Tuesday, June 26, 2012

2 Weeks into Chemo Round 1

I wish I can say that the last few weeks were easier but they haven't been. There have been a handful of good days, some ok days and quite a few bad days. Most of the bad days involved mom dealing with the various chemo side effects, the pain from the cancer itself and the mental strength to get through this. There have also been some unexpected twists on the genetics front that I prefer not to discuss at this time but will in the near future.

On top of that, a few days ago, my mom's pet rabbit passed away suddenly. My mom loved her little Maya and was very down. Apart of me regrets dragging mom to the Animal Humane Society a few months ago and having her adopt Maya. Ugh...I wish I can take my mom's pain away :-( 

Mom meeting Maya for the first time
The few good days were the days mom went in for iv fluids and some very effective nausea meds to help her through the chemo process. Unfortunately, the regime would only last a day or two. Mandy and Marcus also came up for a few days to visit and that seemed to cheer her up. They even accompanied me for one of mom's iv fluid infusion days. It was nice to have them around. We all sat with mom with our iPads and pulled up pictures, talked and joked around.

I'm a bit sad this week because my Aunt is going to be heading back home to Guyana. She's been a godsend to me throughout these five weeks she's been here. She stayed with mom and took care of so much. She alleviated a lot of stress off of me and has really stepped up when it mattered. I honestly don't know how we will do this without her. She was my angel on earth.

Thursday, June 21, 2012

Chemo: Round 1

The day was finally here, June 14th - mom's first chemo infusion treatment. I slept very little the night before. There were a lot of "what ifs" roaming around my head. The big one was 'What if this chemo didn't work?'. Deep down that scared me to no end. But, I quickly put that thought out of my mind and focused on the day at hand. 

I picked mom up early in the morning. She was zapped of energy and told me that she'd probably just sleep through the infusion. You could tell in her eyes that she was very scared of what was about to happen today. My mom's sister came along with us. She had been staying with mom for several weeks to help take care of her. It felt good to have another motherly figure around.

We began the day with a quick check-in and then we were taken to the infusion center at oncology clinic. To my surprise, the environment felt comforting. All the nurses and staff were so friendly and caring. As mom situated herself in her big comfy recliner we saw that they really try to have this be pleasant experience for the patient and the family. They had pillows, blankets, snacks, beverages, television, books etc. It didn't feel like a place of sadness. Dr. A even dropped by the infusion center to see how mom was doing.

Our chemo nurse for the day, began with a few infusions for pain, nausea and nutrients. This lasted a couple hours. Then we ran straight into the first chemo drug with was an IV push. Mom was given a popsicle to ease the initial nausea of that drug. Then once that was done, they started the second chemo drug via IV drips. 

We were there for about 6 hours but surprisingly it didn't feel that long. Mom had expected to sleep but after the nausea meds kicked in, she was feeling great. She even told the nurse that today was the first day in months where she felt somewhat normal. It made me feel good to see a glimmer the mom I am use to seeing -  energetic, talkative and smiling. She was even eating and drinking and asking for more! 

Wednesday, June 20, 2012

Gearing Up for Chemo

On June 9th, we celebrated my mom's 60th birthday. It was a simple gathering at my home with close family (dogs included). We talked, laughed and truly had a wonderful time. It was also nice to have my dad in town who was visiting from NY.  As a gift to her, I scheduled a portrait shoot with a good friend of mine. Stay tuned for pictures in the near future.

The week of June 11th was a very very busy week. We had several appointments to gear up for mom's first round of chemo which was to begin on Thursday, June 14th. 

Mom first had to undergo a quick surgery called a port placement. It's a little device they insert into your chest so that it's easier to route medications, chemo, IVs etc. I learned that it was the much safer way to go with chemo because over time chemo through the veins can permanently destroy the veins in your arms. Mom was a bit hesitant at first but Dr. Amatruda assured her that she would just feel mild discomfort for the first couple days but in the long run, she would not regret it. Mom said yes.

In our meeting with Dr. A, we went over all the details of mom's chemo regime (drugs, process, side effects etc). I had my crazy uber thick binder and asked him questions along the way. Dr. A even complimented me on my organizational skills and how on top of things I was.

Dr. A's plan was to have mom do three chemo cycles (each cycle taking 21 days) and then do a CT scan to see if the chemo has made a difference. Day 1 of each cycle, she would do the chemo infusion via IV of two out of the three drugs (Epirubicin and Oxaliplatin) and then she'd take the third drug (Xeloda) in pill form for the 21 days.  The next day, we had to do an echo cardiogram to make sure her heart was in tip top shape for the chemo. Apparently it was a requirement of using one of the drugs because it is very powerful and can be a strain on the heart. We also had an appointment with the genetics counselor to talk about the family history of the cancer.

Looking back, I don't know how I mentally, physically and emotionally made it through that week. Each day was long and very trying. I went on very little sleep and apart from that, it was all sinking in. All this had just become quite real. The word "chemo" kept echoing through my head over and over. You hear that word and there's nothing but bad associations with it. I became engrossed at reading all the material I was given by the doctors and doing my own research on all the side effects and the best ways to counter them. I needed to prepare myself. I couldn't miss anything..even the smallest of details. I was fighting for my mom's life; I couldn't let her down.

