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Fri, Sep 13 8:15am · Feel so lost in Loss & Grief

This is my first post to this group. I had no idea Mayo Clinic had a Loss & Grief group. 6 years ago I moved to AZ to be closer to my aging parents. I left an abusive marriage after 16 years and was finally able to be near my family again. Only thing was, within 2 years, my mom was my caregiver- I was diagnosed with breast cancer and was undergoing treatment. My mom was my Hero, she survived ovarian cancer 36 years prior, and I couldn’t get through it without her. Then, in 2018, my mom started to not “feel well.” Doctor after doctor, they all said she had anxiety, indigestion, asthma, food allergies, hiatal hernia. No doctors ever sent her in for any kind of testing. They all said, due to her older age, there was no need to start testing. Elderly people are treated so poorly in Arizona! By March 2018, we were in the ER quite a few times. My mom was getting very weak, she could no longer hold food down, and she was starting to fall at home. The paramedics were called several times to help her up off the floor when she fell and couldn’t stand back up on her own. By April 2018, she went in for emergency surgery for a “ruptured intestine.” Then during surgery, they found a huge tumor that was blocking her stomach and intestines. The surgeon said it was beyond his s one of practice as he was a General Surgeon for the ER Department but he was educated enough to know he needed to place a permanent feeding tube in her and refer her to oncology. He told us it was not encouraging for a good prognosis, but suggested if she had the will to live, they maybe could if she could gain strength back have chemo to shrink the tumor and surgically remove the tumor and then remove the feeding tube so she can continue treatment to possibly stabilize the cancer. All my dad heard was “she will have chemo, remove the feeding tube, she will be cured.” He already hit the dental stage that my mom was not doing well. And I was all alone in this fight to help him through this. My “sister” lives in Maryland and only involved herself when it benefited her. My youngest son lived nearby and he and I were up against an incredible fight to not only help my mom through what she was going to face when she woke up from anesthesia, but now with my dad’s reality of losing his wife of 56 years.
It took several days for the biopsy to return to us. The oncologist asked us to meet with him. Guilt #1. I was sick and had an appointment with my PCP to get a clearance to return to work so I couldn’t be at this appointment with my mom at our mutual cancer clinic, but I agreed to attend by conference call. I could hear my mom crying for me and begging for me to be there with her. My dad again still in denial, decided he hated this oncologist because the oncologist gave my mom 2-3 months to live and stated she would not survive through chemo. My dad only heard, she will be cured after having chemo, surgery, and she will eat again. He expected of me to line up several 2nd opinions with my mom, who was fully bed ridden now and 100% on a feeding tube with stage 4 adenocarcinoma with an originating diagnosis of stage 4 pancreatic cancer. My mom chose to go home and have palliative care work with her, I did what I could driving over in the morning, at lunch, and after work to help with medications and feeding as well as taking her to the bathroom and changing. My dad became very angry with me saying I saw him as an “idiot” when I asked him if he would be able to help with the feeding tube while I was at work as I was not going to be able to leave in an emergency to get to them. He started yelling at me every chance he got. He kept asking me when the 2nd opinions were happening. I was using all extra time calling cancer clinics and learning that if she wasn’t outpatient and walking, she probably was not going to be accepted. I asked each one of the ones who agreed to schedule with her to call her directly because she would know her own schedule. The day she told me U of A said they don’t accept her insurance was the day I knew she was accepting her own fate and she did not want to move forward. I knew they took her insurance, they told me, but I let it go. My mom went into hospice and stayed home. My dad continued to yell at her when she said she needed help going to the bathroom. She would call me, I would go to their house in the middle of the night to help and of course get yelled at too by my dad for the interference. He had these ideas my mom was going back to her childhood and pretending to be a little 6 year old girl needing to go to the bathroom, but doing it for attention. My mom would have an accident, start crying, fall on the floor, call me and it would start all over again….until 7/1, she fell out of her bed bleeding internally in the middle of the night. She was rushed to the ER, then to a hospice hospital where they kept her heart beating until family could get there to say their goodbyes. She passed away at 2:10pm, 7/1/18.
Hospice said my dad had to move in with me, he was unable to make good decisions on his own. He was not happy with this. He and I already had the strained relationship left over from my mom’s illness and death. I was driving him back and forth all hours of the night to their house, the bank, the stores they frequented, restaurants they always went to, etc… one night I got home from work late. He said, let’s go out for dinner. I told him, No, I have to feed the dogs, I’m tired and there are things in the refrigerator. I go to the refrigerator and tell him what’s in there, he ignored me, and said “let’s go out somewhere I’ll pay.” I told him, “can you just be grateful for what others do for you?” His response was, “I don’t have to. I just have to be kind.” That’s basically the last thing he ever said to me. He went into another room, called my son to come pick him up and take him back to his home. He decided to live in his home while it was up for sale. He never responded to any of my phone calls. I finally got a call from the hospice social worker that my dad was found in a pool of blood on the floor of the family room. He was rushed to the ER. I left work and met him there. I’m the Assessment he called me his sister (who he hated) and yelled at me, cussed at me, threatening me in the ER and the hospital. I have a therapist I see at my cancer clinic who recommended I not communicate with him during this emotional time as I was preparing for a very hard Neurosurgical surgery. I had multiple complications and almost didn’t survive. My “sister” took it upon herself to cut me off of all planning for all preparations for my dad and my dad then started telling stories to all he knew that were not true about how horrible I had been to him. After I was allowed to leave my home and return to work (8 weeks), my dad entered hospice at a nursing facility. I went to see him several times and cried over our relationship. He was sweet to me in front of other people or family, but abusive to me when we were alone together. He passed away on 10/4/18 3 months after my mom passed away and I was called 30 minutes after he passed, after the hospice nurse called my “sister” who lives back east, even though I lived 20 minutes away, and when I picked up his stuff, I found out that hospice nurse knew he was having difficulties the night before because he aspirated but never called me. My “sister” and I were both equally POA’s but she chose and my dad chose to exclude for reasons I still don’t understand. I had to hire a lawyer to solve trust fund issues as my “sister” stole everything and even told the mortuary to not include me in the funeral preparations or the upcoming memorial for the unveiling of the memorial plate and I own the plot property. Due to my cancer diagnosis and a spinal cord injury and Ongoing spinal cord disease, I don’t have the fight in me, but I don’t understand why all this was done to me. My dad blamed me for my mom dying of cancer, I have guilt for that. I’m not my dad’s sister, I didn’t abuse my dad, they were choices he made, but he has passed away and there is nothing I can do to tell him or repair all those relationships he tore down with lies and false stories he spread while I was trying to recover and live through traumatic neurosurgery, right after my mother passed away. Sorry this is so long.

