Waiting for a Diagnosis / by Leslie

It's been more than a week since I have posted on my blog. I've been in Canada, spending time with my Mom, who likely has cancer. (Read Part One: My Mom Needs Some Positive Thoughts and Part Two: From Bad to Worse)

Dr. Lloyd Mack is her attending doctor, since Dr. Temple (who I previously mentioned was seeing her in Calgary) has been on vacation. Dr. Mack is also a top surgical oncologist in Canada and she is in very good hands, though he was a little reluctant at first to speak to my husband Chris on the phone. We've since designated Chris as our point person regarding results and medical decisions and now there shouldn't be a problem getting the doctor on the phone. It seems to help all of us when Chris gets a complete picture from the doctors on the phone. They are more straight forward with him and it's easier for my Mom since hearing the medical information can often be highly emotional for her.

Most of my time was spent with her in the hospital, or with my sister. Frustratingly, we still have not received a diagnosis. My Mom has had an MRI and a needle biopsy, and while the MRI and her symptoms (severe pain and weight loss) indicate cancer, the needle biopsy over a week ago was inconclusive. They did another one today, using an endoscopic ultrasound from inside her stomach to better target the area. Results might not come for a few days.

The largest part of the tumor is 6cm and it is either right next to the head of the pancreas or inside the pancreas, so a pancreatic/liver oncology team has gotten involved, headed by Dr. Elijah Dixon. So far my Mom is not showing signs of jaundice, which is a red flag for pancreatic cancer and they are doing urine tests to check for enzymes that if present would also indicate pancreatic cancer. There are pieces extending out from the main mass that have grown around nerves and blood vessels and so it may still be sarcoma, a soft tissue cancer. Dr Mack said that often when cancer is difficult to diagnose it is lymphoma and that is what we are hoping for because it responds to chemotherapy the most successfully out of the three. 

So for now, we just wait. Things seem to take forever. It was easier to wait when I was there with her in the hospital. Here, being away from her, it's harder to be patient. If this biopsy is also inconclusive, they will try the first type of needle biopsy again. If that is inconclusive they may have to operate again to get a decent sample to look at under the microscope. Everything hinges on the pathology. They need to know what this is before they can treat it.

When I got to Calgary, there had just been a massive, violent storm that had blown through. Someone had died, hundreds of calls went out all over the city for emergency services, highways were flooding, cars were stuck and stalled. You get the idea, it seemed like a fitting metaphor. However, one day when leaving the hospital, I spotted a double rainbow over the parking lot and that is the sign that I prefer to hang on to. I'm not going to freak out or anything (WHAT DOES IT MEAN??!!) but I will say that I can't remember the last time I saw a real life double rainbow. 

I had a gift for my Mom, from my mother-in-law, Maddy. I had asked her if she had anything to pass along, an evil eye or something that had maybe helped her through her husband's recent battle with lymphoma and subsequent bone marrow transplant. (Jerry is doing great, by the way, we think it's working!) What she decided to give my Mom was nothing less than one of the most beautiful gestures I have seen. Almost sixty years ago, Maddy's own mother had travelled to Italy and visited the Vatican. There she bought a few necklaces and keepsakes and returning home she gave them to her daughter. Maddy treasured them, one a tiny gold Virgin Mary medallion necklace. It gave her comfort over the years and helped her with her own struggles. She has never felt like giving it away to anyone but she gave that necklace to my Mom. I told her that we would just borrow it, but she insisted that she knew it was the right time to pass it along. She said she had a few other things from that trip that she was keeping and that she had checked that her daughter didn't mind. They thought it was a wonderful idea to give it to my Mom. I was so touched and honored to be able to put that little necklace around my Mom's neck.

