Having a mother with cancer is heart wrenching for any child. But imagine in 2010, and a month after seeing your parents split up, having to see your mom get diagnosed with breast cancer, go through 6 months of chemo, a bilat-mastectomy, radiation therapy, expanders placed and removed , and implants placed. Then have her gallbladder and ovaries and fallopian tubes removed. All of this is hard enough for any child, especially when they were only ages 4,6 and 8 when I was first diagnosed. But after watching her go back to school, and work a wonderful job, for a few years, and her pass the 5 year cancer free mark, they are now believing that the cancer in the past, and we can move on now.
I felt like we were as close to living like a normal single parent household, as we could get. This was the best few years for me and the kids. I had a stable job, a good place to live with the kids, no longer in any active treatment, and even the stress between their father and I, had died down quite a bit. We still struggled financially, but we seemed to be on our way out of debt with the help of a wonderful organization called Opportunity Council. And even though we had little money to spend, we always found free fun thing to do. We were all very active in church, family Bible study time, Awana, youth groups, cancer & domestic violence support groups and volunteer events. Along with the boys being in band, and Amanda in Girl Scouts. I loved this time, and the kids told me, they did too.
But those times did not last. For a year, I got sicker and sicker. I was so sick, that I could not work at all. And I was basically bedridden. I just took care of the kids, (ages 9,11,13), cleaned our 2 bedroom apartment, went to church, Bible Studies and support groups, and a few volunteer events. I couldn't pay my bills with no job. That also meant no income, other than $322 a month total, for child support, food stamps and help from my church and other nonprofits. This was a very difficult time for the kids. We were able to do very little as a family. And didn't always have the money to buy the things they needed . It was all so confusing for them.
Within a year, I was diagnosed with Terminal Mediastinal Melanoma, after many misdiagnosis. And I was given only 3-6 months to live. And some time before that, my kids father had a heart attack. Can you imagine the fear?
Their dad has a heart attack, then their mom ended up in the hospital with a giant tumor in her Mediastinum, fluid in her lungs and around her heart, and 2 blood clots. And you are told she only has 3-6 months to live. How devastating?
They first treated me for lymphoma, then they had me on 2 different chemos for "some type of carcinoma" . Finally, once my info was sent to a place in California, they diagnosed me with Terminal Mediastinal Melanoma, and started me on a new immunotherapy combo nivolumab and ipilimumab. After being treated with it, getting day long infusions, every other week, with lots of "chemo like" side effects for 17 months, they found 2 new tumors in my lungs. And then a month later, my daughter noticed a new lump on my chest wall. And the biopsy came back that it was Triple Negative Breast Cancer. Not the same as my first breast cancer, which was ER/PR +, HER2-. My daughter must have been so scared knowing that I now am diagnosed with my 3rd cancer, and she found it.
I first tried an oral chemo for 2 months. Which made it difficult for me to stay away while we were at a 3 day trip to Southern California, especially while we were at Disneyland. Thank God for the 2 volunteers for our family, and the pre ordered wheelchair. They made sure the kids had fun, and I was pushed around, and awoken for the rides. But despite the chemo, the cancer kept growing, spreading, and became very painful. So my doctor recommended having Radiation therapy for pain. I had 2 different types of Radiation therapies. One on my chest wall, and the other on my lymph nodes under my arm. This did shrink the chest wall tumor, but more grew around it, and I got a gaping chest wound in the lumps place. It basically changed the outward tumor, to a tumor that ate its way through my chest wall, with small tumors surrounding it. But since then, my kids have watched me try 5 different chemo's, which all failed. And in January 2020, my oncologist had the conversation with me, that I feared. He said that we have tried everything that is known to work for your cancer. This last one does not have a very good chance of working. If you want to try it, you can. I stopped him right there. And I said "if there is any chance at all, that it will work, I want to try it. I promised my kids that I would not give up".
I gave this new chemo a try, and after my second infusion, my levels were too low to have my third infusion. I then had another infusion, and the same thing happened again. During this time, I was trying to clean and cover my chest wall wound, that I referred to as "my gaping hole". But it was getting very infected, and ended up eating a hole all the way through to my left breast implant, that I had place during my first breast cancer. I ended up in the hospital with 2 major infections. And I had to have that implant removed. But because of the infections, I was unable to have any chemo. And the doctors didn't see the infections getting better, anytime soon. They said that my cancer was growing so fast that, without treatment as long as they think it will take, they don't think I will make it. And they suggested hospice. I knew I didn't have any other options. But I asked them, if my infection does go away, can I leave hospice, and try treatment again. They said yes. But I don't think they expected it to happen.
