Strong

The hard news…

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. 

to loath or not to loath thyself?

I think I am surprised to find myself writing again. I really thought I would stop- I could not fathom sitting down to try. I thought over the last few months that- well it began before that really but came to a head over the winter – I had lost my way. I felt I was lost and was not sure of my purpose. I just felt stagnant and blocked. What little creative blood that was a trickle much of the time this last a couple years had become a drip drip drip. I know it is there as I feel it light up sometimes. Today I felt it when I received a notice of a local photo contest. And yesterday when some uncanny thing happened involving the IRS – maybe uncanny is the wrong word when using it with IRS – I heard the thought in my head- “you should write about this”. But as with so many of those same thoughts, with that spark that comes with those thoughts the light quickly flickers out.

This past couple years has been hard for me and my family. I guess I would venture to say since my cancer in 2013 things have been tough. There is nothing like a serious illness to change the dynamic of the family. I think I have been harboring a lot of guilt over my getting ill. I had no idea that my cancer treatments would lead to years of chronic pain and my just being unable to be the mom my teen kids probably needed. Sometimes I was someone I did not recognize. And this all during their neediest years. Forget toddlerhood – teens need us more than they ever let on.

I became an official empty nester in March 2020. Just as Covid began my youngest child went off to the Navy. That left me unmoored. I never thought I would be effected by my empty nest. I have my mother living with us, and we have lots to do around the farm. I have my job- even though it pays little. I have various hobbies (of course on hold in early covid). Anyway I was effected by his leaving. I know it was that he was going to the military and to bootcamp that made it worse. In bootcamp they can’t talk with you much if at all. You feel very disconnected and that is hard in a time when we can text our kids at any moment and hopefully hear back from them. As sure as I was that I would not have a life crisis I found myself crying – missing him, my two other kids, and something else… Could it be my identity?

I was shocked about this. And what followed has been months of my getting used to my kids being gone, the military owning one, the other two in various stages of finding themselves, and me doing some deep personal looking at myself. And up came so much guilt of every failing I had as a parent. And they keep stacking up! My daughter got pissed at me last winter. So pissed she didn’t want to talk to me. For like a couple months. This hurt. And also during that time a long friendship ended. That hurt too. There is nothing like the sting of rejection – especially by your kids-to get you to look into the mirror and try and see how things happened and if you can do better.

Learning how to parent young adults is an art. I will think that I am helping my kid- no I am overstepping. I think I say something constructive – no I hurt their feelings. And since they too are learning how to adult they themselves lack the expertise on how to communicate constructively. It is easier to just not answer the texts. Or to curtly say they need space. SPACE? If anyone should need space it should be ME – the mom! I get to say I need space before you do!

I went from anger to sheer sadness to anger and back during the time my daughter didn’t want to talk with me. I sent emails apologizing. And then I realized at some point this issue of my feeling so awful about her need for space was not about her need for space. It was somewhere inside me. The lost me. The me that feared rejection – this fear goes back to my childhood- dysfunctional family -blah blah- we all have some baggage! Just when you think you have dealt with your issues…and believe me I had spent years trying to deal with issues in many a therapists office- on a soft couch or chair -only to have these feelings of rejection pop-up when my young adult daughter got mad at me. Son of a gun.

Once I got down to the issue(s) I knew I needed to jump back into therapy. First working on how to be the parent an adult kid needs and also to look at these rejection feelings…this lost feeling…finding my purpose…maybe even what color my next vehicle should be…ok thats a joke. But here I am trying to figure out what this next chapter of my life will look at. Deal with the sadness over losing some years to illness and pain and to try to not live in fear… but most of all self loathing over the many many mistakes I have made in my life. For not being the “greatest mom ever”.

My therapist told me she has had no mother come in touting how great a mom they were. Most moms beat themselves up over their parenting at some point. And when your kids are young adults and out making their own choices and trying to become independent persons and inevitably making mistakes- (inhale Anne)-you want to help them to not fall down! And when they do it is so easy to blame ourselves for the fall. And when they tell you they want to figure it out on their own it hurts bc we know so much more than they do, right? So much more that we want to instill all our wisdom on them – and yet they would rather hear from an earthworm than from us…it hurts. Then you ask yourself what did I do wrong that they would rather take the advice from the earthworm over me?

And if you keep hanging on to all that stuff it will just drown you. Well it was drowning me anyway. I needed to get off the drama triangle- its a thing -I can come back to this in another post. I needed to step away. Let them live their lives. Let them fall and not feel blame.

