The Saga......

[Joppette]

This is an email I sent to a dear friend that I can trust, and just needed to UNLOAD ON:

My head is spinning, and I’m all talked out and so tired I can barely function. So, read at your own risk. There’s no advice (I think) you can give. I just am beyond frustration and need to chronicle this. Perhaps I’ll print it out so my husband can see the craziness and maybe intervene because I just am one big wreck, flying from just laughing so hard at life’s absurdity, to feeling so dejected that I don’t know what to think or do.

Like I said I’m all talked out. When people ask how I am I just want to walk away. I don’t want to vomit the stuff going on, and I don’t want to fake it like I’m just fine. And I’m confused.

In 2000, while in NYC, I had to lift a weeks worth of luggage over the subway chain link fence, and got the 2nd of five hernia's in my belly. The first was when I was a child, the rest after this incident. Each repair got complicated, and required another repair. Today I just live with a bulge to the right side of my umbilical, and try not to lift too much to irritate it.

Then there was the lung cancer. Obviously a horrendous thing. The side effects of the chemo and other drugs plague me to this day.

Then the complicated foot surgeries. I had four of them a long time ago to remove cysts. Then I had huge cysts on the bottom of my foot which were removed with a 3% chance of them returning. This was before my lung cancer DX. But of course the cysts returned, and they had to remove the ligament that makes up the arch of our foot. What followed was acutely painful spasms, that I think are caused by walking strangely due to the damage done to the foot. Thus I’ve been sent to several physical therapists who try to help me walk normal, but can’t because most of my left foot is numb, and it’s hard to walk right when you can’t feel most of your foot.

I was still thinking the spasms in the body are from the foot stuff, I endure it until it gets so bad that at a church gathering a friend who is a paramedic, almost dragged me into an ambulance because I was writing in pain because of the spasms.

Take it back to the PCP. He begins to send me to Neurologist, Muscular specialist, and Rheumatologist. Muscular specialist prescribes Xanax, and it helped a bit but I was in a complete fog all the time. Not the right solution. Neurologist decides to put me on a medication for MS patients, also for people with spinal cord injuries. I notice immediately that the medication is making my heart (which has a damaged (inherited) heart valve)skip beats in a wild way. He says to stay on the medication but cut the dose back a bit. Does not help with the heart palpitations. But he told me to stay on it because if this medication didn’t help, the next medication would probably help with the spasms, but leave me basically feeling like a Zombie. Not my style.

In the meantime, I’m waking up every single morning with my foot that has had six surgeries on it, in total spasms with the arch like a brick wall, and the toes stuck straight up and the ankle jutting out sideways in a bizarre manner. I know this is not related to the other spasm issues, but because of the severity of the foot surgeries, my foot is absolutely nerve damaged and because most of it is paralyzed, it is spasming like you can’t believe, EVERY SINGLE MORNING. I wear a boot to bed on one foot, and a shoe on the other because that foot is also genetically damaged and without further serious surgery can’t be corrected. Not about to have more surgery on the foot that is fairly okay.

NEXT…..time to see my Oncologist, which I did Friday this past week. He asks how things are going. I tell him about this medication I’m on for the spasms, and that it’s giving me bad headaches, heart palpitations, and makes me dizzy and nauseated. He immediately orders a CT scan to make sure the cancer has not spread to my brain!!!!!!

Now today I have not heard back on the CT scan, so that is in the back or forefront if I’m honest of my mind. My PCP calls and asks me to come in because my blood work had some irregularities and my blood pressure is too high. So I saw him today. My blood pressure is too high, and he listened to my heart for a very long time and asked for his nurse to come in and do an EKG. The nurse is doing this and asking me to stop wiggling, as the EKG is very irregular. I tell her I’m not wiggling, and so she stops and watches me for like five minutes to make sure I’m not wiggling. Then she hurries out with the report to the doctor.

He comes in and says my heartbeat is not normal in any way, and he is very worried about that. He doubles my inderal heart/blood pressure meds, and says to take them for two days, and if my heart does not regulate, to stop the spasm medication, and then if my heart is still not right on Monday, I have to go to a Cardiologist immediately.

So I go to the pharmacy, and ask him to fill the new inderal heart medication, to which he responds, how is your asthma (born with it)? I said okay, and he cautioned me that inderal can cause asthma to become much worse, so to be sure to watch it and have my fast acting inhaler available in case I have an asthma attack as a result of the increased meds.

And, here I sit waiting for my Oncologist to call to tell me if my cancer has spread. I can’t stop the spasm meds because the spasms are horrid, my heart is skipping beats and totally not keeping up with the music in the band, and I see the foot doctor tomorrow to get cortisone shots into the arch of my foot to try to stop the spasms that are preventing me from sleeping.

THIS IS INSANE.

I don’t need a sensible response to this, as there is nothing sensible about what is going on. I just needed to vent. Vent. Vent. Vent

\So frustrated. Just want to get all the docs in a room with a big white board and start drawing symptoms, and meds, and docs and ask them all to work together for Pete's sake@@@@@@@

[jaminkw]

Judy, that was quite a read! I can't even imagine how it must be to be you right now. With a medical history and present like that, it is amazing that you can go on with such an upbeat attitude most of the time. I agree tho that faking it some of the time is o.k., even good maybe. But once in awhile you have to let it all out. Talking it out can really help and I hope sharing this email did for you. I firmly believe in saying it outloud and also from time to time saying to my husband, "I want to whine." His response is usually something like, go ahead, you deserve it.

Judy in KW

[Kasey]

No advice here, Judy. I'm around reading here all the time - just have not much to post about. I've read ALL your posts and all I can say is how badly I feel for you. I am frustrated for you. I am mad for you. I thought I knew what having multiple maladies was like as I suffer from many myself. But you, dear girl, have me beat hands down.

You are so right about not wanting to talk about it or wanting any responses. It is just important to get it all out there and look at it. I cannot imagine trying to cope with these issues you have on a daily basis. It just makes one wonder what the he#@ these doctors are doing - seems nothing at all.

So............no answers or even suggestions becuase it seems you've gone down every road possible to resolve some/any of it all. But I've heard you and hear you pain and frustration. So if it helps at all, I am frustrated and mad too. Maybe having someone help carry all the rage you must feel in some way will help. Glad you said it all out loud.

Know that you will be in my thoughts and please keep us updated. I'll try to remain hopeful that something can be done about something. Just really sorry.

Kasey

[Joppette]

Thank you Judy and Kasey. It really did help to just pound the keyboard, and chronicle the craziness that is going on. I slept (for the first time in days) like a baby last night, and I'm sure it's because of my lovely and furious rant! Ah!

New day.....

[Bud Baker]

Sorry you have all this going on, Judy. Oncs are, indeed, quick to order scans when you have headaches. When gemcitabine gave me a severe headache, I was sent off for an mri of my head.

I can't imagine all those hernia and foot surgeries. My own one umbilical hernia surgery ended up being a positive by contributing to my lung cancer being found early. How crazy is that?

Hang in there, Judy! I'm sending positive vibes your way!

[Steff_1959]

Judy,

I am so sorry to hear about what is going on!! My God, with all that you still found it in you to read my posts and encourage me!! Hang in there..cyber hugs and good thoughts being sent to you.

[BreathEasy]

I can't even begin to imagine the pain you're going through. When I read your story, I have to step back, look at my life and appreciate the things that are positive in my life. What an unbelievably upbeat attitude you have despite all that's going on -- God Bless You!

I hope and pray that things get better. You have every right to rant!!! Why keep stuff bottled up? You a very strong! God bless!