1 year post chemo update

It's been way too long since I posted. I remember I was watching a few blogs of people that had Melanoma and when a long period would go by I always worried about what had happened to them. It would send kind of a sinking feeling through me.

All is well with me physically. I just had my 1 year checkup where they completed CT Scans, an MRI, and they checked out a suspicious bump on my surgery site. All came back great. It feels good to be at a year. On all the statistics and curves that I've looked at, I'm entering a pretty important stage... from about 1 year to 2.5 years post diagnosis seems to be a pretty important time when the mortality rates are pretty high. I don't live in fear or with a great deal of anxiety though. I am where I'm supposed to be and doing what I'm supposed to be doing. Cancer has a way of whipping us into shape and causing us to make sure our affairs are in order. I feel that much more today than I did 1.5 years. I've still got a lot of work to do, but one day at a time, one hour at a time.

Unfortunately, my mom passed away about 3 months ago from a rare skin cancer that was sudden and very aggressive. It's been pretty devastating. Having her live with us for about 1.5 years was such a beautiful thing but it didn't make her passing any easier. I miss her painfully. I love her more today than ever. So grateful to be sealed to her and to understand that I get to live with her again if I am worthy. Her presence is in my life as I seek the good in life. When I am focused on love and service and kindness, she is there.

I will try to blog more regularly... a little bit of a public journal.

All clear... no worries for 3 more months.

I'm in Houston for my 3 month checkup. I got bloodwork, CT scans of chest/abdomen/pelvis, and a brain MRI. All clear! I am still NED (no evidence of disease). I actually didn't feel too nervous headed into it. Just trying to take things in stride. I believe in God's power to heal. I believe in the power of the priesthood... I am also pointedly at peace with the will of my loving Father in Heaven in this process. 

Backtracking a little bit, cause it's been too long since I've posted. I finished my third treatment of biochemo. That last one really kicked my butt! I got a lot sicker on that one and didn't bounce back as quickly as the first two times. For about the last 1-1.5 months, life has been about getting back to normal and to routines. Family is doing great. We are enjoying the time together and Squeeze prays that she is grateful dad's cancer is gone just about every time she prays. Such a sweet girl. 

The doctor said I have about a 40% chance of it not coming back, so 60% chance of it coming back. I'm a little unclear on whether that is survivorship odds or just coming back odds... percentages are a funny thing. Either I'm going to live or not... My job is to make sure whatever life I do have is wonderful and has the right focus and service and love. 

The plan moving forward is that I have to be checked every 3 months for a couple years. With this one being clear, the doctor said that they are going to move MRI's to every year (unless I get headaches). I will just do bloodwork and CT scans and checkups here in Texas every 3 months. 

We just went to see Grandpa Cummings in Cedar City last weekend. The weather was awful! but the kids loved the snow and to play with his family. So grateful for time with loved ones.  

Dreaming and studying and prepping for #3

I had meetings in California today, so I decided to come early to see Tyler and Jen and Eliza. Unfortunately Jen and Eliza had to go to Ventura but loved the opportunity to catch up with Tyler. What an amazing little brother, example, and dear friend. I love that kid and am so grateful for an intertwined life and too many good memories to count.

I had such a vivid dream last night. I don't remember the exact situation or who was there, but I was in a very safe environment. I felt secure and comfortable. I had loved ones around but it was more just a matter of having people around and feeling loved than anyone specific. I felt like I was given a choice, it felt like I had control - you can take control of your life and have the cancer gone, but you have to give up the benefits as well as the hardship. It was a feeling of surety and panic. There was no question that I would not trade my experience and growth in order to not have the cancer anymore - too many blessings, too much beauty, too much spiritual growth, and too many deep meaningful relationships tied to this hardship. I wouldn't change it for the world. It was such a peaceful feeling to feel like I had a choice, like I had control for just a minute - and that I had enough faith and belief that my life is in God's hands that I wouldn't change it. A tender mercy and blessing. I will count those and remember them - a source of strength through the hard times.

