I seriously had things to write on here about for two months. Two months I have delayed writing. It has gotten to the level of procrastination that I forgot about things to write about that are related to living with cancer, but not related to how I am handling my current medical treatments. Chemo brain is real & honestly I try my best to remember everything and take time out of my day to discuss the happy past memories with my husband and I do write, read & craft, which have been shown to help with memory and attention for people who are losing some of their memory due to illness or in my case due to the stress from having Cancer and the stress affecting my memory.
I would like to note, that one of my few good mets sisters, Amanda, whom is still alive and able to write on her blog touched on some of the topics that I do remember wanting to write about. One of her recent entries that she and I spoke at length about was how Good News really feels when you have a terminal illness. I did share my personal experience with this back in my blog entries from this June. I feel that Amanda wrote a better blog entry in August about what it really feels like when a Metastatic Cancer Patient gets Good News. How Good News Really Feels Like . I really encourage you to read her blog. Her most recent post also discusses the whole theory that people think Cannabis is the hidden cancer cure & she also wrote about how it feels when people ask "How did you get Cancer." Read her blog, she seriously read my mind from her home & wrote lovely entries on all topics.
I do have other experiences and opinions about how I feel when I get Good Cancer News, the reality of holistic treatments & cannabis as a cure all for Breast Cancer, and also how I personally feel when people ask me How I Got Cancer, which for me is - "what mistake did you make, so I can avoid getting cancer." These are some of the topics I hope to address this month as I want to dedicate more time to writing my blog entries about my feelings, insight and the medical research to support some of the topics I will write about for myself, my support network and for any breast cancer patient, advocate or doctor. Well as you can see I wrote 3 paragraphs on why I continue to plan to procrastinate. I am the best procrastinator, so I am trying to hold myself to writing a blog entry at least every other week until I have a health change to share or I run out of topics that I feel passionate about. I have faith I can take 1-2hours out of my day to write and proofread my blog entries, but for today I do want to share how June, July and August went with my health.
I guess I will start with July and then bring us up to today.
JUNE 2018 HEALTH UPDATE
Through the majority of June 2018, I was dealing with low neutrophils. Low neutrophils, means I also had low white blood cells, and my immune system was pretty bad. I had to end both of my Xeloda cycles early, so I could get injections that boost my white blood cells & neutrophils. The point of these shots were to boost my immune system, so I do not get sick and have to miss any of my IV Chemotherapy. The shots are the only way to boost the white blood cells and neutrophils. No foods are known to increase WBC or neutrophils. You can take foods high in probiotics and prebiotics to help your immune system, but they really do not help if your WBC count are a 1 & normal is a 4 or above. I was hitting a 1 after every 2nd week of Abraxane, was given my 3rd week of Abraxane, and despite getting three shots to boost my cells every time, my cells never got much higher than a 4 or 5 and would continue to drop even with a week off of my IV Chemo and stopping my Xeloda mid cycle. Lets just say by the end of June my immune system was really taking a hit, I was not allowed to go out in crowded public places without a medical mask, and I was drained beyond belief so I had to sit on the couch even though I really wanted to be out enjoying the weather.
JULY 2018 HEALTH UPDATE
As you can see in June my immune system was really getting beat up. Usually if this happens in the cancer world, a person is at a high risk of developing infections. I took every precaution to avoid germs - masks, hand washing, hand sanitizing, and keeping a super clean house. Despite taking all of these precautions, around July 4th I began to cough up green phlegm and I had a fever over 99.9F. My fever was not going down with antibiotics or tylenol, so I asked Kyle to take me to the Riverview ER (they work with MSKCC in Middletown and serve as the local hospital for that clinic). By the time I got to the ER, I began to experience respiratory distress & shortness of breath, continued to have a nasty fever, had low blood Oxygen at rest and a very high heart rate. I was on my 4th day of ZPack and my symptoms were not getting better. I was admitted to Riverview where I was given scans that showed signs of Pnemonia & and Lung Inflammation. My lungs continued to decline in functioning, I was unable to sleep, started to have panic attacks that I was going to have to relive the hospitalization at NYP-Cornell last fall and that this time I may die because it had to be the cancer. I ended up blacking out from Panic Attacks for three days and my memory of the day I was admitted is also very hazy. This had to due with my anxiety and lack of oxygen and blood flowing to my brain, so my brain went to sleep to protect itself.
