11/30/14 - Another "Crazy Town" Story

My master bath has its own little room for the toilet. The sink, shower and tub are all in the same room. At night when I have to use the bathroom, I always turn on the closet light which is right next to my sink. This way I don’t have to turn on all the lights above the sink. They are very bright and there are a lot of them. I do this so the brightness doesn’t wake up BudBud. Being the OCD person I am, I always wash my hands after using the restroom – even In the middle of the night.

One night last week, I was doing my usual ritual and I caught a glimpse of a big blackish/brown mark on the upper left side of my chest.  This thing was huge. I could feel my heart beating out of my chest when I caught a glimpse of it. I’m sure many of you will know what I’m talking about - that feeling of dread.  I ran my fingers over it and it felt raised. I couldn’t imagine what it could be – it was SO big. I thought, “oh great, here we go again, now I’ve got skin cancer.” Then I decided to risk waking BudBud up by turning on the millions of lights above the sink. Then I got a closer look. OMG……it was a piece of chocolate from a cookie I had eaten earlier!!!!! Apparently it had melted into my chest and I went to bed that way. Can you imagine?? Now if that doesn’t give you a good laugh, I don’t know what will. CRAZY TOWN.

I’ve got an appointment tomorrow afternoon with my Breast Surgeon and a scheduled Bilateral Ultrasound on Wednesday morning. I’m anticipating a lecture about my refusal to have a mammogram. Mammogram has not caught ANY of my breast tumors. I’ve found them all myself. I’ve decided they are pointless, and I don’t want to expose myself to the added radiation. This has not been a popular decision with my doctors. They scheduled a bilateral ultrasound about a month ago. I drove an hour just to get a call when I was pulling into the parking lot telling me they can’t do an ultrasound without a mammogram. I was not a happy camper after driving all that way. Next, I was told I had to file a grievance in order to have the ultrasound approved. When I did this I got about 200 calls that week (exaggerating) from various people. They wanted me to give a phone statement – blah, blah, blah. I said, “I’m not giving a statement - I’m refusing a mammogram – I don’t have to have a test I don’t want. If you don’t want to give me an ultrasound instead, DON’T. I’m still not having the mammogram.” Next I got a letter denying the ultrasound which was fine by me. Then I got a call the following week to come in for an ultrasound – SERIOUSLY?? I let them know that I received a letter saying they denied my ultrasound. I guess my breast surgeon told them to do the ultrasound. She said it’s better than nothing. I really like that lady. It’s amazing to me how the system tries to bully you into a mammogram. I can understand the need to have one if it worked, but for me it doesn’t. I’m sure getting surly in my old age.

I’ll let you all know how it turns out.

Cheers,

Beppy  ツ

11/28/14 - The Mind of a Cancer Patient – Written on 11/20/14

I've gotten some emails asking why I haven't blogged in awhile. First and foremost, I've been having a huge RA flare making it difficult to sit at the computer for any length of time.  Holding my neck up has been a chore. Unfortunately, I’ve had to take pain pills while waiting to get in to see my doctor. Many of you know how much I detest pain pills, but a girl's gotta do what a girl's gotta do.

Logic tells me it's just a flare up. My Rheumatologist warned me to expect a big one after treatment. I'm also having problems with my wrists, fingers, hips, feet and knees. I'm used to flare ups, but the intensity of this one is pretty severe. Normally I wouldn't think anything of it – after all, I just had a bone scan. But when you enter the wonderful world of cancer, every ache and pain becomes a suspicion of metastatic disease – a paranoid thought process. Now I will elaborate.

Today I discovered two pimples and swelling on the tip of my tongue. It hurts to eat....not that I'd let that stop me - as evidenced by my 50 pound weight gain. Now this is where a cancer patient's mind will go. My very first thought is oral cancer. On our online support board, the first advice we give is not to use Dr. Google, but do I follow that advice???? Of course not!! Here I am in the middle of the night, frantically Googling “mets to tongue.” Is there such a thing?? To my horror, there is, although it’s rare! Being the queen of rare lead me to keep Googling. NOT TOO SMART. I read that tongue mets can also be a sign of bone mets. And let’s not forget my swollen glands that I STILL HAVE. So now my RA pain suddenly becomes much more sinister. I can’t sleep, and now I’m convinced that my cancer has metastasized, and it's flowing through my body, coming out my tongue, and I probably only have three to six months to live according to Dr. Google.

Doesn't seem too rational huh? I call it going to crazy town. I usually end up in crazy town in the middle of the night when everyone is sleeping. There’s no one around to pull me back from that ledge. Sure, I could wake up my snoring, sleeping husband, but why should I expect him to visit crazy town with me??? In the cold, dark, lonely night there are no trains or buses ready to take you out of crazy town. So I alternate from my bed to the mirror, examining the pimples and swelling. Then the little flashlight comes out, and I check the pimples from every angle. Do they match the picture on my Google search??? Have these swollen glands been neck cancer all along??? Are those sinus infections I kept getting before my diagnosis related??? Maybe I should have had that MRI after all.

