February 26, 2012: Carmela's Breast Friends Network: Local Hair Shearing supporting Breast Cancer Research - we believe in giving where we live!

Email send to support Breast Cancer Research - Sent February 26, 2012

To my family, friends, neighbors and colleagues,

Today (February 26, 2012) my husband, Todd, will be shearing his locks to support the de-foliage of my locks (already complete) and in support of Breast Cancer Research. 

This personal event coincides with the end of the soccer season and will be witnessed and executed by the Port Moody Soccer team that Todd coaches and the team that my older son, Graeme, plays on (the Port Moody Titans).

The Soccer Team challenge: Todd has proposed to his soccer team that, instead of a year-end coaches gift, each player donate $20 if Todd will brush cut his hair (he has never done this before as he still has a full head of hair in his 40’s!) and, if there are enough donations of an addition $10 per player, he would shave all his hair off. 

The Verdict is….Between his soccer team and his squash buddies, the verdict is in….it is all coming off:o)

Your Challenge:  Support Breast Cancer Research by considering to donate toward this event or creating your own event (e.g. through your own sports teams (my other son’s (Iain),  basketball team is looking to have their coach’s (coach Marc) hair shorn as well in the near future, the Enbridge Ride to Conquer Cancer -- my sister Maria and my colleague Matt are both riding in this event – I can provide details to their fund raising efforts if this is a good option for you).  You can provide your donations directly to Todd or I, or you can provide your intention to donate by responding to this email until we find a better way of collecting the donations. 

Please forward this onto your network of family, friends, neighbors, teams and colleagues (if you are comfortable doing so).  I will also post this on my blog (with pictures are located in the facebook link below):

http://carmelacancerbabe.blogspot.com/

https://www.facebook.com/media/set/?set=oa.392968497395404&type=1

I have to admit that my husband's head does not look all that bad - he seems to be a pretty hansome bald guy from my vantage point:o)

Things to note:

·         In our community: In our Port Moody Glenayre neighborhood of around 500 houses there are at least 4 families living through Breast Cancer or surviving through Breast Cancer (including my family).  This does not include anyone I do not know about and others in the neighborhood that are living or surviving through other cancers. I will do more research on this as bringing this close to home and understanding how we can “Give where we Live” will be that much more meaningful.

·         Early detection for Breast Cancer and any Cancer is key to decreasing invasive and costly treatments, recurrence and mortality – we will want the donations focused on research that can detect cancers as early as possible!

·         Philanthropy: In working for a great company like TELUS, we have a great “Give where we Live” program that emulates our intentions to bringing home how we can directly help in and through our communities.  I am very proud to work for a company like TELUS that supports our communities and provides awesome telecommunications and health services (yes TELUS has successfully merged with a few health care companies over the last number of years that support many health issues including e.Health options).  TELUS also supports Breast Cancer research and many other worthwhile not-for profit/charitable organizations through our well known philanthropic philosophy and focus. I will explore avenues on how we may be able obtain additional support from TELUS using any donations we receive through this fund raising effort – I will keep you posted on my progress here.  (Disclaimer: I in no way place any obligation on TELUS to support as this is our effort to support Breast Cancer research – any support from TELUS will be after the fact and completely voluntary).

·         All donations will be given to the Breast Cancer Foundation.

Let’s really make Breast Cancer history through our local community!!

My Best,

Carmela Thomson Think Pink   

Live Strong, Be Strong

February 1-15 2012: Decisions, decisions...weighing pros and cons (post infection conundrum)

February 1-15

Decisions, decisions...weighing pros and cons (post infection conundrum)

While I continue musing over my lack of locks, I have had to concurrently decide what route to take to best manage the Cellulitis infection I have.  Information is king, and I did not feel I had enough information to decide between two equally unsavory choices.  The two main choices I had to weigh out were as follows:

Door #1: Keep the tissue expander (temporary implant that expands the chest muscles to prepare enough room for the final breast reconstruction and breast implant later this year after chemo and radiation are complete) :

Pros: this would save me two surgeries and additional infection risks from the surgeries - one surgery to remove the expander and one to insert it again should I go ahead with reconstruction later (as I would again have decide if vanity would be worth all this in the long term as additional surgeries as well as implants have ongoing risk of this and other types of infection.  The risks are low, however, I have already lived a less than 2% risk with this episode thank you very much). 

