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Cheese Update

CheeseQueen57's picture
CheeseQueen57
Posts: 770
Joined: Feb 2016

Hello Sisters:

Well, today I had a renal stent inserted in my right kidney. I have a little blockage in my left but doesn’t warrant a stent. Surgery very easy but stent continues to be a little painful but not unbearable.  They Narced me up after surgery but I am not currently on pain pills. The prescribed some of that medication for irritable bladder. Seems to be working on the bladder spasms. I only have pain when urinating and regular urges to urinate but bearable pain. If only I could sit on the toilet all the time! I am anticipating this will improve. I’m going to Florida on Feb 22 so I hope it’s better. 

The urologist still doesn’t know what’s causing this. Could be radiation damage or could be cancer. It’s a watch and wait situation. Meanwhile I’m hoping the Megace is still working.Good news is there’s no kidney damage. So on to schedule the Prolia infusion and try to solve the migraine issue. I don’t care for my current neurologist and it’s taken til April 2 for me to get an appointment with a Penn neurologist. Unfortunately I’ve gained 10 pounds on the Megace and I can’t say I wonder why!

Meanwhile I’m doing fairly well. Taking in an occasional movie with my Movie Pass, celebrating my son’s 26th birthday watching the Eagles win the Super Bowl (Fly Eagles Fly) and planning our next trip to Florida. I’m pretty deconditioned again so much f it ever warms up I’ll have to start walking again. Trying to enjoy every day. My next CT and Renal Scan will be the end of April. Trying to enjoy a joyous life until then. You are all in my prayers every night. 

Susan

saltycandy13
Posts: 167
Joined: Dec 2017

Hi Susan, I suffer from Migraines too.  Are you using Imitrex?  I use that and they had me on Vicodin for a while but I got off of it.  I now use extra strength tylenol for the headaches and cold compresses.  I did try BOTOX.  Didn't work.    I have to see my neurologist too March 12.  He mentioned giving me marijuana pills!  I am adverse to that sort of drug.  Really don't believe in marijuana.  I doubt I will try that.

As far as the urination thing, maybe bring a magazine to the bathroom.  I've had bouts of over active bladder and it's a pain you know where.

I will keep you in my prayer list and pray it is not cancer!  Keep your spirits up for your trip.  Now, that sounds great.  I think that will make you happy.  Until then, you are in my thoughts and prayers.  I have quite a list of people.

God bless!

Karen

CheeseQueen57's picture
CheeseQueen57
Posts: 770
Joined: Feb 2016

imitrix is out of the question because of my afib and previous stroke. Unfortunately because of my now numerous comorbidities the migraines are hard to treat. I just got my medical marijuana card in PA unfortunately the dispensaries haven’t opened yet and I’m not averse to trying it. I know many people that have been helped and had run out of traditional treatment options. When you’re in pain you’ll try anything. 

MugsBugs
Posts: 102
Joined: Jan 2018

I am sorry you have to go through this!  Go to Florida and have a good time. I am praying that the kidney issues are a result of the radiation.  Radiation is hard on the body.  Go Eagles -wasn’t that amazing!  I am a Redskins fan but have family in Philly so I am really happy they won!

Take care of yourself!

Betty

Northwoodsgirl
Posts: 498
Joined: Oct 2009

Glad to hear the stent is bearable. Sounds like time in Florida is something to look forward to. Glad you and your son enjoyed watching the Super Bowl. I live in Minneapolis suburb and from what I can tell the Super Bowl went off quite well. I‘ll keep you in my prayers that your kidney issues are NOT cancer. You are like me ....one day at a time we live with joy and thankfulness. ((Hug))

Lori

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2521
Joined: Mar 2013

Susan, thank you for the update.  I am sorry to hear everything you are having to go through, and even though you have to wait, I applaud you for getting a new neurologist if you are not happy with your current one.  We are putting our life in thier hands and we have to like them.  

As for football, I am a Steelers fan, but I am glad your Eagles beat the Patriots!

saltycandy13
Posts: 167
Joined: Dec 2017

We have a marijuana dispensary right here where I live in Rochester, NY.  Would that in some way help?

My doctor did tell me that he has patients that it does work for and gets rid of the headaches, but I've been very reluctant to try it.

I saw a show the other night about medical marijuana and it sort of scared me.  They mentioned "carcinogens."  How do they get that out of the pills?  I'm not well versed on this!

Karen

CheeseQueen57's picture
CheeseQueen57
Posts: 770
Joined: Feb 2016

i have to do more research but figured I’d be ready if I need it. I’m sure my oncologist won’t think much of it. She’s very conservative but she might surprise me. My PCP did.  From what I read, most states aren’t honoring cards from other states right now but DC is working on a system to do that. Too bad my son will soon be moving out of that area but by that time PA should be up and running. My doctor was recommending oil. 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2521
Joined: Mar 2013

do you mean CBD oil?  That is more readily available in states that do not allow marijuana.  

