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. 

whereportisplaced_Large

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.

Phenomonal Halloween

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.

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!

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