CSN Login
Members Online: 0

You are here

My Husband My World - by YROSS

manapart's picture
manapart
Posts: 67
Joined: Feb 2019

"My Husband My World is falling apart, I can't breathe..we had so many plans and yesterday we were told CEA is 3010, after Scan Mayo tells us the cancer is growing along with new spots, mostly in liver and left lung...he had emergency surgery in oct/2017 has only had 6 weeks off of chemo, last line of therapy is ironatican and they indicate if we begin on Tuesday he will have 2 months to live that is with this aggressive treatment.  My Husband went from weighing 185 and now down to 130 pounds.  He is so fatique that he cannot get out of bed.  Dr. gave us no other options other then a hand off to hospice.  I am so sick about knowing that what we thought would be 5 years has turn into less than 2 years.  I do not trust these doctors, I beleive something went so wrong when he was getting treatment in the fall he had rigors and then we end up in hospital with a collapsed lung I know chemo created this, he has not been right since.  I am so angry with Mayo, We have had one problem after another from the very start, I could write a book.  My husband was so healthy he should have had at least 5 years.  They have costed us more time.  Does anyone have any ideas?  I feel like hospice would just be giving up after all that we have been through. He has followed all the rules including diet.  I feel like we are being lied to.  Thank you "

 

 

*** this post was posted in my thread by a first time poster and I thought it deserved to be placed in the main page so it can receive as much feedback as possible from the great members here since my thread is a bit old. I hope YROSS sees this. Best wishes. 

Joan M's picture
Joan M
Posts: 411
Joined: Oct 2016

It's really sad to hear about  your husband.  You must understand that responses from chemo can be so different among patients.  The exact type of cancer also matters and he probably had the genetic testing done on his tumors after surgery.   Your husband's cancer may have mutated and became more aggressive than originally known. 

My oncologist says  he has many other meds to try after irinotecan stops working for me.  I know that the doctors at Mayo have access to all the same meds and more than the small clinic I get treated at.       

I have been a patient at Mayo clinic in Rochester Minnesota and felt that the treatment I recieved there was top notch. It's hard to imagine anyone not being treated well at Mayo, but I will take your word for it.

When I was diagnosed, the stats said that only 5% of stage 4 patients would survive 3 years.  I have just reached the 3 year mark.  That statistic has gone up to 14%.  Of course that means the majority die and often within 6 to 18 months of diagnosis, which was how long I was expected to live according to my doctor.   I've been sick and hospitalized a few times for various reasons but have survived so far.  I know that my health is very precarious and things can go downhill very quickly.   I am very grateful to be alive and doing relatively well under the circumstances.  With that said, I know that I could die suddenly due to effects of chemo on heart and also that the chemo could affect my blood marrow to a point that I can't take chemo anymore.  So far I am surviving the chemo and will stay on until it stops working for me. 

I've heard of 31 year old athletes with stage 1 or 2 cancer that were supposed to be quite easily cured, dying after one treatment.    I don't know why one person survives longer than another.  Why some are cured and others die.  Cancer is like a tornado, it hits without warning and leaves those in its path devestated, while one may survive, the next may die suddenly.  

Truth is many people I know or who live in my community and were close to my age and even younger have died from causes other than cancer both before my diagnosis and since my diagnosis. Car accidents, heart attacks, drug overdoses, etc.  I no longer feel sorry for myself battling cancer and believe me I went through the anger, depression, and all.   I'm happy to be alive and yes, I am afraid to die, even though I know we all die and my time will come sooner than I'd like.  The thought of hospice and funeral planning is depressing and frightening.  But still I fight the battle and enjoy what time I have.  

Praying for your husband to regain his strength and have more time with you and other family members

Joan 

  

YROSS
Posts: 17
Joined: Mar 2019

Thank you for your prayers and thank you manaprt for helping me post I am new at this....wish I would have seen this 17 months ago. He is now in pain told our sons todayCry They are really having a tough time understanding how quick we are at the EOL.  57 years young and healthy, they claim it was not genentic which i find strange since his father had colon cancer and his niece and 1st cousin.  My husband is an athlete has been his entire life, he believes it was caused by his blood pressure medicine that he has been on for 20 some years, Valsatarn, probably misspelled but i have since learned that the FDA pulled it off the market.  He does not want ironitican due to the side affects have been problematic, especially diarehiera.  Doc says he will have this side affect regardless.  When asked how much more time this would give him, he said 2 months.  How could that be?  Why would someone go through 4-6 round of agressive chemo for the same timeline?  Appreciate any and all feedback.  Thanks Congrats on 3 years Joan :) 

Annabelle41415's picture
Annabelle41415
Posts: 6518
Joined: Feb 2009

YROSS I'm so sorry to hear of your husband and can totally understand how devestated you are.  I'm not able to help with any suggestions except possibly a second opinion.  Sometimes cancer can spread so quickly even under treatment.  I'm praying for you and your family.

