MSKCC – Stickit2Stage4

The last few months have been busy. Lots of traveling in-between medical appointments and tests.

All the gallbladder testing and imaging did not turn out as expected, which in this case, is good news. There are no plans to remove it. It appears to be working just fine. Unfortunately, not much else has changed, so my GI doc (Dr. D) has put plan B into place. I’ll get into that in a bit.

Last month, I spent a few days in N. Carolina to take part in an advocacy project for METAvivor called The Serenity Project. It has two parts – an interview and an artistic part. The ‘artistic’ involved being in and underwater which was challenging. I sure no one wanted me to drown, but there were some times I was wondering….I’m JOKING. The entire project includes 10 Metastatic patients in all and will be debuted in December at the largest breast cancer conferences of the year, The San Antonio Breast Cancer Symposium (SABCS).

Interviewed by METAvivor President, Beth Fairchild

In addition to the “work” of the project, there were some fun things that had been planned, like yoga on horseback – yes, I did yoga on a horse. I also learned how to groom a horse too! Having never been on a horse before or even around them, I was excited to do this. Of course, the horse I ended up with was ‘hangry’ and wanted to do nothing but graze. She finally calmed down after she ate a bit of grass.

Shortly after coming home, I was back on the road to NYC. It was time for my 6 month PET/CT scan and check-up with my Oncologist. More good news, scan still showed no new evidence of disease.

Once my appointment wrapped up, hubs and I were back on the road to take a much-needed break in Florida. There is nothing better than morning walks on the beach, feeling the sand in your toes and finding shells along the way. If there is something better, I don’t want to know about it.

Now, for the ‘other’ or that Plan B I mentioned earlier.

The main issues are that I can’t stop losing weight and I have significant pain every time I eat. I must have another ultrasound of my abdomen and an upper GI with barium (yum). Dr. D also put me back on Omeprazole to make sure it’s not GERD, something my Oncologist at Sloan brought up mainly because I’ve had that issue before.

If all of that is negative, exploratory surgery is next. In anticipation of that happening, I have a consultation with a surgeon. If it were up to me, I would skip the tests, jump right to surgery and get to the bottom of this crap.

Then he hit me with this….sigh…I have about 10lbs wiggle room but that’s about it. If I continue to lose weight and get to or below that 10lbs, we will have to have conversations about a feeding tube or a PICC line for nutrition. (Link included to explain what all that is). That’s a hard pass. Nope. No thanks.

So that’s what’s happening and where things stand.

As for where my travels are taking me next, I’ll just leave this here…..

The last month has been very frustrating.

It started out with me doing something to my side/rib area while making my bed. I felt a ‘snap’ and it immediately brought me to my knees. I honestly didn’t know if it was a pulled muscle or worse. I had plans to have lunch with my Mom and after she insisted I go to Immediate Care and get checked out. I was having a difficult time breathing. Long story short the verdict was I fractured the rib I had previously radiated. I was a disc. This was on a Thursday.

I managed to get thru the weekend with some breakthrough morphine. Tuesday morning something changed. I woke up in even more pain and was unable to take a full breath. Around 3am Wednesday morning I woke up feeling as if I couldn’t breathe. I was scared. I finally woke up my husband and he took me to the ER. One thing about having Stage IV cancer is that you get taken right in when you go to the ER. I told the intake nurse I had fractured my rib and now I couldn’t breathe and was in horrible pain. My BP was 159/105. I had an EKG, more X-Rays and a CT w/contrast. The CT was horrible. I was sure I would pass out before it was over. I could NOT breathe. When I finally got back to my triage room, still fighting to breathe, I pushed my call button for help. The nurses couldn’t care less. There was no sense of urgency, they spoke to me in a condescending tone and asked me what I wanted them to do. Um, gee, maybe HELP ME?!? Finally, the Dr came in and said the tests showed no clot in my lungs and I was fine. FINE?!? I was NOT FINE. What was going on? I was truly confused.

Thursday I had a regularly scheduled appointment with my GP. I went thru my whole story about the rib and the ER. She goes thru my tests, looks at the images and then says “Who told you fractured your rib?” I told her Immediate Care and I gave her the disc. She said…”Well, according to what you had done at the ER, there’s no fracture “. Then it hit me: the reason I was treated the way I was is because they thought I wanted drugs. I was pissed. I even told them I didn’t want narcotics because that wouldn’t fix the problem! The good news was my cholesterol went down 16 points.

Still living with the pain, I begin to feel a rattling in my right lung. I have no fever, no cough. The following Tuesday I see my Palliative Care doctor. Again, I tell her what’s been going on with my not really broken rib and horrible pain. She takes a listen to my chest and tells me I definitely have fluid building. She tries contacting my Oncologist. I told her it wasn’t a big deal, I was seeing her in 2 days.

Thursday, I see my local Oncologist and get my Xgeva injection. My local Oncologist tells me she believes I DID fracture my rib. Now I’m really confused. She examines me and checks my oxygen saturation a few ways. Laying down, sitting up and walking around the office. Laying down and walking around causes my levels to drop below 90. She makes a few calls and get a me scheduled for an MRI of my chest wall for later that day. She also suggests that I cancel my trip to Memorial Sloan Kettering. She doesn’t feel I should be traveling. When your Oncologist tells you not to travel, your brain begins to think about all the ‘worst case scenarios’. Chest wall mets, lung mets….cancer progressing.

I knew this would happen eventually. Just because I’m NED doesn’t mean the cancer is gone. Its still there. Its just too small to be detected. I was just hoping it wouldn’t happen until after my son graduates from High School.

The MRI was 60 minutes. There was no way I could have gotten thru it without Xanax. God bless Xanax.

With the MRI done we decided to make the trip to Kettering anyway. I wanted to update my Dr and I had a bunch of films to bring her too. For the 4th time I tell my rib/ER/lung fluid story. Basically, my Dr tells me there are only 2 scenarios. Fractured rib is the problem and pain is causing shallow breathing that’s causing fluid OR Cancer progression and we tweak my treatment. She discusses how there are still hormone treatments to try and other meds to add to what I’m currently talking. We dont necessarily need to jump to infusion chemo. That alone makes me feel much better. So, the plan is if it is cancer I come back in a week for a biopsy and get a new treatment plan.

At 5pm my phone rings. Its my local Oncologist from home. No new lesions, no progression, small pleural effusion on right side. Did I hear that right? No cancer?? No cancer.

I was so sure. I was positive. Seems like so many of my friends have been getting bad news or have died in recent weeks it just made sense to me that it was my turn. How is it not? I was numb. I should be happy. I should be jumping up and down but I just sat on my hotel bed and tried to process it. Its difficult for me to trust these tests. I’ve had so many that were read wrong when there was a problem, not to mention the rib – broken, not broken. How do I know this test is really right? My biggest fear is that the cancer is progressing but everyone is missing it. The same way I had a mammogram and my cancer was missed. The same way I had a lumbar/thoracic MRI and my spinal lesion was missed. My fear isn’t irrational. Its happened before.

I guess I just have to wait and see if the fluid keeps collecting. Wait and see if the pain eventually subsides. Until then I’ll just keep going on and try not to think about it.