Rise Up

Cover of Rise Up by Andra Day Mother and son duo; Jordan Rabjohn and Katherine Hallam 

I do not own the rights to this inspirational saying

I do not own the rights to this music. If you haven't heard this version, my only question is "what rock have you been living under"?  I LOVE this version of this song! Such an inspirational song, one I listen to when I need a little push to keep going.

The title of this post is more a nod to the song and it is somewhat related to what I want to convey, but not as evident as in other titles I've selected to provide a hint of what's to come. Ready? 

Everything you wanted to know about breast cancer but are afraid to ask

1. There are many different types of breast cancer and they can present themselves in a variety of ways
• Lump
• A thickening of the breast
• A "sheet"
• Dimpling
• Discoloration
• Rule of thumb, if there is a difference, get it checked out, even if you just had a mammogram
2. Men can also get breast cancer, so check the pecs guys!
3. Be your own advocate or find someone who can be an advocate on your behalf
4. Find a support group
• Breastcancer.org is a great place for information and support from others going through the same thing
• The American cancer society is another great resource
• Many cities have local support groups that can help
5. Breast cancer contained in the breast typically doesn't hurt
• Once the cancer spreads to other organs it can be a different story
6. There is no cure
• This is a statement my oncologist told me from day one
• 5 years later, with no recurrence, I was deemed "cured"
• When I questioned that statement, my doctor modified that to remission
• Although there is technically no cure, many women enter remission and never experience a recurrence, hence "cured"
7. Not everyone loses their hair when they go through chemo
• I was told I would start losing my hair at about the 4 week mark, so I took matters into my own hands and shaved my head; I ruined a cuter than cute hair style to have some semblance of control over my cancer
• I had one chemo that caused my hair to thin (it looked like "snow failing" when I dried my hair); but I have yet to reach baldness because of chemo
• My advice? Wait until your hair really starts falling out, then head to the barber
• Bald can be beautiful, especially accented by a cute bow
8. Not everyone knows that metastatic breast cancer means this disease will eventually kill me
• Someone told me once "well, at least your cancer is not terminal" 
• Tell that my cancer
9. Maintaining weight is important
• Almost all chemo treatments have side effects which can cause weight loss (such as severe nausea, diarrhea)
• Weight loss will impact your strength, your stamina; both are needed to battle cancer
• Many advances have been made where these side effects can be controlled by medication
10. Keep moving
• It is important that you do some form of exercise everyday. This goes hand in hand with weight loss and maintaining strength and stamina
• Short walks are okay
• I've done chair exercises on days when I didn't have the strength or stamina to do more
• Any type of movement counts
• Consider dancing!
11. Chemo poop stinks
• Trust me on this one
12.  Chemo is not always an infusion
• Most chemos are given via an infusion
• Some chemo comes in pill form; in fact, some of the most powerful drugs are in pill form
• My current treatment is available in both; I am taking the pills
13. Metastatic treatment is not a sprint, it's a marathon
• I will be in treatment at some form for the rest of my life
14. Cancer is not an automatic death sentence
• Although my cancer may eventually kill me, I am doing everything I can to stick around as long as I can.
• Medical advances are happening all the time
15. Miracles DO happen
• I have experienced at least one "in your face" miracle and then another but more subtle
16. Hope is a must
• Once you lose hope, you've lost the war
17. Attitude matters

There are more, but I think these are the high points. 

Stay tuned. I am checking out recent medical breakthroughs that I hope pan out in clinical trials. 

Need someone to talk to? I'm here! Shoot me an email RavVicki@gmail.com.

Sunshine on my Shoulders

  Sunshine on my Shoulders by John Denver  I don't own the rights to this music or this picture

Last time I posted, it was during my chemo off week and I felt GREAT! A lot has gone on these past couple of weeks. First, my tumor markers remain out of control and are still on the rise, just not as much. Second, my PET was canceled. Third, I have no appointments scheduled with my oncologists office and I am waiting to hear back. Finally, I think we found the sweet spot on the chemo dose! Yahoo!!

