Rhode Island Escape and CEP Start

No energy to write a long blog, though I’ve got many story nuggets collected. Consider this an executive summary of what’s been going on with me.

We spent two weeks in Narragansett, Rhode Island. It is beautiful, especially the beaches. We rented a cottage the first week with Craig’s brother and his wife and our niece and nephew; the second week with my parents and sister. We had visitors on top of that and it was relaxed and easy – for the most part.

Highlights:

-Getting to play with our niece and nephew in the sand and water and be with them for their morning and evening routines. They are adorable.

-Spending time together with our brother and sister-in-law who we rarely get to see.

-The sun and ocean and sand: warm, sparkling and soft.

-Bringing our beach chairs right down into the water and reading a book while the waves rode over our feet.

-Being with my parents and sister on the beach all day bringing back so many childhood memories.

-Steamers.

-Lobster rolls.

-Del’s frozen lemonade.

-Sunset cruise in Newport Harbor.

-Staying for a night at a special friend’s fabulous Newport ocean-side beach house – even though Craig lost the key and the debacle that followed.

-Escaping for a favorite couple’s wedding and reconnecting with many college friends from UConn.

-Watching Jaws on the beach with thousands of others on beach chairs under blankets with the ocean and a full moon behind us.

-Visits from friends and their kids and even an overnight with my parents’ longtime best friends and their son.

-Fantastic outdoor showers.

-A visit from my brother and his wife on the last night.

Lowlights:

-Adjusting to the side effects of the difficult CEP oral chemotherapy I am currently on – incredible fatigue, lightheadedness, thrush and mouth coating, no appetite. I started it on vacation so every day brought a little surprise. 

-Difficult mornings/early energy then big crash that didn’t jive well with other’s schedules.

-Major frustration surrounding how weak I am and not being to help out much with the kids or beach packing or anything, having to be so focused on not throwing up, and on garnering the strength to get my bum from the house to the beach.

-Breakdown moments missing my old days of swimming and boogie boarding and biking and paddle boarding – all of which I couldn’t do. Tried to push resentment away but it was difficult.

-Breakdown moments surrounding people having to help me and again, not having the energy I wanted. I had to keep shifting expectations and knowing that everyone else was there for a slow, relaxing time too and all did their own thing in our own time. It was very hard to let go.

-After one week on the CEP, I had to get my blood counts checked at the local hospital. Got a call that night from Dr. O that it was unsafe for me to go through the night without a transfusion. My platelets dropped to 6,000 and my hematocrit was under 23%. I spent the night in the ER/hospital with Craig receiving both blood and platelets. My port leaked and I woke up covered in a bloody mess. Otherwise, the nurses were very kind and the facility beautiful.

Because my counts dropped too low, I have been pulled off the CEP regimen until they rise. This was not unexpected as we knew it’ll be a fluid process as we watch how my body reacts to it; that’s the only reason I signed onto the idea knowing that there were no hard and fast rules but that we would listen to my body. I have not been on treatment for about 9 days now, only remaining on the Prednisone which is the “P”. I’ve been on Prednisone for almost two years now regardless, but it still makes me crazy. I’m very emotional and still dealing with breakthrough pain, pain management and functioning on narcotics trying to find some kind of balance.

I was in the hospital again for the day yesterday needing more blood. It is obvious that we will need to reduce the dose of this regimen or move on from it. I’m worried about playing catch-up again. The longer I am off of treatment because of low counts, the more chance there is of the cancer growing. Again, seeking that magic drug that won’t knock me down and will just keep things at bay.

We’re now talking about adding in Rituxan, which has just started being used off-label for CD-20 positive Hodgkin Lymphoma. It is a targeted antibody that has proven effective in NHL and CLL. Supposedly no side effects since it is even more targeted than SGN-35, however, big risk of scary infusion reactions.  I think that it is worth a shot though.

I took a complete break from all correspondence, social media, writing, blogging, etc. so it’s been a bit of a crash landing getting back into reality. Having everything scattered and unopened does not help my anxiety level. I can’t run and hide from reality forever. I just want to be comfortable physically and emotionally again and am working day by day to get there: some days are easier than others. Ones spent on the beach with the people I love were certainly the easier ones. Now it’s back to being alone every day and trying to figure all this shit out. What do I do with this time? How do I make these decisions? What if I’m just plain tired and don’t want to deal with any of it? Why can't I just keep burying my head in the Rhode Island sand?

Wild child, Anna. 

Big boy, Jake. 

Our Bonnet Shores rental - perfect.

The ladies in the back of the Jeep. 

Fellow sailors.

Newport sunset cruise. 

Beautiful Buddha in the sand. 

