Diagnosis and treatment

My last blog post was so, so bleak. I was in such a horrible place when I wrote it, and I feel like a completely different person today. It’s 12:09 a.m. on Friday morning, I just forced myself to stop working, and the adrenaline from today is literally coursing through me. I don’t think I’ll be able to get to bed, the past 48 hours have been intense.

But here’s a quick update.

I was finally diagnosed on Tuesday morning. I have Diffuse Large B-Cell Lymphoma (DLBCL) which is a very aggressive form of lymphoma. I don’t want to talk about staging or percentages because I’ve never been a numbers person so why start now. My oncologist is no longer my oncologist because I have blood cancer, so I will now be treated by an onco-hematologist. I can’t even express how much Dr. Segal and Dr. Wygoda at Shaare Tzedek hospital have helped me through this entire difficult process. I am very grateful for their care and concern.

Now the real battle begins.

My husband managed to get me an appointment with Dr. Moshe Gatt at Hadassah Ein Karem on Tuesday at 4:00 p.m. It was a Sharap appointment so we had to pay out of pocket, but I needed to see a hematologist ASAP so I could understand more about my cancer and my prognosis. He came highly recommended so we jumped at the opportunity to meet with him. We had to scramble to get people to take the kids and do pick up and stay with them, but we were thank g-d able to manage. Gaby’s Aunt Della joined us for the meeting.

Dr. Gatt was amazing. He explained what I’m facing, looked at all of my test results and my blood tests and then said what everyone else has told me. It was a miracle that I decided to go for gastric bypass surgery because I am asymptomatic and yet I have a very advanced form of cancer. He outlined the treatment plan which basically consists of 6-8 rounds of a chemo called R-Chop. So, every three weeks, I will need to come to the hospital and get hooked up to a drip of Chemo and them hopefully I get to go home and deal with the side effects.

They are going to essentially wipe out my entire immune system and the cancer cells and hopefully, after treatment is completed, I will be cancer free.

He did recommend that I have a bone marrow biopsy, to rule out a couple of potential issues, but Chemo needs to start right away because of the advanced stages of the cancer and its aggressive nature.

But, all the hematologists are leaving the Country to go their annual convention in Atlanta and Dr. Gatt won’t be back until December 14th. So, I can’t start chemo until December 17th.

We told him that I was also considering to continue my treatment at Shaare Tzedek because that’s where I’ve been going thus far, and he was very kind and said either hospital would be a good choice but he would be happy to take on my case. He gave me his cell phone number and told me what numbers to call to schedule the bone marrow biopsy and to make my first chemo appointment.

I went home Tuesday night feeling very, very encouraged. I can beat this!!

Gaby’s Uncle was able to get me an emergency appointment with my hematologist Dr. Ashkenazi for 10:00 a.m. Wednesday morning. I was looking forward to seeing him since he has been my doctor for the past six years. You see, I have a blood clotting disorder called APLA, that really is only an issue for me during pregnancy. While I was pregnant, to keep my body from throwing clots that could cause miscarriage, I had to take Clexane (anti-coagulant) and aspirin. He was my doctor through two of my children’s births and I have been happy with his care.

It was pouring rain on Wednesday morning and we parked outside the hospital and sprinted through to make our appointment. When we got to the 6th floor of Shaare Tzedek, the receptionist gave me all of these instructions including that I need to see the nurse, then I needed to give blood and have an infusia put in (that’s the thing they put in your veins so they could administer medication and take blood) and I was just confused. Wasn’t I just here for a consultation? The nurse looked at me and said that the doctor ordered a bone marrow biopsy. And I was just floored, no one had warned me! But, it’s a test that I desperately need, so I said let’s do it.

Dr. Ashkenazi was wonderful. He was patient and kind and he explained everything about my cancer. He told me that in my particular case, the cancer decided to bypass the lymph nodes and go straight on the attack on my organs and bones. It’s an aggressive cancer and we need to kill it ASAP before it invades my central nervous system. The bone marrow biopsy will let them know if the cancer is in my bone marrow and if there is another form of lymphoma hiding in there that will guide the chemo they prepare for me.

The bone marrow biopsy was not pleasant but they gave me a sedative and I was able to zone out/sleep for about 40 minutes post-exam. It was really sore on my back and there were restrictions, but it was my daughter’s birthday and we were about to host 17 nine year olds in our apartment. My mother-in-law and our lovely neighbor Maya came to help and I was able to rest while Gaby and Maya ran the party. Yarden was in heaven, she had a fabulous time, and the day was just wonderful for her.

Today, I woke up a little late and dragged myself out of bed because I was really sore, but I managed to get things done. I had an appointment with a psychiatrist that I had set up as part of the pre-op for gastric bypass and then I had an appointment for an eco at Shaare Tzedek.

Before I can start chemo, three things needed to happen:

1) My health insurance carrier needed to approve my chemo. Apparently, they can’t administer the drug to me unless my health care provider approves it. I didn’t know that Dr. Moshe Gatt at Hadassah put in a request but 15 minutes ago, I got an email that said the chemo was approved and is waiting for me at Hadassah

2) Bone Marrow biopsy – we need to know if the cancer is in my bone marrow and if there is anything else in there. This will guide the chemo and treatment protocal

3) Eco – some chemos can damage the heart muscles, so they needed to check that my heart was in good shape and to take measurements that they can compare after a couple of months. Thank g-d, my heart is in good shape so I can start treatment and P”G my heart will be able to withstand these powerful drugs.

I’m still undecided on a hospital and doctor since I like both Dr. Gatt and Dr. Ashkenazi.  By Sunday/Monday, all of the test results should be in and waiting for Dr. Ashkenazi in Shaare Tzedek. He is not going to the conference so I can start chemo P”G Tuesday/Wednesday. I’ve been approved for the chemo at Hadassah but Dr. Gatt won’t be back or able to administer the first treatment until December 17th.

I really don’t want to wait! I want to get started on Chemo so we can kill this awful cancer!

We told the kids tonight about my diagnosis and that was very hard, but I will have to blog about that another time.

Tonight, I’m going to try to get some sleep and just keep positive! It will be a rough road but please g-d my body will respond to this treatment, the chemo will kill these awful cancer cells, and I hope and pray I will live a long and healthy life with my husband, children, and family and friends.

Please continue to keep me in your tefilot: Shira Batya Bat Chaya Yehudit

 

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