As I said, tumor markers remain on the rise, but that is to be expected, especially starting a new treatment. It can take a couple of cycles. I am not concerned. But ... there is always a "but" ... if they continue to rise, we could be looking at treatment number 8. I am not ready to give up on number 7 just yet!

As for the PET getting canceled, it is because they did not get approvals on time. I see it as a blessing in disguise. A PET at this point in the cycle is really pointless. Why spend $100 co-pay knowing the results won't mean much because we were just one cycle in. I am waiting to hear back on the new date. I suspect during my off week after cycle 3, which will be mid-October.

Because the PET was canceled, there is no point in meeting with Dr. Kocs. We only meet for the "BIG" appointments, which is typically to go over PET results or some other test that could indicate my cancer is or is not getting better. There were also short a PA or two, so since I am feeling fine ... good actually ... they decided to just have me come in, draw the labs, and do my monthly Zometa infusion (bone meds). This is to help avoid fractures since I have several lesions on my bones. And since I didn't meet with a PA or Dr. Kocs, there are no orders on file for future appointments. I have a call into their office. Still haven't heard back, so another call is in order.

During my last visit with Rachel (almost two weeks ago), we discussed a plan to determine at what point and at what dosage does the dizziness kick in. We started off the beginning of cycle 2 with 2/2, then on Monday, we upped it to 3/2. This past Friday, we upped it to 3/3. By Sunday morning, I started to feel dizzy. Not much, but noticeable. I took a vertigo pill and all was good in 2 hours or less. Rinse and repeat Monday. I am still on 3/3 but as of this writing, I have not been dizzy today at all. Let's see what happens tomorrow. Regardless, I think we've found the sweet spot! I am not brave enough ... yet ... to go back to 4/4, as 4/4 put me on the floor! 

My only concern now is that my legs feel like lead when I try to walk with Dad and Sam. I can make it to the mailbox and home (1/2 mile) but I can't walk the 1.4 miles we walk every morning. This didn't start until I went to 3/3. I am curious if it stops on my off week ... I suspect it will. My off week starts Friday night, so we'll see.

I have read that many women stay on this medicine for 3+ years and are doing well. I want to be in that group! They have bone and liver mets like me, so I am hopeful I can also take this medicine for a long time. For the first time in forever, I am thinking I may be able to plan more than 6 months ahead. It's a great feeling!!

There is more good news! I was asked by my sister to speak to her office about my breast cancer journey during their Breast Cancer awareness campaign. I am very honored to be asked to share my story. This happens in mid-October. I'll let you know how it goes. I hope I do my family proud!

Winner Winner Chicken Dinner!

Chicken Dance Song I do not own the rights to this music or the picture below.

In my last post I was talking about my struggle with dizziness. Is it over? I won't say that. But I will say that on this labor day holiday I am dizzy free! Whoop!

I was still dizzy on and off through yesterday. I took one of the "vertigo" pills the doctor prescribed as a shot in the dark. I'm not a fan. Did it help with the dizziness? Yes, but I felt like I was in a fog that carried over to today. But... the fog is not dizziness. I can operate in a fog (it's that post sleeping pill feeling, if you've ever taken a sleeping pill before). Some will say I stay in a fog, hehe!

I've had more energy and appetite than I've had in two weeks. I've done dishes, folded laundry, DROVE TO THE STORE!! I even made cookies. Shut the front door! This gal is out of control! I can see those of you reading this going, "Oh, Pulease! I do these things every day!". You have a point ... except I haven't been able to do these things because the dizziness was so bad. 

Before you freak out, I had to pass a test before I was "allowed" to drive. Hubby made me walk up and down our very long hallway without touching walls for balance. I passed. Plus, he thought I was just driving to the little store by the house ... which was my intent. Like many women, I changed my mind and drove all the way to WALMART! What a renegade! I called hubby when I got to Walmart to tell him where I was. I knew it would take me longer to get the few things I wanted and get home than had I gone to the little store. I didn't want him to worry. When I got back, I was so excited about my accomplishment! I felt I had won a marathon. I felt like Rocky!

