and it doesn’t appear to be concerning at this point.  I have an appointment on Friday and will have it looked at again if there is no improvement.

I met with the surgeon the day after my last chemo.  My next OR date is September 21.  She will be using the same incision and taking a small slice of tissue at the margin of the previous excision.  She is very optimistic that there will be nothing in this tissue either cancerous or pre-cancerous.  If that is the case the surgery will be followed by radiation.  I see the radiation oncologist this week,  but he had previously said 20 treatments over 4 weeks. In the event that there are some relatives of Ivan in the tissue then the plans will change.  I would be scheduled for a mastectomy completion and reconstruction- no radiation would be likely at that point.

It seems that pumpkin season is almost here and we missed the summer.  Looking forward to brighter days ahead.

 

 

There is a ceremony that takes place after the last chemotherapy treatment.  A retired Navy admiral was undergoing treatment at a Texas hospital in 1996.  He started the tradition when he donated a nautical bell to the hospital and wrote this poem:

Ring this bell

Three times well

Its toll to clearly say,

My treatment’s done

This course is run

And I am on my way!

 I am beyond joy that I will get to ring the bell tomorrow (August 21).  It has not been “easy peasy” as I was told it would be, and I have questioned my decision to proceed with chemo every day.  I made the decision because I believed at the time that I needed to do everything I could do to decrease the chances of recurrence- even if the percentages were in the single digits it seemed that I was better to take the risk.  I am not sure the decision would be the same today.

It’s impossible to know the toll the side effects will take prior to beginning.  I unfortunately have more than my share and hope that they are not long term.  Luckily none of my side effects delayed treatment and I will finish as scheduled.  I had a new PICC line put in place after several weeks of treatment though IV sites.  It took an hour and many pokes before I agreed.  The port was removed the following week as the incision had not healed eight weeks after it was inserted.  The incision has still not healed probably due to the chemo and steroids.  The PICC will be removed tomorrow after the treatment is complete.  I am looking forward to a long shower.

Wednesday I have an appointment with the surgeon to determine the next step.  I hope that my chemo brain will be clear enough to understand my options and her opinion.   I also look forward to healing- after 12 weeks of fighting this battle I want to move on and win the war.

 

I have four chemotherapy treatments left.  I am having a hard time wrapping my head around that number.  I don’t know if its harder to believe I have made it through eight or that I still have four to go.

Since I last posted I have had three more treatments.  Treatment number six resulted in a second anaphylactic reaction.  Luckily it was recognized faster and was less severe.  They have added Montelukast (normally used to treat asthma) to my list of pre-treatment meds and that coupled with running my chemo over three hours (instead of the recommended one and a half) seems to have stopped any further reactions.  This means I now have five medications (montelukast, benedryl, dexamethasone, solu-medrol, and ranitidine) prior to chemo.  It explains why I feel like I’ve been hit by a bus before they even start.  I have learned in reading that 1.3% of patients have a severe reaction to Taxol and only 3% of those patients have the reaction after the second dose.  I am defying the odds.

My port is still causing problems.  It was surgically placed 6 weeks ago and the incision has yet to heal.  The stitch that was placed two weeks ago was removed as it did not help at all.  After a discussion with my oncologist we have decided to give it until my next check-up.  If its not healed at that time it will need to be removed (in her words – it better come out because with my luck I’ll end up with a clot).  Luckily it isn’t infected, just open. This also means I need an IV every week for treatments, but on the bright side they have been giving me hydration along with the chemo.  Considering  the fact that I was warned that the effects of the chemo would be cumulative I am oddly pleased that I don’t feel worse.  I am crediting the hydration and the lack of reactions for keeping me at an even level of crappiness (for lack of a better word).

I did finally get a wig.  I am getting used to it.  Its not as curly or as long as my missing hair, but its not bad.  I will wear it when I go out but I’m getting used to being bald at home.  When I get a real picture that I like I will post it:)

I am glad that week has passed and I hope it takes all its negativity and leaves.  The week did not bring much good right from the start.

