¡Mela-NO-MAS!

More good news

I had my oncologist appointment and treatment yesterday. Everything is smaller and disappearing! Yay! He compared my armpit tumor from a year ago and said it was smaller than a baseball, larger than a golf ball a year ago. New scans show it reduced to a few pieces, largest is marble sized. Really fabulous news!
We also had parent/teacher conferences and both my children have worked very hard to achieve being on the principal’s honor roll. Then the Wildcats won a very hard-fought victory last night! Amazing game and fabulous day!
Thank you all for the continued prayers!

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One year ago today

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.

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Everyone hates steroids

“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. 

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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.

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Happy birthday to my Daniel

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.

Yes everyday. I love you. Happy burpday!

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Melanoma Walk 2013 Information

Hello Team Mela-no-mas!

 

First, let me thank you SO much for the incredible outpouring of support this shows us. I had a fantastic appointment with my oncologist yesterday in which he described my current status as being “phenomenal.” So, tomorrow is a day to celebrate how FAR we have come!

 

Location: The University of Arizona Cancer Center – North Campus (Parking lot is south of Allen Road)

 

The Melanoma Walk festivities run from 2-6pm.

2pm-3:30 Arrive and check in on the south side of the building (along Allen Road)

2-3:40pm There are booths inside and out with sun safety information and lots of freebies! Make sure to grab your weight in sunscreen samples! ;)

3:3:30 Look nearby the registration for a Team Mela-NO-MAS setup handing out tees. Look for gray tees and a Team Mela-NO-MAS! sign.

3:40 Team photo at Gazebo Area outside the Diamond Pavilion Entrance (west side of the building)

4pm Time to warm up and walk! Don’t forget to cross the finish line and grab your swag bag!

After you finish the walk, there will be Chick-fil-a sandwiches, cheese pizza (for those who don’t eat meat) as well as Eegees available! They also usually have a nice raffle and awards for the highest fundraisers at the end of the walk.

 

If you can’t find us or have question, please feel free to call Daniel or Martha. Of course, please remember your sun protection! We are so honored to have you walk with us. If you take photos, please share them with us! marthabishop@gmail.com, bishless@gmail.com, send to our cell numbers, or on FB!

 

Huge thanks to BeachFleischman for their generous support over the past couple years and for sponsoring our team shirts this year. We’re immensely grateful!

 

Again, we are so honored to have you join us!

With much hope,

Martha

 

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Cub Scout Pack 219 Sun Safety Talk

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!

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October 10, 11 and 15th updates to FB

Update on Thursday and Friday’s appointments from last week. Great news. Along with an incredible sense of peace from God brought overnight on Wed- Thursday morning went very well. My spinal tap numbers are much better! White count norm is 0. It was 37 for first test and 11 on Monday (10 days apart)! I did not get my infusion because I am on the steroid, but I am still in the trial and have 12 weeks to get off the steroid. I should be able to get the next scheduled infusion on Halloween. I saw a neurologist Friday and will probably be on an anti-seizure med forever but because I was aware the entire episode, I can still drive! We are going to try some different anti-seizure meds to help me wake up a bit and avoid the depression. I also got orders for how to step down my steroid over the next month beginning on Saturday. For such a rough week of many unhappy appointments it was a remarkable one. Danny has been beyond incredible. Good news friends. Good news.  I have an MRI and followup with my radiation oncologist (brain guy) next week, and then maybe a break until Halloween! We can only hope!

And from my “normal page” Monday the 19th:
I worked harder than I have in ages today. Many loads of laundry dealt with, FOUR stores stopped at, including a less than $100 Costco trip, dinner prepped, active homework with the kiddos and played Outburst Jr with the family after dinner. I also have an appetite that I could unhinge my jaw and eat a chicken whole, but don’t think my caloric needs are quite that extensive yet. The steroids are talking! (Oddly enough, I am on day 3 of the lower steroid dose!) Must be the steroid in combination with actually sleeping last night. Here is to being able to stay still in the MRI tomorrow! Yikes!

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Oct 7- Lumbar Puncture #2

Update from Martha’s FB:

Thank you for all the prayers!!! I slept last night and feel like a new woman today!!! Lumbar puncture was super easy, even easier than last time. Grabbing the kids and lunch and heading home for my 24 hours of bedrest to avoid a spinal headache. Thanks for watching our babies Mom!!! 

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October 6th Prayer Request

Couple prayer requests to throw out if anyone wants them. I am improving on the steroids. No more headaches or strobe lights in my right eye! Yay! The worst part now is dealing with side effects from meds. The seizure med makes me low and the steroid makes me high! So… I’m not sleeping much.  Tomorrow I am having a follow up lumbar puncture to make sure the meds are working, although based on side effects, it is fairly clear to me that they are clearing things up! Not very excited about the lumbar puncture, but it wasn’t awful last time. Praying it goes even better tomorrow. This isn’t my favorite season in life, but my kids are so sweet to me. No school to deal with this week and this inflammation is treatable, it’s not new disease! Counting my blessings!

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Oct 2 and 3 Spinal Tap update

Well, I don’t rock hard enough to get to go on tour with the band… but the good news is that results from my spinal tap last Friday are in and show no sign of cancer cells in the spinal fluid nor infection. Thank God!

It did show inflammation my oncologists (yes I now have two oncologists holding conference calls about me. One the head of the department at UAMC- crazy) believe is caused by a treatment I did in the first half of 2012. It changes the immune system permanently and because the anti-pd1 is generating an immune response, my immune system decided to turn the dial up to 11, causing the brain side effects. So, now they need to tone down the immune response a bit while hopefully not completely stopping the good work against the tumors. I started a steroid today that I’ll take for 30 days then wean off. I continue on the anti seizure med, although my doctor cut my dose in half today because it has made me exhausted and I’ve been struggling emotionally (a normal and one of the more benign side effects, but one we hope improves!) I have an MRI and neurologist appointment to determine my driving and seizure med future as well as weekly oncologist appointments while I am on the steroid and that’s not all! Two infusions this month. Things are actually looking up. This brain stuff has been going on for a month, and next month brings a lot of appointments, but we are feeling there is finally a light at the end of the tunnel. Whew! You all might not have wanted all this info, but there you go!
Oct 3
Holy crap… other oncologist called. Official diagnosis is auto-immune meningitis (my immune system is causing brain swelling.) Doesn’t change anything, just a scary name (not the contagious nor infectious kind, just swelling.) Still need to tone down my immune system with steroids. Apparently the docs and nurses were really worried I had more brain mets, so this diagnosis is a relief. I do have a call back audition for spinal tap on Monday to make sure I am responding to steroids. I believe I am because today is the first time in weeks I am not treating a headache. Sounds like I won’t have anti-pd1 treatment while I am on steroids since that would counteract what we are trying to do. Status of study will be unknown for awhile. Gotta get my brain fixed first. A melanoma friend said hopefully my immune system is being as tough on my tumors as it is on my spinal fluid. Amen and amen. Please keep us in your prayers. Feeling better, but worn out from this journey!
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