Down to the Wire

Hi Blog Readers--Julie here, stepping in for Ellie. Why? Because her (Jewish) guilt at not keeping up the blog lately due to an energy slump is adding to her anxiety. So I am the designated blogger for now. By the time you read this entry, Ellie will have edited it, so please be assured it has her stamp of approval. For those of you that don't know me: I am Ellie's housemate and BFF. For those of you who have asked for more regular updates on my own chemo treatments for b.c., I have included your name/e-address to Ellie's distribution list and am adding an update on me at the end of this post.

As mentioned above, the reason you get me rather than the Elster is because now, as she approaches the 8th and FINAL chemo treatment, her energy level is at an all time low. Zip. Nada. This is to be expected and in fact Dr. Wonderful has warned and warned Ellie to anticipate it. I say, it just means the treatment is on course and that the end of this phase is so near.

Ellie will have her next/last treatment on Thursday, September 11. Followed, as usual, by five unpleasant days due to massive Prednisone doses that serve as an adjunct to her chemo. Although on day 5 I plan to do a dance around the breakfast table after she swallows the last tabs, it's probably several days later that Ellie will start to feel signs that signal the start of her gradual physical recovery. I do anticipate that mental and emotional relief will start to kick in with a huge bounce on day 6 in the direction of starting to feel good again.

Ellie has done extremely well during this trying time. She has worked out with a trainer twice a week since last summer, and never quit during her treatment. This is just so remarkable and must have had a major impact on her great management of chemo. It has also been a daily goal to walk at least a mile route around our wonderful neighborhood (this summer was just so lush and green--beautiful) so little dog Shelby has not missed her exercise. In fact, neighbor and friend Trisha has also adopted Shel for pet walks, so on a good day, Shelby can get three long walks in--with Trish, Ellie and moi.

Ellie has maintained a working schedule as well, while abbreviated which has been tough for her to swallow given the bustle of the normal fall classes and activities. My view? She should just take a g.d. week (preferably two) OFF. But she decides, and does that on a daily basis, and of course I respect her right to do so.

Ellie's hair is starting to grow back in--you can see the subtle changes already. Eyebrows that disappeared late in the treatment are also beginning to take shape again.

We have watched tons of DVDs throughout the summer and are currently wild about "Mad Men"-- the complete season 1 is at Blockbusters and now season 2 is starting on TV. We've moved on to "The Tudors" as well and recommend that, too.

You can't get through something like this without all the emotions. The support of all Ellie's friends and family has been the most generous outpouring, and we both so appreciate it. Lately the strain has increased, though, and thanks to our friend Kathy, I learned about the EFT (that stands for emotional freedom technique--google it to learn more!) method of tapping on accupressure points in the body to manage overwhelming feelings. How did this help Ellie? When I demonstrated the process, which involves lightly tapping your face, collarbone, hands, rolling your eyes around and humming a tune, she had the biggest belly laugh I've seen in months, followed by huge farts. This turned crying into laughter. So I guess it did work, huh?

In spite of lymphoma, and the roots that have been growing out of Ellie's ass into the recliner where she sits and knits the most beautiful afghan for Adam and Lindsay' second baby due in December, we have had a good summer. Each of Ellie's sisters visited. Carol brought oldest daughter Case Western junior Allie on her early August trip, and we also had a chance to see all three of Carol's girls on a quick trip to Buffalo for dinner one night as they were driving thru after picking up youngest daughter Emily from a Canadian camp. Nancy came over Labor Day weekend, bearing beautiful potted roses and orchids, and cooked us up fish in a revolutionary way (high heat with veggies) that even I will be able to emulate. The peach pie she whipped up, however, is strictly a Nancy creation and was delectable.

