Daughter versus Caregiver

It's been over a week since mom's been at the rehabilitation/transitional facility and so far things are going well. The staff have been exceptional and have really taken a lot off of my plate so that I can focus on being a daughter and less of a primary caregiver as we progress onward. I came to realize as much I as wanted to be the primary caregiver as this cancer progresses, the more I realized that I couldn't do it alone. It's one thing if we had a big family here in Minnesota but we don't, and we had no other family from out of state that could come stay here at this point in time to help out. It was a hard decision but essentially I did what was best for mom's ongoing care and comfort.

I've also come to realize that family is more than blood relationships. Even though I have an amazing family I also have been really appreciating my entire support network. Family has been the friends and loved ones who you can text/email/call at any time (even at 3 am when you can't sleep) or taking you out to have lunch/dinner to take your mind off of things or diverting my mind onto baby-related stuff....the co-workers who check in with you to see if you're doing ok or buying lunch so you don't forget to eat or sharing their similar experiences...the fellow cancer warriors and caregivers who are facing what you are facing but have never met and you can just vent to them about the frustrating stupid crap you have to deal with...and lastly, family is finding a doctor that truly cares for you and your family and teaming up together to work towards the best solution possible.

On Monday mom had to undergo yet another thora and they ended up draining 1,000 ccs of liquid from her left side of her chest. It was quite a lot and most they've drained on one single shot.  The procedure itself went well but while in recovery, she started screaming in pain that was all over her body (even with morphine in her system). I quickly had to page the nurse; it was scary beyond belief. The pain managed to subside after a few minutes. We had no idea what that was about but thankfully it didn't occur again.

My main concern right now is because mom's condition is deteriorating, she is not able to do the required four therapy sessions a day (2 occupational & 2 physical). She's very very weak. If she can't make these sessions, she will be discharged from this facility for not meeting the requirements and we're back at square one again with no place to go to care for mom. Lately, this has been my biggest fear. I've been working closely with the therapy staff to give mom some pep talks and inspire her to do them even when she's feeling like crap. We'll see how it all goes I guess...

Blizzard cheering mom up at his first visit to rehab.

Conversations with My Mother

Several weeks back I received a book from a dear friend whom I've never actually met in person. It was a book called Conversations with My Mother. I "met" my friend through an online stomach cancer support group when mom initially got diagnosed last year. We had a lot in common. Both our moms were terminally ill with this disease, we were the primary caregivers, we both educated ourselves on everything we could get our hands on and we both pushed to make it to the next day. We cherished the good moments and endured the bad moments in our journeys with our moms. End of last year, her mom passed away. I remember crying when she sent me the message of the news.

So, fast forward to a few weeks ago. It was the night I had just come home from leaving mom at that crappy good for nothing rehab facility. I was so distraught, unsettled and felt so alone. I came home and my husband just gave me a big hug and I cried on his shoulder. He mentioned that I had received a package. In it was some pretty darn cute baby clothes and the Conversations with My Mother book. I was so deeply touched by all this. It was like there was someone out there that just understood every aspect of this journey...and that meant a great deal.

The book itself is essentially a guided keepsake journal. It has questions for you to ask your mother about her upbringing, her feelings and life experiences, her likes/dislikes etc. Last night I started going through the book with mom. I asked her questions, we talked, we laughed and I documented the memories that were unfolding before me. There were things I never knew about and it made me really cherish this time I have with her and share whatever time she has left. It inspired me to hear about the amazing women that came before me...my great grandmother, my grandmother and now my mother. All very strong women who worked hard in life and loved their children so deeply.

I really thank my friend for sending this book to me. She's given me a gift that will transcend time.

Rehabilitation

On Tuesday, we got approval for a rehab/transitional care facility that had an opening and could facilitate mom's needs. She's been officially moved in and is settling into her new surroundings comfortably.

From the minute we got there, they started to take care of her in the manner I was hoping for. The first thing they did was actually get her situated and hooked her up to her oxygen. As the nurse was doing this, she said she'd be right back because she had to add water to the tank. She educated us that sometimes if you don't add water that it could bring on nosebleeds and it would be highly unpleasant. I swear at that moment, I swear heard angels singing and saw a halo above her head! LOL.

