Part 3: Hospital Stay, Day Five...

My friend, Dory, hearing I would be spending the weekend in the hospital, contacted me to see if I'd like a visit on Saturday.  Oh yes!  You'd better believe it! 

I got up with new purpose on Saturday, showered, put on normal clothes (including shoes), and waited for Dory's arrival.  I checked with my nurse to see if there was anywhere other than my room where we could meet.  Not that Dory wouldn't have been fine with meeting in my room, but I was ready to spread my wings and visit some other corner of the hospital after being given permission to do so the day before.   I was told there was a "Friends and Family waiting room" that we could use.  Great!  I met my friend at the elevator and we went to this little "kitchenette" room to spend an hour or so.  Dory brought us milkshakes (a heavenly treat after nearly a week of hospital food), and at some point, she broke out some cards and we started playing - what, I don't remember.  Thankful she had thought of cards, I was nearly giddy to be doing something - anything - so ordinary.

At some point in the visit, I decided to make a trip back to my room to get some things (one item being a cup of ice water for me).   On my way back to the room where Dory was waiting for me, I had to pass through two different sets of double doors.  As I approached the first set, a motion detector started two doors opening in opposite directions in front of me.  Now, I don't know if you've ever had this happen to you, but as I walked (maybe a little too quickly) the soft rubbery toe of my right shoe grabbed onto the highly waxed tile floor, pitching me slightly forward.  When this has happened to me before, I've sort of jerked my arms out a bit to keep my balance, and then a tad embarrassed, regained my footing and simply carried on. But this time, I suspect because of the opening doors ahead of me (and the one coming toward me that I needed to avoid), and maybe because my hands were full, and maybe because I was walking too fast and happy...  I fell.  To the floor.  On one knee, and possibly my posterior.  I don't remember exactly as I was up nearly as quickly as I went down.  But the nurses saw it and came running.  

While certainly embarrassed at my clumsiness, I didn't think it was a big deal.  I mentioned that I spilled some water and I think I even said, "I'll get some paper towels", to which a nurse replied, "We'll take care of it."  They were only concerned that I was okay.  I assured them I was fine, and thinking nothing more of it, I happily made my way back to my friend who was waiting for me to return.  I told her what happened, laughed off some of my embarrassment, and I think I was beginning to deal cards when my nurse and technician came into the room very somber.  They explained that they would have to report the fall, and check me over to make sure I wasn't hurt.  They communicated that they felt terrible about it, but it would mean that I would need to go back to my room.  And that I would have to have alarms turned on on my bed and recliner.  I'm still stunned remembering that moment.  I had just gotten freedom to leave my hospital room in some meaningful fashion, and the freedom was being snatched away over a stumble that could have happened to anybody!  I started to make the argument that controlling my fall (rather than tumbling into a moving door which would have surely injured me), and picking myself up as ably as I did was clearly evidence of my being able bodied.  It was my shoe that was the problem, not me.  The issue was so ridiculously obvious, I was having trouble taking it all seriously.  In disbelief, I even joked, "What are you going to do if I don't comply - kick me out?  Please do!"   I was just incredulous.  And heart broken.

Even though they felt sympathetic, and they knew the stumble had not been a reflection of my ability to walk, they had to comply with hospital policy.  This is the point where I learned that a patient's "fall risk" is a compilation of things, some of those things having little to nothing at all to do with any individual's actual fall risk factors.  In the end, determining a patient's "fall risk" is about statistics and liability.  Statistical factors, as well as real factors (of which I had none at that point) are entered into a computer and an algorithm takes the decision out of nurses' hands to assess an individual for his or her personal risk factors for falling.   Things like medicines and various signs of instability (these I can appreciate), age, and even sex are typed into the computer.   I have no idea if certain statistics are true, but even accepting for the sake of argument that say, statistically woman perhaps fall more than men (though without knowing why, the statistic has very little value), that statistic has nothing to do with me as an individual.  It has nothing to do with my personal "fall risk" and everything to with the hospital's liability risk. 

After Dory left, I sat in my room for a couple of hours on an alarm pad that would sound if I got up.  To say I was indignant would be an understatement.  As I stewed over the whole thing I became increasing angry over the stupidity and wrongness of the situation.  And not just for me.  I was incredulous that a hospital expects patients to trust the professionals it hires to care for them, but the same hospital will not trust those same professionals to asses a patient and make reasonable conclusions about something like this - after hours (in my case, DAYS) of observation of a patient.  Nurses that I had literally trusted with my life all week, were stripped of the ability to make a decision that would respect my actual abilities and mobility - that they could clearly see were fine.  That a hospital would adopt a policy to allow an algorithm to make such a decision and turn a trusted relationship into potentially an adversarial one was just ludicrous to me. 

