Category Archives: Good Health

It’s a new year and, hot dog, it’s gonna be a good one!!!

Well hello there. It has been a while. I hope that everyone had fabulous holidays and a smashing new year! Cameron and I were lucky enough to host my grandparents and mom for Thanksgiving as well as spend much of the holiday season with friends and family. We also spent our first Christmas in our new house with Wrex-a-million (Christmas card will be posted shortly). But 2011 been an interesting year so far…

I will try to get you up to speed with the Erin-tale. It’s amazing how much can happen in five months! Perhaps that is why savvy bloggers update weekly or monthly instead of bi-anually. Anyway, last I posted I still had 8 radiation treatments to go. I am happy to say that I made it through those treatments without any issues. I was so relieved to have that sci-fi experience behind me and six weeks of cancer vacation ahead of me. The six weeks flew by and I was regaining strength and energy at a steady pace. I was feeling so good that when I went in for my follow-up scans, I didn’t expect anything but good news.

Unfortunately that was not the case. Apparently the area that was in the radiation zone was cancer free but somehow the cancer had spread to other areas in the liver, lungs and lymph.

BAAAAMMM!!! Smack, right in the face! You have got to be kidding me!!! How is that even possible? I was taking oral chemo while on radiation. Now that sh*t is all over the place. Aaaarrrrggggg!

So after many tears and long, exaggerated words my family and I pulled ourselves together to discuss the game plan. My new chemo regimen, GemCis, would be administered once a week for two weeks and then I would have a week off. So that is what I did. Chemo. Again.

The side effects were not to bad and my amazing team of alternative practitioners kept me pretty comfy. This regimen came with me into the new year but I was optimistic that it would be worth it.

Then…two weeks ago my oncologist set up a CT scan so that we could check the status of the tumor with the new chemo cocktail. My mom, dad, Cameron and I piled into my oncologists office this past Wednesday only to hear that the tumors in my liver have grown even more. So much for that cocktail…

I am due to start yet another chemo regimen, Fol-fox, tomorrow. The super fun part about this chemo is that I have four hours of infusion and then I have a portable chemo dispensing fanny pack attached to me for two more days (expect photos from my fanny pack photo shoot). On the up side, I only have to go in every other week for four doses. Then we will reassess.

Now you are all caught up. I apologize for my prolonged absence from the blogging realm. I hope that I didn’t cause any of you undue stress or worry. I am going to do my best to keep this blog up to date but if for some reason I fall behind, know that I can be a slacker and/or a procrastinator 🙂

Be well!

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8 has never seemed like such a large number…

Hello Everyone!

I’m sorry that I haven’t done a better job at keeping you all updated. As it turns out, radiation is not super fun. Hmm. I was coasting through the first couple of weeks without any significant side-effects. Then around week 4 things started to catch up with me. My energy level has plummeted, which frustrates the HECK out of me. I hate not being able to do anything except go to treatment and then come home and remain horizontal for the rest of the day. Although I do have an awesome “laying-around-on-the-floor” buddy. Wrex is starting to think I am sack of potatoes cleverly dressed as a woman in pajamas. So he sniffs me, lays his head on me for a while and then plops down next to me. We really are a match made in heaven…until papa Cameron gets home, that is. It must be something about the testosterone levels because as soon as Cameron walks through the door Wrex has no interest in me whatsoever. It’s pretty hilarious! Man’s best friend… isn’t that what they say?

So, radiation. Blarg! I only have eight treatments left, eight, but it still feels like so many. The last eight treatments are called a “booster” in the biz. It is the same dosage of radiation but the area that is being treated is a little bit smaller. They will be focusing mostly on my liver and less on the biliary tree. The techs have told me that I shouldn’t notice too much of a difference and at this point I just want to make it through the next week and a half. I have been having sporadic fevers the past couple of weeks that could either be my body burning off dead cancer cells (!) or an infection brewing because of my stent 😦    We are hoping for option A obviously but it is really difficult to actually know what is going on.

So I am going to ask all of you powerful people to continue sending my family and I good thoughts. I know that you have been doing this for so long and I truly believe that your prayers and happy thoughts have carried me this far. I am so close, even though it feels so far away, and knowing that you all are out there and are thinking of me is what gets me through each day.

Thank you as always for all that you do!

xoxo,

Erin

My boys!

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3 down…30 to go!

Radiation treatment began this week. So far I have completed three treatments and I have also started my daily regimen of oral chemo. The first day was scary but once again I had my rockin’ support team to help get me through it! I consider myself so lucky to have such selfless, thoughtful, loving people in my life. Simone has been my best friend since the seventh grade and she journeyed from San Francisco to be with me for this first week of treatment. So not only do I have my amazing husband and family at my side, along with all of your support, I get to have a slobbering dog and my BFF here to hold my hand and keep me smiling! I truly am a blessed woman.

