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Ok, I'm definitley in this sorority now

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

Hi All, CheeseQueen here and here is my story so far:

Post-menopausal for 20 years, had early menopause at age 39 (don't be deceived by my profile picture, that was in 1976!).  In January, started having bleeding.  Had been to gyno in November, no problems. 

  • 1/5/16  Gyno retired in December, had to see colllegue in practice who did endometrial biopsy and said to wait 2 weeks to get transvaginal ultrasound.  And BTW, just found out that previous gyno had not done PAP in 3 years.  All the while, I thought he was doing a PAP each year when I went in for my annual exam (note to self, always follow up on results!)!
  • 1/15/16 Endo biopsy report states predominately blood and rare fragments of endometrium with focal stromal breakdown suggesting repeat sampling and follow up.  So in other words, poor sample quality.  Waste of time, effort, and pain.  I don't know why they even do these anymore.  So I wasted the month of January on this and waiting to do transvaginal ultrasound
  • 1/26/16: Transvaginal and abdominal ultrasound results indicate endometrial stripe 1.3 cm, 3.0 cm righ adnexal mass, perhaps pendunculated right uterine fibroid but not sure.  Diffuse uterine adenomyosis.  Suggests contrast pelvic MRI
  • 2/3/16: MRI indicates slightly enlarged uterus, abnormal endometrial stripe and thickened consistent with adenomyosis.  Appears to be right-sided pedunculated fibroid.  Small amount of free fluid within the pelvis. Ovaries unremarkable.  Further eval warranted
  • 2/1/16. CA 125 in normal range at 20
  • 2/6/16 Had D&C and Hystoscopy and got results on 2/18/16: high grade endometrial adenocarcinoma which is more likely of endometroid type based on pathology, but more specific diagnosis deferred to surgical speciman
  • Scheduled for CT scan 3/7/16
  • Scheduled for DaVinci surgery at Fox Chase 3/17/16 (Happy St. Patrick's Day!)

Appreciate all and any advice as I embark on this journey.  I have had intermittent pain in my lower right flank through this process.  Doctor says could be the fibroid, but I never had any problems with fibroids in the past and ultrasound 7 years ago showed no evidence of a fibroid.  I did have some bleeding 7 years ago and had ultrasound and biopsy which apparently showed nothing.  Now I'm kinda wondering if I should have pushed a little harder at that time.  Who knew?

I feel I'm finally in good hands at Fox Chase.  But I am concerned that this might not just be as easy as just surgery.  At the very least, will require radiation therapy of some sort.  My family had a trip of a lifetime scheduled for April 12 to Tuscany that of course, I'm now out of.  Very upsetting.  They are trying to decide who, if any of them will still go.  Feel like everything is on hold until results come back after surgery. 

Thanks for forum to vent.  Sometimes that's all we need, isn't it?

CheeseQueen

 

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1802
Joined: Jun 2015

Susan, Welcome home and I'm so happy that your trip was wonderful. It will bring you a lot of comfort in the coming months.

You will do great on your treatments.  You sound like you are ready and your attitude will get you through the hard days. May they be few for you!

Love and Hugs,

Cindi

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

It sounds like you had a marvelous time, and as you said, with memories to last a lifetime.

I had a conversation yesterday with my naturopath and among other things she brought up was metformin.  She did mention the GI issues, but said that they generally can be handled by starting with a low dosage and gradually increasing.  It will definitely be a tool in my arsenal.  I hope your PCP sees fit to prescribe it for you.

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

I was so happy you had such a wonderful vacation, I cried.  I'm so glad you were able to go and had the stamina to really enjoy it.  It sounds like you are really prepared for your upcoming chemo.  I wish you nothing but the best!

Love,

Eldri

ncg007
Posts: 136
Joined: Nov 2015

Happy to hear you had a wonderful trip.  Sounds like you are mentally prepared and have everything in order for treatment, so you will do well with it and breeze right through it all.

Nancy

molimoli
Posts: 514
Joined: Aug 2014

Wonderful news, so happy you went and equally happy you were able to put cancer on suspension as you hug the opportunity for  new memories with your family.

Now that you are back and ready to embark on your chosen treatment, I pray, hope and wish that your doctors and you will expell cancer from your life for good .

You are having surgery in the latter part of April, Wedding in June, sister get your clothes ready for the wedding, you aught to be planning to go, then see how you feel come wedding day. Keep stepping out on Cancer. 

