Monday, December 31, 2012

The Scariest Moments

Within a few hours of writing Friday's blog, we had the worse scare thus far. Friday night mom began feeling very breathless again and was having panic attacks. We eventually got her to settle down and kept a close eye on her throughout the night. I think I feel asleep around midnight. Then at 2 a.m. Saturday morning, things quickly changed for the worse. The breathing was acting up again but this time it was coupled with really bad chest pain. She couldn't physically get up and walk either. We decided she need to be rushed to the ER asap. We were going to call ambulance but decided to just drive to the Unity Hospital since they are quite familiar with her medical situation and they could reach Dr. A or his team pretty easily. We scrambled to get her things packed and her ready for the trip to the ER. My brother-in-law physically carried her up the stairs and into my car.  In the midst of it all, I felt so sick that I just threw up all my food from the night before. But, I got myself together and focused on what I needed to do to get through this.

We quickly drove to the ER. It was so eerie...driving in the wee hours of the morning and no one around. It felt like the Twilight zone. We arrived at the hospital and got her admitted right away. They did all the necessary preliminary tests and we filled them in on what's been going on lately. She was put on oxygen and given morphine to control the pain for immediate relief. She was then assigned to her own room in the cancer ward after a few hours in the ER. They did a chest x-ray but it showed that the amount of fluid in her chest was just a small amount. They were puzzled as to what was going on.

Later in the day, she started having breathing issues again (with oxygen on) and they rushed her to get a thora to get whatever fluid drained. To their surprise, they drained 675 cc's from the left side of the lung. For some reason, her x-ray was not showing this. Later in the afternoon, Dr. K who's an oncologist and works with Dr. A, came on duty. He thought it was all rather perplexing and ordered a rush ct scan. He said that the amount of pain mom was feeling was still there and she should have started to feel a lot better after draining 675 cc's of fluid from the lungs. Within an hour or so, we got the ct results back and learned that mom had multiple blood clots in her chest. She also had one in her left foot which is why she felt weak in her legs. They started her on a fast acting blood thinner via her iv to get things under control.

On Sunday, we learned a bit more. Not only did she have multiple clots but they were pretty massive and began to branch off so surgery was out of the question. Dr. K said that it was very good that they caught this when they did. It all could have end in a blink of an eye.He also said she's still not out of the woods yet. The next few days are crucial. They are doing what they can but at the same time, the condition is very very serious. He said that she can just stop breathing or her heart can just stop beating.

She's being given another blood thinner today though I am not sure when that will be. She's scheduled for an IPC (indwelling plueral catheter) surgical procedure later this afternoon. This will at least help the fluid buildup so they don't have to constantly poke holes in her lungs.

So,  that's where we're at. I will update how the procedure goes later today. Thank you for all your kind words and those who've reached out to me and our family. I hope everyone understands that I can't update each and everyone individually via the phone. I haven't been home a lot, haven't had much sleep and just trying to get through these days.

Right now, we have a lot going on and I have to be there for mom.

Friday, December 28, 2012

Staying Strong

The last several days have been challenging for all of us. I won't sugarcoat anything -- it was pretty bad!

A few days into taking the c-met drug (Crizotinib), mom has been experiencing very bad nausea and has been vomiting constantly. As a result of that, she hasn't been able to keep any food or liquids down and her motivation to take pills to ease symptoms have diminished due to the fact she's feeling pretty rotten. Even though she was home for Christmas, she had to spend most of the day in bed. But, we made the most of our holiday together and did truly have a wonderful Christmas. She was quite happy with her new iPad she got from all of us and the Rita Collection-esque cover for it too. :-)


I'm also happy that she's now living with me now and that's going to alleviate a lot of my stress. The last seven months have been crazy running around town and managing two households and all that encompasses that.

On Wednesday, we had a follow-up with Dr. A. I was not there and my husband, sis and her husband went along with her. After hearing about what mom was going through, he suggested a very short break from crizotinib to get her nausea under control and changed her medication around a bit to assist in easing the symptoms. But, within a day of being off the pill, mom began experiencing piercing chest pain and couldn't breathe again. Obviously, the crizotinib was doing something! She was adamant in wanting to just quit and just let things be. I can't blame her fully as her body is going through quite a bit lately. But, I was also quite frustrated that she was willing to give up just a few days after starting to take the pill. We all worked so so hard to get to this point and she was truly given a gift to even have this drug. It's one thing if the pill had no impact and her coming to terms with that but it's another thing to blow an opportunity that can be life saving.

It took a toll on the four of us and we talked a lot. We stepped up and worked out a solution. My sis and husband had a heart to heart talk with her while I was at work yesterday. They explained that all this was bigger than her, which it really was. She has been given a unique opportunity to potentially help others who have this disease down the road and help others now by what we're doing. All eyes were on her. We told her that it was essentially her choice but once you turn your back on treatment and head to hospice, there's no turning back. She decided to keep fighting!

My own two cents is... I know the chances are slim and even though we've lost my two cousins from this -- no two paths are the same. Just because, it's the same disease with similar symptoms -- it does not define your outcome.


Monday, December 24, 2012

Discharged and Days 1-4 of Xalkori


Last Friday, mom was discharged from the hospital. They got all the infections under control, her heart exam came back clear. The thora on the right side of her lungs made a huge difference in her ability to breathe. She was taken off of the oxygen and had to do several walking tests and she passed with flying colors. She was given an inhaler just in case she needs it from time to time.

We also started our very first dosage of crizotinib/xalkori. She has to take 1 pill in the morning and 1 pill in at night. The challenge is going to be to keep it down without her throwing up. In the past few days, she's had severe nausea and vomiting because of the new treatment. We're trying to work out the bugs and optimize the pill staying in her for as long as possible until it's released into her bloodstream. We were given a whole new variety of meds to manage side effects from this new treatment too. I'm still getting use to it all. It's like relearning everything and I have to get a feel for things.

The one good thing is NO CHEMO anymore. We are all happy she's just done with that. From the recent scan results, it's evident that cancer was smartening up and just couldn't keep things at bay anymore. So, onto xalkori. We're all very optimistic of this new revolutionary treatment. I've search far and wide for case studies or stories, and I have yet to find this drug being used on a gastric patient. So, this is a leap of faith!

I'm so thankful for the amazing team at the oncology clinic and hospital these past few days. I can't say it enough. They are amazing. They were on top of things from the minute I called them on Wednesday. Dr. A especially has been the leader in all this. Back in May, we were told she had less than six months to live (if that)...but we keep pushing on. I know the chances are slim but I still have this feeling like she can be the one to beat this in our family. We know so much more than we did four years ago and there's been quite a few developments in the treatment realm. I think of my cousins often and I know they'd be proud of what we've been able to accomplish so far.

So for now, I write this on Christmas Eve. We are going to be celebrating the best Christmas ever with mom.

Thursday, December 20, 2012

Day 2

I arrived at the hospital bright and early today after having only a few hours of sleep the night before.  I needed to be with mom today as she goes through all this. Her condition is still not as stable as I'd like but she does seem more comfortable today compared to yesterday. She's still unable to breathe on her own but at least her pain level in her chest has lessened.

I spoke with the attending physician this morning and he thinks there's some other factor that is affecting the rapid fluid build-up. He ordered a few more tests to be done. Earlier this afternoon, mom had a thoracentesis for her right side of her lung and they withdrew 600 cc's of fluid. It's crazy how much fluid had piled up because she had that side drained just over two weeks ago (400 cc's).  She was given a drug called lasix which is used to treat fluid retention.  Hopefully together they can get the fluid under control.

