Vinblastine Treatment 4

I'm feeling decent, though the Vinblastine single-agent chemotherapy that I'm on is pretty tough. The primary side effects have been fatigue, deep tissue aches, jaw pain and tightness, and neutropenia (very low white blood cell count/immunity). The drug is given through a short syringe my nurse injects into my port by push after my anti-nausea and steroid premeds are run. It’s incredible what affect such an innocent looking amount of medicine can do. I can’t let the dosage fool me; it packs a punch!

Scaling the wall 

The Vinblastine has done a number on my white blood cell count. The plan was to get weekly infusions, but my bone marrow has said otherwise. To give it some credit, I have been very heavily treated and my marrow is quite compromised. I’m proud to see that it has still been able to produce blood cells at all – for this I am grateful. I’ve never been unable to rise back to normal blood count levels with time or drug assistace.

To remain safe, my WBC count has to be at least 1,000 in order to receive treatment. It hasn't been able to stabilize quickly enough to endure the original, aggressive weekly plan, so I've been more on an biweekly treatment basis. My counts were too low to get treated last Wednesday (ANC 0.6), which is why I felt pretty good last week and this past weekend without the chemo effects. In fact, I felt good enough for a day of indoor rock climbing with Craig. It was our first time and something we both loved. I especially loved the sweet reward of getting to the top and the mental challenge it took to figure out how to get there. I had no problems beyond any normal climbing fatigue and a few battle bruises endured from banging my knees into the wall. It was an exhilarating, rewarding and gratifying experience. There will be more of these types of adventures to come for me in 2012.  

But back to treatment … . On the off-weeks, though I haven’t been getting infusions, I do receive Neupogen shots to stimulate my bone marrow and get me back into the safety zone. These are very tough on my body – something that is new since transplant. It's been explained to me that the medicine may cause more pain now because my new immune system may be more sensitive to it. The days following these shots have been utterly debilitating! The bone pain is horrendous – from the large bones of my hips and back to the smallest bones in my head and jaw. Dr. Dailey and I are going to try to avoid the shots this week, rather than giving them to try to force the possibility of another treatment next week. The hope is that my counts will recover on their own with a week off and we’ll just be satisfied with that schedule. Unless I drop below 0.5, I’ll escape the injection. Yesterday was my fourth Vinblastine infusion. One more is scheduled for two weeks from yesterday. Then we check in and see whatsa happening.  

A rash flare on my ankle/foot - GVHD?

The Graft vs Host Disease of my mouth continues, as do the steroid rinses, which keep it at bay so that it's really not bothersome, just strange and kinda gross. There has also been a new, exciting development – I've been developing rashes and welts on my skin. A rush visit to my transplant doctor last week revealed it's likely that this is a manifestation of GVHD as well. He did a skin biopsy on which I am awaiting results to find out if it is an auto-immune attack process happening. If it is, then that means it is likely my sister's immune system is also going after the lymphoma and hopefully giving me the desired Graft vs Lymphoma effect, which I went through the whole allo transplant process to achieve. 

Next big marker is a PET/CT Scan on Feb. 10. If it is looking clear then we likely will do nothing - fantastic, fantastic and hopeful news! I will come off my current chemo and we'll let my donor immune system continue to do its work. My doctors and I hope that we've been working the brakes and the gas correctly by balancing immune suppressing/lymphoma eradicating chemotherapy with increased action of my new immune system. The whole idea is to stay ahead of the lymphoma so that my new immune system has the chance to be able to catch up with and go after it.

If there is some disease reduction, but still some lymphoma present, then we may go forward with the Donor Lymphocyte Infusion of some more of my sister's cells. However, we'll have to weigh what the status of my GVHD is at that time as more of her lymphocytes might push me too far into the danger zone of severe or fatal Graft vs Host Disease manifestation.

Severe flare with welts on my hip flexor/stomach area

We are trying to avoid systematic steroid therapy and all of the side effects and long-term damage that can cause, and instead going for more targeted steroid therapy. In addition to the Dexamethasone mouth rinses, I now use a topical steroid cream for when rashes and hives enflame anywhere on my body, which has been happening about once a day now. These are totally manageable and treatable side effects, effects I am grateful to live with, especially knowing these they are likely a sign that I am moving closer to a cure.

