Update on chemo and more

It's been four weeks since my last chemotherapy treatment. I'm getting back to normal. Taste is returning, damaged fingernails are growing out and outward signs of the chemo are lessening. Even my hair has started to grow back. As Bob told his sister, "It's almost measurable..." (So far it looks like it's 99% white but I noticed some darker hair sneaking in recently, maybe it is just slower to recover.) My advice to someone who is going to have chemotherapy is to hang in there. There are plenty of days where you want to cry (and do) and want to quit chemo but by leaning on loved ones it's doable.

At one doctor visit I found myself complaining about having to go through all this and still having odds that the cancer could return. (If I did nothing further than surgery in 10 years I have a 58% chance of no recurrence; with hormonal therapy it goes up to 72%; add in chemo and radiation up to 84% and then one more new drug will bring it up to 88%.) Seems like an awful lot of work to have no guarantee. Of course, the doctor then reminded me of the odds of not surviving things like gall bladder surgery or even pregnancy. While still not completely happy with the odds it was reassuring. If you know someone who is upset with the statistics given them remind them to hang in there. This is a fight worth fighting.

Today I have finished the first week of radiation therapy. So far this has been much easier and certainly faster. The only bad thing is that the treatments are five days a week. But the office is open early so I'm home before the kids are up. I was kind of hoping to start this therapy immediately following the chemo so that I'd be done sooner. The radiation doctor pretty much said no way, he wanted to let all the chemo drugs get out of my system. In the end a couple weeks won't matter one way or the other. So Matthew and I spent our "free time" painting and cleaning out the spare bedroom. (It took the whole time as we would work a little while and then take a break--it will be nice to get back to full energy...) But back to the radiation therapy--I am scheduled for 33 treatments so barring any complications will finish the first week of June. The therapist gave me my whole schedule so I can mark each treatment off and continue a count down to better health.

Night Life

Generally I sleep well at night. Oh, I know the odd project will keep me awake and working or on occasion I can't put down a really good book but those "were" rare occasions. Since my diagnosis and now with the chemotherapy more often than not I'm wide awake in the middle of the night.

I've learned some things. One--out of our 150 channels on satellite at least 140 are paid programming during the midnight hours. But more importantly, two--our cats have a night life that I never imagined.

That's right: those cats who sleep all day are different animals in the night when it's dark and quiet. The older cat, who I thought slept on my end of the bed all night, thinks it's great when I'm up and follows me around waiting for his bowl to be filled. The younger cat is a terror. Who knew the mischief she was in. A black flash races up and around the stairs, into the living room, behind the tv (which she has to slip behind as it's in a hutch), over the railing, up to the fireplace where she stops for a second and stretches up to try and reach my spider plant. Then it's back down, up the stairs barely touching them and into the kitchen where she slows down long enough for a drink out of the fish bowl. Or better yet a pause to knock over a filled cup that was left out, making a good mess.

Do you ever feel like you have gremlins? In our house I believe now that the cats are the culprits. Cupboard doors are opened, clothes and towels drug across the floor, papers on the table flung onto the floor with abandonment. Those cats are much more active at night than I ever imagined. The other night I walked into the bathroom and discovered the cat playing with my toothbrush. I also now know why the linen closet door is always open in the morning and the toilet paper unrolled in every bathroom. And who knows, they might even be stealing socks.

During the day our cats are real scaredy cats (most visitors don't even know we have them). We think it's because they are one generation from being wild. And maybe their instincts take over at night time too when they are on the prowl exploring every corner of the house.

After watching them these past months I now will stop blaming the kids for all these messes. Of course, the cats are entertaining and certainly a lot better than scrolling through the channels. But... last night I could hear that black one doing something in the kitchen where it was dark. When daylight rolled around I realized she had found the butter dish on the counter and found it to be a tasty treat. I think I will have peanut butter on my toast this morning.

A Little Help From My Friends and A Maple Long John

I hesitated before hitting the "Publish" button with my last post. I knew it was not positive and some 0f you shared that you were surprised. Yet I felt that readers who also had friends going through cancer and the various treatments should be aware of the realities. The surgeries and treatments are not a bowl of cherries and there likely are times when each person will be discouraged. As expected, I received many replies to the "Staring at the Ceiling" post. Most were positive and encouraging but a few were critical that I showed such emotion. All in all I my post as a dose of reality to those you might run across who are struggling with cancer, therapy and its side effects.