But what did happen, is that the hospice got me on the right medications, and taught me how to properly treat my wound. They also suggested a certain topical medication to treat the wound, for the smell. And it did wonders! It not only treated the smell, because it was a topical antibiotic, it also helped the infection go away. Plus, the fact that all of this took place during our states covid-19 lockdown, I went nowhere, and no one except my kids, and my nurses, saw me. So there was way any extra germs founds its way into my body. Thank God! Once my surgeon told me (via a few video appts) that my infection was gone, I called my Oncologist, to see if I could start chemo again. But I was devastated when a few days later, they as a team, did not think I should go back to that chemo.
However, to my surprise, a few days later, my son came to me wanting me to read an article about a new chemo. I told him that no trials were going on right now. So it can't happen right now. And maybe he read an old article. He said that he thought it was the medicine that both me and my doctors have been following, for the treatment of triple negative breast cancer, and to please read it. So I read it. And he was right, it was the chemo that we have been following in trial. And it somehow was approved after only 1 year of trial. But at this time, it did not yet have a name. I read it on a Sunday. And the next day I called to tell my oncologists. They were not yet informed about the drugs approval. And were surprised when I called to tell them, and ask if I could possibly do this chemo. She asked me to email her the link, and she would talk to the team, and get back to me. I am so happy to say that they said yes. (you can watch the videos covering this, below) Once the drug got its name, Trodelvy and my insurance approved it, I started it.
I have Trodelvy on a 21 day cycle. So I have it once a week for 2 wks in a row, then I have one week off. I have had many side effects. The worst of which is a strange effect on my phosphate levels. It lowered it so fast, which is not normal. Before we knew what was going on, I was in so much pain every morning, that I would wake up, and go to walk to get my pain meds, and drop right to the ground in tears because of the pain. I ended up crawling, when I could, which took about 45 mins to crawl from my apartments living room, to me and my daughters room. I ended up keeping my medications next to me, when I slept, from that point on. And I was so happy once they figured it out, and I got the medication kick in, the first time. It also affects my blood counts, alot. I am not sure if it is killing the cancer yet. But I do know that my tumor markers have gone down dramatically! But I do still see some new tumors growing in my chest wall. I should know the answer to this question, in a few weeks. Because I have my Pet-Scan soon. Which brings me to my next topic.
I will be needing to be finding a ride to my Pet-Scan because my car needs lots of work done on it. Just last month, I put my (emergency fund) of $1000 into fixing a few things on my car. One of which was my muffler that was hanging. When they fixed it, the told me that I would need to have an alignment done soon, and that both of my boots on my axles needed to be changed. But then it started to do this banging in the front, and the day I planned to take it to the shop, it wouldn't start. A problem I never had before. I called to tell them that I didn't know if I could get it to them, when they told me that since I just had work done there, I could pay $75 to give me free roadside assistance and towing. So they towed it to the shop, and later called to tell me the list of things it needs. I asked them to tell me what has to be done, to get it on the road. They told me, then quoted me $1000. But the other things would need to be done in the next few weeks, if not sooner. I asked her how much that would cost. She said that she didn't have the exact cost, but it might be $600-$900 depending on what exactly it needs at that time.
I am on disability, and a very small fixed income. Since I have had cancer for the past 10 years, I have used all of the Cancer funds that am aware of. And I have used every resource that I know of. But I know that I have to do something. If I paid some of the $1000, this would leave me with no money to pay my rent or any money for the rest of the month. So I wouldn't have the money to pay for gas or anything else for the month. And the lady said that I might only have a few weeks till or less, till the other things will need to be fixed, before they completely break. So I won't have the money to fix that next month, because I will have to pay 2 months rent by that point. But if I decide to pay my rent, and bills, I won't have a car. And I can not imagine having to find rides to all of my appts. I have chemo 2 wks on and 1 wk off. But I go back for labs every week, and I see my doctor every week, and that's not to mention all of the things that come up from side effects. I tent to be there 2-3 times every wk. I can't imaging looking for rides to all of them.
I have even considered taking a break from treatment, to work again, and bring some more money in. But I know that's not rational thinking. However, over the past week, people have asked me why I don't go to the internet about this need, especially my GoFundMe account that I already have set up. I thought about it, and they are right. I should update you guys. And after reading my first page on my account, I realised that it was totally out of date, and I should rewrite it. I also noticed that my video wasn't working either. So I made another video to post too. I am not sure how much this will help our situation. But at least I feel like I am trying to do something to help. And I will trust that God will provide the rest. Either through the help of those who donate, or some other way. But to those who do give, thank you from the bottom of my heart!!! And God Bless!
If the link for my video isn't working, click here https://youtu.be/tMG-hmvDL38 It should take you to the youtube page, with my video called
"Grosso Family Terminal Cancer Fund"
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