Cons:

A.    The infection could progress where it "sticks" to the expander and I would have to take it out anyway.  I would have to go through a surgery that I would need to recover from, hope no new infection crops up post surgery, continue on the heavy duty antibiotics that I am on and delay my chemo treatments.

B.    I would need to remain on my heavy duty antibiotics for 6 weeks. If the antibiotics start working, this is the conservative and safe view that has been given by Dr. A., my new infectious disease doctor, (and one of the latest additions to my medical team), and would officially delay my next chemo treatment.  This length of time on antibiotics is recommended due to the fact there is a foreign body that makes it harder and longer for antibiotics to do their thing.  Unfortunately, there is no specific test that can conclusively indicate if the infection is completely eradicated or not. Doctors in this field can only tell by visual changes to the infection site, how the patient is feeling and studies/research that indicate the high probability that the infection is managed based on the type of antibiotics, its strength and length of time on the antibiotic.

C.    I would worry about the recurrence of this type of infection throughout my chemo treatment and into the radiation reconstruction phase of this journey -- since I have only gone through one chemo treatment so far, I have 7 more treatments, radiation and the reconstruction phase to get through I have a long way to manage my fears.  I don't know about you, but this is a lot of time to maintain a high level of anxiety.

Door #2: Remove the tissue expander

Pros:

A.    The length of time that I would need to be on my heavy duty antibiotics would be lessened by a few weeks as the foreign body would have been removed

B.    I could potentially get back onto chemo treatments sooner than if I left the expander in.

C.    I would remove the concern that the tissue expander is contributing to or causing the infection in any way.

 

Cons:

A.    I would need to have another surgery now to remove the tissue expander and another one later to reinsert it if I decided to continue with reconstruction later after chemo and radiation are complete.

B.    The risk of post operative infection would be reintroduced during both surgeries.

C.    I would need to make an immediate decision and ensure surgery can be booked immediately to gain the benefit of shortening the infection recovery timeline so that I achieve the main goal of minimizing the delay to chemo therapy.       

With the information I had as of about February 1st (which would have been the date for my second chemo treatment), both these choices sucked no matter which way I looked at them.  There were three other variables that I felt needed further clarity to help me tip the scale between choices. 

1.     How was my body reacting to the antibiotics and was the infection getting better with each day on the antibiotics?

2.     What was the impact of delaying my chemo treatments by days and weeks?

3.     Could some of these activities be performed in parallel?

Well the answer to #1 was something I could get immediate feedback on as I could see that the redness of the infection seemed to be getting a little more each day and I felt a little better each day.  My plastic surgeon and the infectious disease doctors were both monitoring the progress with regular appointments and they also saw the progress.  Getting an answer to #2 and #3 proved to be a little harder to nail down as my oncologist was hard get a hold of and there seemed be a stalemate on "who's on first" (chicken and the egg syndrome).  The oncologist wanted to know how the infection was coming along and a go ahead for the plastic surgeon and the infectious disease doctor so that he could plan the next chemo treatment and these two doctors (and me) wanted to know what length of a delay would be the most detrimental to me and my treatment plan and curing the main issue - cancer. 

As I was the "piggy in the middle", I was finally able to get coordinating nurse on my side after actually reaching and talking to the radiation oncologist that I will also be dealing with later in the process (I wanted to talk to her as I needed to find out what her view was if I went into radiation, I did not have an expander, but still wanted reconstruction -- I won't belabor this discussions other than to say that there were options, but again, not great.  I will expand on them if there is a need to revisit removing the expander).  What this coordinating nurse accomplished that I and my oncologist's assistant (the jury is out on her effectiveness to date--I will need to meet her sometime to confirm my opinion of here capabilities) were not able to do was to get an answer to question #2 and question #3.

