Friday, June 26, 2015


What a long week it has been.  Yes, I am still in the hospital. After getting their best people on it...(kind of like an episode of House) they have determined what I have.  It is called Pneumocystosis or PCP. It is a kind of fungus caused pneumonia that attacks immune suppressed people.When my new oncologist heard what it was, she grimmaced in a concerning way.  If your doctor is grimmacing at your diagnosis after all these years of practice, you know it must be bad.   It is most commonly found among those who have AIDS..but occasionally people undergoing chemo.  It is very serious...left untreated 100% of people die.  However, with treatment, which will take a while, it can be cured.  

So I will be staying here a bit longer.  I am getting quite stir crazy.  On top of that the menu never changes.  It is kind of like eating breakfast, lunch and dinner at Denny's every single day....only not nearly as good.  That along with the fact that the meds they are giving me to fight this infection make me nauseous...I am back to that nauseous but super hungry but nothing looks or tastes good thing.  I swear I am so sick of food and my need to eat it.  Ugh...I hate food.

I have very little energy.  When I am in bed I feel kind of fine, but walking down the hall, I realize I am not fine.  Sometimes I cannot hold a conversation without pausing for breath between words.  (Kind of like Stevie in Malcolm in the Middle).  Last night I was eating a banana and my jaws got exhausted trying to chew it...I had to stop to let the burn go away then I could chew again.  Now that's fatigue!!!

The nurse staff here are mostly very nice.  Some are more fun than others, some are more down to business, but that's OK.  I have to be on IV antibiotic/fungal for 7 full days and then I can go home and take it in pill form.  So that is what is keeping me here.  I may be able to go home on Monday.  I hope so. 

Sunday, June 21, 2015

I Told You I Was Sick...

Have you ever tried to tell people something was wrong, but they wouldn't listen?  After a few times, you might begin to second guess yourself.  You might begin to wonder if you are just being a baby or paranoid.  You might begin to wonder if you really are as hysterical as they are treating you.   With that comes a fear...what if THEY are right?  Then you look like a hypochondriac, or a spaz, or overly dramatic.  People might think you are crying wolf and will never take you seriously again.

This has been a traumatic week for me to say the least.  I felt horrible all week, plagued with fevers, body nerve pain, a cough, headaches....  After going to the ER on Monday and having them tell me they could find nothing, then going into my oncologist on Tuesday and having him show no concern  I was beginning to question myself.

After the episode with my Oncologist I was distraught.  Not only was I horribly sick, but I just lost my doctor and had nowhere to go.  I cried that whole crying from the depths of my soul.  I was even surprised at my reaction.  On Wednesday I was still crying but angry.  I called my Oncologist's office to talk to him before he left on vacation for 2 weeks. just don't do that to a patient, and I felt that he and I needed to kind of patch things up so I am not just left hanging until he got back.  Being as emotional as I was, I asked his nurse to print off my last 3 blog posts and show them to him so he could know where I was coming from....then  have him call me.

Well, he called back at the end of the day, and he did apologize, but it kind of felt like his mother was making him do it. He even insisted that nobody had done anything wrong. He seemed very preoccupied with the idea that I actually had a blog documenting my experience and mentioned a couple of times that the information I was sharing was very personal.  He told me he had been angry, but that we would continue treatments and discuss how to proceed when he got back in 2 weeks.  While I appreciated the apology, I wasn't sold on him anymore.  Some people are grumpy people who you come to know need to be handled gently or a healthy distance kept....but some people are what I call Pit Bulls.  People who seem very nice, but then turn and "maul" you in one surprising incident.   The unpredictable, yet potentially volatile nature of a Pit Bull is something I avoid. My former oncologist, I have determined, is a Pit Bull.

As the week progressed I did find another oncologist, but couldn't get an appointment until the following Tuesday...that was on Wednesday.  Now I found myself feeling horribly and frighteningly sick and I didn't have a doctor I could trust, and I still didn't know how to deal with all that was happening.  I was still spiking a fever of around 101, I had headaches, I was nauseous, and I had this hacking cough, my body hurt,  but nobody seemed to think any of that was a problem.  So I just endured and kept throwing medicine at it hoping something would work.  The fever was worrying me the most, but my oncologist had barked out that it was just a drug induced fever in our LAST conversation.  I wasn't convinced...I was worried...I began to doubt myself.