I had a kid who two years ago had to go to a rehab for severe drinking issues. He went to Florida to a rehab and a half way house, then another rehab out-patient, and another half way, and during covid another rehab out-patient for depression. I felt terrible for him and for months I didn’t know how to navigate this world of addiction. I still don’t really. As we went along I did realize that I was enabling my son. Not to drink–no no. The drinking was a shock to me (I always thought I would know if my kids were drinking too much being a child of an alcoholic – turns out that is false). Turns out I was helping him too much in rehab and in his making his way in his half way. So I backed way off. We had to. He needed to figure out things for himself. But crap that was so hard for me. But it was a good thing we did it. I am happy to say he found an apartment this winter with a sober friend. Got it on their own. He is working in a steady job – and prayer after prayer -hopefully staying sober.

Just as these accomplishments are not my accomplishments neither was his drinking my fault. Why would I take credit for either?….but I would easily blame myself for my fails as a mom for his drinking. Logically I know it isn’t my fault but I beat myself up when I found out he had a problem.

The things I accomplish in therapy this time may be better for my kids as I learn to parent adult kids. But for me it will be granting myself forgiveness for real and perceived failures. I hope this will help me open up again creatively. But most importantly – maybe I won’t feel so lost and I can begin to navigate where I fit in. What I want for the next chapter. Anne 3.0 haha!

Navy Son- Part 2- How we got here…

My son has been at the Navy training center for about a week now.  He is in quarantine as is the protocol at the moment for new recruits.  We did get word yesterday that a recruit in training tested positive for Covid-19 and had been placed in isolation.  I can’t imagine getting that call as a parent – but it is a reality we have to consider.  The Navy is making changes daily to it’s normal procedures and it can be frustrating but it is understandable that they are dealing with something never conceived of (a world crisis of this magnitude) and they are trying to adjust as best as they can.

As a parent of a Seaman Recruit  (SR) it is not easy when there is so much in flux and all I can do is remind myself that my kid is in good and capable hands. They will care for him if gets ill, they are caring for him now.  Over time I have come to an acceptance of my son’s decision to join the Navy- it didn’t happen overnight. But I have gotten there.

When my son first said he wanted to join the Navy he was a senior in high school that was in 2018.  I was not a fan. Kevin and I both encouraged him to apply to college and maybe do ROTC or apply to the Navy after he graduated.  I think at the time I thought it was an idea that came with not much thought or it was a fantasy of an immature kid. Like when he was little and wanted to be superman. Though he did wear out two pair of superman sneakers over the years! But still I felt that he wasn’t mature enough to make a decision as big as joining  the military.  He also mentioned  that he wanted to be a police officer- which again we suggested he wait on. I think in our parent point of view we thought getting a college degree would be best. 

He did a year in a university  – and never pursued ROTC- but then at the end of his freshman year decided to change to a major (criminal justice) they didn’t have at the university he was attending so he withdrew from there and decided to live at home with us and he began local community college last fall. 

I could tell he was not thrilled going to those classes. And I could tell by the amount of gaming he did that he wasn’t studying. His heart was not into it. I was beginning to realize it was a waste of money if he didn’t have a desire to be in college. That’s when during yet another discussion about drive and motivation and his future he brought up the Navy again. And again I admit I wasn’t a fan. He wondered out loud why I was so against  him joining the military since my stepfather was a career Navy pilot and made it to captain. My son had heard some stories about my stepfathers career – teaching young Navy pilots to fly on and off the carriers at night, fought in two wars.  To me that didn’t extrapolate into my kid enlisting. I wasn’t a Navy kid or considered myself part of a Navy family.  My mom married into one when I was a young adult. So I didn’t feel a pull to have my kids join. Do not get me wrong. I was thankful for my stepfathers service andI am so thankful for all military service men and women. I just wasn’t sure I wanted MY kid to be part of the military. I was scared. And I still am. 

I told him that if he wanted to join the Navy he needed to do all the work himself – because normally he needed my help to figure most things out for him, jobs, banking , school admin issues etc.   I decided that if he was really serious about the Navy he had to do it on his own. I was not going to facilitate it. If he went and hated it later  he only had himself to blame. And I figured since I left it up to him he would not do anything about it.

I was wrong. Within a day he had a meeting with the local recruiter in nearby Frederick, MD. And that morphed into more meetings and once he was told he was eligible he went to officially sign-up. I have to admit I was not a fan still. My anxiety about it ramped up. But since he seemed so excited- and he rarely gets excited by much – I wanted to be excited for him. We looked over the jobs he could choose from based on his testing scores. 

He chose cryptology- but then when he went to our local MEPS (the place where you they do recruit processing) the job wasn’t available. Kind of a bait and switch? But I realized later he could have waited for that job to come open but he wanted to leave sooner than later…so he chose a job in a Sub. Missile tech to be exact. Holy cow this freaked me out because  just the week before he said he didn’t want subs and I was happy with that. Then he picked subs!  He told my husband he did exactly the opposite of what he had said he wasn’t going to do. But he had had options and he could have waited. So I guess this is something he wanted to do. Or he thought he did. Or he was being a teen.  I really lost my cool when I found out he chose subs- first I was mad …then I sobbed- I am sure this was me letting out all the anxiety I had been having over his decision to go to the Navy- I will say I was going through some seasonal effective depression when this all occurred so I think my reaction was more dramatic because of this. But a Sub- 800 ft underwater….why?

