Merry, Merry Christmas

OK, this is a really SHORT one, because I’m running out the door, but I wanted you all to know. Fabulous test results yesterday. Believe it or not, my tumors have shrunk 30% overall, which just barely puts me into a category called “partial remission.” I guess when tumors shrink by 30% or more, but are still present, that is considered partial remission. My doctor was very excited, because they rarely see such accelerated progress this early in treatment. He’s convinced I’m getting the PARP inhibitor. Me too.

I believe God has worked through me, my doctors and all of you who are praying for me. I am so grateful and could not have asked for a better Christmas present. Wishing you all a wonderful Christmas – I’ll check back in soon.

Filling in the blanks

Tomorrow is Tuesday, our weekly doctor day. This week we’ll be doing a full battery of tests again, including a CT scan to see if we are holding the cancer at bay, or if it has spread. I’m convinced that the treatment is working already. The subcutaneous lumps I have been developing are getting smaller, so even without actual tests, my doctor and his team are very optimistic. The extensive tests are administered after every two cycles, but as close to the upcoming cycle as they can to give the drugs a chance to do their job. After reviewing the test results the doctor will determine whether or not I will continue on the trial. I’m confident we’ll continue. Because of the short week with Christmas, they wanted us to wait until next week for test results, but John talked them into letting us come back Wednesday for preliminary findings. I think they just wanted to make him shut up! I’ll keep you all in the loop.

When we were in last week, my white blood cell count was pretty low, but not as low as the previous week. After cycle one they dropped way down and we were on the border line as far as staying on schedule for the treatment. I needed a minimum of 101(thousand) to continue and the morning of the treatment I squeaked by with 105. It is normal for the counts to drop after treatment, then slowly rise on their own. So far, mine have behaved admirably.

Thanks for hanging in there with me. I love and count on your continued prayers and well wishes. You’ll hear from me again before Christmas. Love to you all, Shelly

Ding Ding - Round Two!

Whew! I survived the second cycle of chemo and thankfully it went much smoother than the first. First of all, let me just say that I feel GREAT (now)! Round Two was Dec 1 through Dec 7. One of the good things is that I was able to enjoy Thanksgiving and John and I had it up at the house as is our tradition. It was such a treat to be surrounded by family. My sister, Candace, came in from Oregon and stayed with me through the chemo treatment – what a God send.

I was so sick during ‘Round One’ I have to say I wasn’t exactly looking forward to the nausea, although I was anxious to attack the cancer again. And while it wasn’t a complete ‘walk in the park,’ it was so much better this time around. I was still sick but nothing like the previous cycle. The doctors gave me a different anti-nausea pill since the two I tried on the first cycle didn’t work. They also gave me an anti-anxiety pill to take prior to taking the treatment pills. I felt like the “Anti’ pill queen.

So this is how a typical pill taking episode would go: one hour before I was to take my treatment pills I would put an Adivan, my anti-anxiety pill, under my tongue and let it melt. Then I would take an anti-nausea pill, either Reglan or Zofran. I would wait for everything to take hold, then assume the position. This meant going outside in the freezing cold, often with Fandango turned out in the arena next to me to oversee the process and give me strength. Then I would pray while someone would press on the pressure point of the anti-nausea bracelets that adorn my wrists during this special week in my life. When I felt centered, I would take a pill. In the morning this meant 11 pills (7 chemo and 4 PARP inhibitors). I found that taking them one at a time offered the best results. While my sister is a workout guru, she found her weakest body part – her thumbs! Apparently pressing on my wristbands, caused cramping on her part – go figure! At least it added another lighthearted moment to this ritual.

Another interesting thing I found is that after I get through the treatment and the nausea has completely subsided – usually a couple days post pill taking, I have this absolutely unbelievable burst of energy for about two days. I run around like a little energizer bunny, and then things go back to normal. That’s where I am right now, feeling pretty normal. Anyway, more to tell, but I’ll take a break and try to fill in some details shortly.

Love to you all!

Round One

Greetings! OH MY GOODNESS . . . just finished my first round of chemo, and it was a doozy. But first, let me tell you about the clinical trial I'm on.

Each cycle is 28 days. At the beginning of each cycle I go in for a myriad of tests. Initially I had the brain MRI (may not have to do that again). Then they try to drain all of my blood out in the process of doing countless blood tests. I also do an EKG and a CAT scan. If all tests come back OK, which they did, I start the drugs. On days 1 through 5 I take a chemo PILL call tamadar. It is a 'standard of care' chemo treatment. Along with this I take a drug that is a trial drug made by Abbott that is a PARP inhibitor. Apparently a PARP inhibitor is a drug that blocks PARP proteins from performing their roles in repairing damaged cancer cells. The point is to try to make the chemo more effective. Anyway, I take the PARP inhibitors twice a day for days 1 through 7. Then 21 days off - yay!

