Coming Out of the Dark--One More Chemo to Go.......

6/30/13--Sunday--Day 260--There IS a Light at the End of the Tunnel

May and June have been extremely busy months.  We have been out of town five of the nine weekends and we hosted company at our house two additional weekends.  I guess that has been a good thing because it has helped me not focus too much on the challenging effects of the crazy chemo I've been going through.  At my last post, I had made it through most of week two without too much fatigue, but by the weekend, on a trip out of town the fatigue hit.

That Thursday, June 6th, would have been my grandmother's 100th birthday.  We had planned her 100th birthday party for Saturday, June 8th.  After her death in April, we decided to celebrate her life on that day and were going to spread her and my grandpa's ashes up on the Rim, but because of the severe heat and my niece just having her baby, my aunt decided to hold off and do something to honor my grandparents later on when it is cooler.  But Brooklyn was home and wanted to be part of honoring my grandmother, and my sister and her family from Michigan had come for the celebration as well.  So we decided to spend the day honoring my grandmother as planned, but just with our family.  We made the trip to Cottonwood in our motorhome, which I was grateful for because I was able to lay on the couch and rest.  It also helped with sleeping arrangements since our Albuquerque friends, Mike and Suzie, joined us, plus, with the three of us and my sister's family, there just wasn't enough space for everyone at my Dad's.  Saturday morning we all drove up to the Rim.  It was a great day reminiscing and telling favorite memories and stories of my grandparents.  With a little help, I joined everyone on a small hike to an opening looking off the Rim.  We spread out a couple of blankets and took in the wonderful view before making our way back to a shady campsite where we sat and shared our stories.  Though my energy level was super low, and by the end of the day I was having trouble walking, I was so glad we made the extra effort to follow through with the plans.  It brought the closure we needed and made for a great weekend with family.

We stayed in Cottonwood until Monday morning.  From there, we drove to Show Low to meet up with the administrative team for our retreat Monday and Tuesday.  I had been worried about whether I would feel up to attending the retreat, but since it was the first one we have had in over a decade, I really wanted to be part of it.  I was glad it was during week three when I usually felt better.  The original plan was all women were sharing rooms at a hotel, but I had become very nervous about doing that.  First, with the diarrhea that accompanies the chemo, I'm up several times a night.  Second, I have been wearing cute hats and scarfs to work, but I really wasn't ready to be bald in a room with co-workers.  Also, my eyelash crisis had hit me hard, my eyebrows were now completely gone, and my hair was finally completely gone.  Most importantly, I just wasn't comfortable being away from Greg, especially when I hit that wall of fatigue.  So we knew driving the motorhome to Cottonwood and then to Show Low would fix a lot of problems.  In Show Low, we parked just outside of the cabin where the retreat was being held.  And while I missed the fun activities and comradery coming and going with the group, having Greg there in the motorhome made for a much better stay.  I made it through the activities during the retreat.   By dinner, however, I was super fatigued so I found a spot on the couch to sit with my feet up and rest while visiting with the group.  I felt bad not helping with dinner preparations, but I was done.  Greg worked on websites for both days and we made the trip home without incident.