Flowers bigger than my face at the Umbrella Factory - and I have a big Prednisone-swollen face. 

Perfect set-up. 

The whole gang on the last night. 

IVAC At-Home Recovery

Welcome, August. I’m proud to say I made it through July – barely, but I made it.

I’ve been home since last Thursday when I was deemed ready to leave my hospital bubble. This past week has been one of recovery and discovery of my limits and my capabilities.

There has been a whole lot of sleeping happening and resting in general, but also some actual summer fun mixed in. I refuse to be robbed of the entire experience of summer 2013, so I’ve done what I can with the incredible help of Craig and my mom and sister who have been here to nurse me back to health and keep me entertained so I don’t totally lose my shit focusing on what I’m facing at the moment.

I can’t say enough about how kind my husband is. Since the very beginning he has ensured that I keep normalcy in my life and knows what makes me happy and wants to make sure I do it. Even if I complain at the onset and say that I can’t, he pushes me just enough so that I don’t fall down the rabbit hole and disappear.

Incredible ladies

It’s very easy to push people away when I’m not feeling well, but he knows I always feel better when surrounded by the very, very special friends I have in my life (in balance with my much-needed alone time). With that in mind, this week we went to an outdoor Rolling Stones tribute concert with friends, had a few friends here in the evenings just to hang, had a date night of a delicious dinner in one of our favorite parks, and I had a girls night at my home where six of my closest friends since high school (or earlier) brought over tons of food and albums of old photos and we spent the night laughing and talking out on the porch under the summer stars until the mosquitos sent us indoors to continue there. It’s been a lovely and wonderful week.

I feel so very loved and so much more comfortable in allowing myself to talk more openly and honestly and to allow others to help me – whether by talking with me, bringing us food, sending adorable gifts and treats that brighten our days. I am much more accepting of those who want to spend time with me and help out because I realize that it’s not a burden to them  - they truly want to – and I truly appreciate them being in my life. I’ve also accepted those who are not there and realize that this is difficult for others to handle, too. Yes, it’s taken me being fantastically weak to get to this point socially, but I’ve been testing the boundaries and have been so pleased with how receptive and loving everyone has been – not that I ever doubted it, just that I was always scared and guarded. Right now I don’t really have a choice but to let it all hang out.

wooded beach

I’ve also been spending many days with my mom and my sister (who is home from out west to spend time with family for a while). My mom is beyond incredible and has always been. She swoops in and cleans my house, changes my sheets, helps me with paperwork, rubs my feet and calves with lotion, waits outside the bathroom door to make sure I don’t fall in the shower, escorts me to appointment after appointment, cooks for me, tucks me in, all while able to laugh and bitch right along with me about this crazy conundrum we find ourselves in.

My sister has been here to relax with me, watch over me, cook me food and just hang like sisters do. We don’t have to impress each other and it’s so nice to have her around. I can talk or not talk, fall asleep or be demanding and she's cool with it. As going to an actual ocean/beach would take way too much out of me, we spent one day together set up on a blanket, me under an umbrella, at a little pond beach in my town. It was so nice to be out enjoying some sun and summer breeze amid the pine trees. We made our own “beach” experience. She’s been so helpful and thoughtful in so many ways.

I just started driving again – short distances – for the first time in weeks and that feels good. Every day I am getting a little more strength. But it’s taken a while to get here and I’m still far from perfect. Tuesday marked three weeks since the start of IVAC. It is as brutal as they promised. Even since being home I have been so weak. I could barely walk up the stairs for the first few days and taking a shower and getting dressed was a big accomplishment for the day. I would need to go to bed afterward. The nausea has lingered and the fatigue is phenomenal. I really have to pace myself.

I barely have an appetite, but I do have overall body aches and some pain. Yes, in my damn hips. It’s nearly impossible to know if it’s pain from cell death, pain from the Hodgkin’s flaring despite the harsh treatment, pain from my bone marrow working hard after the Neupogen shots. I try so hard to stay in tune, but things are all over the place right now. But what I do know is that it is nowhere near the pain I was in pre-treatment and I’ve also still been remiss of high fevers, so this must mean something!

Same goes for the palpable lymph nodes in my neck, which I touch no less than 129 times a day. Some days I feel that they’re growing, others that they’re shrinking and even others that new ones are popping out. It’s certainly difficult not to let paranoia take over.

We’ve been watching my blood counts closely. My white cells are great – high in fact. My reds are low, but no more than usual. It’s my platelets that are lagging. At most recent check, they are 59,000. It is unsafe to do a second round of IVAC until I am closer to 100,000, especially knowing how low my platelet level dropped and how minimally effective transfusions were after the first round. If I don’t have enough reserve there could be life-threatening bleeding complications. Dr. Dailey and I also agreed that I should get my body stronger before more treatment. I’ll get my counts checked again tomorrow and we’re tentatively aiming at starting up Monday.

