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

It's starting to sink in

With the diagnostics completed, I now know that I have Stage IIIA Non-Hodgkin's Large B-Cell Lymphoma. Of course, I’m still getting used to the news.

Sometimes I find myself just kind of “watching” as if the process is happening to someone else. For example, I’ll think about how amazing it is that scientists have developed all of these sophisticated nuclear imaging techniques to see how things are working on the inside of our bodies without having to cut us open to take a look.

Then I jump back into the personal sphere and realize that because of these scientists, I know where the cancer is in me. The PET Scan makes all the cancer cells "light-up" so that you can see the location of the disease. In my case the lymphoma is both above and below the diaphragm. The PET Scan will be a helpful test to repeat at some point later in my treatment to see how things are going.

Thursday I met with Dr. Friedberg and the first thing I noticed was that he had the permission slip for the clinical trail on the top of my file. I had a moment of panic thinking that it must mean I had Stage IV disease—somehow I had gotten confused and thought you had to be at Stage IV to qualify for the study. He asked me how I was doing and I said, "Maybe not that great given that those papers are on top of the file.” He said, “Let’s slow down and we’ll review everything.”

There was actually very good news to report. My heart test came out perfectly. I also had no cancer in my bone marrow. My LDH blood test is higher than normal—but only moderately so—which is one indicator of disease (1 point). There was evidence of the cancer both above and below my diaphragm (1 point). That means I have only two of the 5 possible points that are cause of concern in determining the prognosis of the disease. I luck out because I haven’t hit the big 60 YET! I also didn’t have any other symptoms—like night sweating or unexplained weight loss. All the pounds that have left this body were hard earned! Finally my performance status is excellent—or at least normal for me ☺.

I admit that I was really anxious about the staging. I knew it was out of my control, but I was still dreading the report. Dr. Friedberg explained that I have Stage III disease and that is considered advanced and qualifies me for the clinical trial which will be the same exact treatment of eight courses of chemotherapy—administered every three weeks, followed by another drug called Bexxar® which is a form of radioimmunotherapy. Now that I realize I had a misunderstanding about qualifying, I’m actually relieved that I’ll be able to participate because I think it will really boost my chances for a full cure.

If you want to know more about Staging you can check out this web site:

http://www.leukemia-lymphoma.org/attachments/National/br_1161891669.pdf

So after talking with Dr. Friedberg, my nurse, Lynn prepped me for the chemotherapy I was going to start. I’m getting the R-CHOP protocol. I go to the Wilmot Center for one day every three weeks and get four of the drugs infused through an IV—Rituximab, cyclophosphamide, hydroxydaunomycin, Oncovin®(vincristine). I then take five days of prednisone pills. Lynn described the possible side effects of the chemotherapy. We then had a LONG talk about POOP! Yes, one of the things that is really important is not to get constipated from the treatment. So I’ll be paying a lot more attention to that particular body function!

The actually infusion went very well. I went into a room and got to pick my chair. 
A treatment nurse, Chris, hooked up my IV—ouch!  They slowly start adding the Rituximab in the IV. Fortunately, I tolerated it very well and didn’t experience any of the possible side effects. It takes about five hours to infuse this drug the first time—they do it really slowly in case you have a reaction.

Julie was with me most of the day—such a blessing to have her constant support. We had brought a nice lunch. I was really glad we had brought our own when I saw the options on the lunch cart they rolled by.

I had some nice visitors--Jessica Spector was in to meet with her doctor and stopped by with her Mom, Paula Brown.  Dr. LaLa stopped by to entertain me too!

After the Rituximab was finished, they slowly pushed syringes of two other drugs and hung a third on the pole of the IV. At almost 7:00 p.m. I got my “get out of jail” card and got to go home.

All in all it wasn’t too bad. Getting home I had a slight headache. I ate dinner and took the required medicines. I had a pretty rough night—hard to sleep. My body felt like it was buzzing. I finally took some meds to help with nausea and anxiety and got through the night.

The rest of the weekend was pretty good. One of the medicines seems to kick my ass into high gear. At one point I was dancing a jig in the kitchen before I harnessed the Prednisone induced energy and went for a long walk up to Cobb’s Hill and around the reservoir. It was a really beautiful weekend and I'm appreciative of the beautiful weather, the coming of Spring, and all the blessings--in spite of this crappy lymphoma.

I balanced the weekend between being busy attending a bridal shower, Passover Seder, and dinner with the Pelz family and taking some good rest periods. There is a certain amount of physical discomfort, but so far it’s been manageable.

I’m trying to focus on not getting too far ahead of myself. The emotions seem to take over when I think about the next six or seven months--it just feels overwhelming. When that anxiety is raging, I focus on just breathing in and breathing out. I’m working to stay in the moment.