Forgive the cross posting, please! I attended Parent Information Night tonight. My kiddos have fabulous teachers this year! I am excited for the possibilities the new year brings! It was SO good to be out of the house for a bit.
I am feeling good. My pain level post surgery is much lower than my tumor pain was pre surgery. Hoping that without the tumors, my immune system will be able to focus on reducing some of the tumors in my lungs and my armpit!
Aug 9- Surgery update from Daniel on Facebook
Daniel Bishop: Thanks for all the prayers! This morning’s gone really smoothly. I’m surprisingly calm – can only be God’s peace. Mar’s been in a great mood and was making her surgeon laugh for a while before they took her into the OR.
It’s a good day. And she’s gonna finish it two tumors lighter!
Much later update from Martha: I was really nervous about coping with surgery pain while I was already on a pain management plan with a palliative care doctor. I actually woke up from surgery OUT of pain for the first time in a LONG time. Recovery was easy! Getting those tumors out was amazing for my quality of life. Almost NO pain from the time of the surgery! Amazing amazing difference in my quality of life! Yay!
Aug 8- Surgery to remove tumors tomorrow
My surgery is scheduled for 9:30 tomorrow. I am thankful for an early morning time, but with a report time that lets us get the kiddos off to school in the morning!
Do I Need Sunscreen When It’s Cloudy?
Do I Need Sunscreen When It’s Cloudy?
This is fairly horrible videography, but it gets the point across, I hope! The glare makes it seem brighter outside than it really was, but it was truly overcast. Oh, and I didn’t really get my shoes, so you’ll have to take my word for it that they are cute indeed! This is less than 2 minutes, so give it a watch!
The anti-pd1 detour signs have been removed!
About a week ago, I wrote a post called It was a good ride Lambrolizumab about my scans not showing the results I needed to stay in my Anti-PD1 trial. This was based on my oncologist’s once over of my CT scans and although he told me he still needed to do the math, I had most likely reached “the end of this road.” Danny picked up a copy of the official scan report the next day. (Thank you again Darling for dealing with the hassle of that process!) As I poured over the report with my pen, pencil and two highlighters, my scan results were much better than I had expected to see! I had mostly stable tumors (no growth or shrinkage.) A couple tumors that had shrunk a small amount. Horray! And one tumor that had shown quite a bit of growth (this is what caused my oncologist to come to the conclusion that I was done with the study.) I was pleased with the results overall and sad to be done with this trial into which had seemed to work at first and given us great hope.
Today I met with my surgeon about removing my painful surface tumors. One which I had hoped would be removed is too complicated to remove without concerns about long term complications in my leg, but the large tumor on top of it WILL be removed as well as one on my back. We went over the surgery consent with my surgeon’s intern. He needs practice…. ‘nuf said. 🙂 I was teary on and off during my appointment, primarialy because it was clear the surgeon wasn’t ready to discuss my long term plans other than surgery and I was frustrated that I hadn’t heard from my oncologist about discussing my next treatment or trial options. Danny finally helped me find my voice enough to request we speak with my oncologist’s nurse. As soon as she heard I was teary and worried about not knowing what was going on, she put the pieces of the puzzle together to realize their had been a bit of a communication failure. She made some calls to confirm prior to seeing us and then came to let us know that….
I STILL AM A PART OF THE ANTI-PD1 TRIAL!!!
My tears almost immediately changed from worried to elated as I raised my hands in the air celebrating this fabulous news! She let us know that with tumor growth, you can’t have beyond 20% growth in the “targeted tumors” that are being measured for the study. I had only 17% growth, so I am eligible to get two more doses of my drug and then they will repeat the scans and re-determine if I will stay in the study or not. I still will have the surgery to remove my painful tumors, so I feel as if today was a double win! The surgery has to be approved by the drug company who is running the trial, but the nurse we spoke with today was pretty sure my trial nurse had already gotten that approval. (She is on vacation this week, which is part of the reason for the communication breakdown.)
Thank you for everyone who prayed for us today! This news feels miraculous to me and I am so thankful to God for the hope this gives us! Now our specific prayer request is that my tumors would all begin to shrink and these next scans would show vast improvement! We will update with dates for surgery and the like once we have them. Next week may be a busy week. The kids begin school Monday, I get infusion #7 of anti-pd1 on Wednesday the 7th (I am still giddy that I can write that!) and my surgery will probably be on Friday the 9th! Whew!
