When the Cancer Hits the Fan

I’m officially done with chemo! I got out of the hospital on Saturday afternoon, and was so exhausted I hardly had the energy to feel relieved. Now that I have had a few days to rest and process, it is starting to hit me. I’M DONE!! No more hospital stays, no more feeling like crap – no more chemo! Obviously, it will be a while before I am back to my old self, but I am now on the road to recovery. Now it is time to work on rebuilding my strength, living a healthy lifestyle (hello exercise and salads, goodbye lying on the couch all day and eating nothing but carbs),and enjoying myself. I have a lot of fun to catch up on from the last six months, so bring on the summer socializing!

I want to say thank you again to all of our friends, family, neighbors, coworkers and strangers who helped us get through this. All the visits, texts, emails, meals, cards, gifts, financial contributions, dog walks, thoughts/prayers, and other contributions really did help every single day. I would like to especially thank our families for helping with Bea, driving me to my treatments, staying with me at the hospital and providing Tom and I all the support we needed. When the cancer hits the fan, you know how truly blessed you are.

In other news, my hair is starting to grow back, and the peach fuzz is BLOND! I’m sure it will get darker, but in the meantime maybe I will find out if blonds really do have more fun. I can’t wait until it grows in enough that I can sport the GI Jane look. Now if I could just figure out how to rush the process of reducing the facial swelling I would be a happy camper

All Dreased Up and Nowhere to Go

I was supposed to go into the hospital for my final inpatient treatment tomorrow. I would not say I was looking forward to it, but I was looking forward to it being behind me. One more thing checked off the list, one step closer to getting back to normal. Unfortunately, my white counts are too low, so my oncologist decided to delay treatment for a week to give my body a chance to rebound.

I know it is for my own safety, and in the grand scheme of things, one week more will make no difference at all, but I can’t help but feel disappointed that things are delayed again. These last few weeks have tested my patience, my resolve, and my determination. As in most things, I am fighting against myself. I know all I have to do is say the word and all this could be over.  I don’t have to do anymore chemo, in fact, my oncologist would probably be relieved if I stopped, but I just can’t. I have to know that I have done everything I possibly can to beat this cancer now. 

So I will wait, and probably complain to everyone around me for the next 7 days, and then in two weeks this will all be behind me. 

4 More Weeks

 It is with mixed emotions that I share the news that I am going to do 4 more weeks of chemo. Tom and I met with my oncologist on Thursday, and even though he is worried about side effects, I decided I want to complete the protocol and do 4 more weeks of treatment. Two more inpatient and two more outpatient, and I will be done with cancer.

I dread the treatments, and the probable side effects that are coming, but I need to know that I did everything possible to decrease the odds of the cancer coming back, and if the cancer does come back, I need to know it isn’t because I didn’t finish out the last few cycles.  I survived 4 months of chemo, I can survive 4 more weeks. 

This past week I have been feeling pretty good. I worked three and a half days, took Bea to daycare, made dinner after work, and hung out with Tom after Bea went to bed. It has been a little taste of my old life, and I can hardly wait for the next 4 weeks to be over so I can get back to it for good. I am so blessed to have wonderful family and friends, a loving husband, a beautiful daughter, a job I love, and so many other things to be thankful for. I just need to get through the next four weeks and then the rest of life awaits.

Kindness and an Update

Update:

I have not had any chemo for over two weeks now. My body just couldn’t take any more. My kidneys were not doing their job, and my electrolytes got so out of balance that I passed out in the outpatient clinic and ended up in the hospital for four days. The good news is, I’m now on a million supplements, but have stabilized. The bad news is the supplements are making me nauseous pretty much all day and night. Ironically, I have felt sicker in the past two weeks since I have been off chemo than I did the whole time I was on chemo. I’m working with my doctor today to try and change out some of the supplements to try to get out from under the nausea, so cross your fingers for me! 

The big question right now is whether or not I will get any more chemo. My doctor thinks that the risks to my obviously exhausted body probably out weigh the benefits at this point. I only had 2 cycles left, and because I spent so long with HCG levels just slightly higher than normal, my doctor says I have already had more chemo than the average person following this treatment protocol. I must admit, the thought of being done is amazing. I can’t wait to feel better and move on with my life. On the other hand, the protocol is the protocol for a reason, and deviating from it makes me nervous. No decisions have been made yet, and my HCG is holding steady at less than 2, even with no chemo, which is a good sign. 