This might be a good time to mention that on Monday night after my emergency surgery, and at least part of Tuesday, there was an alarm on my bed.  I was weak and on medicines and at times could barely keep my eyes open.  I was hooked up to various things, and I couldn't get up and walk anywhere without someone unhooking me from something attached to the wall (a heart monitor, I believe).  There was no thought during that time that the alarm was for anything other than my protection.  I didn't resent it.  I understood its purpose.

But once I was unhooked from the heart monitor, I demonstrated numerous times that I could take the IV pole to the bathroom and manage perfectly fine.  In fact, it wasn't until they took me off the heart monitor that I began to question the need for the bed alarm.  At that point, I had become strong enough, and the staff had had time to see that I was stable.  I don't remember asking more than once before the bed alarm was turned off for me.  The alarm wasn't an issue to me when it was needed, and it seemed to be an easy decision for them to remove it when I became stronger and it was no longer needed.

Anyway, after stewing about my new confinement for a couple of hours, I unplugged the chair alarm I had been resentfully sitting on and walked myself out to the nurses' station and asked if there was an actual human being I could speak to about the situation.  To be clear, these were my nurse and tech who felt bad about the whole thing, and who wished there was a way around the policy.  They appeared happy that I wanted to talk to someone higher up.  They said they would request this person come and talk with me.  With new purpose, I went back to my room to put some of my thoughts down on paper while I waited for this person to arrive.  A half hour or so later, I heard someone(s) coming into my room.  My back was to the door, but I began to greet my visitor(s) as I pushed my chair back from a little table I was sitting at.  Imagine my shock when, as I turned around, I saw a police officer standing in my room. Beside the police officer was the person who I was told would come to speak with me.  I don't remember what her title was, so here on out, she will be known as the administrator.

Now...  while I was incredulous to see the police officer, it only took me a few seconds to realize she was there in case some sort of protection was needed.  I guess.  Or was her intimidating presence the sole reason for her to be there?  The administrator referred to the police officer as "her friend" that she always brought along to this kind of meeting.  Feeling patronized that that was her explanation of a police officer's presence in my room, and I'm sure stifling an eyeroll, I concluded I just had to "be the adult" in this whole situation.  I stated that I was surprised to see a police officer, and said her presence made me nervous (my voice was now shaking a bit and I figured it was better to just be open about my discomfort), but in spite of that I pressed to explain my issue.  Actually, just before this, I asked the administrator who was a young woman and towered over me if we could both have a seat.  She hesitated, but when I sat down and motioned to the couch where she could sit, she did so - even though she didn't look like she really wanted to.  What I had moments before I envisioned as an opportunity to reason with someone in authority, and bring a little humanity into a situation that was being controlled by an impersonal policy and a computer algorithm, was suddenly feeling very unfriendly.  But I pressed on.

The administrator seemed nervous, too, from what I could tell.  I'm in no position to know how often a police officer is needed in a situation like this, but in my estimation her presence in the room was a complete negative in this case.  Afterwards I wondered, Could the officer not have been outside the door waiting for me to - do what, I don't know?!?  But just in case the administrator really did need her help.  Like if somehow this 64 year-old woman who is supposedly too weak or unstable to walk around freely, is strong enough to inflict harm on a nearly 6 ft tall athletically built young woman.  

I'm sorry.  It gets really hard for me to not get sarcastic as I recall all of this.

Interestingly, about 20 minutes in (though I have no idea, really, how much time had passed), the administrator evidently felt safe enough that she dismissed the police officer.  The atmosphere changed immediately.  I know I instantly relaxed, and the administrator appeared to let down some of her guard.  At some point, the charge nurse came in, and we actually had some friendly discussion amongst the three of us.   At some point, when we were in this more relaxed state, and I brought up issues of privacy - which I felt more keenly because I had a male nurse and tech that night, the administrator actually began to suggest "work arounds" to the problem.  Things that could give me some autonomy and privacy (for things like going to the bathroom, for crying out loud).  That I had to even ask for that in my able-bodied state troubles me - still.  While, on some level, I appreciated the suggested work-arounds, they really only made a mockery of the whole thing.  That they were offered, highlighted that there was a problem with the systematic, impersonal way in which patients are identified as fall risks.  In the moment, it felt like something, though.  But when I discovered later that I would have to negotiate these work-arounds with each new nurse/tech combo, and they were not compelled (probably didn't even have the authority) to negotiate anything regarding my movement, I realized the "work-arounds" were meaningless offerings.  I was on my on to manage the situation as best as I could. 