I woke up each morning at about 4am feeling horrible and crying.  Finally on Friday I had had enough.  Either I was going to be checking into a Hospital, or into a Psych ward that day.  I told Ron when he woke up and he was on it, but how?  How does one go about getting checked into a hospital when you have no doctor?  We went to the ER already...they sent me home with a shoulder shrug.  So I began making phone calls to find someone to give me some advice, or who could write the orders.  Eventually I got a hold of my original surgeon and she worked it out for me to meet with my new oncologist that afternoon, in hopes that a hospital visit might be avoided.

I like this new oncologist...she seems to listen to me.  She was concerned about my fever and a little about the cough.  We talked for a while about new treatment ideas, then she said she wanted to do some blood tests, etc.  Then I broke down and told her I just want to be admitted to the hospital.  I can't do this anymore and I just need a couple days of someone else chasing my misery...someone who knows what they're doing.  She said .. OK lets get you checked in.  Just like that we went to the hospital and I had a new temporary residence.

Now when I mentioned I wanted to go to the hospital, I just wanted a couple of days.  In a moment of reprieve from my misery the next day, I mentioned the idea of going home.  They didn't laugh in my face, but told me I am way too sick for that.  So here I am on Sunday night with no end in sight.  They have done a gozillion blood draws, urine tests.  I've had an echocardiogram and x-rays and CAT scans of my lungs.  I have spoken to many doctors...pulmonologists, oncologists, infectious disease specialist.  Two days later we still don't know what the problem is.  Pneumonia, Valley Fever, Staph, possible bad chemo reaction (I'll say) etc. have been suggested, but no conclusion. They have even taken note of my mosquito bites and pet chickens.  My CAT scans show that both lungs are cloudy all over, but mostly in the upper portion. They have me hooked up with their best antibiotics and anti-fungals and all the meds I want...if I want.  I believe I am in good hands and we will get this one figured out.

So tomorrow I will go in for what is called a bronchoalveolar lavage.  It is this procedure that makes me think of some of the techniques they use in Guantanimo, where they put tubes down my throat into my lungs and squirt fluid in, then they collect the fluid and run tests on it to see what is in there.  I am a bit frightened.  I will be under a light anesthesia...twilight they call it, and although it will be distressing, I am told I won't remember it.  Hmmm....Ever choke on a little bit of water???  So if you are dealing with a traumatic procedure that makes you resist and cough while they are trying to do it, and you don't remember it when it is over...were you still traumatized???  I don't know, but I am a bit nervous...scratch that...scared. At this point...I'm ready to tell them anything they want to know.

So that's the scoop.  I told you I was sick.  I don't get much pleasure from saying it, but I am glad I did what I felt needed to be done.  Oh...things would have progressed badly this weekend even if I hadn't insisted on being checked.  I am pretty sure I eventually would have been admitted through the Emergency Room at some point. 

So...  I know that friends and family will probably read this and be concerned, and may even try to contact me.  Right now, I need rest...something I am having a hard time getting...did I mention insomnia???  OH...forgot that...I also have a bit of insomnia...not great for a body needing some rest to heal.  I need to sleep whenever I can. I am sure you understand.  I appreciate all the prayers and good vibes being sent my way.  I will try to update as I learn anything. 

Wednesday, June 17, 2015

My Doctor Said..."You are done with chemo"...

That's what he said yesterday... "You are done with chemo."  I said, "What do you mean?"  He said something to the effect of... you won't be finishing your chemotherapy, you can't handle it mentally.  That's what I heard anyway.

Oh, yesterday when I went into my appointment, I was angry...I was sooo terribly angry.   The night before, Monday night, I had spent the evening in the emergency room.  Monday evening I began to have a fever, and one thing I know about chemo is that fevers are bad.  I really think I had a fever on and off all weekend.  I took my temperature on Friday and it was about 99.5.  I had been taking all kinds of anti-inflamatories which often lower fevers, so 99.5 left me a bit alerted...since my temp normally hangs around about 97.    When I called the on-call doctor on Saturday, he didn't seem too concerned about my measly fever.   So I let it go...I don't want them thinking I'm some hypochondriac you know.  As far as my pain was concerned, he told me the only thing I could do was go to the Emergency room for assessment, otherwise keep taking the 4 year old your doctor on Monday if you feel the need... have a nice day!