Although Ellie said "Bah" to her 56th birthday on August 24th--chemo side effects had been especially troublesome around then--the Pelz family, Myra, Jeff, Rachel and Maddie, saved the day by coming over with a small chocolate cake--mercifully with only one candle. Totally thoughtful, it really lifted Ellie's spirits in spite of her earlier birthday ban. Myra will accompany Ellie to her final chemo treatment (Ellie comments: "Just to make sure I go and do not skip town".)

So what does the future hold? Well, we’re not quite out of the woods yet because Ellie signed up for a clinical trial for a promising drug treatment. Starting at the end of October, she will receive Bexxar, which is designed to clean up any lingering lymphoma cells and should improve the outcome of the chemo. This will involve two infusions, a variety of scans, radioactive drugs, and 12 weekly blood draws. Then she's really done.

JB Update:I have just completed "big blast" no. 3 of 6 chemo treatments. This occurs every three weeks. In the interim, I go weekly for "little blasts." Big blasts will end on November 11. Little blasts will go on until July '09 with 6 weeks of daily radiation during that period, thrown in for good measure. My experience of chemo has certainly had its ups and downs, but thanks to great medical management coaching by Anne Da Silva Tella, I tell my doctor and her team every symptom I have, no matter how small, so that if there is anything I can do to ease the situation I get the advice.

This week brings a round of doctor appts as I approach the 12th week post surgery. I shall expect great reports as I believe I have healed very well. I also think this is the week I get permission to get back to lifting weights at the gym, which I sorely need to do. My ass is also growing roots into the couch (directly adjacent to the recliner.)
I also have cut back on my work schedule, but am delighted to be building back up as my stamina increases. My workplace peeps have been incredibly supportive, just adding to my list of things, make that people, to be grateful for. The cards, flowers, letters, e-mails and treats have been just one sweet surprise after another--Ellie and I are so blessed to have our individual and joint circles of families and friends.

After being told my hair would fall out by day 14 of chemo, I had Sherry, the fabulous wig stylist (alternativehair.com) cut off all my hair (she did not shave my head, just cut to the scalp) in anticipation. But here I am--definitely losing strands, but most of it is hanging in there--and growing. I was sure that if anyone was to lose their hair immediately, it would be me with my already fine and thinning (thank you aging) hair. Now I have a new respect for the tenacity of my hair--and got the lesson that what may look fragile on the outside can contain massive strength invisible to the eye.

So that's it from the cancer house for now! Thanks for reading, and for all your thoughts and prayers.
Julie

Hanging In!

Wow! It’s been ROUGH and TOUGH lately. I’ve been dragging! My energy just isn’t there, and I’ve had some trouble sleeping so that complicates the next day. I did the last Rituxan dance at my infusion on Thursday (the “R” in "CHOP-R”). I have two more rounds of just the CHOP. Wish that “P” didn’t stand for Prednisone! It’s a relief that I’m seeing a glimmer of light at the end of this chemo tunnel. After that, I will finish up with the Bexar treatment, as part of a clinical trial, in a couple of months.

Meanwhile, Julie’s first round of chemo was pretty awful. They had technical difficulties getting the first treatment underway and then she experienced side effects that were unusual. Afterwards, she suffered terribly from wicked nausea and some vomiting and ended up glued to the couch for a few days. Things are looking better for her now and she has been able to return to work.

To distract ourselves, Julie and I are constantly reading, Julie is knitting (and keeps screwing up so I have to fix it), and we have a perpetual DVD going from Blockbuster (we’re on the fast track checkout plan). Now that we’ve seen everything in the store, the clerks—[you know how you usually just ignore them? Well, we are on a first-name basis with them!] and we press for new movie recommendations constantly. The last straw was some depressing morality tale by Woody Allen. I’ve put my foot down and now Julie and all Blockbuster clerks are on notice that movies can only be upbeat and happy. Thank God Clare recommended “Connie and Carla” with the actress that did “My Big Fat Greek Wedding.” Check it out (we’re done with it).

