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Mary1024
Posts: 17
Joined: Apr 2012

I was Dx'd with late stage aggressive Uterine cancer in Oct. 2010. Had hysterectomy, chemo, radiation, more chemo, and internal radiation. Ugh. It was horrible to go through and financially devestating as I couldn't work during my 8 months of treatment.

Anyway, just thinking back was all the pain worth it? Yes, I got to see my two nieces married, got to spend time with a newborn great-nephew, and created some wonderful memories with my family.

Recently I've had some blood in my urine and I'm super worried about reoccurence in the bladder. Of course every ache or pain I think is a reoccurence - but this blood in the urine thing has my anxiety in overdrive.

I try not to vent too much to my partner. We've been together 15 years and during my illness she has been my rock. We love eachother so much. I need to vent, but don't want to send her into fits of worry needlessly (hopefully).

Would so love to take her back to Hawaii for our anniversary in November - but as I'm sure you understand - treatment has taken every dime I have and every dime I don't have too!

Will be visiting the Dr tomorrow and hopefully have follow-up CT scans same day. Fingers crossed that the other shoe doesn't drop.

Mary1024
Posts: 17
Joined: Apr 2012

Unfortunately, yesterday I was told that my cancer is back. I had almost 10 months remission and now my world is spinning and I feel dizzy and out of control. My partner of 15 years was with me for the news. She has been such a support during all this. Now I must figure out how to tell my family. Mom, Dad, 3 sisters, and 2 brothers. My family has been through so much lately with other illnesses I hate to put them through yet another crisis, but its not as though I have a choice. I can't NOT tell them. Next week I'll know more after my Gyn/Onc gets my CT scan resuults back and see where else cancer has decided to take residence.

I feel like my job at this point is to remain calm and try and bring reassurance that we'll meet in heaven one day. I would like to believe that, and I know that will bring my family comfort. I hope I can help to soothe everyone through this transition. It's a trip we all must take, I just didn't expect my ticket to be quite this soon.

I just need to get my feelings out - and this is the perfect spot. Doesn't matter if anyone else reads it or not.

My job is to be courageous and leave them with as many pleasant memories as possible.

Mary1024
Posts: 17
Joined: Apr 2012

Yesterday on a phone call with my partner she asked if I had told my boss about my reoccurence. Yes, I told her and told her that she needs to start looking for a new team member asap - that I would work as long as I could, but I want to spend whatever time I have left with my family.

My partner said "Are you quitting work?" Why would you tell her to hire someone?"

Baby, I'm not going to get well this time (barring a geniune praise Jesus miracle). She started to cry. She, up until this point, has absolutely refused to talk about anything but total wellness.

The house is in my name - she needs to purchase it outright from me - she refuses to deal with the reality that I'll probably be gone in a year, maybe less.

I haven't told my family yet. I need to tell them in person. My family will not take this well. We are very close. It will hit them hard.

Mary1024
Posts: 17
Joined: Apr 2012

Still waiting for the Dr's office to call and discuss the CT results - but with a little creative manuevering I got the CT report.

Not as bad as I feared - Ok I know I have the tumor in the vagina (and I don't think they can radiate that area again) so I'm curious as to what they will suggest.

CT of the chest,abdomen, and pelvis - only shows one new nodule 1.1 cm in the right lower lung. There are other nodules they attribute to a blood clot to the lungs (that was fun)- but those have all remained stable.

There is a new nodule in the Kidney, but they think it's just a cyst. Not sure how they can tell cancer vs cyst - but they seem pretty blase about it, so I'm going to agree.

So tumor in the Vagina and nodule in the lung - doesn't sound horrible - wondering wondering wondering what they'll suggest. Just don't know if I can do chemo again - Surgery wasn't an option for the tumor in the Vagina the 1st time - they used radiation - the new one is in a new spot.

If I do nothing...how fast will it spread? If I do something...how sick will I be?

Mary1024
Posts: 17
Joined: Apr 2012

My partner, her mom, and I all went in for "the talk"

My uterine cancer has metastizced to the vagina and right lung - 1 tumor in each spot.