The nurse did her due diligence and we went over everything about mom's care, even the smallest of details and how to work around any potential issues that may arise. I could tell she was caring, genuine and most important, competent! I felt like they could do what I've been doing for the past eight months and that was a big deal.

She also explained that in order for mom to start feeling a bit better and walking again, she'd have to put in some hard work. She said mom would be doing two physical therapy sessions a day for six days a week with rest on Sundays. I was almost taken back by the commitment because mom has been in bad shape but was pleasantly surprised when mom said she'd do what it takes. The nurse had brought in a temporary walker in the room and mom even told her she wanted to see what she could do now even though her first PT was tomorrow. She got up with some assistance and walked! She really surprised me and the nurse. At that moment I was truly proud of her. It did take a lot out of her but it shows me she's not willing to give up quite yet. There's some drive in her that wants her to feel human and normal again regardless on the outcome.

The past few days, she's had some good and bad moments. Obviously, she's been battling with all the cancer-related symptoms and the cancer progressing but we're doing our best to manage it. I'm hoping she can stay here long enough to walk normally again. Since rehab counts are treatment for her condition, the insurance company will cover 70% of costs. We pay 30% -- it still isn't cheap but it's worth it to make her feel better.

Another plus of the new place, is they happily welcome pets to visit. So I am planning on taking turns to bring my pups. It's been quite a few weeks since mom has seen her grand-dogs :)

Carrying On

It's been a week or so since I've updated the blog. I've had quite a bit going on trying to manage the multitude of things/events going on (hospital visits, working with social worker to find a new place for mom, preparing for the baby in a few months, trying to get mom's place boxed up/cleaned/rented, getting our old home cleaned and rented, my full time job and just the day to day things). My days are very very full. I hardly remember the days where I can just pick up and go to a movie, dinner or just hang with friends. It seems like anytime I do plan something, it always falls through.  So, nowadays, I just don't plan things at all. I do miss the days where I'd go to the gym and have Zumba several days a week...or go to a hair appointment...or having a girls outing and go shopping...or something as to just sit for 10 minutes and do absolutely nothing cause I have nothing to get done. I'm not complaining; it's just my life now. It is what it is and I am dealing with it. I have a good support system at home and will get through this. When I find myself getting into that deep dark place of despair, I focus and immerse myself into baby stuff. So far, it's been a good distraction from all the sadness and it's helped me to carry on.

As for mom, mid-late last week, her hemoglobin dropped to critical levels again. It was in the 7's and so for the first time, she had to undergo several blood transfusions. Seeing her on those days broke my heart...she was so out of it, weak, and frail. Anytime I'd look into her eyes, it was a look of pure hopelessness. During those days and into the weekend, I kept working with the social worker to see if we can find a better place for mom to go. I was on edge because the doctors wanted to discharge her but we didn't have anything lined up. Stressed is not a strong enough word to even use. I took a lot of time off last week to tour some facilities and narrow down potential choices. But, we kept running into the HUGE road block of them not accepting TPN patients or they had no vacancies. And, to make matters worse, there aren't that many transitional/rehab facilities out there and normal nursing homes are not covered at all by insurance.

Finally, Monday afternoon, I got a call from one of the social worker and that one of the rehab places had a vacancy and would be able to accommodate all of mom's medical and physical needs (which is quite the list). I was very happy and relieved because from my initial assessment of them, they seemed caring and genuine. But, I will still apprehensive and on-guard a bit after our previous experience.

 

Holding on Tight

After we left the rehab facility (Saturday), I drove mom directly to the ER. I knew that she'd be in good hands there. After the initial intake and chest x-ray, we saw that mom had more fluid buildup in her lungs. The attending physician decided to admit mom and make her more comfortable until they could drain her lungs again. They scheduled her thora to be Monday since she's been on blood thinners and they needed to make sure the procedure was not too risky since her INR was a bit high.

Yesterday (Monday), mom underwent her thora and has been recovering. She's still in quite a bit of pain and discomfort and is resting quite a bit. I am in the process of working with the social worker again to get this post hospital discharge all taken care of.  I did explain our experience at the previous rehab facility and they sympathized with me. So we're back to the drawing board with this.  Our options are very limited though since we were told insurance would not cover a normal nursing home or hospice. We can only do a short-term transitional care facility...and short term is dependent upon the different facilities' rules.