While I look toward the end of this month and finishing chemotherapy it occurs to me that there are many readers who do not know quite what to do or say when their friend or relative receives a life altering diagnosis. The following are just some of the ways others have offered positive encouragement and help to our family:

• Sharing Your Personal Experience--I was surprised at how many of my friends have been through something similar. Naturally, those who had surgery 20 years ago had very different experiences but it has been very uplifting to hear from all the survivors, especially long timers, and know that there is a future.


• Cards, Letters and Books--Cards and letters are great reminders that others care. But they don't have to be physical. In this virtual age e-cards and mail can be sent with a quick of the button. Getting any mail is always a picker upper. Over the course of all this I have received a good number of books. They'll all be read eventually, but I have noticed some difficulty keeping focused so books with a one or two page story have been easier for me to read.
  


• Meals--This morning I got a note from a friend who wants to bring dinner over the day before my last treatment-what a way to celebrate! I have another friend who brings something each chemo day. Some friends have given us gift cards for "to go" places. No matter what, we enjoy not having to fix food every day. As one of my friends reminds me, "It's easy, I just fix two meals...one for our family and one for yours."


• Prayer--Immediately following my diagnosis we had friends email and call us to ask if we would like to be on their church prayer list. Shortly after being diagnosed one of our friends talked to our pastor and following church invited us to meet at the altar for prayer. This friend had lost his first wife to breast cancer and had been through treatments with his second wife. His empathy was huge especially for Bob who at the time was feeling pretty low with all this news. As believers we feel strongly about the power of prayer (even though we try to remember to pray "Thy will be done" and not "my will".)


• Remembering the Rest of the Family-- Bob also works with one gal who went through the same stuff with even the same doctors as me. She has been a great resource for him and a very good source of comfort as he sees her success 5 years later. My sis knew that I didn't the energy to make Matthew's gluten free snacks from scratch and and sent a gf cake mix she found (we're having chocolate cupcakes tomorrow.) Other friends have stopped by or sent treats for Matthew. He enjoys getting things especially if its yummy...


• Unique Presents--One of my friends researched the treatments I would undergo. A package arrived from her filled with items that I might need during the next few months. As we unpacked the box there were peppermint candies and flax seed crackers for upset tummies and that would taste good, warm socks for the treatment days, mint tea--also for the upset stomach, a special neck pillow which turned out to be very useful following the surgeries, a book of uplifting survivor stories, and more. Yes, I could have bought all these things myself, but the fact that my friend searched them out holds great meaning. Another friend learned that I am fond of Butterfingers and sent over a very unique tree with Butterfingers tied to the branches. Yum... One of my Alaska sisters asked if I could use a Russian scarf. She then reached out to her Russian Orthodox friends and ended up sending 18 scarves that have all been prayed over. I have a scarf to match all my outfits. And speaking of my head... in the mail I received a hand crocheted hat that is warm enough to wear at night and cool enough that I can wear it under a scarf. Every gift is appreciated.
  


• Company--Several friends stop by each week. The timing for visitors is sometimes iffy...I generally enjoy the company and hearing about someone else's life but there are days when I'm just not quite up for it. There have been times when a friend stopped to visit and ended up looking at Matthew's stuff because I dozed off on the couch. But an understanding friend will...well...understand.


• And lastly Maple Long Johns--Okay, I have gotten comfortable with the idea that now is not a time for dieting. It's been enough of a challenge to find foods that taste good and high on my list are maple frosted donuts. Maybe it's psychosomatic... and I'm okay with it being all in my head. On the day after chemo there is nothing better than a nice warm donut especially a maple long john.
  

I'm reminded of a story I read long ago. A family lost a loved one and were busy preparing for the funeral when a friend stopped by. He told them he knew they were busy but he wanted to help and asked where their dress shoes were. He took each pair of shoes (the adults and kids) and polished them, then lined them up in the hall. When the family was dressed they were able to find their shoes and shiny and without scuffs. Helping someone during a trying time doesn't necessarily mean spending lots. We all have gifts and talents to share with our loved ones.

Staring at the Ceiling

Maybe I should call this month The Doldrums... These chemo treatments are ticking down. Today I will have number 6 of 8. I can look forward to finishing the end of March. However, it will not be the end as six weeks of radiation therapy will follow. Some days it is hard to see the light at the end of the tunnel.

Yes, this is a whining post. I'm tired of food tasting bad. I'm tired of looking scary. I lost most of my hair but not all. In the chemo office I see these ladies with beautiful bald heads. Mine is more scary looking with short white porcupine quills; certainly not shiny like Charles Barkley. The other day I really looked in the mirror and realized I have a very pasty white pallor with dark circles under my eyes. No wonder people are being super kind when in the store. I'm also tired of my back and legs aching so that I don't sleep well. And let me not forget to complain about the hot flashes. The thermostat is set at 65 at night with the fan running and I wake up several times bathed in sweat.

