Happy Dance

So there it is... the end of treatment.

Who can't be happy about this?

My lump biopsy was clear of cancer. It would seem a previous lumpectomy scar there is the culprit. Apparently radiation hardened it to the point it is indeed a lump. 

So... YAY!

In other, most incredibly good news, is the fact that during the past week I had some blood work done. this showed Hypothyroidism!! Yikes, but it's okay because with my very first dose of thyroid medication it was like a dark veil lifted. I'm not kidding, it's freaky! I feel so much better, have more energy! It's going to take my body awhile to catch up with the energy I have, but wow! I can't even tell you how much of a difference it's made. Hormones. Who knew!!?! This is a side effect of radiation therapy! Yep, trying to kill my thyroid!

The only down side of late is during our vacation to the San Juans I started having some knee issues, turned out to be joint effusion, or, "water on the knee." It was termed mild. Mild, yeah, I had to use a cane and at home a walker. Right, a walker. Oh, the indignity of it all! But, it seems I'm finally on the mend. I actually hobbled around yesterday without a cane at all. We'll see how I do as the steroid dissipates. 

Now, it's on to oncology visits every three months for awhile. 

And more importantly... life! 

I have a long way to go to build up strength, it's been a long 18 months of treatment that has taken an incredible toll on my body. But, I have garden plans!

GAME ON!!!

My Story With a Twist!

Nutshell Version

The picture of me above is pre cancer treatment. I don't look like that now, though I'm still working on my post cancer look. You know... I'm left to figure it out, tabula rasa.






I had my last chemo today, YAY!!!  Well, that's the hope anyway. 

You see, 2 weeks ago I found a new lump in my right breast.  

What will be next is an ultrasound, they can't do a mammogram on that breast because of the pain. Hurts really bad! Now, it's true, it could be anything. Either way the wait is on. The nurses in the chemo lab were like- are you okay? You're so calm! My answer? 

Either way it goes good or bad, I'll just do what needs to be done, I can't expend energy worrying. 

I also need another treatment ending echocardiogram. A follow-up appointment to talk about outcomes and then visits every 3 months for about 2 years, and every 6 for a total of 5 years. She said the words ->  We have to watch you closely, you are a very high risk for reoccurrence. 

Okay.

So, that's the twist... the end of treatment and a new lump. I'll spare you the expletives.

I started this blog about 3 weeks ago, wanted to tell the short story, so here it is.

I've been the cancer subterranean warrior for almost 2 years now. 

Thus, here is the story... On April 1st, 2014 I woke up with excruciating pain in my right nipple. I also noticed my areola was fading in color. Honestly, I thought it was just mastitis, so did my PCP, I was given antibiotics and things did improve. She had the good sense to send me to a breast specialist though, since there was blushing on my breast as well. After a fiasco trying to get in to the specialist (I won't bore you with the details) I finally saw her, we did a breast cancer self assessment, mine was at 18% I think, this surprised her because she didn't think it should be that high. We decided with ethnicity and prior lumpectomies that it boosted the percentage. We did an exam, talked, she didn't think I had cancer. I was told to go off coffee and chocolate which I did. I also had a diagnostic mammogram (different than a regular one), it found a lump, right breast, at 4 o'clock. A small one. We then prepared for a lumpectomy. She suspected the outcome would be good at Stage I.

August 28th, 2014, I had the lumpectomy. The tumor was removed and what she found was not only that tumor, but a secondary cancer that clearly invaded the entire breast and lymph nodes. My nodes were "hard little rocks." They took the tumor, biopsies at several different sites on the rest of the breast, some of the lymph nodes there, and  in my arm pit.

The biopsy came back positive for invasive cancer throughout the breast. I wanted my breasts removed, both of them. The doc said no, I needed to be chemically treated immediately, no wait, we could talk about it later. I was suddenly pushed to Stage 3.

In September, I was referred to and met with an oncologist who I liked right off. As I've said in other posts, she was no frills, to the point, informative, bottom line. The first thing we did was get a PET scan. She wanted to retest the biopsies for particulars, and I signed the form. 

The PET was clear, we got the info back on the biopsies and I had: Estrogen receptor-positive, Progesterone receptor-Positive, HER2 Positive (that was negative on the original report, it depends on the type of testing you do, we did different ones the second time). The lymph nodes in the breast were positive. The secondary cancer was positive, rare, and highly aggressive. Axillary nodes were all positive, and showed the tumor cancer, plus a growth pattern not seen in the primary tumor. Can I just say... YIKES!

She was going to treat aggressively, as if I was a Stage 4. Though the PET was clear, my lymph nodes were the superhighway to my body and even though there were no tumors or other lesions elsewhere, that didn't mean cancer wasn't already there to cause trouble. 

Prior to chemo you get a PET, Echo, blood work.

I started chemo on October 3rd 2014, and this is what Stage 4 breast cancer treatment looked like:


First of all, my very first infusion was done by IV into my left arm, I didn't get my port until after. I now have a vein in my left arm that's pretty much destroyed, hard, and a little painful if I move my arm certain ways. This is just one of the many... we'll talk later...

