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Chemo plus fibro

I started chemo knowing that it was not going to be good for my fibro but I did not know how bad. I had a PT evaluation this week and for the first time ever I have problems with range of motion in my legs. Usually I am hyper mobile and can go beyond the usual range of motion and for fibro, that’s not good either, but the muscles in the back of my legs have gotten so weak they are now very tight and limiting my range of motion. Plus, the rob flares and all the muscle strength I built up in my shoulders is now gone. I am now worse than when I first started PT over a year ago after getting diagnosed with fibro. The difference now is that I know more about fibro and I know more tools to rebuild myself. I have to find a starting point and a way to navigate through chemo though.

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Finally over did it

Well I made it 11 of my 20 weeks of chemo before I had a trip to the ER. Last week, instead of chemo, I had Chris take me ER. Turns out I had a viral gi bug and bladder infection. I ended up being admitted until early the next night and go back to the primary care office in a few days. Illnesses come with the territory and I did pretty good at making it 11 weeks before getting sick. Just have to make it the rest of the time.

Cancer Advocate

As many of you know, the reason we created this site was to advocate for special needs and disorders.  Once I was diagnosed with cancer, it only seemed fitting to advocate for cancer research and prevention as well. In my cancer research, I did come across us useful page for it. However, I found that Georgia is seriously lacking when it comes to advocating for cancer research and prevention. So much so that I found no state action nor event.  Yes I am working on fixing that.  I already have a few emails sent in.  I do see this as a problem since this topic should be addressed at a national and state level.  That’s my view on the subject.  Explore the site and find out ways you can help stomp out cancer once and for all.

https://www.acscan.org/about

Caregivers

I don’t know what to say for this one other than THANK YOU!  Going in and out of the doctor’s office, clinic, or hospital all the time, helping with whatever needs help, and sitting with us during the hours they mix and give us our medicine.  It would be so lonely without you.

For more information for you guys:

https://www.cancer.org/treatment/caregivers.html

Side effects

Love this resource.  Not only does it list some of the common side effects, but it gives the patient and the caregiver reasons why, what to do, how to help and when to call the doctor.  It even has a section about nutrition for during and after cancer.

One side effect I did not notice is the one where the GI track is inflamed and spasms a lot, granted my doctor said all that can really be done about that one is narcotics and anti-spasm medicine.  That is one of my more fun side effects this round of chemo. So far this round is mostly effecting me GI wise and usually the two or three days after chemo.  This past weekend I was overly tired, though. I’m not sure if it was because I didn’t rest they day I had chemo or the day after or if it was a new side effect. This is only week 3 of 12.

Last round was mostly sensory type side effects.  No, to hardly any taste buds, making everything taste different, horrible, or intense.  I would get mouth/ throat sores, but after an intense day or two, they would heal and I would be okay.  My eyes started to burn a little bit here and there, but it was manageable.  I did loose my hair, but only what was buzzed after our hair shaving party.  Other than that, it was allergies.  I ended up being put on a double dose of Benadryl and a nasal spray just to manage my allergies.

Outside of the current inflammation problem, I think the worst part of it all is how it interacts with fibromyalgia.  If you know anything about the disorder, so of the side effects of cancer are side effects of fibro also, so it is just doubling up on the side effects such as fatigue, memory problems  (chemo and fibro fog), weakness etc.  I have to have my rib cage taped up until I am healed from chemo because we can’t manipulate the bones during chemo and that is what needs to happen when a rib cage is flared.  Tip: do not have fibro days while on chemo.  It will give you another day of chemo side effects even if it is no where near time to have one.

The one side effect that no one likes to talk about is the second cancer.  I’m only 29.  I was barely 29 when I was diagnosed, so I know and understand the chances of not only the breast cancer coming back, but also another cancer may show up down the road.  I don’t live my life worrying about that, but that does change how I look at life.  Being a realistic person, I know that the chances are not high that I will see my girls marry or my grandkids.  Phoebe being 12, I may see her get married.  It means that I don’t live for the future.  I make those just in case plans, but I live for today.