Friday, June 15, 2012


You know full as well as I do the value of sisters' affections to each other; there is nothing like it in this world. ~ Charlotte Bronte

In late May two of my mom's sisters came to visit her. It warmed my heart to see them all together. Smiling, laughing, gossiping, and sometimes even bickering about silliness. 

The bond between sisters is unlike no other. I don't know what I would do without mine. We call each other frequently even though we're miles apart and when we see each other in person, it's as if no time has passed. 

Lately, Mandy and I have had a lot of heart to heart talks. As you can imagine, dealing with this whole situation has weighed heavily on us. We are trying hard to be strong and get through each and every day. We don't want to lose mom. She's our world.  It scares us to think she might possibly not be here. But, we try not to think about that too much. We focus on the present day and make the best memories we can. We can't control what is about to happen. We just have to enjoy now and stick together.

Trips to Mayo Clinic

The last week of May, we voyaged to Rochester, MN to get a 2nd opinion at Mayo Clinic.

The first trip, we had a surgeon's consult with Dr. D to find out if surgery was off the table for sure. I had come to know of Dr. D through the great people at No Stomach for Cancer. He is one of the top surgeons when it comes to doing total gastrectomies and had experience in dealing with HDGC. He was the guy to go to in this area of the country. He confirmed that surgery before any sort of chemo would not be a good decision. Since the cancer had spread to the peritoneum, we had to deal with that first. He suggested pre-op chemo and if mom was responsive to that, then we'd look into the surgery option. It did make me feel a bit at ease when said that he's had quite a few patients lately who responded quite well to pre-op chemo and were able to do surgery.

The second trip, we met with Mayo Oncologist, Dr. D.S.  She was great and offered a lot of information. She made us feel at ease with the whole chemo process and provided us several options for the type of chemo. Mom had two options: EOX or Folfox. EOX was the most cutting edge and newest technology in the chemo world for this type of cancer. Folfox was equally as good but just an older regime. We asked her opinion on one over the other. She and along with some other doctors all said that EOX would be the best option for mom because it's been successful and it's the latest chemo out there. She said that chemo has come a long way in just the last couple years and they'd do everything in their power to give mom the best chances to survive this even though the chances at Stage 4 were slim.  But, I look at it this way....there's a chance! It was a rare genetic condition that got us here to begin with. 100 families in the world have with what we have. I had to hold onto that and perhaps that she will be in that small percentage that kicks the shit of out this.

They said that whichever treatment option we wanted, we could do treatment locally. Dr. D.S said she'd keep in contact with Dr. A to see how mom was doing. Driving home on that sunny day, it felt good to finally have some treatment options at hand. It seemed like it took us forever to get to this point. I had felt helpless up to this point of mom getting sicker and sicker each day and there was nothing I could do about it. We left Mayo with hope.

Sunday, June 10, 2012

A Cheerful Visit

After several weeks of go go go, mom was feeling up for some visitors. Some of her co-workers came over along with some close friends and family. It was a fun afternoon and it really cheered my mom up when she saw all the support and love.

Tuesday, June 5, 2012

Surgeon's Consult at Abbott

We had gotten the official diagnosis, now it was time to meet with a surgeon to discuss treatment. Dr. A had referred us to Abbott Northwestern. The day was emotional to say the least. After reviewing the scans from earlier in the week, we were told that the surgery option was off the table. The cancer is the stomach seemed to be spreading to inoperable regions in the lower abdominal. Because of this, chemo was the only option at this point to first get rid of the cancer in that region in hopes for a total gastrectomy later on. Hearing this news, my stomach felt like a bottomless pit. The cancer was spreading...this was not good!

The Dr. suggested a procedure called a laparoscopy on May 22nd to see the extent of the spreading which was conducted early the next week. After the procedure, the Dr. pulled me aside while mom was in recovery to tell me that the cancer was confirmed to be spreading.

It was a long day...I think we spent close to eight hours from check-in to discharge at Abbott. The one positive thing that day was my sister, and her husband drove up to Minnesota from Missouri. My mom was happy that night. They got settled in and we ordered some pad thai. We made mom relax and we all just talked, laughed and looked at old pictures that night. It felt comforting that my sister was here and we were all together.

A Slew of Tests & The Diagnosis

The week of May 14th was non-stop craziness.

In just a few days, we took the Pet scan, CT scan, and the 2nd endoscopy.  We also scheduled a surgeon's consult appointment at Abbott Northwestern to discuss treatment options for that Friday. Even though, we had not officially gotten the diagnosis yet, they wanted to get things moving and find out as much as possible for our surgeon's visit at the end of the week.

On May 16th, in the afternoon, I got the call from the GI who confirmed that the biopsies from the 2nd endoscopy were cancerous and looked advanced. I wish I could say I was surprised and shocked...but I wasn't. Deep down, I knew this was coming. I wish I could say, I cried...but I didn't. I had cried so much up to this point, I just couldn't anymore. All that ran through my head was...the next step. How do we battle this? And not just battle this...how do we battle this differently from Rajen and Sandra so the outcome would be different.