I flew from CA to Houston tonight. I have MRI and CT Scans tomorrow. Always a little scary that something will show up and the cancer will have spread. Fear and faith can't exist at the same time...

I was reading "The Infinite Atonement" on the plane and ended up in The Book of Mormon reading from the teachings of Alma and Amulek. I quickly found myself in tears pondering the gospel and the atonement and the blessings and peace available there. I was reading the words of Alma to his son - "I know that whosoever will put their trust in God shall be supported in their trials, and their troubles, and their afflictions, and shall be lifted up at the last day." Then as Alma goes on to talk about his sins and fears and being paralyzed and struck thinking that all was lost because of his mistakes - actually being in a coma for 3 days racked with torment and thinking all was lost - but then remembering the teachings of his father and the gospel and the shining light of Jesus Christ. He felt hope and "could remember (his) pains no more." What a beautiful story of redemption and light. How beautiful of him to share his example of turning from darkness to a life of service and spreading this hope to other. I also read in Alma 34 and Amulek's beautiful discourse on the atonement. Such hope, peace and light in his words. All of it centered in Christ, His life, His love and ultimately his infinite atonement and sacrifice for us... For me. So grateful for my knowledge of this in these times of trial. Can't imagine facing without. I'm grateful for Amulek's counsel to be "watchful unto prayer continually, that ye may not be led away by the temptations of the devil" and also that "ye should work out your salvation with fear before God." Sometimes the spirit bears witness so strongly of things we read. It's life altering and confirming about what is true, what matters in life and how I should live my life. Those moments of clarity are so precious...precious gifts from a loving Heavenly Father. I'm so grateful.

I didn't know if I was going to be strong enough to keep fighting through this treatment. I reached a breaking point one night... But also have the experience under my belt of my sweet wife singing like an angel to comfort me and help me get to sleep. I'm grateful to feel stronger and ready for this next step. I got this :)... Again I'm hopeful to gain a deeper understanding of the atonement through this suffering.

Diamonds come from intense pressure and time. I'm grateful for my trials (not that I'm begging for more :).

I almost forgot to mention that I was pleasantly surprised to see Brad at the service center. An unexpected treat. Also so many dear people to me there. Loved talking to Beverly and others.

Also had a wonderful weekend with Bev, PJ and Kimball this weekend. I know it's such a sacrifice for them to come see us, but love the time with my sister and time for my kids with their cousins. Some deep meaningful conversations about life and struggle. Its a beautiful thing when we can talk and uplift each other.

Relief

It definitely is the hardest time when I come home for the first 5-6 days. The first treatment, when I got home on Tuesday night, I was feeling better by Friday. This time Friday came and I expected to feel better and I just didn't. Kind of depressing. There is something so important about managing our expectations. It's not so hard to deal with things when we expect them to be so, it's when we expect them to be better and different that we then have to deal with the worse or different experience and ALSO our expectations as well. Double the challenge. I think marriage is the area that I've had to learn that over and over again... not that my beautiful wife hasn't exceeded my expectations in every way shape or form, BUT no one can live up to each others expectations and even after 15 years of marriage, I still have to manage my expectations (and maybe more important her expectations). Anyways...

