A place where family members, caregivers, and loved ones of people having a Stage IV (metastatic) diagnosis can share, discuss, and support one another through the tough times unique to this diagnosis.
Posted on: May 1, 2020 12:29PM - edited May 1, 2020 01:15PM by ctmbsikia
Hi everyone. A fellow poster thought it might be a good idea to start a topic for others that may be or have been in my shoes. As you can see from my signature I was diagnosed with bc in late 2017. I was 56 at the time. I had just signed on with a new primary doctor in Oct. 2017. I was previously that person who only sought out medical assistance after I was unable to fix myself at home. Age caught up to me. Even after my sister was diagnosed w/bc in 2014, it still took me this long to get a check up. I was given a bunch of orders (labs, mammo, colonoscopy, low dose CT lung scan, Dexa). Nov. of 2017 is when I felt my own lump and having these orders in hand I scheduled the tests and I have been failing most of them ever since! Blood was high cholesterol, was put on meds for that. Low Vitamin D, was put on the D2 weekly 50,000 units for that. Osteoporosis in hip, osteopenia in spine. I then went into the bc world completely oblivious, other than what I knew of my sisters' situation. At that time, I was caregiver for our mother and I was mostly just covering for her during her treatments. We didn't have many deep dive conversations about her diagnosis. Found you guys and now I feel confident in my knowledge of what I am dealing with. Very grateful for all of you and this organization.
I have been married to my husband for 35 years. Wasn't always easy. We have 2 children, a daughter and a son. We lived our lives like we were invincible. We were both smokers and drinkers. We worked hard, partied hard, and did our very best to raise respectable children and we were highly functional among being dysfunctional in many ways. Nothing is ever as you would like it to be, so you compromise, recognize deficiencies in others, adjust, and carry on. When we were about 10 years in we did attend some marriage counseling and looking back I do believe it helped us survive. My husband and I come from very different back rounds. His childhood was wrought with an alcoholic father who couldn't keep a job and kept moving them around. His mother must not have been on birth control, she had 8 children over the span of 10 years! One died at birth. Husband has 3 sisters, and 3 brothers. As his parents marriage was heading toward divorce, he quit high school and went out on his own at the age of 15. Far cry from how I was raised in a loving family, devout Catholics, attending 12 yrs. of Catholic school.
As his 60th birthday approached he had been very busy working, drinking his beer every night, and of course, smoking his cigarettes. He suffered a fall while working and this event marks the beginning of his cancer journey. He goes to the same primary as I, a family practice, male doc the MD and his wife a NP. They are 2 of the most wonderful people I have ever met. Doc ordered a CT of his head which came back fine, but the low dose CT of his lungs came back with possible pneumonia. He had a short course of anti biotics and seemed to be getting better but never quite recovered fully. A follow up scan came back worse than the 1st one so we were referred to a pulmonologist. I called for an appt. that same day and he was booked over a month away. I then searched the system, I will mention them here as they come highly regarded (Penn Medicine), to find another pulm. who maybe able to see him sooner, even if that meant traveling a little distance. I was able to locate another Doc and made an appt. for 2 weeks sooner than the local Doc. Husband was on a decline during this time, and the day before his appt. we ended up in the ER with abdominal pain. His fall occurred on Jul 1-2019, with the few primary visits and 2 scans in July and Sept we felt something was terribly wrong. I also joined a lung cancer forum after diagnosis seeking support and all the information I could manage, so here is his signature from there that I have journaled as many of us do here:
Diagnosed 10.30.19 SCLC (small cell lung cancer)- extensive stage, mets to liver, adrenal glands, pancreas, kidney, couple of bones, lymph nodes (lungs, abdomen). No metastatic disease found in his brain.
11.18.19 Tecentrig/Carboplatin/Etoposide started every 3 weeks. When 4 cycles complete then scans.
1.30.20 CT scan results: No neoplasm present in right lower lung. No pleural effusion. Improvement in metastatic disease. Continuing with treatment. Repeat scans in a couple of months. Received total of 7 treatments.
4.6.20 CT scan results: Progression of disease. Increase in size of the right hilar mass. Increased mediastinal and bilateral supraclavicular adenopathy. Increase in size and number of hepatic lesions. New focal area of interlobular septal thickening and some ground glass opacity in the inferior right upper lobe which may be inflammatory or early lymphangitic carcinomatosis. Focal soft tissue thickening adjacent to the sigmoid colon may be inflammatory (diverticulitis) or early peritoneal tumor deposit. No ascites. Osseous metastatic lesions in the thoracic and lumbar vertebral bodies, stable on CT.
4.20.20 Topotecan started. 2 to 3 cycles before next CT scans. Brain MRI is scheduled up next.
4.27.20 MRI of head results: Brain mets.
5.4.20 (WBRT) Whole brain radiation therapy-10 treatments.
I read the MRI report this morning. They counted 15 spots on his brain. He has lost a few more pounds despite eating. Doc has him on a steroid for any brain swelling. He is finally sleeping right now. I am not panicked yet, but don't want to screw up either. I have oxycodone and lorazepam here. He doesn't seem to need them daily or on any sort of schedule. Can you take these other meds while being on the steroid? You see what I mean when I say I don't want to screw up. He is in some pain and it's very hard to watch. This is a very aggressive cancer and he knows it will win, but best I can tell, he still wants to live. I have told our children that he drives the boat. To let him feel what he is going to feel and we need to support him as best we can. Back in Nov. he cried a lot and was worried no one would treat him due to his smoking and lifestyle. I told him, NO-you lived your life the way you wanted despite knowing there is a risk of dying from smoking. Now is not the time for 2nd guessing yourself, blaming yourself, or having others judge you. His MO, the NP that also sees him, all the nurses, and everyone at the cancer center just love him. He's quite the character. Very friendly and talkative (thanks to the steroids). It's hard seeing another decline and the beast beating him up. I can still look forward to radiation killing these mets, and giving him some more time here on earth. I know I don't control it, and I hope I have the strength and knowledge to deal with any new side effects. I let the fear of death surface every morning, but I then quickly put it away and carry on with the day. We are blessed with overwhelming support from family and friends. That is a huge help.
My apologies this is so long. If you have a similar story to share, I look forward to hearing about it. I'm trying not to fear being lonely when he's gone, or what my life is going to be like. I think I'm not to that cycle of grief yet. My fear now is keeping him comfortable and to avoid as much suffering as possible with whatever time he has left. Thank you all again for listening.