Answer to #2: It seems that the impact to a delay in chemo of three to six weeks would not be substantial as I have received one treatment and I had the bulk of the treatments yet to complete.  I am sure there is some impact, but there is no significant proof/ statistics to the contrary.

Answer to #3: If the infection improved enough (based on the plastic surgeon's and infectious disease doctor's evaluation) in the next two to three weeks, chemo could be resumed concurrently with continued antibiotic treatments.  In addition there is a handy dandy drug that could be prescribed that is proven to boost the immune system (specifically the white blood cell count) and does not contravene chemo treatments. This medication could be used in parallel with the chemo and antibiotic treatments.  The drug is really expensive (about $200 per injection with 7 injections between every -- and yes it would be another injection, but this time it is a self injection in any major muscle tissue -- not sure how I will manage this since Todd is terrified of needles and I am not sure if I can self inject yet – don’t know how druggies find the nerve to do this.  I will cross that bridge once I get to it.  I think a strong immune system outweighs this little requirement).

Now I finally fell that I had the pieces of the puzzle together to make a more, but still painful decision.  The winner is...

Door #2: The tissue expander stays!

One would think that I would be completely ecstatic about the decision and actually making one, but like everything in this journey, there are risks with every decision.  As I preach to any of my project stakeholders that will listen, if there is a known risk at any point in a project and you accept the risk, you will always live the risk at some point in the project or will need to mitigate it in one way or another--- and there is always a cost of some kind.  So these are the risks that I am accepting:

1.     Three week delay to my chemo treatment – better than anticipated due to the confirmation that we can continue with chemo concurrently with the antibiotics (since the infection seems to be under control, but we want the extra 2 weeks insurance) and the immune boosting meds (Neupogen).

2.     Infection may not be completely eradicated – both the Plastic surgeon and the infectious disease doctors are happy with how the infection is clearing up and I feel much better.  The “insurance” 2 weeks of antibiotics also makes everyone happy (also based on the fact that I am tolerating the heavy duty antibiotics fairly well so far).  The risk is back to original risk of less than 2%.  Recurrence is scary since Cellulitis can become much worse than what I experienced – can lead to other parts of your body, can become a continual problem ongoing, can lead to more extensive tissue damage, etc, etc…  So I DO NOT WANT A RECURRANCE!!!

3.     Surgery to remove expander is still present if the infection comes back – if the infection comes back, I will definitely have the tissue expander removed and will have to live through the other risks I am avoiding through this around.

4.     Emotional state – although this is probably a reasonable decision, I will have a medium-high grade of anxiety until I am through with all my treatments.  I am mentally trying to manage this fear on a daily basis and most days I win.  I will be trying different angels to belay my anxiety so that I don’t get completely paranoid and so that I don’t carry paranoia past the overall journey.  I was level headed before and I want to be that and more after this is all over.

Onwards and upwards as they say…. The decision is made and my next chemo appointment has been scheduled for February 23^rd at 3:30pm at Surrey Memorial hospital, my antibiotics are still in action with the IV pump that I wear 24/7 (for two more weeks) and the immune boosting meds are on their way (including all the financial coverage that goes with it – I am so fortunately to work for a great company like TELUS that offers a great benefits plan and that we live in a solid socialist society in Canada and BC – I believe we would be re-morgaging our house by now to cover the multitude of costs already incurred and the ones yet to come – I will muse more on this topic on future posts as this is really important for all of us to understand and appreciate as Canadian citizens).

Onto Round #2… finally

January 25-February 5, 2012: I'm molting, I'm molting....

I'm molting, I'm molting....

