"Where you invest your love, you invest your life."

Our mom has been asking us to start blogging about our feelings as we support her through her journey with cancer.  I can’t even begin to explain how difficult this is.  It’s a roller coaster that now seems to have the speed and intensity of a freight train.

Last Wednesday, Billie and I went with our mom to Tucson to see Dr. Chambers.  During her appointment, Dr. Chambers ordered an MRI to get a closer look at the lesions on her cervical spine and determine what is causing her lower back pain and pain in her left arm and shoulder.  We discussed her new treatment options at this point, which included the clinical trial mom mentioned last week or a drug called Abraxane.  Dr. Chamber was also still concerned that the lump in her right breast had not yet been biopsied.  That was scheduled for Thursday morning.  Essentially, we needed to determine if the lump is breast cancer, ovarian cancer, or best case scenario, neither.  In Dr. Chambers’ way, she said if mom has breast cancer too, it would be most unfortunate since it would complicate her course and options even further.  She would need to get another oncologist on board, a breast specialist, to collaborate with Dr. Chambers.  Dr. Chambers was also concerned that if she has breast cancer, rather than metastatic ovarian cancer to the breast, that she may not qualify for the clinical trial.  All of this made us pretty nervous.

When we met with the clinical trial team, we were excited to learn a secondary cancer would not exclude her.  YAY!!!  At this point, the phase one trial is open to patients with most cancers – they simply need to have the the HLA protein marker, which the vaccine is designed to target.  While there are other exclusion criteria, the bottom line is, if you don’t have the protein, you don’t qualify.  The clinical trial team took her blood and told us we would know in five days if she has the HLA marker.  They also told us to do some additional research on our own so we can feel a little more comfortable with the trial.  Just prior to walking out of the Arizona Cancer Center, Billie had found some additional information online.  Essentially, we learned that having a pleural effusion requiring drainage will exclude her.  Deflated again.  It was our understanding, however, that if the pleural effusion was under control and stable she could still potentially participate in the trial, assuming she has the protein marker.

On the drive home from Tucson, we had developed a master plan to fix the pleural effusion and get mom into the trial.  In our fantasy, we would get her pulmonologist to do the operation to extract the gummy-substance out of her right lung and attach it to her abdominal wall the very next day (January 3rd, I told you it was a fantasy).  In our brilliant plan, she would have a week to recover before Hawaii, followed by another week of recovery in Hawaii, and then she could come home and start the clinical trial.  Perfect!  We came home and went straight to her previously scheduled pulmonologist appointment and couldn’t wait to share our plan with him.  Unfortunately, however, the appointment didn’t go as planned.  He was no longer enthusiastic about operating on her.  In fact, he recommended that we focus on keeping her comfortable and he didn’t think it was worth putting her under the knife at this stage.  Wow.  We were not expecting this.  It was like someone had literally kicked us in the stomach.  We were heart-broken.

I went home and tried to pull myself together emotionally.  A little while later, Pete ran to AJ’s (the grocery store) to pick up dinner.  When he came home, he told me he ran into my mom there and she was really upset.  She was dealing with some of the unpleasantness of her legal separation when she received a call from her nurse with her CA-125 results (they weren’t ready when we left Tucson earlier in the day).  Another punch in the gut.  Her numbers took another jump from 511 to 1326 in only 3 weeks.  How is that possible?  Isn’t there a limit to how many times someone can get kicked while they are down?

On Thursday morning, I went with my mom to get her biopsy on the lump in her breast and then went to get an X-Ray of her chest so we can determine if her lungs are filling back up with fluid.  The good news is the tissue was a little softer than would usually be expected from breast cancer; or perhaps cancer in general.  We learned Friday afternoon that the lump is benign!  What a relief!  The roller coaster takes a good turn.

Her pulmonologist called this afternoon after reviewing her chest X-Ray.  He wants to see her in the morning.  We are somewhat suspicious fluid is building again.  Mom is really short of breath, has a frequent, productive cough, and is increasingly more fatigued.  If they are filling up again, we will try to get her drained before we leave for Hawaii.  We have far too many good times waiting for us to allow cancer to get in our way.

So, how does this all make me feel?  That’s impossible to describe.  In the most simple of terms, it sucks.  Over the years, I honestly believed that our mom was different and that she could survive this insidious disease.  She made it easy to believe in her because it was clear she believed in herself.  She has always been a model of strength and perseverance.  In fact, hope was not ever really shaken for me until we found out that the cancer had spread to her lungs and lymph nodes in March 2012.  I knew that was a game changer and for the first time, I was truly scared.  I tried to hold on to hope but felt it slipping away when she started developing allergies to the Cisplatin and Carboplatin.  Now the cancer is spreading and growing at a rate we cannot compete with and it is clear we have passed a point of no return.

It’s difficult to explain how I feel about all of this because my emotions shift so often.  Mostly, I’m overwhelmed.  I don’t know how to stop this freight train.  I think about her and worry constantly.   Typically my focus, however, is on this side of the process.  Mostly, I wonder how I can make her feel better, ease her pain, and make her laugh.  I think about how my sisters and I can make the most of our time, have fun, keep our mind off of things, and make lasting memories.

While I understand that our mom is sick, I am far from coming to terms with what the inevitable consequences of her disease will mean for her, my family, or me.   Not even close.   When I try to picture my life without her, I literally cannot breathe.   I am sure I will share all of these fears with you some other day – perhaps once I am living them.  Right now, I cannot spend time thinking about what life will be like without her.  She is my best friend.  Until only recently, our entire days were intertwined.  We would work out together every morning, we would carpool to the office, work on cases together, take our lunch break together, typically have dinner together, and spent our weekends together.  It’s not just me, every member of our family, husbands and kids included, can’t get enough time with her – we all want more.

As we continue down this road, I will use my time and energy trying to bring peace and joy into her life so she can live as long as possible with as much quality of life as possible.  I want to leave her without any doubt as to how much she is truly loved and adored.  I want to stay focused on our many blessings – especially how lucky I am to have her as my mother.  I will stay focused on how blessed I am to have my sisters, husband, family, and friends.  We are also blessed to have your continued love and support of our mom and family.  We are eternally grateful for the sense of community you have provided us.  It brings us all great peace to know we are not alone.

Love to all –

Michelle