I had another CT scan last week.  The tumor is still there, but is the same size it was 6 weeks ago.  Because the PET scan (which shows abnormal metabolic activity) was clean, the oncologist says we can reasonably assume that the “tumor” is just dead tissue at this point.  He expects that it will continue to decrease in size as my body gets rid of the dead cells.  I had two chemo cycles past the clean PET scan to “mop up” any stray cells, so now I am considered to be in remission – the wonderful “r” word.  Could it come back?  Yes, it could.  Because part of the tumor showed the characteristic genetic mutation of follicular lymphoma (a slow-growing, indolent type), a relapse would not be unexpected.  So I will have appointments with the oncologist every 3 months, and CT scans every 6 months for the next couple of years.  If it comes back, we’ll treat it again.

It doesn’t seem sufficient to just say “thank you” to everyone.  I am so grateful for each and every one of you.  I am grateful for your thoughts and prayers and help.  There were times during this process where I felt hopeless and abandoned and the comments left here were a source of comfort and hope.  I have only these two tiny words, but I offer them with the deepest humility and gratitude – thank you.

I’m happy to say that I was wrong about the PET scan results that I posted last week.  In the second PET image, the one where my brain is circled, I also circled two white “hot” spots in my abdomen.  I am extremely happy to let everyone know that those are not “hot” spots, those are my KIDNEYS filtering the radioactive glucose from my bloodstream.  All of the hypermetabolic lymphoma is GONE.

The lesson for me here is to let the experts do their jobs.  I had access to the images WAY before the images were read and interpreted, and I drew my own conclusions.  The oncologist and I only briefly discussed the results of the PET at my pre-cycle 5 appointment, and we didn’t look at the images.  Finally, last Friday, we sat down to schedule my next imaging studies to determine if I’ll have 8 cycles of chemo or if I can stop at 6.  At that point we looked at the interpretation of my PET scan and it says “Marked interval decrease in size and resolution of metabolic activity involving the posterior mediastinal and retroperitoneal masses, consistent with good treatment response.”

I have never in my life been so happy to be wrong.

Last Friday, I had a CT scan and a PET scan.  I took pictures of the machines, but I’ll have to post them later because I haven’t downloaded them onto the computer yet.  On the other hand, since I have access to my medical records, I was able to take screenshots of my scans and post them here. 

CT stands for Computerized Axial Tomography.  There’s a good explanation of what CT is at http://en.wikipedia.org/wiki/Computed_tomography.  Basically, it’s a few hundred X-ray slices of your body.  They use it to provide a very detailed look inside your body. 

This is my pre-treatment scan:

 

This is my scan after 4 cycles of chemotherapy:

 

PET stands for Positron Emission Tomography.  There’s a good explanation of PET scanning at http://en.wikipedia.org/wiki/Positron_emission_tomography.  A PET scan takes advantage of the fact that cancer cells use sugar at a higher rate than other cells.  Before the PET scan, I am given a small dose of radioactive sugar.  I then have to sit quietly for a hour while the glucose is taken up and used by the cells in my body.  After an hour, I am placed into the scanner and the machine measures which cells have the highest concentration of radioactivity in them.  Busy cells use more sugar.  The brain lights up because it’s always busy.  You’ll also notice that on my first scan my breats lit up because I was nursing.

First PET scan:

 

 

 

 

 

 PET scan after 4 cycles of chemotherapy: 

 

 

 

 

 

The oncologist is happy with the progress – I’m responding well to treatment.  I’ll have two more cycles of chemo then another scan.  I won’t be happy until those white spots are completely gone (not the big one in my head, just the ones in my abdomen ).

I had my fourth round of chemo on Monday, 3/23.  The treatment itself went OK, but it started 2 hours late because they couldn’t find my orders.  The paper orders hadn’t been scanned into the computer, so the nurse had to hunt them down.  It frightens me that President Obama and his administration seem to think that electronic medical records are going to save the world.  I guess I should be glad, because as long as people think that, I’ll have a job, right?

So let me show you a little bit of what happens during a chemo treatment.  First I am escorted from the waiting room to either an infusion bed (shown in the picture) or an infusion chair (no picture, but imagine a huge purplish recliner).  I like the bed, because the Benadryl makes me really sleepy, but I’m more productive in the chair.  As you can see, I get a little table to keep all of my junk on (usually my computer, phone, coffee, water, a book).  Once I’m tethered to the pump, the last thing I want to be doing is trying to move around the room looking for something.