I went in for blood work last Tuesday morning at 10:15.  When you have blood work on the day of a treatment it is scheduled for two and a half hours before treatment.  This is theoretically the time required for the lab to perform the testing and the treatments to be prepared by pharmacy after receiving acceptable results.  When the nurses looked at my port they decided not to use it.  The incision had previously been healing well, but I noticed on the weekend that it had opened slightly.  The opening was just enough to make them decide to err on the side of caution, later to be confirmed as the correct decision.  I was sent to the lab for bloodwork,  but was called away for my Dr’s appointment before I could get the samples drawn.  Due to a miscommunication I was left sitting in the exam room for almost an hour and a half waiting for the doctor to arrive.  It wasn’t really that big of an issue as I had to wait for my chemo that afternoon anyway.  When I finally did see the doctor she ordered home hydration for the next three weeks, and sent me off to have my bloodwork.

By this time it was 12:00 and my chemo was scheduled for 12:45 and I did what had to be done.  I grabbed my bag of samples and delivered them to the lab.  My results were delivered on time as I knew they would be thanks to my awesome co-workers.

My sister was spending the day in treatment with me to give Rob some time to work.  Each time I had a treatment I had noticed my face would flush and I would feel strange for just a minute or so.  I let the nurses know and each time they said they would keep an eye on me.  This treatment started as normal, but at 38mls of a 529ml infusion things went south.  It started with the facial flushing, and quickly progressed to a full-blown anaphylactic reaction.  As soon as it started to worsen I told Lana to get a nurse and there was none to be seen.  With a little uproar they came running and by that time I was having difficulty breathing, and felt like there was an elephant on my chest.  My IV was immediately stopped and I was given large doses of Benadryl, Solu-medrol and Ranitadine.  It took about 45 minutes for the room to stop spinning and the treatment was slowly resumed.  Sadly this reaction doesn’t mean I can stop the chemo, it just means I need extra steroids and Benadryl each week before the treatment starts.  Not my idea of a fun time.

I had to have an IV started for the treatment since my port was not being used.  They found a vein in my hand and decided to leave the access in place for the home hydration that was ordered for the following day (Wednesday).  When I hadn’t heard from anyone by late Wednesday morning I figured a call was in order to confirm that someone would be coming.  No order had been received, so I called oncology and found the order hadn’t been placed.  This was rectified and I got a call saying supplies would be delivered to me that evening and a nurse would contact me.  I received the supplies at 7:45 pm and waited for the nurse contact.  At 10:45 I made the call myself.  Apparently they did not have the order, but they would get it in the morning and set up a time.  I got the call at 11 am that someone would be visiting me between 11:30 ans 12:30.  She arrived on time, but when she attempted to access the IV site it had gone interstitial (infiltration).  She was a new nurse and couldn’t attempt to place a new IV without supervision. I received two calls later in the day with regards to placing a new IV,  but declined.  I decided it was better for me at this point to increase my fluid intake and cut my losses for the week.

Thursday evening when I looked at my port incision I didn’t like what I saw.  They had placed steri-strips over the incision and they had become increasingly wet over the day.  Friday morning I called oncology and they recommended I come in.  Upon removal of the strips it was discovered the incision had a one and a half centimeter opening and requireda stitch.  Luckily there was a doctor in the department willing to do that for me and I was discharged quickly.

Lastly, my ankles have decided to rebel.  They are swollen and puffy and achy and I am grateful it is sandal season as I’m sure everything else would feel worse.

After that long week, a new one has begun.  I went for blood work this morning and my port was accessed (whew).  At noon I went to try on a wig.  Up to this point I had not made any progress but now with a little luck I will have red curls by the end of next week. This week looks better already.

I have given myself a couple of weeks to get adjusted to chemotherapy before blogging.  Who am I kidding -I will never adjust to this.  I will get through this but it will not be fun.  There is nothing fun about chemo.

