Battling Advanced Lung Cancer - An Update on My Mother’s ConditionCategory: Primary Menu Life Lessons
It’s been a difficult last five months for my family as my mother battles her lung cancer. It’s a private battle that I have shared very little of on my blog, but I think mostly because I have tried to put on a brave face. It is easier to not admit to yourself the severity of a situation when you keep pushing forward and keep a strong persona on for the world. When my mother was diagnosed with Stage IIIA lung cancer on September 9th of this year it hit us like a ton of bricks. However, we were very hopeful. We were told we caught it early and that we would go right into chemotherapy treatment and radiation. For 3 months my mother went every single day Monday through Friday for radiation, a ride that took 25 minutes each way. She also did chemotherapy for up to five hours a day once a week. She did everything she was told, she followed all the therapy. She spent so much time on getting better; the scans, the blood work, the doctor visits, the tests. For her last five months she’s just been living to fix her cancer. Over time she began to lose weight, wanting to eat less, complaining of more and more pain, sleeping more, battles of depression of not being able to do much of anything other than sit on the couch and watch television. She could no longer visit her favorite pubs to chat with friends over a drink, go to her favorite place to eat to get her favorite meal…cancer took all those wonderful, simple joys away from her. But, we were still hopeful…
In the last month her health started to get worse. She finished her chemotherapy which had stripped all life from her. She was sick all the time. She was vomiting everything that went down her throat, water, food, chicken soup..nothing would stay down. She went from 110lbs down to 87lb. She is always cold and no amount of blankets can keep her warm. This past weekend she could no longer walk on her own without assistance. Her muscles are all gone and she can no longer even hold a cup of hot tea which she so used to enjoy. Her inability to do for herself has been one of the hardest things to watch. My mother is a very independent woman, stubborn yes, but she can do anything herself. She taught me that as a child and it’s something I have kept with me to this day. As a child my parents divorced when I was three. My mother took on two jobs and sometimes three to make sure we had what we needed. She was always there to help me through any struggle, so now the tables are reverse as she goes through the toughest struggle anyone has to ever go through.
Cancer strips you of your life while you are living it. Yesterday we brought my mom to the emergency room. After a week of refusing to eat, and then episodes of vomiting up brown and black color fluids, we brought her in. After some x-rays and blood work they realized she now has an obstruction of her stomach or intestines. This happens in advanced stages of lung cancer. The body begins to no longer need the extra calories from food and they intestines or bowel can get lodged for a variety of reasons; matter that was unable to pass that then gets lodged and hardens, the cancer may have spread to the stomach area and tumors may be blocking the way, or the intestines my be twisted which can happen with drastic weight loss. Today they are going to try to address the stomach issue, but at this point in advanced lung cancer, I have been told they will only treat symptoms or new illnesses, but they will no longer try to treat the cancer. This to me was a blow to hear, so basically at this point my mom will just be eaten away by the cancer as it spreads through her body. I can’t imagine that there is nothing more that can be done. She does have the prescription Tarceva, but she was not well enough to start using it. I am wondering if we should try giving her that, I don’t know that it will save her, but I hate thinking that there is something else we can be doing that we aren’t.
Seeing your parent battling advanced cancer is the hardest thing a child will ever have to do. To watch them in so much anguish and pain is heart breaking. I have to say that right now I am numb, I don’t know what to do or say to her. I don’t know if she knows that she is dying, or if she knows that it is coming soon. I don’t know when they think her body will give up – I don’t know a lot of things. I never would have believed her stage 3 cancer would turn into terminal. I don’t know that I believe the doctors did everything they could. I wish we tried non western medicine as other options. I had bought her b17 supplements which I heard can help with killing cancer cells, but my mother never took it. She wanted to follow “what the doctors said” but in the end I don’t know that they would have wanted her to try anything other than chemo and other drugs and radiation. I did get the feeling that lung cancer came with a stigma, my mother was a smoker her entire life. I grew up living in a house of second hand smoke, I wonder sometimes what that will do to me someday. I think that is why I am so focused on living a healthy and fit lifestyle. Your health is the only thing you really can try to have control over. I wish my mom would have a turn around, a miracle, some way to bounce back from this cancer.