 A Story of Kindness:

Last Thursday I stopped at the Safeway near Kaiser on my way into the infusion center. I didn’t realize that I dropped my wallet in the parking lot. I got to the infusion center and was hooked up to an IV. A Facebook message popped up on my phone from someone I didn’t know. I assumed it was spam and almost didn’t look at it, but for some reason, I decided to open it. It was from a woman named Terri who found my wallet and used Facebook to track me down. After some back and forth, she insisted on bringing my wallet back to me at Kaiser. We then continued to text, she read my story on my Facebook page, and expressed her well wishes for a full recovery, and offered her prayers and to help me in any way she could. Also, I didn’t realize until early the next day, but she tucked some cash and a nice note into my wallet.

This simple kindness of returning my wallet and reaching out to offer help really touched me. It reminded me yet again how wonderful people can be. Last week was a very difficult week for me, and Terri’s kindness not only saved me the hassle and stress of dealing with a lost wallet, but reminded me just how much I have to be greatful for, just when I needed it! Angels come in many forms! 

Puking Like a College Girl after her First Frat Party

I have not written in quite a while because I don’t want to complain, especially when there is so much good happening, but all I feel like doing is throwing myself a puking pity party.

Let’s start with the good to remind myself how much good there really is. 

The Good:

• At last check (last week), my HCG was below 2! 2 or lower is the standard cut off for a non pregnant, non cancer having person, which feels AMAZING!! Fingers crossed that my results come back tomorrow with similar, or even lower results. 
• I’m back at work part time, with a very flexible schedule. I’m tentatively working Monday – Friday 9-1. Being back at work makes me feel more like my old self, and is helping pass the these last few weeks of treatment more quickly. I am so appreciative of my work for working through this with me. I am truly blessed to be part of the Cagwin & Dorward family!
• I have only 4 weeks of treatment to go. 2 more inpatient (next one starts tomorrow) and 2 more outpatient, and that really does feel like a light at the end of the tunnel. I can get through anything knowing that there are only 4 more weeks! 
• I’m currently not as scared about the unknown of my long term prognosis. I’m not sure if I am just getting more used to the idea, getting better at focusing on one day at a time, or if getting the news that my HCG is below 2 had big mental impact, but I’m mentally in a good place right now. I’m sure everything will shift again as I transition out of the active treatment phase, but for now, I’m enjoying the peace. 
• My support team – Tom, my parents, my sister, Ken, Christina, Pameala and the numerous other friends and family members who do everything from drop by to visit to check in with texts and emails. Seriously, I couldn’t do this without you. At the beginning, it was helpful and fun to have lots of family and friends around to pass the time, but as I get more fatigued, your strength and good cheer is what is getting me through.

The Bad:

• The chemo is kicking my butt! Everyone said it would get harder as time went on, and boy were they right! I’m exhausted, and worst of all constantly nauseous. At any given time I’m on 3 – 5 different anti-nausea medications, and I still puke 2 – 3 times per day. I pretty much eat only plain pasta, rice, toast and other white foods. If I keep this up much longer, I’m going to end up with scurvy! The nausea is much worse in the evening, which is good for working, but difficult for family life and my poor husband. Right when it is time to feed Bea dinner, and get dinner ourselves, I start feeling pretty crappy. 
• 4 More weeks can sometimes seem like it is going to take forever. I know if is just a drop in the bucket compared to the months and months of treatment, but the saying, “so close, and yet so far” has never held more meaning. I ache to feel normal again. I’m trying to stay focused on how lucky I am that my disease is curable, and I have to opportunity to go back to my normal life, but some days I loose track of that. 

Writing it all out helps, look how much more good than bad there is?

 I’m almost done, I can do this, I’m almost done! 

Feeling Blue

Hospital stays are always hard for me, but I have been especially emotional today. I have found myself on the verge of tears many times, for no apparent reason. Nothing much has changed with my prognosis or treatment plan, except that my doctor reset the 8 week count down due to a slight variation in my HCG level last week. My current last day of chemo is April 6th. Two extra weeks of chemo – really no big deal in the grand scheme of things, and certainly not enough to turn me into a crying mess after everything I have been through over the last few months. 

