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September 27, 2013 at 2:11 am #21600
Even though my wife Sandra has been so brave over these past few monthes, todays visit with her oncologist was very hard on her. I’m so proud of the way she has been dealing with her illness. July 17th was a particually hard day. I had the rescue take her into the hospital early that morning due to her “altered mental status” overnight. That day we found out that her disease had gone to her brain. We were so close! on Friday July 19th she was suppose to start her PD-1 trial at Beth Isreal Deaconess Hospital on Boston. It was so hard cancelling our train tickets to Boston. She had numerous brain mets, the doctor stopped counting at half-dozen. Her MRI was clear just three monthes earlier. Thats when a CT & PET scans indicated mets in her lung. So they put her on Dexamethazone (steroid) and Keppra (anti-seizure drug) and she did 14 full brain radiation treatments along with the chemo drug Temodar. She lost all her hair, and again I was so proud of the way she handled the hairloss. A follow-up MRI on Sept 3rd indicated that the brain mets were still there but had shrunk considerably. So she then starts her Ippi treatment along with GM-CSF, four days later she has a generalized clonic-tonic seizure that scares the crap out of me and I have the rescue take her back into the hospital. They do a CT scan, but it doesn’t reveal what caused her seizure. They double her Keppra and send us home. Three days later she starts having “Altered mental status” episode again, no trip to the hospital this time but they bring it under control by increasing her dexamethazone to 4 MG twice a day. She starts to taper her Dex down to 2 MG twice a day but that only lasts two days and again she has a similiar episode. That was today and we were scheduled to see the doctor anyways. Due to her two “altered mental status” issues in less than a week he believes her brain mets are progressing again. He also said it could be her Keppra doing it too. She is scheduled to do her 2nd Ippi treatment next week along with restarting her GM-CSF injections that were stopped after her seizure. He is also added Temodar in an attempt to slow the brain mets progression to give Ippi time to work. What was especially tough on Sandra today is he mentioned “hospice” for the first time since she started seeing him over two years ago. Even though he also says that she isn’t at the point in her battle it seemed to hit her hard. All these “episodes” seem to take a little more fight out of Sandra each time. She doesn’t rebound back as much. So here we are, still praying for a miracle. Sandra and I celebrate our 20th wedding anniversary on October 16th. We were suppose to go away for vacation this October but I cancelled all our reservations today. She keeps asking “why me?” and keep telling her “Only one person knows the answer to that question.”. It’s just Sandra & I, we don’t have any kids. We have a niece & nephew on her side and also grand-niece & grand-nephew also from her side. I guess that’s as close to kids that we ever needed. Sandra has been on short-term disability since August and hasn’t been to work since July 16th. She’ll start long-term disabilty in mid October. In case I haven’t mentioned it. I am so proud of Sandra. I do appreciate the time you took reading my post.
Caregiver for my best friend SandraSeptember 27, 2013 at 12:34 pm #62603
So sorry to read your story and can only hope things normalize a bit for both of you. We have some great people here that have travelled your journey with some great advice. Family support is wonderful and hospice isn’t just for dying. Hospice can provide comfort and being pain free is their priority. It is not always the end of the world but actually a way to get more support. This disease is terrible and only recently have we found some answers. You aren’t alone and please keep in touch with us.October 6, 2013 at 10:32 pm #62604CeceliaParticipant
Doug, my thoughts are with you as you face the complications of brain mets. Don’t give up hope. We don’t really know yet about ipi and brain mets, and keppra can do wonders for the seizures. I will be praying that you catch a break.
