Blah

Three days after my first infusion, and I feel awful. Until now, I've managed a walk each morning and have done at least one productive thing before noon. But today my body aches in strange places and is so tired. I keep looking in the mirror, expecting my face to have turned green or something. Hopefully, this is the worst day of the chemotherapy cycle, and things will begin to look up again tomorrow. Meanwhile, I'm just lying low.

Infused with Peace

I just opened my email and was overwhelmed by kind notes sent yesterday, before and during my chemotherapy. THANKS! Your prayers did powerful things: despite my needle phobia and toxin phobia, everything went smoothly and was uneventful. I felt an unexpected peace.

Jane drove me to the clinic and stayed for the beginning (until I got sleepy from the Benadryl pumped in to prevent allergic reaction) -- she is a wonderfully calming presence. The nurses were kind and quick with needles. There were no scary sensations or pain. I just laid under my prayer shawl and listened to music for the 2.5 hours.

Even the days leading up to treatment were far more peace-filled than I would have anticipated, given my chemo-fears (and, yes, there is such thing as knowing too much; my medical writing career is a disadvantage in this situation). Now that I don't need radiation and have completed the surgery, I am motivated to just check off these 4 (now 3!!) infusions and get back to a normal life. The end is in sight!

I'm taking an unbelievable amount of medicine to counter side effects (and, of course, each of these has potential side effects), but so far, so good. The fatigue is likely to kick in tomorrow. So I'm going for a walk right now.

Many thanks to you all!

Update

Lots of doctor appointments this past week. It’s my new reality: days full of insurance calls, scheduling appointments, driving to Pennsylvania for appointments, etc. How do people work full time when they have cancer?? I am getting by with the help of my husband, mother (staying nearly a month), and all the friends who have been bringing meals and inviting our kids on playdates. THANKS! Also, thanks for all the nice cards and emails. I am encouraged! (And apologies to all those who were unable to leave a comment on this blog -- I'll try to figure out the problem.)

I have most of my energy back and have full use of my arm again. The surgeon is pleased with the healing. For those of you specifically praying for how I'll handle the physical results, I'm doing better than I expected, perhaps partly due to the recent practice of starting the reconstruction process at the time of the mastectomy.

I also met with a specialized physical therapist for tips on preventing lymphodema and for exercises to promote recovery. How does one prevent lymphodema? Unfortunately, it will require preventative measure for the rest of my life: avoiding any injury to my right arm (including sunburn and mosquito bites); never having blood draws or blood pressure taken from this arm; wearing a compression sleeve during air travel or at high altitude.

The lymphodema expert is also a cancer survivor who is my age. It was wonderful to talk to someone who has been through this recently and shares many concerns and challenges I face as a relatively young patient. She was full of encouragement and practical advice.

Yesterday I met with my oncologist, Dr. Richard Lee (brilliant doctor, family friend, and has an office 2 miles from our home; what a blessing since all other appointments are about 1 hour away!). We now have more details about the course of chemotherapy:

- I will start on Monday, March 28

- Treatment will be given in 4 infusions, with 3 weeks between them. This adds up to 12 weeks.

- Each infusion will be Cytoxan and Taxotere (as well as a "cocktail" of other required meds, like Benadryl to prevent allergic reaction, and an anti-nausea drug)

What does this mean? 

The pros are: (1) I will be finishing treatment before the kids start summer vacation. Hooray! Our long-awaited trip to Yellowstone National Park in June will hopefully still be permitted. (2) This regimen is much more appealing than the one originally considered: one that included adriamycin (another layer of toxicity, including potential heart damage; would require surgical insertion of a port since it's dangerous to infuse intravenously) and 8 infusions delivered every 2 weeks (16 weeks total). So, after considering the original regimen, I feel as if I'm getting off easy with a shorter, slightly less toxic regimen. Also, the adriamycin-containing regimen takes more than 4 hours to infuse, whereas mine will take only 2 hours: that means I can complete an infusion during my daughter's half-day kindergarten without needing further childcare arrangements.

The cons are all the side effects. The most visible will be hair loss. More later on this, but I can pretty much expect to lose my hair between April 7 and 12. The oncologist also explained to me the week-by-week cycle of some of the other side effects. I will likely experience exhaustion during the first week after each infusion. During the second week, I can expect my blood counts to fall low enough that I will be at high risk of infection. If the levels are severely low, I will be asked to alter my diet (eg, no raw vegetables or fruits) and avoid contact with people, including my own children. Any fever will land me in the hospital with an aggressive course of antibiotics. Please pray that my white blood cell counts remain sufficient! Nausea, a well-known side effect of chemotherapeutic drugs, is so well controlled by modern medicine that it only rarely bothers patients these days.

NO Radiation!!

I found out from my surgeon yesterday afternoon that I won't need radiation! I am so so so so so so so so so so so so so so so so so so so so so so so so so so so so so so so so so so so so so so so so so so so so so so so so so so so so so so so so so so so so so so so so so so so so so so so so so so so so so so so so so so so so so so so so so so so so so so so so so so so so so so glad. Radiation would have meant going to the hospital every day for 4 weeks after finishing chemotherapy (and would have taken place over the summer, which would have meant dragging the kids to the hospital every day for 4 weeks; and, of course, radiation has serious potential side effects).
I feel as if the end is in sight. SO glad!

