How fast it all changed.

John VN

DIS Cast Member
Joined
Aug 2, 2003
YES, things can quickly change. Hope things work out for the best.

I answered the phone and received the.... "You have aggressive cancer" that changed things for DW and me 3 years ago but we were ready for the revelation because I felt/knew that the biopsy would come back that way. Had a special scan last week and need another another biopsy with the same results expected.

My approach to life is.......Prepare for the worst possible outcome and nothing comes as a surprise. Either I will be correct in my expectations or pleasantly surprised at being wrong.
 

Bianca and Bernard

DIS Veteran
Joined
Jul 12, 2015
I'm just heading back to the hospital now where my husband was admitted on Wednesday. He went in with back pain, radiating around to the stomach. Suspicion was appendicitis - family doctor suggested he go directly to ER when he called for an appointment, as that's where they would send him. He had been dealing with it for a few weeks after he ran backwards into my car hard enough to dent it while snow blowing (don't ask) but after repeated visits to the chiropractor didn't change anything he finally went to emergency Wednesday morning.

Instead - scans have found a 1.4 cm mass on his pancreas, nodules on his liver. Today he is getting a bone scan because the x-rays showed nothing that could be causing the pain in his lower back. Could be the enlarged liver, but doctor 'suspects' more going on. They have said they 'suspect' cancer. Well yeah - me too given the findings so far. We've been assigned a social worker who has yet to put in an appearance two days later, and I doubt they send a social worker for a likely benign issue. However - we have to wait two weeks for the results of the liver biopsy done yesterday. I have missed the doctor each time I've gone home to deal with a sick kid and let our dogs out, so I'm getting pieces of information from rotating nurses and my loopy husband. I'm not budging today until I speak to one of his doctors.

They said they're discharging him today, but he can't stand without his heart racing - he's on a floor where they are monitoring his heart and they all come running every time he moves around because he starts dinging at the station. And his pain is not adequately managed. He can't tolerate the narcotic pain relievers so I'm not sure how they're going to tackle that. Especially if we hear the news they're alluding to and we start down that path.

Overall - completely spinning right now. And yeah - life changes in an instant.

I'm so sorry.
((hugs))
 
  • ronandannette

    I gave myself this tag and I "Like" myself too!
    Joined
    May 4, 2006
    Thank you ll so much for your support! It helps so much to see the messages. I'll respond and update tomorrow - exhausted now...
    :flower3:Grace and peace to you and your husband in the days ahead and here's hoping for a better outcome than you're expecting.
     

    rodeo65

    DIS Veteran
    Joined
    Feb 1, 2009
    So, getting up and going again after several hours in the ER last night myself. I started coughing yesterday and by 6pm it was so out of control that I was worrying about flu and whether I was safe to be near my husband. So off I went again (glad we live about eight minutes from the hospital) and sat there seven floors below him...waiting. Was there until midnight but they said it just presents as viral not bacterial - no fever, no other symptoms, just cough and runny nose. I can visit with a mask.

    They are keeping him at least through the weekend because they still haven't figured out what is going on with his heart. I met with the social worker yesterday while he was having his bone scan. She said that the team had met that morning to discuss patients and no one suggested he be discharged. The doctor was around also and said he wanted to review all scans, blood work and heart monitor data trying to find an answer. Anxiety, stress and worry isn't likely to still be causing such an issue three days later.

    It was helpful knowing what supports they will have in place. They can requisition equipment if we need for home care, support workers for relief and one of the bigger worries - financial guidance for any programs that might be available. DH is self employed and I help him with his business, but can't do the main function - it's specialised knowledge that he has. I will have to go back to work at some point but there are critical illness benefits for him and to a lesser degree - caregiver benefits for me.

    We are looking at where in the house we can put him, since they don't want him climbing stairs. When discussing everything, she was asking about his walking ability and I realised that he has stumbled on the stairs fairly frequently in recent weeks - probably half a dozen times in a month or so. At the time we'd joke about it but now, obviously it's a consideration. Everything has to be considered now based on what he can and can't do. I'm thinking about all his jobs around the house that will have to be shared between the kids and I. A lot to take in. The dogs are being weird - looking for him, sniffing around his chairs and office. Everything is scary. I do have a group of friends that will help as needed. Two of them came the night he was admitted because we had both cars at the hospital, so they took his home. My brother went through three separate battles with cancer a couple of years ago. He said to appoint one person to coordinate anyone wanting to help out because that can be overwhelming. Yes - pretty much everything is right now. I'm thankful that the kids are on March break this week. They took the week off training.