They told me that most patients have very mild side effects. No hair loss, minimal nausea, some constipation (I know, TMI) and tiredness. I can live with that. Well, I guess I'm not most patients. Even though they gave me anti-nausea medication, it didn't seem to help. It was horrible. We had to get creative to keep the pills down, but I got through it. And I figure, if I'm getting this sick, just imagine how those little cancer cells must be feeling!

So back we went to The Angeles Clinic Tuesday so they could take some more of my blood. Lab results came back great and they have something different for me to try for the next round to combat the nausea. They say 'most patients' have fewer side effects on subsequent rounds. God, please let me be like other people!!!!!

Anyway, that's it for now. I'm feeling much, much better. I just want all of you to know how much all of your thoughts and prayers mean to us. Even though we don't speak to each and every one of you, we know you are out there saying prayers and sending us your love. Your love and support mean the world to us and it is such an important part of my healing. Thanks for all you do!

Monday's Appointment

Monday we went back to The Angeles Clinic in Santa Monica to begin the screening process for the clinical trial. First I did some blood work and a brain MRI. Then lots more blood work and a CAT scan. After that I met with Dr. Hamid who is heading up the clinical trial - what a delightful guy. We went over everything and then he left to check on some of my tests. He reported that after comparing the CAT scan to my previous scans that the cancer had not spread to any new areas. He also said the tumors were not significantly larger and that thankfully they were showing no rapid growth. The brain scan, however, showed a lttle something. About a 1 -2 cm mass, that didn't really look like cancer. The doctor spent a lot of time looking at it from every angle and was '75% sure it wasn't cancer', but he wanted to go over it again with my doctor and said he would get back with us the following day.

I finally got a call on Tuesday saying that what they saw was benign so we're still on track for the clinical trial which I'll start on Tuesday. Here's a link to the clinic http://www.theangelesclinic.com/. Check out the physisians page. Steven O'Day is my doctor. Omid Hamid is heading up the clinical trial I'll be on. I am truly in great hands!

Welcome to the amusement park

This last week has been a bit of a roller coaster. Wednesday and Thursday were doctor days.

Wednesday we met with a doctor from the UCLA group. Great doctor, very knowledgable, but I have to say I felt absolutely overwhelmed when I got out of his office, and even a bit hopeless. Not necessarily his fault - John and I ask him some very loaded questions. I guess I just wasn't ready to hear the answers. We made it through, though, and pulled ourselves together.

Thursday we went to see a team of doctors from the John Wayne Cancer Institute. First we saw Dr. Ray, who is a fellow who works closely with Dr. Morton. We saw him from 8:30 until about 10:00. This guy is a gem. He explained everything and told us we were allowed to forget everything he told us and invited us to call him any time and he would explain it all again. He also stressed two things. First, we must believe in our doctor. He said no matter how good the prognosis, if we didn't believe in and trust our doctor, there was just so much they could do. On the other hand, no matter how poor the prognosis, if we partner with our doctor, there is so much that can be done. He then went on to tell us that it was imperative that we get the order of our treatment right the first time - surgery first followed by systemic treatment, or a systemic treatment first and then surgery if needed.

Then we met with Dr. Morton. There was also a dr. from Japan there who had a machine that could scan moles and ascertain whether or not it is melanoma. They checked one of my moles and it was OK :). Dr. Morton believed that because of my advanced case that I should be treated systemically first and he got us in immediatly to see his colleague Dr. O'Day who works with their sister institution The Angeles Clinic. Look these guys up online - pretty impressive. Dr. O'Day was another incredible individual. He suggested that I was a good candidate for one of their clinical trials which I will describe another day. Anyway, this is the group of doctors we are going with, I'll be doing the clinical trial and I'm very excited about it.

Lots more to tell, but at least this should catch you up a bit. In the morning (Monday) we'll be back in Santa Monica to begin the screening process for the clinical trial. Doing a brain MRI first thing, then a CT scan and lots of blood work. If all goes well I should begin treatment no later than next week. More details later. Love to you all.

My oncologist . . .

You haven't heard from me lately because I've been spending much of my time trying to find the "right" oncologist, which most likely means going outside my HMO network and finding the best person for my situation. It's been a struggle, and I found myself overwhelmed at times. but I feel like I'm on the right path.

Last time I had melanoma, I had an oncologist that worked closely with UCLA. I contacted him and he said he would be happy to take me on as his patient again. But his speciality is NOT melanoma. However, his colleague specializes in melanoma as well as a few other cancers so I'm going to see him this afternoon. But it doesn't stop there.