Although I've hated these past two weeks, I am so happy and so blessed! I will no longer complain about having to do mundane chores. Well, I might for a hot second. And then I will remember what these past two weeks have been like. How miserable I was, how my independence was stripped away. I felt so helpless. It's a horrible feeling.

What's next? I'm not sure. I know I want to try walking with Mike and Sam in the morning. We're playing it by ear. I will definitely be sending a note to my doctor about a dizzy-free day and hopes that it continues during my chemo off week. If it does, I know I can handle this chemo when it starts up again using the little virtigo pill once a day to stave off the dizziness and other strategies to minimize the impact. If it still means no driving during the chemo weeks, I can live with that. 

Right now, I feel like a winner!!

Stormy

Stormy by Classics IV  I do not own the rights to this music or the picture below.

Wow! The past few weeks can only be described as stormy, hence the title of this post and the picture. I'm not even sure where to start! 

Let's start with tumor markers. These suckers are out of control, so much so that we stopped Doxil earlier than we wanted to and moved to Xeloda. For reference, my tumor markers on 8/6 and 8/20 are as follows: CA 27 - 29 692.5 and 834.1 (normal high is 38.6); CA 15-3 322.1 and 410.8 (normal high is 32.4); and CEA 4.7 and 4.5 (normal high is 2.4).Crazy!! I asked Dr. Kocs after the 8/6 results "so what do we do now? Change? Wait?". We changed. Four pills in the morning, and then again 12 hours later. I must take them no later than 30 minutes after eating something. 

For the first time in two years, the chemo queen may have met her match! I've lost my lunch 4 times in 14 days (still not bad compared to most, but new for me). The worst thing that has me on the floor is dizziness.

I started the chemo on 8/20; the following Monday I had to beg off on our morning walk with Sam about 1/2 way in. It took everything I had to put one foot in front of the other to get home. I had to sit down 3 -times before I got home, I was so dizzy. I was dizzy on and off all day Monday. I felt better Tuesday AM so off I go with hubby and Sam. Big mistake! I got around our loop and had to beg off again and head home. I had to sit down again about four houses down from mine, I was so dizzy. I haven't walked with hubby and Sam since. I've been dizzy every since, sometimes more so than others, but it is constant. I am now officially a fall risk (don't freak out, Cathy! I am being super careful!).

I moved my doctor appointment up, thinking my electrolytes were being impacted by the new chemo. Blood work was stellar. That's not it. The PA I saw on Thursday told me to lower my dose to 4 and 3. If that didn't help, I could lower it again to 3 and 3. By Saturday, I had lowered it to 3 and 3. 

I was silly enough to drive to my doctor's appointment on Thursday afternoon and then again to follow-up MRI appointment. Luckily those were both late in the afternoon where I wasn't AS dizzy and I thought I was invincible. I learned on Friday that my reflexes were a step off. That was the end of my driving for awhile. I only got behind the wheel long enough to move my car from one side of the driveway to the other to make it easier ... and closer ... for me to get in hubby's car. He is now my chauffer.

Last week was a huge challenge trying to work with the dizzy. Focusing can be difficult; writing emails takes longer than it should because I'm having to review and edit more than usual. It has taken me 90 minutes and counting to write this post. Sometimes my speech is impacted, struggling to focus enough to get the words together. It was evident to others that something was amiss. Other times you couldn't tell I am operating in a fog. It's been frustrating.

I met with Rachel on Friday. Blood work is still holding strong. Rachel isn't convinced the new chemo is causing the dizziness, as only 6% of patients experience dizziness on this medicine. She had the nurse do an EKG. She also ordered a CT on my neck and chest ... remember some of my lymph nodes are near other structures and could be causing issues. She also ordered an Echo Cardiogram. Waiting on the insurance to approve the tests so they can schedule. I suspect a visit to a cardiologist may be in my future. Doxil can impact the heart long after you quit taking it. There may even be a visit to an ENT. 

The name of the game is to stabilize my weight and I've managed to do that. I try to eat every two hours, even when I am not hungry. Vegetarian is off the table for now as I need to maintain and not lose weight. It's a strange existence. I HATE being dependent on others, but I thank God that Mike is always here for me, sometimes scolding me for trying to do too much. It took me 3 days to fold laundry. Mike would do it for me but I insisted I could do it myself. Silly, right?

