Five years ago today I was diagnosed with melanoma. The phone rang while I was sitting at the kitchen table creating picture labels for dresser drawers with Joey and Abby. I had NO idea what was coming or what the diagnosis meant. Joey was 5 and Abby was 3. I had Danny come home that day at lunch to cry on his shoulder in fear. I knew melanoma was “the bad skin cancer” but not much else.
It’s been five years, seven surgeries, six biopsies, ten treatment approaches, nine chemotherapy and immunotherapy drugs, tumors come and gone through treatment and surgery and two years of dealing with brain tumors and their aftermath. We’ve come a long way, baby! And I know a lot more about melanoma and its treatment now.
Yesterday, I was speaking with a counselor who is working with our family. As I explained some of our back story to her, I told her that when I was diagnosed with melanoma in 2009, my kids were 3 and 5 years old. I was 29. When I progressed to stage 4 a year later, my goal and focus was being here to get Abby through kindergarten. When I reached that goal my focus became to see the kids finish elementary school. After some big bumps in the road (brain tumors are BIG bumps) I began the clinical trial I am currently in. One day about a year ago after repeated good scans, I remember looking at Daniel and saying, “I’m going to see them graduate high school!” Today my hope is to see them married and rock my grandbabies.
Today, the FDA approved the drug that is saving my life. I am so excited and thankful for this medication and that is will now be available for my melanoma friends. The trade name announced today is Keytruda. The medication name is Pembrolizumab.
There are more anti-pd1 drugs being developed for multiple cancers which are literally changing cancer treatment and outcomes. What an amazing day to sit and take a deep breath and know that my friends now have access to this drug. History was made today.
It’s bittersweet as I remember MANY friends whom I have loved and lost along this road. From my diagnosis in 2009 to today, 5 new drugs have been approved for stage 4 melanoma. In 2009, the offerings and success rates were dismal. But, I also feel such hope for the future. For my friends currently struggling, for my friends who will be diagnosed in the future, and especially for my children. Today brings hope and joy!
Thank you God for the doctors, researchers, trial patients, nurses and financial donors who allowed this to happen. We have not yet won the war against cancer, but today was a big step as a new arsenal was made available to those on the frontlines.
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!
“Welcome to$uhe University of Arizona Sancer Center N Campus”
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.
Assimilated. Resistance was futile.
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!
Ready to have my port accessed, labs drawn, doctor check in, and infusion! Watch out cancer, here I come!
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 article claims that wearing sunscreen and avoiding the sun causes cancer. It has exploded on the web today. What do I think? Well, the easy answer is to quote my friend Timna’s (Respect the Rays) response to it.
“Total Fucking Bullshit.”
I alsofind this spread of misinformation sickening. Since my diagnosis I’ve had lots of misinformation passed on to me. Much of the melanoma community is quick to respond “I tanned and have melanoma!” I understand this gut instinct. “Learn from our mistakes, we cry!” But, let’s talk strategy in examining and refuting articles like this. While personal stories are incredibly compelling, we need to be aware of fallacies in our arguments AND in the crap like this that is promoted online. I could name a number of friends who have melanoma and tanned. I am a person who didn’t tan and has melanoma. How do we draw a scientific conclusion based on this testimony?
I could also tell you I have friends who didn’t use car seats when children and they survived. Sure, but are the children who died in car accidents here to tell their stories? No. This isn’t a perfect example for melanoma and tanning but it shows the flawed logic that is sometimes used with personal experience arguments.
Instead, let’s see if we can refute this with a more methods based, scientific approach. Specifically for this article.
First let’s check the source links at the bottom of the article. The source is here. When we check the link, the article linked doesn’t cite the study. Merely mentions it with an affiliation. IF this is information found in a real study, why is the original study not mentioned?
Is realFARMacy.org an unbiased source? No, clearly based on their URL, they are against conventional medicine, which means they most likely distrust the FDA which regulates sunscreens. This bias should be recognized, especially when realfarmacy.org claims to cite scientific studies. How do they trust some and not other studies? My guess is they are cherry picking their facts to support their claims.
The actual study can be read here. Good luck. In my reading, I was surprised to learn that the statistics related in the original article aren’t based on death from melanoma or skin cancer. It is based on all deaths without considering cause. The study also discusses vitamin d deficiencies in those living further from the equator (like in Sweden) and that this may play a role compared with high UV areas like Australia and the southern United States. Was this mentioned in the tabloid-like headline of the original article? Nope! All in all the study seemed fairly subjective. Survey based, threw out previous cancer cases, didn’t include risk factors for melanoma such as red hair in some of their statistics. Seem like fishy evidence on which to base a conclusion to you? Sure does to me.
So does sunscreen cause cancer? This study doesn’t mention it. Lack of Vitamin D may contribute to mortality rates, but we can get vitamin d in safer forms than sunbathing and tanning beds.
I am planning on discussing more about how to discern claims about sunscreen and sun safety in future posts. Hopefully this information will be helpful in all areas of your life. I am not against holistic medicine.
I AM living 2 years beyond when I was expected to die because of evidence based medicine.
I will continue to be passionate about educating others to find good information and empower them to make the best decisions for themselves and their families! (This is my own personal testimony, biased based on experience, but meant to show my passion to educate others!)
For a fun video about fallacies in thinking and how our brain likes to trick EVERYONE into seeing patterns which aren’t really there, check this out!
“…maybe you can find some evidence that say’s you’re right, but you’ll have to ignore a whole lot more evidence that says you’re wrong. When we filter evidence to support that conclusion and ignore what disagrees, we are victims of confirmation bias.”
“And that’s why science was invented. A way to fight the human tendency of assuming that what we see is what’s true. Instead of starting with a conclusion, and filtering out all the data that doesn’t agree with it, science starts with an explanation and does everything possible to prove it wrong.”
“Science, above all else, requires a desire to disprove ourselves. It’s a sharp tool that we use to poke holes in our ideas, so we’re sure that they’ll float. And unless we do that on a regular basis, our princess will forever be in another castle.”
Update: Since I posted, other reputable sources have also released responses to the original article. Check them out if you want further information.
A very quick update before I get ready to head to The Cancer Center again this morning. Yesterday went about as well or better than I hoped. Having the port placed was slightly more traumatic than I anticipated. Mostly because the schedule was messed up and I was in the OR all prepped on the cold, cold table for a LONG time before the Dr showed up and they gave me the “I don’t care what you do” drugs. I actually have a double port which is allowing my chemo to go faster! The other patients in the room with me yesterday were jealous and my nurse was delighted.
The facitity and nurse were awesome yesterday. The other patients were very warm and sweet too. One of my pre drugs is benedryl, so I slept for most of my infusion. I’d guess that will be common. I got the shakes as we left, but they went away quickly. I was still pretty tired, so I went straight to bed when we got home. At home, my stomach got upset and I got sick a couple times. We got home at around 5 and it was bad until about 8:30 when Danny brought me my next dose of pain killers and benedryl. After that I felt better, snacked a little, and fell asleep and was out most of the night. I’m feeling good this morning, other than my port being sore.
Thanks to everyone for the prayers. Today my treatment is at 9. Danny will bring me home afterward and I’ll be on my own for the afternoon. (Hopefully I’ll just sleep.) The first day is supposed to be the worst and it’s behind me! Hurray!