Thank you Manapart for reposting this.  It shows how terrible this disease can be to the ones it affects.

Manapart good luck tomorrow at the oncologist and hope you get some answers that you need.

Kim

YROSS
Posts: 17
Joined: Mar 2019

Thank you Annabelle you are so pretty :) Need prayers.  

Butt's picture
Butt
Posts: 354
Joined: May 2018

Cancer is unpredictable and hard to treat., The fact that someone who is young and in good health makes initial treatments more feasible In comparison with an 80 yo. who has a bunch of pre-existing conditions. Despite this fact, many young folks die from this disease. For some it may be a few months, for some 2-3 years. I don t know what doctors told you in Mayo Clinic. I guess if there were issues from the beginning as you indicated it could have been a good idea to change the clinic. Doctors don t just seat there and lie.  They take the Oath and take it very seriously. They exercise there professional judgement with respect to their education and training  and with cancer it is very hard to know what will be next. Lie to patients? Good luck with that one. They know very well that they may seat in front of the board with well seasoned experts in thei field and have to explain themselves. The worst nightmare!!!!!!!!Oh, there is also an ethics board...... They may have another doctor on call from their practice who will read those notes if there is an emergency situation. Very embarrassing to look like a stupid donkey. They take notes usually during or after seeing the patients. In order to avoid the story he/ she said you May request those notes. I randomly request them from my oncolgyst that he doesn’t know about. There is no BS. He writes the way it is. Butt. 

YROSS
Posts: 17
Joined: Mar 2019

I have acces to his patient portal and see all the notes.  I just feel like we are throwing in the towel too soon.  I called Cancer Center of America to see how fast he can be seen.  Going to Hospice and having him drugged to his death just does not seem right. He is tough and i just do not understand.  Read so many stories of hope for stage IV.  I cannot live without him so I want to be sure that I have enough people that understand what we are being told in hopes that someone else maybe had a similiar experience.  They never told us a time frame until now. Dr. said average was 5 years.  It has been 17 months with one break of 6 weeks. he was also taking xeloda and avastin, I swear I beleive that combo just spead up the cancer growth.  I noticed him going downhill in 3 weeks.  

Joan M's picture
Joan M
Posts: 411
Joined: Oct 2016

I am now on the 5FU which is what Xeloda turns into after your body metabolizes it.   The doctors are giving an estimate on his remaining time.  I don't know how accurate that would be.  3 years ago, I told I had 6 to 18 months. 

I know the chemo can cause problems with bone marrow and also heart, liver or kidney problems, and could be why he got so sick and lost all the weight.  Has  he had Y90 or any ablations, radiation or surgery to get rid of tumors?  

Your husband could recover from this and have those extra years.   Janjan on this site was really sick for quite along time, she says she didn't even want to get out of bed or get dressed.  Now is talking about cooking dinner and driving herself to her own doctor appointments.  I agree with you about not wanting to be drugged by hospice until you die.  I think the pain meds like morphine speed up the death.  They slow down digestion and make you constipated so you can't even eat.  I do not want to go out that way.  

 

 

YROSS
Posts: 17
Joined: Mar 2019

Hello Joan~ his heart is strong kidneys too I beleive the Xeloda is the problem it made him so sick/nausea upset stomach 24/7 even on his off week.  What is Y90? Radiation has never been an option I have asked and they never explained why not?  His tumor from his colon was removed in 10/2017 had a successful surgery.  How can he recover from this? 

Joan M's picture
Joan M
Posts: 411
Joined: Oct 2016

Y90 is a form of radiation that is used to treat various forms of cancer.  It is commonly used to kill off inoperable tumors in liver cancer and when other cancers metastasize to the liver.   An Interventional Radiologist will  inject mmicroscopic beads (also called theraspheres) that are filled with the Y90 radiation into your hepatic artery where they travel to the tumors and cannot escape the tumor so they radiate for up to 60 days and kill the tumors off.  It is an outpatient procedure but does require anesthesia.

