Reading messages from other melanoma warriors during the Pass the Parasol campaign.
A guest post by my sweet daughter, Abigail Bishop, age 7. I didn’t edit her writing. She refers to “mela-no-mas” because of our melanoma walk team name. We just don’t have the heart to correct her because it’s so stinking cute! I also love that I asked her to tell me “what it’s like when your mom has melanoma.” She came up with the term “my experience” all on her own!
My experience with having a mom with mela-no-mas is very scary because i think she will always have mela-no-mas. I really hope my mom stops having skin cancer. My mom has skin cancer because she had a mole that changed on here back. To avoid skin cancer you have to get skin checks once a year and if you see a mole that changed tell your doctor.
Art Abby made for me after the melanoma walk. Nov 2013
When Mom has melanoma your friends will come walk with Team Mela-no-mas!
I am always sunsafe on safari!
Even if your mom has melanoma, she still might take you on your first trip to Tiffany and Co to try on jewelry!
May is melanoma and skin cancer awareness and prevention month. The melanoma community is working to do some wonderful things for education and awareness. Last year I was blessed to have many people honor me by wearing black on melanoma Monday and it felt so good. This November at the annual local melanoma walk I had a large team of family, friends and co-workers supporting Team Mela-NO-mas. I feel like after almost five years of this journey, people are understanding melanoma better. They know it’s not “just” skin cancer. It first invaded a mole, then my lymph nodes, then my lungs and even my brain.
At this point, I am healthier than I have been in years and have real hope that I have a long future dealing with melanoma in more of a chronic disease relationship than a fatal disease. BUT that does not mean that I haven’t narrowly avoided a death sentence and may very well end up fighting for my life again. This fight has changed me in ways I never thought it would. I’m not sure if I will ever be able to communicate them. Daniel and I joke that I am “past my expiration date.” And boy am I thankful for that!
But this journey has left me restless. I am still frustrated that people close to me don’t “get it.” I see friends who have walked this journey at my side not wear sunscreen or complain to me about tan lines. It’s pretty obvious when I go to the park with them and they put sunscreen on their kids (just because I’m there) none of them are in the habit of applying it daily. Celebrating tans or complaining about tan lines developed on vacation is like rubbing salt in my wounds. And while I try to find peace with their choice, to be honest, it feels belittling to my journey. There ARE things they can do to protect themselves and their children from this disease and when they don’t take those steps, it’s tough not to take it personally.
For all my frustrations, there are people getting the message. I do have friends who diligently slather sunscreen on their kids and themselves daily. I have friends who have stopped tanning because of my story. I have friends who have had skin checks and avoided a late stage diagnosis like mine.
This month there are some wonderful campaigns going on. There are clever slogans and moving videos. I will be sharing many of those. Many of my fellow warriors are sharing their own stories. But this year, I’m not asking you to wear black for me. I’m asking you to learn from my journey to hell and back. Change your habits. Protect yourself from the sun. Check your skin. Check your kids. Make a derm appointment. Work to change your perception of a healthy glow to undamaged and protected skin. Try a new sunscreen to make it easier to wear. Do one thing for YOU and your family. I’ll wear black for me. If you wear black, do it for you, but don’t make that the only thing you do.
One year ago today, on January 23, 2013, Danny took me for an MRI which we thought was going to be a breeze. I needed it to qualify for a new clinical trial testing Merck’s Anti-pd1 drug which was showing VERY promising results. I was set to be the first patient at my cancer center on this trial. Emotionally, we were feeling very positive at the possibilities offered with this new trial although we were a bit nervous about ending up in the chemo arm of the trial. I felt good after the MRI, so my sweet husband took me to Jerry Bob’s for breakfast.
One year ago today, just as we were finishing eating, my cell phone rang and it was my trial nurse coordinator asking if we were free to come in to sign some paperwork she had just figured out we needed to fill out. (Liar, liar, pants on fire! We won’t fall for that trick again!)
One year ago today we were ushered into an education room where my nurse practioner (my oncologist was out of town this day), trial nurse and oncologist’s nurse sat us down to tell us the MRI had shown two tumors in my brain. I needed to treat these and would not be eligible to begin the trial.
One year ago today I had a meeting that afternoon with Dr. Stea, the head of radiation oncology at UAMC to plan the Steriotactic Radiosurgery I would have within the week which would use seemingly Star Trek lasers to kill my tumors from the inside out with just one treatment. We also planned for me to also began two chemotherapies (oral Temedor and Avastin) the very next day.
One year ago plus a few days, I responded beautifully to the treatments and got into the trial I originally hoped for just a few months later than we planned. And although my immune system attacked the dead tissue in my brain this September and 2013 seemed to be the year of brain trouble, I have not had any new tumors, brain or body, since January 23, 2013! One Whole Year! The anti-pd1 trial has stabalized and is shrinking my tumors. I have been on this treatment longer than any other I’ve attempted (excluding the year long interferon treatment I did when first diagnosed.) We have so much hope that this stability will continue.