The Chemo instructions said that I could start losing my hair between the 2^nd to 4^th week of chemo.  To test the theory, I played with my hair for a few days prior to the 2 week mark by gently pulling it.  Day 14, and still no signs of de-foliage.  Come day 15 the telltale signs started.  All I had to do was to run my hand through my hair with very little tension, and voila, I had a hand full of hair.

I probably would have been more emotional about losing my locks, but you know getting rid of my nasty infection seemed to take some priority to the vanity of losing my hair. 

So after joking with the boys about losing my hair a few weeks earlier, the reality has settled in.  Within days (or what seemed like hours), I went from, pulling a small handful of hair out (it really just breaks off and the texture changes somewhat to a more crunchy feel-yum) to hair falling out on its own and getting everywhere--my fleece vests and jackets turned into hair magnets.  If you have seen the "Harry Potter" movies where the Whomping Willow Tree twists itself up and then vigorously and quickly shakes all its leaves off for winter - that is more or less what this hair loss adventure started to become.  I do also like the "Wizard of Oz" play on words: "I'm molting, I'm molting" instead of "I'm melting, I'm melting" (play on words courtesy of Graeme Thomson).  There are many other analogies I can use, but unfortunately only teenage movie parallels seem to come to mind -- I think I have been hanging out with the boys for far too long so I won't bore you with any more analogies for now:o)

So what to do about adorning my crown?....

Since Todd and I have been kept busy with going to Eagle Ridge Hospital twice a day as well as all the doctor’s appointments, blood work, etc, I have not been able to shop for a wig as I had originally intended.  As I have learned, wigs these days can look and feel pretty good--even better than our own hair and style, just don't get the synthetic wigs (which seems to be the advised preference) close to any heat like dishwasher steam or they will melt instead of molt:o).  I will probably still get one once I have time to get out and who knows what color and style I end up with!

While I wait to adorn my top side with a swanky wig, what to do, what to do...

I have a few knitted and sewn hats I can use that have been donated by the cancer center, but I need to get more hip than the cancer center regulation attire if I am going to be a true cancer babe.  Then wouldn't you know it, just like many other wishes I have had lately, my cancer “Jeannie” conjured up a bag full of funky scarves and hats by way of my very funky and tremendously kind neighbor Laura.  Laura came by and we had fun testing out the booty and played around with scarf designs and testing hats on their own or with a scarf under the hats.  So far my favorite is a funky grey scarf with a burgundy hat over top.  It will be fun to mix and match in the coming days and then see what we can come up with for spring and summer.  It reminds me of having to find decent clothes while I was pregnant that suited the different seasons that the pregnancy expanded.  I may not get a baby at the end of this labor, but I am hoping for the lease on life that I was always hoping to have.

The fun we are having with this part of the cancer journey has been varied.  On the first day of chemo, I pretended with the boys when they came home from school that all my hair had fallen out on the first day by hiding my hair under one of the cancer center hats.  While this rouse did not work on Iain (since he is Mr. Too Cool for His Shoes, he is too smart for me and because I did not play it up enough), however, it worked like a charm with Graeme because we all got in on the act.  Poor Graeme was distraught for a few minutes thinking that it was really true before we all gave up the ghost.  Yup lots of heavy sarcasm and dark humor in our household these days.

What has also been interesting is how to manage all the hair that is falling out.  Should I cut it short, should I shave it all off, should I just let it fall out on its own-- decisions, decisions, decisions... Well time and having hair with a mind of its own can solve many such dilemmas.  With each day that went by, the speed and quantity of hair lose was interesting and alarming.  I couldn't keep a hair appointment I made with my hairdresser, so Todd and I took matters in our own hands and Todd became my hairdresser.  He was able to produce a rather nice and fairly even bob cut after combing out what seemed like an endless amount of hair.  Voila, I now had "Hair by Todd" (this is best said with a French accent).  No sooner did I have this great bob cut, when my hair fell in droves and almost made this hair cut mute--Todd was devastated after creating his first (and probably only) hair masterpiece.  Since time, chemo nature and a well timed shower have a way of solving many dilemmas, so much hair fell out in a 24 hour period, we decided that Todd could cut off all my hair so that, at the very least, it would not get everywhere or clog our drains.  We also took the advice from Carole (my latest cancer babe friend whom I met through my Eagle Ridge Hospital IV club) to donate my fallen lox to the birds in the neighborhood for their nests--should prove to give them a nice soft nest (should they decide to take the offering).

