Oy Vey.

Again, wishing I had better news to relay to you all. But it is what it is...

Monday the moms and I headed to the ER due to major chest congestion and coughing. Luckily, it was attributed to major allergies and sinuses. The X-ray revealed no pnemonia to speak of. Thank god. However, the coughing and other symptoms has prevented me from receiving a good nights sleep the last two weeks, and added antibiotics.

Thursday morning, I arrived in New York City for my weekly check-up.  I had been feeling extra fatigued and light headed but just assumed it was due to my head cold. After several blood tests and my check-up with my NP the results came back and it showed that my Hemoglobin (red blood cells) had taken a huge nose dive as well as my potassium (major lack of elctrolytes).  I could hardly walk, or keep my head up with my numbers all over the place. The rest of the day was spent in the infusion room to receive fluids, potassium, and a unit of blood. We arrived at 9am in the office, and left by 8:30 pm that night -- long day to say the least.

This morning, I headed back there to recive two more units of blood since my levels were so low.  My reserves aren't that great right now, but I'm attempting to hold tight and see where this takes us. For the first time, in a really long time my oncologist team is again feeling that these symptoms do not have anything to do with my cancer, nor the treatment. SGN-35 is not suppose to cause 'counts' to bottom out. So, today, my NP decided to do addition blood tests to see again... where these mystery symptoms (the fevers, vomitting, low counts) are coming from.  We are all feeling again, that something else, or some type of infection continues to rear its ugly head from week to week, and no one can put their finger on what it is. To say it is frustrating would be an understatement.

On a good note, this is the last 'weekly' check up I will have. My visits once a week to New York have definitely taken a toll on myself, my body, and my family and friends -- we are ready for this part of the trial to be over. After next week, I will only have to return to NYU for infusions (once every three weeks).  So, we cheer for that.

In addition, I'm staying at the Hope Lodge througout the weekend and next week. I have received two cycles of SGN, and next Thursday morning, May 6th, I will have my first scan. If the scan reveals stable disease (which we hope for), I continue on this trial, and receive treatment (for cycle three) the next day, May 7th.

This part of the trial has been a long one, I'm grateful and thankful that it is over, and hold onto hope that the scan and future treatments reveal promising news. Thank you all for your kind thoughts, and positive support. I'm not sure how I would keep truckin' along without each and every one of you.

Lastly, I  officially turned 'two years old' on April 22nd. Although, yes, my transplant failed, it is still an accomplishment -- that I'm here -- still kickin :)

Sending Love,

Bekah

Update

I've decided I hate reporting bad news. I love making people smile with my good news. Maybe I am not cut out for this cancer lifestyle -- I'm ready for a new life now please! :)

Alright, here we go, quick and dirty:

• - As easily as the ESR rates came down, they bounced back up (around 80ish). Dr. O said this will be normal, eventually during that second or third week of blood work, we'll chizzle that 80 down to 70 and so on.... I'm putting a lot of faith in him lately, lets hope he's right. We'll find out this Thursday if my ESR has gone down again since I had treatment at the end of last week (the 15th).

•  - I had a mighty rough allergic reaction to the SGN this time around. It was scary. I wish not to discuss it. I'll be pre-medicated during my next cycle, to prevent this from happening again.

•  - My 'feel good week' and no more fevers/vomiting, ended right before my infusion last Thursday. The fevers roared back after I was at the end of my Leviquin dosage (anti-biotics). So, once again I'm being slammed with anti-biotics, IV fluids, fatigue, night sweats, you name it.

The most difficult thing for me, is to taste the sweetness of just... feeling good and then all of a sudden it being taken away.  It appears that every time I have a small glimmer of light, a huge wind just blows it away. I'm trying to handle my emotions in as much of a consistent manner as possible, but I'm not going to lie. It's difficult. When you have good news one week, and not so great news the other. When you feel SO good with blood counts, and then... they dip or crash. Some people have no idea how much their mind really is connected to their body.

I really am trying though, behind all of this I still attempt to be grateful.

These things I am oh-so-grateful for, would be: My family, knowledge that I have the resources to keep me alive as of now, really REALLY good-beautiful-kind hearted-understanding friends who are going with my flow because everyday I feel differently, an amazing team of doctors who literally hold my hand when things appear out of control, a roof over my head, FOOD. I have a lot. I know I do.

It's just when you know there is more... outside of this cancer life. You want it. You want it badly.

I want it.

B

Big News :)

This is a little bit of shocking news, hence the 'oh my gosh!' gasping face I am posting for all of you... what a difference a week makes!

And by the way, I apologzie, you will all have to suffer with these type of shots, if any, because unfortunately my camera is still in Boston.  So I am unable to shoot pics with friends. Anyway, lets get to the good stuff...

Thursday Diane and I hoofed it back to NYU for my 'check up.' I will have these weekly 'check ups' for the next five weeks, as protocol for the clinical trial. One of the blood tests that is looked at weekly is my ESR or your SED rate, my nurse practictioner defines it as the following:


ESR is a blood test that we monitor with our Hodgkin’s patients.  It is a non-specific test that measures inflammation and in HD it can sometimes correlate with active disease when elevated.

ESR  is also known as = erythrocyte (Red blood cells) sedimentation rate or your SED rate: rate at which erythrocytes settle out of anticoagulated blood in 1hr.  This test is based on the fact that inflammatory and necrotic processes cause an alteration in blood proteins making the red blood cells stick together, causing them to become heavier and more likely to fall rapidly.  The faster the erythrocytes fall the higher the ESR level.

The normal range is different for men and women – for females, a normal 'healthy' range is between: 0-20

So, before treatment my ESR rate was 130, signifying that there was definitely a moderate to significant amount of disease within my body.  But you would not believe the news I received today.... After one infusion, a week later my ESR level was at a 5! A NORMAL range! This test does not ultimately tell us for 'sure' what is going on specifically with my disease, only a PET/CT scan will do that. However, this is REALLY good news for a small blood test, it alludes that although I haven't had any horrible side effects... that this treatment, is definitely doing its work on the cancer.

For now, we hold onto these good moments, and just keep on keepin on..... (while smiling!).

Sending Love,

B!