In my case, I had 20 tumors in my liver - with about 17 in the right lobes.  I had the Y90 in April of 2017 and my liver is still clear of tumors.  While some people have problems with the procedure, it is usually an easy recovery for most people.  It was easier for me to tolerate than chemo and my liver has been clear of tumors since.  (Side note I was on the Xeloda and Avastin maintainence chemo the time).   ABout a year later, they thought a new tumor had formed in the right lobe, but an area of liquid had formed in that lobe caused by necrosis of those tumors.  That was drained at the Mayo clinic April 2018.  

Microwave ablation was used to kill of 3 tumors in the left lobe of my liver that were close together. I had the ablation on liver tumors in January of 2017. The Interventional Radiologist inserts thin needles into the tumors and blasts them with microwaves to kill the tumors.  This kills them instantly and leaves an area like charcoal in the place of the tumors.  The liver will regenerate in that area.  This is also an outpatient procedure.  I had problems with blood pressure due to some of the anesthesia and was admitted overnight for observation. 

I also had 12 tumors in my lungs. One was over a centimeter, so I cryoablation on that lung tumor in September of 2017.  The IR doctor places a needle through ribcage and uses a freezing agent to kill the tumor.   I coughed up blood for a few days. and had a collapsed lung because I was lifting too much and also cleaning the garage out.  Collapsed lung is one of the risks they warn you about.  I had no symptoms of collapsed lung, just a little short of breath.  They found it because I had a scheduled CT scan a couple of weeks after the ablation.  I was in the hospital a few days for them to insert a chest tube into pleural cavity to reinflate my lung.  

Unfortunately I had gallbladder problems and was off chemo for months due to waiting for chemo to clear so they could operate on me and colon tumor and my lung tumors increased in size.   I then needed to stay off chemo to have colon resection which allowed the lung tumors to grow even more.  

Radiation is usually not used if you have tumors close to arteries, bronchial tubes, or other sensitive areas that would impair organ functions.  In my case, they won't radiate any of the lung tumors because I have them in almost every lobe and it would damage "too much lung real estateand cause breathing problems" as my doctor put it.  They may use radiation on one hilar lymph node but it is close to arteries, so my doctor recommends against that too.   

I believe the procedures I went through have extended my life overall.  My husband thinks they damaged my gallbladder and that the subsequent time off chemo and growth of lung tumors may have caused me to have an overall shorter life.  I guess it remains to be seen how long I live, and there is no way of knowing how things may have progressed if I hadn't had those procedures.  One of my oncologists said the chemo would have killed off the tumors but just taken longer.  As I said, I really don't know.  

Your husbands situation is a unique case, and he may not be eligible for these procedures.  It is probably worth talking to the doctors about.  

Why aren't they using 5FU if the Xeloda isn't working and causing such upset stomach? 

beaumontdave's picture
beaumontdave
Posts: 1056
Joined: Aug 2013

I'm sorry that it's progressed the way it has, we knew how stressed and scared he was, and now what it's doing to you is so unfair. If it were some local hospital, we'd recommend better treatment centers, but the Mayo Clinic is considered top notch, though I'd resist such a prognosis as well. Chemo is such a hit-and -miss treatment, and we need better, and both "better" and some peace are things Ihope for both of you....................................................Dave

YROSS
Posts: 17
Joined: Mar 2019

Thankyou so much for posting for me :) Good Luck to all of you.  

Canadian Sandy's picture
Canadian Sandy
Posts: 628
Joined: Jul 2016

Prayers for you and your husband sent. Keep the faith!

 

YROSS
Posts: 17
Joined: Mar 2019

Thank you met with doctor today they only offer what will not work for him.  He is in so much pain.  I cannot beleive how fast this is happening :( My sons are devastated I can't breathe and still have to work, Sandy my husband is canadian too...love him so much he is the love of my life, not sure how I can live without him.

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

I'm so very sorry to hear of what you and your husband are going through. How devastating. You must both be in shock. I'll weight in with my two cents and hopefully can help a bit.

First, so they said he only has two months either way? Whether they treat him or not? That sounds fishy. You mentioned Xeloda. For the record, it did nothing for me. Too bad because it was the easiest chemo I've been on but I understand it can be hard on other people. 

I am currently stage 4 with mets to both lungs, my liver, and a reccurrance in my colon. Most are pretty small but there's one big one taht doesn't respond to treatment. Hopefully this time it will but it shows how oddly cancer and the treatments work. 