One year ago today was probably the scariest day of my melanoma journey so far. And although the emotions of this journey continue to be a roller coaster, I am a walking miracle today with stable disease. God has been good to us. God would still be good if I had died 6 months or even 3 years ago. He would still carry our family; but we are very thankful for our sweet family of four being able to hike this weekend and enjoy the beautiful 80 degree Tucson weather in January! Thank you for those who have stood with us in prayer and friendship.
“Everyone hates steroids and you just have to tough them out.” seems to be the theme I hear from doctors and other patients these days. Perhaps I have been whining too much! Oops!
Today was my every 3 week appointment for my clinical trial. I started by being called back to have labs drawn within 2 minutes of checking in! This NEVER happens! I have a port-a-cath in my chest into which they put a needle to draw labs and give me IV treatments. The needle stays in for my appointment and I have it removed after I am finished with all my appointments and treatments for the day. It saves my arm veins from multiple sticks as well as prevents damage and pain to my veins with some of the tougher medications. So, I see a RN rather than a phlebotomist for labs which takes some time with steralization of the site, removing the numbing cream, figuring out which of the two ports is being accessed (my port is a dual lumen and both sections need to be regularly flushed.) And… I had a point to talking about my lab visit today, but I seriously can’t remember it now. See? Steroids suck. Oh well, here’s a photo of a port-a-cath to go along with my pointless rambling.
Next I was seen at the cancer center today by Lois, the wonder NP. I really like her. She is smart, kind, practical and didn’t palpatate my swollen belly out of mercy! I alternate seeing her and my oncologist. Lois watches me medically, but she also is a great help with helping me have the best quality of life possible. I have gained a significant amount of water weight (10lbs) in the past two weeks, plus an additional 15 lbs added from the two months I’ve had a ravenous appetite. Thanks for that, steroids! I think Lois knew palpitating my belly was a bad idea when she saw I had pulled out the ol’ pregnancy “rubber band the pants instead of buttoning them closed” trick for the day! Keeping it real here, folks!
The great news I got today from Lois is that over the next 10 days, I am changing to a lower dose steroid (I’ve been on Dexamethasone and am switching to Prednisone.) AND reducing my dosage until I am finished with steroids entirely!
I have not been allowed to take Anti-pd1 (the clinical trial drug that has been WORKING!) since the brain symptoms began in September and I have been on the steroid. The anti-pd1 revs up my immune system and the steroids work to calm it down, so they are counter-indicated. We WANT my immune system working on my tumors, just not going crazy on dead tissue in my brain. (insert joke about dead brain tissue and intellect here.) Assuming all goes well with weaning off the steroids, I should be able to have my 9th infusion of anti-pd1 on December 2nd! I am SO excited to get back on track with the trial and kicking melanoma’s ass! SO SO SO happy to have this plan in place and a light at the end of this brain mess tunnel!
Another example of my absent mindedness of late at the end of my appointment, it wasn’t until I got into the car and felt the port still accessed when I put on my seatbest that I realized I’d left the cancer center without returning to the lab to have the needle removed! Thankfully we hadn’t left the parking lot! Things like this have been happening a lot. I had a friend remind me I’d left a Facebook conversation mid-chat a few days ago and completely forgotten about it among other silly mistakes due to not being able to think super clearly. I cried this morning because I couldn’t find a medication and my bra. I am tired of being absent minded! SO, if I have not responded to something I should have or forgotten to do something or forgotten your last name at the melanoma walk, PLEASE forgive me. It is not because I don’t care. My brain just seems to have fallen out. If you see it, send it home!
All in all it was a really good appointment and day. Steroids suck, but I can see a finish line!!!
A couple prayer requests if God leads you to pray for me.
First, that my brain and body will cooperate with the steroid wean. Steroids are tough on the body and I’ve been on a fairly high dose for a good amount of time. Of course, I am hoping to get off these darn things ASAP, so prayers for a smooth transition are SO appeciated.
Second, that the Anti PD1 will kick back in and continue to work to reduce my existing tumors and prevent any new ones! I have seen some signs as the steroid had been reduced that the Anti-pd1 may already be kicking back in which would be incredible and not unlikely based on how it seems to work in other patients. Yay for Anti-pd1!
Third, that this brain swelling stuff will NOT return! We need my immune system working hard from my neck down on tumors in my body, but my brain needs to stay calm, remaining tumor free is good, but attacking tumors that are already dead and attacking with a vengance is something we’d like to avoid!
Fourth, that God would provide an excellent melanoma specialist for my cancer center. My oncologist is overworked and needs help! I’ve heard rumors they may be hiring someone soon so please pray for the perfect person to treat the many Arizonans who face melanoma and are treated at AZCC.