Life outside of treatment has been pretty wonderful lately. I think that the dark cloud I was in has moved past. Cancer is really only a small piece of my life right now. I have so much more to write about and look forward to telling stories of my adventures outside of all of this – more entertaining writing to come this week! It can be difficult to rehash the realities, fears and goings on of my current therapies and cancer patient status. This is why much time has lapsed between posts lately. I often want to do anything but talk or write about what I’m going through. But, then I realize the importance of doing so in order to keep a log for myself, for those that love me and worry about me, and for all those other patients out there trying to navigate this crazy cancer world. This is bigger than myself and my own avoidance and laziness. So like it or not, I’ll keep the boring treatment update blogs coming – interspersed with some more fun and (hopefully) insightful posts as well.

Day +1 to Day +8 Recovery

It's been quite a ride. And I thought that I've already been on all the scary rides at the amusement park over this past year. Lots of ups and downs. Lots of gut checks. Lots of spins, confusion, weakness, chills, sweats, even some diarrhea and puking. It's actually been quite like continuous long days at Six Flags after too many spicy fries and soft serve cones combined with centrifugal rides that make you stick to the wall while the floor drops out from under you.

Last Thursday we moved down to New Haven into the hotel suite. It's pretty tight quarters but has a kitchen with all the amenities, a living area, and a super comfortable queen size bed. The night before I was literally on hands and knees trying to pack a suitcase with 15 days worth of things that I would need but so far somehow I didn't seem to miss anything. My mom had bought me a huge pill box with openings for morning, evening and bedtime for each day and counted out all the antibiotics and anti-nausea pills that I would need to be taking. The antibiotics are like horse pills and were especially a bear to get down due to my incredibly uncomfortable mouth. By Thursday I had no taste buds and my entire tongue and mouth was coated in a white film and it felt like I had a tube sock stuck in there. Never mind the nausea and gag reflexes kicking in when trying to take them, but I'd gotten them all down, knowing that if I couldn't get them down that I would have to be admitted as an inpatient and I was trying to avoid that at all costs.

Thursday's trip into the clinic went fine. Then it was the same drill on Friday. I got my blood work done then received a Neupogen shot to start boosting my white blood cells and two bags of fluids to keep me hydrated and keep my blood pressure up. On Friday we were there for several hours but it was beautiful out and Craig and I played cards out in the meditation garden until my IV pump ran out of battery and we had to head back in. Afterward I was feeling pretty strong. We went on a drive through New Haven, rented some movies for the week, and went to the beach where we laid out on a blanket and read in the evening sun. Back at the hotel my appetite was feeling better than it had in days so I had some Annie's mac and cheese with spinach and chicken sausage. We curled up to watch a movie and I was feeling "good" (a relative term, of course).

Then the clock struck midnight and all hell broke lose. I could literally feel my upper and lower intestines throbbing in pain and it was bathroom trip after bathroom trip doubled over with horrible diarrhea. They told me the Melaphan chemo drug would cause this but I never imagined it to be that bad. I was up all night transferring from fetal position on the bed to hunched on the toilet. By 8am when we had to head to the clinic I was incredibly weak, still in a lot of pain, and unaware if things were going to act up again. Every movement was so cautious, Craig comparing me to a 97-year-old woman and that's really what I felt like.

We rolled in and they tried to put me in one of the chemo pods but I told them that I needed a room with my own bathroom and explained the night. I was sent t0 the far end of the hall. Being a Saturday it was bare bones staff and Craig and I sat in there for nearly 45 minutes before anyone came to get me started, check on me or put a pillowcase on the pillow. Finally our call bell was answered and we came to realize that this would just be the day of hellish care. Note to self: try not to feel awful on the weekend shifts. When the nurse finally came I told her that I was having wicked back and stomach pain and about the night 'o diarrhea. Because of that she called the on-call fellow - also not much help. Then luckily Dr. Cooper swept in.

At this point I was downright weapy, all teary-eyed and choked up because I just felt so, so shitty. I told him that I'm usually really tough and I was just feeling awful. I couldn't help the hot tears from streaming down my face and had to keep wiping them away with a tissue. I was running a temp of 100.1 and because it was still so early in the morning he said it was safe to assume that it would only rise throughout the day and made the decision to admit me and get me on IV antibiotics. Though I certainly did not want to be back in the hospital again, I knew it was the best, and the safest thing to bring out the heavy antibiotic guns and to be monitored at all times.

So the preparation for admission ensued. While in the clinic they took blood cultures to test for any bacterial infections. Most could be pulled from my port but some have to come from a peripheral vein in my arm in case the infection was in my port itself. This took two nurses on their knees, three vein pokes and an arm that was about to explode they tied the tunicate so tight and had to leave it on so long because my vein was only dribbling. I was just so tired that it was all I could do to breathe deeply as my eyes continued to well.