We will be here to catch you if we sense you slipping under the burden of treatment, we won't let you fall ,just holla at us , we are all on duty for each other. Many or all the sisters on here have ridden on  the Chemo train ,they will guide you through all the  tunnels, they are knowledgable and open ( sometimes too open, LOL) with info.

Moli--Hoping your tunnels are few ,far between and short ones. Nuff Love 

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

You may find that you can attend the wedding. I was able to take a short trip after my first chemo and I did fine. I know the medical team was concerned about blood clots and immunity, but with a little extra meds everything went fine and it was a nic break! I hope you enjoy your wig. I spent extra to get one that looked more like my own hair, but now I'm feeling that I may go with hats and scarves more often as it seems like the wig may be too hot at times. This is a bold move for me as I guess I'm a bit vain, but now I think what the heck!

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

so good to hear back from you about that "trip of a lifetime". I have been thinking of you in Italy and holding you in my heart. You,Sister, are ready for what's ahead.  Keep us informed as we walk this road with you. 

Mary Ann

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

Uh? Not sure what happened here - but OK. Messages of love and support made in triplicate might be in order.

Good luc, Good luck, Good luck!

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

OK. Port day today. I feel like once I get that I'm really a cancer patient. 

Ive been doing my guided imagery and relaxation exercises. I'm finding that my husband is really kinda stressing me out with his denial of all of this. I have to keep bringing him back to the reality of the situation  Which is not helping me. Somethings going to have to change. Of course, this situation is not new. Just exacerbated by something like this. Let's hope he steps up or I'll have to pull in some of my other resources. 

How have others handled this?  

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1802
Joined: Jun 2015

CQ - That is a hard question to answer. Because each relationship has its' own differences. I hope over time you two will find some kind of balance. But, if he doesn't step up... or even if he does... you may want to have additional resources around to help you.  Also, you may find that you will be able to do more than you think you can. But, you will have some hard days where you will need to lay around most or all of the day(s).  For me - my husband was very supportive. However, he is a lousy cook! So, I generally prepared enough food on my good days to get us through the bad ones. On the few occassions where I didn't, he would go get us something. That was rare.

You also may want to reset your expectations on what is a 'must be done'. You may have a less than perfectly clean house for part of the weeks. Or whatever else you put on yourself as a must do. It is interesting that those items don't hurt a darn thing when they don't get done...

Good luck with your port today. Remember to use the ice packs.

Love and Hugs,

Cindi

 

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

My husband has been wonderful through all of this but I remember having to beg him and our adult son who lives with us to change the bed sheets.  Neither of them even sees a need for sheets!!!  Then they put the bottom fitted sheet on inside out, one of the pillow cases was also inside out and the top sheet had the deep hem on the bottom - tucked in instead of being on the top.  Things like that previously drove me nuts but I remember just lying down, thankful there were fresh sheets - LOL!  

I know my husband felt helpless when I was so sick - that was the worst.  He didn't know what to do to make me feel better.  I felt so bad when I had to tell him we had to cancel our Florida trip - there was no way I would be able to make it.  But he was so sweet and told me we'd make it next year.  We relied on the deli at our local grocery store for our evening meal most nights - he does the family grocery shopping so that worked out fine.  

We've been together 47 years and we each had our "parts" in this marriage.  All of a sudden, I couldn't hold up my end of the deal and that is tough in any partnership - especially ours because we also worked together every day.  

I wish you the best of luck with your new "normal."

Love,

Eldri

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

I'm very lucky that my husband has been very supportive. However, I have found that I have to tell him very concretely what I need and when I need it. It does not work if I try to be subtle. It's not that he's not trying or that he doesn't care, it's that the two of us think so very differently. That is good in some ways but not when he's in the "caretaker" role of our relationship. It's gotten better now that we're more than half way through front line treatment. We both know what to expect and have a certain routine that works for us. Hopefully you will find that with your husband, too. It may just take time to adjust to this new normal. 

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

Thanks Kvdyson!  I think that's the key.  I don't know why I thought he'd know exactly what I needed now, when he hasn't for the past 30 years :).  Sometimes we just get so emotional that we want someone to know exactly what to do....but that's expecting a lot of a mere mortal!. 

