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.