• danellsar's Avatar

    danellsar posted an update

    Husband is back in ER again. Internal bleeding. Looking like he will be admitted to ICU shortly.

    5 Comments
  • danellsar's Avatar

    danellsar posted an update

    The cancer is winning this battle. Liver tumors have spread. Esophageal tumor is growing. Blood clots everywhere. The decision has been made to stop chemo and all other forms of treatment. We're meeting with palliative care tomorrow to bring hospice into the picture.

    4 Comments
    • RuthAnne's Avatar
      RuthAnne

      So very, very sorry. Be strong.

      over 7 years ago
    • Marisa's Avatar
      Marisa

      I'm so sorry to hear the news. I hope that hospice care will be as wonderful for your husband as it has been to the man I care for. I addition to hospice, we have a private nurse come in twice a day for two hours each visit. Art resisted the whole idea of in-home hospice care because it meant "the end is near" to him. Our whole concept of hospice has changed - we look forward to their visit every day now. Sometimes I don't think I could make it through the day without knowing they are coming. I hope that hospice offers you and your husband good care and peace of mind.

      over 7 years ago
    • danellsar's Avatar
      danellsar

      marisa- can you tell me about how much the private nurse costs? We opted for a skilled nursing facility over hospice because he has such high medical needs, and I felt very overwhelmed by the level of care he'd need. If I had a nurse coming in, it might be do-able to have him at home. You can email me privately if you want: danellsar @ yahoo.com.

      over 7 years ago
  • danellsar's Avatar

    danellsar posted an update

    RIP Sally Ride. You ride with the stars. You inspired a generation of girls and young women to take on science and take flight! Another victim of cancer taken too soon.

  • danellsar's Avatar

    danellsar posted an update

    Friends: With my husband's death, I will not be as active on this site as previous. I do not want to be a "downer" as some have suggested, and I don't want anyone to give up hope for a cure because of my family's situation. We had a beautiful funeral service, almost 200 people came to pay tribute to a quiet man who fought with every ounce of his being to beat this awful disease.

    I will be here if any caregivers need help, if there are those who need advice on surviving the modern medical establishment intact.

    I have prayed daily for my husband to win this fight, to find a cure for gastric/esophageal cancer for almost 2 years now. I will not stop my prayers, but now my heart must look towards rebuilding my family and helping my 2 young children heal from their father's illness and death. I don't quite know how to live my life without him, or what to do with my time now that there aren't multiple doctor appointments and treatments every week. Time will heal our hearts.

    Daniel Paul Perling, August 1, 1965 to May 27, 2012. Died of stage 4 multiple metastatic adenocarcinoma of the gastro esophageal junction, with metastases to the liver and blood system.

    3 Comments
    • DaveWaz's Avatar
      DaveWaz

      You take all the time you need to take care of yourself and your family. We are here for you and will always be here for you. You have never been a down, always a source of inspiration. Our hearts are with you.

      over 7 years ago
    • Stevedarke's Avatar
      Stevedarke

      Ellen

      Anyone who is unwilling or unable to face the reality of this illness should perhaps look else ware if such a place exists. Below is something I wrote some time ago and could not be more befitting to the wonderful caring person you are.

      Take care of yourself and your loved ones and together you will pull through this sad time.

      ~To the caring one~

      As I stumble towards the abyss you are my guiding hand, the rope that holds me fast should I fall,

      In the night when I awake from restless sleep you are my lighthouse to save me from the black and jagged rocks,

      You care not for duty but for love and have made this your career; when people ask of me, you hide behind a smile to reassure and mask your sorrowed brow,

      One day when I am gone, and your loves caring labor is redundant, who will grieve for you, who will fill your lonely days; for I could not bear the loss of you and would gladly die a thousand times over rather than watch this thing happen to you.

      Steve.

      over 7 years ago
    • agrogan's Avatar
      agrogan

      I am so sorry for your loss. He will always be with you and your kids. You have to understand that the love and service you provided to your dear husband will be your consolation. Love endures everything and with God's love, we will keep on going, even if the road is dificult.

      over 7 years ago
  • danellsar's Avatar

    danellsar posted an update

    We are nearing the end of the journey. Pray for a peaceful passing and no more pain.

