Wow….I’ve made it through my first 2 weeks of treatment! This is the low-down: 7 blood draws, 10 bags of IV Zofran (anti nausea), 10 chemo IVs, 23 EKGs, 1 central venous catheter insertion, 24 heparin flushes, 2 dressing changes, 1 visit with Dr. Garcia-Manero, 6 visits with a Physician’s Assistant or Nurse Practitioner, 11 visits the research nurse, and 1 bone marrow aspiration and biopsy. Grand total before insurance: $18,637. I hate to think about how much those chemo drugs would cost if I wasn’t in an investigative trial! Thank you, thank you, thank you for my health insurance! And I have survived this madness!!!! After my week off at home we will start another round. Dr. G-M is out of town this week giving a speech somewhere so I’ll be happy to see him next week.
My blood counts are doing funny things…hemoglobin is up (!), absolute neutrophil count is up (!), and platelets are way down (which is expected).
I don’t know if I will blog much while I’m enjoying my week off at home. Here is my good thought I am taking with me. My dear friend Rosanna told me to always keep a smile on my face and my body will follow! That is good advice for everyone! I love you and miss you Rosanna!
Here is me getting my chemo. By the way, the chemo nurse must wear a paper gown over her scrubs, a mask, and 2 pair of gloves before opening the bag containing the chemo drug Velcade and administering it to me!
Well I am very sad right now…..Wade just left a few minutes ago to fly home. And even though I get to fly home Saturday, I am still very sad! Wade has been truly phenomenal! The very best caretaker a person could ever hope for, and on top of that my sweet hubby I adore and love. Thank you Wade for always being there for me and then laughing with me about it later!
So what better way to give me happy thoughts than my grandkids! Here are pictures we took right before we came to Houston. Oh how I love them!!!
Got moved in to my apartment yesterday… We rented it without looking at it, and are very pleased. It was so nice not to wake up in another hotel this morning! Very nicely furnished, top floor, feels safe, and has shuttle service to med center. So we tried the shuttle bus this morning and it worked great! Took about 15 minutes. I’m going to like not having to negotiate parking garages every day! Crazy that I rode a shuttle bus everyday to the building next door to MD Anderson to go to dental hygiene school at UT Dental Branch over 35 years ago!
My blood levels are hanging in there! My hemoglobin actually went up….I love this new found energy! Even if it is sporadic! And doesn’t last very long!!!
Here’s a little side note about Julio, my Cuban friend. He is soooo excited about his upcoming trip next week to Colorado because he will see snow for the first time. Please let there be snow for Julio!
Here are some pics of my new digs.
Ok food….we have to talk. I have loved you all my life. I have devoted countless hours learning all about you and tastefully preparing you. Spent lots of money on you and books about you, and shared you with lots of people. So why are you doing this to me? You are no longer appealing to me. Just when I think I am hungry, after a few bites you turn on me again! You just don’t taste like you should. Please don’t do this to me!
And what’s up with every where I go, I smell fried chicken?! I like fried chicken, but it is getting annoying smelling it a lot, even outside in the open air. Can I at least not have fried chicken, maybe chocolate chip cookies or coffee? Think about it, food.
Sitting in the chair unit receiving chemotherapy (as opposed to the bed unit….they both have beds!). About to have my first week behind me! Yay! The drugs are beginning to affect me while they are dripping in, headache, nausea, dizziness. The good thing is that it is pretty much gone by the time I am finished. I can do this 🙂
Everyone have a great weekend!
Julio is the guy who comes and gets my EKG in the evening (we’ve been here until 8:00-8:30 every evening). His accent is unusual, so I asked him where he was from…..Cuba. He is a medical doctor. Two years ago he went to Uganda, Africa to work in his field (oncology). He defected to the US, through the American Embassy. He can get his license to practice here if he will study and pass the exams. Meanwhile he is working in the research lab. He told us he would be imprisoned for life if he ever decides to return, which he won’t. His parents are still there, and not allowed to leave. He is a very kind man, and his story touched me.
Small world department: while walking through the clinic someone called out “Wade, what are you doing here?”. It was a girl from Hereford that worked at one of the other banks in Hereford, and moved to LaPorte a few years ago. Crazy!!