I was diagnosed just over 5 years ago and I'm not going anywhere anytime soon. My original surgeon had suggested I'd get over ten years, probably thirteenish. Since it's spread my onc has suggested 8 to 10. I feel that they're making progress all the time and there just might be a good treatment before I clock out. The point is, nobody ever told me that I'd be lucky to have five years or less.

I am currently on an immunotherapy 'chemo' and it works great for me, other than the one that won't respond. I'll likely be a cancer for lifer with regular chemo every 6 months or so. To keep it at bay but I'll never get rid of it. I'm okay with that. Going through the chemo crap I'm going through right now isn't fun but it's better than letting it get me.

My understanding is that they don't treat unless there's some hope of improvement. If a person is hopeless they do nothing. But all doctors are different so maybe I'm wrong. I know that if or when I get to that point I'd rather just be comfortable and not be poked at or given chemo. Why would anyone choose that if it's not going to help?

As mentioned, I've been so sick that I was almost completely bedridden. It's depressing and scary. It sucks the will to live. I didn't want to live if I was going to be dependant on others for every little thing, lying in my bed with no life at all. At Christmas my daughter bought me a used wheelchair to go shopping in and I was still exhausted for days after. Today I went to Wal-Mart with my husband and was able to walk out with him instead of having to wait in the car or going to the car partway through. I've had 4 treatments so far and was taken by wheelchair for the first one in early January, walked on my own but was wobbly for the second, walked more upright and quicker for the third, and was walking briskly for the fourth. Of course we all have different situations but I'm hoping to give you some hope for your husband. And I've heard of people that nobody thought would have made it doing well months later.

Doctors are not the be all and end all of things, either. I have a great onc and surgeon who are optimistic and realistic. But I've experienced a couple who were awful. My radiologist told me two summers ago that he wouldn't do radiation on my again because of all the internal adhesions it gave me previously unless I was in palliative care and it was for comfort. I was so upset I threw up all the way home, a 45 minute drive. Also, about two years ago I had en emergency doctor tell me he wouldn't do surgery on me because when he's done that on people like me they're usually full of cancer and he just closes them back up. I was there for a blockage. At the time the only mets I had were in my left lung. Also, I had a blood clot go to lung almost  ayear after diagnosis and the neurology expert told my family they should let me go because I'd never be the same mentally and would be in a care home if I survived. They refused and it took a long time to recover but within a year I was working again. 

I'm not an optimistic person, I'm more of a realist rather than pessimistic. But I feel that as long as we're here we have a chance. And we must have hope. To not have that is to have nothing.

I hope your husband gets well and this passes. That they can help him or at least help him live longer with good quality of life.

Take care,

Jan 

YROSS
Posts: 17
Joined: Mar 2019

Thank you for your story I am really so happy for you.  He is also stage 4 colon cancer that moved to liver and lungs.  I thought the same that is why I have lost trust.  My husband is bedwritten 2 days after he was told about the spike in 3 weeks,.  At first I thought it was his will to keep fighting to stay alive but I can tell the pain is real as he never complains about it.  I am the realist and he is the most optimistic person I have ever known. I feel like we missed the right path for some reason.  We have had 3 horrible doctors in my opinion I just can't see hospice as choice so soon.  He is in pain so he is not thinking in the right mind. Jan do you mind sharing your dr. name?  Thank you enjoy your life every day.  I am not a weak person but watching your loved one lose their hard working life right in front of your eyes is torture.  just looking for a glmmer of hope so we can try to keep him for a longer time. 

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

I'm in Canada so it probably wouldn't be helpful but if you really want to know I'll message you.

I can tell you that I deal with fatigue and weakness every single day, some more than others. I have to take supplements for dehydration and I think that's helping a lot. But I still throw up every few days suddenly out of nowhere and get tired easily. Sometimes I go to do something and find I'm too weak and it reminds me not to push too hard. I'm proud of myself when I manage to make dinner and even clean up afterwards. For some reason I sleep alot. 10 hours a night. I'm telling you this so you'll know what's within the category of normal. I realize your husband is very ill but some of what he's going through might be something not to worry about. When I was on 5FU shortly after my diagnosis I would just lie in bed all day staring out of the window. The fatigue was terrible.

Oh boy, why can I not post anything short? I guess I just want so much to make people feel better about all of this and to have hope.

Hugs,

Jan

YROSS
Posts: 17
Joined: Mar 2019

Can I IM you on this website?  Thank you.  I am canadian by marriage.  He is from Calgary,Alberta....the man of my dreams like my sister says he is still your boyfriend after 24 years and 11 months.  Our Anniversary is 3/27/19.  Praying for a miracle every dayFrown

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

I just sent you a message on here.

