I have one super happy family! Check out Daniel’s story of the adoption!
I felt so great after my infusion of anti-pd1 therapy on Thursday! Came home and enjoyed the family and got some chores done. On Friday I stayed busy and had a girls night out with some of my besties. This morning, three days post infusion, I felt I’d been hit with a ton of bricks. I saw the signs coming last night, drinking tons of water but it wasn’t absorbing. Then at one point while out with friends, I felt fatigue and a bit of light headedness wash over me. I also didn’t finish my gelato from Frost- a sure sign of impending doom! Once in bed, I realized my leg that swells with lymphedema was very swollen.
So, I shouldn’t have been surprised when I woke up swollen, sore and exhausted! I slept most of the morning and more this afternoon. I’m so glad Daniel is home to carry the load. He takes such good care of us. The family is out on a walk and I am still resting. This is the new normal and I wonder if it will ever really feel normal. I am so thankful that most days now are good days so the bad ones stand out!
It’s been a month and today I’m back for anti-pd1 cycle 18, week 64! No stripping today, sorry folks.
I’m currently shivering under my blankets in infusion room. Brr! The liter of saline makes me chilly! Of course, there is a “popsicle patient” across from me (TH-302 trial) with ice packs in his armpits and groin. He’s also sucking on ice chips. I’m going to keep my mouth shut about being cold! It’s all about perspective!
I had to laugh at my pager this morning. I doubt this is the message the cancer center wants to send about their competency! Good thing I am an experienced patient and know this is not a reflection of the care!
I had a brain MRI yesterday and it looked good! My trial nurse went out of her way to call me with results yesterday so I didn’t have to face the anxiety waiting for my appointment today. I’m thankful for her understanding heart.
Today’s labs included another to-do about how tiny my dual port-a-cath access is and how deep the bottom section is to access… it needs a longer needle… blah blah blah. It’s interesting how much nurses vary in their assessment of my port. I am learning which hills to die on with port access, but when to let the nurse’s instincts and concerns lead the way. A longer needle has never really been necessary, but if they feel more comfortable with it, I’m not going to argue. It does seem to cause trouble if I lie back and they try to access the port. I believe this is because of tissue moving when I’m reclined which interferes with the port access. So, I request to be upright when it’s accessed!
It did eventually get accessed, the seven tubes of blood drawn and after giving a urine sample-which prompted a tweet to the cancer center about needing a hook on the bathroom door, I was on my way! (Imagine me, laptop bag, coffee and urine sample cup in a room with no shelves nor hooks. Wait. Don’t.)
I saw my nurse practitioner for a straightforward visit. Discussed allergy meds and she said my nose is a little inflamed with the new dog. Doh! She recommended an over the counter nose spray. Allergy meds will not interrupt my immune system. She explained the histamines they treat are not part of the cellular immune process which fights cancer. Oh college Martha, you should have taken cellular biology!
I’m now finishing up my liter of fluid and about to get my lovely anti-pd1 (MK-3475) Then I’ll be out of here! Dose 18 done! Hi-yah! Take that melanoma!
Tales from the infusion room:
The group infusion rooms at Arizona Cancer Center hold four chemo La-Z-Boys, one in each corner. I was sitting on my side of the room during a recent visit and overheard the husband of a new patient asking the chemo nurse about a port-a-cath for his wife.. He was asking where they were placed and for details about surgery to have it placed. (For some reason my inclination is always to say my port was “installed” rather than placed. We are Borg, prepare to be assimilated!) He asked about the benefits and care for the port.
The chemo nurse kindly gave him great information, but sometimes it’s good to hear from another patient. (And sometimes I like to hear myself talk!) So, as this sweet couple in their late 60′s get up to leave her first infusion, I pipe up and get the husband’s attention. I told him that from my perspective, a port-a-cath can really make treatment easier and it’s saved my veins, which were building up scar tissue before I was even diagnosed with cancer. I asked if he wanted to see what it looked like. He was grateful for the input and said sure, he would be interested.
The wife is in the bathroom now, so I am only interacting with this gentleman. At this point, I look down and realize I am going to have to unbutton my henley and pull it down. I know I won’t be exposed, but it won’t appear that way to this man. I look over at Daniel, he raises his eyebrows at me, then I carefully unbutton, and show off my port! Anything in the name of advocacy!
It was worth it. I remained clothed (somewhat) modestly and the man and his wife thanked me for the perspective. Cancer is scary! We have to share our stories!
Here’s another post I’ve shared about my adventures with my Port-a-cath!
“Play is often talked about as if it were a relief from serious learning. But for children play is serious learning. Play is really the work of childhood.” - Fred Rogers
Not pictured in our summer school curriculum: swim, Mr. Roger’s Neighborhood marathons, weekly movies, lunch with Daddy, making jello, crafting, and going on playdates. We love summer!
