Good-bye 2018!!!

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!

 

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My Turn To Bang a Gong

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:)

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Happy Pinktober!!!

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!!!

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Is That a Light I See….

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.

 

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The Bell Tolls for Me

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.

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A quick update…

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:)

talk soon

The Longest Week of the Year…

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.

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