Adriana Cooper

I have friends tell me all the time how strong I am but it's hard sometimes when faced with this diagnosis. Two years ago I was Stage IIb and thought I was going to be good for a while...

I will admit, I have not always been playing it safe in the sun. I grew up in southern Ohio, lots of sun and swimming. We laid out with baby oil back then. I did do tanning beds as well. I am pale, freckled and blonde (well my hair is pink right now). So without further ado here is my melanoma story:

At the age of 36, I was diagnosed with Stage IIb on my upper left forearm. Had two nodes removed negative. Had a wide excision done removed a 2cm area. So thought, OK, get back to life. Guess cancer had other plans. I was almost 2yrs cancer free when I noticed a bump just above my elbow not too far from my primary. I went in for a check with my primary doctor and asked him to look.  He removed my first melanoma. He said it was most likely a fatty tissue and would remove it for peace of mind - great, one less thing. I then get the call to call him back ASAP. I knew. The dreaded M word. It was .8cm (the largest fragment). Next step: scans at Seattle Cancer Care and seeing my oncologist. Now I get the results from the scans: 15 spots in my lungs and the largest being 8mm. And 2 small spots in my liver. Meet with a pulmonary physician at University of Washington to do a lung biopsy on one spot, which came back melanoma. Now I was given the diagnosis no one wants - Stage IV metastatic melanoma. I was prepared for it. I have accepted it. I was more reaked out with the first diagnosis. 

It's a scary world to live in when cancer is involved. I have goals set for myself that I wish to accomplish before my time here is finished. I have a wonderful fiance who, without him, I would be going crazy. He is my rock. I have two wonderful children whom I adore. My life's goal is to see them graduate college. I plan on reaching that goal. I will fight to the end. And educate others as I go along. My story is not over.... 

There is no toe tag on my foot.....

Mon, 2014-06-02

Comments

holy moly melanomy - (9/22/2014 - 4:13pm)

This is completely random - I haven't been on this page for a good year or so.  I came on today to see if anyone knows of a support group in the OC where I am.  For some reason, I decided to go to patient stories and I see yours and click on it.  And then I see your story...

I wanted a support group because my latest freak out is a mass that is about an inch or so under my wide excusion scar.  The doctor also suspects that it's a lipoma/fatty tissue - but I am completely terrified for obvious reasons.  Also, in the last two months I have been having sciatic issues on the same left side as the scar/mass and I've never had those issues before in my life.  Not to mention the left leg seems to fall asleep quicker/more often than it has as well.  I have an appointment with a surgeon this Thursday and will insist on removal

So, completely random that I decided to pick your story out.  Did your feel like 'fat'?  Did you ever suspect otherwise?

I hope all is well with you!

"Everything happens for a reason"

holymolymelanomy.blogspot.com

 

Carlos P - (10/25/2014 - 10:48am)

Hi Adriana, I am so sorry to learn about your current conditions, keep up faith! I just found out that I am at stage IIb and waiting to see the plastic surgeon to remove more tissue from the side of my neck.

I am worried, and was wondering if you could offer some advise for when I see the surgeon, questions to ask, treatment etc...

 

Carlos

adriana cooper - (12/11/2015 - 12:51am)

SBRT on Arm followed by Yervoy

Failed Yervoy with severe joint and back pain and swelling resulting in need for can end walker for a period of time. Stopped after 3rd infusion.

Found small bone met in sacroiliac area.

On Predizone and Dexamethasone for quite some time for joint pain and BRAFi side effect control.