She also had an echocardiogram to make sure her heart was working the way it should be. She had one back in June prior to starting the EOX chemo regime so they are going to compare the two to see if anything is out of the ordinary. She was given another med to keep her blood pressure and heart working property as a precaution.

3:15 PM - Dr. A stepped in for a few minutes to visit mom. He received the ct scan results from yesterday and it shows that there are some additional cancer spots spreading to her lungs. We talked and the plan of attack is to go ahead and start the crizotinib/xalkori tomorrow. I am so relieved that we got his approved ahead of time because ironically it's a lung cancer drug. We also chatted a bit about options and worse case scenarios but I am choosing not to discuss that right now because it's a private family matter. Mom, Mandy & I need to make those decisions.

I got a bit teary-eyed when Dr. A left. He held my mom's hand and asked her all about Guyana. He said one day he promises he'd visit Guyana for her.  He also told mom that she's very lucky to have me as her daughter because I've done a tremendous job at dealing with all this. He said I've inspired him and his team and they learned a lot from me and we wouldn't be where we were if it weren't for me.

7:00 PM - Dr. A and I went over all of mom's current medications and possible interactions with crizotinib. So, we're changing and tweaking things to make the transition as easy as it can be.

As shitty as the situation seems to be, I still have hope.  Mom has been given a unique opportunity here with these c-met inhibitors. I forgot to mention in the blog with everything going on, but she also got approved for the 2nd c-met FDA approved inhibitor out there, Cabozantinib. And we didn't have to file an appeal on this one - yay!

I strongly believe that mom has fight in her yet. It's been a rough and bumpy road but she's digging deep and we're fighting.

Just a paralegal

Ugh...I really don't know where to begin. Yesterday I went over to check on mom over my lunch break like I typically do. She's been having some breathing issues for the past couple days and I was working hard at getting her hemoglobin back up from last week (8.4).  I got over there and her breathing did not sound right at all. She was gasping for air even at rest and wheezing. She also told me that she was urinating pink. This set off a red alert and I immediately called the oncology clinic. They advised me to rush mom to the ER right away. They said they'd call over there and let them know we're coming. Our drive to the ER was a scary one. It felt like I was extremely close to losing her and she'd take her last breathe right in front of me. It wasn't suppose to be like this.

We arrived at the ER and a slew of medical staff began working on her. It was like an episode out of ER. They doctor on call and nurse kept asking questions and I was able to fill them in thoroughly on background, symptoms, blood counts, chemo and medications.  I told the nurse all about mom's prognosis and how I have been combating things. She asked if I was a professional personal care assistant. I was kind of in a daze and I uttered, "No, I'm just a paralegal".

While in the ER, they ran a slew of tests (chest xray, EKG, bloodwork, cat scan and urinalysis). The attending physician said that preliminary tests showed that she had a few infections (urinary, bladder and respiratory). But all of which were going to be treated with intensive antibiotics. They also said that she could have pneumonia since there was more fluid in her lungs. She had to be hooked up to an oxygen tank cause she couldn't breathe on her own at all.  Even while on the tank, there were still moments she was struggling for air. It was very scary.

The nurse said we'd be spending the night there cause more tests were going to be run the following day.  They were going to be monitoring her condition throughout the night. Also,  since mom had her thoracentesis on Friday, it didn't make sense that the fluid would be back so quickly.

As she filled us in on what'll happen next, she said to me, "Honey, you're more than just a paralegal". Her words stuck with me.


Wednesday, December 12, 2012

A Momentus Day

Yesterday was a momentus day!!!!!!!!!!!!!!!!!!!!! For the first time since May 4th, I feel like I made my mom proud.

On Dec. 11th, my phone rang. It was Dr. A's office. I immediately knew that it was the appeal decision. Before I even answered the phone, I had this wave of calmness all over my body. I knew deep down it would be good news. And it was! Dr A's nurse happily told me the great news - we were approved for off-label usage for crizotinib (xalkori), the lung cancer drug we've been trying so hard for. Dr. A and I went head to head with the insurance company for weeks. We spent hours pouring into the c-met research, sending correspondence back and forth, getting even more in-depth research when we were initially denied and then worked hard to appeal the decision.  I am elated that all the work we did paid off.  The next step is working out all of the details. It's been officially approved but now it has to be dispensed which in itself is a process. We have to go through a specialty pharmacy, submit co-pay and get all the necessary paperwork filled out.

Now I hope the drug works...it is the first FDA approved c-met inhibitor drug making it weaker than what's being tested in current c-met trials.

I'm not taking a backseat either just because this was approved. We're working just as hard to get another FDA approved drug called cabozantinib approved as well. This drug is more powerful that crizotinib. Gotta have options.

In addition, I've also been pursuing another treatment option for mom down the road. It's on the back burner for now but we're getting the ball rolling on it. She's a candidate for a small pilot program at Mayo Clinic - Center of Individualized Medicine. More to come on this - we are voyaging down there next Wednesday to meet with the program director and surgeon.


Thursday, December 6, 2012

December Follow-Up with Dr. A

Yesterday, we had an follow-up with Dr. A. He gave us a thorough summary of mom's CT scan results from last week. The good news is that the cancer in the stomach only had a small progression but for the most part, it's still stable. The not-so-good news is that the cancer appears to be spreading a little in the lining of the lung. This is what caused the fluid in mom's lungs the last couple of weeks. He indicated it wasn't too bad at this point and we'd combat the fluid by doing regular thoracentesis procedures every few weeks. We'd alternate which side of the lung since one of the main concerns of this procedure is the lung can collapse.

Mom decided to go ahead with chemo yesterday while she waits on one of our c-met drugs to be approved via off-label usage. This will be chemo 9 - session 1. Her vitals all looked pretty good considering what she's been through the last few weeks. I'm so proud of her for fighting. Most of the time she's completely miserable from the chemo but she digs deeps to fight another day. I'm am fortunate to walk beside her as we go through this together.

Greetings Cabozantinib!


Got some promising news on the c-met drug front. A new drug called cabozantinib (Cometriq) was just approved by the FDA on November 29th, 2012. This is the second drug that's FDA approved that's a c-met protein inhibitor. Cabozantinib is going to now be prescribed as treatment for medullary thyroid cancer (MTC). The drug company, Exelis, is currently studying cabozantinib as treatment for prostate cancer too. I've been doing some research and there's strong opinion that once it is FDA approved for prostate cancer, that oncologists will be able to prescribe this for any cancers with c-met expression in tumors. This is something that will really benefit a lot of patients out there.

In the meantime, I've already bugged Dr. A about getting the ball rolling on seeing how we can get off-label usage for cabozantinib. So, it's in the works along with crizotinib (the lung cancer c-met inhibitor) which we've filed an appeal to the insurance company.  We're awaiting the appeal decision.

If both of these pathways don't pan out, I'll be heading to Detroit with mom somehow. Not sure how yet, but that'll be our last option. Not giving up.


Monday, December 3, 2012

A Letter of Life & Death

Even with all the craziness going on last week, I have been working hard and really pushing towards getting some form of c-met inhibiting drug.

If you recall from a previous blog a couple weeks ago, Mayo Clinic is currently conducting a c-met trial. The downside is that they are only admitting kidney cancer patients. I've been working closely with a Mayo oncologist and a few other doctors down there and they've been trying to convince the drug company sponsoring the trial to include mom into the trial. They suggested that I write a letter telling our story.

