Broken - Part 1

Spoiler: I apologize in advance for the bitch fest rant that I am about to unleash. I normally don't complain or am angered to this magnitude. But when it comes to sheer incompetency at the risk of lives - I cannot help it.

First things first...as you know mom got discharged Friday afternoon from the hospital and into a transitional rehab care facility called Robbinsdale Rehabilitation & Care.  Dr. A along with the hospital staff worked tirelessly to make sure the Robbinsdale Rehab would have all the direction they would need to facilitate care for my mom for the week or so she was going to be there. I was told that everything at the other end was good to go and that they were ready for us. So, we got discharged, loaded mom up and head to the rehab facility. I was so happy that mom was going to get the care she needed, and I was happy to have some of the stress alleviated off of me. But, things quickly took a sour turn.

We arrived at Robbinsdale Rehab around 6 PM and were told that once I arrived that their staff would assist me in getting mom from my car to a wheel chair as well as getting her oxygen hooked up right away. But instead, I was directed to track down a wheel chair and get her to the room all by myself. When I struggled to get everything together (being 6 and a half months pregnant didn't help!), I went back in and asked for assistance. They seemed annoyed that I was bothering them.

While getting mom from my car, they had to unhook her oxygen from her. Typically, when we've done this before, there's only like a minute time span when mom is completely off of her oxygen and they hook her right back up. But, the nurse said we'd hook her back up once inside. I said ok and told her that we must be quick in the transition since I didn't want her breathing to act up. I quickly went to park my car and hurried back to mom's room. Mom was there in her wheelchair just waiting. The nurse had just left her there and didn't even hook up her oxygen. I looked around and couldn't find anyone. We must've waited for 20 minutes until the nurse returned...holding a plate of food for mom.  She told me she went to get dinner. I was livid but bit my tongue. I couldn't believe she was more concerned with bring my mom a few chicken nuggets and some mixed veggies THAN oxygen!  I told her that we needed to get mom's oxygen hooked up right away...she looked at the tank and said that she didn't know how to operate it and she'd be back. She was gone for another 10 minutes...then finally came back and hooked mom up to one of their barrel-like oxygen tanks..which I could barely move due to the weight. And for sure mom wasn't going to be able to in her weakened state. I noticed that the cord was only a few feet long too and if mom were to have to get up, she couldn't without unhooking her oxygen. Lovely!

I attempted to get mom out of the wheel chair and into her bed. I noticed that there was just one flat pillow and asked the nurse if we could have a few more since mom has significant breathing issues and she needed the support to be propped up at night. Her response was, "One is all they get". I got mom as comfortable as I could but I could tell in her face that she was absolutely miserable....tears began to settle in her eyes. The nurse left the room and mom pretty much told me that this wasn't going to work out. I couldn't have agreed with her more. I told her that I'd contact Dr. A or his back-up first thing tomorrow. We agreed that she'd stick it out for the night at least and see how it went.

I hung out with mom awhile longer and at around 9 PM, the admissions counselor came in. I asked her when mom was going to have her nightly medications and TPN as they were already overdue by a couple hours. She said that they didn't have half of mom's prescriptions in stock. I told her that the hospital had called over to ensure they would be prepared and were told they had everything and were ready to care for mom. She told me she'd see what she could do but seemed annoyed at me.

About an hour or so later, I was starting to get tired. Mom insisted that I head home and get some rest. Reluctantly, I did, but I left with just a pit at the bottom of my stomach.  As I drove home, I just cried. I could not believe that this was the best there was to help me care for my mom.  I just felt so broken. I couldn't sleep at all that night.

Winds of Change

Yesterday (Friday) so much happened! It still amazes me how much can happen in one single day. It's as if I am on a roller coaster.

After talking to the social worker in the morning, we were able to work around getting my mom some much-needed 24 hour a day care. She was able to find a transitional care facility who could take care of all of mom's medical needs and also help mom get a bit stronger since her legs were filled with so much excess fluid. Since all of the residential nursing homes and hospices were denied by insurance, this was really our only route at this point in time. The social worker did also contact the only free residential hospice in the area and we were placed on a waiting list. 