Met Kelli and Lynzi at Outback for steaks and had a great evening. Lynzi had just passed her driver’s ed course, so we had something to celebrate! Good times!
Today my infusion nurse, Marsha, told me that her dad is the number 1 person in the trial I am in. This was cool to get to visit with her because he started 2 weeks before me, so I had a lot of questions for her and what his side effects are. He is doing good, with tiredness being his biggest problem.
Out of the hospital at 8:00 p.m……another long day. Time for some Italian food! Collina’s over on Richmond is a small little place that makes awesome pizza. They import 00 flour from Italy for their crust. It is so yummy! Great ending!
Blood work, EKG, and the dreaded PICC line insertion! This is a catheter that is inserted in your upper arm and threaded all the way to your heart muscle! I asked “can’t you just thread it in just a little bit?”……no it has to go all the way so that the chemotherapy is dispersed immediately with each heartbeat, otherwise it would burn your vein. Or at least that is what they told me! Ok y’all, I was glad to have that over with! Wade and I had to go to class two times, and then do a demonstration on how to care for this line! It has to be flushed daily with heparin, and weekly end cap and dressing changes. After Wade passed the demonstration we were able to go get the supplies. It’s not a little bag, we are talking about a big bag full of stuff!
After the PICC line was done, it’s time to try it out with my first
chemotherapy treatment. EKG first, then a 30 minute drip of anti-nausea medicine, then both chemotherapy drugs which took another
30 minutes. One hour after chemotherapy is finished, another EKG. All of these EKGs are required by the protocol since one of the drugs relatives causes some heart problems. After the first round is over
they will only be done weekly. Yay!
Wow…..what a long day. We were in this hospital for over 11 hours! Exhausted! In case you are wondering what a PICC line looks like here’s a pic!
Started the morning off with a bone marrow biopsy in out-patient surgery with sedation. This is the only way to have one of these! Propofol is good stuff….you are out instantly and then awake instantly with very little side effects or grogginess. This was Michael Jackson’s drug of choice, but unfortunately his doctor did not monitor him closely enough and he overedosed. Don’t understand wanting to try this drug at home!
Feeling pretty good about everything except my health insurance. Sometimes they don’t like to cover Phase One of a research trial. After hearing it would take up to 10 days to get approval, they came through in the afternoon – just in time for me to get my 3 EKGs done and approved and the consent form signed. We are set to start treatment on Monday. This is when we decided to drive over to Tyler to visit my parents in their new home on Lake Palestine next door to my sister and brother-in-law, Jan and Bill, for the weekend. It was a beautiful drive over, we took a new route through Crockett this time. It was so wonderful to see Mother and Daddy, Jan and Bill, and hang out for the weekend! Watched football and chilled. Great weekend! Here is a picture of Mother and Daddy’s new home:
Hey Everybody! I’ve decided to start blogging my Houston experiences to keep my family and friends updated while I am away from home and also as a type of journal and therapy for me!
This is my first attempt at blogging, I’m definitely a newby!
Got to Houston just in time for my appointment with my Doctor, Dr. Garcia-Manero at MD Anderson Cancer Center. We also met my research nurse, Sheryl, who is in charge of making all of my appointments, making sure we follow the trial exactly, and any other issues. Dr. Garcia-Manero spent a lot of time with us, explaining my treatment options. We decided to go with his recommendation – a research trial of an investigative drug that he developed (belinostat), combined with an approved drug used currently to treat multiple myeloma. Used together they will target a certain protein cell that causes my disease, myelodysplastic syndrome. Ultimately I need a bone marrow transplant AKA stem cell transplant, but those work much better when you are in remission…..so we are working on getting into remission! I have learned that my Dr. is considered the #1 foremost expert in the WORLD for myelodysplastic syndrome! That’s exciting to me! I am definitely in the right place! Sheryl told me he spent several days studying my case, and in fact called me at home on Saturday night during Labor Day weekend to give me my bone marrow results. He is from Spain and I am guessing mid-fortyish!
Here is a picture of the hospital. It is a huge place – it is impossible to get a good pic!