I think today I'm starting to feel better. It just comes like a wave, I feel ok in the hospital, then they give me my last set of IV meds and send me on my way. The next 4 (or 5 or 6) days, just go so painfully slow. I don't even know how to describe it because its not like regular pain. I don't have a headache, or a stomach ache or any other ache. I just feel tired and nauseous it feels like a big 10 inch black dark hole through the center of my chest is just gone and I can't do anything to make it feel better. It was nice this time because I didn't feel so unhappy this time. The first time, I think I was crabby with Kristin. This time didn't feel like that... I felt more restless this time. I couldn't sit still, I was more quiet. I would sit down and then a few seconds later I would need to get up and move. I couldn't find any comfortable places, just moving from place to place would bring me some comfort, but then I'd someplace and couldn't feel settled. Kristin's dad had talked about feeling this way with his cancer treatments. It's a strange feeling to feel like your running away and toward something but you can never find it. You can't find that comfortable bed or chair or even a conversation or book or... just kind of trying to satisfy that need to move and find a place to feel ok. Akathisia - this is the clinical name for it - "a feeling of restlessness and a strong urge to be in constant motion. Movements include fidgeting, rocking while standing or sitting." It says its a side effect of the ABH (ativan, benadryl and Haldol). I'm worried it's the Ativan - my big concern is that they'll have to take me off of it for this next round. I don't know that for sure, just worried at this point. I feel like it has been such a wonder drug in terms of making the hospital time go by so quickly and then also making me forget the time in the hospital. It is a blissful way to pass a miserable time.

I've also had some issues with aura's in my vision. I've had this happen maybe three times when I see bright lights on the side of my vision and then a little in the center. It doesn't develop into a headache, just feels like it's going to and makes me feel out of kilter. I'll have to talk to my doctor when I go back next Tuesday to get some advice on these two things. I sat through sacrament meeting on Sunday with this feeling. It made it dreadfully hard to concentrate. 

I have a week ahead of feeling good. I'm so excited. A whole week - what am I to do with myself :). I did some yoga this afternoon (very simple stuff about 20 minutes long). It felt good to be doing something active and centering to my mind. The exercise was good and then the breathing/relaxation at the end was also very calming inside. I'm hoping that I can do yoga for the next week and work on this way of calming myself when I feel my inability to sit down and calm myself down. The mind is such a powerful tool if we can learn how to use it.

I'll hopefully be able to get some work done in the next week as well. I was telling Kristin that it's hard to get back into things for a week and then completely disconnect for 1.5-2 weeks. It's hard to feel like I'm able to do anything productive and to feel like I can make a difference. I guess it's what I have to offer so I will do what I can. 

Wendi is coming down on Tuesday to be here for the week with the kids. She had to take the time off work and it feels like a HUGE sacrifice. I'm really excited for my kids to spend the time with her. I have such amazing siblings. So grateful for her and Greg's sacrifice for her to be down here. 

Round 2 of 6, DONE!

So I actually completed the last of the biochemo meds earlier today. The treatment time was ok this time - actually a little harder than I remembered from the first time. As more time passes, the more I forget. I pleasant side effect of the Ativan. I am doing well and healthy. They had to keep me on a drip to clear out my kidneys. Other than that my organs seem to be responding well. I'm super fatigued this time which is a bit surprising. I felt better going into this treatment than I did the first time but I think the cumulative effect of the meds is being felt. It will probably get progressively more difficult, but hopefully not devastatingly so.

I'm just laying here in the hospital bed. Kristin is bustling around the room getting ready for our flight tomorrow. I feel comfortable - when I have the meds right this is not too awful of an experience. We have a plan for the meds tomorrow. Last time when we flew I didn't take anything - we were afraid that I'd pass out and then Kristin couldn't work with me getting on and off the plane. This time we have a better understanding of the meds. Everyone has said that its so important to stay on top of your meds - I didn't really understand that last time as all of the meds I took with me were PRN (as needed) meds and I didn't understand what I was feeling. I just felt awful - I didn't equate it to nausea or itching or anything. So I basically didn't take the meds. Not smart on my part. Hopefully, the place ride tomorrow is much more pleasant (SLEEP!!) and we can get through it ok. Dale dropped us off at the airport and will be picking us up tomorrow. That should be a big help.

Kara and her family has been with the kids again. So amazing her service. We are very blessed.

Anyways, just wanted to get a quick update out. I'm alive and doing well. Really nervous about the next 4-5 days but I think we've got a plan to deal with it. Can't wait to see the kids!!!! I always miss them so much.