Not a half an hour after giving it to her, my Dad arrived at the hospital with a gift from Annette. She just married my parent's dear friend Randy in Hawaii and my Dad is staying at thier house in Calgary while he visits my Mom. Unbelievably, her gift was also a Virgin Mary medallion necklace purchased at the Vatican! Annette bought the little white gold necklace four years ago when vacationing in Rome. I like to think that my Mom drew to herself exactly what she needed for strength. Not just one, but two Virgin Mary necklaces. Every day she touches them multiple times and finds comfort in them both. We were not very religious when I was growing up, but my Mom was raised Catholic and these treasures, besides being just really awesome, mean something special to her. It was enough to make us all cry.

My Dad also gave her a glass cube that says, "Even if I live a thousand lifetimes, you will still be my one, my only, my true love." Awwwww. Right? She has also received beautiful flowers, cards, letters, care packages and one pair of fuzzy purple slippers. I brought her an iPod with some books on tape, music and guided meditations. I think the best thing though has just been time spent with people; smiling, telling stories and holding hands.

My Mom's three sisters visited for what turned out to be an intense day. It was the first full day that I was there and we brought my Mom back to my sister's house so that we could all relax together outside of the hospital. The house was full of their energy, which on a normal day is palpable, but on this day was almost off the charts. It was like I could feel them all vibrating. They have so much worry, concern and love for her. She's also had visits from all four of my Dad's siblings, her nieces, nephews, cousins, and some friends. If love alone can see my Mom through this, she's got more than enough. 

I think my Mom worried that I would be bored sitting with her all day but being at the hospital goes by surprisingly fast. We would sit and talk, read magazines, go for a walk or fuss with her bed or her meals. One day we went looking for the hospital pants with the tie instead of the elastic. Details like that make a big difference in the hospital. I'd bring coffee for both of us every morning and she would tell me about how the previous night went. The first few were rough, but after we got her pain medications figured out, things went a little smoother. Her nurses would come in and check on her, taking her blood pressure and temperature. Visitors would come, I'd go pick up Jill at work and come back with her. She had roommates that we got to know, both Alex and Jason are also fighting cancer and you bond with these strangers and their families pretty quickly when you are sitting in the same boat. I didn't expect to make friends on the cancer ward, but I did. I helped Jason with his iPad and cheered when Alex got up to walk around for the first time after his surgery. We kind of had fun. 

We cried too, she's not ready to leave us. No one usually is, but especially not my Mom. She's young, only 61, and she has yet to meet my sister's children. I guess that's the saddest part, that she feels like she hasn't met all of us yet. She gave me a few solemn instructions. But we didn't dwell on those moments, they came, we cried and then they were gone. Mostly we enjoyed being with each other, laughing about how I fussed over her, cutting her peaches at lunch. She said, "I have cancer, I am not an invalid!" I heard a few of her favorite stories about her own mother, like the time she took her and her sisters for haircuts at the salon she worked at and I brought some old pictures and took notes while her and her sisters talked about old times.

My Mom came up with an analogy of a garden and the cancer is a weed that she needs to snip away at. Her body is the soil and she should try to make sure that the soil doesn't contain things that cancer likes to have to grow. I would like her to quit smoking, to cut out sugary snacks like Reese Pieces, to drink green tea instead of coffee and to eat organic foods but these things are her choice and perhaps better dealt with in a few weeks or months, once a traditional course of treatment has beaten back the cancer and she is back at home, more comfortable and ready to tackle bigger changes in her life to promote her continued health.

So while this last week was lacking in a diagnosis and treatment plan, it was full of our family rallying together and pouring out our love for my Mom. I still wish there was more I could do. It sucks that I can't fix it, that I can't share it, that I can't do something more than just being there for a week, talking about it on the phone with her or calling her doctors. But I guess that's all any of us can do. Ultimately this is a battle that she has to get through on her own, though I hope it helps for her to know that we are there for her, even to just hold her hand, cry with her or laugh with her. We love her and we want her to get better so that we can continue to live and love life with her beside us.

Related posts:

Part 1: My Mom Needs Some Positive Thoughts

Part 2: From Bad to Worse

Part 4: My Mom Has A Pancreatic Neuroendocrine Tumor

Part 5: A Treatment Plan: Sandostatin and Peptide Receptor Radionuclide Therapy (PRRT)