The cutting of my hair was both very funny and emotional at the same time.  In the end, having Todd look after my hair falling needs was more personal than having a hairdresser take care of it.  Sharing these poignant moments has been important and has brought a closeness of sorts that I believe we are both in need of.

While Todd, Graeme, Iain and I are getting used to this change, I am needing to get my head around (notice the pun…:o)) what reaction I will have from everyone that has not seen me yet with this new do and especially some of the kids in “the hood”  - I don’t want to scare them away.  I think once the initial shock is over, this will all become business as usual and I can enjoy trying out different scarf, hat and wig styles.

The thing about all this hair stuff is that it will grow back later this year, unlike some of my male counterparts in the neighborhood and some of the leaders on my old Procurement team:o) - (maybe I can apply for a job there again as I might fit in better this time:o))  Yet another silver lining…

January 31, 2012: Day 21: End of round one of eight. And the winner is...

Well if there were only two opponents (Carmela vs Chemo), then round one goes to Carmela due to nausea and fatigue fighting capabilities, walking every day for the first 9 days and taking care of the home front -- although Chemo did get some points for being punctual and thorough with the hair loss.  In my opinion, beating nausea and fatigue score more points than hair loss vanity any day.

However, since we had a sneaky third appointment named "Infection", unfortunately round one goes to "Infection" with some help from chemo who compromised my immunities.  "Infection" gets added points for delaying my next chemo appointment by a currently undetermined amount of time.

So the three of us are at our respective ends of the ring until the next bell rings to continue the Chemo match…

Let's see what plays out through this intermission and get ready for the next round…

January 30 – Feb 5, 2012: A Funny Thing Happened on My Way to Being a Model ... Or Living a Chemo Fear…cont’d (started January 20, 2012)

I am now a bonified high maintenance princess - and boy have I earned it with this leg of the journey!

True to the cycle of change, I am a little bit off the ceiling after about over two weeks of getting used to the fact that I have a significant infection after just one dose of chemo death cocktail.

This is how it has played out so far after starting this episode on January 20th, 2012:

•   I have Cellulitis - a nasty and stubborn skin/tissue infection. I am coming to terms with this and need to resign myself to managing this infection.  I do keep getting reminded by the Doctors that it was nothing that I did wrong, it was just plain old dumb luck.  I just want to know how to stay clear of this going forward, but I don't seem to be getting a pure black and white answer on this either.  I am starting to think about how to use some self-healing and positive thinking thought patterns to get through this episode and all the trials yet to come to gain some control over the situation.

•   I am now on my third and most powerful IV antibiotic since January 21, 2012 (Vancomycin). The IV doses started at a 1/2 hour drip with each visit and have progressed to a 2.5 hour drip each visit with increased concentrations based on my body's ability to tolerate the stuff and the how well it is treating the infection.

•  I am part of the IV club at Eagle Ridge Hospital - I have been going to the hospital twice every day (morning and evening) with my chauffeur/caregiver/husband Todd since January 21st and I now we have reading dates each night at the hospital (he goes home for the morning visit so that he can get some real work done while the boys enjoy their freedom from us and get themselves off to bed in the evening  - since we are usually home well past their bedtime).  Then we repeat the routine bright and early the next morning.  I feel like I am back at work with these appointments that are sometimes back to back with a litany of doctor or reassessment appointments throughout. I have met a great fellow breast cancer babe (Carole) who is going through something similar (go figure that I am going to meet others in this boat at the hospital...) and who has the same great attitude and kick-it-in-the-ass outlook as I try to maintain. So always good things come from bad.