Zelboraf and Taf/Mek combo worked well for about 11 months(classic results with substantial tumor reduction)

Brain Met revealed and Gamma Knife Treatment 10/2015

Brain Met bleeding and edema 11/2015

12/2015 start Keytruda with swelling and joint pain on day 2 - we are concerned

 

Rob and Adriana

 

Adriana

ZONIE76 - (3/7/2016 - 7:34pm)

I 'm new to this site but I read your story and I'm  thinking of you. I read Dr. Russell Blaylock's newsletter and he recommends Curcumin and Berberine together as they work synergistically against cancer. I have had squamous cell and basal cell ,...too many years in the Arizona sun and have been taking both of these supplements regularly. He says these both work well with chemo treatments and enhance their effectiveness. You should check with your oncologist but these have a lot of research behind them. You get better absorption if you take them with olive oil or some type of fat or black pepper. They also help with inflammation and joint pain. Really helped me with my back pain. Thinking of you.

adriana cooper - (11/7/2016 - 10:11pm)

After responding well to Gamma Knife and complete reduction in lung and sub-q tumors, Adriana was declared "in remission" in Feb. 2016 and taken off Keytruda and had a nice spring and early summer. Unfortunately in July shoulder pain started followed by debilitating sciatic pain, facial pain, and facial palsy. After visiting a homeopath, chiropractor and physical therapist, Adriana was referred to neuro-oncology. In mid September 2016 she was positively diagnosed with leptomeningeal carcinomatosis (LMD). 

On September 27 Adriana had her ommaya placed without particular incident and recovered over the next few days although she continued to have substantial facial and sciatic pain as she has had for some time. On September 30 Adriana had her first Depocyt treatment. This day was also the first time ever that I had to use the wheelchair to get her into and out of the hospital due to the continued pain she was in, heartbreaking for me and frustrating for us both. Her pain meds were increased and the treatment was administered without incidence although I must say it is slightly disturbing seeing fluid being sucked out and put in through the top of your loved ones head. Although side effects of chemical meningitis were described no instructions as to when to call in or take action were given. By late that night neck pain and headache had set in along with her other pain, and fevers starting by noon of October 1. That evening the neck pain was severe and temperature close to 102 much of the time. We increased her Dex at the recommendation of the on call/nurse/neurology resident (middle of the night on a weekend of course) and advised to go to ER if temp stayed above 102. Pain and continued fevers through October 2 and most of October 3. The fevers finally subsided during that night.

On October 4 while still in considerable pain (again in the wheelchair) we visited the oncologist who advised Adriana to cancel further Depocyt treatments as it is “ineffective for melanoma” and will only cause further discomfort and that we will now be focusing on quality of life treatments as there is no cure for LMD. Essentially she had the surgery and treatment for no reason :>(( He confirmed that our research of prognosis of 4-6 weeks un-treated and 6-8 months for treated patients was in fact correct. He also theorized that Adriana has likely had leptomeningeal disease since February 2015 but mis-diagnosed as the symptoms were mistaken to be unusually severe side effects of ipilimumab and masked by the steroids and BRAFi she was switched to at the time. He advised that she see her family (which was already planned) and get affairs in order – the end of life discussion. Although he mentioned hospice he referred us for an appointment with palliative care. He restarted her on Taf/Mek combo and continued Dex to control fevers (a side effect for her during her previous course of Taf/Mek) in hopes of some improvement. If improvement is seen then possible return to Pembro in order to conserve BRAFi for extended use. In my hope for some optimism and in the light that she has had LMD since 2/2015 why not repeat the sequence (or some combination) of BRAFi—Gamma Knife as needed—Pembro-- that has gotten her this far.

Within 5 days of starting Taf/Mek + Dex all of Adriana's pain was gone including neck-head-face and the horrible sciatic pain (lastly diagnosed via MRI as Tarlov cysts) that has plagued her for months. Although she has double vision (hope to see a neuro-opthomologist for some help soon, sooo many specialists) and continued facial palsy on the right and more recently facial muscle atrophy on the right. Our 10 day trip to Ohio to see her family and explain the circumstances went well and was actually relaxing for her. We are now planning a late December commitment ceremony with our family as we find that we can not get married without risking her health insurance, even though my income is very small. I actually asked her to marry me almost 10 years ago and this is long overdue and not something I want to let go undone.

Although things seem dire and the situation some times takes over our emotions, we continue to try and live our lives and get things in order. We strive to have as many experiences, love each other and our families and create as many memories as possible.

