This blog (or personal journal) is my way of documenting my experiences as I deal with cancer and it was created to share updates with my family and friends. It is a story of my #Livelife Detour. As I move "through" my fight against Follicular Lymphoma - it helps me to process by writing about it here. #onlywayoutisthrough
Showing posts with label #livelifedetour #onlywayoutisthrough #grateful. Show all posts
Showing posts with label #livelifedetour #onlywayoutisthrough #grateful. Show all posts
One year! I cannot believe it. I know many of you feel that it went by so quickly, I am here to say...it did not.... but here we are. Stronger than we were a year ago. This week is filled with mixed emotions! Of course, I am so excited to be celebrating ONE YEAR, but Wednesday morning is also my one year pet-scan and there is always that small possibility that the cancer returns, so there is some degree of anxiety there. From experience, I know that attitude is everything, and there is power in positive thinking and prayer. So I will ask for both from all of you - Wednesday morning around 6:45am PST. Yes, that means that Dana and I are leaving the house at 5:15 am to get to Cedars Sinai for a 6:25am check in. Good news is that we will miss the traffic and at about 11am, we will have the results.
I wanted to share these pictures because although, I am still being careful from covid, and any other germs that are out there - I am starting to live again and loving life! I got to spend some time on a ranch, met a goat named Beth (Yellowstone) started watching the show and am now obsessed with visiting Montana, finding a cowboy and riding a horse (of course - running into John and Kayce Dutton aka Kevin Costner and Luke Grimes wouldn't be a bad thing either).
Keeping this short! Raise a glass for me today! Happy Re-Birthday! Cheers 🥂 and send a prayer, positivity, good mojo, whatever you have - for clean scans on 08.24.22! Stay #cancerfree.
Right now, I am sitting in my newly update backyard which really turned into a hidden paradise for me, the wind has kicked up, it is 5:30ish and still 72 degrees out which is lovely and I am happy. The dogs have learned to just chill out here with me (well except for Charlie Bear). Life feels really good right now. I am 10 days out since my last round of chemo and I feel good. Perhaps the glass (or two) of sparking rose has helped me to feel so good - but that is what makes this even better - I am enjoying a glass of sparkling wine. It doesn't taste weird or metallic, in fact, it tastes fantastic!
Tomorrow, I have a bone marrow biopsy. Have any of you had one? The first one, in January 2019 - I really was a warrior, I did it in the doctors office with some local numbing stuff. Then in July of 2019, the oncologist (we call him Dr. Danny) tried to do it again, but my nerves had become so sensitive from all of the chemo - he stopped before I did....he said he could not keep putting me through that pain. They basically stick a needle into your bone and pull out some marrow (OUCH, right?), so they sent me to Hoag Hospital to have it done under twilight anesthesia which honestly still really hurts but it is quick. So tomorrow I get to do that again. It will let us know if there is any cancer left in my bone marrow. When I was originally diagnosed, 90% of my bone marrow was cancer.
Friday, is a day to celebrate, I get that damn port removed from my chest. The one that they placed this time with the catheter over my collar bone and right into my jugular - so for the last 6 months, every time I turned my head, I felt it tug. It has been awful and uncomfortable, sleeping in any position other than on my back, impossible, and when I asked at two months in, if we could fix it, they said "is it oozing? swollen?" No, I said just extremely uncomfortable, which they replied, we cannot help you if it is just uncomfortable - so as soon as I heard that they are not using it for the stem cell transplant - I said - let's get that thing out of me. and so July 9th - they will do that!! Great advice from a new friend "Take the port with you to the bars on Friday and wave it around like a trophy" - so you know where I will be Friday night!
The following week is filled with a Petscan, a full day of pre-transplant workup tests (chest x-ray pulmonary function test, echocardiogram, echo doppler, full blood panel including a check for infectious diseases, and a call with a social worker to be sure I have support when I get home from the hospital. After the 16th of July, I should get to really just #livelife until August 6th when they start the mobilization/harvesting of my stem cells (we can discuss that in another post).
So....for now. I am going to enjoy tonight and all of my good days, my July. Walks on the beach, coffee with friends, evenings in my backyard with a glass of something cold. If you want to join me....reach out! I already have a duffy boat ride on the books, and I am ready to fill my dance card at least for the next couple weeks.
There is a fork in the road ahead. If I go one way, I get a stem cell transplant. If I go the other way, I get CAR T-Cell Therapy. These are options, I do not get to choose. One is not better than the other. It works like this.
If I am chemosensitive, meaning the cancer is responsive to this chemo, then we continue until I am as cancer free as possible, and I a get stem cell transplant. To get a stem cell transplant(auto), your body has to be disease free, as they harvest your stem cells to later infuse back into your body.
If I am chemorefractory, meaning the cancer is not responsive to chemo, then I would go the CAR T-cell therapy path. This is a type of immunotherapy. Up until March 5, 2021 I would have only been able to get into a clinical trial which I would have qualified for by having had two lines of treatment that failed. However, on March 5th, the FDA approved CAR T-Cell for patients with Follicular Lymphoma (what are the odds of that happening). With this, they harvest your T-cells and re-engineer or genetically modify them to fight only lymphoma. Then they return them to your body, and they fight the cancer - science is just fucking amazing!