Decisions and Possible Surgery
Tomorrow afternoon Danny and I will meet with my oncology surgeon to discuss having my painful surface tumor(s) removed. We would appreciate prayers as we communicate with him and also hopefully will be able to talk to my main oncologist about our plan moving forward. We want to make sure that surgery doesn’t prevent my entering any trials nor do we want to delay further treatment and allow melanoma to gain footing while I recover from surgery. It does encourage us that both of my oncologists (surgical and melanoma specialist) feel that my disease is stable enough for me to take a treatment break to have this surgery. We believe removing these tumors will lessen my chronic pain and improve some quality of life issues. Please pray for wisdom and clarity for both of my doctors as well as Danny and me. Also, please pray that my main oncologist would be available to step in and consult with us during this appointment. I am so blessed to be treated at my clinic where the doctors work so closely together. Thank you all!
It was a good ride Lambrolizumab (Anti-pd1)
One month ago I had my first set of scans since beginning my anti-pd1 trial. Those scans weren’t horrible, but they did show some slow growth in my tumors. My oncologist decided to allow me to receive two more doses of the medication and then rescan me after a month to see if my tumors continued to grow or if my immune system would kick in and the scans might show shrinking tumors.
Today I had my second set of scans and my oncologist called me with the results soon after. My tumors are mostly stable except for the one in my groin which has grown. This is the one that causes me to need pain killers all the time, too. Stinker! Unfortunately, although it is not official yet, it looks like this is the end of the trial for me. It is bittersweet because I did show an initial response to the treatment so we really thought this was going to be the drug that would be the solution for me. On the other hand, being out of the trial will allow me to have this painful groin tumor surgically removed. In the middle of typing that last sentence, my surgical oncologist called to set up an appointment with him for next week. So, sounds like that tumor is going bye-bye! Yay! I will most likely also see my main oncologist next week to decide what the plan is going forward. Continued prayers are appreciated as we make decisions about my next treatment. For now, Danny and I are going on a trip and I am under doctor’s orders to not think about cancer for the weekend!
FAQ2: Evaluating Sunscreen
While were at a birthday party at the park last week a friend handed me a bottle of sunscreen and asked me to look it over to see if it was something I recommended. This is a sunscreen I have recommended in the past, although since then I have developed more specific criteria for my sunscreen analysis and I thought I’d walk you through my thought process in evaluating this and all sunscreens!
The sunscreen she was using was Neutrogena’s Pure and Free Baby.
Image: Bicycling.com
The first thing I look for are the words broad spectrum, as this label shows. Broad spectrum means the sunscreen protects from both UVA and UVB rays. SPF only measures how a sunscreen protects the skin from UVB rays. I aim for SPF of 30-50. Anything higher can cause a false sense of security while you are getting no extra protection. It feels like false advertising to me and makes me question the product reliability. In fact, European and Australian sunscreen claims are capped at SPF 50! Neutrogena Pure and Free Baby isn’t too outrageous with their SPF 60 rating. This alone would not keep me from buying the bottle.
I always avoid the sunscreens my children and other parents love, sprays. I don’t do it to ruin your fun, I promise. I explain why I avoid sunscreen sprays in my first FAQ post. Neutrogena Pure and Free Baby is a lotion so it passes this step!
Another things to avoid when you are evaluating a sunscreen is the active ingredient oxybenzone. Oxybenzone is a potential hormone disruptor. I have also read it described as a synthetic estrogen. If you are interested in researching more about this, there is a plethora of information available with a simple Google search. I choose to avoid oxybenzone with my children because I fear hurrying puberty along!* Neutrogena Pure and Free Baby passes this test since it’s only active ingredients are zinc oxide and titanium dioxide.
The last thing I avoid in sunscreens is the inactive ingredient Retinyl Palmitate or Vitamin A. Vitamin A is a fabulous anti-aging ingredient but studies have shown that when it is used on sun exposed skin, it can cause skin tumors or lesions to grow MORE QUICKLY! Eek! Save the Vitamin A for night creams and avoid it in sunscreen! This is a pain to check for in sunscreens! It is often close to the bottom of the inactive ingredient list and in tiny print! I found this ingredient in too many sunscreens I checked a few weeks ago at my local CVS. It was VERY frustrating! I also noticed that different SPF levels by the same brand’s inclusion of Retinyl Palmitate varied, so it is worth checking each formulation if you prefer a certain brand. Neutrogena Pure and Free Baby does NOT pass this test. Why on earth they have an anti-aging ingredient that can speed up cancer growth in their sunscreen is beyond me. But, because of it this sunscreen has FAILED the Martha check.
As if to prove my point about formulations, when I went on Neutrogena’s website to link to their sunscreen, I looked at Neutrogena Pure and Free Baby Faces Ultra Gentle‘s formulation and with SPF 45 AND no retinyl palmitate in the ingredient list, it DOES pass the Martha check! The Pure and Free Stick seems to check out as well. So, there is a good alternative to the Pure and Free Baby we ruled out tonight. Often the “faces” formulations are more expensive, so hopefully Neutrogena will change their formulation of the Pure and Free Baby soon!
