Updates....Good Ones! :)

I've anxiously been checking my UCSF chart online for results from my PET scan on Tuesday.  Finally, this morning Dr. Andreadis called to say it was clean!  Whoa!  I'll continue receiving my brentuximab treatment for now, but that's fine.

Aunt Rara came to visit us all the way from NY for 9 days!  We had great fun visiting supermarkets, grocery stores, gourmet markets, and restaurants.  No time for museums with so many stores here!

Cristina's last day with us was last Friday.  We're sorry to see her go, but Nicholas will still hang out with her on a weekend day occasionally.  Nicholas and Carson now have a new nanny named Tania on Tuesdays and Thursday, who is wonderful.  She's a former preschool teacher and perfect for this phase of their lives.  Nicholas will be in a preschool prep program on Mondays and Wednesdays part-time, and I'll be a mommy the rest of the time!  Big changes but it'll be fun (and challenging) to be with Nicholas more.

Taking pics of ourselves before music class....

Not much time to write/post/search for pics (not sure why a bunch are missing from my computer right now) since Nic is needing attention!  Cheers! 

Oh for Pete's Sake.

I had a scan last week which has revealed a couple new areas of disease in my chest and neck.  This is a real bummer.  I'll be going back on Brentuximab (aka SGN 35, Adcetris) infusions which I had prior to and post transplant.  I responded well to the drug after transplant before (my residual disease disappeared prior to the graft really completely taking effect), so there is no reason to think that won't happen again.  The infusions are every 3 weeks for about 45 minutes (which means about a 3 hour office visit), and the side effects are very minimal -- I'll probably experience some neuropathy (numbness) in my fingertips as I did before, and perhaps some fatigue, but that should be it.  I'm also being tapered off the immunosuppressant really quickly and am now totally off the steroid in order to allow the graft-vs-lymphoma effect to work to its fullest.

Life goes on.....

a baby and a brush cut

Today I basked in babyland....my friend Megan had baby Jamie 3 weeks ago, and oh is he perfect!  Megan and her hubby Brien seem to be on top of everything, but I was happy to be able to share one important nugget of advice re. how to diaper a baby boy and not end up with pee UP the outfit :)  Congrats to the great new parents!

Earlier this week, I got my first haircut for almost 2 years!  I had been contemplating getting one for a while now because the "wings" over my ears had been bothering me.  And my hair was all one length and I wanted some more shape.  Then, I saw an ad on my mothers group forum for a salon looking for hair models.  I felt like I didn't have a lot to lose (certainly not a lot of hair!), so I went for it!  I went to Tease Salon in Laurel Heights and had a great girl named Lena with her instructor Rick and a FREE cut!  It's so fulfilling to save money :)

So here's baby Jamie and the new 'do....

I also had a cervical and thoracic MRI this morning because I've been having excruciating back pain for the last several weeks.  It seems like one when problem seems to resolve itself, something else pops up! Anyway, my NP Stephany called this afternoon to say that the initial report didn't show anything that looked like Hodgkins (no masses, that is), which is good.  There may be a bulging disc but more info is needed from Radiology first.  So for now I'll just keep up with the pain meds and wait for more info....

Fire Trucks and Frustration

On Saturday, we were on our way to our beloved warehouse store (Costco), when we spotted a few fire trucks parked at the beach.  They were not obviously involved in any kind of emergency mission, so we pulled over and took Nicholas for his first up-close visit.  A friendly fireman even let him drive his hook 'n ladder!

oh?  bah!  (Nicholas' phone dialogue)

Call me Capn. Curly Head!

I just came home from the doctor, who reported (not surprisingly) that the biopsy results from Friday were pretty inconclusive.  They did see some inflammation, but they can't confirm that they got a good sample of the nodes to totally rule out Hodgkins.  Oh well, it was worth a try.  As far as next steps go.... Dr. A is communicating with a pulmonary surgeon about the possibility of performing a more precise biopsy (more of a surgical procedure) or possibly removing the nodes themselves.  Will provide updates as they develop!