Feel free to email harborhits@gmail.com

Rob

 

Adriana

adriana cooper - (7/6/2017 - 4:41pm)

December 23, 2016 we had a beautiful wedding (view at ActionPhotosNW.com) with our close family and friends at a boat launch on Puget Sound. The weather was chilly with drizzle and snow but it was perfect. Adriana was in pretty good health and relatively pain free from October thru the beginning of February with the exception of some leg joint pain and some weakness which prevented her from learning to ski as had been planned. At the beginning of February her pain in her hips, back, neck, head and legs became unmanageable and was admitted into the hospital after an ER visit.  It was found that she had 3 brain tumors that had quickly grown and were jeopardizing her heart and breathing functions if unchecked. Further she had “cancer toothpaste” all along her lumbar spinal cord as well as other areas. During the week she started a series of 14 days of lumbar and whole brain radiation (WBRT). She got out of the hospital with her pain seemingly under control.
On Friday, February 24, Adriana was re-admitted to the hospital only 10 days after her previous stay of a week, to try again to get her lower back and hip pain under control. Although she could walk and move about she was in great pain. On Monday she had day 11 of 14 of lumbar radiation and WBRT which she finished on Thursday as an inpatient. By Monday she had lost all strength in her right leg and by Wednesday she lost the use of both legs due to strength although she still had feeling in them. The loss of the use of her legs was exceptionally distressing for Adriana. The plan early in the week was for her to go to a rehab facility in order to regain strength and learn to function using other methods at home including Hoyer lift and sling and slide board for transfers to the wheelchair and bedside commode. On Wednesday the Radiology Oncologist apologized and said the lumbar treatment didn't work as he had hoped. Her oncologist visited later and advised us to start home hospice care with a planned discharge on Saturday, March 4. He advised that she could resume taking the TAF/MEK that she had left at home but to not expect the same results (if any at all were to be had) as she had experienced in October, when first diagnosed with LMD, which completely resolved her pain within 5 days, as her “tumor load” is now significantly higher.
Although the social worker at the hospital as well as several others tried to reassure (me) us that hospice was the right path to take and that their significant knowledge of pain management and “comfort” (I hate that word and it's usage) would help us. We were quite skeptical (distressed) about what was to come. As much as we thought we we prepared for what this beast had in store for us we were not, and I was especially distraught. I could only see hospice as being there to help her die, and we were not ready for that yet. Knowing there really is no other treatment available, we still maintained hope in the BRAFi and planned on learning to live without the use of her legs as many others do every day due to car crashes and the like. The latter part of the week's stress was enhanced as Adriana was urged on several occasions by the attending doctors and hospice representative to complete a Physician Orders for Life-Sustaining Treatment (POLST) form (essentially DNR/feeding tube/treatment desires in the event you code). She has also been encouraged to change her choices by the hospice folks as her current choice to live isn't completely inline with hospice goals, creating a great deal of stress.
During the early part of the week I purchased an adjustable bed frame for our mattress that we had purchased the prior week in hopes of allowing her something similar to the hospital bed so she could sleep. During the latter part of the week I scrambled to make plans and get supplies together to modify our living area (now reduced to a small bedroom, bathroom/laundry room with 36” stand up shower and. 25' hallway on the ground floor of the 4 level home that we live in.) Items of relative urgency included moving the TV and cable to a wall mount in the bedroom to provide entertainment, building a plastic platform in the shower and ramp outside in order to easily move a rolling shower seat/bedside commode with occupant in for showering by one person, and modifying a sprayer attachment to the sink/toilet area to be able to clean the bedside commode in a sanitary manner as no one cares to have that next to their toothbrush or where they shower. The most daunting was learning from the hospital OT/PT and nursing staff how to safely transfer Adriana to the chair or commode without severely bruising my lovely wife or injuring myself. Also overwhelming for me was just the basics of toileting, cleaning and dressing. These are things you learn to do for yourself at a very young age and then relearn them for your children whom are significantly smaller than an adult. Most homes are not built ADA/wheelchair friendly and education for the tasks at hand are not taught in high school. No one ever thinks this is going to happen to them let alone plans for it. Care-giving is now redefined for me, although I am sure many of you have already achieved this level. With meds every 4 hours along with all of the other tasks including the chores of everyday living along with the fact that I am essentially her only caregiver, Saturday came and I was overwhelmed as I questioned if I could competently live up to the task. I only felt that I would miserably fail in my wife's time of most need.
