Hi everyone! I know it's been nearly a year since I last posted and in that time frame, I've had two check-ups. With moving to a new state, I needed to find a new oncologist. Thankfully my cousin had valuable insight regarding gynecological oncologists here in Idaho and I was able to connect with Dr. Z. After having all male doctors during my cancer journey, it has been refreshing to finally have a female doctor. Don't get me wrong, I valued the insight and expertise of all of my doctors, and felt it was time to have a female physician work with me on the long haul. That's what all of this is. The reality of it hit me right between the...well legs, today. I'll explain.
Due to some scheduling issues I ended up not having to drive to Salt Lake, which I had done the last two appointments I had with Dr. Z. She was up here in my neck of the woods today, and so bright and early this morning found me in the shower preparing to do battle with the dreaded duck once more.
As I drove towards my appointment a feeling of anxiousness had me sliding back into the numb-zone where I tune out until the visit is over. The thought of one more pair of stirrups, one more probe (frontal and rear) was just one too many. Ginormous Q-tips, multiple solutions to help see scarring and possible problem areas. How much can one tiny orifice really go through in this lifetime?
I got there early enough that I could sit in the winter sunshine and read, which helps me to relax. When it finally came time to stop my stalling, in I went and the staff was lovely. Everyone greeted me with a smile and warmth. The feeling of peace that you find in most cancer centers quickly overtakes the anxiety and after checking in, I sat in the waiting room and just existed for a bit. I had brought along Christmas lists in order to multi-task, but found myself just wanting to be- and so I did, I just was.
After a short wait I was brought back to the exam room. One of the reasons why I like Dr. Z is she has the exam "chairs" that start out like a large chair with an extended back on it. The stirrups are tucked away which helps slightly. Her nurse came in and got all my updated information, we discussed my failed colonoscopy (the doctors found nothing but the bleeding continues), and other various procedures from the year. I was asked to change from the bottom down, given a white sheet and out she went.
I quickly changed, assumed the position of the patient with no pants, and waited. Waited. Then waited some more. I don't mind waiting in exam rooms anymore. I used to. It used to make me really irritated, but after going through everything that comes after the waiting.....I'm more than happy to wait.
Dr. Z walked in with her bright smile and extended hand, which I shook and then we chatted for a bit. It's nice to speak with her, because I feel like she listens. Her brows furrowed when we talked about what wasn't on the colonoscopy she had ordered. They raised when I told her about continued issues, She told me by abnormal pap was due most likely to radiation issues still, and then it was down to business. Assuming the standard position, I slid my rear as far to the edge as I thought prudent (and after 4 years of doing this on a regular basis, I'm still a bit leery about going to far, for fear I should end up like Tom Cruise hanging on the cliff like in Mission Impossible) and still I was 2 inches short of the desired spot. Sliding a bit more, the stirrups then came out. Luckily I wore my Christmas socks and their stirrups are always warm. Once I was where there was no turning back, Dr. Z brought out a new gadget.
My first response was "It's Johnny 5 from Short Circuit!" This may date me, but it really is what it looked like. She told me the name of the gizmo which I cannot for the life of me remember, but it magnifies everything that she sees when she does her exam with the duck. The duck came out, was warmed, inserted, and looking through the goggles she got down to business. The first solution burned, the second one stung, and finally she stopped. She got a bit of a scowl on her face, and told me I wasn't doing a good job of stretching out the scar tissue at the top of my vaginal canal. She asked me why it wasn't broken yet, I told her simply "I"m lazy and choose life rather than dealing with it." This didn't earn me any brownie points, but she said she understood.
Then it was time for the dreaded rectal exam. Yuck! Double Yuck!! I instantly started to shake and draw my knees together which is a naughty no-no during these exams.
"I'd rather we didn't do that," I whispered with my eyes shut.
"I need to, because I can't see from the one side, I need to try and figure it out from the other." I peeked slightly and saw her discomfort as well.
"Okay." I closed my eyes and when contact was made began to cry, but I didn't make a sound. She stopped immediately and said that she wasn't willing to traumatize me further. Hallelujah!! Miracles do happen!! There are so many issues right now with that area of my bod, that I don't even know where to begin. Her stopping felt like Christmas morning to me.
In short my friends, I am still on the twice per year schedule, which is a bit frustrating, but hey-I'm here. Also, I long for the day that this isn't a part of my life anymore and find peace with not having to think about it more than twice every year. Lastly, I could be more diligent with the dilater, but I have other things I want to do. Yes- I'll try to do better, because the alternative is having them surgically go in and cut it open, which has some serious drawbacks and doesn't guarantee that it won't heal shut again.....
Thanks for checking in on me. I appreciate the continued support and love that I've felt through every step of this wonky journey! Merry Christmas, Happy Holidays and may your New Year be filled with wonderful opportunities!
Always,
Kami
Thursday, December 8, 2016
Sunday, January 10, 2016
A Letter to the Newly Diagnosed....
It is January, and while others are creating and losing the battle with new year goals - I'm sitting down during National Cervical Awareness month to write a letter that will hopefully serve as a bit of guidance in the days to come.
Dear Friend,
I'm starting this letter in such a way- because that is what you are. Sitting there. By yourself. It could be two in the morning, or late in the afternoon and suddenly you feel yourself disappearing behind a diagnosis that you really can't wrap your brain around right now. And so- you are my friend. To be honest, the best advice I could give you in a situation like this; that is so new and so real- would be to walk away from your computer screen, or put your phone down. Google is not your friend right now. It will only fuel the fire of uncertainty and cause you to doubt your ability to fight this. You must fight this. I believe in you and your unfathomable ability to overcome. I. Believe. In. You.