So I endured the weekend as the pain seemed to be decreasing a bit in a come and go fashion.  On Monday morning I put in a call to the triage nurse at my doctors office, thinking surely she would give me better instructions on how to deal with my misery...and give me the one thing I knew was working...perhaps something like a NEW bottle of Vicodin...  When she called me back a few hours later on Monday, she listened to me and basically told me those are the typical side effects of Taxol and then she didn't give me any Vicodin, but instead prescribed me some anti-inflammatory.  I knew the moment she prescribed it, it would not work.

I understand now that a new law went into effect at the beginning of the year where doctors cannot call in narcotics to pharmacies...I guess there has to be a paper script.  However, on Monday, when the nurse failed to prescribe me a suitable pain killer, and then told me that is just the side effects of Taxol, I was truly terrified...more than I was when I was just winging that pain over the weekend.  I thought she was telling me that I was just going to have to deal with it, and I couldn't imagine 3 more treatments where I would have to endure such torture without medications...especially considering I was telling them what worked.

Monday night came and I took her prescribed NSAID.  I thought, "well, I might as well give it a chance...maybe it will work without the narcotics."  So I took it and waited.  I don't know if it helped, but I know my temperature kept rising that night.  Soon it was at 100, then 100.4 (the magic call-the-doctor-number), then 101.  I didn't really know what to do.  I had already called in twice and was feeling a bit like a baby about all this.  (Maybe I'm just pathetically wimpy?)  But finally my anxiety got the best of me and at about 7:00 pm I called the on-call doctor.  He hadn't called back by 8:00 so I called again and he finally called.  I think it was the same guy from Saturday, but I am not sure.  Once again he told me the only solution was to go to the emergency room.

You know...I'm not really one of those emergency room drama people.  I don't really want to spend a long evening in the emergency room...EVER!!  So the question is...since I was thinking nobody was going to do much for me...  suffer at home for the next 4 or so hours...or suffer in a emergency waiting room for 4 or so hours, only to be assessed and sent home.  I decided suffering is suffering, and they may be able to help me in the emergency Ron and I went.

This was a good night for such a thing.  I was seen right away...something that never happens in an ER.  They put a mask on my face to keep all the hospital germs off me and wheeled me back.  After asking me a bunch of questions they got started on urine tests, blood tests and hooked me up to some drips.  They told me they were going to give me some morphine and I said, "No,  I don't want morphine..." but the nurse kindly explained why I did  want morphine and I said..."OK".    By the time I was ready to go home, they offered me one more dose of morphine and I didn't even hesitate...LOL!  Really, I didn't love the feeling of the morphine its kind of a bad/good feeling to me, but it did take away any pain and anxiety I was feeling.  In fact, it was the most pain free and normal I had felt in months.  All of their tests came back with no detectable reason for my fever, so...  they sent me home at about midnight.  My fever was down and I slept fairly well that night.

When I went into my doctor's office on Tuesday, I was just so angry.  As I drove there I realized my anger could work against me and that the "ripping into" I wanted to give him, should be rethought.  I prayed for the ability to control my anger and to communicate in a way that would be beneficial without offending, and took a number of deep breaths.

Before I see the doctor, there is a nurse who takes me back and weighs me and takes my vitals. She is that same nurse who seemed surprised when I told her I was terribly sick from the last treatments.  As I went back with her and she began to make small talk, I just tried to keep my frustration in check.  Unfortunately, she kept asking me how my weekend was and how I felt.  At first I told her I felt really bad, and that I was so very angry about it that I didn't want to talk about it, as I began to cry.  She didn't just leave it there and I opened up, crying and ranting (as quietly as one can do that while crying) about the weekend.  She informed the doctor and he came in ready to hear it.

