Disappointment, Setbacks, And A New Plan

Up until now, I have sailed through chemotherapy and remained reasonably healthy. I have given the credit to my regimen of supplements, good nutrition (when I can eat), hash oil, acupuncture, massage, and so on. I really do believe those things have supported my health along the way. Further proof of this is the knowledge that many start to experience complications by cycle 3 and I’ve made it to cycle 5 before experiencing a drop in white and red blood cells.

Last week when my labs came back I was sent home because my white blood cells were too low. I was given a week off in order to give my bone marrow enough time to generate new cells. I had my transfusion last Friday, which really helped with my red blood cell counts and my blood pressure. Side note – today my blood pressure was up to 116/72 – awesome! When my doctor walked in to the room today I was kind of taken aback when he told me my white blood cells were still just below the acceptable number. I had expected to get back on schedule today and this news really took the wind out of my sails, so to speak.

He told me that the new plan was to give me my 3 week cycle of chemo all at once, instead of spreading it out, and that I was going to have to have the white blood cell booster shot. Let’s talk about this shot for a minute. It costs $5000 and jump starts your bone marrow to create more white blood cells. I had decided I wasn’t going to have the shot unless absolutely necessary because the major side effect is that it makes your bones ache, like having the flu. It varies from person to person, but it was something I definitely didn’t want to experience on top of being sick from the chemo drugs. I’ve heard it described as horrific, but I am willing to wait and see how my body handles it.

I was sent home again today, so they could order up enough Taxol for me (3 weeks worth). I will be returning tomorrow and will be sitting through approximately 5 hours of chemo in one shot. I will then return on Saturday for the booster shot. I have shed a few tears today because I’m frustrated and disappointed in losing the little bit of control I had over the decision-making process. I’m also sad and concerned about the unknown, now that my schedule has been disrupted and I don’t know what all of this will do to my body. I’m hopeful that once we do this I will be able to stay on track for cycle 6 and will finish one week behind schedule, since I had to skip last week.

I want to add that I am aware every day how fortunate I am to have tolerated the drugs the way I have. I know I am close to the finish line and will not take my eyes off of the prize. It feels a bit like I’m being pouty in regard to all of this when I know how bad other people have it. I carry the knowledge with me every day that my aggressive cancer cells would have continued to destroy my body silently and I would have had a terminal diagnosis if not for the common cancer cells screwing up my reproductive system and prompting my doctor to do further testing. I know every day people are losing their battle with many different diseases and they don’t get a second chance like I have. I am grateful and if I have to do what I’m told, I will. The side effects are a temporary blip and worth it in the end. Let’s do this thing. xoxo

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Blood Transfusions Don’t Scare Me Anymore

After I had my hysterectomy I lost blood due to “weeping” wounds. This means that the lymph nodes that my doctor biopsied bled until they clotted. I kept having trouble staying awake after the anesthesia wore off and couldn’t understand why. Once they explained this to me and told me I needed a couple of pints of blood via a transfusion it made sense. Hours later I awoke and felt much better and was able to function and stay awake.

This week, when I was told my blood cell count was low, I was given the option of a transfusion and I immediately said yes. I had been tired and listless, not wanting to leave my bed much, and I saw a transfusion as a positive step to getting myself back on my feet. I arrived at the center at 8am on Friday with snacks, ready to go. The nurses were wonderful and I was seated facing a wall of windows in a chair similar to the ones in the chemo room at my oncology clinic.

The nurse explained where everything was and that it would take about 4 hours to give me two pints of blood. She gave me Benadryl and Tylenol to help with any reaction I might have (I wasn’t worried, since I’d had a transfusion before, but it’s a necessary precaution) and then accessed my port. The security checks that nurses do when giving blood is thorough and reassuring. They match numbers and your name and double check everything with two nurses working together to make sure you receive the right bags of blood. Once that was done, I just had to sit and entertain myself while the blood dripped into my body.

This is pretty much what I did to keep myself busy – I took photographs with my cellphone to document my time there. I also plugged in my headphones and watched episodes of The Golden Girls and part of a Robin Williams film that happened to be on one of the television stations. Time flew by and soon I was finished and ready to go home. It’s interesting that as time went on they rechecked my vitals and I could see my blood pressure going up from 100/60 to 120/68. The receptionist commented on the color in my cheeks as I said goodbye on the way out too. Hopefully this will help others to not be afraid if they’re in need of a transfusion. Yes, things can go wrong, but normally it is a very safe and easy process.

Cautionary paperwork.
My view.
All hooked up and transfusing.
A therapy dog stopped by for a visit.
I appreciate the nurses, who always offer a pillow and blanket.