Really, while my complaints were freely voiced, it seemed the whole thing was a pointless exercise.  While never giving a hint at being persuaded by any of my words, the administrator finally camped out on she herself feeling helpless because of the hospital policy.  How convenient.  She could sympathize with me, but she had no power to change the situation.  And she didn't seem the least bit troubled by it.   In fact, she seemed to see it as her duty to keep to the script.

The message was loud and clear.  No one who actually matters in the relationship of patient/caregiver has any autonomy anymore.  The nurses said they had no autonomy, the administrator said she had no autonomy.  It's as if they all had memorized the script.  It seems I surrendered my autonomy when I presently myself for surgery on Monday night.  Lawyers hold the cards, and in this case a patient suffers for it.  Up to this point, the suffering felt is mostly emotional and mental, but it was suffering, nonetheless.  It was a maddening situation.  A patient, who on one hand was considered well enough to go home, is caught in an algorithm that decides she must be confined to bed or chair with alarms - not because she fell from mobility or other health issues, but because she fell from a stupid choice in footwear.  But there is no blank for explaining things like that.   And there is no way to redeem oneself from this decision.  The decision is made, and it stays made until you leave.  I asked, and that's what I was told.

And for a bit of irony...   When I described what caused the fall to whoever would listen, almost every nurse or technician (and even a different administrator) admitted they have tripped similarly, and recognized how easily the fall happened.  Just looking at the highly polished floors, and the footwear the staff wears, no one had to tell me for me to know that this sort of tripping happens on the job, but I sure appreciated the sense of solidarity it felt like in the moment (even if none of that matter in the case of my "confinement").

And I haven't even mentioned how my health began to suffer between Friday and Monday.  The stress from earlier in the week, waiting day after day expecting to be released, started to look like a cake walk.

To be continued...

Part 2: Hospital Stay, Days Three and Four...

I wish I could perfectly piece together the timeline of events of my hospital stay, but days of the same things, over and over eventually just blur some of the details together.  I believe it was on Thursday (the day after I had been told I was fine to go home), I began to develop high blood pressure.  Not off-the-chart high at that point, but significantly higher blood pressure than I'd ever experienced before. 

At this point, I was also still being visited daily by various doctors from the oncology department and infectious diseases.  Sometimes the doctors would change, sometimes it would be a PA.  Technicians were in and out of my room numerous times a day to draw blood.  I remember being told repeatedly that the staph infection wasn't due to anything I had done.  On one hand, I was relieved to hear that, but on the other hand I very much wished it was something I could control, because I would do whatever I could to make sure I didn't end up in the hospital with another infection.  Without coming right out and saying it, I believe they were basically telling me staph was very likely present when the port and catheter was installed.  I had my suspicions from medical articles I'd read online by this point.  My oncology surgeon told me I was the first patient she'd ever had that developed a port infection.  The other oncologists and support staff told me it definitely happens. I appreciated the honesty. I don't doubt I was my surgeon's first infection case, but it didn't help to hear that.  One only has to do a little reading online to understand it's not exactly a rare occurrence.  I wasn't interested in casting blame.  I just never wanted to experience this scenario again if I could help it.

I'd like to note that on Thursday the hospitalist stopped in again, and I took the opportunity to let him know how disappointing it had been that he had spoken to me so confidently of my leaving, and then never got back to me.  To his credit, he apologized. He was kind and humble, and I took some solace in that, but I felt he needed to know the way he handled that situation had been quite a blow to me, and in my estimation there was no good reason for it to have happened.  At the very least, I deserved to hear from him (even if through a nurse) that I would not be able to leave that day.

I remember on Thursday, there was continued talk by doctors who dropped in that the staph infection seemed to have cleared, but they wanted to run more tests to be sure before releasing me. I know one night I developed shivers and shakes again, along with a fever, so it's evidently not as clear cut as one blood test to prove staph is out of one's system.   It also seemed to me that it was on Wednesday that I began to notice that one-by-one, I was being unhooked from different infused fluids and medicines, and injectable antibiotics began to be administered.  I enjoyed the freedom of not having to be unhooked from things just to move around.

On Thursday I noticed the stand still holding bags of fluids and medicines was on the other side of the room.  It was also on Thursday that talk of sending me home with an IV and a plan to have 24-hour unfused antibiotic via medicine balls was agreed to.  It was that or give myself injections of antibiotics every 8 hours.  While I was familiar with the continual infusion of medicine via these balls from after my breast cancer surgery, I also knew I kind of hated them.  But when it came down to it, I hated more the idea of giving myself (or even worse, my husband giving me) injections three times a day.   So the balls won out.  

On my way to getting a mid-line IV put in...

Early on Friday I had a mid-line IV put in (in order to receive the antibiotic from the medicine ball system), and I could see I was finally truly ready to leave.  There was nothing more that needed doing.  I was feeling pretty good for the most part. I was just waiting...