Anyway, my focus these days is to how to work through the dizziness, see what works and what doesn't. Rachel prescribed me Vertigo meds, although I don't have vertigo. I haven't tried it yet. One of the side effects is ... wait for it ... dizziness. How stupid is that!! 

I am not giving up! I don't want to give up on this treatment because I think it's working. My PET on the 14th should let me know if I'm right or not. Meanwhile, Onward through the Fog!  Isn't that from a sign from an old head shop somewhere? Anyway, it fits!!

MRI results are great! Right lobe lesion down 40%. Lower left lobe is barely 1 millimeter. I mention it because we were concerned that they were causing the dizziness. Yay that its not!!

I don not own the rights to this picture.

Get Happy!

 Get Happy - Sam Smith and Renée Zellweger I don't own the rights to the music or the picture

I started reading some posts on Breastcancer.org today, in particular one I had commented on. There are stories upon stories of women who are angry and who would blame them. Cancer can turn your life upside down .... if you let it. Sadly, many are taking that route.

What disturbed me the most were those that encouraged the anger throughout the cancer fight. Almost praising those that hang onto the anger. In fact, there is a thread where women can continue to vent. It isn't a thread I will visit. For those that read my blog on a regular basis, you intuitively know why.

While I agree that everyone has a right to be angry and mad and sad and a whole host of emotions, I don't agree with staying in that space. Think about it. How do you feel and how does your body feel when you are angry? For me, I feel horrible! Why stay in that space? What purpose does it serve? All it does is throw more negativity into the universe. The last thing I need is that negative energy coming back to me .... and it will.

I had some news last week that rocked my world for a bit. My tumor markers that WERE on their way down decided to change course. They are now higher than ever ... the CA 27-29 numbers now exceed 600 (for context, high normal is 38). I won't say I was angry, but I was very very disappointed .... and sad. It took me a couple of days and digging real deep to find my happy place again. But I DID FIND IT!

Everyday we wake up and have a choice. We can choose happy or we can choose the opposite. Sometimes it takes work to find the happy place. But I assure you, it is ALWAYS worth the effort to choose happy! 

Everyone's happy place is different. My go to happy place is a hot bath. But it isn't my only happy place. The tub is where I go when I feel my cancer is misbehaving. I also have several other go-to things that make me happy:

• Listening and dancing to catchy music 
• Watching the hummingbird and the monarch butterfly feasting on the flowers in the front bed
• Watching storms roll in 
• Thunderstorms
• Jigsaw puzzles (only those with big pieces ... I'm old and can't see squat)
• Walking and loving on Sam
• Talking to my grandchildren 
• Stealing a few minutes throughout the day just to say "Hi" to my hubby or give him a hug
• Beautiful landscapes feed my soul
• The beach
• Taking great pictures

There are more, way too many to post here. My point is there is so much in your life that can make you happy. You just have to choose happy over the alternative. I never said it was easy .... but it is definitely worth it. 

I hope all of you find and cherish your "Happy"!

Help Me Faith

Help Me Faith by the Hope County Choir - I do not own the rights to this music

Faith & Hope 

I find this title and artist to be quite appropriate for the message I want to portray ... Faith and Hope! I have been on this metastatic breast cancer journey for almost two years now. Sadly, we've had more downs than ups. Because of my faith and hope, I keep pushing through; we keep pushing through. I say "we" because this disease impacts my entire family: my husband, my children, my grandchildren, my siblings, my nieces and nephews. My "breast cancer" family - you know who you are. Everyone! 

For the first time in almost a year, we received decent PET results. In the last 5 scans, we knew instantly that a change in treatment was a must. It wasn't so clear with this one. Just the opposite. We still saw some slight progression and a new bone lesion. But we also saw decreased metabolic activity in lymph nodes, no or minimal change in other lesions, and resolution of an area that caused me pain two months ago (of course, I figured this one out on my own as a week after chemo, I had no more pain). I had Faith and Hope that the new chemo killed or at least injured the lymph nodes causing the pain; the new PET results confirmed my suspicions. 