As all this was happening, mom received her ct scan results late Thursday night. I had originally requested him to do a ct scan the day prior just because I was curious to see the progression. I wanted to make sure we were making the right call on hospice. Deep down, I had this overwhelming feeling that her story was not done yet and I could tell that the only reason she was willing to give up the fight was because she thought that she was being a burden on me. She thought that by her being gone that I would not be so stressed, especially dealing with my pregnancy. I had a serious problem with that line of reasoning. I was not willing to let her throw in the towel for all the wrong reasons. I know she loved me and cared deeply for my well-being but this was her life...and you only get one shot at it.  I gave the go ahead to do a ct scan.

Late Thursday evening, we got the results. To Dr. A's surprise, the cancer in the stomach and the metastasis in her lungs had not spread at all. There was no growth and was still considered stable which was quite amazing since she's been off treatment for two weeks and diffuse cancer is just rampant. Yes, there were complications (primarily blood clots) along the way with medications and the cancer itself but she fought through that too. Daily blood work showed that the blood clots were controlled and she was out of the woods at least on that. 

This got mom along with the four of us thinking! We did not want to pressure her by any means to continue treatment but at the same time, we offered all of our opinions. On Friday afternoon, mom, Dr. A and myself met with Dr. A. We asked him his take on all this. He said that mom was doing remarkably well and he thinks that she still has fight in her yet. I asked if could give the second cmet drug a shot and he thought it was a good idea. He said at this point, it is an unknown and if mom wanted to try - it was worth a shot. And he would get the ball rolling on getting it dispensed but it would take a few days to a week. But in the meantime, he suggested for her to do some transitional care at a rehab facility. He wanted to make her stronger and was hopeful that the rehab facility could help her.  He was going to leave detailed instructions on her care for them to follow and said to keep him updated once mom is discharged later that evening.

Background on Hereditary Gastric Cancer

** I received this background from the BC Cancer Agency in Canada. I thought I'd share it because it explains a lot of useful information on HDGC.

Worldwide, gastric (stomach) cancer is the second most common form of cancer. Although the total number of individuals diagnosed with gastric cancer have been decreasing over the years in North America and Western Europe, it is still relatively common in certain parts of Asia and Latin America.

The stomach is part of the digestive system and is located in the upper abdomen under the ribs. Gastric cancer can develop in any part of the stomach and may spread throughout the stomach and to other organs. Gastric cancer is treatable if it’s diagnosed in the early stages of the disease. The 5-year survival rate for gastric cancer is 90 percent when the cancer is detected in its earliest Stages. When the cancer has spread, the outlook is not as good for the patient. Unfortunately, most people do not receive a diagnosis until the cancer is more advanced. The reason for the lack of early diagnosis is that the cancer is difficult to detect in its early stages. Generally, there are no symptoms and the only evidence may be microscopic bleeding from the surface of the stomach. By the time symptoms do occur, the disease is often at a more advanced stage and no longer treatable. The diagnosis is sometimes made more difficult because the symptoms are very similar to those caused by ulcers.

The exact causes of gastric cancer are still largely unknown. Most cases of gastric cancer are sporadic in nature (that is, not inherited). Some of the risk factors in the sporadic cases include increasing age (generally people over 60 years), dietary factors, Helicobacter pylori infection, smoking, alcohol consumption, and a disorder of the blood called pernicious anemia. In about 1-3 % of all individuals who are diagnosed with gastric cancer and who have a strong family history of gastric cancer, the condition is caused by inherited mutations (changes) in genes that predispose individuals to gastric cancer.

There are 2 main types of gastric cancer - diffuse type and intestinal type. The intestinal type is more common than the diffuse type. The patients are usually older, patients are more likely to be male and it forms a typical visible tumor in the stomach. H pylorí plays an important factor in its development.