I could not speak to him for like two days. I hated myself for this. I read up on subs and saw he could be under the ocean for ten weeks…with no contact. I felt claustrophobic for him. A projection onto him of my issues of enclosed spaces. But I also began reading about subs. I do tend to research things – probably more than my child did.  I am sure I do this as a way to come to terms with things. The more knowledge the better I am able to process things.

In my research I read about some of the scary tests they have to perform in sub school (where he will go after he passes bootcamp).  My kid doesn’t swim well ( I am told they will teach him to be a better swimmer in bootcamp) and they have a test where four of them have to go through a sub hatch in a simulation of a sub escape. They wear air filled plastic bags (I am sure it is more technical than this) over their heads and float to the surface. They have a room flood while they fix equipment, they have fire simulation. Oh Lord!  But the more I read the more I saw that the testing is obviously important  and they want them to pass so they help them to get there. And if there are issue like severe claustrophobia then they will help them move to another job not in a sub.  But most important I read about the camaraderie that builds among the soldiers in subs and on ships, and the sense of pride these seamen have for their Navy, and their country, and themselves. He needed this. 

My son needed a direction, he needed to find something that could build his confidence, and he needs friends.  If he feels that this is the vehicle to him finding himself who cares if it comes before , after or instead of college -and there are many benefits to being in the military as far as schooling goes.  It has taken time for me to wrap my mind around all this. The positives and the negatives, the risks and rewards.  It was never a case of me letting him join the military. If this is what he truly wanted then I wasn’t going to stand in his way. But I know he wanted and needed my approval. He wanted to know I was proud of him.  I have settled into the fact that my kid wants this and he needs it.  I am very proud of him and I have told him that many times.  But it doesn’t mean I am not scared too.  It is very hard not to be during this pandemic. 

My son once told me he rather live a shorter life helping others than a longer life not doing so. That is sobering coming from such a young person.  It may have been a thought of an immature young man not realizing his mortality but it was one of the most authentic and honest things he has ever said to me.  It makes me sad too- because of course I want him to have long beautiful life so his discussing his mortality at all is not easy. But I believe he feels a call to service of others. And if that calling was to join the Navy than I now call myself a proud mom of a Navy recruit. And will try to navigate my own fears as I root him on  -and – I let him go on his life’s journey.

I just miss him.

That Cat

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My barn cat Ziggy died yesterday. A hit and run.

I was outside yesterday morning with my very old sheepdog- letting him pee out front because he can’t get down the back deck stairs anymore- when I saw a young teen get out an SUV that had pulled into my neighbors driveway across the street – she went up and knocked on the neighbors door.  I know the neighbors don’t have teens so the SUV and the teen seemed out of place.

Her knock was not answered and she turned back toward the car.  I think she had seen me when I first stepped outside a minute before but I had stepped back behind the tree in my yard not wanting to be seen bc I was snooping. Yes I admit I was. But I wasn’t hidden well. The teen began walking back to the car.  I had called my dog to come in and I as I turned to go in I glanced over to the SUV and I saw that she was not stopping at the SUV. She was passing it and heading my way. I pretended not to see her. I am not a morning person – and I am not big on conversing before I have some food and my tea. 

 It was 7:30am -I thought she must be selling something. But it was way too early to be selling things- so that theory made no sense. Then it dawned on me as I heard the low ring of our doorbell that she wouldn’t be selling anything – something else was up -so I went to the door.

Maybe they were lost I thought. Some homes on this stretch of road are hidden down long driveways with their mailboxes on the opposite side of the road. So I opened the door and I was definitely not expecting to hear what I heard this young lady say. 

“We-my mom and I-wondered if you knew who owned the cat we saw over there. It was killed by a car.”

“Oh f*ck”. Were my first words. Then my apology for such words. Then I say to this young person – Oh well well you’ve heard them before. I was rambling.

Then my questions – is it black? Yes. Did it have white. I think so. She said – but we aren’t the ones who hit him. No. No I know.  Then I am saying I can’t handle picking the cat up I’ll get my son. (Kevin was out of town). She said –my mom says it has a collar. Oh my cat doesn’t have one. (Later I realize that she misheard her mom most likely).

At that moment I’m still not sure what I’m feeling. I’m not upset – it might not be our cat right? I’m just there bumbling my words -but I know I can’t handle getting too close. I walk over to my driveway and look past the car and I see a black leg with a white paw laying still on the other side of the road. Oh shit. I’ll get my son I say.