As the Gyn/Onc explained, the new vaginal tumor is problematic. Surgery would be extensive and risky - very complicated - Plus there is very little possiblity of making sure they've got it all. Chemo is not effective for a vaginal tumor - Radiation is the only useful tool and I've had so much radiation previously that its not advisable. Today I confirmed that with the Onc/Radiolgist.

The lung met could respond to chemo, but since they can't treat the vaginal tumor, it really serves no purpose. Megace or homonal therapy would be of little or no value - he said it's usually used in women with mets to the lungs only, the more aggresive the cancer & shorter the duration of remission the less likely Megace is to be effective.

My Gyn/Onc gave me his opinion but that if I wanted to pursue treatment he would do everything he could and be as aggresive as I wanted him to be.

I had already made a decision not to pursue further treatment if my cancer came back. The first time I had 5 rounds of Cisplatin, then 5 weeks of daily pelvic radiation, then 6 rounds of Carbo/Taxol & 2 brachytherapy. I went through hell - but I got 10 bonus months - I got to see 1 nephew and 2 nieces married and see my new great-nephew come into this world.

I'm glad that my partner and mother-in-law heard everything the Gyn/Onc said - It's not just me declining further treatment, but further treatment is ill-advised for my condition.

I'm sad. I'm scared. I talk a good game about god and faith - and I do believe - but you can't know for sure until it happens. I've told all my family and friends - everyone is incredibly supportive - even my employer. I feel like it's my responsibility to be strong, put on a brave face, not be full of self-pity. I don't want to add to their pain - if I can make them laugh and make them think my faith is unshakable and there is nothing to worry about - then I'm going to do it.

catwink22's picture
catwink22
Posts: 239
Joined: Sep 2009

Hi Mary,

I just read your posts and I want you to know that you're not posting to the air. I'm so sorry for your recurrence.

I am also one of those who doesn't like to (or can't) think that it's not going to be ok. I have to ask, have you thought about a second opinion? or a clinical trial? There have been great advancements in cancer treatments recently.

I was diagnosed with Non-Hodgkin Lymphoma, not an aggressive cancer, but I was stage 3. All my lymph nodes above and below the diaphragm and metastatic to my hip. I did treatment for two years with a monoclonal antibody called Rituxan. No harsh chemo, I was never sick, didn't lose my hair, worked every day except the infusion days and although NH Lymphoma is incurable I have no evidence of disease.

My point is that years ago this type of treatment was never heard of. If you are at peace with letting go, then go with blessings, but maybe it's worth it to at least check it out? False hope is hard to deal with if that's what happens, but we've been living with that anyway.

I pray that you find your comfort and the way that you should go.

Peace,
Cat

catwink22's picture
catwink22
Posts: 239
Joined: Sep 2009

Hi Mary,

I was in my discussion board this morning and not to push the issue, but just some further information for you to consider if you're willing. There is a post under "Thanks for helping me decide" by po18guy about the success of some clinical trials.

Thought it might be something you would miss because it's posted under Lymphoma.

Prayers & Hugs
Cat

Mary1024
Posts: 17
Joined: Apr 2012

I'm definately open to treatment, just not "more of the same". Chemo and Radiation had me bed-ridden with fatigue and pain for 6 months -

I'd rather have 12 months of feeling physically ok, than 18 months of being ill from treatments.

I'm just not willing to sacrifice quality for quantity. Everyone's situation is different, so I respect when someone choose to fight no matter the statistics and consequence.

We just visited a friend of ours last night. She was diagnosed with breast cancer a few months before my diagnosis. Despite the best of care her disease has continued to progress and she is critically ill and could die at anytime - in spite of this she is still fighting and getting chemo. I think she is very brave, but that is not the journey I want to follow.

It made me think of it this way: 2 teams are playing a basketball game. Team A wins, but despite this, team B refuses to leave the court, they continue to shoot baskets trying to get the scoreboard to change.

Mary1024
Posts: 17
Joined: Apr 2012

I had terrible dreams last night. Luann kept telling me she was leaving (I wasn't sick in the dream) - she'd couldn't say why she was leaving, just that our relationship wan't working for her anymore. In my dream I was so hurt, distraught, and angry. The same dream played in a loop all night long.