I had a little lung biopsy today

I got a call from my NP this morning that those pesky nodules in my left lung have gotten a little larger (I had a CT scan yesterday). She and Dr. A wanted to go ahead and try to biopsy because the radiologist said he thought they could "get them" now just using a needle through the chest wall (vs a more major surgery discussed when they were smaller).  They wanted a biopsy to try to confirm whether it's truly an infection in my lungs (which wouldn't be odd given the immunosuppresant meds I've been on) or is it Hodgkins...

So in I went to UCSF Medical Center (not my original plans for this fine SF day!). The procedure itself was about an hour and a half and it was quite uncomfortable. It was difficult to actually get the needle to the nodes because the lungs are always moving as you breathe, and so are the nodules. So the goal is to get the patient to take consistent amounts of breath as they would on a CT Scan so they have a good "guess" where the nodes are. The docs had to make at least 5 or 6 attempts and may have gotten an okay sample at the very end.  Oh and I wasn't sedated a bit...wide awake for this!  Right off the bat, the pathologist didn't see cancer cells, but there is a lot more studying to be done. They also have to give the sample time to grow (which would happen in the case of an infection).  In the end, we may not have any more decisive answers but we'll wait and see!

Now this weekend, I need to lay low and not pick up anything heavy (Nicholas) so I don't blow up the little puncture from the needle in my lung.  I don't want a readmission from a collapsed lung!

On another note, I wanted to share this deal currently taking place at Athleta (thank you kerry for the alert)!

Something Amazing Has Happened*

I went to clinic today to meet with Dr. Andreadis and receive my infusion of Brentuximaub. We discussed my scan from Tuesday. He met with the radiologist yesterday about the scan and the BIG message was....

I'm in REMISSION*

I am putting an asterisk next to that beautiful word because there is just one (or maybe I should say two) question mark(s) that remain(s). Those two little nodules in my lung are still there. They haven't grown at all since the last scan, and after his conversation with Radiology, Dr. Andreadis is very reluctant to label them as Lymphoma. He thinks they are "fungal balls" (pretty image, right?). In other words, he thinks it's some sort of fungal infection. But there are no Lymphoma "hot spots" elsewhere in my body, and it's highly unlikely for Lymphoma to only appear in one's lungs, so that is why he says I'm in remission!

The only way to prove that it's infection in my lungs is to biopsy the nodules, which is an invasive surgery. So I'll have another scan (probably without contrast) in 6 weeks, and as long as the nodes do not grow, there will be no biopsy. 

In the meantime, I am "taking a break" from Brentuximaub. I did not get an infusion today. There is thought that it may be contributing to my high liver levels, which by the way were normal today. So the potential liver biopsy has been cancelled. Dr. A adjusted my meds a bit today (back on anti-fungal to address lung nodules and decreased immunosuppressant).  

What an amazing morning. Now I need a cupcake!

Hospital Again

Last night around 5pm, my skin started burning, as if I had sunburn all over my body. It was also really red, like a lobster. I realizes fairly quickly that I was probably having a reaction to the CT contrast (dye) that had been injected earlier that day. So after putting Nicholas to bed, we headed over to the ER (luckily, Joe and Diane were in town and stayed with Nicholas!). The ER was extremely quiet and I got attended to right away. To my dismay, I was admitted to be observed overnight. I had spiked a fever and this in particular made the doctor concerned. They gave me some antibiotics and other meds that I don't remember. This morning my skin looked better (not perfect, but improved). After some ho-humming about being discharged, we are now waiting for my for the official papers which will give me my freedom today!

I'd love to show you my very red skin but the one pic I have is extremely unflattering. So instead I'll share this one below of the strike taking place right now at UCSF (which is why the ER was dead last night. Nurses aren't on strike but practically all other hourly employees are. They are sending patients to Stanford and Davis for chemo because there is no pharmacy staff to mix the drugs. Transplants are postponed. Nurses are staffing the food lines in the cafeteria. It's a real pity for those with life-threatening issues and if anyone cares to send a letter to the judge who allowed this to happen, his name is David Brown and he's in Sacramento.  Oh and it's not only at UCSF but also at 5 other UC medical centers!)