•  I have lost count of the number of pokes in my right arm (as I can’t use my left arm due to the removal of the lymph nodes through the mastectomy operation), however, I am sure it has exceeded twenty attempts. These pokes have been for blood work and regularly moving my IV site (who the hell would ever have heard me say "my IV site"...) due to the number of IV drips I am needing and due to the harshness of Vancomycin on the veins.

•  The good news is I am now a proud owner of a "Power Port".  This fantastic device has saved my right arm and poor veins.  This device is a small apparatus about the size of a quarter around (mine happens to be triangular and a flashy purple color since it is "Power Port", not just a regular Port (Portable Catheter)-- told you, I am a princess now...) and about 1/2 centimeter deep. It is inserted underneath the skin on the right side of your chest, just below the collar bone and then a tube (catheter) that is connected to it is inserted into a main and larger vein.  While this would gross me out under normal circumstances, this device has been an absolute godsend for me as it completely replaces the need for any IV's in my arm and the damage the new powerful antibiotics were doing to my veins.  This device really helps manage the twice daily IV antibiotic treatments, all the blood work I continue to have and then will be used for my Chemo treatments (which was the original purpose for installing “the Port” to begin with). All this can be done through one entry point and can be left in for as long as all my treatments continue.  Some people have them in for a year or multiple years.  I think this device has been a great use of research dollars for sure!

•  My head is definitely in the de-foliage stage now-- more details on this in a separate post...  The main theme is to keep priorities straight -- vanity vs infection, managing infection wins in my books.

•  Todd and I have had to really figure out how to manage the medical system under these circumstances (i.e. being a cancer chemo patient under complications).  I can't imagine coping and managing through this experience if I did not speak English, was not able to articulate my issues and needs, was not able to ask the right questions or able to process the variety of information given to me, or if I did not have a solid emotional and practical support structure.  Again, many things to be thankful for.  Based on the situation I am in, I have been able get the assistance from a coordination nurse (Colleen) at the cancer clinic.  Colleen has already been very helpful already -- more on this, in one of my next blog entries.

With two just over two weeks of emergency hospital visits, twice daily visits to the hospital, regular blood tests, and a litany of doctors and doctor visits, the experience is feeling very surreal where I don't recognize who's life this is. I often wonder why I need to do all this given that I went from being a healthy human being to being something less than I was.  Who would have thought that I would be part of an IV club, would pass through the emergency ward every night to get to my IV club and witness so many health issues related to a hospital's clientele.  I have heard people crying and in pain, children that are sick and upset (owwie is a word I thought I left behind me when the kids were young -- it is not happy word to hear now), convicts that go through our health care system, various injuries, code blue situations in front of my eyes, souls passing on and families dealing with and supporting all these situations.  I don't believe I am made to be around this concentration of pain and illness, however, I just might be suffering from a heightened sensitivity as I move through my own health journey.  Witnessing a ton of compassion in various degrees from the hospital and other health care staff has definitely balanced some of this for me and buoys my belief in what is good to in humans and what it is to be humane.  So here I am chronicling my adventures to attempt to keep grounded, to try to add some levity to the overall situation that I find myself in and to try to make sense of all this.

PS – my usual reference to songs and other connecting topics:

One of Coldplay's recent songs, "Us against the world" has some great lyrics that are quite poignant in general and with my current life adventure.  These are just a few snap shot lyrics that seem to strike a chord at the moment:

·         "Oh morning come bursting the clouds amen, lift off this blindfold let me see again, bring back the water let your ships roll, in my heart she (it) left a hole...

