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

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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.

carpet

Chemo- The First Three

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.

Decision day?

Today I had a follow-up appointment in Oncology.  The Tumour Board met yesterday and my case was discussed.  There were no surprises- my MRI showed no unexpected abnormalities and they had no new recommendations.

When I left my last Oncology appointment I was under the impression that my next step would be surgery followed by chemotherapy and/or radiation if required.  Apparently I wasn’t listening.  Today’s appointment was to share my decision on chemotherapy.  Luckily I had made up my mind- but imagine my surprise when they told me my first chemo appointment would be Monday.  I guess that leaves me with little time to worry about whether this is the right decision and little time to educate myself.

There are two chemotherapy medications I will be receiving.  Taxol (or Paclitaxel) is the chemotherapeutic agent.  It is commonly used to treat breast, lung, ovarian and other cancers.  It is infused once weekly for 12 weeks and yes, my hair will fall out.  Apparently the people creating these treatments didn’t realize how long it takes to grow curly hair to this length. There is just nothing good to say about that.

The second medication is Herceptin.  This is given every three weeks for one year and will start June 11th. It does not cause hair loss.  This is the treatment I want, but it comes only with chemo.  Its nasty side effects include cardiotoxicity so I am required to have an echocardiogram on Monday morning to ensure my heart is in good condition prior to my first infusion.

I’ve also received prescriptions for two other medications.  Dexamethasone is a steroid taken to help prevent an allergic reaction to the Taxol and Prochlorazine is an anti-nauseant.  I am not looking forward to taking all those drugs.

I guess today didn’t bring any bad news, just a little shock that chemo would be starting so soon.  I am planning some outings to find a wig and some scarves to get through the next few months.  I am really looking forward to getting this whole experience over with- and I hope the outcome justifies the journey.

donut

A Little Clarity…

I had the opportunity to meet with two wonderful doctors this week- my medical oncologist and  my radiation oncologist.  The Simcoe Muskoka Regional Cancer Program offers an integrated approach to treatment and schedules the appointment with both doctors together.  They had discussed my case before they met me and were able to provide some clarity.

They started the appointment by first assessing my level of knowledge and understanding with regards to my diagnosis and surgical results.  I thought this was a great approach. It not only helped to correct and clarify any incorrect assumptions or misinformation that I had but it gives them an idea of where they need to start and how much they need to explain. I learned one valuable piece of information that immediately put the pieces of a puzzle together.  Previously I had been told the margins of the tissue removed were clear.  This was only partly correct. The margins were clear of Ivan but there were precancerous cells present.  The need for an MRI and the removal of more tissue now makes sense.

The doctors also gave me a better overview of what my options are, why they are recommending those options and what may change based on my MRI results.  Basically the MRI will show any other tumours (which they do not expect) and it may or may not show the precancerous cells.  From this information they may recommend the removal of more tissue coupled with radiation or a mastectomy,  but ultimately the decision is mine.  Choosing to not have a mastectomy could result in another surgery if the margins are again not clear.  They also put chemotherapy back on the table in the treatment options- and we had a long discussion about this.

Ivan measured 5.5mm.  Any HER2 positive tumours measuring greater than 5mm qualify for treatment with herceptin.  Trials have demonstrated that there is a synergistic effect when herceptin is administered with chemotherapy.  Unfortunately this means that regulations will not allow a patient to receive the herceptin unless it is in combination with chemotherapy.  In addition there has never been a large scale trial on its effectiveness on tumours that are less than 1 cm. Because the vast majority of tumours discovered are larger than 1 cm it is unlikely that large scale trial will be done.  This gives me a lot to think about.

Given the fact that Ivan was such a small tumour and was removed at an early stage, the chances of reoccurrence are in the single digits by percentage.  Herceptin will reduce the odds slightly.  There are also the side-effects of chemotherapy to consider- mainly cardiotoxicity.  I have to decide if the benefit outweighs the risk.  My MRI is scheduled for May 28th.  The tumour board will meet May 31st and will make a recommendation and I have an appointment June 1st to discuss and make some decisions.  After that we will be starting over again with another (and hopefully final) surgery date.