This is the previously mentioned pump.  The one in the photograph is a dual pump, but I only get one drug at a time, so they either use one side of this pump or use a single pump.  The reason they use a pump instead of letting the meds infuse via gravity is because the rate of infusion needs to be controlled to minimize side effects.  For example, if the Rituxan is infused too fast, it can cause allergy symptoms (itching, wheezing, rash, fever) because it’s an antibody.  If the Cytoxan is infused to fast, it can cause sinus pressure and a stuffy nose.

This is the IV setup.  It’s funny how every nurse does it a little differently.  The place where the catheter enters my skin is always visible (sorry if it grosses anyone out) because the doxorubicin and the vincristine are vesicants (they are irritating to the veins).  The nurse and I both keep an eye on the site because if the catheter becomes displaced and the drugs are administered into the tissue by mistake, it would be a nightmare.  The catheter is then secured to my arm (and usually my shirt) with either tape or the stretchy bandage in the picture above.  The objective here is to try to eliminate the risk of becoming disconnected from the IV solution.  It’s not that hard to disconnect yourself from an IV (although I’ve never personally done it).  The treatments are so long that at some point (usually multiple points) I have to visit the restroom, go get a cup of coffee or something to eat, and it’s really easy to get the tubing caught on things if you’re not paying attention.  Normally it’s not a terribly big deal if your IV becomes disconnected, but in the case of chemotherapy, you run the risk of exposing other people (nurses, janitors, other patients) to these horribly toxic drugs if you become disconnected and leak.  Needless to say, we do everything possible to prevent a chemo spill.

Here are my drugs.  Everything has special connectors at the ends of the syringes and the tubing to prevent accidental exposure for the nursing and pharmacy staff.  It might not seem like a big deal, but tiny exposures to these kinds of drugs every day for many years can cause problems for people who handle them.  My whole professional career I have handled these drugs with a figurative 10 foot pole, and now I’m infusing them into my body.  It’s a VERY strange position to be in.

In this picture, I’m getting the doxorubicin.  Because it’s a vesicant, it’s infused into an IV line that already has normal saline running in it.  They infuse a couple of milliliters, let it run down the line into me, then pinch the line closed (you can see her fingers in the right side of the picture) and draw back on the syringe to make sure blood flows freely into the line.  The purpose of this is to make sure the vein is still open.  If the drug irritates the vein to the point where it closes down, any additional drug infused would end up in the surrounding tissues, causing BIG problems.  This part takes a while (I get 3 syringes of doxorubicin plus the vincrisine) and it’s kind of like getting your hair cut – some of the nurses are really chatty and some of them don’t talk very much and I suck at small talk. 

When I’m done, they take the IV out and send me home.  I think the whole process is really interesting, but I apologize to those of you might be bored with this lengthy and slightly technical post.  On a more exciting note, I am scheduled for a CT/PET scan on Friday, April 3rd, to evaluate my response to treatment and see if I’ll do 6 cycles or 8 cycles of chemotherapy. 

Thanks for all the comments.  I haven’t been able to respond to every single one, and I feel horrible about that.  Unfortunately my need to sleep right now outweighs my need not to feel horrible about it.    But that doesn’t mean I don’t love you and appreciate your support more than you know.

On Monday (3/2) I had my third round of chemotherapy.  At this point, I’m either halfway through (if I only have to have 6 cycles) or a little more than a third of the way through (if I end up having 8 cycles).  I think I’m going to end up with 8 cycles simply due to the size of my tumor, but that’s up to the oncologist.  I will have a PET scan after my next cycle to evaluate my response to chemotherapy.  I know the tumor is shrinking because the pleural effusion isn’t re-accumulating, but it will be good to see how much it’s shrinking.

I had a little trouble with nausea this cycle.  Nothing I couldn’t live with, just this nagging, uneasy feeling in my stomach.  They gave me a rescue anti-emetic when I started chemo (Compazine), but I didn’t take it because it makes me sleepy.  The chemo makes me tired enough, I don’t want to take something else that’s going to make me tired. 

On a lighter note, here’s a picture to make you smile.  I posted it on Facebook also.

I'll get him when I get bigger!

Poor Ethan, he can’t even defend himself.  Alex loves him to death, and loves to try to play with him.  I think Alex is going to be a little upset when Ethan gets mobile and starts extracting his revenge for things like this!