Mon, May 27 8:19am · How many of you have changed oncologists because you did not like the? in Breast Cancer

I had a second opinion a couple of years ago with an entirely new cancer clinic because I felt my oncologist was not listening to me when I told him about the side effects of Tamoxifen I was having. Then, after advanced stage osteoporosis, a TIA, and many other problems with Tamoxifen, and finally showing labs of post-menopause, he switched me to Arimidex, but it was a nightmare and a fight. I went to speak with this other oncologist, liked her a lot. She’s a researcher and a front runner for finding vaccines and other cures for breast cancer. Not that my current oncologist and cancer clinic is not a research clinic, it is, and he tells me all the time about all the research being done on breast cancer. However, he doesn’t seem to really actively listen to me. What triggered me into re-thinking again about changing back to this first 2nd opinion again is last month I went back to my oncologist still having side effects from Arimidex, but I never thought I would hear him tell me he was recommending taking me off at my 5 year mark (April 2020) without discussing it with me first, he just said, he’s stopping it in 1 year! Previously, he wanted me on something for 10 years, I had 1 very large IDC tumor and 2 DCIS Satellite tumors. My tumors were all considered highly aggressive and “unfavorable” on the oncotyping scale. I also have a spinal cord injury so my side effects with a nerve pain are intensified. I discussed this with my therapist and she was shocked he is just going to stop it with me, the patient, giving any input. The reason I didn’t move over to my 2nd opinion is the Clinic is about 1-11/2 hour drive from my house. The other one is 15-20 minutes from my house. They both are considered in the Top10 of the Best Cancer Clinics in the US. My mom was meeting me at all my appointments, scans, etc. She never missed an appointment. But, she couldn’t drive freeways and told me if I switched to the oncologist that was an hour way, she could no longer be there for me. So, I stayed. I needed my mom for support. She was a 36 year cancer survivor. She was my hero. She just passed away this past July from aggressive pancreatic cancer so now my hero is no longer needing to drive the distance and I am once again in the position where I am thinking about moving over. I’m getting close to not needing them as much, or so I thought. Until I had a Prolia infusion. Then I started having shooting skull pain so I called the oncologist and he scheduled me for a mri but he does not think it it is the Prolia but more the SCI. But, if it is the cancer recurrence, then I will decide if I want to switch oncologists. I also found out our oncologists rotate specialties. Mine, who I was assigned to as a breast cancer specialist in 2014, is now listed as a neck and throat oncologist (something like that), but he kept some of his breast cancer patients. I felt he was very wrong and insensitive to me when he told me he was taking me off a medication that is supposed to prevent recurrence when he knows I am devastated and going through the grieving process with losing my mother to a horrible and painful cancer death. So, yes, once again, I am seriously thinking about switching oncologists.