So for the past week, I've spent a lot of time getting my thoughts, feelings and research onto paper. I cited research, gave a thorough background of mom's medical background and explained how it would be mutually beneficial have a gastric patient in their trial with their new c-met drug. I also talked about the genetics and how it can help others in my family too.

Unfortunately, it wasn't enough and they denied the request Friday. I was beyond devastated. When I saw that email come through, my heart just sank because I felt like I failed mom. Initially, I was also quite upset at the big drug company for denying her but I am sure they had their reasons. The drug they are testing is very important and it can help a lot of people in the future.  I hope it's successful.

But, for now...the c-met Mayo Clinic trial option is off of the table.

Update (Xalkori/Crizotinib): We were also denied by the insurance company for the xalkori/crizotinib, the FDA approved c-met/alk inhibitor drug for lung cancer. Dr. A is going above and beyond with this and appealing the decision. He's written a very eloquent letter trying to convince the insurance company to cover this drug for mom because out of pocket costs are insane ($10,000 per month).

Thursday, November 29, 2012

Mom's First Thoracentesis

Say that three times fast!

Today's thoracentesis went smoothly. The procedure itself only lasted about 30 minutes but there was a lot of pre-op and post-op things they did. We arrived approximate at 9:30 a.m. and had our initial check-in. Mom was given strict instructions not to eat of drink anything that morning. She was also suppose to be off her blood thinner for a day prior.

We were then taken to a separate private room which would be her recovery room once the procedure was done. They started off by getting her all situated, taking vitals, and doing blood work  They are mapped out the area where they would have to make the incision in her back to get to the chest cavity to drain the fluid. We then waited on them to come and get her to do a chest x-ray to see how much fluid had accumulated. Once that was done, they took her to the operation room. She said that they numbed the entire area of her back. Then next went in with a needed attached to a vacuum-like bag and began extracting the fluid. She said she felt a bit of discomfort at the instant they inserted the needle but it wasn't too bad. Throughout the draining, she just felt some moderate pressure in her chest. Once that was done, she was brought back to the recovery room where I was happily waiting for her. It was such an amazing site to actually see her smile. I asked her how it went and she said she felt normal and was so happy to breathe normally. The post-op nurse said there took out about 400 ml of fluid and it was sent to the lab for testing. I am hoping that the fluid is not cancer but if it is, I am ready to battle that head on too. I am not going to lose hope. The fact that she was able to breathe normally today was a little victory today and I am choosing to hold onto that.

Wednesday, November 28, 2012

Ups and Downs


The last week has been filled with ups and downs. Last week, my sister and husband were in town for Thanksgiving and it was amazing. We were all together and mom was feeling pretty good. I remember thinking that day as we all hung out watching football (after eating way too much), that I wish that I could freeze that moment of happiness. One of my best friends for over 20 years also visited for the weekend. It was a breathe of fresh air and a positive diversion that my heart needed. My mom was so happy to see her.


It's crazy how just a few days the human spirit can be crushed...For the past few days, mom's health has really been deteriorating. The main concern is she's been having some major breathing issues. I had thought that it was because her hemoglobin was low but I wasn't sure.

We had our CT scan early this morning and while she was getting that taken care of, I called the oncology clinic to fill them in on what's been going on. They were able to squeeze us in for an appt. with the nurse practitioner right after we had the scan. We took care of getting vitals and then met with the NP to figure out why mom's been feeling the way she was. Her blood results had showed that her hemoglobin, though still low (8.6), was actually a couple of a tenths better than last week. The NP called over to the hospital to see if they could tell anything from the scan. She was concerned that the blood clot had returned. Mom was hooked up to an oxygen tank to be a bit more confortable. The NP talked with the radiologist who said that the issue was not a clot but a moderate amount of fluid buildup in the lungs that's caused by the cancer. He also said that the cancer in the chest region looked more prominent..sigh.

So, tomorrow we have a thoracentesis scheduled to drain the fluid from mom's chest. Hoping the procedure goes smoothly.


Wednesday, November 14, 2012

Honing In

Today, I felt, was a very productive day. We met with Dr. A for a follow-up to discuss options going forward. We've honed in tightly on three viable options on the c-met inhibitor and I feel really good about each of them. Over the last few weeks I've been emailing Dr. A and Mayo Clinic and we've managed to subtract out a few trials from our initial list and even added added a new option today.

Option 1: Clinical Trial in Detroit
This trial seems very promising but the downside is it involves a lot of travel (1-2 times a week for the first 6 weeks). We're still trying to figure out how to do this.

Option 2: Xalkori
Xalkori is an FDA approved drug that targets tumors with C-MET and/or ALK proteins. Right now, it's only approved for lung cancer unfortunately. But it's on the market and I think it will greatly help mom since she has a high expression of the c-met protein in her tumors. The next few days, Dr. A and I are teaming up to gather as much research as we can to make a case for it with gastric cancer so mom can be prescribed the drug. He will be drafting a letter of medical necessity. Cross your fingers!

Option 3: Clinical Trial at Mayo Clinic
This is completely new and I don't have all the details yet. All I know is there's a new c-met trial at Mayo but are only letting in patients with kidney cancer. Dr. D at Mayo will see what she can do to admit mom into this trial.

So, we've made some solid progress today. It's not as fast as I'd like but it is what it is. I'm just thankful to have options at hand and the cancer is stable. Not a lot of people even get that. We went ahead with chemo today. It's now officially round 8, session 1. Mom's count was also good too which I was happy about. Her WBC was 4.7 and HGB was 9.2. A lot better than last week when they were 1.7 and 8.3, respectively.

I can't say this enough, but I am so thankful for the medical team ( I call them my rock star team) that we are working with. It's so important to have that peace of mind that they have your best interests at heart and also listen to you when you bring ideas to the table. I often wonder if Dr. A gets tired of me for pushing so much but today he shook my hand and thanked me profusely for all that I am doing. He's even mentioned me in the medical summary letters he drafts after each meeting and has complimented me as a very thoughtful and useful source. It feels good to know that what I am doing is making a difference in their eyes.

Friday, November 9, 2012

The Pioneer & The Discoverer

If you've followed my cousin's Sandra's blog, you will see that she coined her brother, Rajen as 'The Pioneer' in our family story before she passed away earlier this year. I find the title very fitting. He was the first one in the family to enter this unchartered territory of hereditary diffuse gastric cancer. During his battle with cancer, we had no idea of what the years to come after his death would bring. But he did tell us his story and all the symptoms he experienced. He taught us to observe and prepared us for what was to come.

It made me think of what Sandra's role is in all this and I think she was 'The Discoverer'. Her thirst for knowledge was a sight to see. She was perhaps the most brilliant person I've ever known and her being a scientist she yearned to find answers. She was very proactive and, because of her actions, we discovered the genetics behind the cancer.

I am so proud to be related to them and think about them often. I feel like they'd both motivated me in such a profound way. They were more than just cousins to me, they were my big brother and big sister. Their battles motivate me to follow their lead in searching for more answers. Answers that will eventually kick cancer's ass.

I wonder what my role will be in the years to come...

Thursday, November 8, 2012

Wacky Wednesday

Yesterday, I spent pretty much the whole day with mom at the clinic and hospital. She was carrying a low-grade fever for 3-4 days with occasional spikes here and there of 101. I was watching her closely, and trying really hard to break it with Tylenol but it kept lingering. It also concerned me that she had a bad cough which made her very breathless. We were scheduled to go in for our weekly labs later in the afternoon but my gut told me to call the clinic and tell them what's been happening.

