No Complications

Ann’s second and third rounds of chemotherapy occurred as scheduled and without complication on June 10 and July 1, respectively. They were largely a repeat of what occurred during the first round so below we’ll focus on only what was different, including a few fun stories.

Hair Loss Followed First Round

As expected, Ann’s hair fell out in clumps on June 7, Alison’s half birthday. By the time her second chemotherapy rolled around, most of her head was nearly bare with just a few wisps of thin, downy hair here and there. But, instead of the uniform baldness of Charles Shultz’s comic strip character Charlie Brown, she had several lonely long refuge hairs in the front like Linus; she has a comb over! That’s a lot more hair than she had during her 2003 treatment.

Second Round of Chemotherapy

Ann’s second chemotherapy began in the usual way, with a consultation with Ann’s medical oncologist, Dr. Merkel. He asked about her symptoms from the first round and ran through the specifics about: nausea, constipation, diarrhea, mouth tenderness, tongue lesions, and fatigue. She summed up by saying that apart from bone pain, her side effects were much less than during her 2003 treatments. Finally she said, “And this time I didn’t lose as much of my hair as last time.” To which, Dr. Merkel replied, “Well, I hope you aren’t complaining because this isn’t a hair removal service, you know.” We all laughed. It was an example of Dr. Merkel’s dry humor, a quality that we enjoy.

Dr. Merkel concluded that Ann had tolerated the first round well. He also reminded us that the first round of Neulasta usually causes more bone pain than later ones. Nevertheless, he reduced her dosage for the future injections.

After our consultation with Dr. Merkel, we went upstairs to the infusion room.

Soon after settling in, we were joined by Carol, a woman from Ann’s 2003 cancer patient support group at the Cancer Wellness Center. Carol was also treated for breast cancer at that time and she and Ann used the same (surgical, medical, and radiation) oncologists.

Carol came to keep Ann company during her infusion by playing Scrabble with her. Obviously, a serious Scrabble player, Carol arrived with a well-worn copy of the Official Scrabble Dictionary! Scrabble is one of Ann’s favorite board games but Nello doesn’t enjoy it so she rarely has a chance to play. As a result and strange as it may seem, Ann had been looking forward to this round of chemotherapy ever since Carol had offered to play with her. They delighted in their game as the deleterious drugs dripped down through Ann’s portacath and into her vein. At about the time that these pharmaceuticals began to affect Ann’s play, Peggy, another member of Ann’s 2003 support group, arrived. The nurses offered drinks—fruit juices—to each of us and we had a rousing reunion. After considerable cackling, Carol and Peggy had to leave for other obligations and, without their lively camaraderie, Ann started to succumb to her infusions’ soporific side effects. A nurse brought a warmed blanket for her and she shut her eyes. It was quiet except for the monotonous metronome of her infusion pump metering out the last of her Cytoxan. Finally, the drug dousing was done. After a squirt of Heparin into her port, we were free to go.

We drove north along the lakefront and took in what was left of a glorious day. Once home, Ann settled into bed to rest further as she began her descent.

During the next several days she became progressively weaker and uncomfortable, the result of collateral damage in the war her chemotherapy wages to destroy insurgent cells. It is a preemptive war; the PET/CT scan found no distant malignancies but her oncologists believe that cancer cells are circulating and will attack in the future if not routed now. Ann’s body becomes a battlefield. The chemotherapy is like poorly aimed, heavy artillery firing at anything—friend or foe— that moves until everywhere within range is a no man’s land.

We bided our time. Slowly, her body healed the damage caused by the chemotherapy. About a week before the next round, she was feeling almost herself.

Third Round of Chemotherapy

With the Independence Day holiday almost upon us, Ann wanted to be a bit festive for the third round of chemotherapy so on our way to Evanston we picked up a dozen doughnuts from Dunkin Donuts.

During our customary, pre-chemotherapy consultation with Dr. Merkel, we offered everyone his or her choice of doughnut. Dr. Merkel surprised us a little by selecting a chocolate one without hesitation but both his nurse and the accompanying pharmaceutical resident declined demurely.

Ann ran through the usual litany of side effects; it was largely the same as after the first round except that, as expected, her bone-pain was much less. He expressed surprise that her peripheral neuropathy was progressing faster than in 2003 and now included her lips. Overall, however, he concluded again that she was tolerating the regime well.

We had been researching the question of whether Ann should extend her regime from four to six rounds. After consulting with several medical oncologists and engaging a medical librarian on a literature search, we concluded that Dr. Merkel was correct when he told us that there are no clinical trials to assess the relative efficacy or safety of the two regimes. There is no evidence-based medicine to guide her in this choice, only anecdote and conjecture. This leaves Ann with little basis other than intuition for making her decision.