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

I second Kvdyson on this.  I think especially for those of us who are not used to asking for help, it is difficult to ask for exactly what you need.  Even though I am not married, I find that I have to be very specific when I ask my BF for something. Otherwise, he just either does what he thinks I need,(which is usually too much) or nothing at all.  And when the dynamic has been that I'm always the "get things done" partner, it is an adjustment.

molimoli
Posts: 514
Joined: Aug 2014

It could be that you are living this  'newness' minutely because it is happening to you, for you this is a catastrophe that you now own and it in turn threatens to own you.You would like to talk about , figure it out ,plan around it marvel at how it came to be,Mentally asking  "how am I going to deal with this'  You are now programmed to do all of these over and over,  all through these motions you are expecting him to: understand ,take it on, co-operate, lighten your load,validate your topsy-turvy state of mind. However,

At this early stage after his initial shock he will now seek refuge in denial, or postponement.He will hang on to 'life as normal' for a while yet.Discussing it or willingly adjusting to the changes will for him be  acceptance of this intruder, harder if you are up and about and appears normal.Don't force the reality on him , it  will come, it will surely come, for you reality is here and now for him it's around the bend, He probably needs more info on the disease than the doctors gave.find some written info and have him read it while you are in the vicinity but not directly beside him. I have found that men , regardless of how long you are with them prefers not to hear anything about our lady parts when it's gone wrong. Intricate details leaves some men speechless and blushing, some will stare with no words, they have none,  and prefers the conversation done before it gets started.

I always suggest written info if you sense any resistance to reality. In the mean time keep the patience intact, if it kills you be kind with words used,(when you describe his behavior to him) they can't come back in your mouth. It is a long journey ,he'll take the train at the next stop or the one after but he'll likely come on board,this is different and more frightening than anything he has  known, I think. At this time you want to exhale and he wants to inhale and hold his breath uninterrupted  till it goes away.

We are here for you when you need to vent, Stress is like miracle grow to cancer and a destroyer of well being,limit it's visit please.

Moli- Just sent off comforting hugs, hope they find you.

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

as usual, you've hit the nail on n the head Moli. I will pull up my patience panties and most importantly not allow this to stress me out. I think I'll send him some links to look at when hes ready. He asks a few questions occasionally and that gives me the door open. My docs seem to have a don't ask don't tell kind of philosophy. They are very forthcoming with info if asked, but don't dump a lot of info on you. I guess that's better in some ways because when I want to know, I will ask or research on my own. However, for hubby who is not a medical professional, this translates into ignorance is bliss. We'll get through this storm. I've got lots of support and all you gals here to bring clarity. 

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

Port inserted this AM with no problems.  However, later in the afternoon I started feeling what I call little sharp chest "pangs".  Since my father had a heart attack at 43 and there's a strong family history, I called the office and they told me to come back in.  Had EKG, another chest x ray and they don't think it's related to heart or port.  Could be that I ate a lot when I came home, I was starving so maybe my reflux acting up.  I think I need to stick with small, frequent meals.  I felt a little silly and we had to spend the entire day down there, but I guess better safe than sorry.  And they are all just such lovely people at Fox Chase.  My nurse was fantastic. 

So back home,  heating up our rotissery chicken.  

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1802
Joined: Jun 2015

CQ - glad that it is over. If you are like many of us, you are going to find smaller meals will be your friend while on chemo. So consider this a dry run!

Love and Hugs,

Cindi

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

I spent a night in the ER with chest pains that turned out to be esophageal erosion.  My brother died of a massive heart attack at 37.  Once in awhile I still get that pain but at least now I know it's not my heart so I just tough it out.  But, small meals work much better for me and no eating after 7:00 p.m.

We're here for you!!!

Love,

Eldri 

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

Yup Eldri, with my high blood pressure and high cholesterol (though well controlled) and father's heart attack at 43 i always thought it would be heart disease that would get me. Being a dietitian, I took pretty good care of myself and always got regular check ups, labs; never skipped my mammogram or yearly exam (although found out later my doc hadnt done pap for 3 years- considering suing because he never informEd me of this! but will wait until treatment is over.) Never dreamed I'd be dealing with this. 

cindy0519
Posts: 173
Joined: Nov 2015

I just saw the thread and while I am way behind wanted to say Welcome - glad your trip to Italy went well (it sounds incredible!) and things are underway to get your treatment started.