·         The tightrope that I am walking just sways in tides, the devil as he is talking with those angels eyes, and  I just want to be there when the lightning strikes and the saints go marching in…

·         Sing Slowowowowowowowow it down, through chaos as it swirls, it's us against the world

·         ...Tonight I know it all has to begin again, so whatever you do, don't let go.......If we could float away, fly up to the surface and just start again, and lift off before trouble erodes us in the rain, just erodes us, just erodes us, see roses in the rain…

·         Sing Slowowowowowowowow it down, through chaos as it swirls, it's us against the world, through chaos as it swirls, it's us against the world"

There are a variety of meanings and messages in these and the rest of the lyrics that I have chosen to truncate, but I feel that my call to action from these lyrics is to slow it down.  I will need to gain a new level of patience and acceptance of what it will take to get through this journey, this marathon of sorts.  Digging deep and loving who I was, who I am and who I will be may be in order to get through the more difficult parts of what we are and will be going through.  Finding some peace, love and strength will be some of the ammunition I will need to get through this and, I am sure, other low points on this road I am on.  I will need these and other points of strength to belay the fears I have in general and with the risks inherent with cancer treatment.  I expect I will be learning much more about life and myself as the journey continues....

January 22, 2012: A Funny Thing Happened on My Way to Being a Model Chemo Babe...OR Living a Chemo Fear cont'd (from start of adventure on January 20, 2012)

"A Funny Thing Happened on My Way to Being a Model Chemo Babe...OR Living a Chemo Fear"....And the result is...

On January 23rd, a nice, but unnamed doctor (because I was too tired to hear his name), confirmed that the infection that I have is Cellulitis.  No, this is not what movie stars have and is pictured on tabloids.  This is a relatively common, but very nasty and non-contagious skin infection that causes swelling, localized pain in the infected area and turns the skin into a funky salmon color -- how appetizing is that? Well it gets better and better.

The doctors can't confirm the actual cause, but it would only have taken a small bug (similar to a Staff or Strep type bug) to enter my system in a small compromised area (say recent surgery, scratching my mouth with a toothbrush, a blister, any of the above or something else).  Couple this with a compromised immune system and voila, you have a perfect storm to brew a Cellulitis cocktail.  So now I am on the ceiling and completely paranoid about what I might have done to get this.  It doesn't help that I seem to have a pattern for various infections from each surgery and now this (which I am currently told is not related to the previous infections--well I am going to ask more questions as I am not totally convinced yet).   The scary thing is that one can get this more than once if the circumstances present themselves and can occur at other points in one's body.  In reading more about this stuff and meeting two other live breast cancer patients in my new “IV club” (fellow recurring IV patients) that have also contracted Cellulitis (on their breast reconstruction site and both well after chemo and reconstruction - one after one year and one after four years), the possibility of recurrence is giving me the warm and fuzzies.

Enough of the what-if's and the experience of others because the current situation is far from over. 

What the doctors (and there are plenty of them that play a part in this excitement) want to see is what the effect is of the base antibiotics that I am currently on.  Things should improve, and hopefully drastically, within 48 hours, if not a bunch of next steps come into play.

The critical path (for all my project management buddies) is that we get rid of this infection and/or the tissue expander. If the tissue expander proves to be a weak link and if there is a chance that the tissue expander is contributing to this infection or is slowing down getting rid of it (or has the capability of contributing to recurrences or other complexities later), then operating to remove it will be a possible option and will increase the length of time before I can resume my chemo treatments.  The reason the tissue expander was placed at the time of surgery was because I had planned to have breast reconstruction after all the chemo and radiation was completed (yes, I am still vain in my 40’s and getting close to 50’s).  By having the tissue expander placed at the time of the mastectomy, the thought was that I would avoid another operation prior to breast reconstruction to expand the chest tissue later – well all good intentions….).  My chemo treatments cannot continue until this infection is one hundred percent gone, otherwise, I could go through the same or much, much worse once my immune system is further compromised with each subsequent chemo hit.  However, delaying the chemo treatments is problematic on two fronts -- potential impacts to effectiveness and the continued cancer risk.

I would be lying to you if I did not tell you that I am more than a little scared....

Let’s get through then next few steps before we go off the edge shall we…

To be cont’d...or in the works...