I spoke with Dr. A's nurse who told me that we should come in sooner to have mom meet with the nurse practitioner to see what's going on. They said it's possible that mom could have an infection which I assumed was the case by the persistent fever. I pretty much dropped everything I was doing at work and went to take her to the clinic. Once we arrived and met with the NP, she examined mom's chest and heard mom's left side of her lung was a bit quieter. The NP said she'd like us to do a chest x-ray because it might be early forms of pneumonia and if it was it would mean mom would have to get admitted in the hospital.

But before that, we were whisked away to one of those sterile isolation rooms that I've only seen in the movies. Since mom's counts were borderline low (WBC 1.7), they did not want to risk her catching an infection. She was given a slew of medications via infusions to control her fever, nausea, dehydration and some potent anti-biotics in case that there was an infection. It took about three hours. After that, she started to feel a bit better. We then rushed over to the hospital to make our chest xray appt.  By the time, we got home, I noticed mom was feeling the worlds better. Her once consistent fever at 100.0 was now back to 98s. Yay meds! Now all I hoped for was her chest xray results to be ok.

Update 11/8/12 : Got a call from the NP today and mom's chest xray is ok. She said there doesn't seem to be a serious concern. Mom's chest has some liquid in it and we'd monitor it for now.

It's strange...as all this was unfolding yesterday I really wasn't phased at all. I remember months ago when things on the fly would happen, I'd kinda freak out and get anxiety. But I've noticed recently, I just deal with it. The good, the bad..all of it.  It doesn't affect me like it once did.  When I get bad news, though disappointing, I don't get so emotional vested anymore. I just take the next steps I need to.

Tuesday, November 6, 2012

Six Months


Sunday (November 4th) was the six month mark of mom being diagnosed. It's hard to believe it's already been six months because it just blew by. A friend told me awhile ago that I pretty much had a crash course in cancer with all that has happened. I couldn't agree more. Six months ago, I had no idea about port placements, laparoscopies, c-met inhibitors, EOX regime, irinotecan, docetaxel, lovenox, ativan, fentayl patches, aranesp, zofran, neulasta, TPN, HER2, emend, oncogenes, managing WBC AND HGB levels....etc.

I am trying to figure out what else I could have done better. Would I have done anything differently? What can I do better going forward?  The answer...I just don't know, in fact I have no clue. Up to this point, I've pretty much equipped myself with as much knowledge as I possibly can and always gone with my gut. I took one day at a time and never got too ahead of what I was dealing with. It's gotten me this far and overall I think I've managed to get by ok.

I've gathered a few tips for new caregivers. Some are things I just find myself doing..some are really no-brainers. I know there are lots more things too but these are the most common things.

  • Always have at least half a tank of gas in your car at all times for the many appointments you will be going to and sometimes emergency trips you need to take
  • Have a hospital overnight bag with personal items in case the patient needs to get admitted asap (it saves you a trip and lets you not leave them alone in the hospital)
  • Have fully charged phone AND take phone charger with you
  • Have a stash of quarters for metered-parking
  • Bring entertainment for you for longer appointments, infusions etc. (I was grateful for my iPad)
  • Always have kleenex, barf bags, bottled water, blanket, hand sanitizer on hand or in your car
  • Keep a well organized binder of all medical info. (appt. schedule, scan results, pathology, business cards, insurance, legal docs etc.)
  • Have Power of Attorney and Health Care Directive in place
  • Have relevant phone numbers programmed in your phone (doctor, pharmacy, nurse, home care vendor etc)
  • Keep broths, soups, and liquid energy drinks on hand (Ensure, Scandishakes, coconut water etc.) and always be on the lookout for higher calorie options
  • Juice juice juice! If the patient tolerates it try to juice fruits and veggies
  • Invest in a good digital thermometer and have Tylenol on hand to track and manage fevers.

Monday, November 5, 2012

NSFC Walk 2012



On Saturday, November 3rd I participated in a global walk sponsored by No Stomach for Cancer to raise awareness for stomach cancer. The walk was aimed at unifying all of our shared experiences and our passion for the stomach cancer cause. And so all around the country and the world, we gathered into small walking groups to support each other, give each other comfort, and inspire others.  I walked for my cousins who I've lost and for my mom who continues to fight.

I also learned of another family here in Minnesota who has HDGC. It was a somewhat calming feeling knowing that the people walking beside you shared similar experiences. You weren't alone. It was truly a special day.



Thursday, October 25, 2012

Always Have Hope

CT scan results from last week are in. We met with Dr. A yesterday and went over a lot of information. First off, mom's cancer is stable..for now. The chemo cocktail of irinotecan and docetaxol is doing a good job at holding the cancer at bay. The scan also showed that the blood clot in her chest has vanished. Thank you lovenox! We're still going to continue with the lovenox on a reduced dosage however, since this chemo has a tendency to cause blood clots along with the aranesp shot she's been on.

So what now? We decided to go ahead with one more round of chemo yesterday to buy time until we figure out the next course of action. We've narrowed down four paths all of which will involve taking a c-met inhibitor drug. So we're buying time with this round of chemo until we can figure out the pros and cons for each drug. Some things that we seriously have to take into consideration are :1) mom's physical state and how it will hold up to the travel commitment for each trial 2) costs 3) my time commitment and current responsibilities and 4) out of state TPN accommodations. These are just factors for us. There's also a lot on the side of the clinic/ pharmaceutical company hosting each trial which can include: evaluation for trial, weekly lab tests, various exams, all the exclusion criteria, patient history etc.  So there's a ton going on right now and I'm honing in on my research and working closely with Dr. A to make the right decision that will be good for us.

Tuesday, October 16, 2012

A Rotten Few Days

The title speaks for itself. This weekend and last few days have just been rotten. Chemo 6 - Session 2 is really really taking a toll on mom. I've had to deal with a multitude of side effects and keeping a very watchful eye. Spiking fevers, very very low energy levels, fluid retention in legs, chest pain, and intense bone pain. For the most part, I've been able to pinpoint where each side effect is from and managing that with pain meds, hydration, tpn and tips from fellow caregivers. The one thing that concerns me is the chest pain. I am thinking the blood clot is reappearing. She's on the blood thinner which is good and I am thankful that we have a scan later this week to see what's going on in the chest region.


Friday, October 12, 2012

Chemo Round 6 - Session 2

Yesterday mom had her second session of round six of chemo (4th round of the new chemo). Next week is her break week and we will also do a CT scan to see the status of the cancer.

I've been consumed with CMET research. I eat, drink and sleep it. Yes, I even dream about it. I've been reading through the handful of clinical trials and learning the different types of CMET inhibitors (the drugs being created to attack the cmet protein). I showed mom one of the trials to have her read through and she spent a minute looking at it and responded, "This is boring...and complicated. How do you understand this stuff". Her response made me chuckle cause I actually find this stuff very interesting.

I feel like I have a firm grasp on everything I've researched thus far but it concerns me that mom will not be up for travel and expenses might become an issue too. The closest trial to us is in Michigan and it will involve weekly visits to that facility for the first 6 weeks or so. Then after that, you visit once a month. Right now, I have no idea of how I am going to do this. What I do know, is that I will need help. My mom's life is at stake and I must find a way to make this work.