I also wanted to chime in on accupunture.  I started getting both accupunture and massage weekly, through integrative care services at my cancer center, when I started chemo in late November.  When I first started I was very much a nay sayer regarding accupunture - thought if it helped I'd do it but I really didn't think it would help much. Turns out I was wrong!  It really seemed to help me manage the side effects of nausea and the neuropathy, in fact I often added a second weekly appointment if I was having a particularly bad week with either nausea or neuropathy. The lady I see says the effects of accupunture are cummulative and with continued treatment most systems either disappear or are well managed by accupunture and I will say this has indeed been my experience.  I am about 5 weeks out from my last chemo and just started radiation last Wed.  I have continued both massage and accupunture throughout the little break between chemo and radiation and plan to continue it throughout radiation as well.

I have never had any issues with infection even when my blood levels were very low during chemo.  I hope you get to give it a try and find, like I have, that is a wonderful addition to your treatment! 

 

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

Thanks so much cindy.  There doesn't seem to be a down side.  I get my chemo on Wednesdays and plan to get acupunture on Mondays or Tuesdays.  How did you schedule yours?

Anonymous user (not verified)

I've now been both, patient and caregiver.  As the patient, I find it easier on myself as well as others not to dwell on my cancer.  I don't want to be the downer in the group and find that others are more themselves if I act like I use to.  As a caregiver a few years ago, I found it a relief that my husband didn't dwell on his health problems either, we simply addressed the necessary needs of the day, then did our normal routine.  Many times, illness is harder on your loved ones, and they are ill prepared to jump in and know how to respond, and how much to respond.  And simply put, most are afraid of knowing what might happen, and simply want to treat it as casually as possible.  I think your husband is not trying to worry you by smothering you with too much care.  Even now, I am quickly adjusting to my being through chemo and looking ahead to summer, the future is still cloudy, but I only want to see the sun.  It's not that I don't know the storm is coming, it's just not here yet.  Hugs Nancy

molimoli
Posts: 514
Joined: Aug 2014

Love the support from this board.

Love the people on this board

Moli- hugging

cindy0519
Posts: 173
Joined: Nov 2015

I had chemo on Wednesdays too.  I usually had accupunture on Monday and massage on Thursday.  A Thursday appointment was very doable because I generally felt okay due to the steroids that they give you with chemo and those that you take after. 

I'll be interested to hear how and if you think it helps you....and I hope it does!!

molimoli
Posts: 514
Joined: Aug 2014

He may well have been negligent but generally the Pap test only picks up cervical cancer and is not expected to  give any clues that something is going wrong in ovaries, uterus or tubes , although the odd times  pus from the uterus may drain to the cervics and may show up on pap test only as pus. A vigilant doctor will then check what's causing the small smear ( and usually just a smear) of pus by investigating the other uterine organs.

I had a perfect pap result 1 week and 3 days before I suddenly spotted and went to the doctor , had an immediate D and C only to be told "We are sure you have endometrial cancer " The many, many confirming test started,  within 1week it was confirmed  Serous papillary endometrial adenocarcinoma. Stage 3 grade3 was confirmed after surgery 2 years ago.

A repeat pap while waiting for surgery showed absolutely no sign of cancer,no pus. although my uterus was thick with pus. Over the years before I spent a lot of time warning women against their reliance on pap to pick up any thing but what the test was created for, cervical cancer and nothing else.

Please double check all info as I am not a doctor, Ok.

Moli -Wishing NED for all of us in a hurry.

ncg007
Posts: 136
Joined: Nov 2015

CQ,  Happy all went well with Port install and you are ok.  Best of luck with your first chemo tomorrow.

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

Wishing you good luck on your chemo today cheese! I just had my 4th one Monday and so far I'm still feeling good probably after effects of the steroids, but who knows maybe it will be easier this time. On husband support- mine has been wonderful, but he likes to remain in the dark a bit too. He has Parkinson's and I actually know more about it than him. For him I guess it works the best to just go on and enjoy life in the best way he can. Maybe your husband is the same about you?

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

Thanks Soup. He asked a lot of questions at the doctor visit today. I guess he's coming around. : )

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

BEST OF LUCK TODAY (((Susan - Queen of the Cheese)))

Love,

Eldri

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

Had a reaction to the taxol.  So dosing up on steroids tonight, will up dose of Benadryl and steroids tomorrow and slow down drip. Praying this desensitization works. Anyone else have this happen and desensitize successfully?

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

i had a reaction to the Taxol on chemo #3.  They stopped it for awhile, gave me more Benedril and then started it again ith a much slower drip.  By the next time they just started it slowly and then gradually increased it back up to normal.  I never had another problem with Taxol.  Good luck, I know that a reaction can be pretty scary.