Get a trash bag I tell him. Get the dead cat across the road. I think it’s Ziggy. I don’t even know what he said- but my almost 19 year old son went outside and got that cat in a bag- our much loved barn cat. Though at that moment I didn’t want to believe it was him. Then I wonder if he thanked the girl for stopping. Then I think how this could have unfolded had we not answered the door. Would I have found him hours later when I went to get the mail or when I took my mom to the doctor that day? 

The things that go through the mind.

Even after my son had done this terrible chore. I’m asking him was it Ziggy? Can we be sure? He didn’t know for sure. He went back to look. Maybe he couldn’t bring himself to look again he didn’t say. When he came back in he still wasn’t sure. I was upset and irritated. How can you not know know your own cat I asked him? But shock is shock. And his was not wanting to know it. And there is his mom in shock wanting so hard to believe it was someone else’s cat. I even texted my neighbor that lives up behind us. Checking- Is Jafar at home? But he doesn’t wander far. He’s bigger than Ziggy. She confirms quickly -Jafar is at home..

It was Ziggy, Ziggers, Zigman, Zig….he is gone…as I write this I still can’t believe it.

I talk to my husband on the phone just before he has to go to a meeting. He told me to have my son take Ziggy to the vet – drop off his broken body. They will take care of him.  I was in shock. I didn’t know what I was feeling. Anything?

But then the like a sheet being slowly pulled off my body reality waves over me. And the tears came. So many tears.

F*ck, f*ck, f*ck. Why?

Just moments before the biggest worry I had was picking up poop on the bedroom from my old dog. But things can change in an instant.

The other day Kevin and I were going to a town nearby to shop and just as the road widens to 4 lanes a groundhog jumped out onto the road. Kevin had little room to do much bc of the traffic and sadly we hit it.  I bent over in my seat and held my ears yelling – no, no, no, no….- on and on. Kevin was rattled- and I am sure my reaction didn’t help. I cried – but calmed enough to shop for the few things we went out for. We were so upset about the groundhog we took a different route home. Since that day last weekend I had been really shook up about that incident. I had been trying to figure it out- look at it. See what it meant. 

But then Ziggy got killed on the road. 

As that sheet of shock wore off the tears burst forth for this sweet cat. For that groundhog too. For the son who struggles in rehab in Florida. For my guilt. Guilt over taking a cat from a nice lady who couldn’t keep him and making him barn cat. But he was born to be a barn cat – he took to it in days. I feel so much responsibility to my animals- and you can’t really control a barn cat. They are enigmas. But still I feel I failed in my responsibility.

I cried and cried. This was why the hitting of the groundhog hung on to me in such a way. I was needing to grieve things I had been holding in. 

There have been so many tears. Guilt and sadness about that and other things. Tears that have needed to come out – not all about this cat – this sweet cat. Tears I have hidden behind a wall that I build in order to be able to walk into each day with my armor on. Those tears clawing to come out and it took the loss of one sweet cat to break the dam.

The cloak of grief over a sweet cat and so much more. That cat that made us smile and laugh. That cat that hunted like no other.. who left us many gifts of dead prey in the barn. Rubbed up on our legs, followed us all over as we did our chores or I rode my horse. That cat who played with his buddy Jet in the barnyard. (Jet has been missing since last week- but I am hopeful he returns.) That cat that went too close to the road. That cat who died and now I grieve for so many things – and maybe in his leaving – in my finally breaking open- because we can only hold things in for so long or they become toxic to us- maybe that cat gave me a final gift. 

Thank you Ziggy- for being our cat…your job with us was complete and on you go to whatever is next. We will not forget you….

 

Ups and Falling Down!

The other day I took this picture:

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When I see this photo I see accomplishment!

I was trying to mark a milestone.  I had just accomplished the feat of taking the wheelbarrow out of the barn and rolling it along as I scooped up horse manure. This may sound super boring and probably an unsavory job to many people but it is a job that I happen to like – you can get a lot of thinking done when you scoop poop- and you often have the company of one or more farm animals. I have been unable to do this job for quite a while because of my chronic nerve pain in my arm and back.  So I was having a “look at me ” moment.  I thought if the nerve pain didn’t flare up too much the next day I would post this photo and brag on this accomplishment.

But then this happened!

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Do you like the dog as prop in the photo?

This must have happened because I was so full of myself from picking up manure! I was in the chicken yard grabbing some items I left in there and I turned caught my foot on the hose as I was stepping forward.  It was one of those falls where you think you have caught yourself and you expect to be upright but you end up on the ground. I landed on my side and my rear – and on my non- nerve damaged side. Thankfully.  I had to make a nice turn to end up that way. I do think one of my guardian angels helped that move because I don’t know how I landed like that.

