April 28, 2016

Excuse the car picture. We were waiting in line at the pharmacy for Jackson's meds as he has a horrid sinus infection, of course. CLL Update! My neck lymph nodes are MUCH smaller - after just one round of chemo. This is the desired goal, per my oncologist. I am so thankful! 

This week has been much better. I have been able to go back to the normal daily routine, and it feels amazing. You don't realize what all you take for granted until you can't get out of bed due to extreme fatigue and nausea. Dreading next month already...

I got into MD Anderson in Houston, TX next week. We are excited (are we? Excited? Well not really: anxious) for appointments with top leaders in the CLL world. Thank you to my parents for coming to keep Jackson (and our dog, Presley) while we are gone. I will keep you updated as we know more :) 

April 22, 2016 - Day 3 & 4 post chemo #1

It's been a hard few days - and I usually consider myself pretty tough - but this has knocked me down for sure. The only one happy about all this down time is my 4 lb, 12 year old chihuahua, Presley. One must have a pet during things like this. Must! Hoping for a better weekend :)

April 19, 2016 - Day 2 of Chemo, 1st round

Tracy, the friend I mentioned before, who is a nurse practitioner who recommended I get these wild lymph nodes checked out was with me both days. She has been such a good friend and doctor. Explaining all the newness and unknowns - I am so thankful for friends and family right now!

So far I feel a little exhausted, but mostly just from the adrenaline rush that has been the last 20 days since diagnosis.

I'm on anti-viral meds, I am stock piled with antibiotics to take should I get the first sign of any illness, and I'm on strict instructions to stay away from anyone even with the sniffles. He told me to not be around any children. I raised my hand and said, "well, I have one... so there's that!" He told me 8 years old is much better than a 1 year old in daycare.

Expectations: I am able to work out if I feel like it (#purebarrelife), I'm able to travel (only in the US), I'm able to carry on as normally as I feel like. He said a few days after the treatment each month is when my immune system will be at its lowest and when I should feel the most fatigue. I am stock piled with anti-nausea pills as well. He does not expect that I will lose my hair, but he was careful to make sure I understand that everyone reacts differently. Obviously, if I need to lose my hair to get better - we are on board!

Currently the most uncomfort I have is from a very swollen, sore arm from IV's x 2 days. So I'm trying my best to take it easy. Which is hard for me! I want to be at Pure Barre with all my soul. Maybe tomorrow, maybe next week, who knows. I'm going to listen to my body and take it easy - I'm determined. But its hard - cancer picked the wrong person!

April 18, 2016 - treatment plan and first day of chemo

Jack and I met with our oncologist to go over my CT results and bone marrow biopsy. The CT found that there are more abnormally large lymph nodes in my abdomen (where?! I do not understand!) and my hips. The bone marrow biopsy finally did show some elevated white blood cells and other marker signs of CLL.

30% of my bone marrow is affected with CLL. This means we are dealing with a Stage 4 CLL. He was very careful and hesitant about telling me about this staging. He did say the stage is not to reflect "terminal" status like with some acute cancers, [in cancer think: acute = fast growing; chronic = slow growing] but rather the staging tells us how to treat it. He assured me he has treated CLL many times, and even many times in people my age.

He wanted me to begin chemo that day. The chemo regimen I started has a 90% effective rate, which in the oncology world is very, very good. My regimen is a 2-day treatment (one long day, followed by a shorter day) once every month for 6 months. The chemo drug names are: Rituxin and Bendamustine.

We will possibly explore second opinions, but for now we just wanted to get it all going.

Day one was long, exhausting, and just overall not comfortable - but I get by with a little help from my friends.

April 15, 2016 - When life gets hard, take it to the Big Easy.

So my thoughtful husband decided we could not possibly sit around for another weekend dwelling on the unknowns. So we booked a last minute flight to New Orleans for a much needed weekend together without Jackson. We needed some time together to discuss all our fears, hopes, and lose our minds a little in good music on Frenchman's street, amazing food in the French Quarter, and bars that serve mimosas at all hours :) It was just what the doctor ordered.

April 5, 2016 - First visit to West Cancer Center

So after clearing it with my ENT, I still went to St. Louis that weekend to help launch our newly incorporated cardio class at Pure Barre called, Pure Barre Platform. I was also able to tell the horrible news to my entire team in person - which meant a lot to me. I dreaded it deeply, but was glad the timing worked out that I was able to do so. My ENT told me I could go, but to make arrangements to return to Memphis as soon as I get word of an appointment at West. So I came back Monday afternoon. My husband and I met with our oncologist, Dr. Arnel Pallera, at West Tuesday, April 5.

He told me this type of cancer is usually in much older people, meaning 60s! and it is usually found in males. He told me that he thinks I've had it for several years. I have noticed over the last 2-3 years my sinus infections have become more frequent and harder to fight off. I also opened 2 businesses 300 miles away 8 months apart, so getting sick more frequently did not give anyone any red flags. I was worn down naturally. I was also raising a very busy little boy at home as well so I was always just trying to keep up. But he thinks the repeat, more frequent infections were/are because my WBC's are being replaced by cancer cells.