Julie’s friend Cathy Lewis gave her, and now I am recommending to you, the book “Three Cups of Tea”. It is a very unusual and inspirational story about how one person with vision, passion, and commitment changed themselves and the course of other people’s lives. Author Mortenson, a Minnesotan, built 55 schools in the remote mountatains of war-torn Pakistan—beginning as the Taliban was just forming. Reading it during this time was good for me as it forced me to think about this bigger picture rather than only seeing things through the cancer lens. Further, I found myself delighted when Mary Pat remarked to me that four years after her cancer treatment, she doesn’t remember any specific things…like names of certain drugs, blood counts, etc. I look forward to that kind of forgetting.

Arf! Arf! Shelby, our sweet Schnauzer, is barking out a thank you to our good friend and neighbor, Tricia, for all the great walkies she’s been enjoying.


Take good care,

Ellie

On the eve of dual chemo week #1

Clayton Lehmann--Our favorite "almost" ring bearer!

I hope this message finds you doing well. Many thanks for your prayers and good thoughts. I’ve been trying to go about life while relegating “dealing with cancer” to a subscript of the day-to-day. Most days that’s been a pretty good approach. Then there are the moments when the effects of treatment scream “DON’T YOU DARE IGNORE ME!” In those moments, I hang on tight and ride the wave—of nausea, exhaustion, or both--and then it passes. And then its a new day.

Julie says that my driving has gotten worse as my treatment has progressed. So while I’m feeling pretty stable, I guess my anger and aggression are being expressed through driving like Mario Andretti and way exceeding the speed limit! I’m going to try and slow down and use this blog to express myself more regularly—perhaps that will help me avoid a speeding ticket!

But I’ve also been anxious about Julie—funny (as in funny/strange), but dealing with my lymphoma has bothered me less than my ruminations about what Julie has already endured with major (and minor) surgery, and what she will face through very intensive chemotherapy treatment. Odd, because while I know we have absolutely no control of the outcome for either of us, I’m confident that we will both be fine—no matter what the outcome. I do find some solace in that notion.

Meanwhile, I am working to change my overall approach to life-on-earth management. Specifically: on relieving myself of believing I need to (try to) control everything. As a self-confessed control freak, I have spent a lot of energy trying to manipulate—situations, other people, and myself—in pursuit of certain results. Normally my motives are good—even “pure” ☺—as I know that I want what I think will be best for most or all of the people, animals plants and/or environment involved. I’ve often been very successful. However, during a recent retail therapy session in one of my favorite haunts, Marshalls, I saw this little plaque that read “I’m not bossy, my ideas are just better than everyone else’s.” I almost bought it, but thought better of it as I felt my ego sting from the truth the plaque reflected.

I now see this trying to control things approach can actually end up as a big character defect. I think one of the lessons I’m learning is that MOST of everything is unmanageable and out of my control. I know I need to do my part, even when I don’t want to, like show up for chemo appointments, sit in the infusion room chair, take the IV poke (yuck!) These tasks are my responsibility. But worrying about how things will turn out for me, or for Julie, is really just a waste of my energy, energy that now seems more precious to me than ever. Energy I really need to conserve, now that the treatments are zapping some of my strength.

So that’s my rambling for today. We are moving along. I’ll go for round #6 on Thursday. Julie has recovered remarkably well from her June surgery, and also had a medical port inserted last Wednesday that will be used in lieu of a fresh IV stick each time. This will make her weekly chemo treatment more tolerable and she’ll begin her year in treatment on Monday.

Is there life beyond cancer treatment? Absolutely. We are both grateful for the good times with friends and family. On July 12, we felt blessed to be able to share in the celebration of (Julie’s nephew) Taylor and Caron’s wedding! Not only did we attend, both of us hit the dance floor. It was a beautiful ceremony, great reception and a lovely weekend at the Esperanza Mansion at the tip of Keuka Lake. We have friends who double as fabulous cooks and have insisted on preparing terrific dinners, many of which we have enjoyed outdoors during this spectacular Northeast summer weather. A visit this week from our friend Macke from Stanford CA was a special treat.