He said, "Start from the beginning."  So I did and explained it all to him.  Now in the past my Oncologist has been extremely patient and kind and compassionate with me.  However, when he told me that I called on the weekend and there was nothing that could be done, I ripped back at him, "I SHOULD HAVE HAD SOMETHING BEFORE THIS EVER GOT STARTED."  At that moment the expression on his face turned defensive and he told me, you are in the 99th percentile for reactions like this and then he said, "Your chemo is done."  Shocked, I said, "What do you mean?"  And he told me I can't handle it and I'm done.

Now you might have thought I would have stood up and shook his hand, clicked my heels together and left the room like George Banks after he lost his job at the bank...but I didn't.  I sat there shocked.  Thinking I had offended him and he's bagging my treatment.  I found myself apologizing and practically begging him to continue my treatment, explaining that given the proper medications and instructions, I could handle it.  We discussed this for a while to no avail.  He told me he was going to be out of the office the next week and that we could discuss things in 2 weeks when he got back.  As I left he handed me a prescription for Vicodin.  I left his office distraught.  I sat in my car crying uncontrollably.  I went home and did more of the same.........

Monday, June 15, 2015

Warning!... Serious Rant Coming...

Ok...  So yesterday I posted about the misery I was feeling from my Taxol chemo treatment on Tuesday.  The pain was horrific to say the least...unlike anything I have ever experienced in my life.  I have had wisdom teeth extracted with subsequent dry sockets, ingrown toenails, given birth naturally, smashed big toes with very heavy objects, been stung by a stingray...these are among my list of the most miserable pain I have ever experienced, but nothing compares to the pain I experienced a couple of days after my first Taxol treatment.

4 years ago, Sarah had 4 wisdom teeth extracted.  They gave her going home instructions and a prescription for 20 Vicodin for pain.  I was appalled at how easily they give out these narcotics to kids for such a thing. 20 Vicodin...really?  She never really needed any.  She took 1/2 of one just to see what it was like, otherwise Advil was fine.

I had 2 surgeries in March, and they gave me a prescription for Norco...which is like Vicodin.  40 pills, I never filled I never needed it.  Advil, once again was sufficient.

Ron had his teeth worked on a few weeks ago and they gave him a prescription for Percocet.  He took a couple over the course of a few days and that was all. they say that once we are done with a prescription, we should throw away the remaining.  In fact it is against the law to use someone else's prescription drugs.  But I didn't throw them away.  I still had Sarah's Vicodin from 4 years ago sitting in my freezer.  There have been when I smashed my big toe with a lodgepole bed...that I have taken one.  That's why I kept them, all the while knowing that I am not supposed to take them...because they weren't prescribed to me.

I know there is a big drug addiction problem with these medications...however not in my home.  What makes me crazy is:

1.  My doctor never warned me that Taxol would produce such immense pain.  I was expecting some bone and joint aches and pains, etc...  But there is no preparing for this kind of pain.

2. They didn't so much as say take a little ibuprofen or Tylenol for the pain. Much less send me home with a prescription for something that would actually work.

3. When the pain finally did reach a level beyond my ability to cope, I had to choose a 4 year old bottle of Vicodin in hopes of relief.

4. When I called in to the doctor on-call the next day, he offered me nothing, except to go to the emergency room, because he's not about to prescribe me a narcotic medication.

5.  Today I called my doctor's office to talk to the triage nurse.  She told me this was just typical of the treatment, almost like she expected me to just suck it up and endure.  She did call in prescription for Diclofenac another NSAID...for mild to moderate pain.  Really???!!!

Tomorrow I have a followup appointment with my doctor, and I feel like ripping into him.  They hand out Vicodin like candy to teenagers getting wisdom teeth pulled, yet for something that they know is excruciating, they hesitate to prescribe something that will work.  I feel like they think I am some kind of junkie begging for my next hit.
This makes me so angry.  So forget the advice they give you to throw out those old medicines, forget expiration dates, forget the laws that say you should not take other people's prescription medications.   I can't imagine if I had left such misery in the hands of the medical community.  I thank God I had sense to keep it on hand....and by the way...4 year old Vicodin still works!!

Sunday, June 14, 2015

Treatment #5...A whole new ballgame!

