Happy Tuesday! I was finished by Noon at Shaare Tzedek today, so I thought I would take advantage of the time and update my blog. Thank g-d, I am feeling physically good and I’m in really good spirits. We had a really nice Shabbat in Ashkelon and the change of scenery plus the warmer weather really just made a huge difference. We were sad when Shabbat ended because it meant leaving our little 25 hour escape from reality.
I’m sorry I haven’t been able to respond to every message and WhatsApp lately, I’ve been working a lot and with whatever energy I have left, trying to spend it on Gaby and the kids.
Physically, I’m thank g-d doing okay this week. I’ve been taking the Neupogen shots which are thank g-d working! Today my white blood cell count was up to 10,000 which is great and I have to do two more shots before my third round of R-CHOP next Tuesday. I made the mistake of drinking freshly squeezed OJ over shabbat and my gums got really swollen and I got sores in my mouth. Fortunately, my gums have gone back to normal by this morning and I made a mental note to avoid freshly squeezed OJ until chemo is finished. Aside from the pains I get from the Neupogen shots, and needing a lot more sleep than normal, I am B”H having a good week.
Mentally, well, that’s a different story.
Look, I’m fighting. I am, I’m fighting hard over here. But I haven’t had sugar since November 19, 2017. I’m also off of chocolate, dairy, white flour, alcohol, fried foods, spicy foods, and certain fruits and vegetables. I don’t hug my husband because I’m still in niddah and I basically don’t hug my kids because one of them is either coughing or complaining about something hurting them. I don’t touch anyone else because there’s always a risk of catching something.
There are days when I have to give myself two shots in the stomach, which is not pleasant. The Clexane burns like heck when it’s injected and because of the construction of the needle on the Neupogen, it’s really hard to get it to penetrate the skin below my belly button. I say a perek of tehilim every time I need to do a shot but it doesn’t always help. I have a PICC line that makes sleeping on my left side impossible and I’m afraid to lift any weights because the PICC line is jutting out of my left bicep. When the nurse (who is lovely and amazing and so, so nice) cleaned my PICC line this morning, she accidentally pulled on it and I’ve been in pain ever since.
This is what I look like in the morning when I need to wake up to make Aruchat Esser and breakfast. Gloves on my hands are not shown, but since Tani has been coughing, I’ve been wearing masks and gloves around him.
I’m not allowed to go into crowded spaces because of risk of infection, which means I haven’t been to a movie in two months. I need someone to come with me on a walk around my neighborhood since I can’t be alone, and I’ve gone from someone who hasn’t really thought much about being regular to obsessing about poop.
On the nights when I’m able to fall asleep, I have nightmares that jolt me awake and leave me drenched in sweat. My anxiety levels are through the roof and I’m scared all the time. The first thing I think about when I wake up in the morning is that I have cancer, and the last thing I think about before I fall asleep at night is that I have cancer.
I’m still fighting. I’m still trying. I’m staying as positive as I possibly can be.
But lord, I just need SOMETHING to help me take the edge off.
I want some pot. I do. I want some medical marijuana to help me relax. I want some cannabis to help me with my cancer fears.
I want to laugh again. I want to hug my kids again and not be scared that I’ll catch something that will make me really sick. I want to go to a supermarket again and not have anxiety over touching a shopping cart or handing over my credit card at the register.
But, my amazing, incredible doctor doesn’t believe in medical marijuana. And I love and 100% trust my doctor. I believe he has his eye on the prize, and the prize is curing me of this horrible disease. During today’s meeting, I mentioned that I had gone to see another doctor for a license for medical marijuana. Not to go into the whole story, although it really is quite the story, I didn’t end up with the license but I did end up with a third opinion. My amazing, incredible doctor listened to the whole story and then basically asked me to reconsider medical marijuana. He basically said that I really got this, that I can do this, and I can trust that I’m in the best hands possible.
He told me that when I walk out of my Tuesday appointments, I should basically try to forget that I have Diffuse Large B-Cell Lymphoma. I should go out. I should go dancing! I should go to work (I’m still working BTW), cook for my kids, and just get on with my life. I should find a support group or talk to other people who have cancer or are cancer survivors.
I so, so want to be this person he thinks I am! I want to be the person who walks out of a Tuesday appointment and forgets that I have cancer. I would love to hire a babysitter and go out to the movies! I haven’t been dancing in years but it would be nice to maybe go to a museum.
But if I can’t have cake or cookies. If I can’t have Crave or Ben & Jerry’s. If I can’t cuddle with my kids or my spouse. If I can’t run my fingers through my hair. If I can’t go to the movies or order an extra dirty Ketel-One martini at my favorite bar. If I can’t lift weights or work out. If I can’t put on mascara for fear that the weight of the make up will pull out my few remaining eye lashes.
If I can’t live life the way I used to live it, then I want a little bit of Mary Jane to make me not care about all the can’t.
And hopefully help me focus on all of the can’s and the blessings that I really do have in my life.
Please continue to daven for me: Lior Shira Batya bat Chaya Yehudit.