However, if I am having Hodgkin’s symptoms, then we need to strongly consider not doing another round of this. It would not be worth putting my body through that extreme toxicity again. It is very dangerous. We’re going to see how I feel.

In the meantime, we’ve been back and forth with the haplo-transplant team at Fred Hutchinson in Seattle. My parents, brother and I are all getting our HLA typing redone and having to get special bloodwork done to be sent back to them so that they can determine who of the three of them would be my strongest match. The doctors there are in touch with Dr. O and everyone is working so that if I do hit a remission and I do decide that I want to do a third transplant that all is ready to go as quickly as possible.

I haven’t gotten any closer to making that decision. I don’t think I’ll be able to until I see the results of my PET Scan post cycle 2. That’s going to reveal a whole lot. And, whatever way it goes, each scenario carries a whole lot of baggage. No evidence of disease? Great, but that leaves me with a huge decision to make. Do I go for transplant, which could potentially cure me despite the very real risks, or does it mean that I opt for much less toxic, novel therapies in clinical trial that will give me quality of life but we have no idea how much life if the remission starts to slip away. The chemo didn’t work? Does this mean it’s over? I was told if IVAC doesn’t work, nothing will work. Do I continue to pursue more trials if and when something opens that I haven’t tried already, or do I just focus on comfort and quality of life, spending time enjoying it instead of in and out of the hospital all the time? I’m predicting a pretty hellish time leading up to that scan and have no idea how I’ll stay sane. One test has the potential to seal my fate.

But before I deal with all of that, I first have to somehow gear up to knock myself down to zero again just when I’m getting a little glimpse of feeling better. It’s that old scenario of knowingly placing my palm on a hot burner. It will hurt. Isn’t this the definition of insanity? Banging your head on the wall continuously and expecting a different outcome? Well, this is one final bang, one big hopeful push that for once I will have a different outcome: instead of growth, retreat. 

IVAC Day 3 Update

I have been so moved by the comments left after my last two blogs. I am so touched and so in awe as to how we can all feel so connected by relating to each other through common human experience. When it comes down to it, I think we all just want to feel comfortable, loved and happy and I can't thank you enough for helping me to feel that in an incredible way even during these most difficult of times.

Thank you for letting me into your lives by following along with my journey. I so much enjoy hearing how it relates to your own experiences - cancer or otherwise and cannot tell you how much joy it brings to think that my words could help spark a little inspiration or perspective shift. What an amazing thing language and technology are to be able to connect us around the globe! Forever humbled.

I wanted to just give a quick update to say that I am three days into the inpatient chemotherapy IVAC at Hartford Hospital. I wouldn't say it's "fun," but there haven't been any big complications or reactions. I certainly know that I'm on chemo: bloated, swollen, achey joints, foggy headed, flushed, extremely fatigued, etc. I receive the Cytarabine twice a day, but only for a few days then I receive the Ifosfimide and Etoposide each evening in addition to a drug called Mesna to protect my bladder that I receive throughout the night.

Because Cytarabine can cause neurological issues, I have to do the steps of a drunk driving test before each dose and sign my name and prove I can walk normally. It can also come out in my tear,s so I need to put steroid eye drops in twice a day.

I may be having some of that expected urinary tract inflammation as I was in quite some pain this morning; we're monitoring that closely. I'm also a lot more tired today.

Fevers have calmed down, so we're hoping this is a sign that the drugs may already be working. I have also not had any pain breaking through my Fentanyl patches. These are big changes to when I was admitted on Wednesday absolutely drenched having broken a 103 degree fever on my way in and in severe, severe pain that they had to immediately get me on meds for. These may be two very good signs. But I'm also on Decadron steroids along with the chemo, which could be helping these symptoms as well so don't want to make any assumptions.

I am very comfortable here. I say it every time. The nursing and PCA staff are phenomenal. Plus, they have all treated me many times now and there's a lot of comfort in that. They gave me the "best room on the floor". It's private and large with a nice flat screen TV and a view out to a meditation garden.

The hospital recently changed their food options as well. Items are much healthier and less processed and you are able to order off a select menu vs. the two tired choices they would offer for each meal. I've been really impressed.

This whole thing is a six-day process. As long as I am doing okay then the schedule has me getting discharged on Sunday morning. It will be at home when the side effects will really set in. I'll be getting a shot here of pre-emptive Neulasta to kick up my WBC production as all three of these drugs are going to take a huge hit on my counts. It's expected that I'll be back to the clinic and maybe even hospital next week to get blood products or look into issues. I can expect to feel very weak and crummy, will have to be very careful around germs and all that jazz. I am also going to lose my hair again. I am beyond sad to say goodbye to my soft curls, but it's a small price to pay, I suppose.