While weary of the whole affair, I maintained a good attitude for a long while, 

trying to find ways to humor myself...

The problem, I was told on Thursday, was finding a home health care company which they could coordinate my discharge from the hospital with a visit from a nurse to set me up with the infusion therapy balls.  I'm not even sure I should be writing this here, but I was told that while, medically, there was no reason to keep me in the hospital, they couldn't release me until they had the home health care situation set up.  It sounded crazy to me.  But I hung onto hope that that solution was just hours away.  

I held onto that thought all day Thursday, and into Friday.   On Friday afternoon I was finally told that a home health care nurse could not come to my home until the following Monday.  That meant that I would be spending the weekend in the hospital.

After days of so much hope and anticipation of leaving, that was a devastating blow.   After a moment of shock, I began to negotiate the terms of my staying in the hospital for essentially three more days (the rest of Friday - through whatever time I left on Monday).   Could I wear my normal clothing?  Yes.   Could I leave the floor I was on?  Yes, with someone accompanying me.  Could I go outside as long as I stayed on the hospital campus?   Yes.   I knew this last one was a stretch, but I had to ask...  Could I actually leave the hospital campus, if I wasn't gone for very long?   Uh... no.  I couldn't be considered as inpatient and leave the hospital on my own at the same time.  That made sense - even if the situation as a whole made none to me.  I decided to be glad for the freedom to wear normal clothing and made some plans to have visitors the next day.

I will also note that my blood pressure continued to be an issue, and as the week progressed my body began hanging onto fluids.  A situation I've never before encountered, but I intuited that since I felt well otherwise, the best thing was for me to move as much as possible, and I was thankful I could at least take walks.  I did everything I could to busy myself - cleaning/straightening my room, making the bed, cleaning the bathroom...  Any little thing I could do to move from Thursday through Friday, I did.  

While spending all this time in the hospital (after being told I was well enough to go home) was not exactly pleasant, I did try to make the best of the situation.  All the staff were very kind, and most encounters were fairly cheerful - even when different people would come to take blood draws, or take x-rays.  Evidently, with fluid filling my body, they wanted to make sure my lungs were clear and organs were functioning normally.  Nevermind that being home and going about my normal life would have surely prevented all of this extra fluid and high blood pressure.  No one seemed to know quite why it was happening.  As if the stress of the situation wasn't reason enough?

Now might be a good time to mention that Greg had come down with a terrible cold early in the week, and except for possibly returning on Tuesday, he had not been at the hospital all week - both because he felt very sick, and with my low immunity I certainly didn't need to be exposed to his germs.  In spite of the stress of staying in a hospital while being told I was well enough go to home...  In spite of a miserably uncomfortable bed to sleep in...  In spite of everything, up to this point I actually considered these extra few days away from his cold were perhaps not completely a bad thing.  Really, most of the time that I was stuck at the hospital I kept a pretty decent attitude.  Admirable, in fact.  

All that said, even with the constant in and out of doctors, nurses and technicians, in spite of the kindness of everyone, and even being thankful for a room with a great view where I could watch all the comings and goings of pretty much anyone entering or leaving the hospital.  In spite of it all, it was a very lonely week and I looked forward to seeing Greg on Saturday morning when he brought me some clothes to get me through three more days.

The large RV above ended up scraping the lamp post the man in red was trying to warn the driver away from.

After some help from a few people, the RV got straightened out again.

And soon headed out of the parking lot:

only to return a few minutes later! 

~~~~~

Yep.  Lots of activity and coming and going happened while I was just waiting...

Grounds keepers of various sorts

School buses dropped off and picked up school children - presumably for appointments?  Treatments of some sort?  

That was a sobering sight.

And all day long people in red shirts valeted people's cars back and forth.  They all looked like retirees, and based on the energy they seemed to have, I concluded they must enjoy the job:

And when I was really lucky I got treated to some beautiful sunsets:

To be continued...

Part 1: Life doesn't always go according to plan...

It's hard to believe I started this post nearly a month ago.  I thought I was getting back into the blogging saddle, but little did I know what was right around the corner.  

It all started on Sunday, August 13th.  It was a beautiful day with our whole family together.  One of the important items on the agenda was to buzz my hair.  I had been missing having all our grown kids together, and they responded admirably to my request to get together.  And middle son's girlfriend agreed to cut my hair off. 

I was told (and read online) to expect hair to begin shedding approximately 2 weeks after my first chemo treatment.  I saw losing my hair as something of a rite of passage during chemo, and didn't view it as all that traumatic of an experience. That said, I appreciate that it is for many people.  We're all different.  Being practical on so many levels, I knew I wanted to be proactive with a plan to buzz it before the shedding began to make a mess.  I couldn't have timed things more perfectly, as the morning of the scheduled hair cut, my between-chin-and-shoulder-length hair starting shedding like crazy.   I was so glad for that.  While I didn't want to deal with the mess of my hair shedding randomly, or experience the emotional toll of my hair thinning, I did want to experience on some level the shedding.  I didn't think it would feel exactly real if I cut if all off before it actually started to come out on its own.   I'm not sure if excited is the right word, but I was pretty pleased that the plan to buzz and the serious shedding happened on the same day.  I felt really lucky somehow.  

If that sounds weird, all I can say is...  in an experience that has a lot of scary and bad stuff in it, I try to take hold of the good where I can find it; watching my hair fill up the garbage container, and not the shower drain, felt like a win.  

It was a good day in all respects.  While I didn't feel all that emotional, I will admit to feeling a tad nervous before the cutting commenced.  But commence it finally did, everyone taking a turn with the hair clippers, my kids trying to encourage me that I could rock the no hair look, wearing caps and scarves.  Young and/or thin women may look cute, even beautiful, sporting their brave bald heads, but I am neither and I was pretty sure I'd feel less self conscious with a wig when out in public.  That said, I sure did appreciate my kids' confidence in me.  But that evening after everyone had gone, looking at myself from all angles in a mirror, I made a mental note to go get the wig I had picked out a week or so earlier.  The day I picked it out (out of a number I tried on), I couldn't quite make the commitment.  That Sunday evening, I decided there was no need to wait any longer to bring it home.  For what it's worth, I discovered I have a huge "Stork Bite" birthmark on the nape of my head.  Imagine, if you never shave your hair off, you may just never know what is lurking under there...

As Sunday came to a close, I began to have a bit of pain at the surgery site on my neck where an infusion port and catheter had been surgically installed about three weeks prior.  While my neck hurt, I didn't get too worried until Monday when I could see a clear sign of infection.  At that point, I didn't waste any time calling the surgeon, and I was given an appointment at the end of the day.  Relieved to be gotten in, hubs and I made the thirty-minute drive to the surgeon's office to get it checked out.  The surgeon immediately diagnosed an infection, but in hopes to save the port, a plan was made for me to start an oral antibiotic that night, and the next day come back to the hospital for an antibiotic infusion.  Feeling really glad I had gotten myself to the doctor quickly, I was relieved this was the plan.  We were so relieved and feeling good about the situation, we stopped on the way home to grab supper.

It was probably an hour and a half later, after getting back home and dropping me off, Greg made a run to the pharmacy to pick up the antibiotic.  Just minutes after he left, I began to feel chilled, and before he could return I began  experiencing uncontrollable shivers and shakes.  Never in my life have I had such wicked shivering and shaking.  I didn't know a body could do that.  Even a low-grade fever is dangerous for someone on chemo, so I kept taking my temperature. At first there was nothing notable, but within a few minutes, the thermometer read 100.4.  Normally, that's not all that exciting of a fever, but after starting chemo I had been instructed to call with a temperature of anything over 100.  My instructions were 100.1 to be precise.   Being home alone, not sure how long Greg would be gone, I started to get worried at how fast a serious fever might grow.  And how long I could tolerate the insane shivering and shaking before I had a muscle spasm.  

I took Tylenol and called my oncologist, and I think he had my surgeon call me.  It was decided that we needed to go straight to the hospital, which is on the same campus as the cancer center - where I had been just a few hours earlier.  The surgeon told me she would meet me in the ER, and she would remove the infusion port that night.  A half hour later we were at the hospital and I was checking in at the ER desk, and within another hour, I was being wheeled into surgery.  The speed at which it all happened was amazing.  I don't know what it's like where you live, but around here, visits to the ER have become legendary for how long one waits to be seen.  And even after you've been seen, sometimes you're lucky to get a room.  It is not uncommon (I've witnessed twice now) to see patients in beds in the hallways.

