Inspired

I woke up today a little inspired. The change started somewhere yesterday evening. I'll get back to this, but first...

On Wednesday I had my six-month oncology check up. Doc thought I looked great, and for the first time in two years my CBC blood work was normal. Still pending results are the Cancer Antigen, and other cancer related blood work. It was a good visit, so I'm pleased.

Meanwhile, back in Ramonaville, I've been in a little bit of a blue-funk lately. My best guess is it's all pain related. I have an inflammatory arthritis that seems to SO want to get the best of me. Head to toe, all muscles and joints, all waking hours- pain. I am daily pulling myself out of depression and crying. There is also a dear friend whose brother is losing his battle with cancer. This amped up feelings I was already having. I love her and feel her pain, I pray for her brother, and do so several times a day now, for his peace when his time comes.  

My friend Abigail has been more of a support to me than I think she probably realizes. She went to many of my chemo treatments when I first started, and we kept in regular contact throughout. I cannot possibly thank her more. We have together, lately, been exploring healthier diets in our advancing age.

Abigail urged me to watch a movie running on Netflix titled Forks Over Knives. It took me awhile, but I finally did, yesterday.

I'm now convinced. This film is a real eye-opener, and, it has the research to back it. Just know there is so much to be said here politically, yes, about food... but this blog would go on forever, and that's not what this is about.

You know that saying "sick and tired of being sick and tired?" Yep. I'm there.

I've been sputtering around for a couple of months now with an anti-inflammatory diet and slowly changing my kitchen around to healthier stock. I say sputtering because I get enthusiastic and go whole hog, then deal with cravings and fall off the wagon, which leave me feeling HORRIBLE! Just how horrible do I have to feel anyway? I can barely make it up and down stairs! I do this in the face of knowing I'm going to feel horrible! WTF?!?!?!?

I will say, and anyone who knows me has heard me say- "I don't eat my judgements." The truth is, I "try to not eat my judgments," and it works maybe 85% of the time... and working less and less...

After watching that film I called Abigail, and I said what I'm so very aware of is a need to educate myself about food and plant-based diets. I want to incorporate that and also, Paleo and Mediterranean diet. If I can, must do a lot reading first.

Side note: By the way, reading is still a challenge, these days I have to take a lot of notes as well because I still have short term memory loss and dysphagia. Yesterday I had a discussion with the pharmacist about slow roasting tomatoes and really struggled in that conversation for words. As I was leaving I wondered if the staff noticed, or she did, or did I pull it off? If I have a really bad time I just tell people, but this time, though it was a bit slow... ah, who knows! Chemo damaged my brain a little, killed my Thyroid, and FYI, I'm on a glucose watch because mine are steadily elevated for almost a year now. It is apparently not unusual to become diabetic following chemotherapy. Oh, no. Na uh.

So here I am, about to embark on a plant-based diet. The film is amazing, and just FULL of recovery stories that will astound! The urge is just do it for 2-weeks. What's to lose? For me, a lot, in the best ways. It's quite possible I may falter again, but if I do, and just so you know, those falters, or relapses will occur further and farther in-between a healthy diet.

Nothing else has worked to me in a long time. All of my diseases are auto-immune. What are the chances they are food related? 

I think pretty damn high.

'Nuff said.

Three Month Check-Up

Yep. That's me. 

I had my check-up this morning. Really, overall, it was pretty good. Had to do the usual blood tests which include cancer markers. She checked me out head to foot, and seriously looked at my arms. Even before, I did have some mild lymphedema, but it seems to have progressed, though, it's still considered mild. I'm being referred to a Lymphedema Clinic for a sleeve and P.T. They actually teach you how to help with drainage.

Here's a tiny lesson: First, lymphedema can occur when the lymphatic system is compromised somehow... like removing it... : )  Anyway, it's an entire, one-way drainage system that is part of your immune system, and fights off infection. The edema, or swelling occurs because of blockage. It's not curable, but it is manageable. And we endeavor to keep it mild... which requires some diligence. For me, my main Sentinel Node, and others were removed from my breast, armpit, and my collarbone and neck nodes were radiated. That last one impacted my Thyroid.







I'm pretty lucky to have squeaked by these almost two years.  Now it's time to deal with some aftermath, and this should be easy... (I'm crossing my fingers)

There is treatment!







