Doctors

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. 

Some improvements in post-cancer care – and with me too…

If you have read my past blog posts you know I have dealt with four surgeries since fall of 2016 to deal with the pain I ended up with after breast cancer treatments.  My last surgery in Feb of this year was a grafting surgery and it has involved a long recovery mixed with many months of PT.

So here I am almost 6 months out and I have been working hard in PT to get this arm moving. I have found an incredible PT team that is well versed in my issues and have been specially trained to deal with them. The program they follow is called ReVital and it is a Rehabilitation program for cancer patients.  It encompasses many forms of rehab- not only PT. Though some cancer centers already have rehabilitation in house some don’t and these participants are highly trained to deal with many issues during cancer treatments and well after.

There are so many facets to cancer- – fighting it being one – recovery being another – and  the during treatment and post cancer issues like pain, depression, fatigue, disability etc being another. For so long this latter facet has poorly addressed. But I am seeing and increase in available resources including rehab and also more written about post cancer pain- this implies that more cancer doctors and  pain management centers are becoming more aware of the issues- and the reality of the problem being acknowledged. In addition the cancer doctors themselves are also learning that their patients need to be fully served when they are facing cancer treatments and they are beginning to understand the potential residual effects that these cancer treatments can impose on patients- sometimes symptoms showing up years after treatments end. So now we see more of these docs being proactive in having the ability to refer a patient for help when they begin to complain about their issues.

This is a big deal for many of us who have had to go to plead their cases to doctors who couldn’t understand why we hurt so badly after our treatments. We weren’t supposed to complain. We were supposed to be happy to be alive. And we are- but we need to be heard and believed when we say we hurt after our cancer treatments are over.

I made a mistake after my treatments ended I should have gone right to PT- I did go when I had an odd and very uncomfortable nerve pain show up basically over night.about three months later. Would my pain issue have not occurred if I had don PT before that nerve pain reared it’s ugly head? I don’t know. But I thought when I had ongoing issues that my docs would have had my back. But after PT the issues persisted  on and on and my cancer surgeon scratched her head and kind of pushed me off into the unknown to try to find someone to help me figure it out. I went to numerous – like a lot- of doctors over the following couple years and I got nowhere.

My world came crashing in midway through 2016 when my pain hit an all-time high and I was bedridden. Many doctor doors closed on me then, too many. I felt more alone then I had ever been. I was at an all-time mental low. Then finally when I yet again went to plead with my cancer surgeon for some help and she treated me literally like I had a mental issue and not a pain issue that was the last time I saw her- and I went home despondent.  I was in a very bad place. And it took prayer and tenacity to keep going and finally I found doctors who wanted to help me. Who weren’t afraid to try.

Nobody should have to go through that!  Before cancer I didn’t have the pain – after I did.  Radiation damage is now recognized and talked about in the cancer community and the fact that it can pop up soon after treatment or years later is being discussed more in-depth.  Chemo causes its own long term effects.  We are warned of some of this before treatments begin. Like deer in headlights we are frozen and see the treatments as the only way to get safely off that awful road.

In my hindsight world I would have not gotten radiation after my lumpectomy. I was early stage. Did I really need it? Maybe I would have gotten recurrence in that breast- maybe not. But the pain I have suffered since my diagnosis – 6 years ago now- has been very very hard. And there have been times I had so many dark thoughts. Looking at it in the rearview  -I think I would avoid radiation and take my higher risk of recurrence (because it exists anyway) to avoid the pain. But that is what I have learned and sadly not what I did.

It may be that we who suffer severe pain from our treatments might never find a life that is actually pain free. But what we do need is the support of our doctors when we find ourselves in this very difficult spot. We need medical professionals who can help try to get us to the best version of feeling better that is possible.

I thank God that in the 6 years since I was diagnosed that we are seeing these improvements in this area. I think the surface is only just being scratched and there is so much potential in this area of patient care that I hope we see more and more improvements in the years to come.

