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Grrrrrrrrrrrrrr !!!

Anonymous user (not verified)

Okay . . . so we have a situation that arose this past Saturday night that has to do with a Staph infection.

At about 9:50 Saturday night, just getting ready for bed, my husband (whom I love more than I can possibly describe, as you all know by now) . . . told me that he had a fever of 101.1, obviously over the 100.4 threshhold limit the cancer care clinic warned us about.  Most nights, Terry runs a fever . . . usually, between 99. 4 to 99.7 (an occasional 100.0 or so) . . . so we've been checking it every night before bed.  So, when he passed that threshhold, we called the clinic . . . who patched us through to the oncologist on call.  They told us to drive to the ER, which we did.  They did a chest X-ray, drew blood and ran two blood cultures (which of course had to have time to "grow", riight?).  They sent us home because shortly after we were there, his temp went back down to 99.0.  All his labs (minus the usual abnormalities for someone getting chemo), looked fine . . . chalked it up to "odd", I'm guessing.

So, this morning at 12:30 a.m., someone from the ER left me a VM which I didn't get until early this morning.  They said that one of his cultures was positive for a bacteria that sometimes was due to a "contaminant" or something more.  This person said that if Terry wasn't feeling "ill", we didn't need to return to the ER, but that we should call the oncology clinic, which I did when they opened, who said we needed to get right to the ER, as the bacteria was due to a staph infection and that it could spread very quickly, as he would have to be admitted to the hospital for IV antibiotics.

So, being the diligent caregiver that I am, I called the dispatcher for the bus service (he drives City bus) and told him to have Terry call me right away.  I was at work, so I told my co-workers and my supervisor but Terry wasn't calling me back; so, I called them back and they said they had given him my message; yet, I hadn't heard from him.  They told me he wanted to "get to his next time point".  

Thus, the first reason for the "Grrrrrr" title of my post.

He ended up calling me back a few minutes later and I told him that I was leaving work after I hung up with him and heading to the house, as he would have to leave his car in the garage and we would then head to the ER.  That was all at 9:15 a.m.  

Guess where I am, as I'm writing this . . . . I am sitting here, staring at my computer screen, pounding these words into my keyboard and still no Terry.  It was 10:00 and still no Terry.  We live half an hour away.  I called the bus company back to find out where, in all this, was my husband.  They told me that he never asked for a relief driver, so I told them that he was supposed to have done that as he had to report to the ER.  So, I tried calling him twice and sent him a text message.  On my third try . . . he said, "Oh, I didn't think I had to come home right away" and then proceeded to argue with me that he only had 15 more minutes on his morning piece, so he was going to finish it up and then head home.

Thus, the 2nd reason for my Grrrrrrrrrrrrrrr title to this message.

I left work at 9:15, loaded up our emergency bag and packed up the car when I got here . . . 10:40 and still no Terry.

As I said, I love my husband more than anyone in this world and would do anything for him.  I have done "anything" for him, 10 times over; but this sort of "guy" stuff is flipping ridiculous.  Are most of you, dealing with cancer, like this?????  Honestly, what would it take for anyone like my Terry, of the male gender, to realize the sort of stress your "manliness" causes those of my gender, particularly one has to resort to computer connections to gain understanding and respect for all the crap I've done and am expected to do.  He hears what he wants to hear and, in doing all that, his "tuning me out" causes me so much undue stress.  

As I just wrote that last sentence, the on-call oncologist called me and reiterated that it would be best for us to get to the ER.  I would imagine they're expecting us to have been there by now.  I realize this isn't going to kill him in an hour . . . but, for God's sake . . . having me rush around and go through all of this, this morning and he sitting in that driver's seat of that stupid bus "finishing up his morning piece" is somewhat amusing; yet troubling that he could be so dismissive of what he was told and twisted it into the scenario he probably cooked up in that head of his because it was easier for HIM and exactly what he intended to do without any consideration for what I had to do to get to the house and prepare for what they're thinking will be an overnight hospital stay to knock this "fing" out of him before it has a chance to go "full-blown".

Okay . . . . I'm done . . . . (I THINK) . . . . 

I JUST had to vent . . . sitting here waiting for my wonderful, but stubborn husband to drive that Jeep of his into our garage, so I can then drive him yet again to the ER . . . our "home away from home" and miss a day's work (which I can't really afford to do, yet will because of our "special" love.

Thought you gals out there would find this rant better than a soap opera this morning or that novel you're reading; as I trust most of you have figured out by now that I think the world revolves around me and my issues.

I'm mostly just slightly "ticked off" at him . . . . But, seriously, I would like to know what most of you would have done.  This will be another one of those "precious" moments we laugh about when it's all over but, right now, I AM PISSED!

:)

ShadyGuy's picture
ShadyGuy
Posts: 386
Joined: Jan 2017

I say calm down. Its actually a good thing. He is spitting in the face of death and I applaud him! He has spirit and spunk. His life is a bus and by G-D he is driving it. Before my very dear friend died of lung cancer, after a very careful “safe” life,she absolutely refused to wear a seatbelt, had as many martinis as she wanted and went for long walks at night in the dark. She said in a way it was very liberating. It was her life and she was in charge and refused to be herded around. Give him a break! Love him but don’t smother him!