Till next time!

Halfway Home!

Having just finished the last of the Prednisone for round four, it's now official—chemotherapy is half over and most of my lymphoma has been moved to the curb. Four more rounds to go!

Julie is now two weeks out from her successful surgery and is doing well! She is amazing and so is her loving care network. Thanks so much for all the calls, cards, visits, flowers, and of course all the yummy meals. In addition to feeding us so well, you are nurturing our hearts and minds.

I have had some yucky moments thinking about what we have to deal with as we go forward. What can I say—I am ANGRY! While I know that question of "why" this is happening is pointless, it still annoys the hell out of me that we are BOTH dealing with cancer at the same time. When I'm overtaken during those soul-grabbing times, my crabbiness and tears flourish. The good news is that so far there is also a sense of cleansing that comes from the process--in a way it "cleans out my system" and seems to get me ready to go forward.
I do trust that we will get through all of this—with your love and support--day-by-day

Three down!

Sorry for being MIA lately in the blog-o-sphere.  Life has been hectic, and I think I've just been hunkered down in coping with the day-to-day while gearing up for Julie's surgery coming up this week.

Overall, I'm feeling well.  I've completed the third round of chemotherapy with little discomfort of inconvenience. I do have more fatigue, and right now my blood counts must be on the low side as I have a mild sore throat and swollen glands. I'm applying aggressive rest as my therapeutic intervention of choice--read MANY NAPS!

We had an absolutely fabulous time attending my niece Emily's Bat Mitzvah in Cleveland in May.  She was FANTASTIC!  I was so impressed by her ability to lead the service, read from the Torah and bring meaning to her portion during her talk. Emmers was poised throughout, brought her own touch of humor to the event, and looked smashing!  The service project she selected, preparing and taking gift baskets to mothers of premie babies, was particularly meaningful, and indicated to me the depth of her character and the size of her heart.  With the love and support of older sisters, Allie and Leah, she really shone.

Parents, Carol and Michael, put together a wonderful weekend--so special to have our whole family together.  Seeing my nephew Evan from California looking great and definitely very LA suave was a delight. Niece Jenna is terrific, and it's obvious that NYC and her work at the MOMA are keeping her in good spirits.  It was great to be with Mom and Dad who at 85 and 86 sure are role models for how to live life to the fullest--they are an amazing couple.  It was wonderful to have our Detroit family join in the festivities.  While I didn't get to spend enough time with them, it really made it special to have them with us.  Nancy and Will gave a yummy brunch, and it was great to end the weekend snuggling with all my nieces in the beautiful setting of their home.

Graduation at RIT was the next highlight.  It is always a bit bittersweet to see students I've worked with over the years turn ready to take the next step, and hard to imagine not having them in my daily life as they begin their next adventures.  I was particularly thrilled to celebrate with Pawee and his family and friends from Thailand the great accomplishment of his graduation.

Julie has spent the past month putting together her medical team. After an initial false start with a surgical consult, she has selected doctors we both feel very comfortable with.  She will have surgery on Wednesday, June 11th.  I'm grateful that her nephew Zachary is coming to be with us and along with her sister Jane will be able to be my "representatives" at the hospital.  I'm not supposed to be exposed to the germs there while my own immune system is weakened by the chemotherapy.  Julie will be in the hospital 3 or 4 days and then home to recover for four to six weeks.  Then it looks like we will both be sitting in chemotherapy infusion rooms while we get rid of any lingering nasty cancer cells.

I do want to express my gratitude and appreciation for all the support that you've shared with both Julie and me.  We are so fortunate to have such loving family and friends surrounding us during this trying time.    When I told my doctor about Julie's diagnosis, he remarked that he knew we'd both be okay--but that this would be a "really crummy year."  I so appreciated his honesty and understanding about how this is really a challenge and when I think of what it would be like to face this alone, I just have to thank all again for all the support and blessings you've bestowed on us.