We also got news that tumor markers are on their way down. The last time I mentioned tumor markers in my blog, the CA27-29 levels were over 200; high normal is 38. They doubled in size to over 450. I am happy to report that this number is now at 417. Doesn't seem like an impressive drop, but the levels are finally going down and not up. We will continue to check tumor markers every two weeks to help us gauge how we're doing.

As happy as we are with the results, I have to admit that I haven't been completely forthcoming with just how much my cancer has invaded my body. I have shielded the nitty gritty details from everyone except my immediate family. I guess mainly because I wasn't sure how y'all would handle the reality; it can be a bit overwhelming. The last thing I want or need is for you to pull away because you aren't sure what to do or say. And I certainly do not want pity or sympathy. Let me help you .... just send prayers of hope and keep the faith that I am doing everything possible to live my best life everyday. I plan on being around awhile 😄

Time to come clean. Here are the details in the PET that speak about the areas impacted by my cancer:

Lungs: There has been interval resolution of partial lung collapse seen in the left lung base on the prior exam. No opacities on the current exam. No abnormal radiotracer uptake.Pleura: Interval resolution of pleural effusion seen on the prior exam.

Note: this shows up in every other PET. The chemo kicks it back every time. Hopefully, it will stay gone for a while this time.

Liver: There are a few low-density masses with radiotracer uptake in the liver. Mixed interval change since the prior exam. One lesion is stable. Others show slight increase. Overall appearance suggests progression. Reference lesions: * Segment II mass [4, 82]: 1.9 x 2.3 cm, prior 2.0 x 2.3 cm; SUV max 21.2, prior 16.7. Increased. * Segment IV/V mass [4, 89]: 2.2 x 2.4 cm, prior 2.2 x 2.3 cm; SUV max 14.8, prior 14.0. No change.

Note: I actually have three lesions in my liver. So two show slight increase, while one shows no change; that's a win in my book!

Lymph Nodes: Multiple lymph nodes with radiotracer uptake are seen in the neck, chest, abdomen, and pelvis. This includes jugular and superficial lymph nodes in the left neck. It includes left supraclavicular, bilateral axillary, bilateral subpectoral, pericarinal, bilateral lung hilar, and pericardial distributions in the chest. It includes celiac, portal, portacaval, aortocaval, and para-aortic distributions in the abdomen. It includes bilateral common iliac distributions in the pelvis.

Compared to the prior PET/CT scan, size and activity are either stable, or have decreased moderately. This suggests partial treatment response.

Note: The only one I can feel is the supraclavicular in my neck. The PA and I check this guy regularly to help gauge how the chemo is doing.

Bones and Soft Tissues: Multiple foci of increased uptake are seen in the skeleton. These are seen in cervical thoracic and lumbar spine, left scapula, multiple bilateral ribs, sacrum, left posterior acetabulum, left ischium, and bilateral femurs. The larger foci have associated lucency on CT. These are consistent with osseous metastases. There has been mixed interval change compared to the prior exam. A few lesions have improved. More have increased. There are a new lesion (left mid iliac bone). Overall appearance suggests progression. 

Note: I am getting an infusion of Zometa with my chemo to help the bones stay strong and avoid fracture. Hoping more will show decreased activity next PET.

Summary:

1. Partial treatment response in lymph node metastases.

2. Mixed interval change in hepatic metastases. Overall appearance suggests slight progression.

3. Mixed interval change in osseous metastases. Overall appearance indicates progression.

4. Improvement in left-sided hydronephrosis. My kidney pain from last PET

5. Resolution of left-sided pleural effusion and resolution of partial left lower lobe lung collapse.

Brain: I have two lesions in my brain; one right front lobe and one back left lobe. We radiated them a few months ago and my follow-up MRI showed a 20%  decrease. I should have another MRI in August to check on progress. 

A bit overwhelming when you see it altogether, right? Especially the lymph nodes ... they're everywhere!! Anyway, this is my life. And I'm okay.