I did wake up from my haze. I found out that the scans showed SIGNIFICANT IMPROVEMENT in my Lung Tumors, Pleural Tumors, and Lymph Nodes. I did celebrate this news and gave my oncologist a "pound" in the hospital. Unfortunately I still had some nasty inflammation, an infection and I was not eating and lost 15lbs in the short time I was sick from 7/3-7/10. I lost a bunch of strength and I was back on oxygen. I felt like although the cancer was shrinking, my body was failing me now & I began to have panic attacks that I would never gain back the weight, gain back my strength or come off of oxygen.
I was in the hospital for 10days and left the hospital on 1L of Oxygen & I was on 70% of oxygen during those days my brain took a vacation. I was very depressed and upset that despite the cancer shrinking, I had to work super hard to get off of the oxygen and also regain leg mass & strength. Long story short, two weeks after I was discharged I had gained back 10lbs, was able to do my normal routine without getting out of breath, and I was off of oxygen.
Unfortunately, this illness and hospitalization caused me to also stop a Xeloda cycle early and then I missed a full cycle of all my chemotherapies. Needless to say I was very nervous that the break from chemo, although it allowed me to heal, would allow my cancer to grow.
AUGUST 2018 HEALTH UPDATE
As we approached August I was already about to complete a full round of my IV chemotherapies and the two cycles of Xeloda, but my neutrophils took a hit and I missed my 3rd week of IV chemotherapy and I had to end a Xeloda cycle early. At this point, my doctors came up with a plan to help me not keep missing my 3rd week of Abraxane and to also to not have to stop my Xeloda mid-cycle, so I could take preventative injections to boost my WBC and neutrophils on week 2 of Abraxane, which is also my off week from Xeloda. Turns out that worked!
I also had my 3mo brain MRI, my first Full Body CT in 6mo, and first abdominal ultrasound in 6mo. Overall, my medical team was very pleased with the scans.
The Brain MRI did show two new tiny tumors, which my Radiation Oncologist suspected could be due to all the chemotherapy breaks. We decided to rescan my brain in 6 weeks in Mid-Sept. My Radiation Oncologist and my husband were both concerned about the two new Brain MRI spots. On separate occasions each one of them asked my medical oncology team to do a Full Body CT Scan on me to make sure the treatments are working on my body and that there are not any new tumors in my body as there were those two new tumors on my Brain MRI.
Now after enduring a bunch of my rambling about my health this summer, here is the GOOD NEWS - I will just say that the full body CT Scan showed significant regression all over. There even was regression on my Chest CT when compared to the emergency Chest CT I had in July at Riverview. This means we will continue my current chemotherapy into the next three months or until I need an emergency scan (lets pray this does not have to happen). We also figured out how to avoid my neutrophils from dropping too low, so I can now receive my 3rd week of Abraxane and 2nd round of Xeloda for every cycle going forward.
In summary, I began the summer hearing excellent news about all of my lab-work showing tumor markers dropping significantly since starting Abraxane, Avastin, Xeloda and Xgeva. We also went to Riverview to get an Ultrasound of my abdomen to see if there were any pockets of fluid that could be drained. The CT scan did note Ascites, but reported that they were much smaller and fewer than my last Abdominal CT Scan at the end of January. The ultrasound showed tiny pockets of fluid but they could not be safely removed. I still have a slight beer belly, which is due to the continued tumors in my omentum/peritoneal lining and the tiny ascites that remain. The goal is to allow the chemotherapy to continue to work on the ascites and tumors, so my stomach will go down on its own.