Twinzma
Posts: 226
Joined: Jan 2018

I am so sorry honey I hadn't really seen your post. My husband is also the patient....and it's not easy being on this side. We don't know what they are thinking half the time, nor do we know they are really feeling. Our life is out of control. Here were were happy as clams expecting to spend the rest of lives with this person and then some uptight stranger we hardly know shatters our dream by telling us they have cancer. It's not fair, it's not supposed to be like this. Oh and to salt our wound further like mine, your husband is so young too!  It is a nightmare we can't wake from, but yet day in at day out we are still in this and it doesnt' stop. 

There are days I blame myself and that I know I never will stop doing. He had a clean colonoscopy for routine testing and was told to retest in 5-10 years, it was 7 when he was diagnosed. Damn it to hell, if I didn't push him to go at the 5 year mark. After all I would have done it for myself, why did I not make him? Maybe if I would have paid closer attention to how long he was in the bathroom all the time, instead of brushing it off as the only quite place in the house I would have thought he may have been sick and it wouldn't have progressed this far. But the more I think this way the more it put's me into the dark place of depression and anxiety. I can't do this, my kids need me. So then I start to think well, when it's our time it's our time, there is nothing any of us can do. Maybe it was a blessing that we know I mean he could have been taken from me in a car accident or a massive heart attack where we wouldn't have been able to say goodbye. I don't know how long he has, there are days I think he can go on forever, then there are days it is getting to me those statistics in the back of my head it may not be all that long. 

Your husband has a wonderful woman behind him. Believe me, I know it's not easy coming here and pouring our heart out. I mean the first time I posted I felt so odd...nothing but random strangers and all. But these random strangers are so amazing here, they share everything, they are caring and wonderful! They have helped me so much and I know that they will help you to. We are blessed YROSS, to have found them! You are doing the research for him, you are fighting for him you are his biggest advocate. As he is your world, you are is.

Like snowflakes each patient is different, what works for one won't work for the next. Which meds make one sick may not effect the next at all. Throughout treatment my Jim has done very well. The only really symptoms have so far been tireing easy and a severe rash. His oncologist jokes that his modeling days are over. He started on FolFox with Avastin dec 2017, there was a slight uptick in cea he was switched to Folfri with Erbitux in March of last year. He started the chemo pill in Sept when we started looking for surgical options, to wit there have been none so he had the y-90 done Dec first treatment went very well. They treated the bulk of the mets which he carries mostly on one side of his liver there were 28 on that side. On Feb 14th they treated the last 2 mets on the other side, yeah 30 flipping mets in all. This time though something is off. He has been in a lot of pain, something his has yet to complain about. We were told post op pain was normal because the liver does inflame but it is still going on now..2 weeks are normal this isn't right. So tomorrow we see the doctor again. I am really worried, thinking maybe a bead has traveled somewhere else in the gastrointestinal track. 

The y-90 is not really a curative treatment. In theory it could kill all the mets, but in reality the expected and typical outcome is shrinkage, hopefully to the point the patient becomes surgical or allowing other therapies to do their job. It's my husbands best shot at any meaningful survival. As the surgeon told us so bluntly, it's not the colon cancer that will kill my husband it is the liver. Why couldn't we have caught it in time???? My kids are 13 now, they need their dad! This sucks!!! 

I suspect the reason why no one has spoken to you about the y-90 yet is because he has the mets in the lungs. I think that those have to be treated first. I say that because had my Jim had mets anywhere else it would have deemed him not a candidate by his doctor. If I were in your shoes, I would try to consult with a surgeon that specializes in lung cancer to see if they can treat that. 

Honey, look I know you are so scared, I am too. They are our life, if something were to happen.....yeah this really stinks! Try to keep your chin up, step away from Dr google from time to time and above all take care of you too. You are not one bit of good to anyone if you break down. I know you have been in this for a while too but we need that constant reminder because frankly we just don't do it. Hugs!!! 