The Golden Girls!
Such a lovely color.
Checking my blood pressure, again.
Taking my blood into the bathroom with me.
Almost finished.
Afterward, my friend Anni took me out for a crepe and iced coffee. Yay!

I’m Only Human (And So Are You)

Yesterday was the first day when I’ve shown up for my chemo appointment and have been sent home because my white blood cell counts were too low. This is very common and I’ve been told that it usually happens around cycle 3. I’m at cycle 5, so I will take that as a good sign that my body is doing better than average. It’s disappointing to know that I will now be unable to finish my chemo on September 25th, but you can’t force these things.

So, what happens now? My red blood cells were low too, so today I visited the hospital for a blood transfusion (more about that in my next post). I had two when I was in the hospital after my surgery, so it isn’t a scary thing for me. I also knew that I felt much better after the last transfusions and I was looking forward to having more energy. I’ve spent a few days this week napping and not wanting to do much. I blamed it on the hash oil I’ve been taking daily, but apparently I was just tired and had a low blood cell count.

Let’s talk about hash oil for a minute. No, it isn’t the same as smoking or eating marijuana. The oil is processed differently and I take a spoonful every night before bedtime. Hash oil has multiple positive properties for me, as a cancer patient. First, it helps me sleep at night. Second, it’s rumored to help keep white blood cell counts up. There are other benefits to taking it, but right now, I’m focusing on the first two. I’ve also heard claims that it cures cancer, but I don’t believe that. I believe it is a tool that helps with various issues associated with cancer. I’ve commented on multiple posts on Facebook that claim that yet another celebrity was cured using hash oil and have said that hash oil (and pot) are great when used in combination with other treatment, but should not be seen as an alternative to traditional medicine. That’s my personal opinion, but I have not seen a study that proved that anyone cured cancer via using pot or hash oil.

Now, let’s talk for a minute about the various treatments I’m using and why I chose to go through with chemotherapy. I have only had a couple of people try to talk me out of chemo. The mistrust of Western medicine is understandable when it functions as a profit machine and only offers certain treatments or solutions that don’t work on every patient. I get that. I also hate having to be firm when talking to someone who thinks I shouldn’t have gone through with chemo. Here are the facts – I not only have “regular” cancer, but I am fortunate enough (sarcasm) to have a second type of cancer cells present in my body and they are rare and aggressive. When faced with the knowledge that you have a ticking time bomb growing within your body, what is the right decision to make?

The right decision for me was to listen to my doctor and decide on a game plan that would include traditional treatment from the West while also incorporating alternative and Eastern medicine. Acupuncture, massage, vegetable juicing, supplements, smoothies, hash oil, and chemotherapy – all working together in the hope that we can kill off that which threatens to kill me, while minimizing the affects of chemo on my body. It primarily comes down to a battle against nausea, neuropathy (pain/numbness in the hands and feet), and fatigue, as well as the effects of having a complete hysterectomy (instant menopause symptoms).

I believe the combination of treatments I’m following are working. I’ve experienced minimal menopause symptoms and have shown no sign of neuropathy. The hash oil is supposed to help keep white blood cell counts up and considering I’m 2 cycles past when the average patient shows low cell counts, I’m ahead of the game. I’ve not lost weight, even when I have nauseous days. I’ve thrown up twice. Other than a decline in energy, which is perfectly normal, I’m thrilled with how things are going. I say we each need to be empowered with information and access to a variety of treatments in order to find what works for us.

Okay, back to talking about my current state. I guess, in a way, knowing what’s going on with my cell count makes it easier to not feel guilty for staying in bed and resting. I’m the kind of person who likes to feel like I’ve accomplished at least one thing every day and with the summer days passing by so quickly, I know there will be rain in the near future and the time for working on certain projects will be past me. I try really hard to not beat myself up about it, because I know my health is more important than a to do list right now. That said, it’s really difficult to not feel disappointed in myself anyway. I’ll get over it and there are far more pressing issues for me to be upset about.

Yesterday I was talking with a friend who is facing losing their health insurance that has been paying for their monthly cancer treatment. He is now facing having to pay the $10,000/month tab on his own, through no fault of his own. Should being unable to continue working at the place providing your health insurance force a person out of life-saving treatment? That is where I have major problems with health care in the US. We want to claim to be number one, yet people fall through the cracks all of the time. How can we throw away people like that? The Affordable Care Act has helped us to take a giant leap forward in caring for those who have been considered expendable, but it does not go far enough. We are all equally deserving of whatever care is available out there.

At the end of the day, I do not understand a system that picks and chooses who is worthy of keeping alive. Why should certain people not matter just because they aren’t wealthy?  I have to tell you that if not for the ACA, I would be in big trouble and possibly buried under medical bills right now. People say horrible stuff all of the time about not wanting to “pay for parasites” or something similarly offensive. Why are people in this country okay with picking and choosing who lives or dies? Other advanced countries have universal healthcare and we should too.