Maybe it is the changes in hormones, the boardom, having too much time on my hands to think, or some combination of it all. Maybe I am finally grieving for the life I used to have. I’m still bound and determined to beat this and get on with my life, but I think it is just hitting me in the last few weeks that even when this is over, it won’t really be over – at least not for a long time. There are years of waiting for test results, worrying and fear ahead of me, and it just isn’t fair. I have tried really hard not to play the “it isn’t fair” game, because as we all know, life isn’t fair. But in my weaker moments, I feel sorry for myself and pissed off at the world that this happened to me. 

I want desperately for someone to be able to say to me that all I have to do is get through the end next 8 weeks, and I will be fine. I’m not even done with the initial treatment, and I’m already afraid that the cancer is going to come back, how am I going to make it through the next 5 years? I know that with time, and a few months of good test results, I will begin to relax, but I’m not looking forward to getting from here to there.  

One thing is for sure, all this idle time on my hands is doing me no good at all. I can’t get back to work and a more structured life fast enough. I can remember countless times since having my daughter where I just wanted an hour or two to myself to read a book or binge watch a crappy tv show, while as someone who just spent the last 4 hours watching Top Chef America, it gets old really fast. I need to work on filling the next 8 weeks with a little more fun and a little less cancer. So, if you have time on your hands, especially on a Monday or Tuesday (usually the days I feel the best), call me up. Let’s go to a movie, get pedicures, go to the city, or the beach. April 6th can’t come fast enough! 

Final Countdown – 7 Weeks to go

There is good news on the cancer front. On Wednesday, my HCG was at 6, which according my my oncologist is below the threshold to start the final 8 weeks of treatment. Why the change from the target of 2 to 6, I’m not sure, but I’ll take it! I am thrilled to be in this final stage of treatment, and to have an end date (3/23 assuming everything goes according to plan). I can’t wait to feel good again and get back to my normal life!

While the relief I feel is palpable, I was surprised that the progression into the next stage of treatment also has brought a great deal of fear and anxiety. I have become comfortable with my chemo routine, and did a pretty good job of not thinking too much about the future while in active treatment. Now, we are at the beginning stages of the next phase, which will involve lots of monitoring to make sure the cancer is not coming back. 

I know that the monitoring, like the treatment itself, will become routine in time, but right now, the thought of living with nearly constant testing feels like I will always be waiting for the other shoe to drop. I broke my “don’t google it rule” and read some general  information about remission and recurrence, and it scared the crap out of me! Just a few cells left over after treatment can remain undetected for years, and then come back with a vengeance. I know that treatments are very good, choriocarcinoma has a high cure rate, and I have faith that I will be cured and move on with my life, but it doesn’t mean that I don’t find myself thinking about the “what ifs” it in the middle of the night. It almost makes me want to beg for a few extra rounds of chemo, just to be sure…. Which I never in my wildest dreams thought I would want or ask for.

For now, I need to stay focused on getting through the next 7 weeks of treatment and all the joy that will come with getting on with the rest of my life. 3 more hospital stays and 4 more outpatient weeks… Look out cancer cells, I’m coming for each and every last one of you!! 

A Week Off

Hello friends, sorry for the long gap between posts. I have been feeling pretty under the weather lately, and I didn’t want to write another post about side effects and how crappy I feel all the time. And honestly I just didn’t have the mental energy to process my thoughts and write them down.

Anyway, let’s start with the good news…. Unless something changes drastically, I will not need radiation. No radiation means avoiding all the risks and side effects that come along with it, and my total treatment time will be shorter. I’m extremely relieved! I feel like I dodged a giant bullet. 

Also, my HCG level is down to 9 (read more about what that means in this post). It feels like a painfully slow grind the last few weeks to get down to 2, but it is going in the right direction. I hope to be at 2 or under in the next week or so, which means I will have 8 more weeks of treatment and then I will be DONE. Just typing those words makes me tear up. I will be able to start counting down the treatments and hospital stays, and the end will be not only in sight, but have a specific date! 

The bad news is my white blood cell and platelet counts dipped a little too low this week so my doctor decided to give me the week off from chemo. Initially, I was disappointed because the whole process is now going to take a week longer, but after a few days, an amazing thing happened… I started to feel much better. I no longer need to sleep 4 – 6 hours per day and 10-12 hours at night, I have not puked in days, I have the energy to tidy up the house, go to the grocery store, and play with Bea… I can even do all of those things on the same day!  

