Putting the happy back in chemotherhappy

Again, remember, this post (actually I guess all of them) is coming from the point of view of the caregiver. This paragraph in particular is my point of view that may or may not be shared by the caregivee. I have actually been wanting Pam's hair to fall out. Not just because it will save hundreds on hair product and hours of prep time (which she told me not to expect to change), but because I like to see that the drugs are doing their job. So I am at least a little happy to know this chemotherapy is attacking cells as promoted. Pam's side effects in 09 are a far cry from those in 05. We couldn't miss them then. This time they have been vague. Increased lack of energy. Aches and pains. Slight bleeding. Increased insomnia. They were vague enough that this caregiver was actually wondering if the dosing was maybe too light or too spread out.

Friday night we went to the Bradley Braves Club & Women's basketball team's "Pink Zone" reception. It is a fund/awareness-raiser for breast cancer and the Susan G. Komen Foundation. No one could have guessed Pam was 1/4 the way through chemo as she attended. Few there knew she was a recurrent breast cancer patient. Yesterday Pam met with some friends over lunch and discussed a book called "The Shack" (book talk...boring...caregiver point of view). She made it home in time to head to church to lead her group of 2nd/3rd graders. She even ok'd going to Avanti's after church with some of our incredible friends (didn't think that would happen with her lack-o-energy). Finally we made it home.

Pam was in the bathroom for a long time last night, the door was cracked. I finally peered in. There she stood with a sink full of hair. It started coming out a few days earlier. It seemed ok all day yesterday, but that may have been the massive amount of sticky hair products keeping it attached. So she pulled and pulled. Occasionally she would look at me and ask "Do you think it is just thinning or is it all coming out?" Time to be a man, so I replied, "What do you think?" She looked away and kept pulling. Pam was toying with the idea of just shaving the rest off. So she asked me if she should get out the clippers. I manned up and said "Do you want me to shave it off?" She went back to pulling.

This step was easy four years ago when she was disengaged from life and reality during chemo. She simply stumbled out of her bed, said "shave it off it's falling out all over the bed," then went back to bed and awoke a couple months later. This time though, she is fully aware of every step of treatment.

It is very important to Pam how the kids are affected by her illness and treatments. They are in on most every move she/we make. This step needed their input. We called the kids in to view the hair. After having everyone of us view her scalp and take some tugs, Pam finally told us to shave it. In unison the kids both said "I'm first." We worked out that detail and began shaving. It was a slow process, couldn't risk any knicks, she already has enough problems with her bleeding. Josh and Erin stuck around for the first fifteen minutes. The next hour and a half it was up to me to slowly shave her head without putting any pressure on the razor. I can relate to the pressure Sully was under as he landed that plane in the Hudson. But it took longer to shave Pam's head, so I think this was probably harder. When it was complete Pam looked at me and said, "Do you really think it was all going to fall out?" I said of course. She then said, "What if I wake up in the morning and there is stubble?" Argh. My reply was just a blank stare. I have been regretting the short hair cut I talked her into for 17 days now. She finally let me off the hook with a smile.

So this morning Pam awoke to a camera in her face (caregivers point of view). She is bald for the second time in her adult life. Not as big a deal as most people might think. At least not a big deal for someone like Pam who has a nicely shaped head. Here you go.

The saga continues

The treatments are now on Wednesdays. Just works better for us. Except for today when Pam awoke with a huge migraine. She has been a regular migraine sufferer for the past 4 years. As hard as it must be to believe, the migraine took all the fun out of getting chemotherapy today. Today was to have been a two drug day. The long day, 9AM to ?. In addition to the migraine, Pam has had some bleeding problems which changed the schedule. A mini conference and a physical exam were added to the agenda and in the end Avastin was eliminated from today's menu. So, protocol for Pam has been broken already. Avastin is important to her treatment and will be reintroduced at the next chemo day, which is in two weeks (Pam gets a week off next week). So today it was just the three pre-chemo bags, one hydration and then taxol. We were out by 1:15PM and home by 1:45PM.


Pam was placed in a private room today, keeping her in the dark to help her head. She curled up and pulled the covers over her head and that was about it. The only exciting part was when her problem blood defied gravity and shot out of her body through the tubes straight up to the bags of meds. I had never witnessed that before. Kind of a curious sight.


Lori W. stopped in as usual to check on Pam. Amy C. came to provide some bedside company and almost missed us due to the unexpectedly brief stay. They were both reassuring visitors nontheless and encouraged Pam on a rather dark day, a day that she really doesn't feel well, following a week of not feeling well. The little energy she had is now gone.


One thing about Pam's hair, which you cannot see in the photo, it hasn't fallen out. If it doesn't fall out, I might be in the doghouse for talking her into cutting it short. She misses her long hair a lot. She is wishing she hadn't cut if off so hastily (what was she thinking?).

Comfortably Numb

Monday was treatment number 2. It went quite well. Three pre-chemo drugs still, but just one chemo. In at 8AM(ish) and out at 2PM. Looks like six hours will be the norm for four of the treatments and eight hours for the other eight. A clearer plan of the treatment schedule was calculated Monday and it only took us 6 hours and talks with one doctor, one friend (who happens to be a drug rep/cancer patient) and two nurses to understand it. Pam had taken extra "calming" meds Monday, so she wasn't tracking very well. I have a video that I am not allowed to post that would clearly show the mellow side of Pam, the Pink Floyd comfy numb Pam. She needs to stay pretty numb for me to get away with posting it. The two non-blue dot pics are frames from that video taken Monday. I took just one photo Monday, but neither Pam, nor her buddy Gina K. would sign the release for me to use the unedited shot. We make the best of the therapy days. It isn't the most fun place to be and last Monday Pam was clearly the youngest one in the pod by probably 20 years, depressing.