Radiation treatment is not at all what I expected. It takes place in this huge, cold room adorned with sci-fi looking lasers and computer screens. I lay on a platform in this weird body caste that was molded to fit my upper half. Then the technicians come in and line up my tattoos (don’t worry dad, these tattoos are tiny little dots on my abdomen not a portrait of Cameron’s face on my shoulder-blade!) with these lasers that align my body in the exact same position every time. Then this crazy machine circles the platform 360 degrees, stopping every couple of inches to project the radiation onto carefully calculated places on my abdomen. I don’t feel anything while this is happening but it is still kind of creepy…

In an attempt to stay positive during treatment I have taken to visualizing Calvin from Calvin & Hobbes zapping my cancer cells as if they were aliens from the planet Zorg. Do you remember those cartoons? Calvin is usually at school daydreaming about being a space hero, slaying aliens with his laser gun. Usually the alien turns out to be his teacher. Well, in my visualization Calvin is in my bile ducts and he is obliterating all of the malignant cells to smithereens!! It keeps me entertained for the 20-30 minutes that I am on the table.

The side effects haven’t been too noticeable yet. I have been tired and slightly queasy, which is to be expected. Today I had the tech’s turn the satellite radio to the Oldies station. That always makes me happy and seems to pass the time!

Thank you to all of you who keep tabs on me. I know that so many of you are praying and sending us your well wishes. You are amazing and you are definitely a driving force that keeps me going even when I want to run away and hide. I couldn’t do this without you…truly.

xoxo

Here is Simone and I in the waiting room on the first day of treatment. We were pretending that we were in line at Disneyland waiting to get on Space Mountain! That is way more fun!

And here is Rex-A-Million, the Best Dog Ever!!

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Quick Update

I now have an official start day for radiation: July 6th. Cameron and I met with my radiologist this week and he is very optimistic about this treatment. He has worked with several cholangiocarcinoma patients and has had “stellar” results. Radiation will last for six and half weeks. I will go in everyday Monday through Friday for 20-30 minute sessions. I will also be taking an oral form of chemo during radiation. The word on the streets is that chemo and radiation work exponentially better when used together. So we are going to give it a whirl! I have been told that most people tolerate this radiation/chemo cocktail fairly well. The most intense side-effect is fatigue, which is cumulative over the course of the treatment. There may be some nausea, mouth-sores and other slight irritations to handle but all-in-all I think that I will be able to handle it swimmingly!

I had another CAT scan recently as well. Everything is stabilized, which is good. The tumor is still isolated, mostly to the bile ducts. Because of my recent bout of cholangitis (from the PSC, when my bile ducts get clogged), I have increased inflammation in the area. The inflamed tissue looks a lot like the soft tissue of the tumor so it is difficult to tell what is what. The actual size of the tumor was measured a couple of milimeters larger than it was previously but I was reassured that that is primarily because of the inflammation and not a signal that the tumor is growing.

I have to admit that I was slightly bummed that the tumor didn’t shrink. Stability is a good thing, though, and I am so grateful for it.

On a more upbeat note-  Rex the dog is doing very well! He is adjusting well to his crazy owners and even starting to eat his delicious duck and potato food! He had his first vet visit last week and passed his Doggie Wellness exam with flying colors. We do have to collect some of his stool to test for parasites- that is a job for daddy Cameron!

Be well!

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Last Day of Chemo!!

So last Monday, May 3rd, was my fourth and final dose of chemotherapy (at least this form of chemo). Sarah accompanied me and took these photos to document the treatment along with my visit to the acupuncturist following chemo. I have been lucky enough to receive acupuncture directly after chemo and it has helped tremendously with the side-effects. I immediately feel the nausea dissipate, as well as the general flu-like symptoms. The infusion room where I receive chemo is actually quite nice. I have a view of the Willamette River and the tram going up to OHSU. The nurses there are very friendly and do their best to make us comfortable for our six-hour visit.

Sarah and I chatted with a couple sitting next to us at one point during my treatment. Matt and Brenda have many years of experience with cancer. Matt has had stage 4 brain cancer for over two years and has gone through chemo and radiation. Matt and Brenda have four children ranging from toddlers to teens and they are all home schooled! I couldn’t believe it. These two people were so happy and upbeat about everything in their lives. They teased each other and shared stories that were so genuine and filled with love. Brenda made a comment about adapting to what life brings you and learning to make the best of it. I am still torn by this idea. Of course one strives to be grateful for everyday they are given and make lemonade out of lemons. But I still find myself resisting the idea that this…cancer, chemo, radiation… will redefine my life from here on out. It is obviously a huge part of my life right now but I cannot accept the fact that it will always be this way. I don’t know if that makes me stubborn and naive or a fighter. I am guessing a little of both and I can live with that!

I am due to start radiation therapy the first full week of June. Radiation will be everyday for six weeks and will be complimented by an oral dose of a different type of chemo. Apparently radiation and chemo are exponentially for powerful when used together. The most significant side-effect of the radiation is fatigue. The fatigue is cumulative and will be more intense as the weeks pass. The radiation doctors have said that the treatment is usually tolerated fairly well and they are optimistic that it will be extremely beneficial for me. Let’s keep our fingers crossed!

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