ShadyGuy's picture
ShadyGuy
Posts: 386
Joined: Jan 2017

Good luck. He is very lucky to have you beside him!

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3258
Joined: May 2012

I ditto Shady's sentiments. 

This is all standard fare. I have said that before. Get a note pad and jot down the following: "This is all typical."  Post on your fridge door. 

After my first infusion, I got a fever and spent three days (the weekend) on a cancer ward.  The moron hosptialists doctors (not oncologists, despite it being an oncology ward) had me on constant IV antibiotic bags while they ruled out ever bacterial infection known to medical science. I kept saying to them, "Perhaps it is low WBCs from the chemo ?"   I received so much antibiotic that I developed Red Man Sydrome; I was red as a beet, and required a week dosing of Benadryl to get over my hospital stay..

My oncologist came in Monday morning, and told them, "He was neurtopenic from the chemo. Get him to hell out of here."    Thank you !  After that, my wife and I ignored my temp. for the next five months.  I do not recommend this, but it is what we did.

Terry may lose his sense of touch (neuropathy), develop mouth sores, have his weight plummet, become unable to get out of bed, and a dozen other things.  I lost the ability to BREATH, had severe shortness of breath and at times panted like a dog in bed for oxygen.  There were times when I could not say 'yes' or 'no' on the telephone.  Those common reactions will all be normal and typical of patients on intensive chemo.  NONE will be a diaster or even really cause for alarm.  I was sleeping 17 hours a day at the end of my therapy.  I was told that I was gray colored and smelled like lighter fluid.   I recall having a family discussion with my middle school daughter after I was declared NED, and she commented that "and you don't stink like chemicals anymore."  From the mouths of babes....  More wisdom than you will find on a cancer inpatient ward.

"What Shady said."

max

Rocquie's picture
Rocquie
Posts: 828
Joined: Mar 2013

Dawn, I hope you got your husband to the hospital and that everything is fine.

My personal alarm sounded when you said staph infection and that it could spread very quickly. It happened to me and it was not pretty. I hope Terry does not experience that!

I don't blame you for being p.o.'d. There is a reason the doctors tell us to report fevers. When we do, we should be ready to follow their orders right away. 

I hope you are both fine. Please keep us posted.

Hugs,

Rocquie

 

yesyes2
Posts: 581
Joined: Jul 2009

Dawn I totally ditto what Max and Shady said.  I was pretty lucky that throughout my RCHOP I didn't run any fevers until my final round.  I remember calling my Oncologist at 10:30PM a week ofter my final with a 102.0 fever.  He actually said to me he wasn't worried as my counts were fine from the Neulasta injection, to watch the fever and if I still had it in the morning to come into the office.  By morning the fever was normal.  Never did figure out what it was but my doctor felt the ER would be more dangerouse than to wait and watch.  I really appreciated him for his sage wisdom.  I also realize that a staph infection is cause for concern.  I sort of think if he is feeling well enough to go to work, be responsible for the bus and the passengers that all will be good.

These next several months will be full of unplanned surprises, as Max pointed out.  All you can do is be there when he needs you and remember to breathe.

ShadyGuy's picture
ShadyGuy
Posts: 386
Joined: Jan 2017

i hope I did not sound unkind. Its just that I have done the “fever drill” myself. 29.9999 C you are good to go, 30.000001C its an emergency. Each time I have had my fever subside by the time I saw the doctor. Once it measured 103.xxx F. We called the emergency number. By the time we spoke to the Dr. 20  minutes later it was 99.6. I love my cancer team but some of them are simply trained to react a certain way. They always tell you to come in. They are not doctors. Then there is the liability issue. Unlike Terry, my blood was cultured negative. They took samples from my port and from my arm and chest x-rays. Terry has cultured positive and staph is very, very serious business. My only intended point is that retaining grace and composure under fire is a good survival trait That will serve him well in his struggles. Panic is bad.

Anonymous user (not verified)

Okay . . .

So . . . . first of all . . . I treasured everyone's thoughts and comments.  You may have surmised that I was, basically, "venting" yesterday whilst awaiting my Terry's delayed arrival at home.

Let me just say . . . that WE / I was not "panicking".  The Oncology / ER was doing that for us.  They, apparently, didn't know WHAT to do, as we found all that out when we finally got there.  I guess while I was waiting for Terry, and after that Oncology doc called me at home while I was waiting . . . he had been in conversation with the doc who was on call at the clinic yesterday and they discussed between the two of them their conflicting opinions with the hospital's.  I did not know anything of that until the snotty ER doc we saw questioned why we had chosen to come to the ER.  WHAT?????  We merely did what we were being told.  Apparently, the two on-call docs for our oncologist talked to the Urgent Care facility the ER wanted us to go to and they didn't want us going to the cancer care clinic as our doctor was out of the office.  For God's sake . . . . is this what we're going to have to be subjected to each and every time OUR doctor is out of the office?  Surely, they should have contingency plans for patients when that happens that make sense for everyone. 