I didn’t realize just how bad I felt, and how depressed I was about it, until I started to feel better. I was mentally, physically, and emotionally exhausted, and feeling like the cancer was kicking my ass instead of the other way around. 

A week off was just what the doctor ordered, and I’m trying to enjoy every minute of it!

Side Effects and Good News

Sorry for my lack of posts my friends. I thought another random thoughts post would be a quick way to catch you up with everything going on, but it turns out all of my random thoughts are about chemo side effects.

• Down for the count: This last hospital stay and round of Chemo really knocked me out. Many people told me that as the chemo continued I wouldn’t bounce back as quickly – and unfortunately that seems to be true. After my previous hospital stays I would be discharged on Saturday, and feel like myself again by Monday. This time, I slept almost all day Sunday and Monday, and didn’t feel human again until Tuesday… Just in time for my outpatient treatment on Wednesday.  My initial response was to fight against the fatigue, to get up and make myself do something, but I came to my senses and now realize that my body needs to rest. 
• Mouth sores: The chemo I receive in the hospital also gives me terrible mouth sores. The mouth sores make eating a painful experience, but if I don’t eat, the nausea is significantly worse, and obviously the fatigue gets worse too. Of corse, the things that are most painful to eat are raw fruits and vegetables, the thing I should probably be eating the most of. The sores last about 7 – 10 days post hospital stay, and get gradually better over time, so with being admitted every 2 weeks, it feels like the sores are my constant companions. My solution was to buy a fancy new blender (arrived yesterday), and I can eat a lot of green smoothies and purred vegetable soups in those first few days home from the hospital.
• Unexpected Side Effects: There have been some changes in my hearing lately. I have been experiencing some mild ringing in my ears, and some noises, like the clanging noises associated with unloading the dishwasher, have been louder than normal. I mentioned this to my oncologist, and he ordered a hearing test. Apparently, one of the chemo drugs I am on is causing perminant hearing loss. At this time, it is just in the very upper range of my hearing, outside the range of human voices, but the longer the chemo continues, the worse it could get. So another reason to hope my numbers continue to drop quickly!
• My least favorite side effect: Surprisingly, I can deal with the hair loss, and even the mouth sores and fatigue with a fairly good attitude, but the side effect that bothers me the most every time I look in the mirror is the facial swelling. It don’t like that it bothers me so much. I know it is caused by the medication I am on, and that it will go back to normal soon, but I find myself deliberately avoiding mirrors so I don’t have to see what I really look like. It is the one side effect that I can’t minimize for the rest of the world, and it makes me feel very self consious.
• Good News: My HCG level is now down to 54. I have more blood work this Tuesday, so cross your fingers for me, We are looking for a level of less than 2.! I’m trying not to get my hopes up for this week, but I can’t help myself! 

Happy New Year!

Happy 2016! I am half way through my hospital stay, and starting 2016 with good news! My HCG level (a marker for my cancer) is down from 379,000 to 98! As I have written before, the doctors are very happy with how fast the number is dropping, and it is the main factor that will be used to determine how long my treatment lasts. So, long story short, this is a big deal. I feel very hopeful that I am leaving the cancer, or at least most of it, in 2015! 2016 is all about getting healthy again.

2015 was a challenging year.  It brought some major life changes, including getting used to being a parent, adjusting to going back to work after having a baby, and of course, the biggest surprise of all, cancer. It has not been all bad, but I can’t say I’m sad to see it go. 

Generally I start the year with a few health related resolutions, usually eating healthier, loosing a few pounds and making more time to exercise. I usually stick with them for a few months, and then loose focus as I get busy with other things. This year, I have two resolutions:

1. Beat cancer! This one is self explanatory, and will probably be the only New Year’s resolution that is completely non negotiable for me to keep. I will be 100% successful at this one! 
2. Pay it forward. Tom and Bea and I have been the recipients of so much love, kindness and support from friends, family, and complete strangers. It has truly been a life changing experience. I want to be the source of that kindness, help and support to friends and family that need it going forward.  

If I can accomplish those two things, I will be one happy camper. I’m looking forward to a happy and healthy 2016!