Wednesday, July 24, 2013

IVAC Cycle 1 Hospital Recovery

Goodbye sweet, curly ringlets. 
It is now Wednesday, July 24. I have been in the hospital for a week. That’s after being in the hospital for six days the previous week. I’ve been in the hospital something like 16 out of the last 20 days. But, my run will hopefully be ending tomorrow. As long as I can get through the night without any fevers and nothing moves backward in my bloodwork results, then I am going home tomorrow.

This truly is where I needed to be. In the very beginning I was so depressed, upset that I couldn’t do anything more than lie in bed and Craig said to me: “You’re in a cocoon right now. This is what you’re supposed to be doing.” And that’s what it was. I’ve been in a cocoon receiving the support, supplements, care and monitoring to bring me back to stability so that I could emerge a butterfly (completely metaphorically – I am far from a dainty, colorful butterfly right now.)

I will go home tomorrow and I will have one week to enjoy a little summer. Then, next Wednesday I am back in for a second cycle of IVAC. This time we will reduce the doses I receive of the drugs so that it is not so harsh on me. I can expect that I’ll probably have to return to the hospital after the six days of inpatient therapy to once again cocoon in a safe place.

IVAC Cycle 1 Recovery Highlights:

-Every day but two I received a blood product: sometimes red blood cells, sometimes platelets, sometimes both. Thank you blood donors.

-Though I was getting daily platelet transfusions, they just weren’t sticking. It was starting to get unnerving when every morning’s bloodwork would reveal numbers like 5 and 6 (norm is 143) despite having received a whole bag the night prior.

-It was just as discouraging to keep hearing my white cell numbers being read at “0” or “less than 0.1” day after day – no movement. This put me in the "neutropenic" category, which meant that I had essentially no immune system. With that comes lots of restrictions: no fresh flowers, no fresh vegetables, no fresh fruit, no takeout. 

Lips swelling, throat closing, mildly concerning. 
-I kept running low-grade fevers, so they ran every kind of test and blood culture imaginable. Everything came back negative, though they had me seen by the infectious diseases team and kept me on broad spectrum IV antibiotics just in case. I think it’s safe to assume now that they were just the neutropenic fevers that happen when the body’s disease fighting white cells are super low.

-I had an incredible allergic reaction to a bag of platelets. My body became covered in hives, all my skin became red and raised, my upper lip swelled with a bulge on its inside, the back of my throat swelled and I felt as if I would scratch my entire skin off my body the itch was so intense. My sweet, sweet nurse stayed with me and talked me down as she injected more and more Benadryl, on top of the Benadryl I had already been pre-treated with. It seemed to take forever for the reaction to fade and I admit I was very scared. If I didn’t have Susan with me to talk me through it I probably would have lost it.

-To prevent reactions the next day, I was pumped with extra IV Benadryl, super Tylenol and Pepcid. I avoided reaction but didn’t see the rest of the day. Obviously, with all of this Benadryl surrounding daily transfusions, most days were spent doing a whole lot of sleeping it off.

-I was able to leave the room with a mask on, so got some laps in around the floor. I also got two free massages and a Reiki session.

Handfuls of hair. 
-All of my hair fell out. On Saturday night, my follicles died and let it all go. I ran my fingers through my hair and would come back with handfuls. Of course, once I discovered this, I couldn’t stop touching it. I sat in my bed, not crying, just staring blankly into space as for the fourth time I watched my hair tumble out of my head. For a few hours I wrapped it around my fingers and pulled out chunks, made ponytails that would fall right out and ran my hands from front to back coming away with fingers wrapped in dark curls. The beautiful curls I had just had reshaped with a $50 haircut. I filled a teacup with all of the hair I yanked then had to force myself to stop by tying my headband over what remained and called for Ativan to force me to fall asleep. The next day, Craig brought his hair clippers and finished the deal for me. For the fourth time, I am now bald and look like a very identifiable cancer patient. It’s disheartening. Nothing to hide behind now.

Frothy tea, anyone? I realize I am disgusting.

-I got through 13 days in the hospital, including days receiving severely strong chemo, without vomiting, nor really any nausea to speak of. Today, the first day I’m not even hooked up to the IV pole – no antibiotics, no fluids, no blood products and I get hit with a huge bout of nausea. As fast as my nurse ran, the IV Zofran didn’t make it in time and she had the pleasure of wiping me down with a cool cloth as I wretched into the standard Pepto pink bucket – my absolute favorite. The nausea hung out for the rest of the evening.