Had a visit from Celeste and Rich on Saturday. It was awesome! I think I was a little out of it so if I drooled or said anything silly, my apologies. Such a beautiful family and we loved spending some time with them. That's a 10-11 hour round trip drive - no small sacrifice. Makes me feel loved.

Grateful for my savior Jesus Christ. As I was a little more coherent this time I was able to ponder more about His suffering and His love. Something deeply humbling to be able to have our small little trials and heartaches and to be tie them back to him and know that he cares so much about me individually. So grateful to know that.

Good night. I'll try not to wait so long to update :)

LOOOONG journey home - just breath

Holy cow! That was the hardest trip of my life. Not being under the care of the doctors and nurses, being stuck in a hot plane (and then a freezing cold plane) - my body can't regulate temps well. Feeling nauseous and fatigued beyond anything I've ever felt before. As my friend Barry who went through this before warned me, the week after biochemo is the hardest week. I'm a believer. It is very nice to be at home. To see my sweet children... to limply lift my head to wish them well on their first day of school,

and watch my trooper wife march them off even though I know she is exhausted. I am just trying to survive right now. Taking in food, keeping myself hydrated and trying to rest. It's a simple plan and one free of any ambition. 

We got home about 10:30pm last night to Kaptain Kara-merica. Wow! House cleaned and disinfected, kids bags packed for first day, the whole house organized, mopped and perfect. It was full of food and the kids had gone to bed at a good time. They woke up refreshed and happy. I really am in awe of how much she did while we were gone for the week. I don't know how to thank her enough. We are truly blessed with such amazing people in our lives. Thank you Auntie Kara! I hope you know what your selfless service means. I'm convinced I see the savior most clearly through other's eyes. For some reason that is the clearest way His light shines to me... Kara's eyes were sparkling last night. Thank you to her wonderful husband and kids too. 

A couple of funny anecdotes Kristin told me yesterday when we were coming home. I remember basically nothing from the hospital. I was out like 22 hours per day. I do distinctly remember being snuggled up to her in our little twin bed most of that time. She said often people would come in to take my vitals and they would jump and say "whoa, we got two in this bed" or one woman came in and said "ya'll are like little teenage lovers. I'm gonna have to go slap my husband upside the head when I get home." My favorite was I guess someone came in and said "your last name is just way too hard so now we all just call you the 'cute couple'." Kristin responded that she wanted to adopt that nickname and the nurse just laughed and said you can't adopt a nickname that everyone already calls you :).

We have to go get labs tomorrow to make sure all is well. If I have diarrhea more than 3 times, a temp over 101 or anything problematic we have to go to the ER. UGHH. I don't want to do that. Hopefully all heals well. Hoping for a normal week next week.

One last funny thing I didn't remember at all until Kristin told me the story... I was laying in bed and I looked up and saw Dr. Patel
(medical oncologist) at the nurses station (see pic when she was chatting in my room). It was only Kristin and I in the room. I started saying "Fire, Water, Air, Earth" and singing the song for "Avatar, the last airbender". I guess I was convinced that my doctor looks just like the firebender's daughter (Azula) in that show and I felt like singing... don't remember at all!

Lastly, my sister in law Valerie mentioned to me that you never know when tender mercies would come and from where. Got one last night night via text message as I was sitting in airport waiting for luggage and feeling like I was in hell... received a note of love and encouragement that felt very much out of the blue but felt like a tender mercy as it brought me to tears. Thanks to those who receive promptings and follow them. Life is made up of so many of these types of opportunities. Thanks Nigel :). 

1 Week of Biochemo DONE

This was written from the hospital before we came home...

That was.... interesting? I've said before that many weeks of my life were a blur - This last week was completely a blur. Ativan is pleasant hehe. My wife is an angel. My doctors and nurses are heaven sent. I feel a ton of love. I'm fortunate to be young and healthy. I basically just remember being tired. I would roll over and find a comfy spot and go to sleep. To start the week, they came in and hooked me up to a monster looking IV pole. At one point the pole had 16 IV bags on it. The pic below is when my nurse was first setting it up (looked more like a battle than a medical procedure). Got to practice my Chinese again with this wonderful nurse (she was so sweet and came back and visited us even when she wasn't our nurse).

