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CheeseQueen57's picture
CheeseQueen57
Posts: 936
Joined: Feb 2016

It appears I'm trouble forming my words. I'm in the hospital being investigated a possible TIA. Good news CT scan clear. MRI in the morning. My cancer hospital but I'll just have to deal. Hope don't screw up my port. Keep you posted. Chemo-the gift the keeps on giving. No chemo for me tomorrow. 

Soup52's picture
Soup52
Posts: 906
Joined: Jan 2016

I guess ignorance is bliss for me too. I never asked my odds with the dr. I know mine is high grade with a Chance of reoccurrence. I just took all the treatment and have some hope.

CheeseQueen57's picture
CheeseQueen57
Posts: 936
Joined: Feb 2016

My attitude exactly!

CheeseQueen57's picture
CheeseQueen57
Posts: 936
Joined: Feb 2016

Well, while driving back from the shore on Monday I had an episode of my left eye going blind, only for a few seconds. Apparently this is a big problem because it landed me in the hospital for observation. So I've been in 24 hours waiting for the results. Poop!  Also had to miss my 14th chemo today as s result. Those of you that missed some weekly chemo treatments, how was that handled!  I've had to miss 2 so far. Doctor said I didn't have to make up the other one but curious how this one will be handled. 

Hanging in there!

EZLiving66's picture
EZLiving66
Posts: 1479
Joined: Oct 2015

I'm so sorry to hear about your eye!!!  Please let us know what the doctor says.  Hopefully it's nothing but best to get it all checked out, that's for sure!

Love,

Eldri

Lou Ann M's picture
Lou Ann M
Posts: 996
Joined: Feb 2015

you have really been having a rough time. My heart and prayers go out to you.  

I missed some chemo times because of bad blood reports. Mostly low platelets.  With that they just rescheduled for the next week and every thing was alright.  Lou Ann

Lou Ann M's picture
Lou Ann M
Posts: 996
Joined: Feb 2015

So sorry to hear this.  You have had a really rough time lately.  Hang in there.  My heart and prayers are with you.

i had several chemo treatments postponed because of poor blood reports. Mostly low platelets.  They just scheduled them for the next week.  It got so bad that they just started scheduling them for 4 weeks instead of every three.  Every thing worked out fine.   Lou Ann

Kvdyson's picture
Kvdyson
Posts: 789
Joined: Jan 2016

CQ - holy cow - that sounds so scary! Glad to hear that you went right to the hospital. Hopefully the results you receive give you good news. I'm not sure about missing the chemo treatments but I'm sure the others will be able to help with that. Wishing you good news and a speedy recovery, Kim

 

beccabtown's picture
beccabtown
Posts: 234
Joined: May 2016

Hoping you get good news soon!

ConnieSW
Posts: 1575
Joined: Jun 2012

This crap needs to stop.  I've got fingers crossed that this problem has an easy, favorable solution.  Tell those docs we said to give you VIP treatment Because you are a VIP to us.

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

That is way scary.  I hope they have some answers for what caused this and hopefully will know how it keep it from happening again.  Hang tough, CQ!

BabyCoach's picture
BabyCoach
Posts: 95
Joined: Mar 2016

A few weeks after my DiVinci surgery my husband had a large stroke in his cerebellum. Cerebellum strokes are rare and with No neurologists in our small town it took us a while to gain an understanding of his status. He has none of the risk factors and all scans were clear. He was referred to a cardiologist thinking possible Afib (the trendy diagnosis for our age cohort) but cardiologist can find "no evidence of disease."  He is now wearing a heart monitor all day for a month to see if he has "silent Afib." All this to say that with time the swelling in his cerebellum is reduced, the pressure on his brain stem removed, and almost all of his functioning has returned - just some leftover equilibrium and balance issues. And some lost stamina. I'm hoping that before Halloween you will discover that your awesome brain has compensated for the injury and ALL YOU ARE DEALING WITH IS CANCER. Nuff said. 

Mary Ann

CheeseQueen57's picture
CheeseQueen57
Posts: 936
Joined: Feb 2016

Well, I'm out of the hospital. The neurologist said it was not a new stroke and after holding Eliquis, they started it again. Bt she explained to me that it can't stop all clots, just most so I can suffer clots in the future. And she confirmed what Eldri said that a diagnosis of cancer (not the treatment) makes you more prone to clots. Great!  So will be looking over my shoulder for cancer and a stroke always. This sucks. But trying to take one day at a time. She says I need to see opthamologist too to see if it is eye related. 