    Thank you all again for your prayers, thoughts and responses!
     
  • Snowysmom

    <font color=darkorchid>If they say "That's interes
    Joined
    May 11, 2003
    There has been some really great advice on this thread. Hoping for a good outcome. Let everyone help you so you can do what is most important for you, your DH, and family.
     
  • DisneyOma

    DIS Veteran
    Joined
    Jul 27, 2015
    I am so sorry! I was exactly where you are 6 years ago. My perfectly healthy DH fell while skiing and fractured a rib. It didn't heal and finally after pain kept increasing we started down the path you are now on. Our path led us to MD Anderson for successful treatment.

    Prayers that you get answers today, and for help with pain management while treatment is getting going. Bless you! it is a frightening overwhelming journey- sending hugs!
    I second the recommendation for MD Anderson, in Houston. They should be back up and running 100% by now from the hurricane damage they got. My older daughter works there, and it's pretty much the cutting edge for cancer treatment.
     

    Vicki926

    Mouseketeer
    Joined
    Feb 3, 2015
    So, getting up and going again after several hours in the ER last night myself. I started coughing yesterday and by 6pm it was so out of control that I was worrying about flu and whether I was safe to be near my husband. So off I went again (glad we live about eight minutes from the hospital) and sat there seven floors below him...waiting. Was there until midnight but they said it just presents as viral not bacterial - no fever, no other symptoms, just cough and runny nose. I can visit with a mask.

    They are keeping him at least through the weekend because they still haven't figured out what is going on with his heart. I met with the social worker yesterday while he was having his bone scan. She said that the team had met that morning to discuss patients and no one suggested he be discharged. The doctor was around also and said he wanted to review all scans, blood work and heart monitor data trying to find an answer. Anxiety, stress and worry isn't likely to still be causing such an issue three days later.

    It was helpful knowing what supports they will have in place. They can requisition equipment if we need for home care, support workers for relief and one of the bigger worries - financial guidance for any programs that might be available. DH is self employed and I help him with his business, but can't do the main function - it's specialised knowledge that he has. I will have to go back to work at some point but there are critical illness benefits for him and to a lesser degree - caregiver benefits for me.

    We are looking at where in the house we can put him, since they don't want him climbing stairs. When discussing everything, she was asking about his walking ability and I realised that he has stumbled on the stairs fairly frequently in recent weeks - probably half a dozen times in a month or so. At the time we'd joke about it but now, obviously it's a consideration. Everything has to be considered now based on what he can and can't do. I'm thinking about all his jobs around the house that will have to be shared between the kids and I. A lot to take in. The dogs are being weird - looking for him, sniffing around his chairs and office. Everything is scary. I do have a group of friends that will help as needed. Two of them came the night he was admitted because we had both cars at the hospital, so they took his home. My brother went through three separate battles with cancer a couple of years ago. He said to appoint one person to coordinate anyone wanting to help out because that can be overwhelming. Yes - pretty much everything is right now. I'm thankful that the kids are on March break this week. They took the week off training.

    Thank you all again for your prayers, thoughts and responses!
    I’m so sorry you are going through this. I can relate somewhat to everything changing and still having to deal with kids and house and finances and life and how I’m going to get a wheelchair around the house and a million other things..it’s so incredibly overwhelming. No one realizes how overwhelming until you’re thrown into a situation like that.

    My husband had a brain bleed last September. He was transferred from a local ER to a hospital 45-60 minutes away, which was great, because they were great, but the drive made it hard to get back and forth throughout the day. Was in ICU for 4 weeks(2 of them in a coma). I was gone from 9-9 every day. My kids still had school and football and cheer(they are a sophomore and a senior.) my daughter was applying to colleges. Had to fill out the fafsa. My husband is an accountant, I made him deal with all that. Exceot now I had to. I have a 13 year old dog that needed to be let out. He took care of all the bill paying..I totally forgot to pay our property taxes (thankfully remembered 15 days later)
    I had to take family leave from my job..
    I literally just left the back door open so the dog could come and go and people came in dropping off food those first few crazy days.