That's the life of a cancer patient – at least this cancer patient. I think I'm going through the normal paranoia stage that we ALL go through. I tell myself that so I don’t feel so batty. The difference is I have the added benefit of trying to decipher an RA flare from progression, which is not an easy task. Another BIG reason for no blog posts – me trying to spare you all from my paranoid ramblings. Be careful what you ask for!!

I’ve decided to follow the two week rule. If the pimples and inflammation aren't gone on my tongue in two weeks, I'll mention it to my doctor. It's quite comical really. Pre BC, I wouldn't have given tongue pimples a second thought! Now I'm planning my last holiday. So if you've had a cancer diagnosis, maybe you can relate. Or, perhaps I’m just a total loon. For those without a cancer diagnosis, I hope you can see the absurdity of it all.

Aren’t you all glad you checked on me??

Cheers,

Beppy ツ

UPDATE 11/28/14:  Pimples went away – still a slight bit of swelling. I’ve also been put on a short course of steroids, and the RA is getting much better than last week. I hope the paranoid phase passes quickly – it’s exhausting. Ha!

P.S. Too tired to check for typos. Hopefully my proofreader will get back to me soon.
 

10/17/14 - Too Funny!!

I really love the Onion.

This gave me a well needed chuckle, and boy did they hit the nail on the head.

http://www.theonion.com/articles/susan-g-komen-foundation-launches-space-probe,37202/

Happy reading!!

Cheers,

Beppy

10/2/14 - Think Before You Pink

If you follow my blog, I'd appreciate it if you'd take the time to read this article:

http://www.huffingtonpost.com/karuna-jaggar/think-before-you-pink-sto_b_5910696.html


Please spread the word.

Love to all,

Beppy

9/9/14 - Bone Scan Clear

Just a very quick update on my bone scan results. While my RA has progressed quite a bit, there was NO sign of cancer. I can't tell you the relief I felt. It's become difficult to determine which pain is RA related and which is not. I hope to get better at that in the future.

Thank you to all of my family and friends for sticking by me this past year. You have no idea how much that has meant. When I get a little more time, I will write a longer blog post to catch you all up.

Thanks again for your continued support!!

Love to all,

Beppy

8/5/14 - ENT Appointment

Just a quick check in. I had my ENT appointment today and got some GOOD NEWS. After much poking and prodding the doctor determined that she doesn't think the swelling is caused by cancer. She thinks the swelling is due to my RA and chemo treatment. The swelling is movable which indicates no tumors are present. She also pulled a huge piece of wax out of my ear - YUK!! I was so thankful that she didn't want to stick a needle in my neck. The next step is my bone scan which I still haven't scheduled. I guess I better get on that straight away.

Thanks for checking on me!

Cheers,

Beppy

7/29/14 - ER Visit

Over the weekend we went to my daughter's to visit. During the visit my lower back on my right side started to really hurt. I've been complaining of overall pain to my MO, which is one of the reasons he stopped my Herceptin infusions. On the drive back from Robyn's, my pain got progressively worse. When Sunday rolled around nothing was improving. By Monday morning, I was in agonizing pain. It's not too often that I will describe my pain as a 10, but Monday morning, I couldn't move. It took me hours to get out of bed. At the same time, I was trying really hard not to go to "Crazy Town", thinking it was a progression of my cancer. I visited that town far too often during my NF diagnosis. I'm trying so hard not to repeat the past. Once you're diagnosed with cancer though, any real pain you feel automatically goes to that thought.

When Bud called me, I was in tears it hurt so badly. He encouraged me to call my MO. I left a message and got a pretty quick callback. The MO was concerned that it may be a spinal compression and instructed me to go to the ER or Urgent Care. We decided to go to the ER even though it was almost an hour drive. We figured they were better equipped to handle anything that popped up.

Me in the ER - Such an attractive picture - 40 lbs. later.