Needless to say, I missed this week's chemo which I'm none to happy about. And as wonderful as Fox Chase is, I hate their out patient call center and I will be lodging a complaint to the higher ups tomorrow about how bad it sucks. My surgeons have given me their personal cell to reach me, but my oncologist forces you to go through the call center. This has not been acceptable and I am going to tell her that in my next appointment in addition to making a formal complaint. When you are in a life and death  situation,  as we all are, you need to be able to reach your doctor.  This was even during normal business hours. Thank God for my PCP friend who lives across the street who has always been there for me. 

On a happier note, my son will be moving up from Orlando this weekend to the DC area which is only a couple hours from me and my husband let me get season tickets to Maryland football games so we can go with my son to the football games. My son went to Maryland and I going to a Big 10 school (MSU) enjoy college football. Maryland even plays MSU at home-a bonus for me. So I have to get well enough to enjoy this time!  

Thanks for ypur support ladies!  It means the world to me. Now if I just could get some sleep!

 

 

Kvdyson's picture
Kvdyson
Posts: 789
Joined: Jan 2016

CQ, keep your eyes on the prize (no pun intended) - getting well enough to enjoy that football game with your son! I'm glad to hear that you're stabilizied and out of the hospital. Now that you're home you'll be able to focus on doing the things that make you healthier and happy. Soon you'll be done with chemo, NED and ready to set your next goal. 

brissance's picture
brissance
Posts: 192
Joined: May 2016

Fingers crossed you will continually improve and be able to enjoy those football games with your son.

Soup52's picture
Soup52
Posts: 906
Joined: Jan 2016

Cheese queen, I'm so sorry for all that you have been through! Totally unfair to say the least. My oncologist referred me to the bleeding and clotting institute here. It took me forever to get in, but I liked the doc. He has me on the injections of Lovastat (I'm sure I misspelled this) partly because I many years ago had a pulmenary embolism and of course the chemo deal and having a port. He said the port can cause inflammation and clots. I hope they can give you the right meds to prevent clots. I know it's a difficult balancing act.:( Many prayers for you!

janaes
Posts: 800
Joined: May 2016

Cheese queen, hope you are feeling better soon. Let us know about your eye.

CheeseQueen57's picture
CheeseQueen57
Posts: 936
Joined: Feb 2016

I was able to reschedule my chemo for tomorrow (Friday) so I won't miss a week.  Yay!  Pray that my blood levels stay good enough to get my next treatment on the following Wednesday.  With a lot of strings pulled, I see the ophthomologist on Monday.  Boy, most doctor's offices are not very patient-friendly.  Thank GOD for my PCP friend and neighbor ( she lives right across the street).  I don't know what I would do without her. 

Still frustrated by speech, but I think that is just going to take some time. 

CheeseQueen57's picture
CheeseQueen57
Posts: 936
Joined: Feb 2016

Oh, another adventure!  After spending 7 1/2 hours in Wills Eye ER it was determined that I have some kind of ischemic optic neuropathy, e.g., swelling of the optic nerve.  And in a comedy of errors, the only machine that could do an MRI of the optic nerve was broken down for hours.  So we have to go back at 8:00 PM tonight for an MRI and see a neuroophthalmologist.  I'm considering skipping chemo this week.  I have only one carbo treatment left and I understand this could cause eye problems. I just have 3 taxol treatments left.  I'll see what my oncologist says tomorrow.  This is a wild ride, that's for sure. 

EZLiving66's picture
EZLiving66
Posts: 1479
Joined: Oct 2015

Chemo definitely affects the eyes!  I had the bright turquoise lights flashing, constant watering, blurred vision and muscle spasms in my right eye.  I am still waiting for my vision to quit changing day-by-day to get my eyes checked again and new glasses.  I am so sorry this is happening to you!!!  (((Susan)))  Let us know what the doctors say!