It was a pleasant day when we got home from the hospital and we went for a wheelchair walk down the block. Calm came to me as I realized we were home together with her pain under control, just as we had planned on the day that she went in to the hospital with the only difference being she can't walk right now.
Well, it's been just over three weeks now and although getting up in the middle of the night for meds and toilet have been difficult, the daily routine is becoming a bit easier. Figuring out how we are going to pay our bills and get money for other needed home modifications along with regular living costs is a challenge, as I am now a full time caregiver, but we will get it figured out. Although hospice has provided some supplies and equipment we have found it necessary to purchase some of the (not inexpensive) equipment ourselves as it is more convenient for use in our home and help maintain our independence. I know that hospice is here to help, but I am constantly reminded that it has to operate as a business. We have had to lobby for a specific (more expensive than the cheapest generic, but not name brand) brand of lidocaine patch as they work better. She is now being encouraged to switch off of oral delayed release Oxy (which is working well right now) in favor of fentanyl patches due to cost. In addition, always in the back of my mind is that hospice's goal is not to prolong (or) shorten life, only to provide “comfort.” She is not done yet!!!
I have to say that one fear when starting hospice was that she would no longer have “medical care from those that we are used to” (did I mention I don’t like change) but the folks at Seattle Cancer Care Alliance have been here for us. The oncology nurse has called to check in, the anti-coagulation team has called about changing her blood thinner dosage as she had lost weight while in the hospital, and most especially the palliative care nurses have called me at least once every week and I have also called them with my concerns. Those ladies have truly been my lifeline in all of this.
About a week and a half ago Adriana was able to start moving her feet then her legs and as of right now she can kick me when she is sitting ;>) pull her legs up toward her chest with effort and lift her hips with her legs slightly to help get her her pants on. We attribute this to her hard work and desire to live. We believe the TAF/MEK to be providing substantial albeit slow benefit. Her pain is most often at a 0 and she has mostly stopped taking Dilauded which was 4+ mg every 4 hours when she came home and are considering reducing her oxy. I have focused on making every effort to return to normal everyday environment and to live our life. We have been in the car, to the store and out to the waterfront beach that we enjoy with the dog. She has had a few setbacks, diarrhea over the last week has been a challenge. We have been unsuccessful in defeating it with Imodium, pepto, and BRAT diet. She stopped BRAFi for 2 days (Fri-Sat) and thought on Sunday we might have it licked with no episodes (although no BM either) so she restarted BRAFi on Sun as pain resumed in her hip early Sunday morning. Adriana really believes the issue (in addition to nausea) is a side effect of the extensive lumbar radiation rather than the BRAFi as they have never been a problem before. I will post separately about the issue seeking advice as many might not read this far. I suggested that we stop the TAF/MEK again but she says no as she doesn't want the pain to return. Sadly also Adriana's dad passed away on Thursday and she could not be with her family in Ohio, we are thankful for Skype and Facebook to help us to be with them and they with us.
April brought Adriana's 41st  birthday followed by her 5 year anniversary since first diagnosis and three years at Stage IV.
Things continued well and Adriana's determination and strength allowed her so restart PT (along with continuing Taf/Mek) and regained much of the functionality of her legs. We had some struggles with radiation induced diarrhea as well as opioid induced constipation along the way but as June approached we planned a family vacation to Los Angeles in celebration of her son's HS graduation.

