Lucy in the Sky with Diamonds

I desperately miss writing and apologize for not giving any updates and being so way behind on getting back to emails and messages. Things have been very difficult. I was in the hospital for 5 days last week. Extreme pain and the need for more blood products brought me in. I had severe pain over Labor Day weekend in my knees and my ankles, so bad that I could not walk. The nights were awful. Poor Craig had to deal with my screaming, crying anxiety attacks as I tried to handle the pain. I’d have Craig get me heat, then ice, then stack my legs on pillows, try to straighten them in front of me. Nothing worked.

While in the hospital, the goal was to titrate the pain medicine so that we had a good balance between the woozy side effects of the pain meds and keeping the pain under control. I’m home now and we’re not there yet. Today was very difficult. I felt sloshed and so weak. I puked last night after trying to get together my nighttime routine, then puked up a decent amount of OJ this morning after all the exertion of bringing my laptop, foods, and meds out onto the porch so I could enjoy some sun.

Everyone is very worried about me and wants me to accept more help and keep in better touch, but honestly, to send a text message or answer a phone call is so much work. I fall asleep and drop my phone while trying to reply all the time. I can spend extended amounts of time just staring into space and I hate it so much. I need to find some clarity. Obviously this amount of pain medication is too much but I’m so afraid of the level of pain if I come down.

My family and friends have been incredible whether it’s taking me to the hospital, visiting me in the hospital, or Craig and my mom being right there to get me whatever I need and make sure that I am comfortable.

My platelets are still very low, hanging around 10,000. Because of this, I am not able to continue on CEP oral chemo right now. I need to be at least 75,000 to take it. However, I am still able to take the Rituxan as it is a targeted antibody vs. traditional chemo and should not affect my blood counts. I got my second transfusion on Friday. I’m putting a lot of hope in this drug as I don’t know where else to turn.  Again, thank you for the supportive emails and comments. I look forward to when my head is clear again and I can get back to the craft that brings me so much happiness. Right now however, it takes me 20 minutes to write a short text message, so there won’t be any eloquent prose coming from this girl. In fact, I’m dictating this to Craig right now. 

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 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.

Boomerang

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.