My boys

I’ve written some here about Alex and Ethan and how they inspire me and help me deal with this bump in the road.  The one person who has more to deal with than I do, does it gracefully and without complaint, and has largely been underappreciated in all this, is Dan.  I would not be able to handle two kids by myself when I’m healthy, never mind trying to do it when the chemo is kicking my ass.  If he didn’t prepare almost all of our meals, I probably wouldn’t eat.  He gets up with Ethan in the middle of the night, is an expert at preparing bottles, and is wonderful at distracting the boys when I need to take a nap.  He is an extraordinary father – he and Alex spend lots of time at the library and he loves to take the kids out for fun at places like Jump City and the Chelsea Treehouse.  It always cracks me up when I hear him and Alex singing along to the soundtrack of the Rocky Horror Picture Show in the basement at the top of their lungs.  He buzz cut my hair after most of it fell out, he’s patient with me when the steroids make me bitchy, and he laughs at my developing addiction to my new Blackberry.  He will never understand how much I love him and depend on him.  Let’s give him a hand!  He deserves so much more than that…

(I know this post is late – it’s been a busy week)

 I had my second round of chemotherapy on Monday (2/9).  I’m on a protocol called R-CHOP.  It’s pretty much the standard for the type of non-Hodgkins lymphoma that I have.  I’m really lucky because there doesn’t seem to be much controversy or debate over how to treat my type of lymphoma – the treatment that I’m getting works really well for most cases.  The only debate with lymphoma seems to be deciding what type of lymphoma it actually is (more on this later).

R-CHOP consists of 5 drugs:  R – Rituxan (rituximab), C – Cytoxan (cyclophosphamide), H – hydroxydaunorubicin (doxorubicin), O – Oncovin (vincristine), and P – prednisone.  If you’re really interested in learning more about the drugs, there’s a pretty good description at http://www.cancerbackup.org.uk/Treatments/Chemotherapy/Combinationregimen/R-CHOP . 

So far, knock on wood, it’s been pretty easy.  I go to the cancer center every 3 weeks for treatment.  I get a little room with a large window and a bed.  They give me Tylenol and Benadryl before the Rituxan, which makes me a little sleepy, then the Rituxan infuses over a couple of hours.  After that I get Zofran (for nausea) and Decadron (a steroid – also helps with nausea), then the rest of the chemotherapy over a couple of hours.  When all the infusions are done, I get to go home.  I then take prednisone daily for 4 more days.  That’s it.  Sixteen days later, I get to do it all again!  Repeat 6 to 8 times to eradicate lymphoma…

I have not had a single moment of nausea since starting treatment.  Chemotherapy no longer guarantees days of vomiting and weeks of nausea.  It’s pretty amazing the therapies that have been developed to eliminate that side-effect.

I’m going back to work tomorrow.  Although I’m really looking forward to being productive and social again, I’m neutropenic (and tired) again.  And I caught another cold from Alex.  I can’t wait for spring to come and our perpetually runny noses to go away!

Although these two little guys sometimes just suck the life out of me, they really are an incredible source of strength. They make me smile when I don’t feel like smiling, they don’t care if I don’t have any hair, they are warm and cuddly to sleep with, and they always have energy.  Alex was very disappointed when I came home with a wig that was the same color as my natural hair – he really wanted my new hair to be green.  They are both doing incredibly well considering the circumstances.  I will include a post about each of them soon.

Every Thursday, I go to the University of Michigan clinic around the corner from my house and have my blood drawn. I have a standing order for a CBC (complete blood count). The chemotherapy kills rapidly dividing cells, including the ones in my bone marrow that make blood cells. Last Thursday, I reached a point where I have almost no white blood cells, particularly neutrophils. This means that my body has no way to fight an infection. I’m supposed to avoid crowded places, sick people, anything that could give me an infection. If I have a fever over 100.5 degrees, I’m supposed to proceed immediately to the Emergency Room to be admitted for IV antibiotics. I’m going to be this way for a few days during every chemo cycle. It’s going to be hard to avoid infection with a 3-year-old in the house!

The other recent development is that my hair has finally started falling out. This is bothering me more than I thought it would. I ordered some hats and stuff the other day, they should be here early next week. I didn’t think that a wig would be a good idea because Ethan is just starting to grab things, but I’m reconsidering. I work with a girl who has alopecia and she has offered to take me to a couple of her favorite wig shops. I think I’m going to take her up on it next week. It can’t hurt to try a couple on, right?

So I had another thoracentesis on Monday. A thoracentesis is a procedure in which they thread a catheter into the chest to drain fluid. They removed 2 liters of fluid from my left chest. The reason it’s accumulating is because the tumor is blocking the flow of lymphatic fluid through my lung. I had the first one done in the Emergency Room the day after Christmas, but they were only able to remove about 100 mL. The second one was done in my hospital room the next day and they removed about 1 liter and a half. I can’t say that I enjoy having it done, but it definitely helps me breathe better. Hopefully I won’t have to have another one. Once the chemo starts to shrink the tumor, things should start to flow normally again. The good news is that there are no cancerous cells in the fluid that was drained.