WOW! The wonderful people I work with had a SURPRISE "Kicked it to the Curb" party for me yesterday. I can't believe how oblivious I was to all the activity! Typing away at my computer the office elves prepared a scrumptious spread. Of course I was in tears--tears of JOY! The highlight of the party was an artfully made cake--a "Kickin' It" shoebox and chocolate high heels! Mary Jane outdid herself!

My gratitude goes to all for your fabulous support throughout my illness. I'm so blessed to have you all in my life.

With love,

Ellie

FAB News!

Greetings,

I just returned from the doctor's office and I am thrilled to report that the biopsy from last week was benign--YEA! YEA! YEA!

I am absolutely ecstatic about this "best possible outcome" according to Dr. Wonderful (a.k.a. Jonathan Friedberg.) The blessing of all of this is that I don't have to face any more lymphoma treatment--at least for now. The spot that has shown up on the CT and PET scan will be examined again in three months just to make sure there's no funny business.

The last ten days waiting for the biopsy results have been pure hell--but at the same time, I have had a sense of knowing that I would be okay, no matter what. Even so, I was still very anxious and upset. The lesson in this for me continues to be that I can only do my part--I can't control the world or, in this case, the biopsy results. I'm so grateful for all the support and prayers that have made this cancer trip a manageable journey.

Its said that cancer changes you. From my vantage point right now, I must say that feels true. I am different and, in some fundamental way, I think, richer--not to say that I wouldn't have picked the shorter line at Wegmans' in a heart beat!

Take care,

Ellie

Kicked it to the sidewalk!

I wanted to let you know that I saw the doctor yesterday and unfortunately there is still a spot that is concerning. It's amazing because all the other areas responded very well to the treatment and there is only this one obstinate growth that showed up on the recent CT and PET scans. I'll have a core needle biopsy next week to determine exactly what is going on. There is a small chance that it isn't lymphoma so I need the test to figure things out. Once I know more I’ll work with Dr. Friedberg on next steps. He was still positive and said that there were things that can be done so that's the good news.

As you can imagine, I am extremely ticked! I was so ready to be done with this lymphoma stuff. It's ironic because I was just telling Julie the other night that I was really feeling "back on my game" with my energy and concentration returning to pre-treatment levels.

Julie is looking down the barrel of her last week of radiation—YEA! At this point her skin is burned and raw in some places so it's pretty uncomfortable. She's also dealing with lymphedema--swelling of the arm and is getting treatment for it that includes bandaging the arm daily and a special massage technique to redirect the fluids that build up in the arm. Pretty yucky stuff, but she is hanging tough.

Thanks to all of you for your prayers and support. It means a great deal to me and Julie. We’re not out of cancer jail yet, but hopefully we will be soon. I'll be in touch when I know more.

Take care,

Thanks Giving

When I think of what I'm thankful for this year I'm surprised that eyebrows are on my list. Yes,they are back! Along with a cute little buzz-cut fringe of hair on my head that lets me know that the chemo is over and I'm getting back to normal.

I'm feeling much better. My energy is returning. I tolerated the last Bexxar treatment very well. Dr. Friedberg is pleased that I've responded so well and things are looking good. I'll have a PET scan in January to confirm that everything is clear.

Julie is also making progress with her treatment. Her last "Big Blast" of chemo a couple of weeks ago really kicked her butt. Hopefully it also kicked the butt of any
lingering cancer cells. She's starting to feel better and will begin 6.5 weeks of radiation the first of December. All this cancer stuff certainly was put aside as we celebrated the birth of Julie's great niece, Rowan! She's beautiful and we are thrilled that Lindsay is feeling well and that the whole Lehmann family is doing the happy baby girl dance with us.

I'm really grateful for all the blessings in my life. The support of family and friends has certainly helped me make it through this lymphnoma journey. Wishing you all the best during this holiday season.

Feeling better . . . bit by bit!

It’s wonderful to now be over three plus weeks away from my eighth & final chemo treatment. I think I experienced an almost instant psychological lift just knowing that I didn’t have to have to ingest any more Prednisone!

However, I still feel like I’m on a physical and emotional rollercoaster. It’s great to be off all the pills. My hair is trying to grow back and these little weird (and painful) bumps appear as the follicles are “unplugging.” Each one only lasts a day or so, but it’s like when you have a mole digging in your yard—as soon as one goes away, another one crops up.

And, as much as I’d like to be, I’m still not “done” yet– I will begin participation in a clinical trial for a follow-up drug therapy at the end of October that will involve administration of the drug Bexxar followed by weekly blood tests for 12 weeks...so I don’t feel like I’m out of “Cancer Jail” yet –although maybe just visiting now...

I’ve been able to be spend more time at work, and that feels good. Although I’m not back to my old schedule, it is nice to be gaining my strength back. I keep thinking that I’ll walk across campus and go to the Student Life Center for a workout, but in truth I’ve taken a “gym vacation” the last few weeks. I have still been getting out most days for a walk. I sent an S.O.S. to my trainer and have an appointment scheduled on Wednesday.

I think one of the things contributing to my energy “recharge” is that I started getting some Reiki treatments from a talented woman, Sheryl Infantino, at the Retreat House (http://www.retreathousemassage.com). Reiki is a form of energy work that I hope will improve my overall wellbeing. I’m also hoping it will help restore some feeling in my toes—the last three toes of each foot have kind of “numbed out.” Please send me positive energy to boost this part of my recovery!

I was really pleased to be able to drive to Cleveland to celebrate Rosh Hashanah with my family. I became very emotional when sitting in the sanctuary—it’s been a spiritual haven for me since I was a little girl. Having cancer has changed my perspective. I’m more appreciative of the blessings of family—even when that can be bittersweet as I experience the increasing fragility of my parents, aged 87 and 88.

My housemate, Julie, is more than half-way done with her chemo treatments and was very tuckered out last week. (She gets a “big-blast” treatment every three weeks and “mini-treatments” of just one drug in the intervening weeks.) She also has been getting additional therapy the first two weeks of her cycle to bring her white blood count levels up—unfortunately, these shots have some yucky side effects. I’m relieved that I’m going to be feeling better as she is now dealing with the cumulative fatigue that comes with each additional treatment.

Today Julie and I participated the Making Strides Against Breast Cancer walk. While I was impressed with the magnitude of the event, I also found myself really pissed off that we were there as cancer survivors! I was actually surprised by the level of my emotions—my crabbiness as we were getting ready to go should have been hint. I’m sure the mini-melt down was another part of the healing, but dang. . . I just wish this all would go away!

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