As for me – I have made some good progress since this last surgery.  I have been in PT since mid-April and I still have pain but my arm range of motion (ROM) is vastly improved. We have hit a point in trying to improve my ROM where I am getting more pain flares.  I won’t go into all the medical reasons why but they PTs seem to think this is ok. For me it is easy to get nervous and discouraged. It is so easy for me to want to NOT move my arm – or do my exercises – but I force myself.  One thing I seem to do on a regular basis is to overdo things and get pain flares. Many times I don’t even know what I did to flare – that is frustrating.

But I move forward in fits and starts.  We joined a health club with a pool because I have a rekindled love of the water. I was able to get into the ocean and past the breaks in the surf. I did get pummeled by a wave once – that brought back memories. I have kayaked using the paddle sort of- I suck at it – I am very glad to have peddles at this juncture. I have been in the gym doing light workouts and I have ridden my horse. But I have also had a number of pain flares that side-lined me too. There is no straight path and I really still have no idea where I might wind up and I don’t think my forty PT visits my insurance allots is going to cover what I need. So I hope they will extend me.  That can be a battle too.  I have learned not to expect smooth sailing. But I am ever so pleased when something does go smoothly.

Before cancer I was in great shape.  I was strong. I looked fit. And now… well my version of strong has changed- but I have goals – but they have no end dates- I just keep extending them.  I am trying not to be so vain too. I am hard on myself for gaining weight, for aging…I need to give myself a break. I am trying. Trying should be my middle name. I am always trying- even when I don’t think I can move my feet out of the concrete- somehow I just keep trying. …I don’t know where I will end up but at least I keep trying- and that is not a bad thing.

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This is in early July. I have even more ROM on the right side now. This was an exercise that did flare me up. When I began PT I was at about half this range.

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?

 

Recovery and getting help. 

My wonderful husband Kevin has been worried about my surgical recovery in the aftermath of my fathers death.  It takes a long time to recover from nerve surgery and I haven’t been sure how I’m supposed to be feeling. I notice small improvements but then I’ll have a bad day. Physically and emotionally. 

I’ve been a wreck about my dads passing and we are planning his funeral and when you are trying to get family in from out of state and kids in from colleges and high school teens schedules it gets a bit crazy.  So Kevin has taken over some of the calling to funeral homes and to the reception place. I’m sure passing some of this off is a good thing.  Giving up control to others is not easy for me. I’m a good planner but I’m just not up to doing all that I’ve been assigned. My brother and I have been splitting tasks and he already planned the memorial for dad in Florida. I feel I need to really help plan the funeral up here in DC. But I’m going to have to give up some control. I need to heal. 

Since Kevin was worried about my recovery so was I. I encouraged him to write my surgeon. Which he did. And yesterday on a Saturday he wrote kevin -twice-back asking some questions and concerned about how this death and the grief I’m carrying is effecting my recovery. He is a great man. I’m lucky we found him. He asked if I was moving enough. He also wants to see me next week. He thinks I need to get into PT. In a pool. If it’s warm I’m cool with that! 

Kevin told me what my surgeon said so I thought about it. I’m not moving enough I’m stuck. I feel like when I get up I can’t do much and I often end up hurting. I’ve been walking but not enough. I’m not trying. I’m down. 

So I decided to get my butt up. I popped a little more percoset. (I take less than 1/2 a pill a day. I’m so weird about meds.) but the amount I take helps so that’s good. I got my shoes on and I went outside with my phone and just walked around. I took pictures and I took a walk. Then I came back in the house a couple hours later and I didn’t go back to bed until bedtime. I hurt some but I was ok. I felt kind of normal though. Like a person living in my home. Not a patient. 

It’s been easy to just stay in bed BC it hurts to get out but once I do I realize it’s what I need to do. I need to recover physically and mentally. 

I’ve had calls from caring friends. A couple encouraging me to seek therapy BC I have been through so much. My friend Jon told me that he knew I was strong but I had been through more stuff in a short period of time and I needed to seek professional help. I think he worried I might be upset but I so appreciate that he cared. It has been a horrible time and he reached out. I’ve been to lots of therapy so I fully agreed I needed to go. But getting my butt there might be hard. But I decide not to listen to all my buts..  I knew I wanted a person older than I am so I found Polly and she sounds nice and caring and I am hoping to meet her next week. I will be downloading on her (a new term I’ve seen streaming tv shows). She may be on the floor after I finish! 