Tuesday, October 9, 2012

A Sliver of Hope

Last Thursday, mom started her sixth round of chemo. She's fighting with everything she has and I am so proud of her. A lot of people are probably wondering why she continued with the chemo even though her prognosis was very bad. Well, there's something I haven't told you. Mom is going to be a grandma! Three months ago, I found out that I was pregnant and told mom the news immediately. I remember the first time seeing her after I told her the news. She was all dressed up with make-up and all for her chemo treatment which was that day. She said to me, "Today I am happy. I am going to be a grandma. I am gonna fight." Since then, it's what that keeps her going. She's told me that she knows she doesn't have much time left but wishes with all her heart that she can see the day her grandchild is born. Since then we've both been doing whatever it takes to make that day happen.

In some other surprising but awesome news, mom was tested positive for the CMET oncogene. We were told that the chances of testing positive for the protein were very low of individuals being screened for it. But, after researching and asking some wonderful people who knew about this, I was finding that a person had a higher likelihood of testing positive if the tumor was of diffuse type and the person was minority/ from a diverse population. Mom fit both criteria and it's what kept me pushing on to get her tested for this protein.

So what does this all mean? Well, since mom is positive, she can enter clinical trials that specifically target the protein in the tumors. Right now, the drugs are only available via clinical trials though and finding the right trial will be a long process from what I've been told.  But, we have a direction to move and options at hand.

A few months back when we ventured to Mayo Clinic, mom was tested for HER2, another oncogene. HER2 has already been through clinical trials and the treatment is readily available if patients test positive. Unfortunately, mom was negative back then. It's really fascinating science and I think that years from now, it will do wonders for cancer patients. Instead of using poison (chemo) and hoping that perhaps that specific combination works for your body,  you can get approved drugs that specifically target and kill that tumor protein. I know it's probably nerdy to be excited about this, but I am. I feel like this is the key to potentially saving my mom. And even myself, my sister and my future little one..if this disease targets us.

Tuesday, October 2, 2012

Turning Point

The past week mom's had a pretty nasty cold. As you know, getting a cold with a fever while your white blood counts are low can be detrimental to a chemo patient. I've been doing my best to stay on top of it with the help of the doctors. Mom had an ongoing low-grade fever for several days last week and into the weekend. We were able to break it a few times but it kept coming back. Luckily it was not higher than 100.5 (the magic number the clinic tells you if you have to be rushed to the ER if it goes higher).

The cold-like symptoms are finally subsiding thankfully. But, I am still very concerned about mom's spirits right now. She's very depressed, weak and lethargic. I can tell she's just frustrated at not being able to do anything and she's just thinks deep down she doesn't have much time left. She's told me she feels like the cancer is just eating away at her body and all the treatment is not doing anything so why bother. She often asks me the hardest questions: "Why is this happening to me; I am a good person?", "How much time do I have left", "What have I done in life to suffer like this?" etc. I just let her speak her mind. There are no answers that I can really give her. I am not going to lie and tell her things will be ok. It's not me. I just hope as we start the sixth round of chemo this week, that she still has a bit of fight in her.

Deep down I am planning how I am going to do this if she slips further and further. My mind is always multi-tasking these days it seems. Up to this point, I've only done research on hospices but I am thinking that within the next few weeks, I need to actually make an appointment and visit these facilities. I can't keep avoiding what I am afraid of.  From a few people I've talked to, they are not as scary as you think and are quite welcoming. Mom and I both know that I am exhausted and she said that I will need help here pretty soon. So that's where we're at.

Tuesday, September 25, 2012

Chemo Round 5 - Session 2

Mom had her second session of chemo round 5 last week Wednesday. I wish I can say the last week was easy but it wasn't. She's been in really rough shape. I haven't seen her this bad for quite some time. She's so fatigued to the point anytime she stands up, she feels like she's going to collapse and pass out. She's also not been able to eat for the past few days and she said that she's been feeling stomach pains again. She hadn't felt that for awhile now. I can see that she's just tired of all this and is really questioning to keep on fighting the good fight. I keep telling her that we'll take one day at a time and I will go along with anything she decides. She's been talking about hospices again and as hard as it is for me to accept that facet of this, I have to do what's right by her. We're meeting the palliative specialist later this week to talk about it.

The past few weeks I've also been consumed with research and clinical trials. I managed to convince Dr. A to send out mom's tumor tissue to get tested for a specific protein that I've been reading about. I came to know about it through some amazing people I've been who are also fighting the good fight. They are my cancer warriors and fellow caregivers.

The test examines mom's tumors for a specific protein. If  she's tested positive for this specific protein, she can enter clinical trials with drugs that target and kill that protein in the tumor.But, she has to be positive for the specific protein makeup aka bio-marker. Chances of her being positive are extremely low from what I've been told. But, I am hoping...I am always hoping. I am not willing to throw in the towel quite yet. I need to know that when this is all said and done, that I can look in the mirror and tell myself that I've done everything possible that I could have done.

Monday, September 17, 2012

Chemo Round 5 - Session 1

It's been quite an interesting week and I'm a little behind on updates. I've been meaning to write all week but sometimes, I just don't feel like talking about cancer.

On Wednesday, mom started a new round of chemo. We were at the clinic longer than expected because they wanted to run additional blood tests. The reason for the additional blood tests is because Tuesday morning, we had a scare which led me to believe that mom had some internal bleeding of the tumor or elsewhere. It was a side effect of the blood thinner lovenox. As soon as I suspected, I called the doctor's office and explained her symptoms. I was on the phone quite a bit Tuesday afternoon dealing with it. The doctor said that since it was just an isolated incident and mom was doing ok for the most part, that he'd order a INR test to monitor how the blood thinner is working. It's all such a fine delicate line...the blood thinner used to help the blood clot, but a symptom of that is that it can cause internal bleeding. Apart of me feels like if something sudden were to happen to mom as a result of these side effects that I'd blame myself. Mom relies heavily on my opinions (always has) when it comes to her medical treatment. All I know is that the decisions I've been making is something I would do if I were in the position. It's not so much that I am bombarding her with meds out of selfishness to save her no matter what the costs are.

Then on Friday, things just got bad. Not with mom but with me. While taking a shower before work, I slipped and fell in the bathtub and threw my back out completely. I layed there in so much pain and couldn't even move an inch. Luckily my husband was home!  I was so frustrated that it happened. I had to burn valuable sick time because I literally could not move more than a few inches with feeling excruciating pain. I felt like someone snapped my tailbone in half like a twig. That afternoon, I went to my chiro and got an adjustment. He gave me a back brace and told me to ice, and rest it all weekend. I was pretty much ordered to stay in bed all weekend which I did. I remember laying there so upset and feeling completely useless. This was not happening. I had things to do for mom and had to take care of her! Every effort I made to try and push through the pain failed. I finally told myself to just rest. It was the best thing I could for myself and for mom.

Monday, September 10, 2012

Skol Vikes!


This weekend was a good one even though we got some mixed news on mom's progress. It gave us time to talk about what to do going forward and spend some quality time together. I started giving mom her lovenox blood thinner shot which is going ok. She stayed with me for the entire weekend and I was able to keep a very close eye on her. My dogs also enjoyed her company and my german shepherd even stayed with her and she took naps throughout the days. He made sure she was all settled in before laying down to rest on the floor besides her. He's been a great protector of her.


I also took the opportunity to get as much food into her as possible in gearing up for the next round of chemo. I gave her toast, some fresh peach and chamomile tea with almond milk in the morning; organic fruit salad and a chicken wing for lunch; and leftover mostaccioli with beef meatballs for dinner. It was small amounts, but I was happy she was eating. I'll take anything I can get. I apologize for not returning many calls or emails; I just needed time to think about things and really focus on mom.