Love,

Eldri

Kvdyson's picture
Kvdyson
Posts: 789
Joined: Jan 2016

CQ, I am so, so sorry that you are going through all of this. Did you have DaVinci surgery? If so, I recall that there was a post about a relationship to the face-down position for the surgery and vision problems. Praying that your doctors can figure all of this out for you. Kim

 

CheeseQueen57's picture
CheeseQueen57
Posts: 936
Joined: Feb 2016

So, because of my eye problems, most likely little clots, my doctor has decided to switch me from Eliqis to Coumadin.  Apparently this involves 4-5 day hospital stay.  What!!!!!!  So I am back in the hospital.  I didn't get chemo today.  I decided I wouldn't get the last dose of carbo but may get the final 3 doses of taxol, but the oncologist was fine with me stopping all together at this point.  I've had 14 weekly doses of taxol and the once very 3 weeks of carbo so she says we have treated aggressively  

What a wild ride!  Thanks for all your support  

 

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

I cannot believe all of the **** you are having to deal with! 4-5 days in the hospital to switch medication?  I wonder why.  I sure hope they get this stuff squared away for you soon.  Hang in there, kiddo, and I hope you are back in your own bed sooner rather than later.

janaes
Posts: 800
Joined: May 2016

It might be good to be done with chemo and put that behind you especially if the doctors are okay with it.  Goog luck with all your choices.  Im confident you will do what is right for you.

MAbound
Posts: 1153
Joined: Jun 2016

I can't believe how much you've been going through and all of the treatment decisions you've been faced with making. I can understand you wanting to get off this "ride". We'd all would rather not be on it!  Sending you and your family my thoughts and prayers that the therapy you've already had will be enough for now, so you can catch your breath and deal with the difficulties you currently have on your plate.  

You don't have a bio posted so I'm not sure without sifting through all of the threads posted since you joined what your whole story is, but did your post-op pathology include testing for hormone receptors that you might be eligible for that kind of therapy to stop/slow tumor cell growth after chemo/radiation therapy? Doesn't have as serious side effects that chemo and radiation have and if it slows recurrance from happening it might be worth a discussion or two about it with your gyn oncologist. I don't think tumeric/curcumin as discussed in other threads would be an option for you because of meds you're currently on for recent problems.

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1801
Joined: Jun 2015

Wow CQ... You and Eldri seem to hit that unwanted jackpot of issues with chemo. I'm glad the docs feel like you have had enough to be effective. Your body is telling you that too! I hope you start healing now and get back to some kind of normal asap! So sorry you have had to go through so much stuff.

Sending you positive energy of healing.

Love and Hugs,

Cindi

Soup52's picture
Soup52
Posts: 906
Joined: Jan 2016

Wow! You can't seem to catch a break! Prayers for you and recovery!

CheeseQueen57's picture
CheeseQueen57
Posts: 936
Joined: Feb 2016

Well, after spending 4 days in the hospital trying to regulate the Coumadin they sprung me. Yester day  I got a  tranesophageal echocardiogram that was negative but my clotting labs were to high. So my acupuncture doctor wasn't comfortable doing acupuncture today. 

I finally got an appointment with the neuroophamologist for Monday morning. Mind you, this is 3 weeks after i totally lost vision in one eye and it's still not right. I had to practically sacrifice my first born to get the appointment despite being seen in the Wiils Eye Emergency Room. Something is very wrong with this system. Of course you can't get past the gatekeeper nazi receptionist and I've come to the conclusion that my own ophamologist is worthless if you have a problem. 

I have decided to discontinue chemo after 14 out of 18 treatments and despite the fact that I'm not going to ring the bell, my oncologist is comfortable with that. I can't believe the chemo didn't have something to do with my current problems and hopefully it was enough. I'll meet with the radiologist oncologist tomorrow and I've reviewEd the thread on this and it's given a lot of good questions to ask. Thank you all who contributed to that. 

Still have what I perceive as unacceptable speech impairment though others tell me it's not that bad. I know what I was like before. I taught classes and gave lectures. I sure couldn't do that so without a lot of stumbles. It's very frustrating. 

I'm trying to get pumped up to face the radiation.  I suppose it's not as bad as chemo but has it's own challenges which demands the proper attitude to overcome.  Of course,  that's the most challenging part but the part you have most control  

 

 

Lou Ann M's picture
Lou Ann M
Posts: 996
Joined: Feb 2015

Glad you are home and finished with the chemo.  It sure can take a toll on our bodies and you,need some,time,to,rest so all of your,body parts can recover and start to work properly. This is hard enough without having to wait forever for appointments.  Sending hugs and prayers your way, Lou Ann

janaes
Posts: 800
Joined: May 2016

good luck with radiation. Im glad you were able to make some desisions for yourself. Thanks for updating us on your situation.

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1801
Joined: Jun 2015

CQ, so glad you are out of the hospital and finished with chemo. You always have the right attitude so you will get through the radiation with minimal issues! Do you know yet what your treatment will be?

