I was doing really well with chemotherapy. I had a positive outlook, I felt really crappy for 4-5 days and then I felt actually pretty good for 9 days. After my second chemo treatment, my oncologist adjusted my Adriamycin dosage and I thought I was tolerating it really well. Things were looking up! But somewhere between the third and the fifth dose, something changed.
Goodbye Nausea, Hello Pain
The
Adriamycin was causing terrible nausea and it made me want to die every other weekend for about five days. After the second treatment, Doctor Dougherty reduced my dosage of the Adriamycin and the nausea subsided quite a bit. It made every other weekend more manageable, still pretty crappy, but more manageable. The nausea may have been less, but it took longer to get past it. I found myself still wanting to die on Saturday and Sunday, but still feeling tired and sick on Monday, Tuesday, and Wednesday. I was having a hard time focusing and staying alert for a full day at work. That caused me to have to take longer to get stuff done. So what I used to get done in 2 hours started to take me 4 hours. And then when it got done, there were a lot of errors. My doctor called this '
chemo brain'.
Luckily the days of Adriamycin treatments passed and the
Taxol treatments started on June 2nd. I love Taxol because it does not make me sick to my stomach at all! I have already gained back all the weight (which wasn't much) that I lost while on the Adriamycin. That's too bad, I really could have used that weight loss. The Taxol treatment is a little more involved than the Adriamycin treatments though. The administration of Taxol takes a little over 4 hours. It is also really likely to cause an allergic reaction so when they administer it, they also include a shot of Benadryl to prevent side effects. That means that I am as good as out for 4 or so hours. So the Taxol takes a long time to get, but I sleep for most of it anyway. Then, the day after my treatment, I go in again for a 2 hour saline drip to push the Taxol through my body faster and to get my
Neulasta shot. Neulasta focuses on my bone marrow to boost the production of white blood cells so that I don't get sick from everyone I come into contact with.
Of course I couldn't be lucky enough to get the Taxol and Neulasta without some pretty wicked side effects. Both Neulasta and Taxol are known to cause bone pain. Put them together and I have become a 70 year old woman with arthritis. I get my treatments on Thursday and Fridays. Then starting about noon on Saturday the bone pain begins. It actually starts a little Friday night with pain in my jaw. This past week I went to the Taste of Country concert at Coca Cola field on Friday night after my Neulasta treatment. I started having issues opening my mouth big enough to get my sausage into it. Yes, it sounds like there is a dirty joke in there....<snicker...>
Then around noon on Saturday the rest of the body goes downhill. It starts with jaw and neck pain, then my shoulders start to throb. By Saturday night my hips and tailbone begin to pound. Then come Sunday the pain spreads to my knees, ankles, and feet. The pain in my knees, ankles, and feet will last another 3 or 4 days, but luckily the rest of the bone pain subsides.
As bad as bone pain sounds, I have to sincerely say that it is a welcome side effect in place of nausea. Nausea is the absolute worst feeling. Here we are on June 18th and I only have two more Taxol treatments left to go so being closer to the end than the beginning gives me motivation to keep going. I am glad that the acute pain in my major bones only lasts 2 days, but sometimes the pain and throbbing in my ankles and feet is so much that I will just yell in frustration. BUT, after suffering terrible heel spurs (technically it was
plantar fasciitis) last year, this pain is still less than that could be and knowing it will end makes it more tolerable.
What's Next?
When the Taxol treatments are over, it will take a few weeks for the lingering pain to go away. Then my doctor will decide if I need
radiation treatments or not. If I do, I will receive a daily radiation treatment every day for about one month. When that is over, I will return to work. If I don't need radiation, then I will move on to my breast reconstruction. I am really excited to get my expanders put in and start the process of getting my boobs back. Being flat chested was fine in the spring when a big sweatshirt was totally acceptable. However, the summer is a completely different animal.
In two weeks I will see a new plastic surgeon for a consultation on reconstruction. I had a failed
DIEP flap reconstruction and then a failed attempt to reconstruct with
expanders and silicone implants with my current surgeon. I think the fates are giving me all the signs that I should look for a new doctor. I have an appointment with a new plastic surgeon on July 2nd to discuss reconstruction options.
My oncologist has told me that perhaps the pain from the Taxol and the frustration and dependency of
'chemo brain' would be lessened if I stepped out of the rat race for awhile and focused on better health. As of June 13th, I am no longer working. When I am not in chemo or in the immediate days of recovering from chemo, I am instructed to walk 1-2 miles a day. So far I have been able to keep that commitment. I am even taking my dog with me to keep me at a brisk pace. I even run a little, even though this is a hysterical sight. I caught a glimpse of myself in a storefront window this morning and it was pretty hideous. Picture a heavy set woman with no boobs, no hair, no eyebrows, and no coordination trying to run with a stupid crazy yellow lab dragging her like dead weight. Add to the fact that I just can't run and I can tell you that I go out pretty early in the day when not too many people are on the street yet.
I Get By With a Little Help From My Friends
Food
So far, this year has humbled me so much more than any other period of my life. I was always an "I can do it myself" kind of person. Whenever people said "let me know if I can do anything to help" I always said OK and went about my business. I always thought that was just something people say, they don't mean it. This year, I had to say "actually yes, I could use your help" more than once. When I received my chemo treatments, especially the Adriamycin, I couldn't cook dinner because the smell of it would make me terribly sick. Now with the Taxol it hurts to stand for too long so I can't prepare a decent meal. Thanks to friends and family, like Cheryl Beeman, Jenna Piasecki, Mary Machnica, Wendy Piasecki, and Tina Lane, I had dinners coming to my house for my family and myself that I didn't have to cook or prepare. Thanks to more friends like Cori Zagara, Missy Groth, Laura Fleming, Kim Stachowski, June Spencer, Carol Lorenzo, and even more that I can't remember, I always had a gift card for a local restaurant so my family could go out without me, or if I was hungry and just had no food in the house, I could grab some dinner.
