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lindsaytothemax: surgery

lindsaytothemax:

I had my surgery almost two weeks ago. I am so grateful and happy to be able to say that the tumors they removed were not cancerous! I am so blessed.

I had to be at the hospital that morning at 5:45AM. I was so scared that I thought I would be sick. My mom & I got there and they gave me a pill…

Great description of another woman’s experience with surgery, and it not being cancer! I am so happy for her!

Chemo Birthday

One year ago yesterday I had my first ever chemo session. I didn’t know what to expect but thanks to the AMAZING chemo nurses I felt safe and comfortable with what was going to happen. That was the first of 18 weeks of three hour trips to St. Louis, 18 weeks of premeds that would make me sleepy, 18 weeks of steroid induced sleepless nights, and bouts of creativity and much more. But oddly enough I wouldn’t change it for the world. It wasn’t bad, yes I had nausea, but I never vomited, yes I was tired, but I only worked when I was called to substitute teach yes I lost some of my hair, but I was my doctors first patient to not loose all of it. And if I hadn’t done it, the cancer would have grown, not to mention we would not have learned that my cancer is most likely resistant to platin chemos.

So to share and celebrate here are some photos from my first chemo.

my IV pump

All hooked up to get the infusions

Komfort just chilling

All done and the only thing I needed was a bandage.

fyoured:

I won’t lie - recovery’s a bitch. You will feel awful, and ‘fat’, and like giving up, a lot of the time. 

But that’s only to be expected.

Living hurts, but living is living, growing, being real.

Being stuck in disorder? That’s not real. That’s not worth it.

Recovery is always worth it. Life is always worth it. 

Such a true quote.

(Source: leilockheart)

Second Opinion

Getting a second opinion is something that you may not think of when you are recently diagnosed with cancer or any medical problem. But when the time is right it is a great tool and asset to use. I decided to trust my doctor a year ago when he talked to me about what he thought we should do. I felt that since he did the surgery he knows what was going on inside me and know how to address it. So for about 10 months I did that. But then my doctor decided to leave the practice he was at, and for me that just happened to hit when I had a recurrence.

I was shocked and surprised that he was leaving, and also scared about the future without my doctor. But looking back now, it is one of the best things that could happen.

Because of what happened, I used my anger to get second and third opinions at the top hospitals in the country. Was this easy? No but know that it is done I am so glad I did it.

So how did I do it? First I looked at U.S. News and World Report and what they ranked as 1-5 for cancer hospitals. I then started calling the hospitals but quickly learned I just needed to call my insurance company and ask them if I would be covered by the hospitals, and I was, from there I got in touch with MD Anderson in Houston and Memorial Sloan-Kettering in NYC.

Once I got information from them, I then had to give my permission and get my current hospital to send different medical records that the hospitals wanted. That involved a form that I had to fill out to get the information to the medical records person and then where to send things.

After that I had to wait to hear back from the hospitals to see if they could get me an appointment with a doctor. Once I got the call that both had doctors I could see and dates on when I could see them I them had to get my surgery slides sent to both places. That involved some flexibility but I was able to get it figured out thanks to someone from Pathology.

The next step was figuring out travel, something that should have been easy but was not, there were differing opinions on how we should travel to MD Anderson.

Finally it was time to go and see the doctors. I went to Memorial Sloan-Kettering first and that trip was more of a sightseeing trip with a doctors visit included. And then with MD Anderson it was more of a medical visit with a little sight seeing.

Once at both offices I had to register, sign HIPPA, and any other forms and then wait to see the doctor and hear their thoughts.

Both oncologists thought that I had been getting the right care and felt that since I did not have any symptoms and felt good that I could wait until August 27th to get my next CT, to see what it shows. Hopefully it will show that I am stable and that my current medication is doing the job of keeping everything the same. But if not I will have three options on what I can do.

So now I wait for my CT in August, bloodwork the following week and a doctors appointment with my possible new oncologist to learn the results and what I will do in the coming months.

It has been a busy two weeks but a very beneficial. I suggest if you want to please do get a second opinion. No matter what you will learn something, and it just might give you peace of mind.

I am now getting ready to go to a leadership conference as staff. I will be gone for two weeks, and will not have any chance if much of one to get on tumblr. But I hope and promise to get back into the swing of things when I get back in mid-August.

My Mom and I in NYC

Dad and I in Galveston.

Travels

My travels are half way done and it has been fun. I first went with some friends to the Mall of America it was a lot of walking but great fun.

Then my mom and I went to New York City to get a second opinion at Memorial Sloan-Kettering, and to see some family. It was great, the more and more I go to this city the more I fall in love. And I got great news from the doctor I saw. I learned I have been doing the right treatment so far, and that I should be able to get into a clinical trial that will hopefully help me, I also need to keep losing weight, and as long as I don’t have symptoms I just need to keep an eye on it. So now I continue the search for a doctor I like. I really liked the doctor I met in New York, and tomorrow I leave for Houston to meet a doctor at MD Anderson so we will see what they say and what I think of them. And then later in September I will meet my new doctor at St. Louis and see if I like her and what she thinks about my case. So more travels and more news to come.

The eve of my 1 year Anniversary

One year ago I was in a hotel waiting to have surgery the next day, I thought it would be nothing major, but little did I know my life would change.

I hope to highlight some of those big days for me in the coming year. Although I don’t know how tomorrow will go for me, right now I already feel the panic setting in, and that tears not far behind.

But for now I will wait to go see fireworks tonight in the heat and post some photos of the fun I had the day before surgery.

We went to the Botanical Garden in St. Louis. I am acting as part of the Lewis and Clark expedition.

Driving away

Me and a Chihuly sculpture

Friends

Friends, not my strongest suit, but something I have always had and thought was important. I had issues with friends keeping them, having enough and much more. So when I was diagnosed cancer my relationship with friends changed. I was “sick” now and death was in the lexicon of world that might come up. But I didn’t think I would become a person with the plague.

For starters it doesn’t help that all of my friends are long distance friends, they live up to 3 hours away and farther. So my seeing them to tell them was not a possibility. So telling my friends I had cancer was not fun at all, all my friends were shocked, but they quickly came back with “you can beat this” or “kick cancers ass”, but those words did not come until I reassured them and let them know I was positive and going to be fine. When I really didn’t know how I was, or if I would be fine. I wanted them to come and visit me, to come to my rescue, but they didn’t.

I have always gone out of my way for friends and others, but now I needed others and they were no where to be found. And that is how it has been, almost a year from my telling friends I have cancer and I still have to go out of my way, no one has come to visit me, all I get are little texts, maybe a phone call, but that is it.

I have even lost my best friend, some one I knew for five years, stood by her during some tough things, but she is no where for me. I haven’t heard from her in weeks, and I just don’t want to fight it.

And I know it is scary, especially because at my age we feel invincible, the world is our oyster. We are in college, and then starting new careers, and to learn a friend has cancer can really shake you. And well it shakes the person it is happening too. 

So don’t run for the hills, or distance yourself, but as a friend do what you can. Ask how you can help, take them to treatments, ask them to explain what you don’t know. Tell them you are scared but want to help how ever they think you can.

Just be there. Enjoy the ride.

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