Mostly right now I am just tired of being tired. My schedule has been put on hold for the spring. We get so little done--I have the most energy in the mornings so Matthew and I try to do our running and chores before noon. Then it's time to sit down...and look at the ceiling. I've noticed all kinds of things--projects for me if I could be brave enough to climb all the way to the peak of the ceiling; projects for Bob as I noticed a screw missing from the ceiling fan. (Bob assures me the fan will not collapse and maim us...but...) And as I've mentioned before we spend way too much time watching that darn DIY channel (Do It Yourself). Did you know my kitchen cupboards are outdated? How about the tile? The list of things that should be updated is endless.

My friend told me to stop watching those shows. Hmmm... how about catching up with my continuing education? I can easily read the articles and take the quiz while resting my back. But...Oh, the irony. This month's Radiology continuing education article is on imaging for breast cancer patients. I can tell you I didn't read the whole article; the statistics alone were discouraging and then looking at the pictures from the PET and MRI's of metastatic disease. I think I'll pass.

Matthew and I did find that we could work outside on our growing weed population. We take turns digging them out and have found that we both have about a 15 minute work tolerance. I swear I can't figure out how some of my friends manage to go through all this and continue to work and care for their family. These gals I truly admire.

Thank goodness it's almost March. Oh, I know. I could start working on taxes. But wait, I really think this year it is a job for Bob. Maybe I should just go back to the recliner, control the remote and look at the ceiling.

The Panic Button

For all of you who think I'm getting through this whole ordeal with flying colors I write this story...

When the MRI technician was satisfied that all was in order she placed the button in my hand. "This is the Panic Button. Squeeze it once if something goes wrong and you need me." I smiled and confidently held the large round bulb in my interlocked fingers.

"This will be a breeze," I smiled to myself. After all, I had already been through an MRI and PET scan (along with numerous other studies) the past three months. Claustrophobia in check, I not only survived in the narrow spaces but even dozed off during the PET scan. I was confident that this test would be the same.

The tech pressed more buttons and soon I was gliding into the center of the MRI tube. A light shone in from beyond my head and without my glasses the tube seemed actually quite roomy. In less than a minute the klaxon sounded letting me know the magnets were engaged. "Okay," I thought, "I can do this."

Have you had an MRI? Most everyone is familiar with the large magnetic machine. The tube is long and sure seems pretty narrow. In actuality there is plenty of room to relax your arms and your knees are bent up in a comfortable position. Most everyone is familiar with the myriad of loud sounds made by the magnets as they vibrate at different frequencies. The sounds and vibrations stop and start as the scan progresses. Some of the vibrations are such deep bass that you can feel the vibrations (like when you are next to that pesky teen with his souped up speakers at the stop light).

The technician had told me it would take about 12 minutes for the first half of the test. I'm sure she was accurate but something happened about midway through and suddenly time slowed. It was as though I was on the edge of a black hole or one of those space-time continuums that they always talk about on Star Trek. In any case I felt myself aging right there in the tube. Then, it got hot. I was roasting. "ACK! GET ME OUT OF HERE!" my mind shrieked to me. Still I reminded myself that I could do this and tried to relax. "Close your eyes..." Boing. They popped open. And then it really happened. The vibrations changed and sounded like a million bees buzzing in my head; the walls of the machine felt as if they were closing in on me. I was certain that within moments I would be out of oxygen. "Please...self...before it's too late..." And I squeezed the Panic Button.

Instantly the vibrations stopped and the technician was in the room pulling me out. Of course, by then my mental state had deteriorated to the point that I was babbling incoherently. After reassuring me and an opportunity to breathe once again the fresh room air she told me the news. I was 30 seconds from being done when I pushed the button and she would have to redo that segment of the test which would take another 5 minutes. "Grow up you big baby." I kept telling myself, "You've worked around this equipment for years... Five minutes? Even the underwear bomber was able to hold out in interrogation that long." So I agreed. Five more minutes...just knowing gave some peace of mind. That's 300 seconds...I can count that high. Back in I went. This time with my finger tapping as I counted the seconds. I got to 268 when she announced I was done.

As you might imagine, I was anxious to sit up when the technician pulled me out. "You know," she said, "maybe it would be best if we have you come back tomorrow for the second half of the test..."