Thursday, October 31 was a wonderful, lengthy appointment with my oncologist. We discussed a LOT of things but what stuck out the most, and then my trial nurse repeated after he left was that I am currently “phenomenal.” This is somewhat paraphrases, but essentially my oncologist told me, “Two years ago, things weren’t looking too good for you and the median life expectancy at that point is 7 months (thankfully he didn’t mention that then!) but today you are doing phenomenally and I expect you to be my patient for a long long time.”
The next focus and goal for my treatment is continuing to step down the steroids and get back to infusions of the trial drug toward the end of November. In the meantime, I skipped a second infusion #10 because the trial drug would ramp up my immune system and the purpose of the steroid treatment is to calm down my immune overreaction in my brain (see auto immune meningitis post.) We also discussed a variety of options I have if I cannot successfully get off the steroid and have to leave the trial, but for now things look really great that I will be off steroids and back on anti-pd1 at the end of November. Happy birthday to me! I am honestly SO excited to get back to it! I was the first appointment of the day and it felt great to walk out of that building with good news.
Danny and I then had a lunch date and went paint color choosing for the outside of the house. I think we’ve decided so now we just need to write the check. Ugh! Our little house is going to look so nice, though!
I am in a wonderful group on Facebook made up of moms from the kids’ school. There was discussion about when the annual costume parade would be so I asked if someone would be willing to cheer as my kids passed and snap some photos because I knew I’d be at this appointment and miss. The kids came home full of excitement and both mentioned that a couple of the moms took pictures of them. I think they felt like celebrities! So sweet and such a blessing for my heart to know my kids were loved on after both expressed disappointment that I couldn’t attend their class parties. It’s tough to ask things like this sometimes because I worry that I might come across a) as an attention whore who is bringing up the cancer thing AGAIN or b) the conversation killer who is bringing up cancer again ruins the conversation about the times of parties and parades. I don’t mean to do either and my hope is that my friends know me well enough to keep moving in conversation and planning (while also doing what bossy pants me requested, of course!)
Danny and the kids carved pumpkins that night and went trick or treating. I was pretty tired and ended up having a focal seizure. I wasn’t on a therapeutic dose of anti-seizure meds, so I knew this wa s a risk. I was reading and all of the sudden the words turned to greek letters. I had no idea what they said. I was aware enough to call Danny over and verbally describe to him what was happening. It was odd but intriguing. Put a bit of a damper on the Halloween celebrations, but I think I will just up my seizure meds to a therapeutic dose and be fine. Call in to my neurologist and waiting for a call back.
Today is Danny’s 36 birthday! Happy birthday my love! We met at a New Year’s Eve Y2K party for which the favors were flashlights I especially remember meeting Daniel because about ten days prior a good friend had said out of the blue and said “Martha, someday you are going to marry Danny Bishop!” I replied with a “Huh, that was kind of random.” But the name stuck in my head so when I was introduced to a Daniel Bishop at the Y2K party, I took note. Yes he was cute! We didn’t begin chatting online for a few more months. But once we did, AOL IMs flew fast and furious. It was a nice way to get to know someone and crushes quickly developed. I was going to school in Flagstaff while Danny was working in Tucson. One night I was upset about something and Danny asked for my phone number and I would not give it to him! I wasn’t intentionally playing hard to get. I just didn’t want our first phone call to be me crying. Daniel was exasperated but patient. A theme for the years to come! We went on our first date (my first date ever!) while I was home for Easter break. We officially began dating/courting/serious (you might have been youth in the evangelical church in the late 90’s if you followed the courtship guidelines of “I Kissed Dating Goodbye“) On June 5, 2000, We had our DTR (define the relationship- another late 90’s youth group phrase) and decided to begin dating with the intention that we were looking at each other as a potential spouse. Oh how serious we were! We got engaged in November of 2000. And our wedding was June 2, 2001. We were babies. I was 21, Danny was 23. But, it was the best decision I’ve ever made.
Daniel is my rock, I still have a major crush on him (He looks like Matt Damon! Yum!) He is eternally patient with me, even when I blab at him for hours or don’t live up to domestic standards my name implies. He is THE hands down smartest person I know and is not only talented intellectually, as a web designer, writer, artist and in a million other ways at work and home; he is socially brilliant as well. Smart and kind and I haven’t yet met a person who doesn’t adore him. (Back off ladies, he’s MINE!) He adores our children and the best and most selfless Dad I know (and I am picky-I have a phenomenal Dad.)
In addition to today being his birthday, November is Care Giver awareness month in the cancer world. From Sept 17, 2009 when I asked Danny to come home and hug me because the dermatologist had called and said my mole was malignant melanoma and none of us (Danny, the dermatologist nor I) knew what that meant except that it was scary, to sitting with me though hellish weeks in the hospital getting no sleep, to playing bad cop when people aren’t looking out for my best. Our marriage and this cancer journey have been quite a ride and Danny has NEVER backed down or taken a break from the unwavering support he has given me. I am SO blessed and lucky to have him walking this journey with me.