My good friend Joanne Asman suggeted that I go to USC. She works closely with them since she puts on "Fiesta of the Spanish Horse" which raises awareness and funds for Cancer Research so we may find a cure for cancer. Bless her heart, she called one of the oncologists on my behalf and, after hearing my details, he told her the best place for me would be the John Wayne Cancer Institute in Santa Monica. So I hopped on the internet and started researching the doctors there. I found a Dr. Morton who looked like he would fit the bill. He is Chief of the Melanoma Program. I called his office and and talked to his front office, but didn't make an appointment. While all of this was happening, a friend of John's - Jerry Ash - having heard about what is going on with me, called John and also recommended the John Wayne Cancer Istitute. He asked John to have me call him right away. So I did. It turns out that Jerry was a 3 time National Champion cyclist, he was on the Olympic cycling team and who know what else. Jerry told me he was diagnosed with melanoma about seven years ago and was given just a few months to live. He went to Dr. Morton. After our conversation I jumped back on the phone and made the appointment. I feel like all things are pointing in this direction and it's the place I am meant to be. I will see Dr. Morton tomorrow morning. He seems very thorough, requesting all of my scans, films, reports, blood work and even documentation from my episode in 1999.

As always, I am hopeful. I ask for your prayers and healing thoughts. I know it will make a difference.

Diagnosis

This morning I had my biopsy. It came as no surprise that they simply confirmed what we already suspected. Inoperable, incurrable melanoma. That, however, doesn't lessen my resolve nor the effort I am committed to putting into my recovery.

OK, good news. They were able to get the biopsy from the lump on my chest and didn't have to go into my lungs - yay! And another bit of good news is that after the nurse already put in my IV, my anesthesiologist got practice putting in an "A" line that I didn't need and he wasn't able to complete. Thanks goodness the surgeon arrived in time to stop him and the mission was aborted - yay again!

So tomorrow I start a dialogue with a couple different oncologists, one from UCLA and another from USC. Monday I go back to the surgeon to have him check out my incision and get a copy of all lab reports. Busy, busy busy.

I love all of you and so appreciate all your support. You are my strength.

Waiting and reading and drinking wheatgrass

My days seem to be filled with new kinds of activities. Besides praying more, one of my new passtimes is drinking wheatgrass - yum! Actually it tastes pretty good. I'm also spending a lot of time reading, listening to tapes, visualizing - and praying some more. My spirits are high and I believe with every fiber of my being that I will beat this. Oh yeah, waiting is another fun activity. Waiting for the test results. Waiting for the next dr.'s appt. Waiting for my referral.

Wednesday I'll have my biopsy done. With any luck they'll be able to get a sample from the lump on my breastbone. If not, then they'll make a small incision below my throat and grab something from inside my chest. Doc said he could actually look inside my lungs if they do that. Lucky him. Of course, I'm hoping for the former. The dr. seems to think they will have an immediate diagnosis after surgery. However, we may not know until Thursday. Either way, check in for an update.

How it all started again

OK, so your first question is, what's up with the name. Well, I'll get to that. But let me first tell you the reason for the blog. I was recently diagnosed with cancer - again. I had melanoma about 10 years ago and it has raised its ugly head again. So I thought a blog might be a way of keeping everyone informed about what's going on with me. Here's the timeline:

Sept 10 - Routine exam, chest xrays ordered along with lots of blood work and other tests. Doc says come back in a month and we'll go over test results.

Sept 30 - Found a lump on my breat bone that night and coincidentally I had had a very sore neck for several days so I thought this was suspicious and decided to make an appt with my dr. instead of waiting for the scheduled visit - I got in the next day.

Oct 1 - Thursday. Dr checked out 3 lumps I showed him , then we went over the xrays. The chest xray indicated a mass. My Dr. ordered a CT scan for me the next day which was a Friday.

Oct 2 - Friday. CT scan at 2 PM. Went to Dr. afterward for a verbal report. They said it was inoperable cancer that had gone to the lymph nodes. Dr. made an appt for me with a surgeon, Dr. Yusef, for Monday to get a biopsy done.

Oct 5 - Monday. John's birthday. Went to see the surgeon, but he wanted a PET scan done before performing the biopsy. Said he thought it was melanoma. He told us "Beware the man with the glass eye and the large liver." Well, we looked at him with blank stares. Then he told us a it was a saying within medical circles indicating the sneaky nature of melanoma. "A person may have melanoma of the eye and have it removed and get a glas eye, and then get melanoma of the liver." I have to say we still had blank looks on our faces. Anyway, Beware the man . . .

Oct 6 - Tuesday. PET scan. Now that's a an interesting test. Shot me up with radioactive sugar and let me sit for 45 minutes so my tumors would have time to attract the morsels. Then I was put into the scanner twice - once for the top of me and once for the lower half. Then I broke the machine (software error, geez). Radiologist was finally able to read the scans.

Oct 9 - Friday. John and my 19th wedding anniversary. Appt at 6 PM with surgeon to go over PET scans and talk about biopsy surgery scheduled for Wed, Oct 14. We felt very good about the appt and our dr. Then we went to Le Chene (John in shorts, me in jeans) for a very romantic dinner. Truly, it was wonderful and a wonderful way to end our crazy week.