u/myaletheia

Clarification... I'm not angry at my husband at all. I'm angry at the situation of his care.

First of all I want to post a trigger warning for all of you that are valiantly fighting this beast of Sarcoma. Please don't read on... keep fighting. 🙏💕

My husband of almost 38 years passed away last week after a brief battle of Sarcoma NOS. I feel a bit angry that he was not referred to palliative care sooner. He suffered so much pain for his last month. I keep asking for more pain meds or different pain meds. We finally got palliative care appointment a week ago Monday and the nurse was like omg... I'm so sorry you had to come in for this appointment. If I'd know he was so bad I would have just done the referral to hospice. She ordered fentanyl patches and we got them on Tuesday. They take 12 to 24 hours to kick in. Wednesday we had hospice intake and the nurse thought he had a couple of weeks left. The hospice doctor also ordered liquid morphine and ativan. I gave him 4 doses and he passed the next day. A week ago yesterday. I know anger is a part of grief. I can't help but wonder if he was referred to palliative care or hospice sooner his last week would have been more comfortable for him. The last 2 weeks were brutal until the fentanyl patch kicked in. I'm thinking of emailing the cancer center to say if you ever have a patient in similar situation as my husband. Refer them to palliative care right away. I don't know if that will help but I don't want someone to go through what we went through. I feel like he slipped the the cracks even though he was being seen through top Sarcoma center in our area.

Praying for those that are in a similar situation as us. 🙏💕

Hi I'm new to this community. My husband passed away last Thursday (6/25) from an aggressive sarcoma that was diagnosed in April and had spread throughout the bones in his body and in his brain. The past two weeks of his life were brutal for him and he was in so much pain. I was his primary caregiver. We have been married for almost 38 years. He was my best friend. I'm actually doing okay. I mostly feel so much relief that he is no longer suffering. I have had a couple of moments of sob crying but mostly teary eyed moments occasionally in my day. I went to work today and people were like why are you working? I felt like there isn't any funeral planning today and work is a nice distraction. Even though I miss my husband immensely there are still things that need to be done in the day to day life. I feel like maybe I'm not grieving right. I can't articulate my emotions but was anyone else okay and functional after the love of their life passed?

This is a long and frustrating story. Thank you in advance if you read this all the way through. I just needed to get all of this out to a community that may understand. I hope this isn't triggering to anyone. I don't mean it to be.

On February 3rd, my husband (age 64) tripped over a dog bed. He fell on my desk chair and tweaked his shoulder. A week later, it still hurt and he went to the orthopedic surgeon to go get checked out. They were pretty sure he had a torn rotator cuff but he had a spot on his bone in his arm and has a prior history of testicular cancer (43 years ago) so they wanted him to get an MRI on his shoulder. The MRI first available was 6 weeks out. Mid-February he was opening a jar and felt excruciating pain in his right arm and heard a crunchy sound. He went back to the orthopedic surgeon's office. They did x-ray again and said there was no change but but he could not use his right arm any longer. It was a very long and painful 6 weeks for him. The orthopedic surgeon had him go to his primary care to manage the pain. What she prescribed barely touched his pain.

The MRI results showed that he had a right humerus displaced pathologic fracture and large lytic destructive possible malignant neoplasm. I read the results and immediately messaged the orthopedic surgeon to find out if we needed to find an oncologist or were they going to refer to oncologist or what was the plan? They said that they were going to refer him to University of Washington so he could see an orthopedic oncologist up there. This was on a Thursday. On Monday, I hadn't heard anything so I called University of Washington and they said I had to wait for the referral to come through. Another week goes by. I call back and I explained the situation and the person I talked to was very kind and told me that they didn't have a referral or have orthopedic oncology anymore. Fred Hutch Cancer Center took that over and maybe the referral went there instead. He gave me the number for Fred Hutch. I called them. They also didn't have a referral so they gave me the correct fax number for the referral. I messaged back the orthopedic surgeon's office and also called them to tell them they need to send the referral that day. A few hours later I got a call back from a nurse at Fred Hutch and we got an appointment set up for April 9th. In the meantime, I forwarded the MRI to his PCP. She went ahead and ordered a PET scan. The pet scan results were available the same day that we saw the Orthopedic Oncology PA at Fred Hutch. The scan showed he had several lesions in his bones throughout his pelvis, his spine, his thigh and also nodules in his abdomen and in his chest wall. The main plan at the appointment was to get his arm fractured stabilized with a rod and to get a bone biopsy. At first they weren't sure it was going to be a sarcoma and maybe it might be a metastasis from elsewhere. The biopsy results took two weeks to come in and he biopsy to come back. The diagnosis was MALIGNANT SARCOMATOID NEOPLASM. But the findings may represent a primary bone sarcoma (at least intermediate grade, undifferentiated on this material) if this lesion is clinically and radiologically determined as primary, however, a metastasis cannot be excluded due to history of testicular cancer. So they sent off for more test and another biopsy from a different location. In the meantime, he had his surgery on May 8 to fix his arm. That did help with his pain. We finally met with the medical oncologist on May 11 but we don't really have a game plan yet because they're still waiting on the pathology. She said the slides show it looks like a Sarcoma but it's not acting like a Sarcoma. Whatever it is, it is Stage 4. We also found out at that appointment if he does have any chemotherapy the tegretol medicine for his seizure disorder that he has been on for 30 years will counteract with chemotherapy and he needs to be switched to another seizure medicine. So we had another appointment with his PCP since he doesn't have a neurologist and she switch to Keppra and started the transition off of tegretol which it's about a 4 to 5 week process. We have two more weeks to go of that. He's been approved to start palliative radiation for his arm. That treatment will finally start this week. They have ordered some more MRIs but he is very challenging to get MRIs because he's in a lot of pain in his back and it's hard for him because still for a long period of time. We tried to have 3 at one time a few weeks ago and he couldn't get clear scan for it even with some Ativan. We finally got one done yesterday but they are recommending for the others that he get them with anesthesia. Unfortunately places are booked out for this until August.

We did get pathology results with diagnosis of Spindle Cell Sarcoma. We do have an appointment again with the medical oncologist tomorrow. So hopefully we will have a better plan of treatment after that appointment.

I am very worried that his body is shutting down. It's been over a month since he's eaten any food. (Waiting on appointment with nutrition consultant). He has no appetite and no desire to eat. He's lost over 40 pounds since March. Ensure Plus and Gatorade has been keeping and going. He sleeps about 20 hours a day. He's really deteriorated over the past couple of months. He no longer has stamina to walk, other than from the bed to bathroom and he's very wobbly. He's had a few falls. If we go anywhere he needs a wheelchair. Walking any distance is a challenge for him because his legs give out if he's up too long. He can't use a walker because of his arm. He's also had significant cognitive decline over the past couple of weeks. It's been such a fast decline.

They also want him to have colonoscopy this week to rule out colon cancer as well because the pet scan showed colon inflammation to but the CT scan showed diverticulitis which he has dealt with over the years. I'm scared he won't be able to do the prep. And I worry about dehydration.

I know it's important to stay positive with medical situations like this but it's hard. I do stay positive with him but I'm scared. It just seems there have been delays after delays. And time is of the essence so to speak with a stage 4 cancer diagnosis like this. It's been so frustrating and I feel helpless with the delays in treatment. Sigh.