I met with my oncologist yesterday. The appointment was not routine, rather, I requested the meeting in order to discuss the difficulties I have been having with maintenance chemotherapy. A bit of background: When I began maintenance chemo in August, I was told that it would be no big deal in comparison with the IP chemo I had just completed. I was assured that I could resume my regular activities and that I would feel much like my old self. The nurse told me then that the maintenance chemo would be "just like drinking water." Well, someone apparently poisoned the water hole. The maintenance has been horrible. I have experienced many of the same symptoms that I had with the regular IP chemo: debilitating leg pain, prolonged headaches, and EXTREME fatigue, to name a few. The big difference is that with IP chemo, I could plan to be sick for a few days, but I knew I would gradually feel better before it came around again. On the maintenance regimen, I am always either going to chemo or recovering from having been there. It is a constant cycle of misery and trying hard to get ahead. Even worse, my precious family is paying a very high price. I have been unable to do much of what I normally would. My Hubby is trying to take over for me in a lot of ways, but he is exhausted. I am doing minimal mothering, and the little cowboys deserve better.
So I said that to Dr. M. I told him that the quality of life that I have with the maintenance protocol is unacceptable to me and my family. I told him that I needed a change. I was worried that he might try to assure me that everything is fine, so I was greatly relieved when I described my symptoms to him and he said, "None of these things should be happening!" Good--I thought I was going crazy. We spent quite a while hashing out the details of a new chemo plan. In the end, it looked like this: I will not be receiving Taxol at all anymore. The once-a-week Taxol IV has been replaced with a once-a-day-Cytoxan pill (When I googled Cytoxan, one of the search results was "types of medicine for cats with breast cancer." Yikes!). The Cytoxan is another chemo drug--not as preferred as Taxol--but well-tolerated and effective. I will continue to receive Avastin as an antibody every other week and participate in the clinical study for that drug. The schedule remains the same: I will have a CT scan at the end of this cycle (mid-November), and another scan at the end of the sixth cycle (February-ish). At that time, if no new cancer shows up, I will be released from therapy and we will continue to monitor with scans and physical exams.
In addition to working out the chemotherapy mess, I also felt ready--sort of--to ask some hard questions. Up until now, we have dealt with whatever issue was at hand and pushed all of the looking-into-the-future things to the side. As my body and my treatment have changed, however, so has my thinking. As much as I wish it could be different, my reality is that my body is affected by a life-threatening illness. I very much want for Dr. M to tell me that without a doubt, I will live to be a very old woman. I want to hear that I will raise my little boys to be fine men. That I will sit in the front row at their high school graduations, that I will take them to college, and after I leave them in a dorm room somewhere, that I will go home and bake cookies for the care packages that I will send them. I want him to say that I will dance at their weddings and that their wives will be the daughters I never had. I want him to say that there will be plenty of time for Hubby and me to travel together, and to build our dream house with a huge porch where we will sip coffee in our rocking chairs when we are very old (but still very much in love). So I just asked him: Best guess...what does my future look like?
Deep breath. Almost certainly, the cancer will return. Hopefully it will be a few years, during which time I will live like I want to live instead of living according to what cancer dictates. When it does come back, it will most likely redevelop in the pelvic region, and everything I've done this year will need to be done again. Will cancer kill me? Maybe, maybe not. Dr. M is noncommittal, although we got a big lecture about the power of positive thinking.
All in all, the news and the steps taken have left me cautiously optimistic. I have been so sick for so long that I almost expect the next thing, whatever it is, to be bad. Today my weary body and my discouraged heart feel ready. I am ready to try again, and encouraged to start putting one foot in front of the other. The journey is l-o-n-g, and the steps are so small. At the same time, my God is SO BIG. Even in my days of despair, He has been faithful and excessive in the ways that He shows His love for me.
"I will be glad and rejoice in your love, for you saw my affliction and knew the anguish of my soul. You have not handed me over to the enemy but have set my feet in a spacious place." Psalm 31:7-8
I am trusting You, Lord, as we take these next small steps together. Give me the will to keep up the good fight and to keep pointing back to You. Help me to be the best wife and mom that I can be to my guys. Thank you for walking with me and flooding the path with Your light when I can't see where to go or what to do. I will continue to hold tightly to Your hand and follow Your lead. Amen.