When initially diagnosed I was just told simply that I had what looked to be a cancerous growth. Based upon its location it was easy to identify it as cervical. When I finally began to gather information, I was angry at myself. Angry that I had gone so long without a check-up. Angry that I had been exposed to HPV and didn't even know. Angry that I had no idea what the treatment plan was. Angry that I didn't understand words like staging, and that my body that turned against me. So angry.
Allow yourself to feel whatever you need to feel right now, just don't let it take you down.
As you feel strong enough to begin to research a bit more, recognize that without a detailed diagnosis, and treatment plan by a skilled oncologist- you are self diagnosing and this is not good; well if you have an MD or an RN in this particular area you'll probably be okay, otherwise you are spitting into an inferno when you should be armed with a water tanker. Be patient with the process, and be willing to demand answers, seek second opinions and pinpoint what exactly you're fighting. This helps to eliminate the random searches and worst case scenarios. Once you've been diagnosed and walked through the prognosis, that is when research becomes your best friend rather than your enemy.
Research the heck out of what you've been given. You may just be surprised that there are several treatment options out there. You may be delighted to find that your staging is not as gloom and doom as initially thought it to be. You may just surprise yourself with the amount of strength you gain from suddenly becoming an expert in your diagnosis. Knowledge really is power and you have a wealth of it at your fingertips. Now.......ask questions.
Seriously- ask away! The doctors your speaking with have gone to years of school so that they can share their wealth of knowledge with you. Ask and keep asking until you feel like you could take a test on this cancer and score 100%! What you gain in this first part of your journey will help to keep you on top of your game and will serve as comfort when you feel your world slipping from time to time. I had a friend reach out to me with a website that might be up your alley at this point called Cure Forward. It is an additional information option when you're trying to find out all that you can about what you're up against,
Once you've gathered a treatment plan, or even before depending upon your situation- call your insurance company and find out what they'll cover, your deductible, and payment options. Make sure that this is all clear in your mind before you start racking up the costly treatment bills (if that is where your diagnosis takes you). It is also important to note that most insurance companies will contract with a third party to assign you a case worker that will help track treatments and costs; to make sure that you're being taken care of. Take advantage of this. I was blessed to have a remarkable case worker that took excellent care of me.
Now that you're off to the races, please take care of yourself. Decline social engagements, snuggle your kids more, and just batten down the hatches It really is okay. Take the time to get treated and then get well. This can't happen if you're running around being Super Woman.
Last of all please understand that you're not alone and that help is out there. You can do this. I'm always just an email away and happy to answer any questions you might have, just know that my responses won't be those of a professional medical person, but more of one of a good friend.
Best of luck & all my love,
Kami
Dear Friend,
I'm starting this letter in such a way- because that is what you are. Sitting there. By yourself. It could be two in the morning, or late in the afternoon and suddenly you feel yourself disappearing behind a diagnosis that you really can't wrap your brain around right now. And so- you are my friend. To be honest, the best advice I could give you in a situation like this; that is so new and so real- would be to walk away from your computer screen, or put your phone down. Google is not your friend right now. It will only fuel the fire of uncertainty and cause you to doubt your ability to fight this. You must fight this. I believe in you and your unfathomable ability to overcome. I. Believe. In. You.
When initially diagnosed I was just told simply that I had what looked to be a cancerous growth. Based upon its location it was easy to identify it as cervical. When I finally began to gather information, I was angry at myself. Angry that I had gone so long without a check-up. Angry that I had been exposed to HPV and didn't even know. Angry that I had no idea what the treatment plan was. Angry that I didn't understand words like staging, and that my body that turned against me. So angry.
Allow yourself to feel whatever you need to feel right now, just don't let it take you down.
As you feel strong enough to begin to research a bit more, recognize that without a detailed diagnosis, and treatment plan by a skilled oncologist- you are self diagnosing and this is not good; well if you have an MD or an RN in this particular area you'll probably be okay, otherwise you are spitting into an inferno when you should be armed with a water tanker. Be patient with the process, and be willing to demand answers, seek second opinions and pinpoint what exactly you're fighting. This helps to eliminate the random searches and worst case scenarios. Once you've been diagnosed and walked through the prognosis, that is when research becomes your best friend rather than your enemy.
Research the heck out of what you've been given. You may just be surprised that there are several treatment options out there. You may be delighted to find that your staging is not as gloom and doom as initially thought it to be. You may just surprise yourself with the amount of strength you gain from suddenly becoming an expert in your diagnosis. Knowledge really is power and you have a wealth of it at your fingertips. Now.......ask questions.
Seriously- ask away! The doctors your speaking with have gone to years of school so that they can share their wealth of knowledge with you. Ask and keep asking until you feel like you could take a test on this cancer and score 100%! What you gain in this first part of your journey will help to keep you on top of your game and will serve as comfort when you feel your world slipping from time to time. I had a friend reach out to me with a website that might be up your alley at this point called Cure Forward. It is an additional information option when you're trying to find out all that you can about what you're up against,
Once you've gathered a treatment plan, or even before depending upon your situation- call your insurance company and find out what they'll cover, your deductible, and payment options. Make sure that this is all clear in your mind before you start racking up the costly treatment bills (if that is where your diagnosis takes you). It is also important to note that most insurance companies will contract with a third party to assign you a case worker that will help track treatments and costs; to make sure that you're being taken care of. Take advantage of this. I was blessed to have a remarkable case worker that took excellent care of me.
Now that you're off to the races, please take care of yourself. Decline social engagements, snuggle your kids more, and just batten down the hatches It really is okay. Take the time to get treated and then get well. This can't happen if you're running around being Super Woman.
Last of all please understand that you're not alone and that help is out there. You can do this. I'm always just an email away and happy to answer any questions you might have, just know that my responses won't be those of a professional medical person, but more of one of a good friend.
Best of luck & all my love,
Kami
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