The Plan.

I just finished an amazing book entitled “Still Alice.” It chronicles an intellectually gifted 51 year old women’s descent into early onset Alzheimer’s disease. I highly recommend this book; it is poignant and eloquently written and made me very grateful that I have breast cancer. At least if this disease takes my life I will know who I am and recognize those I love until the very end. Never will I lose myself in this disease. My name is Patty and I have cancer, but cancer is not who I am. I will never be my cancer. I will not let it embody my soul or rob my spirit. I may be in the fight for my life, but I still have the ability to enjoy every moment of every day and am fully cognizant of the blessings in my life and the adversary I face. For that, I am grateful.

I had an extremely long day at the cancer center today. I started with a visit to see Dr. Rado where he informed me that I am good a candidate for radiation. He sent me to visit with Dr. Rege (radiation oncologist) to discuss my options for radiation and then back to Dr. Rado to discuss when to start my chemotherapy again.

Dr. Sheila Rege is a brilliant physician. She was my doctor four years ago and I am thrilled to have her on my care team again. She is kind, compassionate and extremely knowledgeable; as evidenced by her continued tenure as a faculty member at UCLA medical school. She reviewed my scans with me identifying the seven lesions currently on my posterior (back) ribs. Perfectly symmetrical on the 9th and 10th ribs on both the right and left sides and then the ladder of three additional lesions on the 6th, 7th and 8th left ribs, which could be considered vertically symmetrical. Very unusual. I am only experiencing pain in the 9th and 10th ribs, and those are three of the original lesions and are currently the biggest and most defined lesions. So these lesions will be our main area of focus. Radiation is used mostly to alleviate pain. In addition to easing the pain, it will kill the cancer in those spots (we hope) which will strengthen the bone, mitigating the chance of a fracture due to the metastases. I will have 10 radiation treatments, hopefully starting next week. They will use electrons to minimize the impact on the peripheral tissue and focus the beam on the bones. There may be some minimal damage to the lower lobes of my lungs, but the risk is worth the potential benefits. They also want to radiate as little bone as possible to reduce the amount of bone marrow which will be lost. I need all the bone marrow I have to keep my blood levels up during the next rounds of chemo.

My physicians discussed with me the path forward, and felt that the best course of action would be to focus on the radiation for a few weeks, giving my body a little more time to strengthen and prepare for the next chemotherapy onslaught. So I will start the chemo to kill the rest of the cancer and bisphosphonates to strengthen my bones once the radiation is complete. We haven’t finalized the number of chemo treatments, but preliminarily we had discussed three rounds (six doses) and then perform another CT. I am not sure if we would do another bone scan at that time, but it would make sense to make sure it has not spread further into my bones.

So that is the plan as of today. Mike and I have discussed it at length and reviewed our concerns and questions with Dr. Rado and feel confident that this is the best course of treatment. I will go tomorrow to have additional imagining done at the cancer center so that the physicist can work with the physician to pinpoint the areas of radiation. Then I get to party for the weekend and ring in 2010 with the people I love!

Happy New Year! Cheers to a happy and healthy new year!

Lazy Days.

I love the lazy days following Christmas. When there is no work and no school and all the chaos and preparations are over. The wrapping paper has been tossed and the opened toys sit under the tree. I’ve been enjoying the time with my daughter, eating junk food and watching The Gilmore Girls. I got the entire series for Christmas, we are halfway through season one. I wish I was witty and quick like Lorelei Gilmore, I just love that character. Peyton and I enjoy the interaction between the Lorelei and Rory, it reminds us of us.

Its bitterly cold outside, only in the 20’s, so its been great here in front of the fireplace. I was hoping for snow on Christmas, but we just got the cold instead. Mike got me one of those one-cup coffee makers for Christmas, so I can enjoy a fresh cuppa coffee in front of the fire every morning. I am one of those people who only likes my coffee fresh. Once it has sat on the burner, yuk. So a one cupper is perfect for me. Mike also arranged for us to go back to our favorite B&B on the coast over Valentines day, in the same room we stayed in last valentines day. I can’t wait. Last year was the most perfect Valentines weekend ever, and we hope to recreate that again this year. We stayed in Arch Cape and spent time in Cannon Beach and Manzanita. As you all know, I love the coast. I wish I could live there and just watch the tides go in and out, the waves crashing on the sand, the fog rolling in every morning, the crisp air, it is the best place in the world. Now, I haven’t traveled the world, but even if I did, I cannot imagine a more perfect place.