Ann asked Dr. Merkel when he needed to know whether she wants to extend her chemotherapy to six rounds. He responded that he needed only a week’s notice before the fifth round and he recommended waiting to assess the side effects of the fourth round before making any commitments on an extension.

Following our consultation with Dr. Merkel, Ann’s chemotherapy nurse escorted us to a private room for the third round of chemotherapy. We were surprised not to be in the more public infusion room; had our boisterous bevy been noted in Ann’s chart and the powers that be wanted to prevent our cacophonous crowd from disturbing other patients? We will never know.

Soon Carol also joined us for the third round of chemotherapy but, unlike her prior visit, this time she didn’t bring her Scrabble dictionary. As they set up the board, Carol confessed her misgivings from the last game; she wondered aloud whether she should play to win. Is it sporting to play to the best of your own ability while your opponent is mainlining poisonous pharmaceuticals? We all laughed.

The same drugs were infused in the same order to the same effect.

As the drugs dripped, we distributed our delicious doughnuts to delighted recipients. When the doughnuts were gone, so were the drugs.

We went home to rest, again driving north along the lakefront on anther gorgeous day.

The next day Ann was fortunate to have Tori and Nancy, two friends from church, come to our home and give her a Reiki massage. It relaxed her considerably and she enjoyed a long nap afterwards. The massage’s effect lasted several days and Ann attributes her quick recovery to it.

Fourth of July Weekend

A major concern with Ann’s cancer treatment is how it affects Alison. We are very fortunate that friends and family have volunteered to help us. Nello’s parents take care of Alison on chemotherapy Thursdays. Sandy, our friend from church, hosts Alison for a playdate with her granddaughter on the following Fridays. The next 1-2 weeks include a series of play dates hosted by mothers’ of Alison’s classmates from her pre-school, Glencoe Junior Kindergarten (GJK).

The Fourth of July weekend was particularly challenging because it followed Ann’s third chemotherapy so closely. We normally relish Glencoe’s Fourth of July festivities, which include a parade and fair in addition to fireworks. This year we feared that Alison would miss them because Ann would be in such bad shape.

Fortunately, our friends pitched in to help our four year-old enjoy the Fourth. Stephanie and Eric, parents of Alison’s pre-school friend Alexus, kindly took Alison to the fair and parade while we rested; we wanted to save our strength to attend evening fireworks together as a family. We were pleased to enjoy the fireworks at the lakefront home of another of Alison’s pre-school friends, Gavin. Many other GJK families were also there and Alison was soon running with other children in and out of Lake Michigan’s frigid waves lapping the private beach. Alison enjoyed eating her first roasted marshmallow after we made it together in the beach bonfire. Our hosts provided the ingredients for s’mores but Alison preferred to eat her marshmallows and chocolate separately; she showed no interest whatsoever in the graham crackers. After dusk, we settled into a wonderful fireworks display. This was Alison’s first fireworks on the Fourth (though she’d seen a magnificent fireworks display from our apartment window in Beijing on China’s 60th National Day on October 1, 2009). In prior years, the noise frightened her and she didn’t want to see fireworks on the Fourth. This Fourth, we were pleased that Alison was not put off by the noise of the explosions and that she enjoyed the fireworks so much.

We hope you too had an enjoyable Fourth of July.

Summary of Ann’s Side Effects

Ann has tolerated her second and third chemotherapies well. In evaluating how she is doing with her treatment, Ann usually considers four things: energy level, nausea, mouth changes, and neuropathy in fingers and toes.

Regarding energy, Ann diligently follows Dr. Merkel’s recommendation to exercise daily. She alternates her form of exercise between walking and swimming, each of which improves her circulation and prevents drugs from languishing in her extremities. Swimming provides not only the needed aerobic exercise, but also stretches out the tightness remaining in her arms and chest, a side effect from her surgery. We attribute much of Ann’s general well-being between her chemotherapy infusions to her consistent exuberant exercise. Her energy-level falls after a treatment but returns a few days later to a reasonable level, bouncing back to almost normal by the time of the next infusion.

The nausea that many people associate with chemotherapy is present for Ann too. Fortunately, her medications manage it effectively when taken on the recommended schedule. She is also careful to take additional doses of anti-nausea medication whenever she feels any queasiness. “Stay ahead of it” is how one oncology nurse expressed the strategy for keeping nausea at bay. This strategy works well for Ann.