Things had been going fairly well the last few weeks for Adriana and I, we got her son graduated from high school on June 10 and began our trip to Los Angles area on the 13th with her son, along with her daughter and friend. The trip was full, visiting the beach the first evening. On Wednesday we visited the Hollywood Star Walk, La Brea Tar Pits, and attended a scene being shot at CBS studio “The Bold and the Beautiful” where my daughter works in the wardrobe department. We met actors John McCook and Thorsten Kaye who were very gracious. Thursday we were at Universal Hollywood most of the day, we went on The Mummy roller coaster but probably shouldn't have as well as many others. The Simpsons ride was more jolting than the Harry Potter Ride, go figure? I have to say Universal was much more attentive and accommodating to those with disabilities than Disney, moving Adriana and I and other family when with us to the front of most every ride line and at the front of every photo opportunity (we actually declined much of the time as those folks had waited in line too) and offering us a personal staff assistant as we needed, really quite impressive and appreciated. Friday was spent at a taping of MTV's Ridiculousness (special thanks to 1iota staff for getting us all in to the audience), Hollywood area and to the Santa Monica Pier. Saturday a bit of sight seeing and to my daughters home. Sunday and Monday were planned (and paid for) at Disney (alas California Adventure was not to be for us, but the kids made it.) Foremost I absolutely made sure Adriana was getting any and all the rest she wanted and I thought she needed through out the week. We went on a few Disneyland rides and photo-ops from 12-5 when Adriana started not feeling well after a few bites of turkey wrap at a late lunch. I actually think that was a coincidence. I took her back to the hotel room and spent that night and the entire next day with nausea and vomiting, even after a few sips of water. She could not keep any meds down either. She also started exhibiting signs of confusion and memory short term loss and headache. I attributed it to likely fatigue in addition to possible side effects from WBR starting and hoped rest at home would help. She made it through Tuesday's flight home and in to bed to rest but still not keeping anything down. Her ability to communicate was rapidly declining. Consulting with palliative care over the next day assessing if it is indeed advancement of LMD (had the BRAFi finally stop working) and if she should come in to ER (long wait and to what end) or call in hospice again. During all of which I had to prepare and find a replacement for a huge job I was supposed to do on Thursday. Both Wednesday and Thursday I had to leave her at home in the care of other family for a few hours. My time caught in traffic was excruciating but she was there each time I returned. Each day she said “Not Today.”
Adriana's communication was now very limited but mid morning on Thursday I asked her if she remembered what an MRI was like and if she wanted me to take her to the hospital, she said no. Lifting a bit of the decision burden off of my shoulders I was now fairly clear on what to do. Hospice was out Thursday afternoon. With some new meds on board Thursday we had her pain under control but things seemed grave. Just after the admit nurse left, Adriana started grabbing me and kissing me and moving about, agitated and putting her feet on me and the like. I called hospice and asked (after being on hold seemingly forever, 3 minutes?) to have someone come back right away, which our awesome nurse did. Adriana had a couple of hours of “terminal agitation” and with more meds, finally calmed down for the rest of the night. At that time she was determined to be in the weeks to days classification at the end of her life as a result of the advancement of this horrible disease. She had made it past her bucket list milestones and had experienced some exhaustion doing it and her body now was likely ready to be done with this cancer nonsense. It was very difficult night for me. Thursday night Adriana said “Not Today.”
Having made it through the night, I had been up and around early for meds and coffee but had laid back down to rest. Her sister had been here but had just left for the airport to pick up her daughter and mother arriving at 11AM from Ohio. I tried to get up to give more meds but was dizzy and lightheaded (probably stress and exhaustion on my part) and had to phone her sister to come back to assist as I was laying on the floor with nausea at this point. After I got back in to bed, seemingly barely conscious herself, Adriana rolled over and embraced me and rubbed and patted me on the back to comfort me. I was touched and amazed by my incredible wife. I was shortly able to recover out of necessity and get back to caring for her. Friday afternoon still seemingly declining with an increased heart rate but more stable we started the next evening. At one point during her waking times between meds, she continued to badger be to help her to stand. Although this seems it should be a private moment I offer this incredibly touching moment of love between Adriana and I. Remember she is seemingly not mostly lucid and having a restless moment. I had been in my PJ bottoms with no shirt and had been laying down. She badgered me to help her stand up which I finally obliged. She then removed her shirt so that her skin was touching mine and we laid back down and embraced for a period. She just wanted to feel me against her. Really two of my most treasured moments during my life with her. Later that night she had a rather restless first half of the night but settled down after her 3:30AM meds. During the next couple hours I noted a racing pulse with shallow and intermittent reparation which the hospice nurse indicated could be an indication that she may be close to the end. In fact on two different occasions I thought she had passed on. Adriana said “Not Today.”
Saturday brought a fair amount of alertness along with some fluid intake and small amount of soft food. In consult with her I gave some Mek (small pills, easy to swallow) to give her some kind of a chance as doing nothing = 0 and she has always indicated she wants to try reasonable opportunities. Saturdays nurse visit brought news that her heart rate was irregularly low and high along with intermittent reparation (which can be expected in this state) and that she felt that Adriana was probably now in the days to hours category. Saturday night was peaceful and Adriana said “Not Today.”
Sunday she had quite a bit of energy and has been quite alert, aware and engaging which has been to the delight of visiting relatives which at times numbered 6 in our small bedroom with record 95 degree temps and no AC.
This afternoon brought a new nurse that felt Adriana should have an enema now as it has been a week since her last BM as well as a catheter because she thought her bladder felt firm (although she has been urinating quite regularly, with more volume now and more frequently with her increased intake.) After two unsuccessful attempts at the catheter and a mess on the bed (which again had to be changed #!*<-%$**!!! during a very hot part of the day) as the protective pads were not placed properly, I called it off. Her ambient O2 was only 69% whereas it increased to 98% when assisted. I am concerned and am sure to not get any false hopes.
BTW again so far today Adriana has said “Not Today.”
The next few days things remained “stable” (fluctuating heart rate and respiration with apnea) with minor food, liquid and medicine intake. Her alert time and communication ability (I mostly blame my own shortcoming for not understanding her) continued and to deteriorate.
She continued to say “Not Today”
Saturday night she turned a corner an stopped food, liquids and meds with the exception of her liquid pain, nausea, and anxiety meds. I knew now she was in the final stages. But still Adriana said “Not Today”
I would do this for a hundred years to keep my wife from pain, and if she has to leave me I would gladly take on that pain to relieve her pain .
Monday July 3, was the day.