To summarize, when evaluating sunscreen…
- Choose BROAD SPECTRUM and SPF 30-50
- Avoid sprays
- Avoid Oxybenzone
- Avoid Retinyl Palmitate
Hope this helps as you tackle the many choices of sunscreens available!
*I must confess that my beloved Blue Lizard contains Oxybenzone. We are trying out a new sunscreen now to avoid the ingredient, but we had made a decision that as high risk as our children are for developing Melanoma, it was worth the exposure to the ingredient. Especially since Blue Lizard is known for it’s staying power throughout the school day. The Sensitive and Baby formulations of Blue Lizard ARE oxybenzone free, however!
Not an ad. I purchased this product on my own dime. The link above is an Amazon affiliate link. If you buy with the link, I get a very small percentage of what you pay to help offset my review costs. I only review sunscreens which I would use on my family and myself based on basic requirements such as broad spectrum and a minimum SPF of 30.
Confirmed Responder… someone pinch me!
It’s taken a weekend of recovery and trying to grasp my news in order to write this. I don’t think it’s sunk in yet. Perhaps it won’t until I have a copy of scan results I can hold and reread in 9 weeks. In any case, as I try to grasp hope that feels so slippery, here is the story of Thursday!
I woke up Thursday to get the kids off to school before Danny and I planed to head to the cancer center for my labs, a visit with my oncologist and then dose two of Anti-PD1. Our plans had to change when our 6 year old who we typically DRAG out of bed for school was waiting for me on the couch complaining of a stomach ache. Poor girl had a tummy bug. So, knowing that my infusion was going to be simple and relatively quick, we decided Danny would stay home on sick kiddo duty while I braved the cancer center by myself. (We do have backup support if I’d needed it, but sometimes going alone is easier than mentally changing my gameplan to include a new equation.)
I got to the cancer center and had my port accessed and 10 vials of blood drawn. I then had my pre treatment EKG and was complimented on my aura of peace and calm by the PA administering the EKG. She was very sweet and has clearly never seen me on a scan result day! After the typical LONG wait to see my oncologist, he came in and noticed I’d lost weight (always a nice way to begin an appointment, right?) Then asked if I’d noticed a difference in my tumors. I told him yes and smiled and he GRINNED the rest of the appointment! He listened and didn’t even laugh when I described my odd method of measuring my tumor with my hand. He than did my physical and right away when he looked at my groin tumor confirmed “It is definitely smaller.” The rest of the appointment was a bit of a blur because I was SO excited! Dr C told me I was a responder to the drug and told me how nice it was to have such a positive appointment with me. Just one dose and I am a responder!?! I can’t even describe the emotions that came with that statement. I was SO excited! Talk about steriods here I headed upstairs to wait to get called back to the research infusion room to recieve dose two of Anti-PD1. I called Danny while I waited to share my incredible news!
My drug seems to take a LONG time for the pharmacy to prepare. My research nurse gave the pharmacy the heads up to begin preparing the drug and we filled out some research paperwork about side effects and how I am feeling while I waited. After about a hour wait, I was called back to the research infusion area. I was given my premeds and we began the 30 minute wait (can you tell days at the Cancer Center involve a LOT of waiting?) for the meds to work and crossed our fingers that the medication would arrive before I was due to take them. The infusion room had friendly patients and support people who celebrated with me when I told my infusion nurse that the drug was working! I wish I could tell those folks how much it meant that the celebrated with me since I was alone for my infusion and just bursting with excitement! My drug arrived just in time and I began my 30 minute infusion before heading home to celebrate with the family! Praise God!
Teaching Sun Safety and Dreaming about the Future
Last week I taught a lesson about sun safety and sunscreen application for my Mom’s second and third grade students . It was fun for this former teacher to get back into the classroom and talk about something I am so passionate about. Since that lesson went so well, and I recently purchased a children’s book about Melanoma and sun safety written by a fellow Melanoma warrior, I offered to teach a similar lesson in my children’s first and second grade classes. Today I taught in Joey’s second grade class. Joey loved being the model for me to demonstrate sunscreen application. I think the kids learned a lot about sun safety and proper sunscreen application. I didn’t focus on the best type of sunscreen to wear, because most second graders don’t have a lot of influence in their parents purchasing decisions, but instead I showed them tips for best applying stick, lotion, and spray sunscreens. We also talked about how important it is to reapply sunscreen and wear hats and sunglasses. I also discussed how to politely share what they learned with their parents. I sure hope that part got through!
I am dreaming about how to expand teaching sun safety to more elementary age students. I want to make hats available for students to wear on the playground. I’ve been doing lots of thinking about the best way to make this happen. Ideally we would raise money for hats and educational materials. Do we form a foundation? Do we create a non-profit? Is a non-profit the same as a foundation? Do I try to work with an existing organization such as the Skin Cancer Institute? It sure is fun to dream about the possibilities!