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....
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