Hugs and prayers, Lou Ann

DebiR
Posts: 39
Joined: Jul 2014

I had a reaction the first and second time.  Both times they stopped, gave me benadryl and then restarted.  The second time they slowed down the drip but I still had a reaction.  They wanted to change Taxol to Adriamycin (aka the red devil).  Since I was in a study and I wanted remain in it and didn't really like what I read about Adriamycin I did some research on my own and found that the Cleveland Clinic had developed a desensitization protocol.  I'm in Cleveland but was going to University Hospitals for treatment.  I asked my case nurse about this option and the doctor agreed.  It worked!  

You can find more details in my previous post here:

https://csn.cancer.org/node/285413

Debi

cindy0519
Posts: 173
Joined: Nov 2015

I had a reaction to Taxol on my fourth cycle (to everyone's suprise because they say it usually happens cycle 1 or 2).  Taxol was stopped and more steroids/Benydryl administered before restarting Taxol much slower.  During cycle 5 I had a reaction to Carboplatin - same drill - stopped infusion more steriods and Bendryl - rash did not improve after 20 mins so another "bigger, badder" steriod (I can't recall ever hearing the name) was given and the rash slowly began to disappear.  The oncologist came down during all of this and a decision was made that cycle 6 would be done inpatient at the hospital so a more formal desensitization protocol could be done and all the support of the hospital was at the ready in case of a severe reaction, which the oncologist felt strongly might happen.

For cycle 6's desesentization protocol I took two Dexamethozone tablets the evening before cycle 6, I did not normally take any pre-infusion but took it for two days after.  I checked into the hopsital when the had a bed available about 10:20am and was given all of the normal pre-infusion drugs.  I got each of the drugs (Taxol and Carboplatin) in three bags: the first was very diluted with saline and infused very, very slowly, the second a bit less diluted and infused a bit faster, and the last bag had little dilution and the fastest infusion rate. The infused the Taxol first because they felt I was less likely to have a severe reaction to it.  Then the started the Carboplatin.   It took a total of 15 hours to do both drugs instead of the normal 4 1/2 hours. I had a nurse by my side the entire 15 hours.  I did still have a mild allergic reaction to the Carbo, in the form of a rash, on the last bag so the infusion was cut off about 15 mins before it finished.

 

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

Had a reaction to the taxol.  So dosing up on steroids tonight, will up dose of Benadryl and steroids tomorrow and slow down drip. Praying this desensitization works. Anyone else have this happen and desensitize successfully?

Anonymous user (not verified)

Sorry you had the reaction.  Did you have oral steroids to take the day before?  I didn't have a problem but did take 5 small pills (steroids) with the evening meal the night before my chemo, also a Claratin 10, then took another 5 small pills (steroids) and another Clartin the morning of the chemo.  At the chemo, they gave me a Benadryl.  I'm not sure what was in my bag of goodies but I think probably more steroids.  Thankfully I didn't have a reaction to Taxol.  I have heard that Taxotore is like Taxol but does not have a preservative that Taxol does (I think it's caster oil).  Hugs Nancy

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

I also had the five steroid pills the night before as well as the morning of Chemo. Maybe that helped me. One thing I did notice is that I was really flushed on my face and chest. Perhaps this was a slight reaction? My dr. Instructions is to do a very slow drip of which I am thankful. I hope they get your dosage and reaction turn around. I'm sorry your first treatment had to start this way.

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

I take one decadron pill at 9 pm the evening before and another at 7 am the morning of my Taxol day to prevent an allergic reaction. Also, the infusion nurses give me a bag of Benadryl about an hour before they start the drip. That Taxol is nasty stuff!

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

with the 5 tiny Decadron tablets the night before and then early in the moring of chemo.  Plus Benadryl as part of the pre-meds.  The only time I had any reaction was a slight tingling in arms and legs, I think chemo 4.  Other than that, I was clear.  Hope the steroids/Benadryl work for you,

Chris

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

The steroids worked and I had no reaction yesterday to the taxol. i spoke to the doctor who said  would dose up on steroids again next week and also do the slow drip. She assured me that we would gradually be able to reduce the steroids as time goes on. 

On another note, the nurse thought the anti nausea meds would last until Saturday. NOT!  I dosed up today and just feeling mild nausea now. Was able to make 3 hour drive down to the beach. So far jufeel a little out of sorts but last night had hot flashes, heartburn, and chemo farts that I thought were going to kill my husband in his sleep!  Whew!  

