The Other "C" Word- an update

This was me on Monday.

Sh*t. No that doesn't make me feel better.

F*ck. That one isn't releasing the anger I feel inside either.

Is there a curse word anywhere that can express how I feel?

NO, NO, NO!!

Monday, I saw my scan. One mutinous 13 millimeter spot in the middle lobe of my right lung glowered at me. It gave proof to everyone in the room that my cancer was growing, no longer responding to TDM-1. 

The image is not mine, but you get the idea.

But . . .

I had done my research.

"Could radiation be targeted at that one spot to push it back giving me more time on my current treatment since it is working everywhere else in my body?" I asked.

I knew the options left for me were far from being side-effect free. If I could avoid them, that is what I wanted.

My oncologist opened her eyes wider. "Stereotactic Radiotherapy. Yes, a possibility."

Hope was in the air.

This was me on Wednesday.

Walking out of the cancer hospital, the plastic bag I carried ripped exposing all I carried in it. My water bottle, soda, and sweater scattered on the concrete walkway. I picked it up and moved away toward the building's side in order to reorganize my belongings. As I knelt placing each item in a different bag my body shook, my hands reached upward and cupped my eyes. Exploding through my brain were thoughts of the words I had heard no longer than 10 minutes before. 

"I think there is a potential for a CURE."

WHAT?

I knew the statistics. I knew what I had been told and read about concerning people like me with stage IV breast cancer.

I said to the radiation oncologist, "Please don't say that to me".

He said, "I am not bull-shitting you. (Really--his real words!) I am positive and also a realist. I think this is possible. You have responded so well to treatment and are showing only one tumor. I say we essentially cut it out with radiation without actually cutting and continue treating you with TDM-1."

That is the plan I was hoping for.  (And, he said my oncologist was brilliant. I guess he didn't know the idea was mine.)

This guy was everything I could ever ask for in a doctor--energetic, positive, wanting to treat aggressively, willing to take chances when the opportunity to make a profound difference in someone's life presents itself. The description of a doctor's role to "comfort always, treat often, and cure sometimes" was being applied to me in every way.

I stood up, glanced around to find two women staring at me, checking to see if I needed help. Catching their eyes, I smiled and uttered, "I'm all right." I suspected they knew what I might be feeling, after all they were sitting outside a cancer hospital.

I found my car, unlocked it and sat in the driver's seat. My neurons were firing off through to the end of my fingers. I had to message my family. I wanted to tell the world what had happened. Someone is trying to save me.

While I waited for my heart to slow down and my senses to bring me back to reality, I confirmed to myself--I am a realist. Despite what he said, I knew this could all fall to pieces. But at this moment I want to believe what he said is true. For now, I am holding onto his words. The words I have been longing for.

The other "C" word, "cure", is the most beautiful word in the English language even if it only means living long enough to die of something else besides cancer.

Details to come. 

Expectations and Low Platelets

Maybe my expectations about what I think a nurse navigator's job is, of how I think my oncologist should respond to my needs as her patient, or of what my former oncologist should do concerning me are simply too high. Maybe my disappointments with them should be explained away by saying "they are only human". I don't mind forgiving them for an occasional seemingly obvious lack of concern for my needs, but how many should be allowed?

CAT scan machine - from Bing images

On June 3rd at 9:00 am, I had the unpleasant experience of listening to that big white machine tell me to "breathe in" and then "breathe". Yup, I had another CAT scan. There was no pain involved except the needle prick through a vein accessed to enable fluid to be sent inside my body to highlight any areas of possible concern. The process went quickly, like the last time, and away I went to wait for the results.
I know there are several steps and people to pass by before the results ever reach the desk of my oncologist. Sometimes this occurs quickly; other times it does not. I also know my oncologist as well as others involved in my treatment have other patients to care for besides me, so I am never one to demand that I be taken care of first. I do have my limits, though, about how long I should wait.