Yesterday, we watched opening day of Vikings regular season football. It was great. We cuddled up under the blankets with the doggies. It brought back lots of memories watching games with her. I remember years ago teaching her how scoring worked after Rajen taught me. Ever since then, she's been a die hard fan like me. We cheered, yelled and enjoyed one heck of a football game. Go Vikes!



Saturday, September 8, 2012

Mixed News


After meeting Dr. A's nurse and going over all the details of giving mom her lovenox shot for her blood clot, we waited for Dr. A.  We waited close to an hour but we didn't care. We were fortunate for him to see us on such short notice.

Dr. A came in the room and started to tell us the details from the radiologist report. He told us that it seemed that the chemo wasn't working because the tumors got larger. Our hearts sank. He started to tell mom about a clinical trial that's being conducted at Mayo that might be a possibility going forward.  He also said that if mom didn't wanted to do that option, that it might be a good idea to look into homecare palliative options and hospices.

He asked mom how she was feeling and she opened up how better she was feeling the past month. She told him that she had no stomach pain anymore where it once hurt, no chest pain and she could actually eat a little now too. I intervened and confirmed that since starting this new chemo, she's overall been doing better. Outside of the chemo symptoms, things have been ok. Dr. A said it didn't make sense and then proceeded to look at the actual scans and not just the radiologist report. He pull measurements from the tumor growths but he indicated that from those numbers, the increase wasn't significant.

He ended up going into another room and projecting the scans even bigger. He compared the first, second and third (current) scan. He asked me to look at it with him.  As we reviewed and talked about the scans, we noticed between scan 1 and 2, mom's prognosis had significantly gotten worse. There was spreading to more lymph notes, and in the chest area. But,when we looked at the difference between the 2nd and the current scan we took that day, we observed very little growth. In fact, one of the tumors near the esophagus seemed a bit smaller. There was no additional metastasis that he could see.  I was pretty candid with him and said, "it seems to me that this chemo is making an impact somehow, it's keeping the cancer in check".  He told me that he wanted to speak to the radiologist and get this all figured out. He'd call me as soon as he can.

We left the clinic with a lot of uncertainty and about 10 minutes later, Dr. A called me. He said after speaking with the radiologist, that one tumor increased by 10% (if that). He said that there was no spreading either which was very good news. He said typically oncologists will state a chemo isn't working if increase of cancer is 25% or more.  And this wasn't the case in our situation. Before he hung  up the phone, he personally thanked me for making him look at this in greater detail.

I told mom the semi-good news as we drove home. I joked with her on how she's so special that throughout this whole process, she makes all these doctors look at things more than once and even have to retest.  We laughed together.


Friday, September 7, 2012

My New Normal



What a day! I'm simply just exhausted with a day filled with ups, downs and more questions.

Woke up at around 5:00 a.m.  Both mom and I had to get ready and mom also had to drink her radioactive cocktail for her CT scan at 6:45 a.m.  We arrived at the hospital around 6:30 a.m, got registered, filled out paperwork and then waited. We were the first to arrive so it didn't take long for them to call her back. Mom went in at around 6:50 a.m. and the scan itself just took around 15 minutes.

Once mom was done, I dropped mom off at her place and then went to work. My mind wandered about what these results would show and how much it would suck waiting until next Thursday to find out results (the next time we met Dr. A). My stomach felt like a bottomless pit.

At around 11:30 a.m., my phone vibrated. It was Dr. A's office calling. My heart sank as I answered the call. It was Dr. A's nurse and she said that mom's scan came back and Dr. A reviewed it quickly. The scan showed that mom had a blood clot in her chest and they wanted her to be admitted to get it taken care of asap. She said she'd set up the orders but to prepare to come in this afternoon. She also said that the cancer shows that it spread to some more lymph nodes and the cancer progressed a bit on the new chemo regime. I tried to get more answers but she didn't know for sure but she'd arrange for Dr. A to meet with us to discuss the results.

I called mom and filled her in. She took the news as best as she could. She was at least thankful to get news back so quickly. I told her to pack an overnight bag just in case they wanted her admitted into the hospital. Since Stan was nearby mom's place, I called him to pick her up and give her a ride to our place until we knew more from the clinic. At around 1:15 p.m, the nurse called back and confirmed she set everything up and for us to come in at 3:00 p.m. Before coming in though, she had put in a prescription at the nearby hospital for us to pick up and bring with us. It was for blood thinner injections and she wanted to train me on how to administer the shots.

We arrived at the clinic with injections in hand and met with the nurse. She showed me how to correctly give mom the blood thinner injections. I was a bit scared to jab this needle into mom's belly and cause her pain but I knew it had to be done. So, I had to suck it up and just do it. And,  I did and it went fine. Mom even commented on how proud she was of me for doing all this medical stuff.  Her telling me that, made me look back at myself and see how far I've personally come from just a few months ago. Who knew I had the strength in me to do all this? To be constantly thrown in a whirlwind on decisions, all the learning, training and research, being on top of every symptom, drug, treatment etc. I sit back and close my eyes and think how much my life has changed to a "new normal" since May.

To Be Continued....Meeting Dr. A and discussing the CT scan results and what it all means.


Tuesday, September 4, 2012

Thursday, August 30, 2012

Chemo Round 4 - Session 2


Today was the final session of this new type of chemo before we do another CT scan (which is scheduled for Friday, Sept. 7th).  We arrived promptly at the clinic but had to wait for the doctor's approval to actually go ahead with the chemo. Mom's blood draw from yesterday showed her sodium and phosphorus levels were a tad bit low.  She was also given a hemoglobin boost as well today to help her energy levels. Tomorrow, we're heading back to the clinic to do a neulasta shot which is suppose to offset the rapid drop of the white blood count this chemo often brings. Dr. A is hoping that by doing this shot, it will prevent mom from being admitted into the hospital again.

Today's chemo session was just mom and I. It seemed like it's been ages that we went to a session just the two of us since we've had family in and out of town the past few months. It was nice to have her to myself. I was planning on just reading this Archies comic book I found in the magazine rack but instead we talked pretty much the whole time. Actually she did most of the talking; she was quite the chatterbox today.

Blast from the past! The first comic book I ever read...introduced to me by Sandra and Rajen :)
She is especially happy that my aunt and uncle (Sandra and Rajen's parents) came into town to visit her.  I haven't seen her this happy for quite some time. It really cheered her up. It was the first time seeing them after Sandra's funeral back in January. I can tell the pain is still raw...ugh my heart hurts for them. My aunt who's been pretty much the primary caregiver for both Sandra and Rajen..is THE person who really understands what I am going through. I'm not saying others don't understand but to live it and experience it first hand...is to truly understand it.  When you have to dig so deep to be strong and get things done because it is what that is needed. Not a lot of people really get that.

I know that seeing all this must be hard on them as it brings back memories of what they lost.  But, I am so thankful they came to visit and offer their support. I've always considered them my second parents ever since I was young.  They are two of the most strong-hearted people I know.


Wednesday, August 29, 2012

The Shit Just Hit the Fan


Those were the words that first went through my head on June 11, 2012...excuse my language. This was the day we found out that mom tested negative for the genetic marker that makes you pre-disposed to the diffuse gastric cancer in my family.

So what does this all mean?