On the ground my first thoughts were “did I land on a chicken?” (I didn’t – they all ran far away – chickens!) and “ouch my ankle” and then “this is not going to sideline me”. NO No no!!  The next thought was me wondering if my cowboy neighbor who was out feeding his equines saw me fall. (Kevin was nearby but on a loud tractor mowing a field).  I did not want my cowboy neighbor to see me on the ground! It is bad enough that I need he and his wife’s help for all kinds of things (they are young and able!) but I didn’t want him to have to come ask if I needed help getting up off the ground- I would feel ancient.

So I took a deep breath- assessed the damage and hauled myself up off the ground.  My left ankle was tender. But I was ok…I was not in that much pain–lie lie- I was. But I went over to finish some things for the horses including some brushing all the while hoping they didn’t knock me over!  I just could not fathom that something was going to take me down for the count. But I knew I needed to assess the damage to my ankle – both ankles hurt but the left seemed to be getting worse by the minute. So I went into the gym part of our barn and I took off my boot. I could see where I twisted it. Not too swollen.  Good.

I had twisted this ankle before years ago leading a horse down a hill.  But this fall was worse- it hurt much more! I was a bit worried but I waited for Kevin to get off the tractor so he could take a look. He thought it was a sprain -but because it was getting more painful pretty fast we opted to go to the urgent care for an x-ray.  It didn’t take long and they were fairly certain I had no break – but gave me the films with instructions to see primary or ortho as needed – and they locked me into a boot that felt like a ski boot and off I went.

I will admit to moments of self pity and negativity.  I am just beginning to get back in shape and being able to do more things and I did not want this to slow the progress. And I was back needing someone to help me – poor Kevin has had enough.  But I decided not to make it bigger than it was. It is just a sprained ankle. It will take time to heal but maybe I can work around it some and keep moving some.

I got home and broke out of that boot and iced my ankle all night.  I woke up with pain the following day but it seemed less than the day before which surprised me but gave me some encouragement.  I still felt like I needed the boot because I did want to try do something constructive with my Saturday. We always have a list miles long of things that need to get done. I was in the middle of spray painting a wrought iron table I picked up for $50. I wanted to complete that project. So I put on the boot and Kevin covered it with a trash bag and I got painting.  I was able to stand just fine and after a while I became so involved in my work that I forgot I had a sprain (and nerve pain for that matter!).

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Spray Painting!

Today I woke with less ankle pain again. I am paying for the spray painting with some nerve pain in my arm and back but I expected that.  I still can’t move my ankle certain ways. I feel like the foot needs support.  I had taken a knee brace and somehow made a foot brace out of it and that was providing support. The boot seemed like overkill. Today I went to the drugstore and grabbed a couple ankle compression bandages and an ACE wrap. I will keep some form of protection and compression on for a while. I think this is going to heal sooner than later if I can keep from aggravating it. I can see how I will still be able to do most things. I just need to elevate it some each day.

Well it is funny how one minute I was so excited about picking up manure and the next I was flat on my butt with a sprained ankle.  That’s life . You just have to take your joy moments and appreciate them. I will be back picking up horse manure again soon enough.  I am grateful my PT is going well and  that I am doing things I haven’t done in so long. I have hope!

 

 

 

 

 

 

 

 

Valentines Day Surgery

Not many people would opt to have surgery on Valentines Day but I did! I had one on my 18th wedding anniversary and had cake when i woke up. So maybe tomorrow some sweet confection will arrive at my bedside providing I can keep it down.

Tomorrow I will have another surgery to attempt to improve the pain I have been having for five years as a result of my breast cancer treatments. This one is actually removing my scar which is damaged by radiation and keeps getting stuck on my chest wall which we think is causing some of my nerve pain.  Part of my back fat(I have plenty of that!) and skin and blood supply will become part of my armpit. Its amazing to read about -Tdap flap -as it is called. Usually it is done on the breast as part of reconstruction -but these flaps are now used all over the body to relieve pain from scars and improve range of motion where applicable.

My new plastic surgeon for this surgery-  Dr. DC – is not new to me really. I have been seeing him for cosmetic things for a few years. And he is aware of my vanity and my pain issue. He just happens to work on a continuous basis with cancer patients. He firsthand has seen the damage radiation can do- he’s seen a lot.

Most of us with breast cancer even early stage like me are given the warnings about side effects from treatments  – but still have the treatments bc it gives you some sense of control during a time when you feel very out of control.  And most of us don’t have too many issues after radiation – some of it is short lived and some shows up years later. We don’t know who will end up in severe pain as I have. But my pain issues have a trajectory and I am beginning to piece things together but It is really of no matter because I can’t go back and change things. Hindsight is 20/20!