I know it's because I've been thinking about passing away a lot this week - and I don't want to be without her. I don't want to be without my family.

Everyone knows they will die at some point, but now that it's so real it's hard to accept. That's why I think so many people "go down fighting". I'm trying to come to grips with this.

Strange. I feel ok physically - yes I do have some pain and discomfort, but not a lot. Hard to believe that my life span could probably best be described in months - Hard to believe that my 10 year old dogs may out live me.

I try to stay positive by thinking about who will be there to meet me at my "homecoming" - my grandmother and great grandmother who I loved so much, my pawpaw who I never met, my dogs Carly, Andy, and Sheriff - my little brother whom I never knew - a couple nephews that didn't make it into this world. And lots of people I've looked up on my geneology searches.

catwink22's picture
catwink22
Posts: 239
Joined: Sep 2009

The time keeper made an error, there are still two minutes left to play!

Please, I'm not trying to make light of your dire situation, just thinking that maybe it's an outlook you hadn't seen? We think we know what the outcome will be, but it doesn't always happen that way.

I completely understand not wanting to suffer or feel tortured for what time you may have left and respect your decision if it's made in a clear mindset.

Have you talked with your physician about depression? What if it's blocking your mind to a clear decision? I'm sure you see yourself in your friend who is in such distress, how could you think it will be different for you? There are ways to receive help at any stage that I don't think a lot of us know about since every turn seems to be a new bumpy road.

Please seek out this help, or at least talk to someone about getting something to lessen your nightmares, you don't need to be tortured in your sleep too.

Peace and hugs
Cat

Mary1024
Posts: 17
Joined: Apr 2012

Ha,ha! Your right there could be a few minutes left on the clock.

I called Cancer Treatment Centers and I'm going for a second opinion - it won't hurt to get another opinion, and I get to make the final decision.

Oh, yes I'm depressed, and on medication. It's not the depression that is causing me to not want more treatment, it's the memory of all the pain I was in for 6 months and not wanting to revisit that.

I just want to do what is best for me and right now I'm confused about what that will be.

Thank's for the concern Cat - No worries, this is just an outlet for me...I have a great support network around me.

Now..what brings you to this website? Hope you are doing ok.

catwink22's picture
catwink22
Posts: 239
Joined: Sep 2009

I'm glad to hear you are searching your options! I totally understand about the painful treatments. The cure is worse than the disease in some cases.

There are really some wonderful people on this website. When I was first diagnosed I had never heard of Lymphoma and came here for some information on my treatment options. I wanted to make sure I wasn't missing anything or could get advice on things that the docs just don't tell you sometimes (like BMB's and how painful those are!).

I have also learned a lot about caregivers and how at times it's harder on them. I have to admit I never really thought about it, I mean we're the ones with cancer how hard could it be for them right? So wrong.

Knowledge is power, and these are the people who have been down the road, who better to learn from?

I am doing well today, and I hope you are too. Happy that you have that support it's so important!

Wish you the best in your journey and I hope the knowledge and comfort comes to you soon.
Cat

Mary1024
Posts: 17
Joined: Apr 2012

So this is what my first Oncologist was talking about - My Dr had said that there is one surgical procedure that is sometimes tried with recurrent gynecologic cancers and it involved removing all the pelvic organs, and that he didn't recommend it.

I have a horrible suspicion that CTCA will recommend this as a form of treatment - and if you google it you will know why there is NO chance of me doing this - being hooked up to bags for the rest of my life, and that's IF I survive the surgery.

I'll go to CTCA and hear them out, maybe their recommendations won't be as horrible as I imagine.

catwink22's picture
catwink22
Posts: 239
Joined: Sep 2009

Hi Mary,
Whew, that doesn’t sound like a pleasant experience and I understand your unwillingness to go that route.

I’m always thinking “there has to be a better way”. Maybe I’m wrong, but you don’t know unless you overturn every stone. I drive my boyfriend crazy because when we go to the beach I pick up every shell and look around every rock, but one day I found the most beautiful purple starfish! (Click on my name and go to my expression tab, click on the picture). I would have missed it if I hadn’t been inspecting everything lol.