Treatment includes-

~Exercises that encourage lymph fluid drainage
~Wrapping (David says "like a compression sock for your arm" Yes!
~Massage
     and if needed...
~Pneumatic compression
~Compression garments
~Complete Decongestive Therapy.


My right ribs cause me a little discomfort from time to time, leaning over, turning a certain way, BAM! catches my breath with a sharp pain. Intermittent aftermath of radiation. Nothing to do about it at this point.

And the fatigue....

If the blood work all looks good I'll see her again in 3 months. 

Hey, I'm alive. I have a growing garden, got a swell fella, good friends... it's all good! 


  

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. 

Finding Words

Happy February!

This morning brings a request for a medical update, that's 2 in 2 days, so here goes-

The Oncology office called a couple of weeks ago to schedule my next appointment and she said, "two more visits and you're done!" I said that's close, but thought there were more. 

Last year I had 6 weeks off (insurance fiasco after starting Herceptin) and then had another 6 weeks off because of the cardiac workup. Somehow, I don't know... call me crazy, but I think someone is counting wrong.

I see the Doc on the 9th for chemo so we'll have a discussion then. I think my biggest point will be: If my cancer comes back in the future I don't want it to be because you didn't get all the doses in me. AND, I don't want that lingering doubt hanging over my head, especially when one of two cancers is crazy aggressive. 




I say this even in the face of questioning the efficacy of chemo altogether. It's the path I chose though, so dammit, give it to me!

As any good woman can, I can spread the guilt thick when I need to... I just don't usually have to, or like to. My doctor is a bit of a space case too, but, I wouldn't trade her for anything. Her forgetfulness is forgiven because she is good, makes you feel like you're her only patient. She gives me all the time I need to talk (and I need this as my organic hard-drive/program has had such a difficult time for the past year, brain-to-mouth), she's rarely rushed, she answers all questions, and takes her time in doing so. She's thorough and to the point, no frills. Just like I like 'em.

I'd say over the past couple of months, maybe more, I've noticed my ability to find words ebbs and flows. This weekend was a little difficult, so difficult, that when talking to David twice, I just gave up and dropped it. My brain searched for the word I wanted... nope... then some elusive secondary word to put in there, but failed, "I give up, I can't put it together." This is a first because always in the past there was a wait, and I would eventually find the words. Not this weekend. One of the times I ended up forgetting anyway. Other days are better. Always existing though is the short-term memory loss. The hope is, that someday, it will all get better. Chemo brain can be either short or long term, we shall see. It's hard when you're talking to someone who doesn't know, and inside you're thinking... please let my brain work, please let me be able to find my words! When I can't I just say sorry... chemo side effect!

My breast sill hurts continuously, with really special moments of sharp stabs. The arm pit hurts too, really sensitive. I have to do a mammogram on my left breast soon, it's overdue. They wanted to do both but I declined. "You can have the left one, but no one is touching the right one." The slightest pressure, like leaning up against a table, or any pressure, OMG, trust me, you don't want to know... Seriously, does she think I'm going to put it between the vise? Oh, na, uh...

Doc finally started me on Gabapentin for the Neuropathy that has not resolved. I'm still in sandals in the middle of winter. I absolutely cannot wear shoes, too painful! This medication has to be eased into though, 5 days night dose only, then a dose added in the morning, we will discuss how it's going on the next visit. I can say that the numbness and tingling in my feet has changed, it's kind of like when your feet wake up after circulation has been cut off, so right now they're sensitive, but boy, I can sure feel the difference. The 4th and 5th fingers on both hands are still numbey and tingley (<- made up words) but I can type a little bit easier.  : )  We'll see what she says about this. I should read up on this medication more.

Speaking of which, I don't know when it happened, but somewhere along the treatment line I felt kind of like Rocky... "cut me," Meaning, just do what needs to be done. I mean, I pay a little attention to treatment, and I'm not sure if it was an 'energy' factor, I don't know, I just know I've only half assed payed attention to some things. 

 

Good? Bad? Who knows. 

I'm probably only going to do one more blog after this. Wrap up the treatment blog, you know? Not sure, we'll see.

Peace.

                                 It's all illusory anyway, right?