Anyway Dr. DC is a great person and a top doc. I will miss Dr. Williams my nerve surgeon as he has been the lead or assist in my last three surgeries.  I am just used to seeing his face in the OR and I trust him. He doesn’t work out of the surgical center I am going to. But he has given his blessing on the approach Dr. DC has in mind – so here we go.

Nobody on this journey wants to have multiple surgeries. I don’t crave going under the knife or the 4-6 weeks recovery.  It is when you live in chronic pain that you realize how much life can be taken away just by a bit of pain – like say in the armpit – and you search for some relief.  Thats what I have been doing.  I don’t write about it all the time anymore because that just gets morose.   When someone starts the cancer fight people tell you or  post – “you got this” , “be a fighter” etc. But after a while people have to go back to their own lives and you are out of focus – and this is how it should be. Now I am sure people think – “Anne is having another surgery?”, “Oh poor thing”.  LOL I get it. I wouldn’t understand either- and I am so glad most people don’t get it because  that probably means they aren’t in terrible pain day on day.

I have been cancer free for five years! That is a huge milestone. And praise God for that. My oncologist pointedly told me not to get too comfortable with this milestone reached – because the cancer can come back..Yes gee thanks Dr. HH – I don’t have a false sense of security but I certainly am trying not to wake each day with a sense of panic – I did that for long enough- so let me have some serenity- stop trying to burst my bubble. I live with freaking chronic pain. Isn’t that enough! Reminder is there daily- thanks!

I can say that I am much better than I was almost 3 years ago when the pain was so bad i was bedridden. For that I am thankful. Dr Williams got me this far. This time around I think I would like to be able to lower my dosage of the nerve pain medication I take.  Which I can only do if I have less pain. The meds leave me with low energy and some other side effects that get tiresome- esp weight gain. My doctors would like to see my arm work better and my range of motion improve. So we will see. Sometimes you just got to do what you just got to do!

I am off to eat some cheesecake. We had an early Valentines Day lunch today and we took the dessert to go. I will also be eating again around 11:30pm because I don’t do well fasting at all- and I especially don’t do well when the surgery is late afternoon as mine is tomorrow afternoon. Thankfully I can have some water 4 hours before surgery. I am sure this is so they won’t tear my veins apart trying to get an IV in! Been there! I am bound to become somewhat hangry by 3pm- maybe they will drug me up prior – or drug themselves! Hangry on me isn’t pretty! Bless those nurses. They will be probably be shoving some food into me when I am in recovery!

Happy VD Day ❤ (Send some good vibes out for me tomorrow if you think of it!)

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In January I went to the National Aquarium in Baltimore, MD. It is a spectacular place. They had the Jelly Fish Exhibit and it was really cool. Don’t these look as if they are lighting up from inside?

 

Sometimes things work out…

All I can say is we just never know where we are going to end up. We have no real control over anything. All we can do is make plans and have hope that things will be okay. For  the last two years  the one thing I had wanted so much to do was to ride my horse again. It wasn’t  a lofty goal really but one that seemed to be unattainable to me not long ago. I didn’t want to give up the hope that one day I would ride again…..but for a while it was iffy…

Two years ago I thought I would never be able to do many activities again let alone ride a horse. My only goal then was trying to find someone to fix the pain I was in. That was a battle unto itself but I did not want to give up- because to do so left me in a very dire situation. One that I could not accept.

June 2016 was a start of an intense pain drama that was caused by breast cancer treatments. The pain had been an issue since my surgery in October of 2013. I had sought help for it with no luck and then it really  reared its ugly head in May 2016 leaving me bedridden for much of the next year. It was hell trying to find the a doctor who would listen to me and not send me away with a shake of the head. They either had no idea what was wrong with me or they thought I was nuts. But finally I found a surgeon who listened.

Today, three surgeries later. I am not that woman stuck all day and night in bed anymore- but I still live in chronic pain. But the levels I am managing- and there may be more surgery in my future. I am left with a disabled arm that I cant use fully and overuse causes pain. Sometimes I don’t know what that overuse is. But I just try to dance with it- sometimes I am in the lead and sometimes the pain is.

I have been hell bent on doing more living- I have always been a physically active person and I missed the mental boost such activity gave me. So many things I could not do. Some because of the limits of my arm and some activities were contra-indicated by my surgeon- one being horse back riding. It was a total bummer to hear this but I temporarily shelved that disappointment and sought another activity .  I bought a kayak with pedals so I could go out in the bay near our beach house. The feeling of independence being on the water propelling myself was intense and important in my recovery. I bought a bike. I began to walk more. I can do limited exercises in the gym.  But I was really missing the one activity I was told not to do—ride my horse.