You owe it to yourself to make phone calls and do the research, you deserve to know what if anything is out there that your doctors aren’t aware of (they are human and there are only so many hours in a day).

I’m not sure where you are located, but I have found some links that you might want to look at. I don’t understand a lot of what is written (all the medical terminology), but you could print them off and review them with your doc, or call the cancer centers directly. There is help with transportation from many organizations, even flights if you are not near a center that offers treatment.These resources are out there for people like us, we just have to find them.

I so hope that you get some news of a different course of action, but if it’s not to be then you know you’ve done all you can. I’m saying a prayer for you!
Cat (see below)

http://www.mskcc.org/cancer-care/adult/endometrial-other-uterine
http://www.cancer.gov/clinicaltrials/search

Mary1024
Posts: 17
Joined: Apr 2012

Luann & I are going to counseling - we have a wonderful therapist who is helping us to help eachother through this very difficult time.

Oh how I wish I was living in a state where medical marijuana was legal! I'm on pain meds, anxiety meds, depression meds, blood thinner meds, neuropathy meds, - I wish I had the ability to legally try marijuana - maybe I could stop taking handfuls of pills.

I'm having trouble sleeping - usually I take a benedryl and it knocks me out - but it hasn't been working - even the pain meds won't make me sleep. I tried Ambien - I tried it once and I'll never take another "Sleeping aid" ever - except the benedryl.

I go to CTCA this Sunday for my second opinion. People think that if you aren't getting treatment then you're giving up - it makes me so angry - I don't want to die! But sometimes there is nothing more they can SAFELY do. I'm very interested in what CTCA has to offer. I spoke to an ovarian cancer patient currently getting treatment there and she said her experience has been great - quality of life is factored into everything and she feels respected. I didn't want to go there because I was afraid they would try to strong arm me into risky surgery or treatments that will do little good.

I'm determined to make the decision that I feel is best for me.

catwink22's picture
catwink22
Posts: 239
Joined: Sep 2009

Hi Mary!

I’m very happy to hear that you and Luann are in counseling. This will help both of you together and each of you deal with your own battles. Also it’s great that you are reaching out to other people for information, that’s what I was trying to say when I said “turn over every rock”.

Not to suggest that you do anything illegal, but who would know?? ;>) Are you feeling up to a glass of wine or a cold beer if health wise it’s ok? Might help you to sleep. I don’t know how well Chamomile Tea works, but I’ve heard that helps too. Have you thought about Holistic medicine? Some people swear by it, I personally have not tried any of it, but I’ve thought about it.

Keep that determination Mary. It’s not fair to let anyone force you into anything, it is your body and ultimately only you will pay the price for the choice that is made, but you need to choose wisely.

I wish you the BEST with CTCA, I am saying another louder prayer for you!
Cat

emotionalpond
Posts: 22
Joined: Oct 2011

Hi Mary,

I just wanted to give you an insight on these bags.........

I am the caregive of my partner that had stage 4a cervical cancer. The cancer invaded her bladder and left her incontinent. It also pinched her tubes from the kidneys to the bladder. The hole will never ever fix itself and with the radiation damage it is impossible to fix. Her kidneys were it hard and only funtion at about 30%. She has to have tubes in her back that drain into bags on her legs. We were hoping and praying that she could get a stoma in which is like a bladder on the outside of her stomach, but unfortunitly it seems not to be an option, so at 38 my partner is stuck in a diaper and tubes in her back for the rest of her life. But to be very honest, I'd rather them in and her alive then not. They are anoying but they don't stop us from living. We do mostly everything we used to other then she can't swim.

Please don't take any offence to my post as I'm not trying to say what you should do, just trying to let you know that it's possible to have a life with tubes and bags. :)

Jenn
:)

Mary1024
Posts: 17
Joined: Apr 2012

Much to my relief CTCA didn't recommend surgery. They said surgery is only done when the cancer is localized, once it's spread that option is off the table.

