Anthracycline Extravasation - oh CRAP I’m an “incident report”

Cycle 2, day 14 - I don’t get to sleep until after 4am the morning of my golf tournament and then wake up around 10am with a skull pounding headache that won’t allow me to go back to sleep. I manage to haul myself out of bed to eat something, take some Tylenol and heat up a hot pack for my neck.  Only one extra strength Tylenol remains in the bottle and I hope it will work in combination with the hot pack. I somehow get back into bed after microwaving my hot pack and manage to sleep a bit until noon. The hot pack has helped but I still have a low grade headache for the rest of the day.

As I’m eating breakfast the film crew returns. Once again they film me putting on my makeup and several times I think about how weird it is that I feel comfortable with two strange guys on either side of me with their camera lens’ literally inches away from each side of my face. I don’t know where I found room to hold up my mirror to see what I was doing because they were so close to me. We do some more one-on-one interview questions and then all head out to The Willows where I’ll be surprising people at the banquet. I have it all worked out with the event coordinator that she notify me when almost everyone is through the buffet line. I figure they can eat while I talk J The film crew is waiting for me when I pull up and I feel like Ed McMahon ready to give away the Publisher’s Clearing House prize. It’s like a high-stakes secret stake-out. We don’t want anyone to know I’m there, so the doors to the banquet room are closed until the event coordinator bursts in to get everyone’s attention. She tells them they are being too loud and security is coming. Next thing they know, I’m walking through the door surrounded by the film crew and it’s like something out of a crazy movie. The entire crowd goes ballistic when they see me and I feel good knowing they are happy I’m there. The standing ovation seems to go on forever so I make motions for them to sit, as I know the film crew has a flight to catch and it’s embarrassing standing there with all that crazy applause. I didn’t do any of the work and don’t feel I deserve the accolades. The crew sticks around for a few minutes to film before rushing off to the airport with all their gear and I continue on with my prepared speech. At the end I tell everyone I don’t want it to look like I’m being rude, but my body can’t fight anything off right now so I’m literally walking out the door and will not be talking to anyone. I’m just going home. No hugs, no handshakes, nothing. The end of my speech brings on another standing ovation and I walk out of the building to go home and rest.

I go home, put on my new bear pj’s and wait for Husband to come home. He shows up with my brother and niece who both volunteered to take the team photos (a job I usually do) awhile later and they all regale me fun stories from the entire day. It feels like I was actually there because they are able to bring it all to life, and I recognize many of the people they are talking about. I download the photos that were taken and we all look at them together as more stories come up. It sounds like it was another crazy FUN day and I’m sad that I missed it. On the other hand I know I would never forgive myself if I got sick, and I also know there’s no way I could have been there all day because I just don’t feel strong enough. It’s hard to admit that to yourself, but I’m old enough and have been through enough with this cancer crap that I should know what really is best for me.

Day 16 - I also have a short weekend getaway coming up and I want to be able to take the trip I paid for many months ago. Our dragon boat team of breast cancer survivors (Busting with Energy) was leaving for Peterborough, Ontario for a major breast cancer dragon boat festival of over 73 teams from across the world. I believe there were 15 teams from Australia alone that attended, as well as 2 teams from Italy, many from throughout the U.S. and tons of teams from Canada where breast cancer survivor dragon boating began with a study by Dr. Don Mackenzie.

I purchased some hospital procedure masks and also still have a 95% effective one from the H1N1 scare last year that hasn’t been used and I’m bound and determined to be on that plane. Luckily I’m staying with my old radio pal Mike Melnik and his wife Donna and I’ll be able to get all the rest I need. An added benefit is that he lives only 2 blocks from the race site! I am on a flight separate from the team and arrive long before they do. I only managed to make it to one race on Saturday afternoon, but I took in the parade of teams, the gala supper Saturday night (which was the biggest sit-down meal EVER in Peterborough, serving over 2,000 people), and wandered through the shopping area with Mike  -stopping every couple of minutes to visit with someone he knows. I sleep in late every morning at his place and feel at home enough to help myself to whatever food I can find. An added bonus is getting to see his daughter Jess who was just a wee little thing when I last saw her. She used to call me when I was on the air at CKIT in Regina to request a song. I would, of course, tape her and play her voice on the radio. We’ve been each other’s “fans” ever since and to see her as a confident young woman with a career and so much talent is overwhelming. Where does the time go?! As a child-free person (notice I didn’t call myself child LESS) I’m now finding that I feel exceptionally old because everyone’s children are growing up way too fast and I’m wondering where the time went.