I have family and friends to help and will need to rely on them to get me through these next couple of weeks.

When my blood counts do recover - probably at least two weeks, then the plan is to do a second and last IVAC cycle. We would not do more than that - too toxic.

In the meantime, we are working with the transplant coordinator at Fred Hutchinson in Seattle to get things moving on background testing, evaluations, testing of my parents and brother as potential donors so that things are in place should I hit a magic remission and should I decide I want to go that transplant route. Time will tell.

Right now, it's time for Mad Men, lunch and a nap.

For those of you who don't follow me on other social media outlets or through the HuffPo, here is a link to my latest piece: "Cancer Is Not All I Have." If you enjoy it, please share. You can "fan" me here and receive updates anytime I have a blog published there. 

Difficult Realities

Block Island crew (minus 1) enjoying a perfect day.

I realize I’ve been absent from blogging and thank you for the concerned comments. If I haven’t gotten back to messages, e-mails, text, please don’t take offense. Life has been focused highly on mere survival the past couple of weeks.

Yes, I did celebrate my 31^st birthday with a wonderful trip to Block Island with Craig and a fantastic group of fun people. After days of rain and storms, the skies opened for us to enjoy a lazy day of perusing the adorable island- the native trip for Craig and me.

That Monday previous was the first time I’ve ever lost control crying in a doctor’s office. My mom took me in for my second infusion of the VBM and when describing to Dr. Dailey the blinding pain I was in, I couldn’t even get the words out. All I could do was cry and my mom had to fill him in through her own teary eyes.

I got through the chemo in hopes that this pain was just a flare of disease being killed. The rest of the week got progressively worse in the pain department and what I needed for pain control was making me so tired and so woozy.  So was the chemo. So was the disease. I almost canceled on the weekend birthday trip, but pushed and was so glad I did. What was the difference if I was sitting at home on the couch in pain or sitting on an Adirondack chair overlooking the harbor in the sun? Luckily, the non-narcotic Toradol was holding my pain (an intense version of Aleve) so I was able to be clear-headed, but I had to come off of it after the weekend due to possible liver damage it can cause.

Everything got worse. I started having chills and fevers and my lymph nodes in my neck are only expanding by the day. Pain was getting out of control. My parents took me into NYC to see Dr. O at Columbia last Wednesday as he wanted to look at me in person after hearing my symptoms. He agreed with my instincts that the chemo wasn't doing anything. I should have felt some improvement. Instead, it was only making me feel like shit on top of shit by dropping my blood counts and making me even more weak and lethargic. We're discontinuing it. In looking at the long list of treatments that I've had, there's really no sustainable options left. 

He started talking about what a fighter I’ve been and what a trooper I’ve been to handle all of this and I just wanted the talking to stop. He said he’s never seen someone that VBM did not work in. I knew where the conversation was going. I was so tired, I felt like I was just staring at him feeling so defeated and simultaneously trying not to make eye contact with either one of my parents knowing that if I did I would burst into tears. The disease is getting too out of control and there are scant viable options left. This is coming from the doctor who flies to China, Germany, Switzerland, Italy to speak specifically about Hodgkin Lymphoma. His name is synonymous with research surrounding the disease and he has seen hundreds of difficult cases like mine. He is also an extremely positive doctor with so many creative solutions. Unfortunately, the strain of my disease is real fucking creative, too.

What he is suggesting as kind of a last-ditch option is a blast of a very toxic chemo regimen called IVAC. It has come up in the past as a kind of “save until the absolute end” option. I would need to receive it in the hospital over four days with constant monitoring. It will be very rough, I will get mouth sores and vomit and lose my hair again and there's a slight worry that I wouldn't bounce back from it. However, it can open some bridges for me.

Right now my tumor burden is too high to use any burgeoning, experimental drugs, Dr. O gently explained to me. Yes, they may go at the cancer in a different way, but they are not going to be effective against the high volume of cancer I have right now. They will not make me comfortable and out of pain. Basically, I need a chemo strong enough to match the disease right now or we're only going to be kicking pebbles and making my body weaker and maybe even ruling out those clinical trial drugs for the future when they would be more effective for maintenance. 

If I do not do the IVAC I will die from too much stress in my body. I can't continue like this. Even though I don't have disease involvement in or around major organs, my body eventually will just shut down with the continued stress response it has to be in to deal with the pain and tremendous inflammation. A recent blood test (Sed rate) came in at 143 mm/hour marking the inflammation in my body. It should be under 10. As Dr. Dailey explained to me, it is very difficult to know how long I would have - weeks? months? Before a “near-death” experience. The lymph nodes in my neck are so large that you can see them sticking out now.