June 3rd turned into June 4th and eventually I found myself on Friday at 4:30, June 5th, with no information about my scan. Monday, June 8th, was my next treatment appointment. If something was seen on my scan that would indicate a treatment change then there was no reason for me to travel two hours to find that out. I would be sent home only to return at a later date because insurance approval for the next treatment chosen does not have a fast turn-around time.

I made it clear fairly early in my treatment that I wanted to be notified of all scan results before my next scheduled appointment. What could possibly be the problem?

At 4:30 on Friday, I was anxious. I sent a message using the new message system at my treatment center-- nothing. As the clock ticked to 5:00, I decided to text my nurse. Not too many minutes later I received this:

Waiting for doctor to report. Soft tissue of neck and abdomen appear normal. There is one nodule in lobe of rt lung that was 3mm increased to 7mm.
There were several texts back and forth between us. I was trying to process all this information while in the grocery store with 3 of my children. It is hard to see labels with tears in your eyes.

The nurse didn't think there would be a treatment change, but ultimately that decision was up to my oncologist. I was not to cancel my Monday's appointment.

At least she responded to my text. But why did I have to initiate the conversation?

At home, I reread every scan report I have had over these two years. I convinced myself that this one nodule suddenly being seen after several clear scans may in fact be scarring after a childhood infection or perhaps inflammation left over from that illness. I knew I had at least one of these nodules, so perhaps that is all it was. This perked me up a bit. Life continued.

Monday arrived and after waiting for my name to be called, my husband and I were seated in a room I have been in numerous times. Not too long after we made ourselves comfortable, a knock came and in walked my oncologist. Greetings were exchanged. She walked to the sink and washed her hands as is always the procedure. While she dried her hands with a paper towel, she began.

"There is a nodule that may or may not have grown 4mm. I compared this nodule to a scan you had in April 2013. Then, it measured 6mm. I don't think this is concerning."

She explained again to me the nature of a CAT scan; A 2mm picture is taken, and then a 2mm picture is not taken. The machine continues dissecting in this way until there is no more tissue to scan. Since there are some missing parts, the parts are put back together to make an image that a radiologist can read. Because of this, there is some guess work done on the part of the person viewing the scan. This means what appears to have grown 4mm may or may not have grown at all or was always that size but not seen before.

She alerted me she would have the in-house radiologist look at the scan to get their opinion of the nodule. The radiologist that produced this report was located in the same facility I had my scan. That one is close to my home. My doctor wasn’t concerned about the nodule and believed it most likely was not cancer but one of those harmless nodules.

Waahhhooooo!! I can relax . . . for now.

With that out of the way, she confirmed my platelets were still low. Three weeks ago my platelets were at 77 or rather 77,000. My current treatment drug was reduced by 20% so I could be treated. On this day my platelets were 82,000. An improvement but not significant enough to be receive treatment. My doctor wants to see my platelets at 100,000 so I can have my drug given at full-dose. The plan was for me to have my blood count done in a week (locally) and if the platelets reached that magic number of 100, I would have my next treatment the following week.

Before our conversation closed, I asked about being notified about my scans. Why she asked if I wanted to be informed of any bad news before an appointment baffled me. She did just have a baby in January, so since I didn’t see her a lot during those last few months of her pregnancy, I will give her the benefit of the doubt that she somehow forgot. Did she? I doubt it. Two years of trying to build a relationship with her seems to have failed.

First she explained the nurse did not like to give bad news— that had already been established before and at this point I thought “I don’t care.” Since the nurse had not heard from her and did not want to interpret my scan without hearing from her first, the nurse wanted to wait before I was contacted. Then she told me that most people prefer to be told about scan results in person. I suggested, as a way to make this easier, the nurse could text me or leave a message on the new message system for the hospital.

“No”, she said, the nurse “would rather speak to you in person.”

The conversation had become uncomfortable for me. I kept thinking, “Why didn’t the nurse call me with that simple update just as it was relayed to me now?” The even more important question was why didn’t my doctor call me? Could my expectations be too high? Somehow I think we will be re-visiting this conversation in the future. UGH!

