Let me start by saying that I am sorry that I haven't posted in so long. Life has been it's now-typical rollercoaster self for the last 4-6 weeks. Needless to say, things have gone from high to low and back again.
Last we left off Elizabeth had just finished up her 2nd cycle of DA-EPOCH-R. She left the hospital on a Tuesday I believe and went in for her Neulasta shot on Wednesday. That Friday things got progressively worse. She began to have some serious shortness of breath and she was asked to come back and get a unit of blood to help with some other issues. When she returned to the clinic that Friday afternoon, her temperature had spiked and Dr. Safah wanted her admitted immediately. Little did we know what would be next. She had a CT scan that Friday that showed a complete obstruction of the left left - essentially the left lung had collapsed. Her pulse was 150-160 and her temp was dangerously high, especially for someone whose white blood cell count was essentially zero. The were going to do a thoracentesis (a fluid tap) on her left lung to remove some fluid that was showing up on x-ray. The problem with this whole ordeal is that it happened on a weekend and her blood numbers were plunging from the chemo. They ordered two units of platelets (and of course they had to be shipped in from Hammond because Tulane didn't have any to match). She then had to wait all day on Saturday and Sunday with severe shortness of breath so that they could infuse the platelets. It was extremely difficult being in the room but not being able to offer any help to her other than support. I felt terrible watching her suffer so much.
On Sunday evening, after waiting all day for the platelets, the pulmonary fellow told us that they were going to hold off on the procedure until in the morning and might cancel altogether and just do a bronchoscopy. Ok then. Now Monday comes around and we demand that they do something even though her platelet numbers were a little low even after the infusion. We knew the risks but she needed to be able to freaking breathe. Long story short - they did a bronchoscopy (went into her lungs with a camera and other instruments through a tube) and the thoracentesis after all. They collected tissue from a large mass that was blocking her left upper airway. They also removed almost one liter of fluid (over 2 pounds) from around her lung. Needless to say, after the procedure she was breathing much better. The pulmonary doc told us that he thought the mass was necrotic tissue from a dead tumor. Well, this was good news. Now we just had to wait on the pathology results.
The pathology results came back on Wednesday - two days after the procedure. Unfortunately, her breathing didn't stay great for long and she was getting more fluid build-up around her lungs again. Certainly we were nervous but the results of the pathology report said that the mass was just necrotic tissue - no active cancer. Awesome news...now we just need to get it out of the way so she can breath. Maybe the DA-EPOCH-R was kicking ass and taking names. She was also negative for all fungal and bacterial infections so we didn't have to worry about that as well.
They scheduled another procedure for that Friday to remove the mass. More fun. She has now spent over 10 of the past 14 days in the hospital. Not a happy camper. Anyway, the pulmonary doctor and a cardiothoracic surgeon performed another bronchoscopy to remove the mass. They quickly got rid of the necrotic mass but the lung did not re-inflate like they had hoped. This was certainly bad news. They continued to probe around and found some suspicious spots in her lung - both the upper and lower lobes. They told me that these lesions bled when they took tissue samples from them and they had active blood supplies. These are not good things as active cancerous tumors have a vascular supply. Dr. Safah called me as I was headed to the Memphis airport to fly back to New Orleans. Needless to say she did not sound very encouraging. However, she did have a plan and that is always good to know. She told me that she consulted with all the doctors involved and they looked at the x-rays, CT scans, and discussed the procedure. They all believed that the cancer was still there and active. Great. Another failed chemo regimen. We could only get 2-3 days of good news before the reality of the situation came crashing back into our front yard. Bummer.
We hung out all weekend at Tulane and Elizabeth was struggling to get out of bed because of the chest tube and soreness from the procedure. But as always, she fought like crazy to keep active and get better. I ended up leaving before the results from the pathology lab came back that next Wednesday - a confirmation that the cancer was still there in both the upper and lower portions of her left lung. Such a disappointment because the EPOCH regimen had nuked most of the cancer. Tumors were very minimal now after 2 cycles of this stuff - it had really done a number on them. What next? Well, we were now faced with the prospect of turning to the drug we wanted to keep for a rainy day. Guess what - it was "raining" now! Elizabeth received her first dose of the new wonder drug, brentuximab vedotin, that Thursday. Its brand name is Adcetris and was studied as SGN-35. It has been remarkable so we needed to try it.
She was released from the hospital after getting her first dose. This was in early October (the 4th). All the while, I was back in Memphis doing what I do - working during the week and planning a weekend trip back to Louisiana. 5 months of this stuff was beginning to take a toll on me. It's hard spending voer 12 hours every weekend driving - and then coming back to an empty apartment. But if I had to do it all over again, I would. Whatever it takes to get her well is what will happen. We had to sell the house that we built in Collierville. It was extremely difficult - more for me than for her. She wanted to make sure that we would be fine without her working for a long time and we decided it was best to sell. Our builder had another house he had just finished and we decided to buy it. Glad I did because the best thing happened about 10 days ago - my family moved back to Memphis. Dr. Safah gave Elizabeth the ok to come back home. I have been on cloud nine since. My family is whole - if even for only a few months before her stem cell transplant.
She received her 2nd dose of brentuximab last week (10/25) and has done well so far. Anna had strep throat when she got back up here and Elizabeth got a sinus infection but both took some antibiotics and are all cleared up now. Elizabeth has been nothing short of amazing so far - walking the stairs all of the time and running some errands, taking care of the girls, etc. She has been breathing much better and her pain is starting to subside. Knock on wood - maybe this drug is working. We can hope, can't we?!?
Dr. Safah's nurse, Melissa, also delivered wonderful news last week...they have identified a perfect match for Elizabeth's stem cell transplant. It is a young female donor and so far, she is willing to donate. They got in touch with her and did a more extensive tissue typing and confirmed that she is indeed a 10/10 match. Now we just need to beat this cancer's ass and get her to transplant. If I've learned anything from this incredible woman the past 14 months it's that she will NOT take no for an answer. She will win this fight. I still can't believe that is has been over a year since we started this journey and we still have a very long road ahead. But I am confident that we will navigate it and come out of the dark tunnel at some point in the very near future.
God bless you all and thank you for your continued support and prayers. Love always,
Scott