Should I choose to do the IVAC (which would start as early as Tuesday), it could bridge me to the following things: 

a) There is one more chance at a cure and that is a second allo transplant. This one would be what's called a haploidentical transplant and would use one of my parents or my brother as a half-match. It is very risky and obviously would be very intense, as my first allo transplant was. I would do this at the nation's leading transplant center: Fred Hutchinson in Seattle. I've been in talks with a transplant doctor there who knows Dr. O (everyone does) about seeing what we can do at this point. The two of them have been in talks.

I have too much disease to do it at this point (which would be the purpose of the IVAC), but I don't even know if there's anything else that would affect me being an eligible candidate. We also don't know yet if there are any reasons that my parents or Michael (who would need to be at least a 50% match) would not qualify as donors. We have to get as much as possible in the works to see if this is even an option and to be ready so that when the IVAC gives me a near-remission, we can jump on it, fly my ass to Seattle and start up that whole process. Again, this choice would be a tremendous risk that I might not make it out alive from or that I would end up with permanent damage as a result of Graft vs. Host Disease. 

b) If it clears up a lot of my tumor burden, I can move onto less toxic clinical trial drugs with the intent of keeping things at bay. But if I do this I could lose the one opportunity from the one remission I ever get to get a cure from it. I'd continue with maintenance drugs as long as each one kept working and live out as much life as possible relying on continued scientific developments to come up with new things for me to try with hopefully a decent quality of life. There's no way of knowing how much time this would earn me. 

c) This will help me to make the decision of whether it is time to stop all of this. I'm told that if IVAC does not work then it's safe to assume that nothing in the world will work, again this is coming from the foremost expert in the world. We'll then know that these tumors are just treatment resistant and then I'll need to make a decision of what to do with that knowledge. At the least, I’ll know that I tried the harshest thing I could (in addition to four years of constant treatment and two stem cell transplants) and it didn't work and decide that now it's time to focus on the quality of the end of my life and on being comfortable - not more arbitrary treatments and hospitalizations. 

There have been a lot of tears among my parents, Craig, me, my doctors. I am mostly in disbelief and just so confused how this happened so fast. No, I am not ready to die. Even in pain, I still love my life. I'm faced with some really big decisions right now about how I can still try for some more time, and also how those decisions will effect what very likely could be my last few months of life. Do I want to spend it in intense treatment? Do I want to be far from home and again brought to the rawness that was some of my experiences with my first transplant? I'm very overwhelmed, very scared, so tired and very sad. I am not angry, just more confused than anything as to how this could happen so quickly but then again I guess I’ve been dodging bullets for a long time now. I've tried so hard and feel so defeated. How do I make the most of the life I have left? When do I say that enough treatment is enough and that it's time to just be comfortable and enjoy what remains. No one has a crystal ball.

I'm writing this from Hartford Hospital right now. I had to come into the ER because I was having fevers upward of 103 and they wanted to rule out infection. Plus, I was severely anemic and have already received two bags of blood. Dr. Dailey came over after his shift at the cancer center to talk with me. He too is concerned about how harsh the IVAC will be on me, but has a great amount of respect for Dr. O and trusts his instincts. He too talked about that if I don’t do this, then we’ll need to look at taking comfort care measures as there is nothing else for me right now. He thinks I should give it a shot and then I’ll know that I did everything that I could.

He talked candidly and softly and gently as he always does to my mom, Craig and me. While he was saying all of these serious things like how sad it would be for him and my family, but that they’d all support my decision, all I could think about was how severely I had to pee. I had called for a nurse to let me go several times. I was tethered to heart monitors and an immovable bag of blood. I thought that I would literally wet the bed while having one of the most important conversations of my life. I gave my mom the glaring eyes and whisper across the room and she knew to go out and try to recruit someone. Then, I finally had to just apologize to Dr. Dailey and say that I couldn’t concentrate. I had to pee so bad. He picked up the call button himself and said that there was a “bathroom problem” with his patient.

Finally, someone came and I had to stumble out of my own end-of-life meeting to the sweetest urination relief of my life. It was especially funny because it reminded us all of when Forrest Gump got to meet the president but had so many Dr. Peppers all he could say was “I gotta pee” when he got to him. I – who very rarely drinks soda – had fittingly sucked down a Cherry Dr. Pepper an hour before. The laugh took the sting out of things.

