Generally speaking today was going well until … I took a shower and all of my hair fell out! Just like that, it all fell out, no easing into it, just massive clumps of hair. I was really okay with it. I’m ready to try something new, again But that’s not the bad part of the day. The bad part is that the University Network is now blocking me from getting on Skype saying that they do not support that kind of “internet telephony” application. I wrote them a fairly emotional email explaining that I am the mother of two young children on a unit that does not allow children to visit and my only way of visually communicating them during my one-month stay is over Skype! If/when they respond, I would also like an explanation for why I only have access to the internet for 10-15 minute intervals randomly throughout the day. How could they not understand how critical it is for patients to have access to the outside world? Especially to their families?

At least I can talk to them on the phone. That is the only saving grace. They did get to see me briefly tonight before things got cut off. So they got to see my hair which is a hot mess right now. I am proud to say that Ty thought I looked like a rock star It should all be gone tomorrow, but for now I have stripes of hair and baldness going from the front of my head to the back. Sort of like 3 Mohawks. Very odd, but interesting. There’s no salvaging anything. And like I said, I’m really not that upset about. it My bigger concern is keeping my eyebrows and lashes. I kept those through my first two chemos but lost them on the third. When you have the wig on and you still have your own brows and lashes, it’s really not that noticeable that anything is different. But if I lose my lashes, the fake lashes were dreadful and my little lashes are basically white blond so there’s just nothing there. Fortunately they grow in fairly quickly – and I won’t be going anywhere anyways. My focus all along has been that I will make my big debut back to life in late spring, probably May sometime. That would be the soonest I might be cleared of a mask and by that time my hair will have grown in enough that it just looks like a really short cut.

Alright, enough about my hair. In the TMI/Gory Details department I haven’t gone to the bathroom in 3 days. Feeling pretty gross. I’m downing the laxatives and dinner tonight was high fiber cereal followed by a bean burrito. Apparently my pain killer has this effect. Heather, I hope you’re happy that I’m sharing. Only for you my friend!

I got a little run in on the treadmill today and then did my light and easy ride on the bike. I downloaded Tina Fey’s Bossypants book and it is hilarious. It’s a fun way to pass the time.

Well it’s bedtime for me. Did I mention my doctor came to visit me a second time this afternoon? I thought something was wrong but he was just stopping by to see how I was feeling. He really is awesome. I feel like he’s another gift on this whole journey. Someone who is genuinely interested in taking care of me. How lucky am I?

Alright, I’m drifting off hoping for a Christmas miracle  keeping my eyelashes. A special thank you to my support team in Montreal. Much love and appreciation! Good night everyone!

Well it hasn’t been the best couple of days. I am at the very bottom with my counts (0.1!) and I am dealing with a lot of zero-white cell issues. The biggest issue is my sore throat. It makes it very hard to swallow so they have changed all of my medications to IV and my diet is pretty limited to mush and Ensures. As usual we tried Dilaudid for the pain in the throat and my head followed by the nausea medication that knocks and me out and there goes Jessica for all of Saturday. By the evening we were able to work out a system that wasn’t completely knocking me out or giving me nausea but comfortably taking away the pain.

There was actually good news yesterday too. The doctor who will be my doctor when I leave the hospital is on rounds right now, so I got to meet him finally and, as several people had told me, he is awesome. He is incredibly thorough and clearly has a strong sense of what works and what doesn’t. After examining me, he immediately put me on two new antibiotics to assure that my throat issue doesn’t turn into any kind of infection, he lowered my dose of the immune suppressing drug that is giving me headaches and he had them start me on neupogen. That is the injection that I get in the stomach that boosts my immune production. On my chart I was supposed to start it on Thursday, but the doctor that was on call at the time decided that I didn’t need it – who knows why? Dr. Yanovich, my doctor now, basically rolled his eyes and implied it should have been started. I don’t think he was happy about some of the decisions that have been made for me along the way. I’m not dwelling on any of that now, I am just grateful that he has taken over my care. So I’m on the neupogen shots now and in the next day or so my counts should start to come up. Despite my low white count, my platelets have held really well after the transfusion and all of my other counts are still within acceptable ranges. My red count is at the low end of the spectrum and that is contributing to some of the fatigue.

I woke up feeling better this morning and thought I would get up and go for a walk but then fell back asleep until almost 11. During that time, they started me on a steroid that the doctor thought would help with the nauseu. Well I woke up and felt 100% normal again. No headaches, no fatigue, no dizziness – I felt awesome. Apparently that is the effect of the steroid. I’ll gladly take a good side effect for a change!

My friend Kim, from Ulman Fund, came to visit today and brought along a Team Fight member who is another young adult cancer survivor. She had been diagnosed with stage 3 Hodgkins Lymphoma when she as 8 months pregnant with her first child! She had the baby and immediately started 7 months of chemo and then radiation. She is in remission now and went on to have a second child even though they told her it might not be possible. It was very inspirational to meet her. This is never the kind of club I wanted to be part of, but Ulman Fund has done incredible things to bring young adult cancer survivors together in a way that keeps all of us feeling strong and inspired.

Okay, so now for some sad news – my hair started falling out I’m not shaving my head or cutting anything yet. I’m still remaining hopeful that it might just thin a little. It’s not the worst thing ever, I was just really hoping that I wouldn’t have to go through this part of it again. Let’s all just keep our fingers-crossed and focus some good healing vibes on my hair

Of course my hair is just a little thing in this big picture. Most important is my health and healing and right now the doctors are very happy with how things are going. My new doctor as well as several other doctors and nurses have said that if things stay on course, I will be home for Christmas! Hair or no hair, if I can get home for Christmas I will literally be the happiest girl in the world. I just want to be able to give that as a gift to my children more than anything.