Update

Funny story: My mom, when first arriving last week to care for us, asked how particular we are about locking the doors when we leave the house. I told her I’m pretty careful despite feeling safe in our neighborhood. Yesterday afternoon, she took the kids to a dentist appointment while I napped. When they returned, there was a beautiful, bountiful dinner laid out on the kitchen countertop – certain proof that an intruder (thanks, Jane!) had entered the unlocked house while I slept. It’s enough to make me reconsider my habit of locking the doors. Who knows how many meals we may have missed?

Update: My pain pump was taken out by a home health nurse on Sunday, and I’ve been doing well without prescription pain relief. The Drain is uncomfortable but is due to come out Thursday at my follow-up doctor appointment. I’ll be glad to be rid of the gruesome thing!

I’ve mainly posted about my physical health but have appreciated people’s concern about how I’m doing emotionally. As to be expected, my emotions are all over the place, depending on the day and circumstances. Here are some common ones:

Mourning: My diagnosis was a shock, but the cancer was caught early enough that my life has not been at stake. For this reason, I have not felt the relief of a survivor, as many patients do. Rather, I have mourned the loss of seemingly good health. It sounds ungrateful, I know, but there you have it. Recovery has been a good distraction. Right now, I am relieved to have the surgery behind me and am so heavily bandaged that I cannot see the surgical site. The bandages come off Thursday. Please pray that I can accept my physical changes with grace. 

Gratitude: While I’ve struggled to feel gratitude about cancer treatment that will restore my health, I have felt tremendous gratitude toward all the people God has placed in my life who have ministered to me with words of encouragement and wisdom or with meals and rides and other practical assistance. It’s overwhelming how much care I have received! I am also grateful for a more rapid and pain-free recovery than anticipated and for the much-prayed-for restful nights of sleep I experienced before each surgery. Also, the chemotherapy will also be of a shorter duration than originally expected (12 instead of 16 weeks), which will allow me to finish before the kids start summer vacation – that is a huge blessing!

Anxiety: As a needle-phobic person, I felt very anxious before the surgeries. Even the iv, though minor compared to the surgery, is traumatic. Now I feel relief to have that behind me. I am also nervous about chemotherapy – needles remaining over several hours. Please pray that I can see this treatment as a medicine rather than as a poison.

Impatience: Now that the surgery is done, I am very impatient to finish recovery and get past chemotherapy and back to “normal”. However, it is very clear to me that this is a time to slow down and wait on the Lord. I am certain there are important lessons are to be learned and I am to keep a calm and open heart to learn them thoroughly.

Today's Gratitudes (Actually, Last Thursday's)

1. Anesthesia
2. Percocet

Home

I'm home, as of yesterday noon. The embedded pain pump has been doing a good job but reached it's 50-hour limit. So now it's pain pills to the rescue and heaps of cushions to get comfortable.

The kids are pretty impressed with the breathing apparatus I'm supposed to use hourly to maintain lung capacity. It's getting a great deal of use (not necessarily from me), and the best comment so far, "Mom, you got SO many neat things from the hospital!"

Thanks again for the prayers on our behalf!

Anecdotes

- surgery about 3 hours
- 2 cups of ice and 5 glasses of water before attempting a bag of smuggled chips
- only 1 shot for pain during recovery (that built in painkiller pump is pretty handy. Igor wants one too.)
- 2 doctors and a nurse needed to approve release, hopefully by noon.

Step by Step

"Sid" is out of surgery and doing well, currently taking a nap while waiting for a room.

One more major step to wherever it is we're going.

Testing 1,2...1,2

I'm Sid's husband, and I've been invited to post here occasionally, so this is a test.

I needed to squeeze in one last work trip this week. We asked our small group from church to pray that I'd get home safely and quickly - being stuck in a random airport somewhere when I need to get home would be too much stress for all of us right now.

Well, I've never had two plane flights in a row that went so smoothly. Both flights arrived 40 minutes early. The power of prayer at work in the little things...

'Twas the Day Before Surgery...

Another emotional roller-coaster of a week! But things are falling into place, and I feel more at peace today. Many thanks to those of you who have been praying for us. My mother made it here safely from Wisconsin, and Husband made it home from a quick trip to Florida. The house is clean (relatively), and I enjoyed (relatively) one last jog today before the convalescence begins. I've even packed my bag for the hospital, including those detestable drain pouches.

Specific prayer requests:
1. Clean margins: that the surgeon manages to remove all the pre-cancerous cells (DCIS) so that I will not need radiation
2. A peaceful nights' sleep
3. That all goes smoothly for my mom, who will be holding down the fort while Husband takes me to the hospital, and for my kids, who will have a "normal" day of school. (Again, great thanks for Carolyn for doing all the kid-related transportation tomorrow AND having Sally over for a playdate AND providing a meal. We are blessed!)
4. That Husband and I have calm hearts tomorrow on the early morning drive to Holy Redeemer Hospital and during the pre-op routine; and a calm heart for Husband during the surgery

I was reminded again on my jog how often God tells us in the Bible not to worry. It isn't said disparagingly, as if to blow off our fears and anxieties as ridiculous or unfounded. Rather, He reminds us again and again to trust completely in Him. Right now, He is providing sufficient grace for right now. Tomorrow, He will provide sufficient grace for tomorrow. I rest in that promise.