In the summer of 2017 I was still in enough pain that I was not sure I could ride and on enough drugs I was not sure I should ride. But one day that summer  on a whim Kevin and I tacked up my horse Harley . He accepted the saddle and bridle so well  that I decided to get on and have Kevin lead me around the dry lot. I knew the surgeon had not been keen on my riding but I wanted to be in the saddle. It was just a pony ride but it was the kick I needed – I set a firm goal – I would  ride my horse again. But there were still obstacles to overcome.

I didn’t think it would take another year before I was able to ride again. I had another surgery in November of 2017 to hopefully further reduce my pain. I would say the result have been pretty good. I am off opiates but still need nerve pain medications. . I have pain flares more often than I would like. But I am doing more. The surgery itself – which was fat grafting -had a longer than expected recovery time.

Every time I went to see my nerve surgeon – Dr. Williams- I would tell him that I wanted to ride my horse.  HIs concern was that my arm would be yanked forward if the horse pulled the reins forward suddenly- and this does happen. This can cause more damage to my arm. Also there is the risk of falling off but I think in my case the real concern was with the yanking of my arm. So I wanted to rectify that. How to keep that from happening. There had to be a way . Maybe I would ride one armed. I began to look into that as an option.

Then sometime this past spring my farrier came. I was telling her my plan to try ride again. I explained my concerns of riding with two arms and one getting yanked and I was also becoming nervous about not being strong enough to ride using only one arm (my horse is also neck reined) if my horse pulled suddenly. She told me to get a Daisy Rein. I had no idea what they were but it turns out they are used often for young riders. The rein hooks onto the saddle and also to the bridle and that keep the horse from pulling his head down. Maybe it would work for this old rider!

I saw my surgeon again in July and explained how much I wanted to ride and told him about the rein. He never did give me his blessing but he told me if I did ride I needed to send him photos after I was safely off.  So that to me was an ok to go ahead.

My plan was to move slowly into riding my horse Harley beginning in early August- but life threw us a loop as we suddenly  lost Harleys companion a- our beloved Arab mare -Airy to colic. It was a tough loss on all of us and I again shelved trying to ride. This time more for Harley than for me. I knew it was a stressful time for a horse when there are changes like that adding me riding him after such a long time off might add to the stress – and we wanted another companion for Harley so the focus shifted on that. It took some time but we now have Hank and Yukon here. Hank belongs to our neighbor and Yukon is our Guardian horse form a local rescue.

One  day a few weeks ago  I went out to the barn to feed the horses and our neighbor was bringing Hank back from a ride. I began to feel that envy. That yearning to ride my horse. I really felt it was now or never so I began to get Harley tacked up. It is a bit of a chore for me to get it on while trying to limit the use of my arm but I was able to do it with Kevins help.

Before long I told Kevin I wanted another pony ride. I have to use a step to mount now to get on- it allows me to not use my arm too much.  I got up and settled – feet in stirrups and I was holding both reins because we put the daisy rein on to give that a try too. He tolerated it well and best of all it worked! He couldn’t pull very far so no yanking of my arm.  After a bit, I asked Kevin to let me go and and I took a deep breathe in and let it out and off I went.  I maneuvered Harley around the dry lot for a while..at a walk.. nothing fast. He did very well – and we then called it a day. Best to end on a good note when working with a horse. And I was not ready to ride in the fields yet. But it didn’t take much time for me to be ready! So much for slow starts.

Since that day I have ridden twice out in the fields. The last time – this past Saturday- I was able to tack up on my own. I have learned to yank the saddle out of my locker with one arm and I can toss it up on his back with one arm too.  It was very freeing to be able to do this on my own.

I also can ride with one arm so I switch from using two hands on the reins to one. It turns out my arms are in a “safe” position so I don’t think I will get a pain flare if I am careful – but again it is that dance i mentioned above. That day I was in the lead. Dismounting is a bit of a challenge. I now lower the stirrup iron and dismount on the  right which is the opposite side we proper English riders are taught to do.

Obstacles aside I can’t begin to explain the mental effect being able to ride again gives me. It is something I have needed. It didn’t feel like it had been two years since I had ridden solo. It was as if no time went by at all. I felt right at home in the saddle. I am so lucky to have the horse that I have. Some horses may have been too much for me after not being ridden for so long. Harley is a true champ. We have a bond.

My goal is to ride twice a week for now. I will have to be flexible on this as well as I live my life around things we have planned – social visits, traveling, and doctors visits. So I often curb any physical exercise for a couple days prior to doing these things because I don’t want to have a flare up of pain which may require me to cancel the plans.

But that is life as I live it now. I accept it. You just never know where you will end up…right now for me I ended up back in the saddle. How lucky I am….

….And Dr Williams has been sent a photo..with more to come…

A New Fear

I have been a swimmer for as long as I can remember. One of my earliest memories that I have is of me taking swimming lessons in the baby pool at our swim club. Following that I spent years on swim team and also just playing in the pool. Many times you couldn’t get me out. I’d swim all day.