Catherine, sorry to hear that you are dealing with health problems with a grandchild. Somehow, no matter how hard everything else is, grandchildren make us even more vulnerable. I hope it resolves positively for you and yours as well.October 6, 2013 at 11:42 pm #62605
Thank you Cecilia, my grandson has a rare autoimmune disease that we’ve been trying to figure out for a few weeks. He’s just 16 months old, so the tests etc are very tough to see him endure. But he’s very tough and I think we’ll come out on the right side of this with remission. It did make me see even more how difficult it is to navigate these unknown waters when someone you love is dealing with it so close to you. It is very hard to keep your perspective. Somehow we all persevere and make it though. I appreciate your warm thoughts.October 9, 2013 at 5:54 pm #62606 I appreciate all the kind words. Sandra has gotten so weak in the past couple days, especially in her legs. She’s to the point of always needing assistance just to walk. She’s also declined mentally and motor skills wise. I have to dress her etc. We came back from the doctors a short while ago from an unscheduled visit. They’re not sure if these symptoms are from her treatments or from the progression of her disease. I truly hope it is from her treatmenst and that they’re doing some good. She also had a brief localized seizure last night. I did have the rescue come and checked her out but no ride to the hospital. It was nothing like the one she had three weeks ago and she seemed to recover quite quickly. She and I didn’t get much sleep last night due to her continual coughing and some of her “altered mental episodes” she had. Hence the unscheduled trip to her doctor today. We submitted paperwork for long-term disibility and the attorneys for “The Hartford” have started the paperwork for her social security disability. We’re currently waiting to talk to the hospice people.October 10, 2013 at 11:44 am #62607Sandalwood36Participant I feel your pain Doug and really Wish there was something that I could do to help. Do take good care of yourself during this terrible time. Spend as much time as possible with your wife and just try to enjoy each others company. You are both in my prayers.October 10, 2013 at 8:37 pm #62608 Doug,
Do you have anyone who can come in and help until hospice is available? You need to take care of yourself and avoid the sleep deprivation you are experiencing. Sandra may need some meds to calm her anxiety so she can rest too. I would definitely try to be a squeaky wheel and get some help for her so you can rest easy. You are certainly in our thoughts.November 3, 2013 at 1:04 am #62609
Sandra continues to carry-on in her continuing battle againt her disease. We were able to get away a couple days over our 20th annivesary. Sandra did her third Ipi infusion on 10/24, her last infusion will be 11/14. Until now her side effects have been minimal, primarily fatigue. Also on the 24th my mother was transferred from Maine Medical Center to The Gosnell Hospice House in Scarborough, ME. My dad, brother and I pretty much camped out there for five days. Due to Sandras condition I couldn’t stay overnight but my dad and brother stayed with her for four nights. Except for the last night it was just my younger brother and he was with her when she passed away in her sleep at approx 2:15am of congestive heart failure at the age of 69. She was due to turn 70 on 11/16. I can’t say nothing but good things about the staff at Gosnell, they kept mom peaceful and pain free until her passing. Sandra is also doing five days of Temodar again along with the Leukine (GM-CSF) shots I give her at night. We have tried unsuccessfully to taper Sandras Dexamethosone. She was down to 6MG as recent as Thursday (10/31) but had a major relapse that night, she’s back up to 8MG and stable but she’s not as good as she was the week earlier. I have a bad feeling that her current treatments are not working. I believe her next scan is scheduled the week after Thanksgiving, so I guess we’ll know for sure then. I have to say the 2013 has been the year from hell.November 3, 2013 at 2:39 pm #62610AnonymousGuest Doug:
I’m so, so sorry for the loss of your mother. To have that lumped on top of the struggles and heart ache you and Sandra are going through is more than many could bear. You are a fantastic caregiver and protector. Saying it’s hard is a vast understatement. It cuts to your core, your very soul at times. And you have to ask why. Why this suffering?
But keep fighting, keep going. Sandra is in the very best of hands, your hands. NOBODY can do a better job than you.
You’re both in my deepest prayers.