I'll keep you posted on how things are going.  I'm not making any promises about the frequency of my postings, but if you want me to send an email alert that there is a new posting, drop me a  message at EDRDHD@RIT.EDU.

Take good care,

Ellie

Hair Goes Chemo #2

Dr. Friedberg said not to worry last week when I told him that my hair hurt when my head touched the pillow--it wouldn’t hurt for long. He was so right! It was the follicles hanging on for dear life. By Friday they had “given up.” As I got into the shower that morning, my hair was coming out in clumps.

On Saturday, I had my appointment for a wig. Sherry at Alternative Hair is fabulous! I thought she would shave my head, but instead she suggested just cutting it really short—that way as the rest fell out, it would bend and not poke me. The next step was trying on the wig. It looked pretty “wiggy” until Sherry worked her magic, trimming it to fit my look.

Thursday, May 8, 2008 began my second round of chemotherapy. Myra, caregiver extraordinaire, accompanied me and made a yummy “post-chemo” dinner. We met with Dr. Friedberg and Lynn Rich. Both were pleased

with how well I had done with round one and asked about how Julie was doing. After Dr. Friedberg examined me, Lynn explained my blood counts and confirmed that everything looked good to go. The infusion rooms were crowded, and my nurse was having an “off-day” so getting the IV inserted was four “sticks” later. Myra did a great job of keeping me distracted through all the poking! The infusion itself went smoothly and much more quickly than the first round. Thanks to Gail Hyde, I was super comfy in my warm and soft shawl. I enjoyed visits from Vicki and Sue. To break up the infusion boredom, I shared the Hair and No-hair look!

Julie is on the trail of selecting her medical team. It’s unnerving to have to figure out surgeons, oncologists, possible radiologists. We got some help from a terrific organization called the Breast Cancer Coalition of Rochester. One of Julie’s good friends, Anne, who has experienced breast cancer twice personally, is guiding us through the process.

I’m still in a state that feels like suspended animation about Julie and I both having cancer at the same time. It’s difficult to anticipate how we’re going to handle this, but I can’t really focus on the future. I’m working on staying in the present. I am focusing on the moments we have and what blessings are gracing me. One day at a time is now more than a spiritual guide – it’s become a blueprint for living through all this chaos.

Unbelievable

Well just when I thought it was safe to go back in the water . . . the cancer shark was taking a BIG bite out of my household's ass--Julie found a lump in her breast and the biopsy done last Thursday was positive for cancer.  I find it incomprehensible that we could both be feeling so well and dealing with cancer.  

The weekend passed without the test results, although I think we were both fairly certain that the news was not going to be good given what the radiologist said after the first mammogram. My emotions are all over the place.  I've had moments of wrenching sobs, alligator tears, and then a solid resolve that we are in this together and that we will deal with whatever comes.

We will wait for further direction from doctors and do the required research to get to the best care possible.  I have this image of our house having a HUGE red star on it in the cancer surveys--what happened to Passover?????

My own journey seems to be at a good place.  I am grateful to be off the Prednisone for the rest of this round.  That drug is wicked--although I'm sure it does a good job of helping my body cope with the chemotherapy.  I had good energy during the weekend and appreciated the wonderful weather and a great walk.

Julie and I went to the "Wig Lady" and it has now been officially confirmed--I have a BIG head!  I know most of you were thinking it was just my EGO.  Anyway, the wig options are a bit limited by the size of my head and the choices of color, etc.  The wig lady ordered some for me to try next week and we will see what works.  With the news of Julie's situation, the superficiality of wigs and such stuff really seems so inconsequential--but then again, my hair hasn't started to fall our yet.  I guess I can expect that sometime in the next week or two.

So what's my message today?  Enjoy the moments and cherish each other.  Please keep us in your thoughts and prayers.

Take care,

Ellie