In other news I am making some progress on one of my books and I finished all of my Christmas cards. So all in all, I have managed to be productive somehow.

Latest food craving: croissants … and I don’t know why.

I am happy to report that today ended up being much better than yesterday. No headaches and I made it out of bed! I also showered, ate real food and got some exercise in – all a huge improvement over the last few hours. In more good news, I got a platelet transfusion that actually bumped my platelets from 17,000 up to 39,000, wahoo!!! That’s a good sign because it means my lovely new cells are starting to kick into gear and produce on their own. Any day now my white count should start going up. Hopefully tomorrow.

I was pretty bummed to have missed both of the kids holiday shows today, but I look forward to seeing video. I’m also trying not to dwell on what I’m missing and focus more on what I’ll be here for in the future.

Okay, off to bed for me. More tomorrow …

The last couple of days are beginning to blur together. And yesterday may have been the worst day I’ve had so far – right up there with the liver infection. I’ve been having really bad headaches and nothing has been able to relieve the pain. I opted to go for the Dilaudid again and that helped a little, but of course left me in la-la land. On top of that they decided to give me platelets because my count was at 20,000 in the morning, which is the cutoff point. So they doped me up on IV Benedryl and did the transfusion. I tried to be optimistic about it, but politely warned them that it would most likely drop my count rather than raise it and we might be better off not doing it. Unfortunately, I was right and it dropped my platelets to 14,000.

In the midst of all of this, my headache was becoming a throbbing migraine and I did a couple of doses of Dilaudid. I could not get out of bed. Everytime I moved my head throbbed or the room spun and I couldn’t keep anything down. Even water was making me vomit. Once again we went to the heavy duty nausea medication. It had been several hours since I had gotten sick, so my night nurse decided to try a different pain medication that she thought would bypass some of the nausea side-effects. But as soon as the pill got down my throat, I got sick all over again. All I can say is that nurses are true saints. After holding the bucket for me to puke in, she went and got lotion to rub my feet to try to relax me. She then went and got an IV bag of Dilaudid, which meant that the medicine could be slowly dripped into me, rather than pushed through my IV line. That seemed to do the trick for the night and I am happy to report that I successfully ate a scoop of scrambled eggs, a bowl of corn flakes and a bowl of raisin bran this morning.

The doctors are inclined to think that the one medication is still the culprit for the headaches, but it takes several days of making adjustments and taking bloodwork to figure out just the right level. I’m sure I was also completely dehydrated yesterday so when they finally put me on IV fluids, I think that helped. I also wonder if my mental state the day before – feeling anxious, a little depressed, etc. – contributed to the headaches. In a way I feel like I hit the bottom and now that’s past me and we go up from here.

My poor friends Kelli and Robyn came down yesterday and got to witness all of this. I felt terrible that they made the drive and then had to leave so soon. Around here, you just never know how the day is going to go until it happens.

I hear that they are planning to try platelets again today. My goal is to get out of bed and take a shower! I would love to be able to walk around a little bit too. What I can tell you is that as bad as yesterday was, the one thing that did help was meditation and music. I’ve downloaded some really beautiful, relaxing music (think about what you would hear while you’re getting a massage) and I’ve been using what I’ve learned from the guided imagery CD to help me focus on things other than the pain. It doesn’t always take the pain away completely, but it makes managing it much easier. Our minds are very powerful things.

Well I’m eagerly awaiting the count report for the morning. I’m feeling better than yesterday and I’m watching Mickey’s Clubhouse which reminds me of being at home with the kids in the morning. I feel like it’s going to be a better day, darn it! I’ll write again later with an update.

I’m posting early tonight because I’m not feeling 100% today and will probably go to bed early. My white count is down to 0.4, the same as it was yesterday. I am eager to see where it is tomorrow because it could either go lower, stabilize at this point or begin working its way up. Obviously I’m hoping for things to start going up because the longer it is down, the more susceptible I am to all kinds of craziness. My platelets are at 28,000 which is still decent for this timeframe.

I have felt okay most of the day but my temperature went up slightly this afternoon and I’m having some chills. It would be normal for me to run a fever, particularly when my counts start to come up. But I have a natural inclination to fear fevers ever since my liver infection. The hardest part of all of this is keeping yourself mentally in the game and not letting the fears creep in. When you don’t feel good, it’s almost like losing part of your defense mechanism. I know this is all part of the process and, as a good friend reminded me, I need to stay focused on those long-term visions when things get tough.

I was also really missing the kids today. I was working on my Christmas cards and the nurses were commenting on how beautiful the kids were and then one of them got very serious and said, “you know I really pray for you that this all works because your kids needs you.” Well, I basically lost it after that. Of course she meant it in the kindest way, as I know that everyone does. I am blessed to have so many people care about me and sending me love and prayers. It does mean the world to me, but what I want more than anything is just to hug my kids and I can’t do that right now. I want to tell THEM that everything will be okay, and I can’t do that. I feel like when I let debt slip in or get scared, rather than staying strong, I am failing them. But sometimes I just want to cry and be hugged and not be so supergirl-ish.

Okay, meltdown over. I just miss my home and my family and I’m dealing with all of the memories of having gone through this before. For whatever reason, this is the journey I’m on. It would just be so much easier if the internet worked here so that I could at least have an uninterrupted conversation with my kids!

Update (20 minutes later): I just watched the news and saw two horrible stories. One was a woman whose husband killed both her young kids and the other was about a woman in New York who was crushed to death by an elevator that malfunctioned. It was a blatant reminder that no matter how bad your day feels, there are people who have it a lot worse off. No matter how hard this feels, right now I have what matters most: hope.