So, the doctor ordered a week off from my chemotherapy treatments.  It was wonderful.  I felt like garbage most of the time, (It takes a while for those "medicines" to clear one's system) however it was decreasing in intensity.  It was nice to gradually feel more normal as the week progressed.  A very generous friend offered me and Ron the use of her brand new cabin in Pine for the weekend, and we took her up on it.  If I felt very well right now I would tell you all about that weekend and her beautiful cabin, but suffice it to say it was a much needed and appreciated weekend.  As much as I never actually felt very well for very long, I just kept thinking how grateful I was that another dose of that AC treatment had not been added on.  I cannot tell you how happy I am to have that part of my life over for good.  That stuff is a beast!

So come last Tuesday, I felt almost back to normal and was feeling ...I think a bit over confident...that the next round of 4 treatments of Taxol would much easier.  I was excited to have no more nausea....or at least significantly less of it.  I've read many experiences and was under the impression that Taxol would be a piece of cake compared to the A/C.

So on Tuesday, I went in with a good attitude and they hooked me up to a new cancer fighting drug.  The whole process took about 6 hours including the Dr. visit, blood tests and infusion.  They put a whole lot of drugs in you before they actually give you the Taxol.  The pre-drugs made me sleepy so I slept most of the time, while my mom watched a couple of movies. One thing I noticed is that I had cramps in my abdomen and I was sweating profusely while receiving the infusion.  They watch pretty closely for allergic reactions to this stuff, but didn't seem concerned about the sweating, so I just slept and sweat away.  When I was done, I felt a bit groggy, but OK.

The next day, I felt pretty good.  In fact I felt really good.  The Dex, a steroid, that they  give you before the infusion is credited for that.  It really gives you energy and makes you feel good.  So I was optimistic that this was going to be pretty easy.  Until Thursday... About halfway through Thursday, Taxol began to show it's true colors, and all I can think is SERIOUSLY????!!! Why didn't the doctor warn me of this??  Why didn't he give me prescriptions for super narcotics for this?  At least tell me to take Ibuprofen for a few days or something.

Truly the pain is something nothing I have ever experienced.  Well maybe, but not for so long.  Kind of like being in labor for days, while a little elf kicks you in the crotch to randomly inflict shooting pains as well.  That was on Friday the shooting pains were everywhere and excruciating...even my teeth on occasion would get a shot of pain.  I didn't quite know what to do.  I am not a big medicine taker.  I started with Naproxen at times and Ibuprofen at others...all the while looking at the bottle of Vicodin that Sarah got a couple of years ago when she had her wisdom teeth removed.  I've kept it around...just in case, and on very rare occasions of extreme pain, I've taken one.

It took the whole day  and into the late night of extreme pain on Friday to convince me to take one of those little pills, and within 15 minutes I was asleep.  A little bit later I woke up writhing in pain again and I took another one and fell back into a relieving comatose type sleep.  I woke up a few hours later and took another one.  Saturday I called the on-call doctor to ask what I should do for the extreme pain they never warned me about.  He told me the pain I was experiencing was unusual...yet when I read online I see that it is not.  He also told me outside of going to the emergency room, there was not much he could do for me as he can't call in narcotic prescriptions.  So he told me to keep taking the ones I had and call my doctor if it didn't get better by Monday, but to go to the emergency room if it got any worse (heaven forbid!).

I have read that the pain usually subsides within 4 or so days.  Today it is 5 days since my treatment and I am feeling some relief.  I still have pain shooting from my tail bone up or down...or wherever...but not as often or as intense, but still pretty painful.  My feet feel like I have been walking on concrete for 5 days without rest.  They feel swollen and I try to stay off of them as much as possible.  

Fortunately, the nausea from the first 4 AC treatments has gone away.  What a relief.  The Vicodin makes me nauseous, but it is different...much more serious, like I will really throw up, but don't, however it is a relief to not be so hungry.  I can eat normally when I feel like it, but if I don't eat for a while, it doesn't become painful and desperate.  So far, I think I will take the pain over the way the AC made me feel.  Perhaps after a couple more treatments of Taxol, I might rethink that.

I am receiving 4 bi-weekly treatments of Taxol for 8 weeks and should be done by mid-July.  I have read that I could opt to have less intense treatments weekly that have fewer side effects, however they would be for 12 weeks.  I am debating...finish and be done with it in 8 miserable weeks, or stretch it out, be less miserable while adding 4 extra weeks on.  I don't know...I am so done with this.