    The doctors would ask if I had any questions and I would say I have no idea what to even ask..how do you prepare for something like this? I was absolutely lost and overwhelmed. My brother came with me to all the super important stuff so someone clearheaded was there.

    My community set up a meal train..I had dinner delivered to a cooler on my porch every weekday from September to New Years. If anyone offers, accept. I’m not the type to feel comfortable with charity, but that was a lifesaver with 2 teenagers in the house.

    My husband’s neurosurgeon gave me the best advice-he told me to compartmentalize. Don’t look back, don’t look left, don’t look right, don’t look too far down the road. just focus on here and now or else it gets overwhelming. That’s what I’ve been doing and it has helped tremendously.

    They didn’t expect my husband to survive. A neurologist walked into his room that first day shrugged and said sorry, not good. He did survive in the hospital.
    Then he was moved to rehab, where he stayed 8 weeks..they didn’t expect him to even be able to stand. He didn’t talk and couldn’t move his right arm or right leg. I fought and fought and fought and fought for him..seemed like every single day in rehab. I believed.
    That guy who was in a coma, on a feeding tube, on a ventilator with a trach, is sitting in my living room watching TV and having a cup of tea and a cookie. That feeding tube is a distant memory. He walked up our front walk and into the house this afternoon. Wheelchair hasn’t been used except for long distances(mall) for a couple of weeks. I dont even keep it in the house anymore, stays in the car. He moved his right arm and hand this week. We went out to dinner last night. We are discussing going to the movies tomorrow. When I say discussing, I mean he’s talking to me, too.
    The only thing left of that trach and oxygen combo is a small scar. I go to work every day and he is fine at home. He’s hoping to eventually go back to work one day, himself

    Miracles happen.
    Keep the faith.
    Accept any help, even if it’s uncomfortable for you.
    You’re in my thoughts and I’m praying for a good outcome for your husband.
     
    Last edited:

    mom2rtk

    Invented the term "Characterpalooza"
    Joined
    Aug 23, 2008
    I’m so sorry you are going through this. I can relate somewhat to everything changing and still having to deal with kids and house and finances and life and how I’m going to get a wheelchair around the house and a million other things..it’s so incredibly overwhelming. No one realizes how overwhelming until you’re thrown into a situation like that.

    My husband had a brain bleed last September. He was transferred from a local ER to a hospital 45-60 minutes away, which was great, because they were great, but the drive made it hard to get back and forth throughout the day. Was in ICU for 4 weeks(2 of them in a coma). I was gone from 9-9 every day. My kids still had school and football and cheer(they are a sophomore and a senior.) my daughter was applying to colleges. Had to fill out the fafsa. My husband is an accountant, I made him deal with all that. Exceot now I had to. I have a 13 year old dog that needed to be let out. He took care of all the bill paying..I totally forgot to pay our property taxes (thankfully remembered 15 days later)
    I had to take family leave from my job..
    I literally just left the back door open so the dog could come and go and people came in dropping off food those first few crazy days.

    The doctors would ask if I had any questions and I would say I have no idea what to even ask..how do you prepare for something like this? I was absolutely lost and overwhelmed. My brother came with me to all the super important stuff so someone clearheaded was there.

    My community set up a meal train..I had dinner delivered to a cooler on my porch every weekday from September to New Years. If anyone offers, accept. I’m not the type to feel comfortable with charity, but that was a lifesaver with 2 teenagers in the house.

    My husband’s neurosurgeon gave me the best advice-he told me to compartmentalize. Don’t look back, don’t look left, don’t look right, don’t look too far down the road. just focus on here and now or else it gets overwhelming. That’s what I’ve been doing and it has helped tremendously.