I’m thankful to Jon for saying point blank “get some help”.  I was in a bad place for a long time even before my dad passed.  Jon ignited a spark in me to get myself together again. I need help to do it. Therapy will be a gift to me. 

So yesterday I took some photos on a gorgeous fall day. I wanted to share them with you. I love fall the the season changing and it reminds me that I am in a tough season of my life but my season will change. But I need to have my mindset right and push my body some to get there. 

Facing surgery. 

Tomorrow is my surgery day. I’m nervous which is normal. I feel a little bad about feeling nervous because I’ve prayed for for so long now for someone to give me some hope to help ease my pain. I finally found that doctor and I should be excited. 

I was excited early on after we got the ok from the doctor that he’d perform the surgery.  But as it’s closed in I’ve become less excited. 

I think in part because it’s surgery and that’s scary but also I want to get my hopes up that it will help reduce my pain a lot but then I’m afraid to get too hopeful. 

I want to be able to get out of bed and live my life.  Last spring I had pain as I’d had for over two years but I was dealing with it   It wasn’t optimal but I had a life outside the confines of my home and bedroom. Now it feels like such a reach to get that life back again. 

I’ve had to get my mind around my reality. It’s been hard. I was steadfast against taking any RX medications. Now I realize I may have to take some medications even after my surgery is over.  I’m taking some meds now BC once you get to a certain pain level ones stealth refusal to take medications is easily changed to give me whatever will make not hurt so much. 

I had never taken an opiate before but I have now. And even at 1/4 dose those suckers work. And I can see why people become dependent on them for pain relief and I can see how they can be used recreationally causing addiction. They make you feel good. So far I’ve only take a total of maybe 4 pills in all the months I’ve be feeling badly. I didn’t want to become needy for them. I so take Valium which for some reason helps my discomfort but I take that sparingly as welll.  I wonder after surgery where I’ll be with this. Directly after I’m sure to need pain meds. But I won’t know about the long term for a while. 

 After breast cancer surgery I didn’t take anything for pain and the pain was bad but doable for me. But I’ve read since that It’s good to take pain. meds after surgery as it may lower the existence of pain in the future. It has something to do with the brain and the nerves getting a rest from eacother. In fact in some cancer centers woman are given general anesthesia and a nerve block. This has been researched and it seems it also helps lessen the chance of post surgery long term nerve pain.  

My mind kind of goes everywhere today. I need to shower tonight. I have to be at the surgery center very early and my surgery is early. I have to leave the house before my kids get up. I need to get things ready so I can sleep (hopefully) as close to our departure time as possible. I have to wash my surgical area with some special soap before I go.  I’ll need to take meds before I go. I can’t eat after midnight. So I have planned a second dinner at ten.  Trying to get all this straight while being nervous is kind of overwhelming. 

I’m lucky to be surrounded by people who love me and who I love. I also have my sweet dogs milling around trying to help the take edge off of my nerves. I love how they just live life in the moment except when it’s almost chow time. They seem to anticipate that. It’s nice having my golden Rudy here. He chooses to be with me over playing in the yard with his buddies. He’s gotten a bit heavy -we will work on that with some ball throwing when  i am feeling better. 


Kevin -my husband- has been incredible through this. A better friend and partner I couldn’t ask for. You don’t realize until your sick how much it effects the entire family. This has been a 3 year ordeal. My kids have seen me at my worst through this. And I’m sorry for that. Maybe after this is done and I’m feeling better I can make it up to them in some fun way. 


Right now, I think I’ll do some meditation and prayer. That should help center me I hope. I’ll picture myself whole and walking on the beach.  Or riding my horse. I’ll think of the endpoint -focus on the outcome I  want. 

And maybe I’ll focus on the meal I want after surgery and I’m through recovery. 

I like to eat.  

Thanks to all who have sent me notes and have prayed and thought of me through all this. Keep me in your thoughts and prayers at 7am tomorrow if you can. 

God Bless. 

😘😘