Well, I could have told them that!
I submit, as evidence, my Facebook status from July 2.
Oh. My. Word. Today I realized I forgot an important errand yesterday so rushed to do it this morning, forgot I’d invited my brother and girlfriend over for dinner until 45 minutes prior, locked the kids and myself out of the house on the way to the pool and left the back gate unlatched while dog sitting so the dogs got out of the yard. Thankful for the end of the day and grace from family. If anyone sees my brain, let me know!
This is a little louder than my normal footwear, but it was fun for a day spent at Dak’s pizza and games with three nine year old boys. We all ate pizza, and the boys celebrated Joey’s upcoming 10th birthday with Xbox gaming while I watched USA
I am finding some fun ways to wear compression garments, although they are all HOT when it’s 108 degrees out!
Shoes: Pluggz (bought new at Twice as Nice- $12!) SO COMFY! (no, I don’t know why only one shoe has a seam.) I can’t find my pair online, but here is a cute similar version. Pluggz Women’s Iris Ballet Flat
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Today was an epic three novel day! My favorite kind of summer day. Definitely feeling the fatigue from my last infusion, so I gave myself a rest day and made the most of my time with my Kindle! The first two novels weren’t noteworthy (romance trash I’ll delete and try to forget.) But today I decided to tackle “The Fault in Our Stars” by John Green. I’d been quite nervous to read this book considering I try my very best to steer clear of pediatric cancer stories whenever possible. I experience an abundance of pain and sad stories because of the cancer communities I participate in and although I do follow and actively support the parents of a few pediatric melanoma patients, I do avoid intentional exposure to those stories. My mama/cancer patient/selfish heart just can’t deal.
I am so glad I risked reading “The Fault in Our Stars.” Although it is about pediatric cancer patients, I found myself relating to them as patients much more than with my mom heart. So much of the worldview and frustrations expressed by the characters in this story resonated with me. From facing a terminal diagnosis turned to cautious optimism due to new drugs, impatience with cliches but understanding that others are doing their best to comfort. Identifing with the fraternity of patients, despite differences in outcomes and diagnosis. And especially fear of hurting loved ones due to the diagnosis hit home. Even the frustration with those who attempt to lead support groups but are maddening in their probing. The annoyance at the warrior mantra and “winning” a battle when while we would like to claim credit for victory, much of this journey is beyond a patient or doctor’s control. And especially the frustration of the seeming randomness and unfairness of the disease and success of treatments. All struck a deep place in my heart and mirrored some of my own internal dialogue.
I was also surprised that I made it though the book with most of my emotional detachment intact. I shed a few tears as I read but more for myself and fellow patients than the characters in the book. Am I becoming scarred to the pain of this disease? Perhaps, but more likely I am too intimate with stories of friends who have suffered to die and suffered to live facing similar circumstances to these characters. It was those friends’ stories along with my own which brought tears as they echoed in the book.
I would certainly recommend the read to anyone. You might need some tissues handy as the characters are lovable and it is a book focused on pediatric cancer!
Blame the chemo-brain for my not recognizing this earlier, but I realized when I finished the book, John Green is the face of one of my favorite vlogs. You should check out his Youtube Channel Vlogbrothers! Once this connection clicked I wasn’t surprised at all that I loved the book!
Last Thursday (June 19th) I had dose 17, week 60 of the Merck MK-3475 trial drug. (AKA Pembrolizumab, formerly known as Lambrolizumab, anti-pd1, melanoma immuno-therapy, my miracle drug)
I had a CT scan and saw Dr. Cranmer last week for scan results, which looked fabulous. Everything continues to shrink! We spent most of the visit geeking out and comparing notes about ASCO (American Society of Clinical Oncology) Annual Conference and the melanoma conference I’d attended in May. Nice to just chat about shared frustrations in the need for patients to see melanoma specialists and not being given treatments in an order that seems logical (at least to us….)
This appointment, since we knew things were looking good, Daniel stayed home with the kids while I went to my appointment alone. Labs look great! My LDH has dropped again! I am well within the normal zone for this tumor marker in blood.
I saw my nurse practitioner and the trial nurse coordinator. This was a quick visit since everything had been reviewed last week.
I headed upstairs for my liter of fluids and infusion. It was a quiet day in the research room. I did freeze sitting under an AC vent with the cold IV drip so I got my first heated blanket wrap in a while. Feels a little odd when it’s 103 degrees outside!
I went home and slept all afternoon which is unusual for me. Usually when I have fluids with treatment, I am not as wiped out. Perhaps the heat just wiped me out. Getting into a 130 degree car is probably enough to suck most of that liter of fluid right back out of me! The weekend was tolerable, although the post infusion thirst is insane. I also am fighting my usual rash and a slight headache. My one new symptom this month is dry eye and some slight redness since the infusion. It’s always an adventure, but SO worth it for amazing results!