    They didn’t expect my husband to survive. A neurologist walked into his room that first day shrugged and said sorry, not good. He did survive in the hospital.
    Then he was moved to rehab, where he stayed 8 weeks..they didn’t expect him to even be able to stand. He didn’t talk and couldn’t move his right arm or right leg. I fought and fought and fought and fought for him..seemed like every single day in rehab. I believed.
    That guy who was in a coma, on a feeding tube, on a ventilator with a trach, is sitting in my living room watching TV and having a cup of tea and a cookie. That feeding tube is a distant memory. He walked up our front walk and into the house this afternoon. Wheelchair hasn’t been used except for long distances(mall) for a couple of weeks. I don5 venue keep it in the house anymore, stays in the car. He moved his right arm and hand this week. We went out to dinner last night. We are discussing going to the movies tomorrow.
    The only thing left of that trach and oxygen combo is a small scar. I go to work every day and he is fine at home.

    Miracles happen.
    Keep the faith.
    Accept any help, even if it’s uncomfortable for you.
    You’re in my thoughts and I’m praying for a good outcome for your husband.
    What an inspiring story. Just what the OP needed to hear long about now I imagine. :hug:
     

    rodeo65

    DIS Veteran
    Joined
    Feb 1, 2009
    Yes, Vicki, that was a great story to read right now. Hearing there can be a turnaround even against the stiffest odds helps a lot, thank you!

    Bad day today - I'm really sick, fever hovering around 102 on ibuprofen and tylenol, so can't risk taking that in to DH. I'm trying to reach one of my girlfriends to at least get the kids over to visit him. I don't want to leave him all day without family coming by.

    He had a rough night - nausea returned after a day and a half of feeling better and heart rate is still up. His nurse suggested he start taking short walks to the station which is right across the hall from his room to start getting some strength back. He did that a couple of times yesterday, so maybe too much. Maybe should have just tried the once.

    We have a contractor who has done a lot of work with both my parents and with us as well offer to move our dining room furniture into storage for us if we end up bringing him home with a hospital bed, which I think is likely. He needs to ability to adjust his position and help himself up. He a big guy, (6' / 220) so it'll be hard for me to help move him around. I'm really upset to miss going in today!
     

    Eureka

    DIS Veteran
    Joined
    Jan 25, 2013
    Yes, Vicki, that was a great story to read right now. Hearing there can be a turnaround even against the stiffest odds helps a lot, thank you!

    Bad day today - I'm really sick, fever hovering around 102 on ibuprofen and tylenol, so can't risk taking that in to DH. I'm trying to reach one of my girlfriends to at least get the kids over to visit him. I don't want to leave him all day without family coming by.

    He had a rough night - nausea returned after a day and a half of feeling better and heart rate is still up. His nurse suggested he start taking short walks to the station which is right across the hall from his room to start getting some strength back. He did that a couple of times yesterday, so maybe too much. Maybe should have just tried the once.

    We have a contractor who has done a lot of work with both my parents and with us as well offer to move our dining room furniture into storage for us if we end up bringing him home with a hospital bed, which I think is likely. He needs to ability to adjust his position and help himself up. He a big guy, (6' / 220) so it'll be hard for me to help move him around. I'm really upset to miss going in today!
    I’m sorry you’re not feeling well and are upset about not going today. But you need to take care of you or else you can’t take care of DH. I’m sure he knows you’d be there if you didn’t have a fever. Try not to beat yourself up about it and feel better.
     

    AnnaFloridaLover

    DIS Veteran
    Joined
    Feb 3, 2015
    I'm really sorry that you and your family are going through this. Best thoughts coming your way for a speedy recovery for everyone!
     

    fhtpdw20

    DIS Veteran
    Joined
    Sep 26, 2006
    I've been down the cancer road with DH who passed after a 21 month battle. The best thing that I did at the start of the first diagnosis was to make a spreadsheet of Drs., addresses, phone numbers, dates of appointments, what was prescribed and by whom. Anytime I had a new Dr. to deal with I was able to pull out my sheet and fill out the paper work. It also helped when the bills came in to keep straight co-pays and insurance EOBs and when the bills were paid. We had 228 appointments/hospital stays over that 21 months. Prayers and good thoughts sent that the Drs. will be able to get your husband back on the road to recovery.
     

    Pea-n-Me

    DIS Veteran
    Joined
    Jul 18, 2004
    Does he have an arrythmia? Or is he just tachycardic? Treatment can be different for each.

    How fast is his heart rate when he stands? Is he symptomatic when his heart is going fast?

    Have they had a Cardiologist come and consult on his case? And recommend treatment? If not, they should.

    Saying prayers for your family.
     



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