Diffuse type gastric cancer is somewhat more common in younger patients and it occurs in similar numbers in men as in women. It is not known what role Helicobacter pylori plays in the development of this type of cancer. Diffuse gastric cancer often presents with diffuse thickening of the stomach wall, rather than a visible mass (linitis plastica).

Inherited information is contained in structures called chromosomes that are found in every cell of our body. We have 46 chromosomes that occur in pairs; 23 from our mother and 23 from our father. Each chromosome is made up of hundreds to thousands of genes. Hence, the genes also come in pairs. Genes are packages of inherited information and act as instructions for making proteins (specific substances in our bodies) that help it to function properly. An alteration in this genetic information can cause a change in the instructions of the gene and interfere with normal protein function and hence proper body functions. These gene alterations are called mutations. There are certain genes that cause an increased chance to develop cancer when they have mutations. These genes are known as cancer susceptibility genes.

Most cancers occur as a result of sporadic mutations that occur in the body during a person’s life-time.  These mutations tend to occur as mistakes when the cells undergo division (a normal process) or in response to environmental factors. These mutations are not passed on to children. Hereditary Cancer occurs when a gene mutation is passed down from parent (through the egg or the sperm) to child. Since the mutation is present right from the beginning, it is found in every cell of the body. Cancer will develop only when both genes in a pair are mutated, Hereditary cancer tends to develop at a younger age since the individual is already born with one mutation and needs only to acquire one additional sporadic mutation in the other gene for cancer to occur.

There are believed to be several genes involved in hereditary gastric cancer. One of these, E-cadherin (or CDH1) is mutated in only one-third (33%) of the families that have hereditary diffuse gastric cancer. That means that other families with either the diffuse or intestinal type gastric cancer have mutations in other cancer genetic susceptibility genes.

E-cadherin is located on chromosome 16. Everybody has two chromosome 16’s and therefore two E-cadherin genes. E-cadherin is an important protein that helps to hold cells together. In cancer cells, when E-cadherin is either partly or completely missing, the cells detach themselves from each other and from the whole mass that holds everything together. If an individual inherits one E-cadherin gene with a mutation, damage to the remaining normal E-cadherin gene may be the event that starts off the stomach cancer. In individuals who inherit a mutated E-cadherin gene, the chance of developing stomach cancer depends on whether the person is male or female. In males, the chance of stomach cancer is 67% over the lifetime. In females, the lifetime chance of getting stomach cancer is 83%. Females with the mutation are also believed to have a 39% lifetime chance of having lobular (the part of the breast where milk is made) breast cancer. Therefore, not everyone who carries the mutation develops cancer but the risk is increased considerably over the general population risk (2000 times higher than the general population). When one parent carries a mutation in a cancer susceptibility gene such as E-cadherin, each one of his or her children has a 50% chance of inheriting that mutation. Males and females are both capable of passing the mutation down as well as inheriting the mutation.

A New Chapter

Since mom made the decision to stop cancer treatment a few days ago, I feel like this opens a new chapter in this story. Even though it's taken a big emotional toll on us, we are prepared for the next stage in all this. For the past seven months or so, I've been mom's primary caregiver.  I've come to realize that the best care for mom right now getting her into a facility that give her 24 hour care and comfort. Now is the time to step back a little from the care giving aspect and spend as much quality time with her as possible. I am still planning on being apart of all the decision making, and being there for my mom but right now I need to lean on the support systems I have available. My husband and I are the only family here and we've taken on so much since mom got diagnosed and it's come to a point where we can't do it ourselves anymore. But, at the same time, we know that the best care for mom is to rely on a system that can assist us.

Over the last week,  we've had quite a few conversations with the social work team and medical staff about all this. We have a lot of decisions to make and a lot is still in the works. Sorting through the insurance has been such a big headache too! Apparently mom's insurance will not cover residential care hospice...yup, you heard me correctly. We found this out yesterday and I was ready to literally pull my hair out! It's just plain heart-breaking...we've been going through so much as it is and then to have this road block. But we will keep on looking at options and trudging on...