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The Good, the Bad and the Ugly…

I had my post-op visit with the surgeon yesterday and now I have a little knowledge of what I have to deal with.  It is mostly good- and the bad is going to be manageable.

The best news is that Ivan was completely evicted! He was 5mm in size- anything under 1cm is good in the surgeon’s eyes.  The first four (and most critical) results of the genetic testing are also in- and also good.  I have “normal”  BRAKA1, BRAKA2, PALB2, and TP53 genes.  The rest of the panel will be a few more weeks but will hopefully yield the same results.

The not so good now.  Although the margins of the tissue removed were clear, the DCIS (which is technically the precancerous cells, or Stage 0) was more diffuse within that tissue than expected.  I will now need to have an MRI.  When the results from that are compiled with the rest of my file, the case will go before the Tumour Board.  They will discuss the findings and determine the next step- the removal of a little more tissue in the area where Ivan was, or a mastectomy.  Either way it means more surgery.  Another opportunity for Rob to work on his nursing skills:)

The other “good news”.  The surgeon feels at this point, based on her past experience, that the Tumour Board will recommend radiation, but NOT chemo.  I am trying not to get too excited as that is only her educated guess- but I am happy to go through more surgery if it means I don’t need chemo.

I am healing very well, still sore but happy with the results.  I am hoping the MRI is soon.  The Tumour Board meets on Thursday mornings and the surgeon is hoping my case can be presented next week.  I am going to keep healing until then and hope that her predictions for their recommendations are correct.

coffee Continue reading “The Good, the Bad and the Ugly…”

Ivan’s out….

So here I sit in my chair 3 days after surgery where I have been spending the majority of my time.  I was at the hospital at 6:30 on Wednesday and left at 4:30 in the afternoon and everything went well.

I was sent to the imaging department first to have a wire inserted to mark the tumor for the surgeon.  I then had an IV started and antibiotics hung to prevent infection.  I was in the OR around 10 am and met with the anesthetist to go over his questions and then with the surgeon.  She decided what method she would be using on me (LeJour) and proceeded to measure and draw on me with a sharpie to mark where she would make the incisions.  I then walked to the operating room, got on the table and was out in a matter of seconds.

I woke in the recovery room.  I knew where I was and my pain at the time was a 6/10.  The nurse gave me more pain medication and Rob was in with me in what seemed like minutes.  It must have been longer than that as I’m pretty sure I was moved to another room.  I ate a popsicle, walked to the bathroom, was given discharge instructions.  The surgeon came in to check on me before leaving and she went and talked to the kids to reassure them that everything has gone as planned.

I came home with strong painkillers and my Cheeseburger Happy Meal.  The past couple days seem like a blur.  I am decreasing my pain meds- only taking the strong ones at bedtime now.  My left side feels a little sore but getting back to normal.  The right side looks and feels like someone beat me.  The surgeon was able to access and remove the sentinal lymph nodes without a separate incision.  That is beneficial in that it decreases the risk of infection and leaves me with less scars and I didn’t require any drains.  It unfortunately means that she had to dig to get them out, and that is a little bit painful now.

It seems like a large procedure to have done and walk out in a few hours, but being home is the best.  I have waterproof bandages- so I can shower, I have been outside walking around to keep me mobile and I have access to good food I like and all the water I can drink.  Rob and the kids, my mom and sister have been making sure I don’t do too much- and believe me, I feel it if I try too much.  I will be able to remove the bandages on Tuesday, and will have a follow up visit with the surgeon on May 8th.  Every day the pain lessens and I feel like the fog is lifting a little.  I am hopeful that there is none of Ivan left with me, and we will be able to move on to the next stage of treatment in the coming weeks.

fog