House Cleaning
During this time I kind of said "screw it" about keeping my house clean. I try to keep it tidy, but thorough cleaning just wasn't that important. Until one day I was so disgusted that I just couldn't take it anymore and Melanie Mckowan came over and helped flip over furniture and vacuum under baseboards and behind couches and in cushions. Well one day didn't help me get over my disgust for my dirty house, but I just don't have the stamina most days to go to town on my floors and bathrooms, and when I do feel good, I want to do something fun, not clean all day. This is where my kids come in. Brandon (12) and Sarah (10) have usually helped me when I asked with only a small dramatic production, but I generally didn't ask that often. And when I did, I cut them a lot of slack because they just didn't do a lot of these things often enough to be good at it, like cleaning bathrooms, making beds with fresh sheets, doing dishes, and cleaning up dog poop. Well, now that I can't do it all myself, the kids have a weekly chore list and they have to do these things regularly. This is allowing them to get better at them and they have really stepped up and taken on this new responsibility well. They can see what they have to do the whole week, so they are not surprised. Now that I am home from work, I take the time to inspect their work rather than them just telling me they are done while I don't look up from the computer. If they did a shotty job, I make them do it again. This only happens once and they won't do a shotty job again. They are learning how to have a job and I am enjoying a relatively clean house. It still smells like dog though, anyone want a crazy yellow lab?
Cards
Since January, I have received enough greeting cards to keep Hallmark in business another 10 years. I read each and every one of them and have them saved. I was even sending thank you notes to people who sent me a card, but I quickly got overwhelmed and was going broke buying thank you cards. Three cards in particular stand out to me. First, my friend Madalyn Mayer who I worked with for two years in 2001 and haven't worked with since has really been watching out for me. I think we have a bond because we share a birthday (not the year....). She sends me a card every 2 weeks or so with coupons to stores that cater to mastectomy patients, newspaper articles about cancer and cancer resources, or just poems that she thought I would like. Then there is my friend Cheryl Beeman who I worked with for about 3 weeks in 1997 and have seen in person maybe 4 times since then. It is amazing how awesome people come into your life for random reasons and stay forever?! I thank email jokes and Facebook for keeping us together. Not only did Cheryl bring my family dinner (twice) while I was in the hospital, but she sent me a homemade card full of inspiration and funny pictures. Imagine all the funny things you see on Facebook all compiled into a small booklet. She sent that after my second Adriamycin treatment when I wanted to die rather than go back for anymore treatments and it was a real pick me up. Finally, I got a card, a handwritten letter, and a prayer card from someone I had never met before. My sister's boyfriend's mother sent me a packet of inspiration shortly after I got out of the hospital. I still haven't sent a thank you because it took me like a week to figure out who the card was from. When I realized, I was out of thank you notes and haven't replenished yet. This woman I had never even met sent me prayers and an offer to help. This is truly touching and someday soon, probably tomorrow, I will finally send out a thank you note to her.
Thoughts for my Husband
My husband and kids have also been suffering. My husband because he is an emotional mess plus I am making him pick up the slack after me. He has had to do more around this house in 2013 than he has the past 13 years of marriage. Most notably, I made him finish building my privacy fence that was started in 2007. Yes I nagged him the past 6 years to finish it, but apparently getting nagged by a cancer patient holds more weight. Thanks to my Dad, brothers, and brother-in-laws my husband gets out every once in a while. He needs to get out more, but can't seem to find the time between work and his addiction to Candy Crush.
Thoughts for my Kids
My kids have had it tough because I am making them work (see above). We don't really talk about it, but I suppose when their friends see their Mom with no hair, they tell them things about cancer and ask if their Mom is going to die. They also ask if they can catch cancer by coming into the house. This is taxing on young kids. About 2 weeks ago, my kids received a package in the mail. First, they were thrilled to get a box addressed to them. I am 37 years old and I still get excited to get boxes addressed to me. When they opened them, there was a pink and a blue teddy bear - one for each of them. The bears were sent by the daughter of a client of mine. This client had been my customer in one way, shape, or form since 2001 and I like to think that I have a friendship with him. Knowing that his wife was a breast cancer survivor, he was actually one of the first people I told about my diagnosis. Their daughter, Bella, is one year younger than Brandon and was in first grade when her Mom was diagnosed with breast cancer. She received a teddy bear, which signifies hope, and began
teddypawsforacause.org. TeddyPaws will be opening soon where you can sign up to send a teddy bear to a child whose parent has been diagnosed with cancer. If you can't wait for the site to open, you can email Bella Haurey at
bella@exigent.net. Brandon said he was too old for teddy bears, but his bear lives on his bed and is there every night and every morning (except when my crazy yellow lab decides to take him for a walk). Bella Haurey was the first one who sent anything specifically to my kids, and I will be eternally grateful to her for it.
So to sum up this long overdue blog post. Living with cancer was not so bad, but the treatment will kill you! Luckily I am almost done and ready to move on to the final chapter of this terrible disease - reconstruction and recovery!