Give yourself a break on your speech. Hopefully it will come back to previous levels sooner than later. It really hasn't been that long since all that happened to you.

Love and Hugs,

Cindi

Soup52's picture
Soup52
Posts: 906
Joined: Jan 2016

good luck with radiation. I think you'll find it's not as bad as chemo. Praying for your recovery with speech and everything.

CheeseQueen57's picture
CheeseQueen57
Posts: 936
Joined: Feb 2016

Well, I finally saw the neuro ophmalogist today. It was a 4 1/2 hour ordeal. After seeing the resident, we waited an hour in the exam room for the doctor. There's got to be a better way. He said my optic nerve continues to be swollen. He attributes either to my anemia due to chemo, the afib, or the amiodarone I'm on for the afib. Unfortunately there is no treatment. He told me to come back in a month unless it gets worse. 

Tomorrow I am scheduled for my CT Simulation in preparation for external radiation. Any insights to prepare and get through that?

I'll have a CT scan on August 30th. I haven't had one since March before my surgery. Hoping for no surprises. 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2911
Joined: Mar 2013

CheeseQueen, I had Intensity-Modulated Radiation Therapy (IMRT).  Some info:  http://www.radiologyinfo.org/en/info.cfm?pg=imrt   They had me lay in a bean bag, sucked the air out of it so it formed to my body so I would always be in the same position for radiation and then I had a non-dye CT.  I had to wait at least a week for my radiation because they build a plan on radiation intensity, etc...if you read the link above you will see why.  

I always had an x-ray before each treatment so they could 'marry-up' the plan to the current x-ray since organs, shift, etc..and was told by the techs they can get within 1/1000 of where it was planned.  (I did have to insert what looked like a glow-in-the-dark dilator.  The first time the 2 male techs asked me if I wanted to insert it.  I said, "uhhh, yeah".  I appreciated that they asked and gave me the choice.  Of course it needs to have lube on it so I did have to correct one young gal -- I can do that.   I never saw her again - ha!)

For me, radiation was exhausting.  The radiation to your pelvis, where so much bone marrow is, just zapped me and I would fall asleep at 7 pm.  I remember sitting at my desk at the office just thinking I was never going to move.  

I would recommend you up the protein if possible and (I'm sorry I just can't remember) take probiotics.  Radiation to the pelvis can cause diarrhea, and I was shown a shocking study with women who did and who did NOT take probiotics during radiation.  For me, I think it really helped.

In some ways it was much easier than chemo but it zapped me.  I still remember.  

Lou Ann M's picture
Lou Ann M
Posts: 996
Joined: Feb 2015

i found the radiation to be the easiest part of this although it did cause diahria.  During the simulation they had me lay on a foamy form that the harden.  It made a place to lay so that I was in the same position each time.  I believe that the technician did there own ct scan so that the radiologist could map out exactly were to aim the radiation.  They tatooed you will tiny pin pricks in several places and put ink on them so that they can line up the radiation machine each time .  They advised me to stay on a low fiber diet, no fresh fruit or veggies and no whole grains.  They hardest part of the radiation for me was holding still for the 20 minutes that mine took.  I was also afraid I would fall asleep and fall off of the narrow table.  They did play my choice of music and there was a window above with beautiful flowers.

Hugs and prayers, Lou Ann

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

Though I ended up not having the external radiation, I did go through the simulation and have the tats to prove it.  One thing they didn't tell me until I was there was that they wanted me to have a full bladder.  You might check to see if that's the case for you, too, if no one has mentioned it.  I ended up gulping down a huge glass of water in the waiting area. 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2911
Joined: Mar 2013

GREAT question, Chris.  I wasn't told that.  

BTW - I never got the tatoos.  I had dots drawn on me with permanent marker and then covered in plastic dots that didn't wash off in the shower and had to be replaced only once really.  

CheeseQueen57's picture
CheeseQueen57
Posts: 936
Joined: Feb 2016

I'm ready for my adventure tomorrow. But since I posted about the amiodarone on my Caring Bridge site, 2 friends are appalled that the doctor would have prescribed that for me considering its toxic effects! especially to the kidneys. Now I'm not trusting my cardiologist and probably should consult someone else. This is all so tiring. The diseases don't kill you, the doctors can kill you with the treatment. 

beccabtown's picture
beccabtown
Posts: 234
Joined: May 2016

CQ, I'm just a few days behind you. I have my simulation (my doctor calls it mapping) appt. on Friday and then should start daily radiation the week after next. About five weeks of that and then some still-to-be-determined number of brachys.