As soon as I arrived they got me back to a room quickly. They weren't able to get in my chemo vein (I had a feeling that would happen), so they started an I.V. where they typically take blood tests. My first drug was Dilaudid. I've never had that before, but boy did it make a huge difference. I went from a 10 on the pain scale down to a 5 in no time at all. They also gave me a fast acting anti inflammatory in the I.V. - I forgot to ask what that was. Once medicated, they took me to have an X-ray. My ER doctor was wonderful. She told me they didn't see anything to indicate that it was a spread of my cancer. It was her opinion that I have Sacroiliitis which is an inflammation of one or both of your sacroiliac joints - the places where your lower spine and pelvis connect. She believes it's caused by my RA. I've had hip pain due to RA before, but never to this degree. Only a cancer patient would be thrilled by the prospect of an RA spread. My MO ordered a follow-up bone scan just to be on the safe side which I will probably do this week. Once I got my diagnosis, they gave me an injection of Depo Medrol in my butt. I was in the ER for about four hours. When I left my pain level was down to a 3, and boy was I feeling loopy. The ER doctor prescribed Percocet, but so far I haven't had to use any pain medication. I'm very leery about pain medication because I was addicted to the Oxy they had me on when I had my NF, so I try to avoid pain medications as much as possible.

I am feeling so much better - I'm able to sit up again!! The shot I received is even making my knee swelling go down too. Therefore, I’ve rescheduled my appointment with my RA doctor. I’m all for anything that can delay or cancel my knee’s being drained. It’s amazing how sitting up can make a person feel so good! Today is a much better day!! Still have to deal with the swollen glands in my neck, but I'm hopeful it will have something to do with my RA, or a general side effect from chemo. That appointment is scheduled for next Tuesday.

Thanks for checking on me!

Beppy

7/23/14 - Herceptin Infusions Stopped Early Due To Side Effects

On July 14^th I had an appointment with my surgeon. I was experiencing pain and inflammation under my left arm (cancer side), and also felt a small lump. Basically I’ve been feeling worse with each week that passes while on Herceptin. The inflammation throughout my body has been out of control. My knees are really swollen, as well as various parts of my body. After two rounds of antibiotics, I also had unresolved swollen glands. She examined me and then ordered an ultrasound and MUGA scan. She was worried that my severe weight gain may indicate heart problems caused by Herceptin.

Thursday, July 16^th I had both tests. During my MUGA scan the technician had a difficult time finding a good vein. She was able to do the first shot (caused a ton of bleeding), but was unable to get in the second time. Therefore, she had to use my one good vein which we use for infusions. When giving the injection, a big bubble formed inside my vein. I was hoping she didn’t blow out my last remaining infusion vein. My surgeon informed me via email that my ultrasound test was negative. That was really great news, but still left me with unanswered questions. Why all the inflammation and pain? Is it my RA? Beginning signs of lymphedema?

Yesterday I had a visit scheduled with my Medical Oncologist before my infusion. We discussed my side effects while on Herceptin and how bad I’ve been feeling these past couple of weeks. We also discussed the results of my MUGA scan as well and my ultrasound results. My ejection fraction went from a 66 to a 61. Originally I thought it was 65 at my last scan – guess I had that number wrong. While that is still within normal range, he said it was a considerable drop from my last MUGA scan. He also said that Herceptin could be contributing to my weight gain and well as my inflammation. The truth is I have had quite an appetite, but not enough to justify the 40 pounds I’ve gained. YES, you read that right……40 POUNDS. He thought it was time to go off of the Herceptin. Because I only have three more to go, he thought the side effects were beginning to outweigh the benefit of the remaining treatments. I’m a bit nervous about stopping early, but originally my second opinion doctor only wanted me on Herceptin for six months. It remains to be seen if going off the Herceptin will help with the problems I’ve been experiencing.

My MO referred me to an ENT specialist for the swollen glands. He doesn’t think the cancer has spread, but he wants to make sure. He said the ENT would most likely biopsy the glands. I have an appointment with my Rheumatologist next week to drain my knees. I’m sure she will want to give me a depo medrol injection too. I’m allowed to get two of those a year as needed.

So, my treatment for breast cancer is officially OVER. I think that may take a little while to sink in. It’s weird to be finished with treatment so abruptly, but I must say, I’m thrilled at the prospect of not being poked every three weeks. Fortunately, I never had to find out if my vein was messed up. I’ll keep you all posted once I have my ENT and Rheumatologist visit. Thank you for your continued support. It’s really made a tremendous difference through this whole process.

Thanks for checking on me!

Beppy

7/22/14 - Healthline Article - Understanding How Biologics Are Used To Treat Rheumatoid Arthritis

I got a request from Healthline to post this on my blog. Typically I don't endorse articles or products unless I believe it can have some benefit.

Healthline published an overview of a Consumer Reports' evaluation of treatments and medications for Rheumatoid Arthritis.  This is highly valuable information as it provides RA patients with an understanding of how biologics are used to treat RA. 

http://www.healthline.com/health/consumer-reports-rheumatoid-arthritis 

Due to my Necrotizing Fasciitis diagnosis while on Enbrel, I am no longer a candidate for biologics. While Enbrel helped my RA considerably, I fell into the 13% of patients that developed a serious infection. If you are a candidate for any of these medications, please read this article.

Cheers,

Beppy