Telling folks that I have cancer has turned out to be a difficult experience for me. Just as when I first realized what was going on -- I automatically jumped to the "Oh my God, I'm going to die!" conclusion -- often a similar reaction comes to folks when I share this with them. Sometimes it brings up memories of some loved one of theirs who have died of cancer, and my news can take them to those dark places. So although I have had a few months to assimilate what's going on for me, to put things into perspective, this is not the case of the person who is hearing this for the first time.
Breaking the news to our grand-daughters, Émilie (10) and Charlotte (5), has been quite different, since they don't have any experience with cancer. When I was first hospitalized for the biopsy, I told them both that I was going into the hospital for an operation. Emilie is VERY squeamish about any sort of medical intervention -- it took both her parents and the opthamologist to hold her down to put drops in her eyes a couple of years agos during a routine eye exam -- so I just gave her the minimum amount of information and then asked her to draw me a picture that I could take to the hospital with me, which she willingly did.
Charlotte, who has had lots of health problems with allergies, asthma, pneumonias, is rather intrigued by the whole area of medical interventions, as if she has assimilated that this actually helps you when you have something wrong. She often plays with the doctor and veterinarian kit with her stuffed animals when she comes to visit. I had previously explained to her upon my return from the hospital that I had been operated on and that the doctors had discovered that I had lumps in my stomach that they wanted to examine. I showed her the small scars on my abdomen when we were putting on our pyjamas so that she could see how insignificant they were. (She had also been bouncing around on the couch next to me and it was painful when I got bumped, so I thought that if I showed her, she might be more careful in the future, which has proved to be true.)
As previously posted, as part of the evolution of the treatment, I've now lost most of my hair. In fact, I have a sort of thin layer of peach fuzz, but for all practical purposes and appearance, I'm now bald. This is not something that would escape Charlotte's attention for long, so the last time that she spent the night with us, I decided to explain what was going on.
Mamie Lee: Do you remember when I went to the hospital for the lumps in my stomach? Well, the doctors found out what kind of lumps they are and are giving me a really strong medicine to make them disappear. But the medecine is SO strong that it even made my hair fall out!
Charlotte: Je veux voir. (I want to see.)
ML: Are you sure?
Charlotte: Oui, je veux voir.
So I take off my "indoor" bonnet and she immediately slapped her hands over her eyes. It was a hell of a hard moment for me, since I didn't know what was going to happen next. I put my bonnet back on and told her it was OK to look.
Charlotte, although taken aback, gave in to her natural curiosity. She comes closer and asks, "Est-ce que c'est doux?" (Is it soft?)
ML: If you stroke it in the right direction, it is.
She tries but doesn't like the way it feels. I then explain to her that it will all grow back when I'm finished with my treatment. She asks if I will have curly hair again and I told her that probably it would be just like before but that she would have to be patient since it will take a long time to grow back.
Charlotte: Donc, c'est pour ça que tu portes un bonnet tout le temps? (So, that's why you wear a bonnet all the time?)
ML: Yes, and since it seems to scare you when I take it off, I promise to always keep it on when you're around, OK? I just wanted to explain to you because I didn't want you to take off my bonnet while we were playing to make a joke and then see my head without any warning.
Charlotte: D'accord. (OK)
ML: I just hope that you still love me and that you're not too scared.
Charlotte: Je t'aime toujours mais je n'aime pas tes cheveux comme ça. (I still love you but I don't like your hair like that.) This literally brought tears to my eyes since I was very reassured and she seemed completely capable of sorting things out.
Later on in the evening, she raised the pants leg of my lounging pyjamas to look at my legs and asked if I was bald everywhere. I told her no that I still had hair but just not lots of it. She proved this to herself by pulling the hair on my arms!
The next day, when Papet was getting ready to drive her home he told her that he had actually saved my hair when he cut it so that we could compare the before and after hair. That really intrigued her and she said "Je veux voir.". Since they were on the way out the door, he told her maybe it would be better next time, to which she replied, "Non, maintenant.". So up they went to his bathroom where he had saved the hair clippings in a little pail (this was news to me!). She plunged her hand in and seemed to be comforted by the fact that it was familiar and "doux".
Upon arriving at home, she told the whole story to her mom, with Papet prompting with the right questions. Émilie who was having her lunch at the end of the table never said a word but was taking it all in.
So now when Charlotte sees me, after my initial greeting kisses, she then inspects me by peeking under the edge of the bonnet and then quickly lowering it again, then next pulling the hairs on my arm. All of this is very reassuring to me, since I know that she knows what's going on and that she's comfortable enough with it to interact with me.
As for the medical update, I had a meeting this week with both the oncologist and the surgeon. The results from last week's PET scan are very good -- the metabolic activity of all sites has diminished. The cancer markers in the blood are down, and the size of the big lump has been greatly reduced and has become softer. Surgery is tentatively planned for the 22nd of March, the final GO depending on results on interim exams.
I had my 3rd chemo yesterday and woke up this morning as if nothing had happened. I'm keeping my fingers crossed that this will keep up.
Emotionally, I hit a low point this week just before going to see the oncologist. I felt really tired of "keeping up a good front" and let it be known that now that I was not afraid of immediately croaking, I was becoming impatient with the accumulation of the pesky side effects of the treatment: disturbed sleep, tingling in the hands, restless legs at night, sore muscles under my "permanently installed"central line, hot flashes, heart palpitations,etc. etc. She prescribed something to help me sleep and suggested that I also take magnesium supplements for the hands and legs. She also reminded me that Bordet has an excellent team of psychologists who are there to help patients deal with how the cancer affects their lives and relationships. I immediately called them and had my first appointment with a psychologist who came to my room while I was having my chemotherapy yesterday. I was so relieved to have a neutral person with whom I could really let go and tell what's going on for me. We've already made an appointment to follow up on this.
One more tool in my tool box!
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