Full disclosure here. My sole intent for sharing these details of my experience is simple. I hope to help someone else avoid what happened to me.
To briefly recap Chapter 1 and Chapter 2 , this summer (our first living full-time on the farm) found me loving living here and farming full-time, but thinking, thinking, thinking about everything that needed to be done, and running, running, running trying to do it all. Somewhere in there I first stopped sleeping through the night (which is highly irregular for me) and then I even began having mild night sweats.
While at my primary care physician's office for a check-up, which I have every 6 months 'rain or shine' because I have so many post-cancer long-term medical concerns (some little, some big) that are generically called 'late effects' from cancer therapies, she asked if I had been having any 'night sweats'. Well, gosh, I don't ever remember her asking me that before, ever! Even though I had thought my night sweats were odd but so mild that I might be able to 'get away' with not mentioning them at this appointment (NO, no, no - big mistake!! - don't hold back, don't do that, ever! - YES, always mention any new symptom that is out of the ordinary for you!). After a thorough Q&A session, she and I together decided to 'watch and wait' since these night sweats were mild (i.e., not soaking my pajamas or sheets), of recent onset (only about 2 weeks, not months and months) and except for the other new development of difficulty sleeping through the night, I was actually feeling well. I left her office with a clear charge that I should call her if anything changed.
Wham-bam!! Change did not take long at all to happen. :-(
That night after first falling asleep and then waking up an hour or so later, wide awake with my mind racing as I have recently become accustomed to happening, I got up to walk through the house. Before I took 10 steps (I was still in our bedroom), for some reason I rubbed one of my arms, hmm maybe I do that all the time anyhow, never noticing anything out of the ordinary. However, this time, I about shot through the ceiling with pain in my upper right arm. When I came back down and cleared my senses, I rubbed my arm again, yes, it was screaming in pain when I touched it, and this time I could feel a lump, a rather large lump actually, perhaps the size of a small egg.
Wow, where did that come from all of a sudden and what could that possibly be???? Somehow I got back to sleep, after all, the morning would bring a very busy day. My husband and I had to finish cleaning more garlic for our last farmers' market of the week that afternoon. I had to help get our stand set up at the market (leaving my husband to staff the table by himself) before I left to go pick up our daughter-in-law at the airport and then help her get ready for a weekend retreat with some friends before making dinner after we all got back home to the farm. Whew!
My wildest hope was that this odd pain and lump would just disappear over the day - I know that was optimistic, but I was WAY too busy to pay much attention to it anyhow. However, I became aware that I was 'fading' all day long, even if I could somehow compensate in a way that my arm did not hurt and maybe, maybe, maybe, hopefully I didn't have a fever.
By the time I got to bed, I just fell into bed in my clothes, too tired to put on my pajamas and also too tired to find the thermometer. No this pain did not go away today - sigh.......not that I really expected it to do so. Yes, my arm still hurt like crazy when I touched that odd lump. However, this time when I woke up in the middle of the night I had a 'flash' of what could be happening and knew there would be no more wishful thinking, no more delay no matter how busy the following day was already scheduled to be. The 'distress signal' would go up at 8 AM when my doctor's office began taking calls, even before my daughter-in-law would have left with her friends.
In a nutshell, women who have had breast cancer surgery that has removed many lymph nodes from the armpit (called a full lymph node dissection) on the same side of the body as the cancer was found in the breast are at very high risk of developing both lymphedema and infections in that arm. My first breast surgeon sat me down in 1984 to warn me about the dangers of these infections, grabbing my left hand and telling me that he could "win the cancer war and still lose me in a side skirmish to an infection."
He proceeded to tell me with tears in his eyes that such an occurrence happened to someone he knew who had insisted on pruning her roses after her breast cancer surgery and lymph node dissection without using good protective gloves, was poked by a thorn, developed an infection in her hand that quickly spread up her arm then into her bloodstream because she did not have a full functioning lymphatic system in that arm to help fight and contain it, and then she quickly died, pure and simple. (Wham-bam, I added that thought myself just now.)
Those words and those tears made a strong and lasting impression on me. I remember every detail of that conversation like it was yesterday. I have been fortunate to never have any hint of lymphedema develop in either arm after each breast cancer surgery, even with all the air traveling I have done over the past 15+ years. In addition, I have been meticulous about reducing risk for an infection by trying diligently to not injure my hands or arms since then. I try to always remember to wear good garden gloves when working outside and also in the barn, making the trek into the house to wash any hint of an abrasion or cut thoroughly. I wear long-sleeve shirts to avoid scratches and insect bites even on most of those hot hot summer days, and I also often use awful bug spray to reduce the risk of insect and spider bites when working in the fields.
I am meticulous in the kitchen with knives and other sharp utensils and only rarely use that mandoline for grating hard cheese, which I swear has a scheming mind of its own and tries to scrape my fingers! I bought myself a better rolling suitcase that was not so hard on my arms to pull, and I really really do try to remember to not be 'helpful' by lifting heavy objects (including my roller bag into the overhead bin on the airplane). Hmmmm, maybe I am not remembering enough here, as I can now hear several conversations in my memory with our garlic helper this past July about just how heavy those tubs of garlic were as they were carried from the field back to the barn ("yes, yes, I can help you, I can do this", says Diana).