    2 Comments
    • ogtxaggiemom's Avatar
      ogtxaggiemom

      You are in my prayers

      over 7 years ago
    • DaveWaz's Avatar
      DaveWaz

      We are sending you and your family hugs and prayers and lots of love.

      over 7 years ago
  • danellsar's Avatar

    danellsar posted an update

    Husband has been in hospital and now rehab facility for the last 7 weeks. He's stir crazy to get home, but still very weak and having ongoing balance issues. Stupid cancer!!!!!!!!!!!
    (He's 46).

    1 Comment
    • DaveWaz's Avatar
      DaveWaz

      UGH. Sending you a big hug. That really stinks.

      over 7 years ago
  • danellsar's Avatar

    danellsar posted an update

    He's finally out of the hospital. They sent him to a skilled nursing rehab to try and regain some strength. No chemo for now.

    3 Comments
    • StunnedMike's Avatar
      StunnedMike

      He is having a rough go at it. I hope things start impoving. My prayers are with you and your husband.

      over 7 years ago
    • DaveWaz's Avatar
      DaveWaz

      One step at a time. I hope you are taking good care of yourself, too.

      over 7 years ago
    • CarolLHRN's Avatar
      CarolLHRN

      Rehab can be a good thing and a heck of a lot better than the hospital. Hang in there!

      over 7 years ago
  • danellsar's Avatar

    danellsar posted an update

    What a whirlwind. Husband was inpatient all last week for 6 days due to pain and infection. Sent home on Sunday, and went back to ER on Tuesday for more pain and legs swelling. Spent 30 hours in the ER waiting for a bed to open up. Diagnosis is blood clots in his legs. Currently is getting IV heparin and on telemetry. The pain from the clots is so bad that he cannot walk.

    I think maybe I'd like a vacation now. Pretty please?

    3 Comments
    • CarolLHRN's Avatar
      CarolLHRN

      You totally deserve a vacation! Treat yourself to a pedicure. It's a mini vacation at least!

      I am glad they figured out what the issue is. He will probably end up going home on Lovenox injections once or twice a day that he can give himself. If the copayment is high for your insurance, there is a program Lovenox has to help patients with the copayment.

      over 7 years ago
    • danellsar's Avatar
      danellsar

      Thanks, Carol. As long as he is on heparin, he will have to be on monitoring. He has had poor reactions to the meds, so they are watching him carefully. The good news is a private room.

      over 7 years ago
    • iwillsurvive's Avatar
      iwillsurvive

      God Bless You and yours. Ive lost both my mom and dad to cancer and found out today I have lymphoma. We are going to Hawaii at summers end and you should plan on a vacation too - even a day road trip is something to look forward to and help keep your mind off of your current situation.
      Hang in there my friend - I will be following you!

      over 7 years ago
  • danellsar's Avatar

    danellsar posted an update

    Well, he was home for 36 hours, and is now back in the hospital.
    :-(
    Not enjoying my spring break here.

    1 Comment
    • DaveWaz's Avatar
      DaveWaz

      Oh no. Are you getting the support you need? I hope you are also taking good care of yourself.

      over 7 years ago
  • danellsar's Avatar

    danellsar posted an update

    Still in hospital. Day 5. High white count and pain. Why won't the doctors LISTEN to family members? I asked a question 4 days ago about this being a post transfusion reaction, and they ignored me. Now it looks like I might just be RIGHT!!!!!!!!!!!! Argh!

    2 Comments
    • DaveWaz's Avatar
      DaveWaz

      Is there any update? Your family has been in our thoughts.

      over 7 years ago
    • danellsar's Avatar
      danellsar

      Thanks Dave. He's still there. Still on antibiotics that are not working. Not sure when he'll be able to come home.

      over 7 years ago
  • danellsar's Avatar

    danellsar posted an update

    Husband admitted to hospital last night for pain and infection.

    3 Comments
    • CarolLHRN's Avatar
      CarolLHRN

      I hope he is home real soon!

      over 7 years ago
    • DaveWaz's Avatar
      DaveWaz

      Sending you all good vibes and positive thoughts. Please know that we are "with" you and support your family.

      over 7 years ago
    • StunnedMike's Avatar
      StunnedMike

      My prayers are with you and your husband.

      over 7 years ago
  • danellsar's Avatar

    danellsar posted an update

    Husband gets another transfusion today, and another pass on chemo. This is 2 treatments missed because of his overall health being poor. Hope they get back to it soon, as it was helping a lot. He'll get 3 units today, just shy of having to be admitted overnight. At least he is slowly recovering from the respiratory infection. Never dull around here.