Dec 30, 2018 · Heart and lung conditions post breast cancer radiation in Breast Cancer

Oh and I have never smoked and am bothered by other’s smoke, although I am exposed to passive smoke due to my position in community behavioral mental health and going into homes where others may smoke around me. I have to go home, change and shower after being exposed to second hand smoke.

Dec 30, 2018 · Heart and lung conditions post breast cancer radiation in Breast Cancer

Thank you for your response and information. I don’t have a pulmonologist following me yet, but thinking I need to get one. I definitely will read these articles you shared. I actually lead a very healthy lifestyle and follow a mostly semi-vegetarian/Mediterranean diet, but have difficulties with swallowing due to a 50% functioning esophagus from a spinal cord injury and no gallbladder so I don’t break down fats and carbs. Diet is probably the most difficult for me and the dieticians in the integrative oncology department worked with me for quite a long time. I can’t seem to keep on weight, I’m 105 with a BMI of 17-18, so they’re always worried about my weight. I’m on a few meds that suppress hunger so I’m supposed to “remember” to eat. I walk a lot, about 1 hour each night with my dog and on weekends, 2-3 hours per day. I used to hike local mountains and trails (live in AZ), but as my spinal cord injury and my lung and breathing got worse, I’ve had to bring that down a notch. I do practice deep breathing exercises, I work in behavioral mental health and teach it to many of my own clients (children in state custody) as part of a meditation practice. I’m also back in acupuncture. I just feel the breathing is getting worse and now finding the heart condition 4 years out of treatment scares me. I don’t know if it was an underlying hidden defect never identified when I was younger or if radiation treatment caused it. The cardiologist is pretty sure radiation caused it. My cardiologist is not with Mayo Clinic but I think I want to get a second opinion with a Mayo Clinic cardiologist and pulmonologist.

Dec 30, 2018 · Aromatase Inhihibitors: Did you decide to go on them or not? in Breast Cancer

I was diagnosed Stage 2A, IDC and DCIS, grade 3+, ER+, PR+, HER2-. I took 33 rounds of radiation without chemo and then Tamoxifen for 2 years, but then had a TIA last December and found to have advanced stage osteoporosis. I was immediately taken off Tamoxifen. I had the typical side effects to it, too. I was switched to Arimidex last April after I was found to have gone through menopause in 2015. My worst side effect is the bone Paine in my legs and wrists. I’m in Prolia infusion every 6 months to help with the osteoporosis (I hope). It does effect mood so I take Wellbutrin for that, but just increased the dose the other day. It’s supposed to help with the lack of energy that the depression depletes possibly from the Arimidex. Yesterday, I spent 3 hours Shopping (I HATE shopping!) so I guess it’s working. Arimidex seems to be doing its job, I’ll be 4 years NED on 2/13/19. I would say each AI has their own side effects and they have their own drawbacks and positives. Go for what works best for you.

Dec 29, 2018 · Heart and lung conditions post breast cancer radiation in Breast Cancer

My cardiologist implanted a loop monitor a few weeks ago after I had a TIA last December possibly caused by Tamoxifen and an undetected clotting disorder – Factor 2. Now, a echocardiogram shows moderate tricuspid regurgitatation, which the cardiologist said is related to pulmonary fibrosis from damage to my lung from radiation. I saw my oncologist the other day and he said no way is that possible. Does anyone have any experience with this? I’ve never had heart damage or a heart condition that I’m aware of previous to cancer. Reading up on the condition of course scares me for the future and long term, but the damage is done after 33 doses of radiation 4 years ago.

Sep 17, 2017 · Living with Neuropathy - Welcome to the group in Neuropathy

I was diagnosed with neuropathy when I was diagnosed with spinal stenosis with myelopathy. I have had 11 spinal surgeries. My 3rd ACDF left me with a spinal cord injury after the graft fell out and crushed my spinal cord. I now have an incomplete permanent SCI from C5-C7. The neuropathy has worsened over time since then. I also went through treatment for breast cancer which caused an increase to my neuropathy symptoms. My neuropathy is in both feet, numbness, tingling, pain, feeling of walking on a wet floor, up through my legs with numbness and tingling. My hands and fingers are also neuropathic, same symptoms as feet. Neuropathy hit my left chest wall, shoulder blade, left arm after radiation treatment for breast cancer. Lots of numbness and tingling. After my SCI, I’ve had no ability to regulate my temperature which is complicated by my hot flashes from cancer treatment. I also have lots of memory issues and difficulty with recall. I’ve tried lots of supplements and so far nothing has worked. The last 2 neurosurgeons I have seen didn’t provide much hope for repair or recovery at this time. I’ve been in therapy for the cancer, we work on issues I have related to the spinal cord condition, too. So far, no success. I look forward to hearing from others who may have gone through the same thing, or something similar.