Next issue—blood-work.

I hope everyone has someone who can manage their care when they are too sick and weak to do it themselves. If I was not able to care for myself and had no one to help me, I would not be getting blood-work done today.

During our recent meeting, my oncologist had told me to get my blood-work done locally either by my primary care doctor or my former oncologist. This showed she was at least aware of the distance I had to travel to see her. This way I would not drive so far with the possibility of being told I could not have treatment. With that plan in place, I was given no further guidance of how I might get this done. (My primary care doctor retired last year. I have not found another.) Navigating our healthcare system seems to me to be far more difficult than it should be. There are locked doors everywhere. Doors that can only be unlocked by other healthcare professionals. So why I was sent out into the jungle to do this on my own, I have no idea. 

I called my former oncologist’s office. After going around and around with the a nurse about who I was and what I needed, we finally decided I had to get an order sent from my present oncologist’s for this simple request of getting my blood counts analyzed. I worked that out. It took me staying on top of the request, but it was finally done. Soon a call came from another nurse to set-up a time to get this done. Time set—yeah, all done.

Well . . . nope. Not quite.

My phone buzzed. I answered and soon discovered my old oncologist decided not to allow me to have blood work done in his office because he hasn’t seen me in a long time; translation—I don’t think he knows who the hell I am. So, I am told I have to go elsewhere. It is late Thursday. This blood work is supposed to be done on Friday per the request of my oncologist. I verbalized my frustration to the nurse on the other end of the line. She was a bit gruff in the beginning, but actually turned out to be one of the nicest I have encountered in a while. Maybe she understood my frustration. She suggested I go to Labcorp.

“They may take walk-ins,” she said.

My next thought was to go to Medac-- oh wait, I am sure they will need an order from my oncologist.

After learning, again, life is never free of complications, I sat down in a Subway restaurant and opened my computer to search for places I could have blood work done on a walk-in basis. My daughters and I were away from home and it was around 3:30, so I thought I better start to figure out what I was going to do.

My search began, but was soon interrupted by the buzz of my phone.

“Oh,” I said. “Thank you. And, tell Dr. A. I really appreciate this.”

My former oncologist had changed his mind, again. I am not sure what happened on the other end of the line, but I didn’t need to concern myself with that cause a door had opened for me. I was getting my blood test done!

So, there it is. My expectations of how my doctors and nurses involved in my care respond will always be high. I am paying them for a service am I not? Unfortunately, I feel certain I will be disappointed again. Thankfully, I have jumped some hurdles for now. I see the next one coming at 3:00 today. Let’s hope I clear it. 

Oops, I knocked it down. Platelets have only risen slightly to 86,000. Disappointing.

Monday I will find out for sure (if I receive a call) if treatment will be delayed another week. Darn platelets . . . grrrrrrr. 

How a CAT Scan Works

Chemo #7

Sept 9 2013
Wow, the day is beautiful!  It is perfect for a road trip.  Too bad this road trip is to Chapel Hill.  Of course I want to go, but at the same time I do not because I hate feeling sick.  I go, though, because I want to live as long as possible. 

Greg and I arrive right at 10:00 am which is the time of my first appointment.  I really am not worried about being late today because I spend quite a bit of time waiting for my appointments anyway even if I arrive early.  It was true about my having to wait.  I was called to have my port accessed and blood taken at 10:37.  Then I went to the next area to alert all involved that I was ready for my next appointment.  Today I was seeing the nurse practitioner, Ms. O., instead of my oncologist.   I had met her previously and liked her right away. 