I suppose because of my doctor's orders, I was on the short list and I was grateful they got me checked in pronto.  Port and catheter were removed, and sometime before midnight on August 14th I was recovering in a beautiful room on the cancer floor of the hospital.  It took until the next day (Tuesday) to confirm I had a staph infection - it was all along the catheter and port.  And then by Wednesday I was told it looked like the infused antibiotics had cleared it up in my system already.  While I was weak, and very tired from the surgery and medicines, no doubt, I thought I was the luckiest gal alive to have a scary infection clear so quickly.

Early Wednesday afternoon, a hospitalist visited my room and told me I could expect to go home later that day.  My middle son happened to be visiting me at the time, and I was glad I had a witness to (and another participant in) the conversation.  Son (who just happened to be in the area that day) made plans to hang around and take me home when I was discharged - we were told it could take a couple of hours for all that to happen.  The hospitalist said he'd run the decision by the infectious disease doctor and oncologist, but he spoke so confidently about me leaving, I and son began making plans to get me out of there.  Son ran some errands, I got myself at least mentally ready to leave - nearly giddy with relief at the thought of going home.

Two hours passed, and when a nurse came into my room again, I eagerly asked her when I'd be leaving and she told me flatly, "You're not leaving today."   I told her a doctor had told me earlier that I could expect to leave in a couple of hours.  Doubtful, she checked the computer.  There was nothing there to indicate anything of the sort.

Confused that I would be left hanging like that, with clearly no intention of that doctor communicating anything different than he had told me earlier, I was stunned and understandably disappointed.   Not seeing any other choice but to accept it, I settled in for another night in the hospital, thinking and hoping I'd be leaving the next day.

This began possibly the most surreal experience of my life. 

To be continued...

A sweet bouquet of fun and pretty flowers from Peggy B.

One down, three to go...

I probably have no business sharing my experience so early in my chemotherapy, but hopefully I've gotten through my worst days with my first round, and I thought I'd record the experience and some solutions I've already found to be helpful.

To be honest, I don't normally post so much personal medical experience here, but I have found others' sharing to be invaluable as I have gone through this.  Even if someone reading these posts never experiences cancer first hand, reading others' experiences can be helpful in knowing how to be supportive to friends and family who may go through these things.  People may not open up about what they're experiencing because they don't want to complain.  Or some symptoms are just plain embarrassing.  No need to probe someone to open up when they don't want to, but I suggest assuming they're doing a fair amount of suffering in silence if they don't elaborate.  

To be absolutely clear, this is only my experience.  Everyone's chemo is selected and scheduled for their specific cancer, and is dosed according to their weight and tolerance.  While I hope I have some helpful thoughts here, I can only write about my experience and how my body reacts.  I stated (to my doctor) from at the outset, my biggest fears are nausea and vomiting, and any amount of lasting peripheral neuropathy.

The black things on my hands and feet are cold therapy mittens and socks to try to ward off peripheral neuropathy.  There is some evidence (mostly within clinical settings) that this helps, so I figured it was worth trying.  I purchased my set and extra cooling inserts off Amazon.  The danger of nerve damage grows with each infusion, so I'll hold off reporting anything further about these until the end. 

***I've come back here to report that after finishing four chemo infusions (over a period of a little less than three months), I did not develop any peripheral neuropathy.  I've heard that an acquaintance who had the same medicine and protocol that I did developed neuropathy and that would have been before these mits and socks were available.   Would I have developed neuropathy if I hadn't worn these?  I have no way of knowing, but I'm going to go out on a limb and say I think the cost of these, and the little bit of discomfort I had wearing them (through only one of the drug's infusion) was worth it.   I would absolutely do it again if I had to do it over.

My chemo regimen is Taxotere and Cytoxan every 21 days for 4 rounds.   If all goes well, I'll hopefully be finishing up the first week in October.   In addition to those two drugs, I take an oral steroid (Dexamethasone) the day before, then it is infused again directly prior to my chemo, and the day after chemo I take the oral steroid again.  Also infused into me prior to the chemotherapy is Aloxi - a strong anti-nausea medicine.  At home, I have Compazine and/or Zofran to take for nausea if needed.  

The infusion went without a hitch.  I had no reactions as they ran the different medicines into me, and five hours later I was packing my bag and heading out.  It wasn't until I got outside I realized I was lightheaded.  I found out later there is alcohol in at least one of the medicines, and while I probably could have driven, I was glad Hub had taken me and was driving us home.  It was a long day.

I didn't learn until I showed up with no sleep the night before that the steroids I was on were responsible for my sleepless night.  I didn't feel anxious, I just couldn't sleep for more than a couple of little cat naps.  I figured I'd catch up on my sleep while the infusion was going, but there was much too much going on, education happening, and possibly because of the kindness of everyone who entered my room, the day of the infusion I had a general sense of well being that lasted through most of the rest of the day.