Monday, April 19th - I will have the Petscan to find out which of the above I am. Then I will know more about which way this road will bend...I have done research on both. They both require at least a three-week hospital stay. They both have side effects. They both have success rates. Every "body" is different.
I am going to leave it at that. I have learned an incredible amount of information. I am now watching scientist and doctors webinars from all over the country. The Internet is awesome! You wonder why I have anxiety, haha - no just kidding - for me, knowledge is power.
Below are some resources/videos for those interested in knowing more.
I have a lot to catch you up on...some of it, really good...with a few bumps along the way. Thanks to one of my best friends for the title of this post, inspired from a card she sent. This is my #livelifedetour - granted a much longer detour than I had expected, so of course, there will be bumps along the way.
Anxiety, stress and a side of chest pain... I started having chest pains Sunday, February 14th (no, my heart wasn't broken on Valentine's Day 😂). The pains were sporadic and sharp and right behind my left breast (where of course, my heart lives) so it was scary. They would come and go but without a pattern. Sometimes, I was sitting still, sometimes I was walking around. On Wednesday during chemo, I mentioned the chest pains, and after checking with the doctor, they recommended seeing a cardiologist ASAP. Okay...but I do not even have a cardiologist - do you? So, I called my "new" primary care physician and was able to get into the office the next day. They did an EKG and checked vitals...all were good. So they referred me to a cardiologist and said if it got worse, go to the ER. (oh my gosh - my anxiety was off the charts). Friday night was the worst...but Saturday and Sunday, the pain become less sporadic. I made it to Tuesday, when I saw the cardiologist. Based on my descriptions, he didn't think it was cardiac related but was still going to order a stress test and echocardiogram. Phew...I went home relieved, yet still anxious.
Earlier that day, I had also spoken with the nurse, and she suggested pepcid and tylenol in case it was reflux related so I had started taking that as well. The pains lessened and turned to pressure at night. I was short of breath but I had also just had chemo 3 weeks in a row and was exhausted. So I worked through it, and waited for the next test to rule out what it wasn't.
Finally, last week, the pain and pressure lessened and I had a few good days before cycle 2. What I don't understand is the level of anxiety that came over me. It is so controlling, several days or evenings, I could not get out of my head fast enough before the feeling of a panic attack took over...I find this so dumb and honestly annoying. Thank goodness for my sister, who would talk to me to break the thought processes and some silly singing and dancing around the house when I couldn't get a hold of someone to talk to. Seriously, I have got to get a grip!
Reminds me of an Rorschach inkblot test - my lungs
This week, Wednesday and Thursday were chemo days...Dana and Martha tag teamed and sat by my side, so grateful to be able to have them in the room with me. Thanks to Remy and Rachel - rockstar chemo nurses for making it happen.
I saw Dr. Danny (local oncologist). Although, chest pains had subsided, he ordered a CT angiogram (STAT) to make sure there wasn't a blood clot or pneumonia in my lungs. So after chemo on Thursday morning, I went right over to imaging to get the IV contrast CT scan of lungs and chest (thank you Martha for going to that with me too). Scans came back clear.
Friday, was the stress test (checking that off my bucket list). I unofficially passed even after two days of chemo - so I think the heart is good. Still have to do echocardiogram on March 18th but things are looking ok there. Clear lungs, tickers seems healthy, chest pains are gone...so a few bumps but all good.
Latest symptoms: nausea, headache, lack of appetite, fatigue, metallic taste, low platelet counts. Cycle 2 done. 24 days until cycle 3.
Updated 3.9.21: lower back pain and bone pain in legs -30% of patients get this - always fun to be in the lower odds, mouth sores (I call these moving target symptoms....chemo...the gift that keeps on giving!)
Feel Good Files Tuesday, ended with the biggest surprise! A CAR PARADE! Yes...for real...over 40 friends and colleagues got together, decorated their cars and drove by my house honking and shouting love and support! It was honestly AH-MAZING! I was blown away....see video below. I definitely felt the love 💕 .
More feel goods from the last couple of weeks....
Amazing car parade
Fresh fruit and vegetables delivered from the farmers market
Beautiful flowers left on my doorstep
homemade banana bread dropped off
dinner from neighbors
lots of texts and messages with love and support
homemade chicken soup with a side of matzoh balls and a visit from two of my favorite cousins
One year! I cannot believe it. I know many of you feel that it went by so quickly, I am here to say...it did not.... but here we are. Stronger than we were a year ago. This week is filled with mixed emotions! Of course, I am so excited to be celebrating ONE YEAR, but Wednesday morning is also my one year pet-scan and there is always that small possibility that the cancer returns, so there is some degree of anxiety there. From experience, I know that attitude is everything, and there is power in positive thinking and prayer. So I will ask for both from all of you - Wednesday morning around 6:45am PST. Yes, that means that Dana and I are leaving the house at 5:15 am to get to Cedars Sinai for a 6:25am check in. Good news is that we will miss the traffic and at about 11am, we will have the results. 