The best description of how a CAT scan works

Today, there was still no radiology report from UNC-Chapel Hill.  The nurse practitioner said she would look into why this had not been done.  “You requested it, she said, it should be here.”  In the two previous appointments, I had requested that someone at UNC-CH look at my CAT scan to determine if the lung tumors had possibly shrunk. On an earlier scan, the largest was 7 mm with 5 tumors being seen.  On the newest scan the largest was 3 mm and there were only 2 tumors noted.  In an effort to try to explain to me how this might have occurred, Ms. O. gave me the best analogy I have heard on how a CAT scan can miss tumors and how a large tumor may appear smaller than it is.  She explained it this way.  “Think of the area to be scanned as a piece of bread with raisins scattered throughout.  The scan slices that piece of bread every 5 mm.  The spaces in between are where tumors 
cannot be seen.  For a larger tumor, the CAT scan may only slice the tumor at the end of it therefore it may show a 3 mm sized tumor instead of the 7 mm that it may actually be.”  That created a wonderful visual for me.  So for now, I will have to let go of my hope that the tumors have shrunk and be thankful that everything appears stable at this time.

Note:  My oncologist has said the CAT scan can show tumors as small as 2 mm. 

Side-Effects

We also discussed my diarrhea problem.  Ms. O. let me know that I could take more than the recommended dosage of Imodium until it was under control.  She said, “If you become constipated then you know you have taken enough.  One thing you can do is keep a journal of what you eat and drink to see if what you are eating is causing the diarrhea.  Then you would know what to avoid.” 

Flu Shot

During my conversation with Ms. O., I inquired about getting a flu shot.  In the past, I have not had the flu shot because I believed the shot was developed for the new flu season based on what developers believed the strain would become in the following flu season.  The vaccine was an educated guess, so there is no guarantee.  With all that being true, Ms. O. still believes I should get the shot.  I really don’t want to get sick especially with my compromised white blood cell count.  I expressed concern about getting sick from the inoculation.  Ms. O. said that the shot is fine.  You should stay away from the nasal spray because that contains the live virus.  You could contract the flu from that.  So with that, I suppose a shot is in order.

Shingles Shot

I also inquired about the shingles vaccine.  Ms. O said not to get that vaccine because it was only given nasally and, like the flu vaccine, it contains the live virus.  There is no shot for that one.  With a compromised immune system, I won’t be getting that vaccine.

Cough
Since I am having a difficult time figuring out what the cause of my coughing is, I asked Ms. O. if it were possibile that my cough was caused by the nerves surrounding the tumor between my lungs. She said, “It could, but really there is no way to be sure.  You should consider continuing to use your daily inhaler as this may help keep your airways open”.  The inhaler tends to make my hoarseness worse, but the coughing episodes are completely unpleasant.  I will go back to using my daily inhaler.  Perhaps I will notice a difference this time.

Lympheodema
I had one mild complaint for Ms. O..  My lympheodema in my right hand had worsened.  She said, ”Taxotere is to blame.  It causes inflammation and causes edema (swelling of tissues), so there is nothing I can do but to wear my compression glove.  It is just another aspect of the new me.  Yuck!

Weight
My weight is now 102.7 pounds.  I have gained over ten pounds since my treatment began.  My weight had gotten so low before I knew the trouble my body was really facing.  Irritable Bowel Syndrome was to blame.  It left me eating very plain food and lots of water.  For months, I had sought help from two gastroenterologists.  The last one sent me to Chapel Hill since he couldn’t figure out why I was not responding to the drugs that had been prescribed.  The doctor at UNC-CH explained that I was being over-medicated for acid reflux.  This was not my problem.  He prescribed the right drug and soon I was eating and drinking whatever I wanted. 

The steroids, too, have probably helped me gain weight.  I am glad I have gained weight, but, the negative aspect from steroid use is it tends to swell my belly area.  It makes me feel really uncomfortable.  Stomach pooches have always been my nemesis, but this feels much worse.

After the doctor, it was on to the infusion room.  The appointment was at 12:00, but of course there was the waiting time.  By the time the pills were taken, the Pepcid had been given through my port, and the saline solution was dripping into my body, I estimated all would be completed by 5:10 pm with still two hours to drive home.  That is a better time than many of my previous appointments have been, so a good day overall.