What you find when your loved one is going through cancer is it makes you helpless. You try to keep them happy, occupied, enjoying life all while at the same time the thoughts in your mind go back to “time”. How much time is left, do we have enough time to do this or that, in the time we have left what should we do. It’s the worst feeling in the world to look at someone fighting so hard and know that perhaps that fight is not going to be enough. I hold back the tears and sobs when I am with my mom, to keep a brave face for her so she doesn’t know what is coming. I am actually going to work to get a second opinion tomorrow even if it is late in the game, it’s worth a shot. I don’t know that I trust the care team she has at her hospital, I also believe they are now giving up on her. They keep mentioning “comfort care” but I want to keep finding ways to keep her alive, not help her find ways to die peacefully. I am not ready to let my mother go yet, I am not ready to watch this unfold that way for her or for me.
I guess I wanted to share this with my readers to show that yes I am human. My life is not always perfect and my blog was never meant to be just about one type of thing. It was meant to show people all aspects of my life; both good and bad and happy and sad. What I hope to come from all of this with my mother is that she will not be in pain. That she will not be afraid or scared, and that she will have peace and comfort. I will continue to see what options are out there, but to be honest in the condition she is in, I don’t know how much more her body can go through. She is so weak and fragile that I don’t believe treatment will help, but who knows. I am set to be married in a few months, it kills me inside to think my mother won’t be there for that. To see me walk down the aisle and hold my hand to walk down it with me. It was something that meant so much to her. I hope that she will make it until June 6 to see that day. In the meantime, I hope that anyone who has a family member going through advanced care or stage 4 lung cancer know that perhaps there is a better outcome for you. What can you expect? You will see major changes in your loved ones health, but don’t let them see you sad. Let them see you composed, with love, don’t let them know you are giving up on them. Be strong for them, hold their hand, talk to them, keep them in good spirits. Fight for them, even when others tell you there is nothing else that can be done. I will not bow out and just roll over, she would never do that for me.
Update 2/17: Today my mother underwent a bunch of new tests to see what might be the cause of her constant stomach pain and inability to eat or drink anything without it coming right back up. They did X-rays and also a CT scan as well as an endoscopy. They found an ulcer in her esophagus as well as gastritis in her stomach. Both of those combined has been causing issues with her ability to eat or drink anything and keep it down. They are treated her with pro tonics which help to coat the stomach lining and allow these open wounds to heal. That will help to hopefully allow her to eat and drink again. That I think will make some difference in allowing her to get back to eating some food and getting some nutrition. If she can do that perhaps she can get some weight on her and strength again. I do not know what happens from there but at least then there is a good chance she can spend some time feeling a bit better and not go right to the dreaded outcome of going right onto comfort care. I don’t want to just have my mom go home and do nothing but take pain medicine all day. I want her to be able to enjoy some food, read books, see friends and family and figure out what we can do for her cancer as well. Hearing everyone say “we will no longer treat the cancer” just doesn’t sound right or sit well with me. Don’t give up on your family member, do whatever you can to keep exploring your options.