Sadly Monday night just after 8 PM my best friend, my wife, my world, left all of the pain, the medicine and all of the other nonsense in this earth behind. She was in the comfort of my arms around her, (her comforting me,) with our family at our side. Although, the fighter that Adriana is, it did not seem easy for her, I hope that I was able to keep any pain and discomfort in check for her and that she was only able to feel the immense love that I have for her. 

It has been my pleasure and my honor to care for her and share a small portion of our lives together. Adriana has been one of the best things to happen to me and I am forever grateful for the happiness we have shared together. Thank you to all of her family and friends for sharing her with me.
I would like to thank the staff of Evergreen Hospice for helping us through this transition, especially nurse Jennifer during our first week, nurse Eric whom helped me prepare Adriana for her final rest and wrap her in her favorite Seahawks blankets, after which she gave s smile (Go Hawks!) And with special gratitude, Seattle Cancer Care Alliance  palliative care nurses Judy and Jody that were there whenever we needed them day and night on a weekly and daily basis for many months (I could never express how much they mean to me.)
Live your lives to the fullest and don't take it for granted no matter what stage you are in. Educate yourselves and others so that you may survive this horrible disease. And may the researchers please double their efforts to find a cure, and compassion for those that need a chance at the various trials when they have no other choice, everything to gain and nothing to loose.

Along with her son, brother and father that have gone before Adriana, may those that have left this world due to this disease before her, welcome her and comfort her with their arms around her and guide her down the path to eternal happiness

Adriana, I have a hole in my heart and emptiness in my life without you. You are an Angel now and always have been. I love you.

Best Wishes and Thanks to All
Rob Murphy- Best Friend and Husband to Adriana Cooper

Adriana