The Dr at CTCA recommended Avastin to try and stabilize the tumors. She said that this chemo has light side effects, is much easier on the body. So I said yes and recieved my first infusion last Thursday. The way she described it is that the tumor in the vagina will not only get bigger, but will burrow it's way into all the surrounding structures (ie: rectum, urethra, etc.) creating fistulas, which would cause lots of problems.

It was still a hard choice to make. My Dr, is a cancer surivor herself, so she understands the issues first hand.

So far the side effects of Avastin have been dry mouth, exessive thirst, pain/rawness in mouth and tongue, fatigue, headache, nausea, and itching from head to toe. Not too bad compared to Cisplatin, Carboplatin and Taxol. Dr guess-timates that I have 6-12 months, but stressed that was just a guess - they have no way of knowing for sure.

catwink22's picture
catwink22
Posts: 239
Joined: Sep 2009

Hi Mary,

I am relieved to hear that CTCA was able to help you and understand your wishes. It’s also a good thing that you are receiving a treatment that you are comfortable with. How long will you be receiving the Avastin? Have you ever tried “magic mouthwash”? It’s a prescription to help with mouth pain, I don’t know how well it works, but it’s an option to try.

There are many many people that have been told they have 6-12 months, and years later they are still here. I’m not saying put your head in the sand, I’m saying don’t let anyone put a number on you. Although having said that, it seems the warning buzzer has sounded and that means make every shot count. (How about booking that trip to Hawaii?)

I can’t imagine the range of emotions that you must be going through and please know that the things you aren’t able or don’t want to say to Luann or your loved ones you can say here.

I hope your treatment goes well and please keep in contact if you can, if you are not able to I understand.

Big HUGS
Cat

beacon
Posts: 82
Joined: Apr 2009

hi mary

i have only had skin cancer..nothing serious, and nothing at all like what you are facing, but i was reading your posts, and it touched me reading your story...
what a fantastic partner you sound...and i was wondering, if you might somehow get that chance to take luann to hawaii one last time, like you wanted,even if its not in november??
would one of your friends be able to organise a little collection or fundraiser to make that happen for you?
i was just thinking that would be lovely if you had the chance o have some mre happy memories in your special place together again?

anyway, just a thought..
i hope your coming months are filled with love and happy memories!

willendorf
Posts: 14
Joined: Apr 2010

Hi Mary,

I wanted to reach out to you as I read through your posts, it's been awhile since I have been on but I was struck by your them. My partner had a different cancer; large cell neuroendocrine carnoid, but had the same chemo treatment plan it sounded like you have had. She had two rounds of chemo, but got an allergic reaction to the carbo platin during the second round. She also did two rounds of radiation after the chemo. Melissa died December 29, 2011, after some complications with her lungs due to the second round of radiation. I wish I could say something perfect and right but you know that it isn't always there...do know that you are supported by people who don't even know you who are sending love and goodness to you. I saw her live through treatment and was with her until her last moments so I have some understanding of what you are dealing with, though that's easy for me to say as I was the one without the fatal disease... I can understand where your partner is, too. We were madly in love, and living in a house in her name. I am making an offer on a new house this weekend. Such a mixture of sadness and excitement.

Doctors don't always know everything but neither do we. The only thing I know is what love is and what it means in life. Love each other as best you can cuz this could be the only life we get. Real love gets through even the yuckiest stuff and here's the test. ALL of my love is going to you and yours....

Peace and goodness,
Jill

Mary1024
Posts: 17
Joined: Apr 2012

Dear Jill,

Thank you for the love and concern you are sending our way. I'm so incredibly lucky to have a partner who is by my side come what may, as well as family support from both sides. I'm so sorry for your loss. Your partner undoubtedly wants you to have the best life and boundless happiness. So, never feel bad when are able to laugh and enjoy life!

This morning I'll have my third Avastin infusion. I have no idea if it's working, other than my tumor marker being down a bit. However I've been told that markers are not a reliable way to tell if the chemo is doing the job. I'll definately be asking how many more treatments until we know with certainty if chemotherapy is making any difference.

I'm on unpaid medical leave from my job. Which means I'm an employee in name only. I don't draw any type of pay, however they still provide insurance coverage for up to a year. My partner injured her shoulder so she's been off on medical leave as well, leaving us in the red.