The Darkest Days

These have been my darkest days thus far. The last couple days I feel like my heart has shattered into a million pieces. So much has happened in just the matter of a few days.

First things first, mom's catheter was removed today. Ever since it was surgically inserted it's been causing her a great deal of pain. They tried to drain fluid out of her lungs and there was a striking pain. They waited a few days to see if would get better but it didn't. It got to the point where she would just have to move a couple inches, or cough and she'd be groaning from the pain and had to take morphine. She was just miserable.

Yesterday I spent the entirety of the day talking to a slew of people while I sat and watching mom as she tried to get some rest. I met with the pharmacist, the palliative doctor, the pain management nurse, the physical therapist, the chaplain, the social worker and Dr. A.  They all are working together to make mom as confortable as possible and give me some much needed support in various realms.

The most important meeting of the day was meeting Dr. A and the palliative doc. Mom told them that she wanted to stop treatment once and for all. The side effects are just too much to bare anymore and she is just choosing to be free of it all.  She's been on so many meds these past few months, that she takes drugs to offset symptoms of other drugs she's taking. It was hard to hear her say those words but I respect how far she's come. Yes, I yearned to find out if one of the c-met inhibitors could make an impact on diffuse gastric cancer in our family but it will not happen. And,  although some might say it was all for nothing, I don't agree with that.  I fought each and every day to get to the next.  Together her and I took this journey together and each day was truly precious and I wouldn't trade that for anything. I love my mom immensely and I will always do what's right by her...even if it means letting her go.

How I Am

Lately quite a few people have been reaching out to me offering their love, support and kinds words. I can't thank you enough. I keep getting messages from all over the world telling me how I've inspired them in some way and that does feel good to know I am making a small impact.

I also get asked quite frequently, how I am doing? Honestly? I don't know. And people telling me that I need to take care of myself.  I was talking to my husband about it practically burst into tears because I told him I just didn't know how to. Life as I know it is in a complete whirlwind and I am hanging on by just a thread...but hanging on. He gave me some advice and we are going to figure things out. Instead of being caught up in all the time consuming crap like packing up my mom's things in her place or renting it out...find people and pay them to do it for you. This will help ease the burden of the mountain of things that seem so hard to tackle. Cause it's just too much for one person to handle.

As for me, I have been talking to a couple caregivers who've been through this before.One of them made me think about things a different way when she said that the reality of it all is that I can't take care of myself because the fact of the matter is my focus is now on mom. The whole aspect of "taking care of yourself" just gets defined a different way from what it was before this all began. It's the simple basic things now that might not mean much to people...taking 5 minutes longer to enjoy that warm shower, allowing yourself to sleep in for a day, going and treating yourself to coffee or dessert etc. Though these things will not significantly impact your life, they are things to find you again and keep holding onto your sanity. Because if I crash, I am useless to my mom.

So today, as busy as I was, I took a lunch break just by myself and enjoyed something I loved and haven't had in over 6 months.

Bowl o yummy pho!

PleurX Catheter Procedure

Late yesterday, mom had a pleurX catheter surgical procedure to help drain all the fluid that has been accumulating steadily. The catheter, compared to a thoracentesis,  makes it lot more convenient to drain. It can be done multiple times a day/week and can be done at home by the caregiver. I've already read up quite a bit on the process and it seems very easy to do. This will definitely alleviate the stress of having to rush mom to the ER anytime her breathing acts up.

The procedure itself went very smoothly. There was some risk of mom bleeding out because she's been on blood thinners but all went ok.  Mom is still in the hospital and recovering from the procedure. They are also trying to get the blood clot situation under control. She's been encountering some other issues as well 1) her blood sugar levels are super high and 2) her heart beat is faster than normal. They are unsure what's causing it.  My hope is the blood clots are causing all this and if they can get that under control, she can start feeling some relief. The fluid buildup is highly concerning though. In the procedure yesterday, they drew out 875 cc's and then early this morning again, her breathing acted up and they drained another 300 cc's. It's just too fast! I'm very worried by all this and I am forcing myself to take one thing at a time.