I was on the phone at exactly 8 AM and my doctor had personally called me back by 8:04. I was in her office by 9:30, in the light of her office it was obvious my arm was red and swollen with the large lump no longer clearly visible, and I had a fever. She told me that I very likely had an infection within the skin of my arm called cellulitis, often caused by an insect or spider bite (we were now into that horrific mosquito outbreak that happened in SE Michigan this past summer), and that it was far enough advanced and I was at such high risk for the infection quickly developing further that I needed to head to the emergency room for intravenous antibiotics as soon as possible. She said I could go home to get my husband, but I was to tell him that he was not to let me get frustrated and walk out like I did last March (long story that I probably didn't blog about!), with a 'look' that said 'I mean it'.
Yikes! I worked so many years in the intensive care units that I knew all about the 'worse case scenarios' of systemic infections, plus I had the warning from my first surgeon burned into my DNA so I fully understood what my doctor was saying, what she was not saying, and what I would be doing for the next day, at least.
To try to shorten this up a bit, the upshot was that I spent 24 hours in the emergency room as my infection did not respond to the first 4 doses of Plan A of IV antibiotic and was clearly spreading. On to Plan B, which is a stronger antibiotic. Intermittent with all of this were multiple ultrasounds of that painful lump in my arm to try to assess just what that lump was (a blood clot?, abscess?, swollen lymph node?, tumor?). If that second antibiotic did not work, then it would on to Plan C, which was the least desirable because there would be no oral form of that antibiotic to ultimately switch over to.
As soon as it was apparent that we were on to Plan B, antibiotic #2, I was promptly admitted to the hospital versus continuing with the ER protocol for cellulitis. Thankfully, with the second dose of the second antibiotic, the redness began to recede (my arm was marked at regular intervals with magic markers, using various colors and patterns and initials to follow the course of the infection) and most interestingly, I slept off and on that second night without any night sweats. At the end of the 3rd day, I was able to be sent home on the oral equivalent of this antibiotic (clindamycin) with the infection clearly receding.
It is still unclear what the trigger was for this infection. There was no obvious sign of injury or insect bite. Several doctors said the two weeks of night sweats that I had prior to this infection becoming clinically evident would not be typical of cellulitis, that this type of infection usually manifests very quickly. (However, the graduate student currently living with us for a few months recently said, with fondness :-), that 'everything in this house is atypical!'). Since these night sweats have not recurred at all since the resolution of my infection, in spite of several medical opinions to the contrary, I will believe there was a connection, that my body was slowly fighting an infection secondary to some unperceived injury and ultimately was overwhelmed without a fully present and functioning lymphatic system.
My message(s) here? The lesson(s) that I hope will be helpful to others right now?
1) If you have had lymph nodes removed (and this can be done with other cancer surgeries, too, in addition to breast cancer), know that you are vulnerable and at high risk of developing lymphedema and infections that can quickly spread to become serious and even deadly.
2) Know the precautions you should adopt into your lifestyle (even burn into your own DNA) to prevent lymphedema. If you already have lymphedema, find help to best treat it and control the symptoms. Know that any sign of an infection in an affected limb could be serious and call your doctor promptly.
3) Be vigilant! I told several people treating me while in the ER and hospital that in spite of what my admitting card said, my middle name was actually was 'Vigilant'. I was paying attention to myself and to them, and I would ask questions, add more information, and even correct them if I thought that was appropriate to optimize my care while shooting for the best possible outcome here.
4) If you are a newly diagnosed breast cancer patient, read, read, read about options for surgery including lymph node surgery (single node sampling versus the full lymph node dissection techniques). Be very cautious about opting for full lymph node dissection since a recent large study has showed no survival advantage with this invasive technique that clearly has multiple known side effects that can compromise both health and quality of life (I wrote about this previously on my blog).
5) This is so obvious that I almost did not think to mention it. If you do not have a primary care doctor, or do not have one that you trust as a 'partner' for your medical care, please find one as soon as possible. My doctor called the ER ahead of my arrival, told them everything they needed to know to be ready to swing into immediate action, told them all precautions needed for me, and basically had them ready for me. Besides her telling me that I 'could not leave the ER', all of her meticulous attention to medical detail plus caring about keeping me a 'survivor' may have saved my life.
I have already had one farmer friend tell me she now knows she needs to be paying more attention to the lymphedema in her arm that has resulted from her breast cancer surgery (yes, yes, yes! to all of you reading who are cancer survivors out there in the blogosphere with lymph nodes removed, no matter what type of cancer surgery you have had).
I have had one of the smartest dietitians (RD) I know tell me she had no idea about the risks involved from breast cancer surgery in which the lymph nodes are removed. (To all RDs - are those of you out there also in the blogo-sphere paying attention? Are you telling your breast cancer survivors to use extra caution when using knives or other sharp implements in the kitchen? Are you reminding them to use extra care not to burn themselves when cooking or washing dishes or handling hot dishes, pots, or pans?)
Well, it would be glib to sign off with a simple 'all's well that ends well'.
Wow..................Yes, this was a 'wham-bam' experience and could have ended much differently. I guess The Universe got my attention with the ultimate message to 'slow down'. Hello! I hear you, I get it, I will listen, I will let this message burn into my DNA like my first surgeon's message to be vigilant about the care of my hands and arms. Cancer survivorship is 'tricky business', it is not 'back to normal', and it is definitely not clear-cut medicine. In fact, I think it would be fair to say that all cancer survivors likely fall outside the box into an 'atypical' category as both a patient and with life. :-)
I will also follow with Chapter 4, reflecting with my own lessons here, going back to being more philosophical. Again, it will take me a while to both pull my thoughts together and find the time to put 'pen to paper', using an old-fashioned term. I hope what I wrote today however is helpful to someone, even one person, right now.
"Cultivate your life - you are what you grow - inch by inch, row by row" (and sometimes I need these words and lessons repeated!)
Diana Dyer, MS, RD