Tonight (Tuesday), I had a lengthy conversation with Dr. A about mom's current prognosis, our options, his assessment of the care going forward and lastly, me.   He told me that he was very concerned about me in all this and what I've had to deal with so far and said the coming weeks will be harder. He wanted to make sure he was there if I needed him and told me to try to do anything to hold onto anything right now to give me sanity. He said as hard as it is, I needed to take care of myself and the baby...because there will be decisions to be made coming up that will push me to the edge. And I just have to trust myself. A lot of other things we discussed are private family matters and don't want to write about them fully yet until my sister and I figure things out.

Over the weekend I heard this song on the radio and the words just resonated with me. Mainly because in a few weeks my sister and I will hopefully get some much needed answers on the genetics. The official genetic report on mom is done and about to be released by the BC Cancer Agency. We will find out if the genetic marker was actually hiding in her DNA and what that means for us. But for now, I'm holding on tight to my dream of welcoming my baby boy into this world. I'm holding onto the dream that I will be okay after all this is said and done...and holding onto life, not death.

Broken - Part 2

I woke up early yesterday (Saturday) morning. It was a long night and it all just didn't sit right with me. I knew I needed to get my mom out of there no matter what. I  called to check in with her and asked how she was doing. She said bad. She felt absolutely horrible. She had been throwing up all night and morning and was never given any of her anti-nausea meds. I was so furious - I quickly got ready and headed over to Robbinsdale Rehab.

I got there and rushed directly to mom's room. She was sitting up. I asked her why she wasn't lying down and she said she had chest pain again and couldn't breathe and only sitting seemed to help at all. She'd been sitting waiting for me for several hours and didn't get any sleep the night before. I could tell that her overall condition had worsened just in one night too. She was throwing up, had nosebleeds all night and the breathing was becoming an issue. I went directly to the nurses station and explained what was going on. The nurse indicated that mom looked fine to her when she checked in on her. I got snippy with her and said that I've managed her care for the past 8 months and this was not normal and that I was planning to take her to the ER. Coincidentally while driving over to the rehab facility I had paged the on-call oncologist and explained the problem. They told me to bring her into the ER to be safe. So I had that going for me!

The nurse came back to the room and examined mom. She got her stethoscope and checked mom's breathing and indicated she didn't think mom's lungs were filled with fluid. I told her that I wanted to be sure and that I was taking her into the ER. Her response to me was "Well, I suppose we can't force you to stay." and went onto say "We can manage her care here". I asked her what they gave mom since she's been throwing up...she told me nothing. I told her mom usually takes zofran or ativan for the nausea and they were suppose to have it there. She went to go look and then came back and told me that I was correct and she'd get mom an ativan. I then told her mom's been having nosebleeds which was rather out of the ordinary for her. She said it was caused by the oxygen tank...but then paused and saw that there was no water in the container that was hooked up to the tank. At this point I was livid and becoming quite irate. I held it together and just focused on getting mom out of there and to the ER as soon as I could.

I got mom's things together including her discharge form, into her wheel chair and hooked up her oxygen to her portable tank.  I told her the nurse I would need assistance in helping mom to my car and that I'd pull up to the front entrance. I got to the front of the building but saw no one. I went inside and mom was still in the same spot where I left her. I looked around for help and no one was to be found. I then took it upon myself to get my mom the hell outta there. I slung her bags over my shoulder, pushed her wheelchair with my right hand and had her oxygen tank in my left hand and wheeled it along side of me. The hallways seemed forever and the doors sucked getting through with all that I was carrying. I stepped outside and it was so cold and windy.  As I desperately struggled to get mom in my car, I felt like just bawling. I felt so lonely in that instant...the worse feeling of loneliness I've experienced so far. It felt like mom and I were in this alone...this lonely sad path. I cried inside because it saddened me greatly to know that the one time I did reach out for help, it all just crumbled away.

Where were we going to go now? She's so weak that she needs 24 hour care until she can feel a bit better to come back and live with me. Yet, my hands are tied. I have to keep working. I honestly don't know what will happen once she gets discharged from the hospital...we have no where to go or no one to help us.

P.S. Forgot to mention this too..but mom said the nurse came into her room that night and ate her food when she thought mom was sleeping.

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.