Daniel, my words fail me. You are my favorite and I say yes every second of every minute of every day for the rest of our long lives. I pray you are overwhelmed with love today as we celebrate you.
Tonight I had the honor of being a guest speaker at the local Cub Scout Pack Meeting speaking about sun safety! We started out by talking about skin being the largest organ on our body and that it needs protection, especially from our desert sun! I grew up in the desert and wore sunscreen to protect my skin in the summertime when I would swim, but I didn’t protect my skin in the winter. What happens if we don’t protect our skin? We can get a sunburn, ouch! But even worse, our skin never forgets the damage the sun does to it. Our skin isn’t very good at healing from sun damage. It remembers being hurt. A few years ago, a spot on my skin changed. I found out I have a nasty kind of skin cancer called “melanoma.” Lots of grownups get tricked and think skin cancer can just be cut off. Sadly it can’t. The bad skin cells grew down into my body and try to take over my insides like weeds! I have to take lots and lots of medicine to try to stop the weeds. It’s not very fun. They make me tired and grumpy sometimes. I hope that all of the cub scouts will take really good care of their skin so they don’t get melanoma! I have three ideas to help protect your skin!
SLIP on a shirt. When you are swimming or outside, make sure you wear a shirt with sun protection in it. A plain while tee is the equivalent of SPF 7 and does not offer enough coverage alone. A wet white tee is only SPF 3! So, check the labels of swim shirts to make sure they have sun protection built in. These are widely available during swim season at most retailers. They also don’t wear off in the water or with time and you don’t have to worry about missing spots while putting on sunscreen! My kids LOVE that I don’t have to rub cold sunscreen on their tummies and backs!
SLOP on sunscreen. Use a lot, don’t miss a spot! Make sure it is at least SPF 30 or above. Read the directions and make sure Mom and Dad read the directions, it needs time to start working before you go outside! Sunscreen is only water resistant for 80 or 40 minutes at a time, so check the label. It needs to be reapplied often! And be careful to get the tricky spots like the back of your neck and tops of your ears!
SLAP on a hat and sunglasses. This gives extra protection for the tricky spots that are easy to miss with sunscreen. The boy scout hats are a good start, but if you are hiking, try a wide brim hat to protect your ears and neck even better! Melanoma can grow in your eyes, so sunglasses are important to protect your eyes too!
You are invited to walk with Team Mela-no-mas in the Tucson 2013 Melanoma Walk! No mas means no more in Spanish, so our team name means no more melanoma! It is a family and dog friendly mile and a half walk. You can register to join us at Fight Melanoma Today. If you join our team, please email me and let me know what size t-shirt(s) you would like!
It is with a joyful heart and thanks to God I share that my scan results were wonderful! Three of my tumors are stable in size and four are SHRINKING! The one remaining shrunk in length, but grew a small amount in width. Nothing indicates it won’t be shrinking all around by my next scans. Also, a blood marker which indicates tumor activity continues to drop and is now in the normal range.
My brain symptoms continue to improve and we have a lot of peace that they will resolve without giving me more trouble. I also followed up with my surgeon today because my wound on my back from surgery 6 weeks ago has sprung a leak! He is not concerned and though it may take longer than normal for the spot to heal because the area was irradiated in 2011, it is healing well and having the fluid buildup behind the wound removed will encourage healing.
We are so excited and encouraged. It has been quite the journey over the past 4 years! Thank you SO much for in prayers and support we will never be able to begin to repay. We would still love for you to join us for the Melanoma Walk on November 2! You can sign up to join Team Melanomas by clicking the link below.
Praise God for hope, prayer and anti-pd1!
I was up all night with an ocular migraine (we hope.) My brain doctor is going to meet us in the ER at UMC. Please pray it’s nothing and I can get fast relief. This is a pain like no other.Thankfully I see the head of the dept. Pray for Danny too as I am mostly out of commission communication wise. Last night there was a point I couldn’t respond to him orally. A migraine is much preferable to a brain tumor and I seem to have ALL the symptoms for a bad ocular migraine. Brain tumors don’t hurt, though. Oww!
Bragging… life is SO much easier and pleasant when you aren’t in constant pain! Today I got 3 loads of laundry folded, actively did homework with the kids, took an awesome nap, held a “service” and buried a pet fish with a child, brought in the trash can, took trash out and am making dinner for the 3rd night in a row!!! I know it doesn’t sound like a lot, but it is huge for me. Praise God for this new quality of life!!! Scans next week and praying I can continue on Anti-pd1 and keep enjoying life for awhile.