The first 3 months:


Weekly infusions of Cytoxin and Adriamycin, along with these also came infusions of Zofran for nausea, Benadryl for nausea and allergic reactions, other meds  for the stomach and as needed meds. During this time life was about nausea, diarrhea, bounding heart, swelling of ankles and feet, puffy face, poor vision, abdominal pain, throat swelling. Fatigue... oh the fatigue.



The very end of December brought on a whole new chemo regime for another 3 months of Taxol, Herceptin, and Perjeta, along with the other assorted meds as mentioned above. Fatigue, anemia, mouth sores, diarrhea (at this point was just... water). Tight chest, shortness of breath. Muscle pain. This is also when "chemo brain" stepped in and made itself obvious.

I was working at this time, but barely making it. Once I started chemo I was never able to work a full week. Way too sick, and then I started forgetting things at work. I had to finally give it up mid-February.

The biggest challenge I had at this time was neuropathy in my feet and fingers. It was hard to even walk, or be vertical. 


The neuropathy got so bad I went to bed crying in pain, waking up in pain and crying because I didn't want to have another day. I no longer wanted to participate in life. I got my PCP involved and she faxed a letter off to my oncologist who then FINALLY took me off the Taxol. The neuropathy was up to my knees. We switched to Abraxane, this milky looking stuff, it's not so hard on the nerve sheaths apparently, but the damage was done.

I lived on chocolate milk during this time... well that ebbed and flowed, but I had just spent 3 months with no sugar, no fats... couldn't tolerate them. You do what you can.

April on was just about Herceptin. In June I started Exemestane, my daily-for-5-years pill. This makes me sensitive to hot and cold. Let me tell you, when too warm, the hot feels like bugs all over my body biting me. Not even kidding. Horrid! This apparently is normal.

June and July, 2015 was also radiation. This was easy until about week 3 or 4 when the burns started coming out. I spent the hottest summer in Washington with 2nd degree burns. I didn't even go out of the house in the month of August. Way too painful- neck, arm pit, under breast, mid chest. Radiation does incredible damage as well. Breast tissue can take it pretty well, chest bones not so well. We will hope for the best. I do have great bones!



From October 3rd, 2014 to May, 2016, I felt like ->

The Aftermath

Cancer is simply not done when treatment stops. There is physical and emotional wreckage. There is enormous grief and tears. There is Post Traumatic Stress Disorder. There are physical limitations. You are emotionally different as well. You become a different person, you were forced to become a different person. 

The biggest fear for the rest of your life is returning cancer. I have a friend who knows this one all too well as she has gone through 4 cancers now. The Exemestane I take is a daily pill for 5 years that attempts to keep roaming cancer in your body in check. You see, cancer cells like to hide and activate at will (what key slips into that lock? I don't know). I only hope it works, so in the next 5 years there will be a little worry, and then I will be afraid again in 5 years when the drug is stopped. I'm saying this even though I'm not really a worrier, but I'm also not going to deny it's presence. Every person who ever had cancer shares this same perspective. One day at a time.

In the wake of chemotherapy and radiation my body is a bit of a wasteland. Radiation left scars, highly pigmented skin, breast and chest adhesions, there is breast shrinkage and the texture is indescribable. 

I have scars, from surgery, port, and past lumpectomies.

I can no longer have blood draws from my right arm, that Lymphedema is a funny thing, mild now, but something as simple as a blood draw, a rose thorn scratch, could tip the scale.

I continue to have issues with neuropathy and am now on meds for that. I take a pharmacy of pills. Neuropathy... (dear God, please, let this improve with time) feet and hands are a little better but... sheesh. 

Physically, there is also residual joint pain and inflammation. Tenderness in the breast and arm pit. 

My brain. I'm Special Ed Ramona. I'm fine with a couple of bits of information... but after that, its too complicated, and I can't put them together much less remember them. Explaining complex things to me I can follow for a short way... Example: my PCP explaining what was going on with me... understand? No. Explain again, understand? I'm sorry, no. Explain again... frustration... I can't get it, it's my brain. Pre-chemo I would have understood, I have a medical background. I have an understanding how the body works... but I could not get what she was saying. I can keep up... only so far... don't be taxing my brain...

Math? Out the window. Can't do it anymore.


I'm hoping all of this brain stuff clears up with time as well.

The post cancer look is someone who is older and wiser (with gray hair), who has experienced something that only others that have been there knows. I belong to a club now. Membership was accepted and I didn't even have to ask, talk about inclusion. I have trouble walking around, I waddle when I first get up, takes many steps to get in the groove and get the body going. I can't stand for very long. I can't sit for very long. Going into a store of any kind requires a very quick visit, otherwise, I can't maneuver them for very long, and can't wait in a line.

My road ahead is all about trying to get healthy, minimally pre cancer healthy, but would like more. Since I'm 'special ed' right now I want to get physically 'garden strong' so I can tend to that without injury. That's my short term goal, whether my body cooperates or not is another story, but I will work at it. I figure if I can get garden strong then perhaps the brain will follow. 

And, I will work on Radical Recovery.

I'm already working on a treadmill, can't go very far, but I'm doing it! I cannot seem to gain strength/improvement... yet. The test here is the real walk around the block, and I can't make it halfway before pain steps in, and shortness of breath. As I rest and then drag myself around to my house I'm in tears before I hit the front door. 

It. WILL. Come.