After she set it all up, she then told me she was turning it all on. Dacarbazine, Vinblastin, and Cisplatin (all Chemo drugs), Interleukin-2 (biotherapy drug), and Ativan all came that first night (and the Interferon - biotherapy - was a shot in my stomach). I didn't feel any pain as the IV's started, but about two hours into the process, I remember feeling an awful sensation run through my body. I rolled over towards my wife, groaned and moaned and snuggled up next to her - yes we shared our tiny little twin bed for a week (I told you, she's an angel). Honestly, that is as awful as it got. Other times I remember feeling some nausea (I think they'd ask me if I was feeling any nausea and I was).... but mostly I was just completely out of it.... kind of a drug induced roll over and find a comfy spot kind of dream. I was cold some... I do remember getting the chills at one point and shaking uncontrollably and they had to give me some demorall to control that. I do remember often times coming to it enough to look at my wife and feel so much gratitude that she was there and so supportive and loving. I think I even told her that a few times. Every night for 5 nights they would give me the Interferon as a shot in my stomach - I laughed when Hong, the nurse,  gave it to me the first time cause she pinched my stomach so hard that the shot didn't even hurt. Smart. Sun Tzu - The art of deception :).

As I look back on the experience (and especially as I look forward to the 5 additional weeks of this over the next 4 months), I think I need to be careful not to mischaracterize it as not a big deal, but rather I feel I was comforted and held in a loving embrace in a time of need. As I sit here pondering the experience and how to describe it - before the treatment, my sweet intuitive mother was blessed with a peaceful assurance that someone would be with me during this time. This happened. Many people have told me that others beyond the grave are standing ready to assist. I felt it strongly this last week. I'm brought to tears of gratitude as this realization hits me fully right now. Maybe my older brother Timmy, my sister in law Susan, my mother in law Lynne, my grandpa Albrechtsen, or possibly my namesake Great Grandpa Parker. As I write that last one, the tears roll freely.

Short story tied to that one. My mom and dad actually agreed on my name as John Eric when I was born (actually listed on my birth certificate for 10 days). As a member of the Church of Jesus Christ of Latter Day Saints (Mormons) we are then blessed in church by someone holding the priesthood and given a name and a blessing. Usually it is a restating of the name that was put on your birth certificate in the hospital. My father (unbeknownst to my mom) changed my name when he pronounced that blessing. Calling me John Parker - my great grandfathers name. My father felt guided by the spirit to make this change. Afterwards, in doing some research he found out that Grandpa John Parker and I share the same birthday. He actually passed away on a freak accident about 2 years older than I am currently, 38. I feel comfort in that story when I have only felt confusion and a little wonder before. Family history, genealogy and our roots matter deeply.

I am not a superstitious person, but I have come to believe deeply in some things. There are purposes and reasons behind the things that happen in our lives. Every once in awhile we are blessed with a glimpse of that. It shines so brightly now as to take my breath away and make me gaze up in awe as if I can see the very face of God.   

I am very blessed.

So I actually feel pretty good right now. They say the next five days should be the hardest. Hard to eat. Nausea. No energy. Etc. We'll see. I can't wait to get home to see the kids. We have a flight in 3 hours.

Thank you so much for the prayers and the support and love. Obviously I'm feeling them. We are set for the second round of this treatment on August 21.

I do seem to have some small issue with my liver that the doctors are watching closely and trying to figure out what's going on. They ran a few more tests and should have some results in about a week.

When we go home, I need to be as active as I'm able, try to eat as much as possible, and try to rest. I will have blood drawn 2 x per week to make sure all is well. I guess about 1 week from now is when my immune system will be at it's lowest so I'll have to be cautious with that.