The biggest disappointment has been the beer belly that I have had for a year, but a year ago it was significantly larger and draining 3L of fluid every week or sometimes twice a week. What I can take pride in is that I haven't had to have my abdomen drained in 8mo and there continues to be shrinking tumors in my abdomen and my stomach shrinks slightly every chemo cycle. I will take that over a growing abdomen, more tumor and needing to get my abdomen drained just to be comfortable. Granted I really hoped it was just one pocket that we could drain and that I would have my flat stomach back, but it may take some time before I can wear a form fitting top without some A$$ asking if I am pregnant. I do not even want to discuss how upset that makes me. It hurts my confidence and also reminds me that I won't ever be pregnant, but I have been pregnant with deadly tumors. Sometimes I can brush that off, but sometimes I end up crying due to not being able to wear a lot of my clothing that I love. I have found ways to conceal my abdomen so I at least can feel confident in a loose top.
SEPTEMBER 3, 2018 - How I feel today
Granted I had great scans in August, which makes me happy, but there are still feelings of fear and worry of "when will this stop working to fight back the cancer" or "how much longer can my liver and kidneys handle these toxic cancer treatments before I begin to lose liver and kidney function." I try my best to discuss these thoughts with my doctors, therapist, family and husband. Through talking it out and then redirecting my thoughts to the positive progress I have made with my health over the next year is incredibly helpful.
Caitlin and the COLD
Also I want to note that I am writing this entry with the first head cold I have had in three or four years. It sucks. My head feels like a balloon. I actually somehow prefer the chemo sickness and cancer pain, I guess that is what I have gotten used to. A head cold makes it nearly impossible for me to function due to the pain in my sinuses, ears and throat and the runny nose and a throat so sore I can only eat liquids or soft food.
I was hoping this was just an allergy thing, but my symptoms did not get better with Zyrtec. In fact, my symptoms just got worse from Friday to yesterday. They were more tolerable due to taking OTC medication, but my throat was not improving and my nose was running like a leaky faucet. I told myself I would give myself 48hrs before I either go to the ER (if I had a fever and/or colored sputum) or take the emergency ZPack my pulmonary doctor gave me for colds or sinus issues that had no fever. Lucky for me, I had no fever or colored sputum, so we avoided the ER. The most annoying things about this COLD is that I am literally couch bound to recover and rest, I have literally gone through two large boxes of tissues from Friday to Yesterday, I have a bloody nose from all the tissue usage and I also missed out on BBQs for another holiday this summer.
I woke up today feeling worse than yesterday, I literally was crying that I could not handle a cold, put myself at risk for a possible infection, go to an ER without having an anxiety attack, or deal with the fact that a stupid cold I obtained due to a crappy immune system from my cancer treatments has made me a prisoner in my own home who has missed out on the last of the summer BBQs. Today I felt I worse due to only getting four hours of sleep, which makes symptoms worse in anyone because I was unable to rest and recover with proper sleep. I decided that it was time to take an antibiotic and see if that helps.
It has been 4 hours since I took my pain reliever, zytrec and antibiotic and I already have less sinus and ear pain. My throat remains sore, but if my sinuses are not in pain, like they have been for the last two days, I am sure my throat should be better in 1-3days of rest, hydration and proper medication. If I get a fever after doing everything I can for a cold, then I will call my doctor and go to the ER. Lets hope that does not happen and that I do not have to endure the anxiety of having to go to the ER and getting admitted to the hospital.
ok I need to rest. I should have left this blog for another day, but if I kept procrastinating, it would have never gotten done. Also I did not want to worry any readers wondering what happened to me since early June. I mean when I have read other cancer blogs and the writer goes MIA usually something bad happens, so I wanted to make sure people know that yes, Cancer sucks and its bad, but my cancer is better and for now I am trying to just combat a cold.