January 21, 2012: A Funny Thing Happened on My Way to Being a Model Chemo Babe...OR Living a Chemo Fear cont'd (from start of adventure on January 20, 2012)

cont'd from January 20th....

Given I had very little in the way of ammunition, I took some Advil before I tucked into bed for what I was hoping to be a good night's sleep at about 10:00pm.  I still felt like shit, but I did get some sleep.  At about 5:30am I had to get up.  This usually isn't a problem even though I do sometimes get light headed when I get up.  This time, however, getting up turned into a prolonged dizziness where I proceeded to gracefully fall to the floor.  At least that is what Todd tells me after he came to my rescue and saw that I did not hit my head and saw I was still conscious.  He still had the balls to tell me that I shouldn't be drinking so much:o). Gotta like the dark humor through this kind of stuff....

After having some tea, I went back to sleep until 9:30am.  My fever had gone down considerably and since Dr. Lee indicated that 80% of fevers at this point in treatment are not associated with an infection, I was thinking positive about the day. 

I spent most of the day in bed being cared for by the boys since all soccer games were cancelled due to the rain that was now melting all the snow away.   My temperature still fluctuated, but it was not until about 10:00pm when it looked like it was on the rise again within the "bad" zone and continued to climb for the recommended one hour waiting period.  Also, during the day, I was starting to see some redness where my left breast used to be and it was feeling a little warm.  With both these things going on, we started the procedure again with Dr. Lee (I am sure she was not having a good time with this either).

We all agreed it was time to visit emerge again. So I put on my very fashionable sweatpants, sweater, and other fashion statements that were meant to keep me warm. We put Graeme in charge, tucked the boys in bed and off Todd and I went to emerge again.  At emerge, we got the royal treatment again and breezed through registration and I was placed in another isolation room while I waited for my entourage of Doctor and nurses.  I had been placed in an isolation room the night before too.   This is again a measure to try to protect me from the plethora of hospital germs, especially in emerge.  I also got to don a face mask for additional protection.

I met Dr. Neil (did not get his last name), who seemed to be on the ball and to the point.  He did a quick check of the area in question and immediately confirmed that there was signs of infection and most likely a skin infection (ie. due to the redness and warmth as well as the pain I was feeling).  He again ordered blood work and a urine sample, but saved me from another chest X-Ray as the one the previous night came out clear.  He also did a simple ultrasound on the area and seemed a bit concerned.

Remember I said there was a poking theme, after getting a successful IV on the second try again, in comes nurse Jan who said she was the "get blood from a stone nurse".  Well I would hate see what she can do to a stone after what I went through.  In end she poked me four times to get the two good pokes she needed (one failed because she said my vein collapsed and one failed because she accidentally pulled the needle out as she sat down. It is worth noting that hers were the only needles that have left me with some bruising).  For the weekend I came away with 9 pokes where I only needed 5.  As I can only use my right arm for blood work and IVs due to the higher potential of infection and other things on left due to the lymph nodes that had been removed with the surgery, my right arm was not having too much fun with the blunders.

I digress again. The result of all this was that I was immediately placed on an antibiotic IV drip.  As the evening (well morning since it was about 2:00 on the Sunday morning) progressed, I came to understand from Dr. Neil (no last name), that I would need to come back twice per day for the next three days and the foreseeable future to get regular antibiotic IV drips. I would get evaluated at various intervals to see if the antibiotics were having the right effect.  So with my new white cell count at 1.3 (lower than the night before, but good old Dr. Neil said he would be more concerned if the levels were below .5 which seems to be a critical level), some more Tylenol in my system, an IV stub connected to my hand, we were off home to be ready to get back for my next IV shot scheduled for 10:00 am in the morning and to be repeated every 12 hours for next few days.  

Lots of fun and games, few showers and little sleep for me and my caregiver/chauffeur/husband Todd…

That concludes chapter one of "A funny thing happened...."  and the fun does not end there...