I appreciate what President Obama has achieved with the ACA and I know his original plan went much further and was hacked apart by the opposition. It’s time for people to take a good hard look in the mirror and realize that they are being selfish when they say they don’t want to help others. It’s especially hard to see people who are supposed Christians say hateful things about helping everyone equally. We can do better. We need to turn things around for the kids who will inherit the mess that selfish adults have made. Yes, we need money to survive in this society, but at a certain point it becomes obscene and wrong.

I promise to step off of my soap box after I say one more thing. I’m a little bit frustrated that people in my life who love me have to keep using me and my story in order to defend the ACA. Don’t get me wrong, I love that I have helped to give people a story about how important affordable heath care is. That said, no one should have to say, “My friend/wife/co-worker would have died without this simple lifesaving service” to try to counter people who rant and rave about not wanting to help others. It’s appalling. I think we all need to take a step back and think about what it means to have compassion for others. It’s not that hard and giving that little bit of yourself to help others means the world to many. It often means the difference between life or death as well. xoxo

Everyone Deserves to Feel Like a Cancer Fighting Super Hero

Last week my friend Anna accompanied me to my chemo appointment, where she surprised me with a superhero costume theme. We each had a cape, a t-shirt with a personalized Superman-like symbol, and a sequined tiara. Each week when there has been a fun theme, the staff at my oncology clinic and many of the patients have enjoyed it. Sometimes people at the clinic look at us like we are strange, but for the most part there are smiles and words of appreciation.

Anna and I
My Super Kelly logo (with chemo tubing)

We were approached by one patient who asked in an excited voice if we were cancer-fighting super heroes. That moment has resonated with me. I felt an instant connection with her and once we were back in the chemo room she sat across from me and we exchanged names and she gave me a few of her magazines to read. She saw that the symbol on my chest was in blue and asked if I have ovarian cancer. I said no, that I have endometrial cancer and that its color is peach. I told her I’m not a fan of peach as a color, so I’m just winging it.

Super Anna

Super Kelly

As my chemo drugs dripped away and Anna and I visited, I noticed my new friend sleeping quietly in her chair. I never had the chance to ask her the type of cancer she is dealing with. I found myself thinking about how happy it made her and I wished I’d had an extra cape for her. I started thinking about how wonderful it would be to make smaller capes to take to a children’s ward. If anyone deserves to be celebrated and made to feel like superheroes, it’s children spending their childhood stuck in hospitals and doctor’s offices. I’m not sure how this will manifest itself, but I would love to accomplish that somehow.

My monkey cape
Monkey detail

When I was done with chemo that day and got up to leave, my new friend was still sound asleep. I didn’t want to wake her and told her companion to tell her it was nice meeting her. I know there is a slim chance that we will see each other again. Patients are on different schedules and even though I’m there every week there is a chance that her normal day isn’t the same as mine or that she doesn’t come in as often. It’s okay. I’m glad when I get to meet kindred spirits, even if briefly.

And now, back to battling cancer and living my life. And yes, I like sleeping in my superhero shirt and I have my cape on standby, in case the world signals that it needs a cancer-fighting super hero.

The Big C

I’ve been working my way through the television series The Big C on dvd. I just finished season three and it’s been quite the roller coaster ride. I wasn’t sure if I wanted to watch it in the beginning, because of the subject matter. I thought a tv show about cancer might be too much right now. As I worked my way through the first season I realized it was kind of cathartic to watch someone elses’ experience with cancer. Because the main character is a fictional woman who receives a terminal diagnosis, Cathy Jamison is able to have crazy, irrational, emotional, bold, and yes, funny outbursts and reactions that most of us can only experience vicariously through someone else.

Laura Linney plays Cathy on The Big C.

 
It has been interesting to watch the highs and lows, suffering and triumphs, and most of all, emotional processing of a terminal cancer diagnosis and its affect on Cathy and all of the people in her life. I have been hooked from episode one and waited and marathon watched all of the dvds I could get from Netflix. Unfortunately, I am stuck with no season four dvds available yet. It is testing my patience, but I also received a big hint at the end of season three as to how season four will go. I can wait.

When I really get attached to tv characters and the shows they’re on it is hard to say goodbye to them. I feel Cathy and her family slipping away as we head into the fourth and final season together. The show has done an excellent job of representing diversity and strong female characters of varying ages, backgrounds and life experiences. The male characters are great supporting parts and I am especially fond of Cathy’s brother Sean, the rebel and outcast who doesn’t follow traditional societal norms. In fact, he crashes through them every chance he gets. Despite that and being a sometimes unstable bipolar person who gives his sister a hard time, he is unconditionally supportive and loyal when it comes down to it.