I had a respect for the water of course but I was never hesitant to be in or on the water. I spent hours riding waves with my dad and friends.

In the last ten years I stopped going into the ocean as much -the fear then was stepping on icky things. I was more wary of the currents and undertow. Probably because I had little Kids and even if they had ease in the water the fear of your child getting pulled out into the deep looms large for most parents I imagine.

I still had a love of pools if they weren’t too crowded (that’s a germ thing-yes I got more leery of the humanity in a pool as I’ve aged and well it grosses me out if there are tons of people swimming in a small enclosed body I water no matter how much chlorine is dumped in).

I love the water and I really love being near or in the water. We have a cottage just steps from a Bay. But I now have a fear of deeper water.

I was out on the bay the other day on my kayak. Kevin was along on his kayak. It was a chilly day. About 55 degrees. I’m a new kayaker. I got a boat with pedals as I can’t use my arm to paddle because Of my issues with nerve damage and pain. I was thrilled when I got the kayak. I motored around last summer and if the bay was a little choppy I found myself feeling somewhat nervous. I am no longer sure of myself as a swimmer. I can’t really swim which because of my limited use of my arms but it really didn’t seem to be a huge issue last summer because the Bay isn’t really deep and the water was warm. But the other day the water was cold and seemed deeper and it was choppy. I had wetsuit bottoms on but just a jacket and hat on. And I was wearing boots. Wellington’s. Maybe not the best choice.

While on the water as I was traversing some choppy conditions I felt myself panicking. A full out freak out was just on the edge of my brain. I kept picturing myself falling off the kayak. Or it tipping. Me sinking as my boots filled and my coat became heavy. I feel the fear now as I write this.

I had a flotation device but not on me – it was secured on the back of the kayak. I tried to reach behind me to grab but my limited range of motion and the rocking of the kayak made it impossible for me to reach it. That was a rookie mistake not to have put it in.

I told my husband I was feeling very scared. Kevin told me to take deep breaths and as I did I felt myself regain control of my thoughts. The choppy water wasn’t really that bad. The boat wasn’t really in severe danger of tipping. I tried to enjoy what I was doing and concentrate on the beauty. I’ve lost the ability of being able to do a number of things since my nerve damage became so bad and kayaking gave me the sense of freedom that I’d been craving. I didn’t want to lose that to fear.

We ended the journey on a good note. I was calmer but I had a wake up call. I’ve definitely lost my confidence that I could save myself if I got into trouble. I’ve never felt this way before. It made me mad. Just one more thing that had been taken away because of my limitation and because my body is weaker because of being mostly bedridden this last year.

But anger won’t solve anything. I’m a problem solver by nature. So moving forward I need to figure out how I can feel less fearful in and on the water.

Over last summer when I first went out to sit on the beach at the ocean I walked up to the waters edge and watched the waves roll in and I realized even then that I was very leery about even attempting to wade in to my knees and not for fear of stepping on something icky –it was fear I couldn’t even get up if I fell into the shallow but wavy water. As a result of this I decided to head to the neighborhood pool and allow myself to ease into a better comfort with the water. During the first visit to the pool I ended up in the deep end with a swim noodle and I was able to ditch that after a time and then proceeded to tread the water and I practiced floating. It isn’t easy to tread water with one arm but it’s doable. But this pool visit gave me confidence to venture into the ocean at least up to my knees or hips. And subsequent visits continued to help my confidence. I also worked on leg strength in the gym when I felt ok.

So why the panic the other day?

Well I’ve had another surgery since summer. Just four weeks ago. I haven’t been allowed to do much and maybe kayaking wasn’t a good idea. Maybe I felt vulnerable. I’m definitely weaker. It doesn’t take long to weaken when your on restrictions to not work out or do too much physically. And I think the cold water scared me. Cold water can be paralyzing. But most of all my biggest obstacle that day was my own mind getting the best of me.

I am not an “I can’t” person but over the last few years I’ve said that more times than I care to admit. I want to be strong again! Mind and body. It’s so frustrating to try to get stronger only to be met with Pain as a result. But I’m going to try to figure this out. I’m not likely to kayak anymore this year. It’s getting too cold. I plan to be in some type of workout program. We have a gym in our barn so I have no excuse to at least try. And somehow I have to get into a pool. We have some indoor pools nearby. (Maybe they won’t be too crowded!).

I just want to feel strong again. I still deal with pain and that’s limiting -I have had three surgeries in the last year to try to get rid of it and it’s much better -but there may always be some pain I have to figure this out despite that. It can be done. I know it.

Next spring when I break out the kayak again I want to feel I could cross the bay (it’s a mile). I may not ever try it but I want to feel like I could. I want to no be afraid. I want to be strong.