I think I am the kind of person that can’t ever be fully comfortable when life is going generally well. I am always waiting for the other shoe to drop. I this goes back to my feeling worthy of good things. And that is another topic. But living with this wariness does cut back on joy and I know this. And inevitably because this is life – the shoe is going to drop.
And that is precisely what has happened to us. My health, strong, sweet , best friend, husband of almost 23 years ,was diagnosed with cancer. I can hardly stand to write this post. I can barely except what is happening.
I never expected the shit show to befall Kevin. I was the one who had cancer almost 9 years ago, I was the one who had chronic pain issues and multiple surgeries after..I was the one prior to cancer who had bad anxiety, auto-immune disease and other maladies. Kevin was the guy whose doctors were in awe of his health, never having much of anything wrong. Knees surgery for a patella tear, eye surgery to correct his terrible near sightedness, a few lipomas removes, a basal cell here and there and last spring what was called localized rare cancerous lesion on his upper back (but now -bc we have had all his records pulled- was shown to be benign on the pathology report) his track record was pretty good for a man almost 60 years young- until it wasn’t.
What began as overall “just not feeling my usual energy” – and he saw his doctor for this – bloodwork good – then he felt a bit better – eventually led to stomach issues that were very uncomfortable. Thankfully his doctor was listening – he saw a healthy man – even on all the bloodwork- but he heard someone who just felt off. AND he agreed with my suggestion that Kevin should have a test for H-Pylori (a stomach bacteria responsible for ulcers) as he had all the symptoms- and also at least a chest CT. The doc did better and ordered CTs of the chest and abdomen.
H- Pylori’s standard treatment is a bear… 2 antibiotics and bismuth (think pesto – bismal) and a drug like Nexium – multiple times a day for 14 days. I am all for the natural way to go with this but Kevin suffered through his standard drug regime and lost ten lbs bc one of the drugs made him so ill. There was not another drug option because of past antibiotic treatment that can make the H-Pylori resistant to things previously used. So he pushed through it. And he now is taking some natural things to further help keep that bug at bay.
In the meantime he had the CTs a few days apart..I think n Kevin’s mind and the doctors this was just as a precaution- bc we had found the thing that was making him feel bad- the H-Pylori – which comes with stomach issues and fatigue and other systemic symptoms with can vary for human to human. I thought the CTs were a good thing to have to reassure us all was ok. And yet something kept niggling at me – so I really would not let him put this off.
When the first CT result came back that he had a large liver lesion his doctor felt sure was a benign hemangioma – but when I read the radiology report the radiologist wasn’t so sure. The niggling kept up. The next CT came back seeing the same thing and a small stress fracture on the spine. That radiologist was concerned this was possibly malignancy. WTF?
My stress levels went through the roof. My fingers googled. I hated what I read. The doctor recommended an MRI. He still feel that because Kevin’s liver numbers were normal that this could not be liver cancer. There was an MRI- with still no definitive diagnosis. But something kept nagging at me.
He then was directed to consult with a GI doctor who went over the MRI and even he felt this was all so odd. He wasn’t worried about the spine as it want mentioned on the liver MRI as anything but normal. But he ran some bloodwork for liver tumor markers and they came back normal. A liver biopsy was then recommended. This was getting real.
Kevin had that biopsy in early February. It took nearly 9 agonizing business days for any pathology to come back and the first report was still unclear- but it was looking like cancer but not primary to the liver – and some type of skin cancer was noted as being possible in the pathology report but the report needed to go to an expert hospital and we were told that was going to be Hopkins. Which was good because we wanted Kevin to be seen there.
We were scrambling to get into Johns Hopkins and were directed to the liver cancer center not realizing they only deal with the primary liver cancers. We were moved over to the skin cancer dept. and after more waiting things began to move.
For some reason his liver biopsy landed at Mayo Clinic and not at Hopkins which caused some delay – which frustrated me – as we needed to get to the cancer team asap. Kevin’s pathology came finally in from MAYO which said strongly this was melanoma. Holy crap. After a PET scan, Kevin saw an amazing Dermatologist expert at Hopkins and he looked for a primary melanoma and told Kevin had he not know why Kevin was there he would have said “see you in a year” – his skin was fine. This doctor was so compassionate and made some calls and got the ball rolling and we quickly had an appt days later with the skin cancer team at Johns Hopkins.