To sit back and watch another person react to facing death in ways that are liberating, hilarious, and sometimes horrifying, pulls at my heart strings. In the bigger picture, we root for Cathy. When she is urged to go through unconventional treatment instead of giving up, I rooted for her. I felt the same when she finally got into a clinical trial she was desperate to get into. Part of me feels bad because I am watching the sometimes desperate acts of a woman with a much more tragic diagnosis than mine. Most of all, I feel a kinship with Cathy and it feels good when I see her kicking ass and taking names. She makes some wrong choices because she is human, but for the most part, she is acting out for those of us who can’t. She is the voice of so many women who have faced cancer and their own mortality, even if she acts badly at times.

I wouldn’t recommend this show to anyone who doesn’t want to see a “brave bitch” fight for her life and struggle with facing her mortality. It isn’t easy or pretty and often is what most would describe as inappropriate, but man is some of it funny. It’s my favorite kind of funny too – the sarcastic, messy, intelligent kind of funny. It’s brilliant and even if you don’t agree with how Cathy handles things, you have to hope she will be cured, so we can keep on enjoying her company and adventures.

I think the boxing gloves are a great symbol for what it feels like to battle cancer. It’s an endurance game and you have to land punches and stay on your feet while getting punched back.

The subject of a cancer patient being selfish came up and I had to agree that Cathy is sometimes selfish. I also have to say that most people have no idea how they will react to a terminal cancer diagnosis until it happens. A standard cancer diagnosis is enough to send a person into uncharted territory emotionally. I feel selfish on the days I don’t feel well and want to be left alone in my misery. Maybe it’s the opposite, I don’t know. I don’t want others to feel bad because I’m lying on the sofa and am struggling to eat. I don’t want them to feel like they have to wait on me or drop everything in order to stare at me while I feel nauseous and unable to eat. I appreciate those who check in and want to care for me, but I also like feeling like I’m practicing self-care by doing what I can myself.

It’s also crucial to have a support system and not be so stubbornly independent that you are incapable of accepting help. Cathy does many things on her own, but at the heart of it all, she has her family. I have friends and family that are here for me and are supporting me 110% of the way. It’s been interesting for me to have had four different friends take me to chemo, with costumes and such to make it fun. It’s nice that they want to be there and see what I go through every week. They have met my doctor and those tending to my health needs, seen how my port is accessed, and sat with me while I sleep or Facebook or eat in my chemo chair of the week. I felt bad at first, but then I realized they want to be there for me, with me. It’s been an interesting experience and I’ve enjoyed it. I am grateful.

Cathy’s family and an uninvited extra guest.

When relationships and situations deteriorate on a tv show, it is easy to say that you know what the characters should do to make things better. In our own lives, we tend to not have all of the answers and sometimes think it’s easier to walk away instead of trying to work on saving the relationship. Unlike Cathy, my spouse is essential to my care and survival. I’m not saying I couldn’t survive without her, I could. I would be missing out on the feeling of security she gives me. I know I can tell her I just don’t feel good or want to hide for days, moving between my bed and sofa, doing little in between. Unlike the tv characters, we are able to work through all of this without affairs, disagreements, lying, and so on. Even though I may be facing a shorter than expected life span, we keep talking about the future and the road ahead of us. It’s very comforting.

In season one Andrea, one of Cathy’s high school students, tells her “I, for one, think you’re a pretty brave bitch.” She even makes a custom shirt for Cathy that is bedazzled with “brave bitch” on it. I love that. To face this kind of illness head-on does force you to be brave. I, like Cathy, embrace the idea of being a brave bitch because I’m fighting a disease that wants to kill me and I’m trying to do it with humor, honesty, and as little complaining as possible. I know it’s only going to get worse from here through the end of my chemo and I’m owning it, or at least trying to.

Cathy’s response to her employer after she tells her to be more professional about things. It’s a response we have all wanted to give to someone at some point in our lives, and we can live vicariously through her actually doing it.

A Very Special Birthday/Get Well Card

This was created by my friend Jessica’s daughter, India. She handed it to me during the birthday party/fundraiser. This sweet gesture means so much to me, I decided to share it here. I have a t-shirt design of a “zombie kitty” I created and India drew her version of it. She then wrote on the back, making it into a get well card for me. I told her I was going to put it on my refrigerator when I got home, but I thought I’d share it with the world too. Thank you Jessica and India. Thank you to everyone who came to the party, sent/gave me cards and/or happy wishes. It all means more than you’ll ever know. ❤

front

back
A box full of my zombie kitty t-shirts.