Nevertheless, Ann still has to deal with changes in her mouth that occur with every cycle, namely, dryness and altered taste. She finds that all food and beverages lose their appeal for about 10 days. During this period, she tolerates eating and drinking, dreads mealtimes, and is frequently cranky. (Both Nello and Alison attest to her increased crankiness during this time.) We are all glad when her mouth begins to recover from the ravages of an infusion.

The neuropathy in her fingers and toes carries over and builds from one round to the next. (Peripheral neuropathy is nerve damage that Ann experiences as numbness, pain, or extreme sensitivity.) Neuropathy in her toes makes walking more difficult; in her fingers, it makes small tasks that fine motor control, e.g., buttoning, difficult for her. The progression of her neuropathy is probably what will determine whether Ann will have more than the currently prescribed four rounds of chemotherapy. If her neuropathy is at a reasonable level after her fourth treatment on July 22, then Ann has decided that she will go on and have up to six treatments. Even though hard evidence is lacking for either the efficacy or safety of two additional rounds, she wants to do everything that she can do now to beat this disease and prevent it from returning in the future.

Reaffirming Lessons Learned from Cancer

Ann did not choose to have cancer. However, we have made other choices in cancer’s shadow. First, we choose to fight it. Second, while we fight, we also choose to make the best of our situation.

The funny stories above might lead you to believe that our lives are light-hearted. Make no mistake; nothing could be further from the truth. The reality of cancer, the treatment of the disease and the uncertainties is causes in our future often causes us sorrow and pain. Nevertheless, we choose to see the beauty and happiness in our world.

We are doing our best to enjoy our time together.

We hope you too are finding joy in these summer months.

Take care!

Nello & Ann

Posted by Nello at July 18, 2010 5:35 PM

Comments

1.  

2. On July 19, 2010 9:25 PM, kelley said:

   wow that was beautiful thanks for sharing and kisses and hugs from Iris to Allison.......

   Will be thinking of you this round.... will send photos of Dragon Boat Festival

3. On July 19, 2010 9:37 PM, Chuck & Cathy Ripp said:

   Dear Ann & Nello,
   We continue to remember you in our prayers in this very unwelcome and painful journey, and we are pleased to read about your response to the whole process. It is so good to know that you are trying to make the best of it and keep a light-hearted attitude. Given the seriousness and pain of the illness, it must be difficult to "keep a stiff upper lip. Humor can be a good healer, and certainly is always a means of relief from the process. Keep up you high spirits and we will continue to pray. We love you and wish you the best.
   Love & Prayers,
   Chuck & Cathy

4. On July 19, 2010 9:50 PM, MaryAnn Willard said:

   Wow!! Both of you are doing a remarkable job with facing the challenges. My love goes out to you. Keep up the outstanding work.

5. On July 19, 2010 10:02 PM, Ron and Suzanne Dirsmith said:

   Ann and Nello:
   It is truly a remarkable story that you have chosen to share with your friends and supporters. There is much humor (the chocolate doughnuts) and side comments about the infusion room Lucchesi family antics
   ( our boisterous bevy been noted in Ann’s chart and the powers that be wanted to prevent our cacophonous crowd from disturbing other patients).

   Thank you so much for keeping us in the loop with so much detail. It is an amazing record you are documenting. We wish you the very best and admire your holistic, loving choice to see the beauty and happiness in our world.

   Love to you all.

   Suzanne ad Ron Dirsmith

6. On July 19, 2010 10:37 PM, Holly Kerr said:

   You would have enjoyed eric zorn at church this week- and of course you are missing sorting clothes for the rummage sale. We do miss you and have you always in our thoughts/
   Holly

7. On July 20, 2010 8:06 AM, Kristie Schaefer Gusa said:

   Wow you guys...thanks for sharing your story in such an interesting manner. We are glad to know that you are making the best out of a very difficult journey. It really helps put things into perspective for the rest of us. We know a number of people who are fighting cancer right now. It is a battle beyond belief. Our thoughts and prayers go out to you. Keep up the good work!

   With much love,

   Steve, Kristie, Nicole and Jacob Gusa

8. On July 20, 2010 11:09 AM, Di Zou said:

   Ann - I'm glad you are recovering well. You are a tough Mama. What can I do?