Day 19 - I come home from Peterborough with what feels like a perma-grin on my face and from within. The getaway to laugh and visit with a friend was just what I needed to get through the next chemo I was facing later that week. We spent hours bringing up names from the past, telling radio stories, and several times over the course of the weekend we laugh about the drive from the Toronto airport to Peterborough. Mike brought his 2 seater Pontiac Solstice and I had a fairly large suitcase, a carry-on and another back-pack type bag. I discover in the loading lane out front of Pearson that he wasn’t joking when he said his trunk only holds two 12 packs of beer. Our only option is to put my suitcase on top of me for the 1.5 hour drive to Peterborough down the 401! Mike somehow manages to lift the suitcase in on top of my lap, balancing the bottom section on the console. He then retrieves one of my bags from the trunk and I pull out my little travel pillow. I nudge it under my right knee and it takes care of the weight of the suitcase on my lap. Mike is barely able to shift into 5^th gear because of the suitcase on the console. I’ve got my arms on top of the suitcase,  and when he removes it I realize I likely would have been really uncomfortable without the suitcase on my lap as there are no arm rests!

 

 Needless to say, the return trip to Toronto’s Pearson International Airport is made with Donna’s much bigger car and I don’t have to snuggle up to my luggage for the trip. By 9:30pm I’m home in Saskatoon and Husband picks me up in his old classic car for a smooth ride home. I’m jet-lagged and on the wrong time zone but giddy with happiness from such a great weekend with friends. The stress relief that laughter brings is priceless. Thank you Mike, Donna and Jess!

Day 20 – chemo is days away but I’m feeling strong. The damn rain has finally stopped and we still haven’t planted the vegetable garden or any flowers in the yard. Husband takes the night off and rotor tills the garden (on June 15^th!) and then we plant it right away. We also dig out some perennials that didn’t survive the winter, and get some petunias planted. Everything else goes back in the greenhouse because more stupid rain is coming. My rain gauge showed 7/10^th’s of an inch one day and then 5/10^th’s the next. I’ve officially had enough and want SUN.

We see the oncologist and he tells us that I will likely only be getting four cycles of chemo instead of the original 6 we discussed. I’m SO ecstatic, but my happiness is soon squashed like a bug.

Cycle three, day 1 -I have an I.V. infusion at the hospital and then my chemo at the cancer centre later. Everything is running smoothly until the actual chemotherapy starts to run. The Epirubicin has been running for less than 2 minutes and I can feel that something is not right. My first instinct is to yell “Nurse!” as loudly as I can (which is very loud by the way) but I grab the call button instead and am relieved when a nurse is in the room in moments. We have newer I.V. machines at the Cancer Centre now. I know how to stop the old ones, but all I’ve learned on these new ones is the very valuable button called “Silence” to stop the I.V. from beeping me to insanity. The nurse has 20 years of experience and immediately sees we have a problem when I show her my arm and she shuts down the machine. It’s obvious that the chemotherapy is somehow leaking outside of my port and into the surrounding tissue. I’m scared shitless because I know how serious this is. I’ve done extensive reading on Epirubicin and how toxic it is if it gets outside of your vein. Oddly enough, my friend Julia who accompanied me to the Metastatic Breast Cancer Conference in Philadelphia in May had picked up some information on exactly what has just happened to me. The technical/medical name for it is Anthracycline Extravasation and it is NOT pretty. It’s downright scary.

Meanwhile back at the cancer centre, the skin around my port is red, hot, burning, throbbing, itching, and in general scaring the crap out of me but I remain calm. I become slightly agitated and worried when another nurse wants to complete the Epirubicin infusion by using a vein in my other arm. My veins don’t like needles anymore and I’m worried the needle will poke through the vein and we’ll have the same problem on the right hand side. I do not move my arm one iota during the remainder of the infusion. I’m that scared of it happening in my right arm too. Husband is with me and has no idea how serious this is. I don’t tell him what I know, but I can tell the nurse knows that I KNOW. She is extremely upset and apologizing but there is NO REASON for her to apologize because it’s no one’s fault. There’s no way anyone could have known that the time my port decides to fail is during the most toxic medication possible. It’s just the kind of luck I have. Shitty luck. My arm is rubbed with a sardine-smelling toxic chemical called DMSO (Dimethyl Sulfoxide) which causes it to burn and hurt even more, and is then wrapped in an ice pack which must remain on for an hour or two. My oncologist and nurse come in to check out the situation at my request and I leave after business hours with a large ice bag wrapped around my arm and proceed to drive home with my left arm elevated.

The presence of the chemotherapy in my left bicep is likely going to cause a chemical burn from the inside out.  Worst case scenario is there may be blistering, my skin and tissue may go necrotic (turn black and die) and I may have to go through numerous surgeries to repair my arm. These surgeries could include skin grafting, reconstruction, debridement (like any other burn patient) and severe disfigurement. It scares the crap out of me but I know there is nothing I can do to change what has already happened. All I can do is hope and pray that it will not be a severe case and that my body can handle it. When my white cells and infection-fighting neutrophils will be at their lowest is when I may be in some very real danger of infection in my arm because of the toxic burn from the chemo. I inform my parents and some other family members via email and carry on with my new ritual that will encompass the next week.