I had my first treatment on a Monday morning and found out that I have the veins of a redhead -funny I pay for the haircolour but the crappy veins are free. They decided immediately that I needed some type of more permanent access to my veins.  They had 2 offerings- a PICC (peripherally inserted central catheter) or a port.

The PICC was placed on June 6th . They chose to have this in place as it is a less invasive procedure than the port placement and it could be done sooner.  The procedure was not painful, but I hated the PICC.  They think that I may have a sensitivity to chlorhexadine and the entire area was constantly itchy.   A PICC needs to be flushed weekly which would be inconvenient after my weekly Taxol treatments are finished.  The line would remain in for a year for the Herceptin treatments, but because those treatments are every three weeks I would need to have a weekly nurse visit for the flush.  The PICC access hangs from your arm and can’t get wet- makes a shower very challenging.  We wrapped it with a clean dishtowel and put elastics on the ends, then with plastic wrap and more elastics.  We covered that with a WonderBread bag, elastics on each end again.  I was careful and lucky and it didn’t get wet- Wonder Woman;)

The port was implanted on June 14th.  I was given conscious sedation and was awake through the procedure.  This was slightly more painful but the results are more palatable.  For several days I had both lines- even more of a challenge to shower as neither could get wet.  The PICC was taken out on June 18th.  The removal didn’t hurt but was gross.  The line was 42cm and they slowly pulled it out like a long piece of spaghetti.  I could feel it all the way.  As of today I have a fully functional port and even better, I can have a normal shower.  My bloodwork was drawn through the port today.  There was no pain and no trying to find a vein.

I have now had three Taxol treatments (of 12) and 1 Herceptin.  The fastest the treatment can be is about 2 hours.  I have to take Dexamethasone and Benadryl prior to treatment.  The Taxol is infused over about an hour and a half.  I put my fingers in an ice bucket for this time (in the hope that the drug will do less permanent nerve damage in my fingertips) so it’s somewhat boring. The Benadryl makes me too tired to do much anyway and when it’s over I need to come home and sleep.  I can’t even begin to describe the fatigue.  It’s worse the day of the treatment and the following two days but lasts all week.  I have to rest every day or I am a complete mess, but I have trouble actually sleeping.  I feel unwell most of the time.  It’s not the stereotypical movie chemotherapy sickness, but just sick.  Achy, sore, dry eyes and nose, headache, upset stomach, the list goes on and seems to get longer every week.   There are some good moments but by the time those come around its time for another dose.  This can’t be over soon enough.

My hair started to fall out on June 17th.  Each day it fell faster. I learned that curly hair doesn’t fall out like straight hair.  Curly hair falls and gets caught resulting in matting and dreadlocks.  Each day you have to comb the dreadlocks to get the loose hair out and when you try to do that you end up pulling more clumps out.  By yesterday I was down to about half my hair.  Considering the amount I started with I still looked acceptable and anyone who didn’t know what it looked like before wouldn’t have suspected- but I had enough.  The trauma of it falling out became worse than the prospect of not having hair, and I had it shaved.  It is a huge relief, but I still hate it. I’m not sure if the diagnosis or the hair loss was more emotionally crippling, but I am grateful that they are both done. I have not yet been able to find a wig- there is surprisingly few to choose from in Barrie.  This is, of course, the year that my driver’s license and health card will need to be renewed, so my search continues.

My lack of energy should result in us eating a lot of eggs and Kraft Dinner- but we are so lucky.  My lab colleagues have more than risen to the challenge and have been providing us with three dinners a week.  When you add to that my mom and sister’s cooking and some other family I am pretty well off the hook.  I can’t imagine how we would manage without all the help and there are no words to express our thanks (Griffin still says there is nothing to eat in this house- brat).   It is my sincere hope that I never need to return the favour- not that I don’t want to cook but I wish everyone the best of health.