 

YROSS
Posts: 17
Joined: Mar 2019

for such a wonderful response, you made me feel special....no one sees what we go through as spouses and caregivers breadwinner etc....he had such a small lung spot it grew due to the rigors :( Mayo did this to him the day of his infusion they did not know what was wrong we ended up in the hospital with a lung that was surrounded by maliginant fluid, this I know is a side effect from chemo :( they drained 3 liters worth and then they had surgery to insert a Pleurex I had to drain it daily for 4 weeks what a set back!  I know the rigors set the cancer in full speed and the work it took for him to breathe normal again.  If this was not bad enough his next round it happened again.  My husband has been through so much and after journaling I realized just how bad it has been from the emergency stat removal of the tumor 7 inches went with along with lymph nodes and appendix, he thought it was appendixcites :( I think back and how I wish It was.  I received a phone call during a board meeting and my life has been in a talespin since 10/17 the worst day of my life. Thanks for the y-90 101 no one ever mentioned this.  Not sure why the liver has the most.  Thank you for your time and kindness.  Hospice came today  I can only succumb if he must, as long as he is comfortable at home that would be my wish up to him...I sent a request for another opinion, Cancer treatment Center of America will conduct an evaluation.  When I asked him intially he said no when Hospice came he realized that once the drip starts he will no longer have his wits to have quality of life or a real conversation.  Still have hope for some reason, not sure why.  I also suffer from guilt because since child birth of my second born at the age of 35 I had irregular bleeding, because of this I had a colonospy every 5 years to be on the safe side. it was a basic fichers which was great news.  I remember asking him at 45 to have one and he said he would at 50.  50 came and i forgot about it :(  55 hit and I said why have you not been screened?  He said he would and 2 years later as he was golfing he had a horrific pain in his right side....I should have been a jerk until he did it.  I still blame myself for not standing my ground.  This lesson learned will I know shorten my life.  13 year olds are awesome!! I hope they spend time daily with your husband and that he enjoys every second with them.  My boys are 30 and 24 when he told them they looked like they were young boys again.  My heart has been shattered since.  Good luck at your next visit.Take Care 

LindaK.
Posts: 494
Joined: Apr 2013

Hello, I come on here occasionally and when I read your post, I felt I had something to share that might help you.  My husband passed away 4 years and 4 months ago.  He was diagnosed in December 2012 with stage 2 colon cancer.  He had emergency surgery to remove 2 feet of his colon.  He followed up (not willingly) with 6 months (12 treatments) of Folfox.  He had a lazy incompetent oncolcogist and that included most of his staff too.  Within a few months, he was having trouble again.  He went back to all his doctors, had another colonoscopy, no scans, oncologist said he didn't need them.  In January, 2014 he ended up back in the hospital, another emergency surgery to remove a new large tumor in his small intestine.  After lazy incompetent (yes I'm still very angry) oncologist finally came to see my husband in the hospital (where he was for 21 days) and oncologist's office is attached to this smallish hospital.  He said very accusatorily "Well, now you're stage IV"  Talk about dropping a bomb!  As soon as he got out of that darn hospital we switched to a larger, more hopeful and much more caring hospital in our city.  He started FOLFIRI the next day and a PET scan was ordered that week.  His cancer had also spread to his lymph nodes distant from the colon.  It was like day vs. night compared to the other dumpy place he went prior.  Things did not go his way, one issue after another, several more hospitalizations and in September, 2014, they told us the dreaded "There's nothing more we can do"  It is the most devastating news when we've been through all we've been through as caretakers.  My husband passed away at a wonder hospice facility 6 weeks later.

My advice to you - take off work starting now, take a leave of absence, FMLA (if you have it) or without pay.  I wish I had taken more time off instead of running myself ragged back and forth to work.  I also did not expect such a fast decline and was probably still in some sort of shock myself.  Also, looking back at his medical records, our daughter (who is a nurse) and I both believe his cancer was more aggressive and fast growing than they ever told us.  He had been having colonocopies every few years since he turned 50.  He had several polyps removed but none were ever cancerous (or that we were told) so for him to grow a large tumor in under 2 years, I believe he had a very aggressive cancer.  Also, looking back, what did we know about where to go and who to trust?  We followed this doctor's suggestions and treatment.  I wish we hadn't but you can't go back and change things.   Even if we had gone to the larger cancer center, would things have turned out any different?  We'll never know.  My husband came home on home hospice care for about 4 weeks and then I had to take him to the facility where he was for 11 days. I could not care for him at home anymore because he was falling and we couldn't get his pain under control.  Hospice was a relief for me also, it let me be "the wife" and not the caretaker.

I cannot say if some other cancer center or doctor can prolong your husband's life, no one really can, but you should ask him what he wants to do or maybe you already have.  It's very hard to watch our husbands be ill and in so much pain.  I really hate cancer.  You have both been through so much in a short time.  Sometimes we just have to deal with what life gives us.

Peace,  Linda

Trubrit's picture
Trubrit
Posts: 5180
Joined: Jan 2013

It is always good to see you pop back to the forum. 