9. On July 20, 2010 11:55 AM, Jeanne Ebersole said:

   Ann and Nello, Thank you for sharing your journey and your description of diligently exercising and eating regardless of how you feel really resonate! I just cannot look at Ensure the same way anymore. I too, had Dr. Merkel as my oncologist and one of the things my husband and I so appreciated was his willingness to talk about what the literature and studies really said and in the end what they didn't say! Although some might feel that treatments were "whistling to keep the elephants away", what really mattered is what you think and what's best for your life and treatment plan. Glad to hear that he's being a great partner with you in this way. All best, Jeanne

10. On July 20, 2010 12:12 PM, Rich and Corinne said:

    Your stength and grace in such hard times is truly an inspiration.
    You guys can beat this.
    Love, Rich and Corinne

11. On July 20, 2010 3:01 PM, Gloria Braman said:

    Dear Ann and Bill,
    You have been in my thoughts and prayers for this very
    long and worrisome journey, imagining the sickness, and
    incredulous at your strength and determination! your sense of the power of humour and the appreciation of what is really beautiful when you look outside of yourselves flows through your diary. Thank you for sharing it with us.
    Love,
    Gloria and Bob
    

12. On July 21, 2010 12:28 AM, Jane Balavender said:

    Ann and Nello, Thank you for keeping me up on what is going on. You are so strong and it sounds like you have a large and wonderful support group. If anyone can beat this, it has to be you. I think of you often and pray we'll heard only good news in the future. Love, Jane

13. On July 21, 2010 8:19 AM, Nancy said:

    Thanks so much for keeping us all updated, and for doing it with such grace and strength. I know you guys are tough, and will do all you can to fight and beat this thing. I'm still praying for you. Big hugs to all three of you from afar.xox Nancy and John

14. On July 21, 2010 5:56 PM, Sarah Henricksen said:

    Thanks for sharing the update. I love the stories! We are looking forward to seeing Alison again soon. Call if you need anything. XOXO Sarah and the rest of the Henricksen Family. :)

15. On July 22, 2010 5:36 AM, Eleanor Sunseri said:

    Once again thank you for sharing your journey - the "fun" tidbits are so enjoyable. Do hang in there, keep fighting, and most of all keep enjoying the beauty of the world around you, it makes you realize why you are fighting! All the best to you both!
    Eleanor

16. On July 22, 2010 7:22 AM, Bob and Debbie Braman said:

    Dear Ann and Nello,

    Your story is an incredible one, and is testament to your strength of character and spirit. We send our best to you as you conquer this illness.

    Love, Bob and Debbie

17. On July 22, 2010 10:08 AM, Margaret Harmeyer said:

    Ann and Bill.........

    Many thanks for the descriptive updates on Ann's chemo and her reactions to it. So glad that it is going fairly well.

    You are all continuously in our thoughts and prayers as we follow this journey with you both.

    You are a wonderful team and will get thru this with the help of docs, family and good friends.

    Our best to you both,
    Love, Margaret and Bud

18. On July 23, 2010 1:05 PM, The Glauberman Family said:

    We are encouraged to hear how well Ann seems to be managing her treatment. We sincerely hope that Nello and Alison are hanging in there too. Please let us know if you need anything, especially as the camp-free month of August sets in! Fondly, the Glauberman Family

19. On July 24, 2010 6:44 AM, Marilyn Rhude said:

    Hello Ann and Nello,

    I have been following along and praying for you and your family. I admire your strength and courage through what must be a truly dreadful experience. Just wanted you to know that your friends out on Cape Cod are thinking of you and praying for a complete and speedy recovery.

    Marilyn Rhude

20. On July 24, 2010 8:50 PM, Dawn Frase said:

    Dear Ann & Nello,
    You are an amazing team! Not only are you facing this challenge with grace and perseverance, but you are also keeping your sense of humor and allowing us the honor of sharing in your journey through these eloquent accounts. Keep up the great work! As one of my doctors said during my brain tumor battles (now almost 20 years ago... hard to believe...), "Dawn, one day this will all seem like a distant dream!" And, he was right! Please know you are in our special thoughts and prayers and... One day this will all seem like a distant dream!

    Carpe Diem,

    Dawn and John Frase

21. On July 29, 2010 8:52 AM, Nancy and Dave Napalo said:

    Much love from us both.
    --Nan and Dave

22. On August 4, 2010 9:31 PM, dorothy sybert said:

    Dear Ann and Nello, My heart goes out to you both: Ann, as you fight this crummy disease, and Nello as her primary caregiver. I'm sure documenting this journey helps. I pray for your complete recovery, Ann, and admire your courage. As a cancer "survivor" (Are we ever survivors?) I can't imagine having to go through the fight again. But...we do what we have to do, unfortunately. You have excellent doctors, and many good friends.

    Love,

    Dorothy

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