I went to the Illinois Dept. of Human Services to see if I qualify for any type of assistance. Looks like I can get some food stamps. They also advised me to apply for Social Security Disability, and said that if I get approved for SSID that I may be eligible for other types of help. There is no reason to feel ashamed, but I do.

My boss had previously offered a vacation to my partner and I - anywhere we wanted to go in the U.S. She also offered some other assistance. After the 3 time she offered, we accepted. Now the time is at hand and she will not return my emails. I only accepted because SHE was insistant. We were so excited. We also saw a lot of "friends" dissappear. You certainly know who your true friends are when facing a terminal illness.

Julie061
Posts: 18
Joined: Jul 2012

Hello Mary,

You haven't posted in several months. If you are still fighting, I wanted to talk to you about CTCA. I have been a patient there since 2007.

Prayers to you.

Julie

Mary1024
Posts: 17
Joined: Apr 2012

Hi Julie,

Yes, I'm still here and fighting! I'm a patient at CTCA in Zion IL. I can only go by my experience, but I would recommend CTCA to anyone. I see Dr. SybilAnn Williams and she is great. I Think I'm a bit different from most of the CTCA patients - I'm no longer hoping that chemo will cure my cancer. Now, I'm looking for a good quality of life and some more time. My Dr always tries to talk me into aggressive therapy, but she also respects my decisions. I'm no longer on Avastin, Dr wanted to try Doxil (no way!) - after I told her that I didn't want further chemo, she suggested I try hormonal therapy. That avenue seems worth the benefit/risk ratio.

I've been having some bouts with sleep walking, will hold conversations, and the most troubling thing - I was taking medications while asleep - my partner caught me before I took several pills. We now keep the meds out of my reach when I'm suppossed to be asleep. It's been several days now and I'm feeling much better. We also had an MRI of the brain, which was clear. I'm guessing it's all due to stress.

I've applied for social security disability - a very nice lady at the SSI office said that she would fast track my application, but it would still be months before I receive anything. I've applied for what benefits I can. I have zero income and my home is in foreclosure - oh well - I'm sure there are lots of us in the same boat.

Hope everyone is doing good.

Julie061
Posts: 18
Joined: Jul 2012

Hey Mary,

I hope this finds you having a good day. Dr Williams performed my radical hysterectomy in 2007. She is such a kind and gentle physician, and is an amazing person. I have been going to CTCA Zion since 2007. My cancer originated in my appendix in 2004. CTCA saved my life in 2007, I now have a gold leaf on their tree!

My last round of chemo included Avastin, I didn't have as many side effects as you did. My insurance company denied payment for it, said it was experimental, so I applied to Genentech and they will cover any of their drugs I take in the future 100%.

I applied for SSD last year when the side effects of treatment inhibited my effectiveness at work. I worked through the first two rounds of surgery & chemo in 2004; and then surgery, radiation & chemo in 2007. For me, it was just too hard to fight my cancer mets, now an incurable stage, while still working. SSD approved my claim in 2 weeks. I think my first check came within a month. It was extremely fast and an easy process. CTCA does a great job completing their part of the paperwork.

See if your natural path has any suggestions for sleeping. It is great to have such a fantastic team on your side.

I am very sorry to hear that your home is in foreclosure. Like you need that stress right now especially;( Through the years, my financial status has been like a roller coaster ride. It is a shame that cancer can ruin so many people financially. They have cancer insurance, but who has the foresight or the extra money to purchase it;)

I hope you are able to find a resource for financial help. If I see anything, I will certainly send it your way.

I will be at CTCA on 8-8/9 for my 3-month scans (Great results;) nodules stable and CEA 2.3!!). Could be that I may run into you sometime. I am originally from IL and visit family when I go to the hospital.

Take care and hopefully talk again soon. You will both be in my prayers.

catwink22's picture
catwink22
Posts: 239
Joined: Sep 2009

Hey Mary,
This popped into my mind - can you go on disability instead of quitting? That would give you the freedom to spend your time as you wish and still have some money coming in. Just a suggestion.

Thinking of you,
Cat

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