He told me I needed another CT to include my abdomen and hips, and a bone marrow biopsy.

So Friday, April 8 I had both done. The bone marrow biopsy - wow. I hope to never do that again. It was quite a painful recovery. Nothing like a large man putting his entire weight on your body with a screw gun into your backside hip bone. gahhh.

Our next appointment would not be until Monday, April 18 to go over the results and treatment plan.

START HERE!!! Background of the diagnosis

First of all, thank you for joining me here. This is only for those who want to keep up. No pressure to read it at all! This is all very detailed as to give you all answers you may need.
Thank you for loving me! ~Heidi

Here we go... I noticed swollen lymph nodes on my neck in August 2015. They were painless and did not bother me at all. I don't have a spleen (car accident in high school), I don't have tonsils, and I have horrid allergies. So I'm a sinus mess and battle infections often - which is nothing shocking considering all of the above puts a lot of stress on my lymph system to fight anything off. At a PCP dr visit last August because of a suspected sinus infection, I mentioned the nodes on my neck seemed larger than I'd ever noticed. She agreed and ordered a mono test - which was negative. My sinus infection came and went. I had another infection in November, which also came and went, but the lymph nodes on my neck never changed. Also of note, my white blood cell count was normal this whole time.

In January 2016, I noticed smaller bumps right above my collarbone as well. I didn't know if these were lymph nodes, but assumed so. I asked a brilliant nurse practitioner friend of mine, very casually, as I was putting on my headset to teach a Pure Barre class one afternoon, "Hey, is it weird I've had these lymph nodes here for months? They don't hurt, and I don't even notice them until I touch them. Now I have these bumps on my collarbone, too." She felt them and encouraged me to see my PCP again. So I did. After 4 vials of blood, chest and sinus x-rays, a physical exam, and an ultrasound of my lymph nodes, we found no infection - just abnormal sized lymph nodes, which we already were aware of. So she told me to see my ENT.

I see my ENT end of January 2016. He explains to me again the natural overworked lymph system I have (no spleen, no tonsils, bad allergies) and wants me to do a round of antibiotics to rule out a baseline infection. Which made perfect sense because I will often have a bad sinus infection with no elevated white blood cells, so this plan I thought was good. He wanted me to do that and then have a repeat ultrasound in 6 weeks. I finished that round of antibiotics, and also ended up doing another round between that time since I ended up with bronchitis as well, had the repeat ultrasound with zero change. They hadn't increased, which was good. They didn't get smaller, which was what we were hoping for. They stayed the same, which meant more tests. So a few weeks later I went in for a CT scan with contrast (the dye injected into your veins) of my neck and chest. The lady blew my veins TWICE - which feels like someone pouring rubbing alcohol all over an open wound. After the second one, I was about to walk out. I was starting to think this was all pointless because again I FEEL FINE. I literally had just taken a Pure Barre Platform class before this appointment, which if you've done Platform, you know takes a lot of HEALTH and ENERGY to complete. So anyway the lady called in someone else who did the stick - which worked the third time.

My ENT called 2 days later saying the CT showed abnormally large lymph nodes "too numerous to count" in my neck and underarms. (Underarms? Where! I don't see them or feel them! This is all so bizarre.) So he recommended we do a needle biopsy of the largest lymph node in my neck. I said, "ok well I go to St. Louis this weekend for work. Maybe the next week?" He says, "No, I'm not in the office tomorrow, but I'm coming in to see you. Please come in and lets do it tomorrow." (which I should have known meant he wasn't expecting the best - because what dr is in a hurry?)

So I met him the next day, he numbed up the entire right side of my head and neck, and took several needle samples of the largest lymph node. It was not pleasant, but he prepared me for that, and he was fast and efficient. He then told me the results would not be back for a week, and if its bad news, he does not like to do that over the phone. I said, "well I really don't have time to come back. I'll be in St. Louis all week. Please just call me with whatever it is. I give you my permission." (because I don't have time for yet another dr visit, much less CANCER).

Well, he calls me the very next day. I'm driving on Mendenhall in East Memphis toward Houston's restaurant with my 8 year old, Jackson, heading to meet Jack for dinner. The phone rings, its my ENT's office, at 5:15pm on a Friday. "Heidi, its Dr. Touliatos. I don't have good news for you." All I could think was, "don't wreck the car." I was not quite to Houston's yet so I pulled into the Whole Foods parking lot, trying to keep Jackson in the car as he thinks we are headed in for dinner. I cannot even tell you what he told me I had. All I heard was, "the good news is, if you get leukemia, this is the best one you can get." I just said, "leukemia? what? how? I feel fine"... anyway then I asked him to text me the name of it because I could not even process. He recommended a colleague at West Clinic who he highly valued as a blood cancer doctor. He said when we hang up he is giving him a call. And he did.

April Fool's Day 2016 was one for the books.