Like I said, the schedule has been set. Sadly it took me the same six hours to understand it and I don't take any drugs. I can't even figure out what day it is about half the time. I am just glad there aren't any embarassing videos of me that could end up on the internet. The schedule...12 treatments total, 4 sets of 4. Each set, #1 & #3 taxol/avastin, #2 just taxol, #4...nothing, a week off. Assuming she stays healthy and can make each treatment, her last day of chemo will be May 13th.

Pam is still pretty healthy. Her blood numbers remained high after round one. They are expected to begin to noticably drop starting now. So if you have an illness, Pam will have to avoid you. Her body can't battle infections from this point on. Her energy level, which has stayed pretty high, will also diminish soon. She is not sleeping well. However, this is not newsworthy, actually normal for Pam. She has also maintained an appetite. All good.

What is hardest to control are the emotions. As each chemotherapy draws near, the sleepless nights are spent thinking. Those thoughts are a constant battle. Monday morning I entered the bathroom, knowing Pam hadn't slept. When I looked at the mirror it had eight 2x3 post-its stuck to it that weren't there the night before. Each contained a verse written on it (Zeph. 3:17, Phil. 4:13, Isa. 41:10, Isa.40:31, 2 Cor. 1:3-4, Phil. 4:7, Phil. 4:8, and Psalm 107:1). She was preparing herself, reminding herself that God is with her through this trial.

There are many hard parts of dealing with cancer. Showing strength and peace through this isn't easy, but necessary. Two very important sets of eyes are up-close witnesses to all of this, for the second time in four years. Josh and Erin were 8 and 5 when the worst cancer and chemo had to offer visited our home. Thankfully, at 12 and 9, they are seeing the chemo experience we had heard of but Pam never personally experienced. Managable treatments (so far). That is a blessing we hope continues, both for Pam and for the kids who are on this ride as well. She desperately needs to do this entire cycle of treatments. It needs to continue this well. Thanks for that specific prayer.

I write this blog specifically about Pam, but with the knowledge that everyone has battles they are in (health, financial, spiritual, marital, etc.). One thing that gnaws at Pam and really bothers her is that her situation forces her to think of herself way more than she cares to. Sometimes she needs to just talk it out, but more and more she needs to be distracted. She needs to use this odd gift of cancer to encourage others. So if you are talking to her and she changes the subject from how she is doing to how you are doing, or what she can pray for for you, she means it. It is healthy for her. She is being blessed by so many people serving her and praying for her, and she needs the opportunity to return that blessing by using some of her sleepless thinking time to think of and pray for others. Let her know.

How's my hair look?

I feel I need to share a text Pam sent me this afternoon. But first a little background. Pam had a very significant amount of her hair cut off today. She surprised the kids by picking them up with the new "witness protection" hairdo (witness protection - as in - she looks quite different - and she is still adjusting to it, so the photo above is vague...and she didn't have makeup on and wasn't thrilled the camera came out). This is the text message I received...

erin got in the car &

said "i luv it! You look

like Kate Gosselin b4 she

lightened her hair."

When Josh got to the

car Erin asked, "Who do

u think Mom looks

like?" Josh said, "Dad."

This is different

Something wierd and different happened yesterday. Pam didn't react to her first chemo treatment. I have to tell you, this is strange. I mean we were praying for this...many, many were praying for this. Why would I be surprised? Oh me of little faith. Psalm 5:3 In the morning, O Lord, you hear my voice; in the morning I lay my requests before you and wait in expectation. I am doing the praying, and I know God hears it, it's just my expectations... (Now I am going to finish this thought. I think I am so used to bad things happening that I pray for the bad to be less bad sometimes. I am sure I have been praying for her reactions to be less bad than the last time. I am thanking those of you who prayed for no reactions, because I don't think I was praying correctly).

Pam entered the cancer center yesterday for her first treatment a little stressed. OK, a lot stressed. During the administration of the three pre-chemo drugs, two people in the room had reactions to Avastin (the first drug planned for Pam). It is hard to not notice in this room (called Pod B) of 15 chairs. It is obvious as all the nurses converge on the struggling patient. Pam didn't even look. She just stared straight ahead out the window. Her thoughts were easy to guess...will that be me? The Avastin was set on a slow drip. All seemed fine. However, at one point I noticed some red spots on her neck. Before I could signal a nurse the hives covered her face as well. But a slowing of the drip and the addition of a bag of saline to dilute the drug stopped whatever was going on. Whew. But the drip was so slow now, this was looking like an even longer day than we expected.

Taxol was the second drug for Pam. Again, slow drips. Really slow. And when her throat started to close up (uh oh), the drip was slowed even more. This helped. Little by little the room was emptying. Pam's arrival time was 9:30AM. At this pace we were wondering if she would finish in the daylight. And then the young woman nearest Pam, also a breast cancer patient, had the reaction of reactions. Hard to witness, but there was nowhere to hide from these sights and sounds. During Pam's first trip through chemotherapy, we just didn't see people going into shock. This was the first treatment of twelve and there were three, argh.

By the time Pam's drips stopped dripping, she was the lone patient. The room had filled, emptied, refilled and emptied again during the day as Pam sat and took her medicine. Only one nurse and the cleaning crew watched her exit at 5PMish. But going slow seemed to really help her. I waited all night for a reaction. Sometime between midnight and 1AM I gave up and went to sleep. I talked to her at about 4:45AM and while her skin felt oddly hot, she said she felt fine. Same today. Prayers have been answered in the most desired way. Thanks for praying.

9:30pm, 2/3/09...maybe some reactions are beginning to show. The joint pain seems to be starting.