As of today, top researchers across several countries are trying to figure out why my mom is negative. In layman's terms: There was a genetic marker identified back in 2011 when they ran a full genetics sequencing on my cousin, Sandra after she was diagnosed with gastric cancer (the same cancer that took Rajen). From that marker, family members were given a letter to go get tested for this particular marker as it makes you more pre-disposed (around 60-80%) of getting diffuse gastric cancer. If you were positive for the marker, you'd have a very high likelihood of getting this specific type of cancer.

After numerous tests and re-tests, all we know for certain is mom's blood work keeps coming back negative for that marker. They've even search her entire gene for other markers. They've ruled out that it could be a lab error at this point. They are now looking at other theories..all of which are super rare in a situation rare in itself. After all, only about 150 families worldwide have hereditary diffuse gastric cancer.

The research as it stands now

Over the past few months, I've been the unofficial leader of my family to inform them of what this all means. Before, we thought, a negative result for the genetic marker was a good thing and gave us a sigh of relief. But, after consulting with the consortium studying our family's genetics, they said that all negative results are very questionable. The fact is mom has diffuse gastric cancer that perfectly aligns itself to what Sandra had. It would be obscenely weird for mom to just get diffuse gastric cancer just randomly when there's an identifiable marker in the family. As far as we know, it's never happened before and they are all scratching their heads. There are some theories bouncing around that the marker in mom is hiding itself somehow. If that's the case, who knows who else it can be hiding in that's already been tested negative.

My fear...

is for Mandy and I. We are trying to be proactive and researching as much as we can about this. Our futures are at stake. We were both tested negative for the marker last year but right now that means squat We've both witnessed what this horrific disease is capable of from three close family members. And to make matters worse, early detection of this is practically non-existent. By the time you have noticeable symptoms, you're at an advanced stage of cancer and survival rates in the single digits.

My Wish...

is to find answers and hope it's in time. Whatever is going on, it's beyond my control and it's much bigger than I am. I trust in the research.  I don't want to die from this. I don't want to see Mandy die from this.

I don't want Stan or Mandy to lose me from this.

Sunday, August 26, 2012

Mom Bear



Yesterday, Mandy got the goofy idea to put mom's wig on a teddy bear. She called her Mom Bear. I thought it was cute so I took a pic of Mom Bear. Yes...we are silly but it was a good laugh by all :-)

Chemo Round 4 - Session 1



I'm a little behind on blogging this week. Last Thursday, mom had her fourth (and potentially last) round of chemo. Next Thursday will be the second session of round four; then we find out if this new regime made an impact.

It was actually the first chemo/hydration appointment that I did not attend with her. I figured that since Mandy was in town for the last two weeks in August, it would be a good experience for her to go with mom. It was Mandy's first time going to an actual chemo session with mom. Stan and my aunt also went along with mom for support.

To tell you the truth, it was rather strange not going because since May I pretty much went to everything with the exception of a CT scan. I caught myself calling Mandy's cell to check in even though I knew everything was ok.  I guess I've become a bit protective since this all began. But, it was also a much needed break for me because I knew with Mandy and my aunt leaving town again, life as I know it would get crazy again.

Working full-time, being a supportive wife, primary caregiver for mom, managing all the ins and outs of two households (one with 3 pups), taking care of financial and legal matters since May and being the go-to person in my family to coordinate all the genetics testing, research and theories with specialists from all over the world. The last reason is especially important to me and the ones I love. I will explain more in a later blog once I am able to put it into words. It's been very difficult to talk about.

On a lighter note, my mom got some vistors the day before her chemo. It really perked up her spirits when some of her co-workers visited.





Tuesday, August 21, 2012

TPN

Training hard!
This past weekend, my sister and I got educated in learning the ins and outs of total parenteral nutrition (TPN). As I mentioned in my previous blog, mom needs more nutrition in her daily diet. Dr. A put in orders for the Walgreens Home Care program. The nurse came to mom's place and taught Mandy and I how to administer the fluids. It's a pretty intricate process and doing it the correct way is of high importance since we don't want any complications. Knowing someone's life is in your very own hands is a weird concept; there's no room for a mistake.

The first time Mandy and I did administered the TPN for the first time alone was..um..interesting. We were ridiculously slow. We had one little hiccup with the tubing having air bubbles but we trouble-shooted the problem and got it working. Mom even made a funny by saying, "You guys shouldn't give up your day jobs".

All in all, not too bad. I think once we do it a half dozen more times, it'll be second nature.

Nutritional goodness
Lots o gadgets!
Vitamins to be mixed
Mandy chillin' after a learning TPN

Friday, August 17, 2012

Small Steps


Mom was discharged from the hospital last night. She is doing a lot better. In the past few days we met with numerous medical professionals (nutritionist, gastroenterologist, palliative doctor etc.) along with visits from Dr. A. We all came to the consensus that we are going to just think a few steps ahead and manage whatever issues/concerns come up. We are not thinking too far ahead. Mom was given some new medications to manage symptoms and get her on track for the final round of chemo which is next Thursday. After long talks with Dr. A, she really wants to go through with this second round of the new chemo. Once that is done, we will do a PET and CT scan and make more decisions.

Up to this point, the primary reason why chemo has been hitting her so hard is the lack of nutrition. It is difficult to keep food down due to the stomach wall not contracting. She will be taking a med called reglan to aid in digestion. We were also given an option for the GI to scope and see if there's a blockage (if this is the problem). If indeed the blockage is the an issue, we will think about inserting a stent in.

Over the next week and next round of chemo, the doctors will be fully loading her up with whatever it takes to manage her pain and keeping her nutrition high. She will be doing some home care hydration which will be very convenient. It will serve as the backbone of her nutrition.

 I am glad that the team of doctors are so amazing and informing her of all the possible options out there. Not only are they highly educated but they are truly compassionate. They've taken the time to know the family history of all of this. I feel like if this were to happen to me, I know that these are the people I want my medical care with.

Tuesday, August 14, 2012

Another Hospital Visit...Sigh


Today we went in for a hydration appointment at the clinic after mom's been feeling super fatigued and has been experiencing a lot of pain. We started the fluids as normal and luckily I ran into Dr. A who wanted to know how mom was feeling. I mentioned her symptoms and he ordered immediate rush blood work to be done.

As I suspected, her white blood count dropped to a critical 0.8. Not good! She also had a low grade fever as well. Not good!  He put in the order to have her admitted into the hospital again to get things under control.  My sister, Mandy is visiting so she's been able to help Stan and I out a ton. Last time, we were bogged down beyond belief.  Dr. A came to visit in the hospital as well to evaluate what our options are at this point. We're considering pulling off of chemo once and for all and just going the palliative route. It's really hard to say that word but chemo is really diminishing my mom's life. I've come to understand that a longer life is not necessarily better. I just want my mom to not be in pain and for her to be as comfortable as possible. For her to feel normal again or close to it...

I will update more tomorrow.

Monday, August 13, 2012

Pet Therapy

Ever since mom got diagnosed back in May, I've noticed a significant change in my dogs' behaviors. Back in May, they would always sniff her tummy as though they knew she was sick. I remember there were nights that she'd be in pain and moan and my eldest dog, Xavier would get up from his sleep and lick her face to make sure she's ok. It was like clockwork throughout the whole night. He'd make sure she was okay and then go lie down next to her.