What Got Me Through It:
-nurses that went absolutely above and beyond. We shared a lot of laughs and a lot of tender moments. I always felt safe and so well cared for. I could relax knowing I was in good hands. Same goes for the Patient Care Associates who were always there to bring me whatever I needed, to make my bed nice and tight, and after being here so long they knew exactly what I wanted at my bedside when I woke up and could anticipate my schedule.  I didn’t have one bad experience or clash.

-the mac and cheese, which was actually decent

-Mindless TV: Jimmy Fallon, Ellen, House Hunters International, anything Kardashians

-piles of blankets

-lots of family time with my parents, sister, brother and sister-in-law, even though I slept through a lot of it

-visits by my sweet, sweet friends full of laughs and stories from the outside world

-Craig’s nightly visits after work when we’d catch up on our days, trying to recreate what we have at home.

-FaceTimeing with Sammy Dog and seeing the pictures our teenage neighbor would text us of her while she was taking care of her.  

-Netflix movies

-A nice window view overlooking a gazebo and garden

-naps, naps and more naps

-laps around the floor with my IV pole (Jinx)

-Facebook/Pinterest/Twitter – more stalking than commenting.

-dumb magazines

-reading the cards and opening the packages Craig would bring from home that people sent

-All the e-mails and texts of encouragement, jokes, check-ins just to see how I was doing

My cancer pain is gone. My high fevers and night sweats have stopped. My palpable lymph nodes feel smaller. Let’s hope these all are good signs.

I’m ready as hell to leave tomorrow, but I believe everything worked out as it needed to. I’m once again safe to be in the “real world.” Being gentle with myself and keeping what my body has been through in mind, I plan to take full advantage of this week of freedom while I build back up and drink in the fresh air at every opportunity.

Thursday, July 18, 2013


I was released from the hospital on Sunday. I was able to remain home until Wednesday afternoon when I was sent back to the hospital, where I still am. Everyone keeps saying it’s “where I need to be.” I understand this and guess I agree, but that doesn’t make it easier being in here.

My days at home were rough. I was very weak, lethargic, alternating from nauseous to hungry to not knowing what I wanted. I’d go from fevers to sweats to clamminess. Every tissue in my body hurt. It was obvious that the chemo was ravaging through me. I could barely walk up and down the stairs. My mouth began to fill with thrush and ulcers. I was not in any shape to take care of myself.

Craig took care of me on the weekend and in the evenings and my mom or sister or a combination of during the days. On Wednesday my mom and dad came together to take care of me.  I was scheduled to go into the clinic for bloodwork, but I knew before getting there that things would be very low. I woke up with dotted bruises along my arms and my stomach and even around my eyes, indicative of low platelet count (the blood cells responsible for clotting). I now know that’s called petechiae.

I could barely stand getting to the clinic in Avon. They pricked my finger and ran my blood through the machine. My counts barely registered. I am very neutropenic, meaning no immune system. My white blood cells are 0.1 and the machine couldn’t even calibrate the breakdown of types of cells within that. My absolute neutrophil count was unreadable.

Most concerning was that – as suspected – my platelet count was only 6 K/uL. People are supposed to fall within the 140-440 K/uL range. Transfusions are usually done around 12.

Dr. Dailey didn’t want me walking around like that and didn’t like the low and high temperatures I was having, nor the symptoms I was describing. I got a direct admission back to the cancer floor I had come from just three days earlier.  I’m still here and probably will be for a few more days. Despite having received the bone marrow-stimulating shot of Neulasta on Monday, my white cells haven’t started climbing yet. I’m on broad-spectrum antibiotic just in case there is an underlying infection. I’ve already received a bag of platelets and am right now waiting on a bag of red cells. I guess this is like a tune-up. However, they really don’t want to let me go until my white cells start trending upward and it’s tough to know how long that will be.

I’m wiped out for sure. But I signed up for this. I knew it was going to be hard. I guess it’s hard to imagine how hard it would get and it’s hard to remember that I’ve been this low before and I have come out of it. My doctors told me before we started that it was very likely I’d be back in the hospital after not too long receiving blood products and rebuilding while being monitored. No one sugar coated this for me, I just hoped I was going to slide through a little easier. 

Thursday, July 11, 2013

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. 

Tuesday, July 9, 2013

Giving IVAC a Shot

I am in the hospital starting the IVAC chemotherapy today. In the simplest terms, I'm doing it because I'm not done yet. I hope with everything in me that this will be strong enough to take down the disease and am visualizing hard that it will. I am prepared that it will take me down with it for a bit, too, but am confident that as I've bounced back up before, I will again.

I am touched beyond belief by the outpouring of support I've received since my last blog post. I am one incredibly fortunate woman. Thank you for all your positivity and love.

Here we go ... .

Saturday, July 6, 2013

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 31st 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.