I was then admitted to the solid tumors floor as that was the first bed to open up. There I received two units of red blood cells and four units of platelets. My nurse was nothing short of a nightmare. I've had wonderful, wonderful nurses, mediocre and some doozies but never one like this. I was so out of it, but luckily coherent and smart enough to know to advocate for myself. It was one thing after another after another that just wasn't going right with her. Dr. Cooper came up to see me and when I got all teary and told him that she wouldn't hook me up to fluids flippantly saying that I didn't need them and that I had to convince her to recheck the orders to see that in fact I do need Benadryl before platelets. Hearing all of this he stood up chest puffed out like an ape and he ripped his paper gown off like Clark Kent revealing his Superman undersuit and went into the hall to find her. I'm pretty sure he reamed her a new one because when she came back later she asked me: "What was that doctor's name?" The next morning he made sure that I was transferred to the 11th floor which is devoted to blood cancers and I've been here ever since.

I really wish that I was up to writing over this past week but I just could not get the strength. And anytime I got close to it someone would come in to put me through something. It's not easy to keep a creative flow going here. But I guess it's also just a testament to how awful, awful I was feeling. Looking back on Sunday through today it's all a big blur. Maybe it's better to remember it that way. It's been a blur of all different antibiotics throughout the day and night by mouth and by drip, daily Neupogen shots that burn like hell, blood transfusions, magnesium and potassium transfusions. A blur of constant vitals checks, blood draws, chest x-rays, blood cultures, physical exams and the dreary eyed desire for an uninterrupted night's sleep. A physical blur of throat sore pain, vomiting, diarrhea, aches, and extreme weakness.

The worst of all has been the fevers which have continued since I was admitted on Saturday. Anywhere from 100.1 up to 103.2, never going below 99. Each would start with violent, shaking, teeth chattering chills. Despite wrapping myself in several blankets I could not warm up and could not stop shaking. They would give me Tylenol and all I could do was curl up in bed and ride out the chills until the fever broke and I was soaked in sweat. The hunt has been for the cause of the fevers to make sure I don't have any type of bacterial or viral infection. This is why they've been drawing so many blood cultures and I also have had to endure swabs up every orifice. So far, everything continues to come back negative.

I've never been bored. Not for a second. In fact I wish that I had more time to read or sleep or catch up on miscellaneous projects but again the energy or gusto was completely zapped. I've had either my parents or Craig here for a few hours each day with Craig coming for a couple hours after work each evening before he goes back to sleep at the hotel and commute the hour to work. We've watched movies together and my parents even brought bright garden streamers to decorate the room. But often it has been them watching me half-sleep.

All started to turn around on Tuesday and has been doing so turner for the brighter with each day. Until I come out of neutropenia and I stop having these fevers they will keep me here. What's helpful to keep in mind is that I am here to heal, not here to receive more toxic drugs. This means that when I do get released it'll be just to continue along the recovery path. This time once I start to feel close to myself again it won't mean that it's time for more chemo. It'll mean that I can keep the healing going.

In the Business of Making Stem Cells

Good news is that I no longer need the third round of ICE chemotherapy that we had originally been planning for. Because my "b" symptoms have subsided, there are no palpable lymph nodes, and I've bounced back well from the first two rounds it was decided between Dr. Dailey and my new oncologist down at Yale, Dr. Cooper, that we should go ahead into the stem cell transplant. It was explained to me that there is a delicate balance between giving not enough and giving too much chemo. Since I received the extra chemo administered in the pediatric regimen, I've gotten nearly as much as an adult would in three cycles. This should have effectively put me in remission. They don't want to give me too much more of this chemo at the risk of wiping out my bone marrow's capability to produce new cells. This makes me ecstatic as it means that I may never have to be an inpatient again!

So, here we are. This week I have been in the bone-wrenching business that is making stem cells. Starting Monday I have had a double-dose shot of Neupogen every day and I'll be continuing those shots through Sunday. The Neupogen is forcing my bone marrow to create great amounts of stem cells - so much so that they'll be pushed out of my marrow and into my bloodstream so that they can be fished out. I get the shots in the back of the arm. They don't hurt - just burn some as the drug is going in, but really not bad at all. I'm used to them as I would receive them during my ABVD chemo treatments, though this is twice the amount per shot so that means twice the amount of burning. I also thought it would mean twice the amount of bone pain as my marrow is being worked so hard, but that really hasn't been the case. Every once in a while I'll feel whopping pain in my back and in my hips mostly, but I'm able to kick it with a couple of Extra Strength Tylenol. I haven't had to fill the vicodin prescriptions I've been holding onto. However, driving to the cancer center every day for the shot has gotten old. I have never been able to leisurely sleep in since all of this is started. Every day there is some kind of appointment that I need to get to. But, you do what you have to do and that's it.