Reality Check

I don't know how you handle challenges but since this diagnosis I've become more self centered. I didn't see it happening but all the appointments, surgery, and treatments meant that everyone's schedule revolved around me. And pretty soon there was a lot of "Woe is me" talk... Thankfully, last week I was reminded that I'm not the center of the universe...

The first thing that happened was Matthew's doctor appointment. I've talked about his dentist and how much we love her before. We still do.

Matthew needed to have a tooth fixed and the dentist wanted to get some good xrays. In the past anything beyond a gentle cleaning involved general anesthesia. She wanted to try a less involved sedation so we arrived early in the morning and she gave him some concoction that would relax him. It relaxed him, but not enough so a second dose was given. After more wait time we took Matthew into the room. He was relaxed but fear is mighty powerful and the poor guy used all his strength to keep from lying back in the chair. I was sure the dentist would call it quits but with four of us talking and holding his octopus-like arms, legs, and head we persevered. Matthew now has a shiny new tooth that he'll gladly show you (he doesn't remember being scared--thankfully). But as I was laying across his legs gripping his arms with the bright dentist light shining in the general direction of his face I thought, at that moment, Matthew was the center of my universe.

The second interesting thing happened on Friday when I went in for chemo. In the chair next to me was a younger woman and in the chair next to her was her sister. Each was diagnosed with a different kind of cancer one day apart last year. Both had metastasized and spread already. The sister who was closest to me leaned over and whispered how her sis nearly died several times last year. This woman, while undergoing her own surgery and therapy, managed to become caregiver for her sibling. They talked to me and assured me that all tests showed they were both beating their cancers. And as they talked I was struck by how each talked about the other, holding each other up. They were too busy worrying about and taking care of each other to become self-centered.

My own detours in the road seem minor today. Both of these incidents reminded me how much easier life's challenges are when you focus on the needs of others. Today I'm going to make a list of how I can help someone else and then go forward.

Hair Today--Gone Tomorrow

Well, it happened as they said it would. My hair is no longer something to be styled. Sunday it began coming out in handfuls. It was more emotional than I expected so Bob and Rebecca were recruited to cut it. Rebecca chopped it off to an inch then Bob spent a half hour neatening it up. My hair has always been thick so even though I'm shedding like a scared cat there is still a lot attached to my head. I don't think it's actually falling out but rather breaking off at the root. Kind of creepy if you ask me. I asked the family to go ahead and pull it off but everyone is unnerved after the first handful. Still in the next couple days I expect there will be very little left. Oh, and gentle readers you are indeed fortunate the hair cutting picture was too blurry to share. Right now I look an awful lot like a short haired porcupine. Or maybe a Chinese Crested dog. In any case a scarf is in order.

I was looking forward to wearing my new stylish hats but thus far my head is too hot to wear anything but my one old silk scarf. Hot--I mentioned this to the doctor last week. "Good," she says, "Hot flashes..." I am waking up in the night roasting but to the docs this is a sign that the medicines are doing their job. Thank goodness it's not summer here, I would be miserable.

One thing I remembered to ask about during this last chemo treatment was whether the effects would be cumulative, getting worse each visit or stay the same. Fortunately, it sounds like each time the reactions will be similar. I don't think the nausea was as bad this time but I hate to say anything in case it suddenly gets worse. What I can say is that the nurse gave me one more anti-nausea pill so I'm up to four choices depending on how bad or ugly it gets. I'm hoping to float through this without taking those last level pills. The nurses say I may be more tired but that is likely due to the decreased blood counts as we go along. No argument there. Thirty minutes of work and I'm ready for a break.

People ask how the rest of the family is coping. My folks were a huge blessing keeping us on track. I think I can safely say we are adjusting to this new lifestyle where the rest really pick up the slack. Bob and Rebecca make sure the clothes are washed and folded, that the kitchen is cleaned each night and both are careful to see that bathrooms and germ areas are cleaned daily. Thankfully, Rebecca is still on break as we've come to rely greatly on her help. We'll have another adjustment once she goes back to school but by then we hope to have a good routine in place. Matthew, as always, likes to keep his routine and as long as it's not him to see the doctor he's okay. He has been much more inclined to help me and leaves his computer willingly to go for a walk every afternoon. Of course, he is more than happy to watch tv when I want a nap...as long as it's one of his favorite shows.

Next therapy is Jan. 15th. That means I should be good for at least a week. If you're in the area please stop by for a visit. Give me a call and I'll be sure to have my crazy head covered. And remember not to be offended if I start yawning.