Through it all, I continue to have faith and hope that things will get better. My message to all it to never give up, never quit fighting. Continue to have faith and hope; without faith and hope, you have nothing. Find the rainbows in the storm ... they are there if you look.

One final note. The chemo queen still reigns. No side effects on Doxil. I'm not sure if it is because of the advancements in the chemo or my body just handles toxins well. Regardless, I know many who suffer horribly from nausea, neuropathy, peeling hands and feet, mouth sores, etc. I've managed to dodge all those bullets so far. I count my blessings every day that I remain free of side effects.

Changes

Changes by David Bowie I do not own the rights to this music

Yep, changes are coming! First, a little background. The PET was horrible (previous post), add out of control tumor markers (CA 27-29 was 252, high normal is 38), constant pain in my left side (see PET and the piece where it talks about my kidney on the left side). Yeah, it's been fun. I started Doxil on 5/28. My husband insisted I be a couch potato through Memorial Day. I took him up on it. Between hubby and my son, they kept up with dishes and laundry, then fed me to boot. I binge watched the Great British Baking Competition. A good time was had by all. 

Mike and I met with Dr. Kocs on Friday. He confirmed the pain is cancer related, a first for me in this journey so far. I should count my blessings that I haven't experienced this sooner. The good news? What?! There's good news in here? Yes, Virginia, there is a Santa Claus! The pain over the weekend was pretty bad; it hurt to walk (not cry hurt, but it caused me to wince .... a lot). Fast forward one week and the pain is much better. It still hurts, it's still constant, but getting less every day. As of this writing, it is more of an annoyance than anything else. Is the new chemo working already? I need hope, so I choose to believe it is!

What else did the good Dr. have to say? Well, hubby and I had an ongoing "discussion" about me taking it easy vs full steam ahead. Hubby wants me to slow down; I'm afraid if I stop moving, I won't be able to move at all. Turns out, we're both right. My stamina has taken a huge hit with all the rain and the pain in my side keeping me from walking the dog every day. I hate to admit that. I am slow and I struggle to keep up with hubby and Sam. It doesn't take long. Dr. Kocs agrees I need to work to keep my core strong, my stamina up; keep moving and do the things I enjoy .... in moderation. He also agreed that I need to take it easy. No more do dishes, start laundry, vacuum, cook, rinse and repeat, without frequent breaks in between activities. I need to learn my new normal. Do whatever for 20 minutes, rest for 30 or so before I am on to the next thing. If I don't I will pay the price. 

I played with my granddaughter this weekend, first time in over a year. Three hours later she was heading home and I was taking a nap .... for 3 hours. She wore my butt out. We had fun, though. She is too cute!

Dr. Kocs also told us I should be around in December (my retirement eligibility), but obviously, so much can go wrong so fast, there are no guarantees. We still have a lot of tools in the shed - conventional chemos, genetic therapy, immunotherapy ... and clinical trials. This is the first time he has mentioned clinical trials. I'm told there are several in the area, so I'm there when the time comes.

More good news! I was preparing to schedule my annual Reclast infusion for my osteoporosis. Instead, Dr. Kocs is adding Zometa to my treatment to strengthen my bones. This is because of the bone mets found on the last pet and the new ones on this one. We need to guard against fracture. So ... when I get my Doxil every month, I also get Zometa, so much more that my annual Reclast infusion. Three cheers for strong bones!!  My first infusion will be on 6/25. Can't wait!  This new protocol takes at least 3 hours:

• Steroids - 30 minutes 
• Doxil - 90 minutes
• Zometa - 15 minutes
• Labs and PA visit - 15 minutes
• Waiting on meds - 30 minutes

More good news? Yes! That's at least 2 hours of dance time!! Providing I have the stamina ... last time I danced, I needed to rest a bit. We'll see. I certainly have the play list to handle two hours!

Wish me luck on increased stamina!!

New tumor market test on 6/25. Next PET in July. Fingers crossed for good results. We need good news!!!  This is me!! Dance Monkey by Tones and I I do not own the rights to this music or this picture.