Then as mom started chemo, my dogs became more close and in tune with her. When she'd be resting, Blizzard would jump on the bed and lie besides her while my other two dogs sat on the floor close by. They did not want to leave her side. When mom would get up, Blizzard would let her rest some of her weight on him to get her balance and guide her slowly to where she was going. It is an amazing sight to see. She really has a bond with them. She would even mention dreams she'd have where the dogs would protect her. I hope that my dogs are giving her at least some sort of comfort in these hard days. They love her so much.


A Nice Little Outing



This past weekend, mom was up for a short little outing. She was still very tired from the chemo but she wanted to get out and enjoy some of the nice weather. We only went out for a little while but I took the opportunity to get some pictures. With this new chemo, she's completely fatigued and lethargic all the time so she has to rest and conserve her energy as much as possible. She also wanted to get a bit dressed up so she wore her jewelry pieces. She wants to thank people who've purchased pieces of The Rita Collection and supporting stomach cancer awareness. It means a lot to her.




Thursday, August 9, 2012

Chemo Round 3 - Session 2



Today's session went well. Mom is feeling pretty good.  Her white blood count was a bit low but it was still within a reasonable range to go forward with the chemo treatment today.

She was in good spirits as her two sisters came to visit her again. It was a girls day at the chemo clinic today. They told me stories of when Mandy and I were young and all the naughty/cute things we did. It filled my heart with so much joy to see mom laughing and reminiscing of the past times. I wish all days can be good days like today...

A fellow stomach cancer warrior friend of mine wrote this as her Facebook status yesterday. I thought it was fitting because up until a few months ago I really didn't know deep down what a 'bad' day was. The things you see right before your eyes and the pain you have to push through to make it to the next day is life changing.

Feel free to think of me when you're having a bad day. I just feel blessed to have been given another pain free day! :-)  -- MC

Here are some pics I took of mom and my aunties today. Mom is sporting some pieces from The Rita Collection.


Friday, August 3, 2012

Chemo Round 3 - Session 1


Yesterday we started the third round of chemo. There will be 4 sessions in this round. Mom is relaxing a lot today. This  new chemo makes her very weak and exhibits a lot of  flu-like symptoms, so we are trying to manage that. We're also keeping a very close eye on blood counts and making sure she's hydrated. She wants to thank everyone out there for thinking of her.

Here are a few pics we took yesterday!




Thursday, August 2, 2012

The Rita Collection



The wait is over. The Rita Collection is here!

I am so happy to announce this jewelry line dedicated to my mom and her journey. The color red was chosen because that is my mom's favorite color. It signifies passion, strength, and courage.

With any purchase from The Rita Collection, 20% of proceeds will be donated to No Stomach for Cancer, a charity dedicated to raising awareness and funding research for stomach cancer. They've helped me personally through difficult times and I believe in the work they do as it directly impacts my family.

I encourage you to support this amazing cause and my mom, Rita. My mom loves jewelry and will be sporting a few pieces very soon.

I heartfelt thank you to Jana Litecky, who put her heart and soul into this. Words cannot express the gratitude I feel.

To order go to: http://shoppingbuyfaith.com/stomach-cancer-awareness.html

So, what are you waiting for? Go shopping! :)

And when you do buy your bling, please send me a pic (loritas@gmail.com) of you wearing it. I want to show mom how much support she has.

Wednesday, August 1, 2012

This is it



The last few days have been so low for me. Mom has been having a rough couple days. She's been unable to keep anything of sustenance down and many other issues that I choose not to discuss.

I'm scared about tomorrow. This is it. Will this new chemo be responsive and give us more time? I'm so so tired of bad news and so is she. The realization that she won't make it through this has been taken a great emotional toll on her. All I can do is be there for her. A shoulder to cry on and a voice of hope. Up to this point, I've done a decent job at keeping my tears at bay and focusing on what I had to accomplish. But this week, I find myself just crying all the time because she's asked me to start doing research on hospice care and final arrangements.  

I also think of that look she gave me at our last appointment when she found out the cancer got worse haunts my mind. The tears that flooded her eyes and the trembling of her lips...it was like she was the child crying and I was the mother comforting her.

I am not very religious but tonight I am praying for some good news as we head into chemo round 3.  Sandra..Rajen...she's not ready yet.


Capacity of Love

My dad came to visit from New York for a couple weeks to help me out with whatever he could. I just wanted to thank him for coming to Minnesota. Even though we live in two different states, it's was comforting to have my daddy here.

I remember when I was a little girl and running into him arms when mom was chasing me around because I had done something mischievous.  He was my knight in shining armor and protected me from whatever punishment I should've gotten. :-)


Saturday, July 28, 2012

Nurse Rita

Watching the opening ceremony of the London Olympics last night (the segment featuring the amazing nurses and doctors), I couldn't help but think about my mom and her adventures in London in her youth.  I spoke with her for several hours today about her time in London since she was feeling somewhat "normal".

A lot of people don't know this, but mom use to be a nurse at Kingston Hospital in Middlesex, London. She resided there from age 18 to 21. She did rounds in the children's ward with very sick kids. She said how it broke her heart to come in on any given morning and see an empty hospital bed. She said that was one of the main reasons, she stopped being a nurse. It weighed heavy on her heart seeing the innocent dying.

I remember when I was sick as a kid with chronic bronchitis and how miserable it was.  But it was always so comforting knowing that my mom was taking care of me.  She made everything better. There's nothing that can compare to a mother's love. I hope these past few months I can do a fraction of comfort, she's done to me. I love my mom...

Nurse Rita

Thursday, July 26, 2012

No Stomach for Cancer


I am excited to announce that in a few weeks, my mom (Rita) will have her very own jewelry line called the Rita Collection. I recently teamed up with the very talented, Jana Litecky who is the owner of Jana Litecky's Jewelry, to design some pieces of jewelry that honors my mom. I met Jana earlier this year at a Zumbathon charity event that we donated our photography services at. I remember immediately liking Jana's business model because it was quite similar to our Zumba charity program in our photography business. 

With any purchase on her website (http://www.shoppingbuyfaith.com/), she donates 20% of the proceeds to a charity of your choice. I was thrilled beyond belief that she agreed to go along with my idea of having No Stomach for Cancer be a charity choice when you purchase. Not only will she donate 20% of proceeds from The Rita Collection, but she will donate 20% of any other purchases on her site too.

The strong hearted people at No Stomach for Cancer are great! Not only have they helped me personally these past few years, but they've done so much with regards to awareness and funding research of stomach cancer. They are a small organization but offer a lot of support in the stomach cancer community. This is why I support them and I am hoping that the Rita Collection is successful.

I surprised my mom with the news yesterday. She was amazed that people she didn't even know, loved and supported her. She is very touched.

Wednesday, July 25, 2012

The Hail Mary

Today I pick up the pieces, take a deep breath and push onward. I am digging deeper each and every day that goes by for the strength to do this. Why? Because, there is no alternative.

I had a lengthy phone conversation with Dr. A this morning and we went over several new treatment regimes to explore. As with any chemo treatment, we are not sure if it will be responsive but we are giving it a shot. We both agreed that we had to try a completely different new drug combo and not a modification of EOX. He consulted with the team at Mayo and they suggested a regime of two new drugs (docetaxel and ironotecan). According to Dr. A, this combo has a 40% of tumor/cancer shrinkage but it really depends on how an individual body will respond to it.

At this point, it's sort of a Hail Mary...a move out of desperation towards the 'end' with only a small chance of success. Mom has until Tuesday to decide if we go this route or stop chemo completely and ride it out.

The three of us on mom's 60th birthday - Love you MOM!