After the retreat, I worked only one day in the office, Wednesday, before heading back to Mesa for chemo #3.  Brooklyn went with us to the Cancer Center on June 13th.  First we went to do labs, where, after three attempts by two two different nurses, they couldn't access by port, so they sent me up to see Heather on the infusion floor.  I should have gone to Heather first.  It's not like I didn't know that, but I always feel bad having to be the exception.  Heather accessed my port first time, then we went to the second floor for my appointment with Dr. C.  When I showed Dr. C. my completely bald head and my missing eye lashes, she reassured me that within about three to four months after chemo, my hair would be about the length of hers.  However, it was a different statement that she made that shocked me and has really hung on my heart.  I asked her if a year from now, would I have another PET scan to see if the chemo had worked and all the cancer was gone.  Her reply, "You won't have another PET scan unless you start showing symptoms that the cancer has returned."  I was shocked.  I never really had any symptoms in the first place so how was that going to work?  She said insurance wouldn't pay for another scan unless there were symptoms, and they, the doctors, wouldn't want to expose my body to the radioactivity unless it was necessary.  Then she said, "Susan, treating cancer is an act of faith.  We do what has been proven to work, and you have to have faith that it has worked."  My heart sank and those words rang in my ears over and over.  That's when I realized, there isn't going to be a clean bill of health, a stamp of reassurance that everything has worked and the cancer is all gone.  It truly is going to be believing that after doing all of this, we've done everything we can and we simply have to BELIEVE it's all gone and it worked.  Wow, what a wakeup call.  It makes sense logically, but it was still a shock.  I know the PET scan only shows tumors that are larger than a millimeter, and if the chemo and radiation did it's job, nothing would show up.  But I guess I was hoping to have confirmation when nothing showed up on the PET scan.  But then again, would that be false hope since everything would be / should be smaller than that after chemo and radiation anyways?  While it was logical, it was just unsettling.  An act of faith--I simply have to believe it's all gone.  That does make the fear of it returning even greater.  What if the mammary gland tumor didn't shrink?  What if it is still there?  But how could it be?  If chemo shrinks large tumors, surely that small of a tumor has been taken care of.  And they took out all of the other tumors.  Faith--I have to believe.  I know they will continue to take tumor markers, and with appointments every few months for the next five years, the doctors will be watching for any symptoms.  It was a new concept and it was going to take time for that to sink in.

After that discussion, I described my anxiety and fogginess to Dr. C which begins the first day I'm off of the steroids   Since I wasn't experiencing any nausea or bad reactions, she wanted to have the pharmacist, Mike, come in and talk about cutting down the amount of steroids I had been taking.  After she left, Mike came in and agreed with Dr. C. about reducing the steroids.  Instead of two a day for the first three days, he wanted me to take only one a day.  He felt what I was experiencing was a bit of steroid psychosis so reducing the amount of steroids in my body should reduce those effects. 

Following our discussion with Mike, we went back to the infusion floor and Cheryl started the tangled mess of tubes which now make up my chemo treatments.  It looks much different now than it did the last time Brooklyn went with me in March.  Cheryl was sad to tell us that she would be on vacation during my last chemo on July 3rd.  She was truly heart-broken after all that we have been through together.  We were too but promised to send her pictures and stop in to see her when she returned.

Infusion went well and once we were finished, we went to the first floor to meet with Dr. Grade, the radiologist I had seen back in November.  We were finally ready to start planning for the six weeks of radiation.  I was glad to get a plan in place but mostly, to get a "IT'S FINALLY OVER" date.  I explained we were trying to work around a trip to California in late July to celebrate Preston's 21st birthday, as well as a trip to Idaho in late August to move Brooklyn into the BSU dorms.  She said missing one day in August would not be a problem, and we decided to start after the California trip because she was going to be out of town at that same time anyways.  So the radiation start date would be August 1st.  That day they will do what they call "mapping", which I guess involves placing some sticky tags on me of some kind, which have to stay on until the following week.  They take measurements and place all kinds of data into the computer.  The following Tuesday, they / the computer have a plan and take me through what they call a dry run. Then radiation starts the following day, Wednesday, August 7th, on our 31st wedding anniversary.  I have 30 treatments so that should make my final treatment on September 18th.  So that was it--the date we have been looking forward to.  Twenty-six days short of one year from when this thing started on October 14th, 2012, it would all be over.  That was a little surreal, but I finally felt like I could plan the last leg of the race.  From what Dr. Grade said, it seems like this part of the race will be all downhill, a lot easier than this last phase of chemo has been.  Now we could make some plans.