On Monday I need to be at Yale New Haven Hospital's Smilow Cancer Center at 7:15 a.m. for what is hopefully my first day of stem cell collection, pending my cell amounts are high enough. The next order of business will be to asses my veins and see if they are viable enough to use for the collection procedure. Otherwise, I'll have to have another type of catheter inserted in my chest, which they will do with local anesthesia that morning. Then I will be hooked up to the apheresis machine which will pull out my blood, snatch out the stem cells, and put the filtered blood back in. I'll come back and do this for however many days it takes until they have enough for them to store and freeze for later use. After that comes the scary, high-dose chemo and then the re-transplant of those stem cells I collected pre-chemo. These cells will help to rebuild my bone marrow and immune system which the chemo will have wiped out completely. To be blunt, without the stem cell rescue, the chemo would kill me.

Over the last several days I've had myriad of emotions starting from total fear and dread to where I am now, which is again focused on getting myself strong and ready to kick ass. I've had much blood work done to be sent down to Yale and have had to fill out lots of paperwork and read over consent forms, the most disheartening being the "Consent to Receive High-Dose Therapy with Stem Cell Rescue for the Treatment of Hodgkin's Disease." This document is a doozy and what sent me into a mild anxiety attack on Sunday. Basically, it's full disclosure of all the possible side effects that could occur, it gives some harsh statistics and numbers, and talks about the risk factors, which include leaving me susceptible to future cancers like untreatable leukemias.

But I have a lot going for me and I like to think that I'm not the "typical" patient. Overall, I did really well with the ICE chemotherapy and Dr. Dailey tells me that many of his patients who go through the stem cell transplant procedure find the ICE to be more difficult than the BEAM chemotherapy that I have to come. I'm hoping that this is the case for me. I am strong. I have been walking every day but the 3 dead-to-the-world post-chemo days, have been working out with exercise bands and doing yoga at home as I'm not allowed around the germs a studio would contain. I've been eating well - lots of organic and whole foods, and my blood cells have also made a good showing with time. Right now, my white blood cells are again so low that I'm neutropenic and am again on prophylactic antibiotics, but that's to be expected, and I'm 1 point higher than what I dropped to after the first ICE round. Tomorrow I'll find out if I need a blood transfusion to get me up to the required levels before I can go through with Monday's procedure.

To balance out the medical jargon, I've found it most helpful to talk with real people that have gone through this. It's helpful to hear that there's a light at the end of the tunnel and that the whole process really isn't that bad. Today I spoke to Ethan Zohn, the winner of "Survivor Africa." He's in his thirties and went through chemo for Hodgkin's Lymphoma, relapsed quickly, and was back in for ICE chemo followed by a stem cell transplant. I've been following his path all along as he was diagnosed in 2009 just a couple months ahead of me. I was connected with him through my friend Jack at the I'm Too Young for This! Cancer Foundation.

Talking with Ethan certainly helped to quell a lot of my fears and helped to reinforce my beliefs in a lot of mechanisms that I've been using to get through everything I've been through so far. He is also a big advocate of exercise, yoga, visualizations, meditating, and diet and gave me a lot of tips for how turning to them helped him get through his transplant. He told me how there were days that he wasn't able to eat hardly anything because of the nausea but that he would force himself to at least drink a shake or a smoothie to get something in and also was devout about downing lots of fluids. He also told me how important it was for him to get up and move/exercise every day even while in isolation. Some days that meant just getting the motivation to get to the shower, but when he was feeling a little stronger he had exercise bands and weights that he brought with him, would do yoga stretches, etc. and swears that this made such a difference for him. I'll be packing them in my bag as well.

He told me that he wouldn't kid me, that it's not going to be easy, but that it's manageable and you get through it. He told me not to be shy, not to try to be a hero, and to ask for what I need when I need it. He told me that I have science on my side and assured me that within 30 days he was back at the gym and walking outside and that he's feeling stronger and that he's there at any time if I have any questions. This is what I'm talking about when I'm talking about being part of this great cancer community.

During his treatments Ethan recorded video blogs for People.com. Here are links to a couple that I found helpful:

• His stem cell harvesting day (this will be me on Monday) - it helps me to visualize what this apheresis machine is all about
• Post-stem cell transplant interview with Ethan and his girlfriend, Jenna Morasca, winner of Survivor: Amazon - in this one he mentions that his journey with Hodgkin's was the most difficult thing he went through in his life - harder than being a contestant on Survivor, Eco Challenge and running an ultra marathon.