We'll see what tomorrow brings. Acupuncture on Tuesday. I'm also finding that my early morning meditations are also helping. So did my coloring book in the infusion room. 

Hugs to all and thanks for all your feedback. So valuable. 

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

Oh,yeah, those were vile!  I even called my boyfriend one evening and said, "Don't come over here. I can't open enough windows."

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

So glad everything went better today.  I only had one reaction to Taxol, but several to the Carbo. 

I love he color books. I have a whole collection. I find them very relaxing.

Hugs and prayers, Lou Ann

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1802
Joined: Jun 2015

OMG, they are the worst! I'm telling you... Gas-X was one of my best friends!

I hope you get through this with minimal pain!

Love and Hugs,

Cindi

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

Had to postpone the aforementioned trip to Russia and Scandinavia.  Recovering from this DiVinci surgery has been arduous.  Intially a breeze I was so encouraged until the severe allergies to something (glue or antibiotic) inserted in the puncture wounds became systemic with hives, welts all over my abdomen, wrists, and neck.  Requiring prescriptions.  UGH.  Then a nasty bladder infection from the catheter showed up.  Then a horrible reaction to a mycin antibiiotic which I inform everyone that I cannot take.  I did not realize that Bactrim is a mycin; since it is written all over my chart, and she was told, the PA should have known better.  After a switch in meds, i'm still trying to resolve the infection.  NOW, the pain in my groin when I walk and subsequnt swelling MIGHT be the beginnings of lymphedema.  In three days in my surgery post-op and treatment planning for monitoring.  I just hunker down keeping a focus on my good path report: Grade1; Stage 1-A.  Trip postponed until September, but still on the calendar!

Mary Ann

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

I'm so sorry you're having these complications but that diagnosis is WONDERFUL!!!  I hope your new antibiotic works and you can take that trip this fall.

Love, 

Eldri

ncg007
Posts: 136
Joined: Nov 2015

Sorry to hear of all your surgery recovery issues.  Good news on your low stage 1.  I wish you a speedy recovery.  Hang in there !  Hugs!

Nancy

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

Sorry you had to postpone your trip, but by Sept you will be fully healed. I don't know why they use that dermabond crap. I have horrible scars on my belly from a couple of the areas but didn't have the problems you've had. When I had my port inserted, I made sure the surgeon wasn't using that crap. Good luck on your recovery   

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

Mary Ann, congrats on the great pathology report! So sorry to hear of your trouble recuperating from your surgery. Praying that you be healed up in time to make your September trip. Congrats again!! Kim

 

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

i am sorry that you are having so many healing problems with the di Vinci.  I hope,you,are on the,road to healing now and that you will be all healed and healthy when September and trip.time gets here.  Hugs and prayers, Lou Ann

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

Hello all and thank you for letting me join you.  I know little but I will be glad to share or help as much as possible.  All for one and one for all.  I have 1A grade 3...   diagnosed Dec, surgery Feb and now going through chemo 3 rounds platinum/taxol-taxere then 25 external rad, 3 internal and then 3 more chemos.  I am at a great hospital and think all is right in the world.  Now shining my armor to do battle with the evil one...  Cancer.

I can't help but smile as I read your posts..  I love it.  I guess it is gallows humor but laughter is the best medicine and I am enjoying taking mine.  Chemo Farts...  holy cow.  (Very real and deadly but up until you laughed about it...  it was just another malady I try to avoid....  now I will giggle like a juniori high boy)   I too had a reactioin to taxol.. I took the 20 mg of steriods the night before and the morning of.. had benedryl... slow drip and at 12 min into first infusion it felt like a truck had run into my back, I flushed and couldn't breath... just short of being coded when I came around.  Next time tried again,,,  slower drip more meds and had 2 reactions but not as severe.  So Wednesday I try Taxere..  allegedly the same minus the oil.  I am sure it will be fine.  The sweet heart of a chemo nurse seved me well.  She actually had two sensiitivity reactions that day.  Mine was the worse she had seen.  I started calling her Killer and the whole floor now calls her killer.  What a delight she is.  Anyway, I hope that a) missing two round of Taxol and b) changing to the less preferred Taxere doesn't impact my final outcome.  I want to get all the poison I can to kill that stuff.

Again thanks all of you for making this so much easier with the face the fact laughter and support.  

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