From what we were told yesterday, the reason a "staph" infection was discussed was because ONE of the two draws they run to determine a bacterial infection was "contaminated".  THEY screwed up but didn't bother to explain that BOTH would have to be "positive" to determine with accuracy there was a staph infection present.  So, all they ended up doing was running another set of simultaneous blood draws and are waiting/expecting for both of them to be negative this time. 

My angst yesterday was mainly with my husband . . . who . . . . NEVER should have decided all on his own to disregard the fact that I was leaving work when I had to in order to get home, gather our things for an overnight stay, make phone calls to the kids to ask one of them to take care of some things for us at the house before we left, and try and streamline things at the ER so we wouldn't have to be delayed even more than we were after just being there this past Saturday.  Anyone who has read my posts should be able to gather that I admire and respect him more than anyone could as he is truly one of a kind with courage and stamina beyond imagination when facing health challenges.  He just does things and goes about doing them without sharing his thoughts and is reluctant to share his feelings about any of it; which only compounds my frustration in that I am left to guess what he is thinking or planning on doing about any of it.  As hard as I've tried . . . I can only read so much of his mind and try and give him what he needs. 

The dynamic of our marriage and our relationship of 40+ years is unique and definitely one that many can't understand.  I don't even understand how it works after this long; so I can only imagine what others may think of it.  BUT, we ended up (as I thought we would) laughing about much of yesterday and working it all out.  Lessons learned, for sure, by both of us.

That fever threshhold they set of 100.4 is one the clinic needs to set.  I get that.  BUT, for heaven's sake . . . they should add "in conjunction" with symptoms A, B or C and if none of those are present, simply tell someone to monitor the situation for 24 hours and if it doesn't resolve or if A, B or C develops, THEN make the trip to an emergency facility. 

No one understands a "staph" infection more than I.  Last year, I developed cellulitis in one of my fingers (one of my favorites, BTW) . . . used for traffic "signals" among other things let's say . . . . wink, wink . . . . after, apparently, breaking the skin microscopically changing a broken light bulb.  My finger blackened within hours and the infection had started down into my hand.  I had to have a pic line for 4 days and have IV antibiotics each of those days to clear the infection.  I could have lost my finger, my hand, my arm OR my life, I was told.  I know how fast this crap can spread.  In Terry's case, I questioned (on Saturday night) the need to make the trip into the ER as he was feeling fine and didn't have any other symptoms . . . but we followed directions after the oncologist I talked to told us to go in.  Then, yesterday morning, when the hospital told us to call our doctor in the morning (unless he was feeling ill), and follow THEIR instructions . . . the nurse telling me we would have to get into the ER and plan on staying overnight . . . . after I had already been at work for a bit . . . having to make plans here so others would understand the situation, and having to travel a half hour home to gather our things and wait for Terry so we wouldn't have two cars at the hospital overnight . . . well, let's just say it isn't as easy as many would think it would be to do all that and make it as easy on Terry as I could . . . arranging things at the hospital, calling our daughter to take care of those things at the house, etc.) . . . Trust me.  Yesterday, I was not panicking . . . just doing what we were told to do.  But that doesn't just happen because the fairies take care of everything.  This stuff all had to be done and my husband in his alter universe he lives sometimes . . . doesn't always stop to consider any of that OR hear what I'm telling him.  He cooks up, in his head, a plan he would RATHER follow, than the one that HAS to be followed.  I liken it to other examples of similar things we've faced in the past with his ill health.  Suffice to say, this wasn't the first rodeo with any of this kind of thing; BUT it WAS the first one that involved lymphoma, chemotherapy and oncologists. 

I wish I could write more; but I suspect others are weary of hearing about this whole mess and I have to get back to work. 

I was basically just venting yesterday, feeling so incredibly fed up with conflicting medical opinions over something that seemed could have been easily coordinated and discussed with doctors before involving either of us AND dealing with my stubborn, wonderful husband.

Thought you would all like to know the latest . . . . . in a nutshell . . . much-a-do-about-nothing that NEVER should have escalated to the point it did.

Again . . . thank you for your patience and understanding and for your shared concerns!  All are, as always, so appreciated.

Talk again soon . . . Hit #3 is scheduled for July 5th . . . and, unless all "H" breaks loose again . . . we should be able to stay on schedule.

Have a good afternoon!

Dawn

ShadyGuy's picture
ShadyGuy
Posts: 386
Joined: Jan 2017

”The fog of war”, a situation in which calmer heads prevail. So glad to hear your good news! Have a great rest of your day.

Anonymous user (not verified)

Thanks, my friend.  Good thing I've managed to keep my sense of humor, right?  If all of this weren't so tragic . . . parts of it would actually be funny.

I'm learning as we go along . . . that those doctors are no different than the rest of us.  The only difference is the Dr. in front of their names.

Have a good night.

Talk again soon.

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