CheeseQueen57's picture
CheeseQueen57
Posts: 770
Joined: Feb 2016

Don’t really know. PA has approved medical marijuana. They just don’t have their dispensaries up and running yet. Should be by March. 

ConnieSW's picture
ConnieSW
Posts: 1407
Joined: Jun 2012

Appreciate the update. You have been on such a roller coaster since your diagnosis. I cringe at the description of the stents. Hope you can try the medical marijuana and it brings you some relief. From what I read, it has a lot fewer side effects than other drugs we deal with.  Good luck. 

evolo58
Posts: 292
Joined: Dec 2017

Hope everything turns out OK.

saltycandy13
Posts: 167
Joined: Dec 2017

I think getting this stuff is not going to be easy.  Attorney General Jeff Sessions wants to do away with all of it.  But then I hear it can be state mandated.  Our governor here, is very supportive of it.  My husband has been trying to get it for his spinal stenosis but hasn't had much luck.

There are a group of Neurologists in Buffalo NY where I go and they write scripts for the pills.  It's at the Dent Institute in Amherst NY. right outside the city.

Karen

derMaus's picture
derMaus
Posts: 532
Joined: Nov 2016

Thanks for the update, Susan. I've been wondering how you're doing so I appreciate your letting us know. It's really amazing what we can put our bodies through - BEFORE you even get to the cancer part - and they keep going, somehow, but they sure aren't happy. I have no experience with migranes, but I've had one or two brutal hormone-related headaches, complete with nausea, and that was enough to convince me I didn't want any more. I can't imagine dealing with such a thing on a regular basis, and admire your strength in dealing with that AND the kidney stent. Please keep us updates; you are in my thoughts and prayers. Best always, B

barnyardgal
Posts: 185
Joined: Oct 2017

Thank you for the update. Praying for you and hope you have a great time in Florida.

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1477
Joined: Jun 2015

Cheese, 

Thanks for taking the time to update us. I hope you find relief very soon. The weather here in Florida is wonderful right now. I know you will enjoy your trip.

Stay strong sweet lady.

Love and Hugs,

Cindi

MAbound
Posts: 780
Joined: Jun 2016

Susan, I keep looking at this thread all day and just can't seem to find the right words to say how sorry I am that you have to keep going through one thing after another. It's so unfair...but I really admire how you keep plugging away at each new thing and still manage to make future plans and find ways to keep enjoying life in between it all. Way to go! If we have to live with cancer, that's the way to do it!

ckdgedmom's picture
ckdgedmom
Posts: 166
Joined: Oct 2017

Susan I am so sorry you are going through this...you are a Wonder Woman to me!

I'm behind on posts because I have spent the last 2 weeks locked in a theater with high school kids doing Legally Blonde...I have missed you ladies but sad when I see a fellow warrior going through something...

sending love and healing vibes...

EZLiving66's picture
EZLiving66
Posts: 1303
Joined: Oct 2015

I am so sorry you have to go through this but you amaze me with your stamina. The Florida weather has been beautiful and it's supposed to stay that way. Are you going to be on the gulf coast??  If so,  I'm here!! Come and visit or we could meet?? 

Thinking of you!

Love, 

Eldri 

MoeKay
Posts: 187
Joined: Feb 2004

Hi Susan,

Sorry to hear about your need for the kidney stent.  You are one tough cookie, that's for sure.  I admire your determination not to let any of this crap interfere with your life any more than it absolutely has to.  That Vitamin D from the Florida sun will work wonders on your bones.  Hope you get some relief ASAP from those lousy migraines!!

Have a wonderful trip!

Maureen

CheeseQueen57's picture
CheeseQueen57
Posts: 770
Joined: Feb 2016

Fortunately the migraines have let up but I’m not going to kid you, this stent is hell. I thought I was going to die this morning from the pain. I’m on Flomax and something to reduce the urgency but I guess it takes a while to kick in. Bladder spasms are like labor pains. Yuk. All you want to do is sit on the toilet. I had to resort to taking Tramedol this morning. I’m doing ok now but I hate taking that, but I guess sometimes it’s necessary. The doctor’s office called me this morning and pretty much said this is to be expected and should get better. I feel like Job. 

I‘m determined to get this under control for Florida next week. 

Northwoodsgirl
Posts: 498
Joined: Oct 2009

Susan, Oh that sounds so awful! Take as much Tramedol as needed. Don’t suffer anymore than you have. Sometimes it must seem like it never ends.....Job got through it and you will too! It’s interesting how the “good book“ has so much that we can relate to in our trials and tribulations. 

Lori

janaes
Posts: 723
Joined: May 2016

Im glad you can find joy in life despite your set back.

JinVa's picture
JinVa
Posts: 29
Joined: Dec 2017

Cheese Queen, your fortitude and strength are inspiring. hope you feel better soon!

rcdeman
Posts: 256
Joined: Aug 2016

Dear Susan,

Thanks for updating! I'm glad you are doing well despite the renal stent. I'm praying the cause is not cancer and hoping the Megace is effective.

Prayers,
Rebecca

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