I’m on my second hospital overnight now. My fevers continue. It’s obvious that they are tumor fevers, but they need to wait for blood cultures to come back to confirm that and ensure I don’t have a blood infection. I just continually rotate between fevers and sweats. The two bags of blood helped a lot of with my energy and clarity and the extra steroids they’re giving me has kept my pain at bay. I should be going home in the morning.

However, if I go for this IVAC (I am leaning toward yes, after some mental prep) then I’ll be back in here on Tuesday to start and will be in for at least four days.

I am not giving up hope, but rather communicating the realities of the decisions we're faced with. I welcome miracles and assure you that we're staying positive. Just because I am writing this out doesn’t mean it’s going to go down this way. I’d welcome spontaneous healing with open arms. Please keep all the good juju, prayers, chants, visualizations coming that have gotten me through this far. I am forever grateful.

I am also so fortunate to have a husband and a family that are so respectful that these are my decisions to make for my life and for my body and that they will support me fully in whatever I choose. I know it is beyond difficult for them, but no matter what, they make me feel truly loved.

Same goes for my friends whose kind words as they found out about how real my situation just got have already done so much to heal my heart, which I thought was literally breaking.

I am by no means in this alone. I will have help and I will have comfort and I know that the love I already have all around me with only explode further as we walk down this precarious path together.

Thank you to all my blog readers for your continued support and positive messages of encouragement. Even when I can’t respond to them all, please know that they truly mean the world and help to fill my soul when I feel very helpless.

I’ll be searching my heart and my gut for some answers and when I make a decision, it will be the right one. I am confident in my instincts and the strength and the drive and the fire that I still have within me. I am the one with the power to direct that flame. Even if this is my time, I know that all who love me will never let that light die.

In Search of a Raft

Ducking out in the rain with Craig for some 

Thai food to celebrate his birthday between

a very hard-to-swallow doc appointment and

an always-enjoyably claustrophobic MRI. 

June doesn’t seem to be my month this year. Really 2013 in general hasn’t been treating me that well in terms of the whole cancer thang. Everything else in life has been wonderful, but the lymphoma has really been rearing its head far too much. Too many hospitalizations. Too many transfusions. Too many side effects. Too much pain. Too many appointments. Things have not been stable for over six months now, and the up and down is tough. I know I can’t stop the waves and I’m doing my best to ride them instead, but it is getting exhausting. I wish someone would throw me a freakin’ raft I could float on for a while.

Yes, it is confirmed that all of the pain and the fatigue I was having were indicative of cancer growth. I had a PET/CT Scan done of my full body and an MRI to take a close look at my pelvis and there is progression in old spots and new spots have developed. We have to give up on yet another treatment after just two cycles. Goodbye Gemzar. Hello VBM.

VBM is a combination of Vinblastine, Bleomycin, and Methotrexate. I have had both B and V in my frontline ABVD treatment and I’ve also had V as a single-agent therapy when trying to get into remission for my allo transplant. I have never had Methotrexate used as a chemotherapy agent. This is a pretty rough, intense regimen but one that is proven to work. Apparently it is very old school, something that was used before ABVD came to the forefront of Hodgkin Lymphoma therapy and kind of got forgotten about, though it had very good results.

My scans look pretty horrendous and my pain has been equally so. To get me out of this, we started up already with the new treatment. I had my first infusion on Monday after having my PET/CT Scan that morning. Craig had taken me in for an MRI the week prior that kicked this all off. It was how he got to spend his birthday. Then this Monday was a long day in the city for my mom and me. I vow to never again take the train home after receiving treatment. It was pretty unpleasant. The train was extra cold with A/C blasting and extra jostling. I was nauseous, then had a huge onset of pain and then an uncontrollable bout of chills. I wanted to get off the train so bad and cursed the entire 98-minutes. I tried to sleep or read but nothing worked. The last 20 minutes were sheer torture. Then it was still an hour-and-15-minute drive home, though it was much more comfortable to be in my mom’s car on the heated seat. I could barely muster the strength to get from the car to my living room couch.

The post-chemo feelings continue to today. I’m very lethargic, dry-mouthed, swollen feeling. The pain is pretty well controlled, but my stomach is very unhappy and my body pretty angry. If I let myself, I feel as if I could sleep for a week straight. But, I don’t. I’m determined to still be a functioning human being even while being back on very traditional chemo. The process is bringing back familiar feelings of my past and frankly, I hate it. This is not a long-term treatment, but again, trying something to get me out of the woods here. We have to stop this disease from growing and get rid of what’s there so that I can move onto a treatment that is more tolerable and will serve as maintenance to keep everything at bay. But right now it is just too dangerous to put me on anything that is an experimental therapy.