The day after my first infusion, I did find myself easily agitated, but knowing it was the steroid having its way with me helped me get a grip - eventually.  I felt a little jittery the second day, but I felt well enough to go to a Bible study at a friend's house just down the road.  The other things that affected me pretty quickly was that my throat started to feel sore, my tastebuds started acting up, and my mouth became seriously uncomfortable.  I didn't expect this to happen so quickly, but fortunately, I was prepared.  At the first symptom that felt like thrush might be setting in, I started rinsing my mouth every few hours with either TheraBreath (mild mint) mouthwash, or a mixture of water, salt and baking soda.  The ratio I used was 1/4 tsp salt, 1/4 tsp baking soda, 2 cups water.  I tried a stronger concoction as per my doctor's instructions, but I found it irritating.  I think using these two mouthwashes helped stave off my beginning chemo mouth from turning into something awful.   To be honest, I didn't feel like eating for several days after the infusion, it was so unpleasant, but hunger finally forced me to put something in my stomach each day.  Almost a week later, while my tastebuds are still wonky, the uncomfortableness in my mouth is manageable.  The occasional sugar free TheraBreath dry mouth lozenges and sugar free Jolly Ranchers help too.

Other things that happened...  On day 3 post chemo, my legs became very painful and achy, and fatigue set in.  I also developed some pretty serious gastrointestinal distress.  Whew.  Chemo belly may sound cute, but it's misery that lingers.  And changes by the day.  I haven't figured out quite how to keep that from happening, but now that it seems to have settled down a bit, I have it as a sort of goal to try.  I'm just not sure it's preventable, because chemo is known to mess with the gut's microbiome.  Oh, and to add insult to injury there's an ugly spotty, random "rash" on my torso.  I'm guessing it's nothing serious - it doesn't itch or hurt - but I noticed tonight on the info they gave me, they do want to know about rashes, so I'll be letting them know tomorrow.   I did feel well enough to go to church today.  I know eventually I'll probably be laying low as I progress through my rounds of chemo, so as I feel like it, I want to be present for things like church, and well...  just normal stuff.  Goodness, after the months of diagnostic tests, biopsies, surgeries, now chemo... I want some normal in my life!

Something that is surprising me, and I think it's worth mentioning is, even though some of the symptoms may not seem to be any worse than one might experience in other scenarios in one's life, I have found that fear is very present and ominous while in the thick of the discomforts.  We're all familiar with achy bones when having the flu, and who hasn't experienced gastrointestinal distress, just as examples?    But the fact that these symptoms are produced by having infused toxins into one's body holds the potential for a sobering amount of worry.  Worry that permanent damage could be happening.  Worry that each infusion is going to cause greater discomfort and pain as the sessions are repeated.  Can I do this over and over?   And ultimately, worry that one can go through this and cancer can still reoccur.  It also doesn't help that multiple symptoms are showing up at the same time, whereas in the normal course of common illnesses, we don't typically deal with multiple difficult symptoms all together.  None of this is to garner sympathy.   Believe me, I'm good on that count.  It's truly to help anyone who hasn't experienced this to "get inside the head" for just a bit of one who is. 

I am so thankful to be going through this at a time when doctors know better how to manage side effects. I am thankful for all who've gone through it before me to pave the way and share their experience. I am thankful that I only have to do this 4 times, instead of 6 or 8 or 12 times!  Even in the moments of fear, overall I am thankful, both for what is, and what isn't.

I would be remiss if I didn't give huge kudos to the staff at the infusion center.  And my oncologist and his nurse.  He makes it his practice for him and/or his nurse practitioner to visit each of his patients in the infusion center - when they get infusions on one of his days at this location. And the nurses that attended to me were so kind and helpful.  Last Monday was an "educational" day, so the rest of my visits will be a little shorter, and may be quieter.  It's a nice place, where everyone has a separate "room" closed off with a curtain.  Something this introvert truly appreciates.   The only negative thing was someone across the hall from me had their TV on so loud it was pretty disturbing.  I don't know why they don't give each room a headset for TV watching.   While I surely won't benefit, I'm going to make the suggestion.   I ended up putting my ear buds in my ears and calling a friend for a good part of the stay.  

So that's Round 1 down.  Three to go.  

Oh... and did I mention...  Hubs has gall bladder surgery scheduled tomorrow.  We're a pair, aren't we?   Middle son is taking him and bringing him home, and fortunately, since I seem to be feeling better, I ought to be able to manage things around here while he's down for a bit.  

Prayers appreciated!

Long time friend, Lorraine, who recently lost her husband, 

sent me such beautiful, happy daisies!

Back in the saddle...

I have started this post so many times in the last week.  So much has gone on since I was last here.  Catching up would be impossible, but I am eager to get back to blogging and visiting my bloggy friends again.  It may not be the smoothest comeback as I've got some stuff ahead still, but I'm going to just jump back in the saddle and see where the trail leads.

Sweet flowers from Becky B., a friend who's also experienced breast cancer, 