From there we headed home, but only for the night.  With such a busy month ahead, we knew that weekend would be the only weekend to take Brooklyn to the lake.  Plus, during my first weekend after chemo, I have the most energy because of the steroids.  Friday morning we headed to the lake where Greg, Brooklyn and I spent the day on the water.  Friday night Preston and Yuri met us and Saturday morning my dad, my sister, Sharon, and her daughter, Sarah, drove up for the day.  We had such a great time.  I did get nauseated late in the afternoon Saturday and the drive home proved to be a challenge.  A breeze kept it tolerable and not too hot, but since the motorhome wouldn't sleep that many, and it was too hot to sleep outside, everyone followed us home late Saturday night so we could celebrate Fathers' Day together on Sunday.

Only taking one steroid a day instead of two seemed to help me not be as foggy or have as much anxiety; however, I did have to use some of the nausea pills.  Being a little nauseated was worth not being so foggy or anxious.  I also notice that what usually hits Monday evening, actually hit Monday morning before I went to work.  I was nervous and a bit anxious, but since it wasn't as severe, it was manageable, even at work.  In fact being at work focused on projects actually helped me not be as anxious.  I managed through Monday and Tuesday but by Wednesday morning, I was super sick.  More sick than I had been.  The nausea pills helped but my body was just exhausted with fatigue.

After spending the weekend with my dad, my sister and I realized he had come to a point where he was ready for us to go through more of my mom's stuff.  He seemed to be at a point of acceptance and he was ready to move forward and start creating a new life, which was good.  I knew whenever he was ready, we also needed to be ready.  Though I was originally planning to work that week, Sharon agreed to stay an extra week if I would go to Cottonwood and we could go through the stuff my dad wanted us to.  That would be the beginning of week two, when my fatigue would be high, but I knew I needed to do it.  So even though I was super sick, I rode to Cottonwood on Wednesday with Sharon and spent the next four days going through lots of memories and keepsakes.  I rested between projects and took things slowly, but I pushed forward accomplishing everything I set out to do.  I know my dad was relieved to get it done and I was super glad to do it when Sharon was there to help.  It was a lot of work and I don't know how I would have done it by myself.

I returned home Sunday thanks to Brooklyn who came up Saturday to pick me up.  That started the last week in June, my last week before Brookie returned to Idaho :(  Trina, my friend with whom Brooklyn has been living in Idaho, decided to drive to Arizona to do some business and to celebrate her husband, Brannon's, 50th birthday, which also gave Brooklyn a ride back to Idaho.  I worked Monday and Trina and her kiddos arrived Monday evening.  We enjoyed a day visiting Tuesday and I worked again Wednesday while Trina went to Phoenix for business and to pick up Brannon from the airport.  Thursday and Friday were spend enjoying company and my daughter before they headed out Saturday morning.  Saturday brought the end of two full weeks of being super busy with activities and company.  I was so glad Brookie came to stay for the month of June.  Having her here gave me so much strength and helped distract me from the chemo.  It was like finally having a friend join me on the back side of the marathon.  I so needed that encouragement and distraction.

Despite being super busy, overall, chemo three was really, really challenging.  It was truly the worst so far, I'm sure because of the build-up in my system.  I was much more nauseated and fatigued than I had been with the first two so I am not at all looking forward to doing chemo one more time.  At the same time, I keep trying to focus on this next one, July 3rd, being the last one.  Interestingly, over the last week, tons of new eyelashes have started to sprout, my eyebrows are appearing and I have a head full of soft fuzzy hair that has started to grow.  I even have hair growing on my legs again.  That seems really strange to me.  It's almost like chemo three didn't work and my body thinks it's all over.  I'm sure that's not it because I was way too sick, but it's really odd.  I am curious if I am going to lose it all again after my last chemo on Wednesday.  It will make for an interesting three weeks--will my hair and lashes remain and keep growing or will everything fall out once again.  Either way, Wednesday will mark the beginning of the end of this whole process and I can finally see, There IS a Light at the End of the Tunnel!