So how does this happen? We get our bodies checked by a dermo yearly- was there something missed? You go straight to metastatic melanoma? (I feel sick typing this). This doesn’t seem normal. Sadly it is – in a small number of cases – I have read 2-9 percent of metastatic melanomas present without a primary tumor. The oncologist at Hopkins told us it is more common than that (and maybe more common at Hopkins since it is a research and teaching hospital so they likely see more rare cases). The lesions apparently can present on the skin but the body fights them off leaving small cancer cells to replicate inside the body. Anyway looks like this is what Kevin has. His PET showed the lesion on the liver and a probable area or two on the spine. He has had back stiffness for a while so this could be why he has a “stress” fracture in his back. He has a brain MRI this week.
From Mayo experts to Hopkins pathology experts – his slides will be well researched. Hopkins is also looking at the slides from the lesion that I mentioned above from last spring too. Just to rule out any misread pathology.
While I want to spare this post from most of my emotions – I will say I have wanted to find someone to blame- someone to hate….In some moments I hate everyone and everything. I can’t even describe the feeling it just comes over me – I am so angered and gutted. This is the second time we have had to tell our children one of their parents has cancer. Once is hard enough…twice? Come on!
But now I am putting that hate and despair aside as best I can (one second at a time, one minute at a time…) so I can walk this walk with Kevin who has to fight the fight to beat this beast. He did that for me. I need to do this for him. And how is Kevin feeling? Well he is shocked at his body- he is puzzled by the betrayal. He feels dazed somewhat but he as always has the amazing positive spirit. He says he feels up to this challenge. He never pities himself or if he does he wallows there for a very short time and then moves forward. I know from experience that you find some amazing inner strength to take each step.
He now has the benefits of being able to get immunotherapy It is well studied on melanoma but there are no long term study data available as yet – thus far the only study data they have is 6 1/2 years out from inception and those results show much better prognosis than before this option was offered. So that is a blessing- that gives us hope. It also doesn’t destroy the body as chemo can. It helps the bodies immune system to wake up. There are side effects and they can varying in severity. All we can do is take it one day at a time – one treatment at a time.
He has begun treatment. Two days ago we reported to the wonderful very nice infusion area of Johns Hopkins new cancer center. Kevin received his first dose of two immunotherapy drugs. He will do this protocol every three weeks for three more treatments -if he doesn’t have severe side effects. After that it is monthly treatments with one drug – and it can be ongoing as long as the body tolerates it. He will be scanned again in May or June we suspect.
Thus far , after treatment one, he has had mild effects of fatigue and maybe mild fever with some chills. He wants to try to keep his routine with animal chores and he wants to be able to workout – though he has been told he can only workout mild to moderately. But I know how much being able to continue to do things is important.
We are trying to get weight on him again and he is eating many times a day. We have also changed our diets to better eating habits – though we already ate fairly well so it is not a hard change to make really. Less processed stuff more whole foods. Less meat. He met with an integrative doctor as well. I think this is a needed part of the team to help guide Kevin in his recovery.
One day a few weeks ago I found myself walking in the field behind our house – I was pinching myself willing myself to awaken from this nightmare. Of course this was reality and this was our next thing. Sadly too many people have been through this. Some like us more than once. I read a staggering stat last week that cancer now occurs in one out of every three people! And soon it may go to one out of every two. This seems untenable to me. Where are we going wrong?
I guess in the days, weeks, and months ahead I will share more on how Kevin is doing. I know there has been so much concern. I want to thank all who reached out and have prayed, sent good vibes, made meals, gave encouragement etc. I didn’t mean to be vague about his diagnosis – it is just hard to for me to share.
And I again I mean it – it takes a village. And right now we are fine as far as needs. He won’t be getting surgery at this point as I once thought. But I will be sure to shout out if we need anything. Blessings and love to you – from Kevin and me.