In the meantime, I’ve started the conversation with a transplant doctor at Fred Hutchinson Cancer Center in Seattle about the possibilities of a future second allo transplant so that if the time comes that I do get a remission from this regimen, I know what all of my options are for what to do with that remission. That whole thing is nauseating in itself to think about.

Last week/weekend I attended a writers’ conference at Wesleyan University where I was saturated with teachings about the craft and the business. It was a wonderful distraction and a good dose of much-needed inspiration. It was exhausting commuting back and forth for long days feeling like I was, but it was worth it. I need to have life balance of some sort even if that means pushing it when I barely can.

Also of note: Sunday we celebrated my dad in honor of Father’s Day and also marked my second transplantaversary. June 16, 2011, was the day that I received my sister’s stem cells and began the growth of my new immune system – my “rebirth,” so they say.  It also would have been my friend Steve’s 38^th birthday had HL not finally taken him far too soon. I cried a lot, for him, for his wife, for me and my family and thinking about what we’ve been through. I cried also because I’m so happy to still be here two years after such a traumatic experience. I cried because I’m still not cancer free and that I know there is a lot more to endure. The memories of it all are still very raw: both the ones that make me shudder and the ones that make me smile in triumph.

No, where I am at right now is certainly not ideal. I need a lot of help. But, I am here and that is what matters. I am doing my best to make the most of it and to not allow myself to fall into the pits of discouragement.

Sick or not, I still have to get groceries, cook meals, do laundry, pay bills, keep up our house, research treatments, keep on top of my medicine and appointment schedules. Sick or not, I still want to love on my husband, play with my dog, hang out with friends, spend time with my family, go out to dinners and breakfasts and see movies and plays, listen to poetry, read, write, go for walks and get back into yoga again. Thank goodness for those things or I don’t know where I’d be.

No matter how shitty I feel, the summer weather is still beautiful, the flowers striking, my love for those in my life stronger every day. This is what I tell myself to calm myself down when the fears get to be too much. I know we are teetering on the edge of no options. I’m not sure what the plan is if the disease doesn’t respond to this traditional regimen either. In truth, I am getting scared. I can’t do much else but cling desperately to hope.

In just a couple of weeks – June 29 – I’ll get to celebrate my 31^st birthday. 31. I couldn’t be more thrilled to keep reaching these milestones, though I do wish I could be running, not crawling, to them.  

A Complicated Relationship

Hope you enjoy reading my latest piece for The Huffington Post's Generation Why Series: "A Complicated Relationship." This essay personifies the cancer within me and focuses on the diseased relationship I have with this toxic lover that's got a stranglehold on me - the stuff of daytime television drama.

If it sounds familiar it's because it's born from a blog entry I wrote back in 2011, when recently out of my allogeneic stem cell transplant and learning what it was like to be in recovery, thinking that my cancer relationship was finally over. With this reworked piece, I honed in on our complicated relationship status and reworked it to focus on the continued stresses my lover brings.

As always, if you like it, please share it on your Facebook pages, "Like" it, Tweet it, comment here or on the Huffington Post page itself. I'd love to hear your thoughts! Thanks for reading.

Gemzar Cycle 2ish

I am two infusions into my second cycle of Gemcitabine. Today was supposed to be the last in the cycle, but it didn’t happen. Then again, there’s really no “supposed to” in my situation. I am far outside of any book regimens at this point. My doctors and I are just reacting and attacking, using my pain syndromes and my blood count levels as indicators of when we’re not using enough or hitting me with too much of the chemo drug.

We scaled down my dosage in the first cycle as my blood-clotting platelets were dipping dangerously low, disallowing me from getting the treatment as frequently as my doctors would want. Now, in this second cycle, my counts have been holding pretty well but I’ve had some bouts of wild pain set in, which makes them think that we need to whack a little harder. A little harder as in dialing up the amount of Gemcitabine I am receiving and also possibly adding in another drug: Navelbine to make sure that we are staying ahead of the lymphoma.

To my maybe not-so-secret delight, that change did not happen today. My platelet level was down to 50,000. It would be way too dangerous to treat me at that level knowing I’d drop even further and would very likely need a transfusion and be at risk for random acts of bleeding and all of that fun stuff. I get a bi-week. This works out wonderfully as I am hopping a train this weekend bound for Washington DC for some time with my college roomie. I couldn’t be happier that I’ll have no chemo symptoms to contend with (including the super swollen face look that I so adore.)

What I am having to contend with, however, is this on and off pain. It sneaks in like a jungle cat, all stealth-like, then wham – attack out of nowhere. It feels similar to having what I’d imagine the claws of a jaguar might feel like if they were scraping around in my sacral and hipbones. The nails dig in and then twist pulling all the muscles and tendons in around the pain that then emanates from that hot epicenter.