While the first 3 weeks or so after surgery were the roughest thing I've physically and mentally had to go through to date, the last 3 weeks things grew progressively better.  The horrible nerve pain eventually settled down and I could finally relax into the more familiar discomfort of skin and muscles doing their healing thing.  Last Sunday I finally made it back to church, and it felt so good to be there.  There is still a lot of healing to do, but I have been feeling more and more myself as the weeks have ticked by - well, until earlier this week when I needed another small surgery.

Let me backtrack a bit...

From the beginning, my cancer has been  considered "early caught", and only moderately aggressive.  While more things were found after surgery, and some cancer cells were more aggressive than first thought, the prognosis was (and still is) great.  With a mastectomy, and not believing there was lymph node involvement, the chance of recurrence in the next 10 years was originally thought to be between 5 and 8%.  I'd gladly take those odds and a few hundred dollars to the poker table - if I played poker.  Which I don't.  But still...  not being much of a gambler, with those numbers, I was seriously wondering why my medical oncologist would still be talking to me about taking hormone therapy pills with potentially nasty side effects for the next 5 -10 years.  "No thank you", were the only words that made sense to me.  That was in May.

After my surgery in mid-June, I was told I was a candidate for having the Oncotype DX test run on my tumor(s?) to determine how likely my cancer is to recur, and how likely my cancer would benefit from chemotherapy.  Because, the after-surgery biopsy found lymph node involvement (micrometastases, to be precise), I was beginning to not feel so cocky about my recurrence risk, and was very open to having this test run.  About a month after surgery, I had the results.

It turns out my chances of recurrence are a lot higher than 5-8%.  While the number is an estimate, seeing (in the middle square) I actually have approximately a 22% risk of recurrence in nine years, - even if I agree to, and can tolerate, the years' long hormone treatment my oncologist still wants me to consider - I became an easy sell for chemotherapy.

Actually, my oncologist wasn't pushy (possibly because I wasn't looking like I'd be easily pushed into hormone therapy in May), he did think, with this new information, chemo was a good idea.  Like many women (and a number of men, no doubt) with early caught breast cancer, it came down to making a decision that I could live with if cancer did recur later.  While seeing a possibly 22% chance of recurrence was startling, it certainly made a hard decision easier to make.

So...  last Tuesday, I walked back into the outpatient surgery center and submitted myself to having an infusion port installed.  I am a difficult "stick" at best, and the doctor encouraged using a port, so I good naturedly agreed to it. 

Four sore days later, I am kind of regretting the port, but I remain hopeful the soreness will eventually abate.  At the moment, coughing hurts.  Laughing hurts.  Standing up hurts, sitting down hurts.  Even my chest hurts again.  Some nerves have been reawakened, and I am not happy about that.  Monday is my first chemotherapy infusion, so I will take it for its first run through then.  I hope I'll see the benefits of an infusion port at that time, and will be glad I agreed to this thing.

For the next twelve weeks, if all goes according to plan, I will have an infusion approximately every 21 days.  I hope to feel reasonably good for most of that time; I'm bracing for being wiped out by the end of it.  I have high hopes I'll be in here posting somewhat regularly again.  While I most definitely want to post about just regular life stuff, I also still have the thought that I want to write about some of the experiences I went through during testing, diagnosing, and even the upcoming chemo experience.  Lots of trauma has happened.  But lots of good things have happened, too.   Whatever I share, however I share, my telling of it will not likely be linear.  But you've probably figured that out already.

I talked about this being a ride I wanted to climb out of in an earlier post.  After having the infusion port installed, I was wanting off again - BIG time.  This past week I've wanted to give the cancer right back.  I'm not made for marathons, be they physical races, or mental trials.  This has been all of that.  I don't know where the stamina comes from to keep moving forward through it, but when you get a cancer diagnosis, you find it somewhere.  One friend kindly told me I was "so brave", to which I could only reply (perhaps even a little mystified by it myself), "I don't really have a choice".  I felt kind of bad later, worried that my friend may have thought I didn't appreciate her generous words of encouragement.  They actually were hugely encouraging, but honestly...  it really is a matter of digging deep and finding the resolve.  I think that all of us have that capacity.  Some people depend on their strong constitutions. I like to think I have one, but faith is ultimately my bulwark.  

From a text I wrote to a group of friends in early July:

"While the nerve pain I've experienced with my bilateral mastectomy has been brutal at times, the meals, visits, texts, cards and phone calls have been so much more than a blessing.  The personal, human contact friends have extended to me have lessened my suffering.  These things lifted me from suffering to hope in these last two and a half weeks - over and over again.

I am so thankful for an early-caught cancer.  For ever-modernizing cancer-detecting  equipment.  I am also thankful to be living in a time where most insurance companies are required to "make women whole" again after breast cancer surgery - giving great latitude for what that means for different women.  

I am also thankful for friends, and for faith in God - who has so much higher purposes for us than intact bodies, and freedom from pain.  While my hope and goal is to get pain free, I keep in mind that that is secondary to whatever purpose there may be for me in this experience."

Gorgeous hydrangea blooms from Amy H.