I can't believe it has been over 4 years since you lost your love. 

I do so hope life is treating you well. 

Tru

YROSS
Posts: 17
Joined: Mar 2019

Sounds very familiar we have only been 18 months into this had emergency surgery removed 6.5 colon to remove tumor. From the very beginning he has had one problem after another beginning with a defective port.  The only way we knew this was he had a blood clot that was the size of a lemon on his forearm I noticed it even after justhaving a colonoscopy myself drugged an all, I called a LYFT to rush us to the hospital.  What a set back!  removed and inserted a new one on the other side, after being put on a blood thinner to avoid future clot.  After 6 months he was taken off of it. I beleive with all the setbacks that is what has reduced his timeline.  Chemo creates all of these problems they are listed in the side affects. He wants to go for yet another opinion our appointment is on Wednesday, if the treatment recommendation is the same he will be done with treatment.  The last line they are offering is ironitican avaistin and Xeloda.  He is prone to having diarreaha and was told this will for sure be a side affect for him based on the history.  He said he is not interested on sitting on a pot for the rest of his life, because the Dr. told him that with this line of therapy it would only give him 2 months.  Says it does not make sense. I hate this ugly disease.  Americans are so intelligent I cannot beleive with all the funding to find the cure how this is so out of reach I will never understand. I want to be the wife...been everything for 18 months I wish we could just have our life back, it was a wonderful life. My heart aches I cannot take antidepressents so I will have to deal with allof this stone cold sober :(  How did you survive losing him if you don;t mind me asking.  Thanks for your story it is helpful.  Take care.  

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Don't beat yourself up about not encouraging him to go sooner. My symptoms were masked by my IBS and even when they wanted to do the colonoscopy I didn't want to do it because I felt fine. Now I look back and think how much easier it would have been to have one and have a polyp nipped out than what I've been through. I was actually scheduled to have a colonoscopy two years before my diagnosis but didn't go. Stupid, stupid, stupid. Hindsight is 20/20 as they say.

Thinking of you and hoping you can find strength through this. And I'm hoping for the best for your husband. I sent you a message. Maybe we can chat through there.

Hugs,

Jan

YROSS
Posts: 17
Joined: Mar 2019

Thank you Jan, appreciate your feedback, how are you doing?  He also had IBS :( they say his cancer was not genetic when then what caused it, is there a way I can be sure it is not genetic?  I have 2 sons and need to know what i can do and how early they are safe to perform this procedure.  you sent me a message where?  in the chatroom?  sorry new at this.  Thank you :)

Butt's picture
Butt
Posts: 354
Joined: May 2018

Your May want to go to a local hospice and interview them.

YROSS
Posts: 17
Joined: Mar 2019

not sure what you mean?  

myAZmountain's picture
myAZmountain
Posts: 335
Joined: Apr 2018

So sorry to hear your husband has a such a rough time. HIs story touches me as his cancer journey is so similar to mine...never had "time: for colonoscopy at 50 , pain in right side at age 58--cancer in cecumileum, omentum  thought was appendicitis etc.....laproscpic surgery to remove all and have lung mets remaining. I am praying he can regain some strength and energy and have pain releived so he can spend more time with you. Is he at Mayo in Phoenix by any chance? 

YROSS
Posts: 17
Joined: Mar 2019

is who treated him unsuccessfully, you are just a number there I have not met anyone who cares.  It was such a horrible expereince.  Don't let the brand fool you I was unimpressed with them from the very start.  My husband wanted to stay there.  I wanted to RUN!!! How are you doing today my AZmountain?  He is only 57 years old :( Family have been visiting him to say goodbye.  I have not given up yet.

myAZmountain's picture
myAZmountain
Posts: 335
Joined: Apr 2018

As soon as you said you got treated horribly at Mayo I knew it was at Phoenix....I went there last fall for a second opinion and the Oncologist was the nastiest young man I have met in this journey.We currently live in a very rural and not affluent area in western Arizona and I am sure he looked at my address and assumed alot of things....He essentially told me to measure for my coffin and don't plan anything a year out---And yet i only have one small met in lung left after pretty successful results from Chemo. Treated me like a throwaway and got a few insults in about my treatment plan from my small hospital here, even though our oncologist here spent years and years working for MD Anderson and is wonderful. I go to doctors in Northern Virginia as I send part of the year there with my daughters and the docs there are wonderfully optomistic! It seems so damn unfair that not only do you have to deal with the reality of having cancer but you have to worry about are you getting the right treatment at the right time by the right clinician--that one misstep can be the difference almost. I am 59 and hope and pray your husband gets better --don't give up!!!