Heat helps. Pain patches help. Stretching helps. An increase in my steroid helps – though it’s incredibly frustrating to have to keep popping back up to higher doses of Prednisone (20mg currently) when I know all the side effects they come with. Even with these Band-Aids, sometimes the pain still breaks through and that’s when things really suck. A Dilaudid pill and sleep are really all that will help those times. I am grateful that it is not by any means constant and that I do have options with treating the pain syndrome.

There is no real certain way to know what is even causing the pain. My body could just be old and angry and arthritic, not at all unheard of for all the steroid breakdown my bones have probably endured, the battles going on within the bones, and how much work we’ve been asking my bone marrow to do for four years. It’s not necessarily that the cancer is growing, which is another reason why I wasn’t too keen on hitting it with more chemo today. I’d like to just ride this out a bit and see what happens over the next week. Maybe I just injured my lower back like any regular person. I mean, I was throwing kayaks around … . I kid. I was in on and off pain before that. The big reason I went kayaking was because I finally was having a pain-free day. 

What’s important is that it didn’t stop me from enjoying a weekend away with Craig, Sam Dog and longtime friends at one of their Vermont lake houses. Okay, maybe we had to delay it by a night as I waited for my pain meds to settle out, but that's what flexibility means. We made it, and it was complete with a fire pit and boat, dinghy and ATV rides, blended drinks, meat on the grill, and lots of laughs, reminiscing and catching up. Everything Memorial Day weekend should be. 

[Vermont] 

Up in the Clouds

As I do most mornings, I woke up far too early and lay in my bed for a while scrolling through my Facebook newsfeed until my body caught up with my mind and together we could roll out of bed. On several friends’ and organizations’ pages, I learned that Zach Sobiech died last night. He was a fellow young guy living with cancer – far younger than me. He was diagnosed at 14 and died at 18 from osteosarcoma, a bone cancer.

Maybe you heard his story already, but I felt compelled to share it because of how much he has moved my life. I learned about him when his now-viral YouTube video shared the online pages of Huffington Post’s Generation Why section with a story I had written.

His doctors had given him a year to live, and he made the decision that he wanted to spend that time with the people that he loved, at home, doing what he loved, which was songwriting and music. His song, “Clouds,” is a bit of a farewell, written knowing that the time he had left was short. Though what he sings about is tragically sad, its upbeat tone and positive lyrical spin demonstrate his zest and appreciation for life, as well as his peace with his impending death.

For anyone to reach that awareness is a beautiful gift, for it to happen for such a young man, even more so. His music video for "Clouds" went viral and a tribute was made back to him with several celebrities who were moved by his story and were filmed singing his song. I loved everything about this humble young man who made it known that the solution to happiness really is so simple.

This morning I watched a documentary about him,"My Last Days: Meet Zach Sobiech," created by SoulPancake. It is more than worth the 22-minute watch. Settle in and your life will be changed, too. Listen to what he has to say. I cried and cried all through it as I related on so many different levels. I cried because I am sad that he is gone far too young, but I also cried because I was so happy to know that he lived such a full life that he could be proud of, and at peace with, in spite of dying from disease. As they say at the end of the film, he touched so many lives not because he was dying, but because of the way he lived. That is beautiful and something I aspire to every day.

Learning of Zach’s death, and then more intimate details of his life, inspired me to seize my day. As he touches on in the documentary, I too, often live in the extremes: really good days and really bad days. I woke up pain-free and was determined that today would be a good day. I pushed my weak, little body – with barely any red blood cells – to get my kayak out of the shed from under the snow blowers and fertilizers and stand-up paddleboards, into the Jeep and onto the river.

It was the first time it’s been out this season and the first time I had ever kayaked without Craig to help me. Though it took a long time and a lot of effort to get everything together to get that boat in the water, I did it and I was proud. It was 85-degrees and sunny today. The river was so peaceful, and I couldn’t help but think that this total stranger’s spirit had helped to get me there – helped to give me the perspective to even believe that I could. Fear and excuses were washed away today and I just had to go.

The Jeep is full of mud, the shed a mess from my struggle, and I’ll be sore as hell from lifting and dragging the 50-pound kayak, but the self-satisfaction and the peace felt floating with the current was worth every effort.

Not including Zach, three people in my online cancer support world died in as many weeks: two from Hodgkin Lymphoma and another from bone cancer. It happens far too often, but that is my world, brutally aware of the realities of this disease. As much as it’s a punch to the gut every time, it also adds fuel to my own focus to not take this life for granted. I am still going strong and for every added day I’m given, I am so grateful and I try to live it in their honor.

Thanks for the song and your spirit, Zach.