So far, I would say I am very lucky when it comes to the side effects.  Many patients have to go to the hospital at least once for an infection.  Some have to stop chemo because their bodies just cannot handle the side effects.  Most people don’t even know I’m battling cancer, and that’s how I like it.  I like being able to still get out, even if that means that that days house work isn’t going to get done. If I mention it, I do so to raise awareness, not for pity.

https://www.cancer.org/treatment/treatments-and-side-effects/physical-side-effects.html

Cost

Sadly, this is a part of learning and understand cancer.  I don’t share this for pity.  I share this so that people can understand that cancer takes its toll everywhere, including the finances, one area you would hope a cancer patient wouldn’t have to worry.  As much as we hate many of the changes that Tricare has introduced this year, huge raise in co-pays being the largest, we are extremely lucky to be able to get most of my cancer treatments at our local base hospital, which helps with the out-of-pocket costs.  However, our hospital does not have a radiation department and therefore, no network doctors for that treatment, meaning large co-pays here we come.  We know that it is not an option to no do radiation so we will just have to manage the finances and find a way of covering it.  Many people are not as lucky as we are.  In advocating for cancer research, we also strive to help raise awareness to cost that it takes for these families.

https://www.cancer.org/treatment/finding-and-paying-for-treatment/understanding-financial-and-legal-matters/the-cost-of-cancer-treatment.html

Finding Out

Many people have wondered what it has been like to find out that I have cancer and all I really can go into is the details of it all.  As someone else put it today, it sounds like a real whirlwind.

Towards the beginning of March I had my early physical.  My doctor asked how my breast were doing because we found a small lump back in August but by the time I had the ultrasound, it was gone.  I was hurting at the time of my appointment but didn’t think anything of it at the time because I tend to have rib flares with my fibro.  A couple days later I was using trigger point therapy on my ribs when I noticed a large lump near my sternum.  I was in with a doctor before the week was over.  A week and a half later I had my ultrasound.  You know it is not good when the tech and nurse are in and out of the room and no one is talking to you.  They wanted me to get the mammogram right then but couldn’t get the authorization. I did however get on post and a week and a half later and have another ultrasound done along with a mammogram and biopsy.  That was the Wednesday before Easter.

The following Wednesday I got the diagnosis over the phone along with an appointment to she my surgical oncologist, which was the following Monday.  I then saw the plastic surgeon on Wednesday and my medical oncologist got moved up to that Friday.  There the plan of surgery in a couple weeks followed by chemo and radiation got changed to chemo first due to the size and how fast it was growing.

That was Friday.  Tuesday I was in surgery getting my port placed.  Wednesday I had a brain MRI.  Since I have headaches due to fibro, they wanted to be safe and rule out it spreading.  Thursday I had a heart squeeze test to make sure my heart was strong enough for chemo.  Friday I had a CT of my trunk to make sure it hadn’t spread.  Then, Monday I had my breast MRI and I met with the genetic counselor to have the genetic tests completed.  Thursday I had my first dose of chemo.

Like I said, it all happened really fast.  However that is a good thing.  Based on office visits, it was growing a centimeter a week.  Also, the MRI shows that it may have made it to a lymph node and not one that they usually would biopsy.  Since I am already in chemo, I will find out more about that come surgery time.

There really is no one word to describe how it has been.  What I can say is that so far chemo is working.  I know that either outcome I win and the fighting is over.    It’s a healthy out look I promise.  Even my therapist thinks so.  I have the I’m fighting this but just in case mentality.  I was lucky enough to come to grips with it in a short time.

Risk Factors

Although it is good to know risk factors, one can still get the short end of the stick so to speak.  I have no genetic markers for it, a healthy overweight (thanks largely to fibro), and although I don’t run or do intense work outs, I do have to move and stay active in some way because of my fibro and yet I still got breast cancer.  I was an extremely low risk for it, yet I got it and when I did, I got one that would not respond to targeted hormone treatments and was super aggressive.  I am responding to chemo though.

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