YROSS
Posts: 17
Joined: Mar 2019

Yes you are so right.....most likely the same young man wish we could give names so no one ever sees him again.  I still cannot beleieve my husband ever trusted him, he was so arrogant with nothing backing it up...I wish I would never ever agreed to Mayo.  I feel like the misstep will cost him his life and I know i will never forgive myself for allowing it.  I should have put my foot down.  He actually told my husband that he was knocking on heavens door....OMG I was appauled he should not be praticing. I will be reporting him to the BBB and Mayo as well.  I cannot just let my husbands situation go by as if nothing has happened.  I am hoping my husband sees next month Godwilling. He also insulted prior oncologist as well.  Sounds like the same person :( Karma has its way of finding people like this.  It is so wrong.  I am happy you have survived Wish i could move to North Virgina, take care and thankyou for your feedback.  Blessings to you.

myAZmountain's picture
myAZmountain
Posts: 335
Joined: Apr 2018

Has to be same guy. He told me I was in the "December of my disease".  I told my family as we were leaving his office I was going to come back in 20 years to this smug little creep and tell him to  shove it.  Mayo Phoenix is a not even in the same league as Rochester.  My heart breaks that your husband suffered there, I only spent 30 minutes there thank goodness. Will be praying your husband turns the corner and starts responding positively to whatever treatment he is on....

LindaK.
Posts: 494
Joined: Apr 2013

Thank you Sue.  I can't believe it will be 5 years soon either, time does not fly when you're not having fun, ha ha.  I am doing fine.  Both my parents have passed in the last 2 years and my nephew and his wife lost their full term much wanted and loved baby boy 5 weeks after my mom passed.  Losing the baby seemed worse in many ways than losing my husband or my parents.  Such an innocent life lost with no explanation, such extreme sadness.

Life goes on for the rest of us and I'm looking forward to retiring in about 3-1/2 years! I hate to wish my life away but I'm tired of working and we all know life is short so I want to enjoy some time in my retirement doing things I want to do.  I enjoy seeing your love of the outdoors on Facebook, looks like a beautiful place you live.

Linda

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

YROSS, check the area on the page where there's a list of all the posts and there will be some small print near the top saying that you have a new message or something like that. It's not very noticeable. I've missed messages several times because it doesn't really stand out at all.

Your kids can use that non invasive test to start. I've also heard it's not genetic, I've heard that it was likely to happen because of the IBS but then I heard that's not true, I have no idea. I did read recently that they say that about 75% of cancer cases have no discernible reason for happening. 

Jan

YROSS
Posts: 17
Joined: Mar 2019

Thank you for your help!

parramos17
Posts: 2
Joined: Jan 2018

Get a second opinion  My husband was told to go home and just live the time he has .Called Dana Farber in Boston getting treatment the last 11 months feel there is hope always and keep fighting forward try every route  Call Dana Farber

Butt's picture
Butt
Posts: 354
Joined: May 2018

Typing from my cell, so there would be typos.....Your can t blame yourself.  Period. I requested the first colonoscopy at 4o because I have a family history but not Lynch. They found a small polyp but biopsy was negative. No symptoms. The doc had hard time to lift it because it was sessile polyp. Wanted to see me again in a few months. The polyp was there. She suggested a colon resection. Again, biopsy is negative. Scans showed a benign cyst and liver hemangioma that is benign. No symptoms. Finally, got a colon resection that went great a few month later. No rush. Boom. The pathology report caught cancer as they thought initially was stage 3 but scans showed whole blown stage 4. I even wasn t worrying about that pathology report. I knew it wasn t cancer, docs knew it, too. Wrong! The tumor was under the polyp. I remember my brilliant surgeon walked in a room for my follow up post surgery appointment. She always was very well composed. She looked visibly nervous. I didn’t make any deal if that. You know may be a bad day. I always addressed her by first name and she did the same. She suddenly looked at me  addressed me by an official title Doctor using my last name and told me I have cancer. I saw her hands shaking when she was giving me the pathology report. I lost it. She wanted to know if I want to read the report myself or I want to read it by myself. I was Not capable to either read it or let her read it. When she finally started to read it I could not in any way understand it. I was asking for oxygen because I couldn t breath normally. I was sweating.  That was the day that changed my life....Butt. 

Subscribe to Comments for "My Husband My World - by YROSS"