    2 Comments
  • danellsar's Avatar

    danellsar posted an update

    Hubby has a respiratory infection so he gets a week off chemo and antibiotics. Hope it helps him feel better!

    1 Comment
    • sarahgrossman's Avatar
      sarahgrossman

      Oh no :( that is no fun to deal with! I hope he gets better fast! Deep breathing and coughing help a lot!!

      over 7 years ago
  • danellsar's Avatar

    danellsar posted an update

    Husband has had some kind of "bug" the last week. He had a temperature last week at chemo, and has had it on/off all week. Plus coughing and congestions. It's tough because we have kids, and so he's exposed often to their sickies.

    Wish he'd get better soon.

    2 Comments
    • DaveWaz's Avatar
      DaveWaz

      We're keeping him in our thoughts, hope he's doing better. And hope YOU are doing ok, too.

      almost 8 years ago
    • RebeccaW's Avatar
      RebeccaW

      My husband has been fighting a cold that has been going around. Its hard when us, his care providers, get sick. But we have been able to stave off anything serious by taking "Olive Leaf Extract" as it kills things off quickly and boosts your immune fighting ability. It's been really helpful. That and my husbands nutrition changes have made a huge difference.

      over 7 years ago
  • danellsar's Avatar

    danellsar posted an update

    Good CT. Lymph nodes no longer enlarged. No new tumors. Tumors in esophagus, stomach, liver are all same or smaller. Yay!

    6 Comments
    • StunnedMike's Avatar
      StunnedMike

      Awesome!

      almost 8 years ago
    • CarolLHRN's Avatar
      CarolLHRN

      That is such great news! Celebrate and give yourself a treat!

      almost 8 years ago
    • susie81610's Avatar
      susie81610

      Great thats what we like to hear!!!! Keep pushing on!!!!

      almost 8 years ago
  • danellsar's Avatar

    danellsar posted an update

    CT scan tomorrow. Hubby hasn't had any scans since Thanksgiving, so we're really praying for good news.

    1 Comment
    • DaveWaz's Avatar
      DaveWaz

      You're in our thoughts, please keep us posted. You're in our prayers.

      almost 8 years ago
  • danellsar's Avatar

    danellsar posted an update

    Well, today was the hubby's last day of work. He's now on disability, and I'm on a countdown until we lose our family medical health benefits. He'll still be covered, but the kids and I will not as of June. COBRA is out of this world expensive, and so is private insurance. Getting insurance through my work would also be extremely expensive. We don't qualify for most public health plans due to being teachers.

    Any great ideas?

  • danellsar's Avatar

    danellsar posted an update

    Husband's pain level has increased greatly in the last few days. Not sure why, but he says it's triple what it was.

    I really hate cancer.

    6 Comments
    • danellsar's Avatar
      danellsar

      Doctor is sending him to a pain clinic to discuss ways to manage pain besides morphine. Pain still really bad.

      almost 8 years ago
    • Stevedarke's Avatar
      Stevedarke

      Ellen

      That is all well and good about the pain clinic, however that is not going to sort the problem he has right now, insist his doctor gives him something strong for the pain until then. I sometimes think doctors are on another planet. I am sure they would not suffer the pain themselves!

      Steve

      almost 8 years ago
    • danellsar's Avatar
      danellsar

      Steve- He's already taking morphine orally, as high a dose as they are able to give him. It's not helping. We're still waiting on the pain clinic. His pain level is still high enough that he's also taking break through meds, but then all of that gives him indigestion and other GI problems. Never ending. I hate seeing him in so much pain all the time!

      almost 8 years ago
  • danellsar's Avatar

    danellsar posted an update

    Taxotere=bad. 5 hours in ER today due allergic reaction and BAD side effects.

  • danellsar's Avatar

    danellsar posted an update

    Woo hoo!! Good news (I hope) for a change! After asking for the last 6 months about HER2, we finally got the test result as HER2 positive. So they will be starting my husband on herceptin and taxotere for this cycle (hopefully this week). From what I know, it shows a lot of promise with esophageal cancer!