Every four hours I must put DMSO on the area that’s affected, along with the surrounding area. After it dries/absorbs I must then ice it for 15 minutes. I have to do this every four hours for the next SEVEN days. I’m on a steroid induced high but the thought of waking up every four hours to put this chemical on my arm, wait for it to dry, and then ice it for 15 minutes makes me exhausted just thinking about it.

Day 5 - I finally show my husband a brochure I got at the Metastatic Breast Cancer Conference in Philadelphia on exactly what has happened to me. I never considered I would have to face this kind of complication. He realizes how serious it is after reading the information and looking at the horrible pictures. I take the paper and put it away in the spare room so I don’t have to see it anymore. I’m having enough anxiety about it and certainly don’t need to see it several times a day.

Cycle 3, Day 6 – after several days of my “arm ritual” I am indeed exhausted. But, I’m usually exhausted at this point in my chemo cycle simply from a lack of sleep. This time around it seems like all the side effects I’ve experienced through the first two cycles are happening sooner and are harsher. One to two days earlier than normal every inch of my skin hurts. Before I even eat my supper I have a severe case of heartburn that has me actually considering that it may be a heart attack instead of heartburn. 2 Tums and a Gravol later it’s gone and I’m able to eat the home made Turkey soup my mom sent.

It’s a beautiful sunny day but I don’t haul my butt out of bed until almost 3pm. Waking up at midnight, 4 and 8am, and again at noon has me utterly exhausted. I have three alarms set for each four hour block of time to ensure I won’t sleep through the time I should be applying the DMSO and icing my arm. Every four hours I get up, apply the solution, set my alarm to wake me up in 20-30 minutes when it will be dry and then set my alarm again to go off in 15 minutes so I’m awake to take the ice off my arm. Luckily I have three ice bags I can rotate but two of them are rock hard and don’t bend around my arm like the other one. It takes over 6 hours for one to defrost to the point that it’s pliable and I can use it. Since I’m up anyway I take the time to eat a bit of cereal and drink juice so I won’t be weak when I finally decide to get out of bed once and for all.

I attempt to do some work in the yard late in the afternoon. I finally set foot into a greenhouse on June 15^th to purchase some flowers and now have to find the energy (and Husband/friends) to get them in the ground. I start by attempting to dig out some grass and dill in an area of the garden the rotor tiller couldn’t get at and find that it hurts my arm just to try and scratch away at the dirt with my three-pronged garden rake. I loosen it as best as I can by taking it really slow and then proceed to pull stuff out by hand but before long my body is telling me to sit down and rest and I must abandon my good intentions. I decide that since I can’t do any actual “work” I should sit down with my garden notebook and write down where I want everything planted. If I get Husband out to plant he works much faster than I do and everything must be planned out or we both get too stressed. I tend to putter around and think too much, plus my menopausal mind gets easily distracted. I can’t keep up with his speed, so I decide that if I plan it out there will be less stress and more will get accomplished in a short amount of time.

I brought my own plants out of the greenhouse yesterday to start getting used to sunshine. Rather late to be hardening them off and getting them adapted to the sun’s rays but it’s been a crappy year. I’m surprised and pleased to see some lettuce seeds already sprouting in the garden and they’ve been in the soil for less than a week! After more rain late last week I had to push several bean seeds back into the soil…they came floating back up to the surface with the rain. I hope for SOME kind of garden crop this summer but it’s extremely late in the season so I’m not sure what to expect.

I feel a huge sense of urgency to get my store-bought and home grown flowers into the ground and planters. It’s like time is against me because of what’s happened with my arm. I am constantly thinking that I could be hospitalized soon and therefore I really should try and tie up loose ends at home. That includes getting the flowers planted. I’ve had offers from friends and may now have to take them up on it. Just bending over causes pain for my affected arm so I’m leery of trying to do it myself. I don’t want to take any chances and make the situation worse than it may already be. I don’t even want to think about what should be done INSIDE the house but am thankful we recently hired a young woman to do some house cleaning for us every few weeks so at least I don’t have to worry about that. I keep thinking I should pack a hospital bag and update my medical history and medication information in the event I need to go to emergency. I wonder if I’m being paranoid or just a good planner. Perhaps a little of both. Tonight will be the 6^th day of sleeping on my right side all night with my left arm elevated. I don’t dare sleep on my left side. I figure if I’m not even allowed to shower, then I likely shouldn’t expose my arm to the sun or lay on that side. I know that elevating it will help so I try to get my arm as high and stretched flat as possible each night and consider myself extremely lucky that I’m able to sleep…even if it’s just 4 hours at a time.