I have been instructed to have a full bladder for the simulation and each treatment. I'm supposed to drink 32 oz. of liquid before the appt. Really dreading that part a lot! Hello Depends!

I've also been told that I'll have the ink marks covered with tape rather than tattoos. Even with the tape, I don't know how the marks can last for six weeks.

I had my CT scan last week. My radiologist was pleased that it showed that lymph nodes, etc., are stable and that there's no sign of new tumors. One thing that is bothering me is that this was the first scan report that mentioned a 2 mm. nodule on one lung. That was also described as stable, though I don't see how they can know that if it wasn't noted in earlier scans. It may have to do with different people reading each of the scans. I'm still waiting to speak to my oncologists about the scan report. (I didn't actually see the report until after I saw the radiologist, so couldn't ask him about the nodule, and he didn't bring it up.)

Anyway--I hope things go well for you. It helps to know someone who is going through the same thing at the same time.

 

CheeseQueen57's picture
CheeseQueen57
Posts: 936
Joined: Feb 2016

That would be the worst part for me!!!!

CheeseQueen57's picture
CheeseQueen57
Posts: 936
Joined: Feb 2016

Hey Warriors!

Just an update!  Saw my cardiologist.  Insisted on him taking me off amiodarone based on my review of the side effects ( blindness was one!!!).  I will be seeing a cardiologist at Penn later in the month for a second opinion.  We are having trouble managing the coumadin levels but that is par for the course, I understand.  Eye still bothering me and is about the same.  I'm afraid it won't be back to normal. 

I saw my surgeon today and she said everything seems fine as far as she can see.  Also saw my medical oncologist today and I won't see her for 6 months and I'll have a CT scan at that time.  My CT scan I had this week showed NED!!!!! Yay!  My last CT scan was in March before my surgery.  The doctor made clear that doesn't mean there is not microscopic cancer cells lurking, but I'm gratefull for a clear scan.

I go for my simulation for the external radiation tomorrow and I anticipate starting that after labor day.  I'm looking forward to putting this phase behind me. 

Thanks for all your support!  It's been truly a blessing. 

ConnieSW
Posts: 1575
Joined: Jun 2012

I've been wondering.  Stay out of trouble!

Lou Ann M's picture
Lou Ann M
Posts: 996
Joined: Feb 2015

After all you have been through, I am so glad you got some good news. NED May you dance with NED forever.  Everything else will even out in the long run.

Hugs and prayers, Lou Ann

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1801
Joined: Jun 2015

NED!!!! That's the best news you have given us in a while. I hope you are continuing to heal and feel better CQ. Good luck on your treatment. And if there are any microscopic cells hanging around, the radiation should zap them away. 

I'm glad you are going for a second opinion for your heart. That eye side effect is scary and since you experienced it first hand, it seems like your cardiologist would have taken you off that med without you having to demand it. sigh.....

Love and Hugs,

Cindi

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

Finally some good news for you.  You certainly deserve it.  Enjoy the break before radiation begins.

Chris

Soup52's picture
Soup52
Posts: 906
Joined: Jan 2016

Congrats for NED! You have certainly been through it! Hoping for progress with your eye!

MAbound
Posts: 1153
Joined: Jun 2016

Still wish you didn't have the other issues to deal with, but it's about time you had something postive happen for you! Here's to hoping the next CT is NED, too. It feels like we all ride the roller coaster together doesn't it? Today is a good day hearing this from you!

brissance's picture
brissance
Posts: 192
Joined: May 2016

Very very happy for you.  

Kvdyson's picture
Kvdyson
Posts: 789
Joined: Jan 2016

CQ, congrats on that great news!! You certainly deserve it considering all that you've endured these past few months. Here's to a whole lifetime of only looking forward and to NED forever! Kim

janaes
Posts: 800
Joined: May 2016

NED for you YEA!!!  I would want all the other side effects gone too. Wishing you the best for that.

CheeseQueen57's picture
CheeseQueen57
Posts: 936
Joined: Feb 2016

I didn't know I'd get my first radiation treatment along with the simulation today and I was totally unprepared for the nausea. Fortunately we had planned to go to the beach and I had my medication in the car and quickly took some Zofran. Took about an hour but I was okay. Doctor should have told me to take it before!!  Car ride home was miserable and needless to say, no beach because they scheduled me for 9:00 tomorrow morning!  Let the games begin!  I thought I wouldn't start till after Labor Day. :  (

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