Update 2/19: The days are now all a big blur but I wanted to keep logging what is happening here. Why? 1) maybe it will help another person who’s loved one is going through this journey 2) I want to shed light on how bad some medical care for cancer can be 3) inspire you all to take charge of your treatment or your family member’s treatment. Yesterday when i arrived at the hospital my mom was in tears. I was also faced with the decision to have my mother undergo emergency surgery. It turns out the CT scan they did the day before showed she did in fact have a blockage in her intestines/small bowel. The scan also showed that the blockage was a 5cm tumor which was not allowing any food or liquids to pass. THIS is the reason she was unable to keep food or water down for about 2-4 weeks. This is also why she was losing so much weight. This entire time we had thought the inability to eat, the vomiting and weight loss was a result of chemotherapy. Was it part of it, very likely, but inside my mom’s stomach a tumor had grown. The bigger concern is finding out “Why was a PET scan not done on her entire body to see if her cancer had spread to any other part of her body?” “Wouldn’t you have detected that if you were doing routine checks to see if cancer had spread?” Her two options were to either have a tub with a mercury ball pushed from her nose down through her entire digestive track to try push out the blockage (which makes no sense, its a tumor, it won’t just get pushed out it needs to be removed) or have surgery. The surgery would remove the area where the tumor was and then reattach the sections so that soon she could eat again without the blockage. I opted for the surgery asap, it was a quick decision but the right one. My mom was scared. She heard the words “tumor” and “operation” and started to cry and panic. I comforted her and told her this was the best approach. If we can fix her stomach and get her back to eating, then maybe we can get her weight and strength back up and then work to fight the cancer again.
Mom went into surgery and the tumor is being sent to the lab to biopsy. In the meantime they said they also found some cancer ‘seedlings’ which from what I gathered is tiny cells nearby that may be cancerous, but they did not remove. The goal was the remove the tumor and repair the track for her to be able to get food and liquids down again. She woke up in pain, horrible pain. Every cough she did her stomach ached. They have kept her highly sedated so that she won’t move or feel the pain, but thankfully I got her into the hospital when I did. Otherwise she would keep being unable to eat or drink and wasted away. Yesterday I met with her oncologist, and decided no more Mrs. Nice Guy. I asked direct questions:
1. how come no scans were done in the last few months to see if my mother’s cancer spread?
2. why was I told she was now in “stage 4 advanced” cancer when you had never done any updated tests to see WHERE her cancer spread to?
3. where is the scans of her brain, bones, etc. don’t you need to run them also to see if she has cancer anywhere else?
4. if her stomach gets better, and she starts to eat and get her weight back up, do you plan to do chemotherapy to prevent the spread of any other cancer?
5. can she start to take the Tarceva once she is feeling better again? if the cancer in her lungs is as you say “stable” wouldn’t you be able to restart treatment as soon as her weight gets back up? Why would you stop treatment completely?
6. why did her other oncologist, your partner, tell me on Monday that she was so advanced that you would not do any more treatment and she should consider comfort care, before you even KNEW she had a tumor anywhere else?
The truth of the matter is, her hospital is crap. The doctors she has been seeing are crap. I wish I was able to have made more of the decisions about my mother’s care, but now I am stepping in. I am working tirelessly to obtain all of her medical records from the day she was diagnosed to yesterday. I am sending all of that over to another doctor that comes very highly recommended to get a second opinion. I truly believe you need a second opinion when it comes to cancer treatment. IF one doctor tells you there is no more treatment options, go somewhere else. I refuse to believe that my mother is getting the proper care or the real chance to live. Two days ago I was being told it’s time to say goodbye, get ready for hospice, today I am getting her the helk out of there once she heals from her surgery. Don’t let anyone tell you there is nothing more you can do. You have to fight, fight for your loved one. You owe it to them to keep fighting and getting the answers. I refuse to give up on my mom – I will keep pushing forward to get her the care she deserves and needs. I hope that in a few days I have a better update to share. I am waiting to find out if they will do the additional scans and then wait to see what they show. If they do show cancer in the rest of her body, her doctors really did drop the ball. They should have been doing scans every few weeks to monitor the spread. They hadn’t done anyone other than a scan of her chest, where the lung cancer is. I shouldn’t have to tell doctors how to do their jobs. I shouldn’t have to bring my mom into the ER to get them to finally do the tests they should have been doing all along. I shouldn’t have a doctor on Monday tell me my mom is basically a lost cause, when her other doctor says something completely different. Let’s keep the faith and I will update you all soon!