JeffNovember 8, 2013 at 7:42 pm #62611
I’m scheduled to go back to work tomorrow after some family-sick time and bereavement. Against my better judgement, I’m leaving Sandra home alone. She doesn’t want to go to her dads while I’m at work. At what point is she unsafe to be home alone. She’s mentally slow and sometimes cannot say what she’s trying to say, she typically knows what day of the week it is. I have to assist her slightly getting dressed. She’s also somewhat unsteady on her feet but I don’t believe she’s a fall hazard yet. When we spoke with her doctor about it, he said we would have to use our discretion. Of course that was a month ago and she was better back then. I’m looking for some guidance from you folks. I may contact my health insurance provider and inquire from them too.November 17, 2013 at 12:25 am #62612 I was only at work for 2.5 hours when my call to the house went unanswered, so I went home to find Sandra having another “altered mental status” episode. The on-call Oncolgist requested that she be taken to the hospital (Maine Medical Center). A CT scan of her head indicated that the lesions in her brain had grown in size and that she has new lesions since the last scan. She was in the hospital for six days (came home yesterday) while they played with different does of the dexamethizone to get the swelling under control. She’s currently on 32 mg of steroid per day and it seems to be working to keep her more stable mentally.November 29, 2013 at 1:18 am #62613 Sandra has gotten so weak from the dexamethazone, her mental capacity is also slowly declining. We have a physical therapist and visiting nurse coming to the house once a week. She has no strength in her legs and her arms are not much better, I have to lift her off the couch, the toilet and any chair she sits in. I’ve already raise the couch and the toilet. My supervisor gave me two more weeks off but I’m using up all my sick time. I’m going to check on home health care for her, I’m not sure if my health insurance will cover it any of it. I also believe Sandra may be starting to have some depression issues. We’d seen her doctor last Friday, he kept her steroid dose where it is for now. After we met with him she did her last cycle of Ipi (for what its worth). She also started another round of Leukine (GM-CSF) shots and she started Temodar capsules today. She is due to have another CT scan next week. If it shows more progression there’s not much more the doctor says he can do. 😥November 29, 2013 at 9:47 pm #62614abdormaParticipant Hi Doug,
I have started three times to write to you and each time quit as I felt my post was inadequate. You have my prayers for both you and Sandra as you go down this road. I know you wrote this on Thanksgiving which must have been a very difficult day for you as you just lost your mother and are watching your wife get weaker and weaker.
I imagine that Sandra’s scan will help you decide what your next course of action will be. In the meanwhile, to help you with getting assistance, is there a social worker associated with the hospital or clinic where your wife is being treated? If there is, she or he should be able to provide you with information about home health care available in your area; how to rent medical equipment like commodes, a hospital bed, assisting devices that would help Sandra maintain the best quality of life. Sometimes the American Cancer Society will loan this equipment for free and a social worker will be able to get you information quickly about how to go about getting this stuff. Sometimes they help figure out what your insurance coverage will take care of.
I hesitate to write this next thing as it is a difficult step to acknowledge. But it might help you. I know that you can ask for a Hospice nurse to come to your home and provide you information with what services they have available even when your wife is still receiving treatment. It puts your family on the “horizon” for them so that if you get to the point where you and Sandra decide to discontinue treatment, they can quickly come in and begin to see Sandra. Most insurance companies do cover Hospice services and in our area, all of the medical equipment just arrived as part of the Hospice service.
My husband recently died from melanoma and I was able to take care of him in our home but also needed help in the end of his struggle. Regardless of what happens and I certainly pray that IPI proves to be effective for Sandra, you will be in my thoughts and prayers. It is hard work to take care of someone both physically and emotionally. I wish you the best.
annNovember 30, 2013 at 4:04 am #62615AnonymousGuest
Ann is so right, our words are inadequate. But we and others here know how this feels, you are not alone in this my friend. Your pain at watching your loved one in pain and discomfort and slipping a bit each day is withering I’m sure, the despair a huge weight on your heart. It just sucks.
You are a wonderful care giver! She can do not better that you.
But please consider hospice as Ann suggests. That’s always a highly charged and emotional decision but it’s not giving up the fight and hope by any means, not one bit. It is however, a redistribution of your work load, sharing it with others who are highly skilled and know exactly what’s needed to insure her comfort. This will not only give you some physical relief but also much needed emotional relief which both of you need as you continue to fight.
God bless you Doug and try to look out for you too.
JeffDecember 7, 2013 at 5:52 am #62616
I’m writing to you all from the public computer at the Gosnell Memorial Hospice House in Scarborough, Maine. Sandra’s doctor had her admitted to Maine Medical Center (Gibson Pavilion) this past Tuesday at my request. I didn’t expect that she wouldn’t be going home from the hospital when I requested her to be admitted. A CT scan of her brain showed continued progression and they told me that she only has a couple weeks at best. I didn’t have the heart to tell her this. Even though she isn’t very coherant some times, I believe she knows what’s going on. On top of that, an ultrasound of her right leg showed a clot that they are unable to treat due to the risk of the lesions in her brain bleeding. They were going to send her home for hospice care there but the clot in her leg made it a whole other ballgame. Intialliy Hospice of Southern Maine told Maine Medical Center that she did not meet their criteria for care at Gosnell. I’m not actually sure what MMC did but they were able to get her here. I would rather be at the Gibson Pavilion at MMC, coming here seems to mean that the battle is over. I know they couldn’t do anymore for her at the hospital than here, I guess it’s more of a psychological thing to me. 😥
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