Today is another day of rest and relaxation. Peyton’s boyfriend is back in town tomorrow, so today will be my last day to have her undivided attention. I love this time together, its days like these that make a life. Days spent with someone you love so much it brings tears to your eyes to just think about them. Maybe we will watch more Gilmore Girls as we look once again at her special gift, a photo album of her life up to now. She wants to add a few more pages and put together a legend of the people and places so 20-30-40 years from now when she forgets who and where, she’ll have a cheat sheet. Makes good sense to me!

This has been a perfect holiday, except for the one person who is missing from it all, my son. My heart breaks having him so close, yet so far away. When I go see him he is right there on the screen, and I can reach out, but I cannot touch him. I cannot hug him and tell him Merry Christmas, I can only tell him how much we miss him and how incomplete our holiday felt without him. I’ve been going to see him twice a week, if my health allows, and we have wonderful conversations about current events and the books he reads. He is apprehensive about the day when he gets out, February 14th, and what happens to him then. I am helping him to explore the options. There are a few halfway houses that help people who are just out of jail and there is a friend of the family who has offered to help. I want what is best for him and for him to be somewhere where he can have access to the tools he will need to succeed. It is hard for a felon to get a job, and he has to have a job to pay his fines to stay out of jail. I think he has learned his lesson, but he is in the midst of a deep dark hole, and I know it is overwhelming thinking about climbing out. I have encouraged him that only he can traverse his way out and it is going to take a lot of perseverance and determination, but I believe in him that he can succeed and will be a better person because of it. This type of thing is hard for this “instant gratification” generation. They are used to getting what they want NOW, so to have a challenge like this stretching before them that takes years and years to complete, it will be a test of his character and his strength. I truly believe he will be a better person when he finds his way out of the darkness and back into the light.

We are certainly facing our challenges here in the Taylor household. Peyton and I have discussed that we would like the black cloud that is hanging over our little family to move on out. I hope that the winds will pick up and blow away the storm and leave us with the refreshing post tempest brightness. We just have to make it through and there is brilliance waiting for us on the other side. Walk with us, a journey awaits.

Love.

Love is the answer. What was the question?

What matters in this life? What is truly important? What heals us and takes away our pain? What brings us together? What carries us when we cannot take another step? What fills our cup? What is the only thing we can take with us when we pass to the next life?

Love. As I sat here on Christmas day, and looked into the faces of my family, of those people I love, I realized that they are what truly matters. Being with them, enjoying their company, laughing, sharing, caring, loving. If all the presents went away, the lights, the trees, the stockings and bows, as long as my family remained, then my day, my life, would be complete. Love is what carries us through each day. And I realized, as I face this illness which may very well take my life, that it is the love that I will take with me, it is the love that I will leave behind. My eulogy will not be filled with my accomplishments or my work ethic, I will be remembered for my acts of kindness, for sharing my deepest love with my family, with my friends and for showing that love to all those I come in contact with. It is the love that will fill me up and carry me to the other side, and it is the love that will I leave behind as my memory.

I say this not to be maudlin, or to fill your heart with heaviness, but to give you insight as you live your life into what is truly important and where your focus should rest. I am no giver of great wisdom, nor am I a philosopher, but I am in unique position that I would not wish upon any of you; while still very young I am facing my own mortality. When I look at my life and see my possible demise on the not so distant horizon, it makes me begin to really think about what matters in this life, and what I want to leave behind in this world when I travel to the next. The word that keeps coming back to me over and over again is love.

Love is the answer to all of your questions. Take it with you wherever you go. Leave it behind everywhere you pass through. For love is the one truth that cannot be denied.

My love I give to you, my love I leave with you. Take it with you through all your days and in all your travels. It will serve you well.

Not the Christmas Wish I'd Hoped For

Well I didn’t get the Christmas present I was praying for, health. I had my bone scan on Tuesday and saw Dr. Rado today and the results of the scan were not what we were hoping. There are additional spots on my ribs, but some of them continue to be symmetrical. So I find that very Pattyesque, only I would have symmetrical cancer lesions on my ribs. This is a disturbing development, the cancer in my lungs is rapidly improving, but in the meantime, it is also spreading. So the chemo is working, but not enough from keeping it from developing elsewhere. Dr. Rado feels that this is just such a nasty cancer it is just going to rear its ugly head every chance it gets. So my future is filled with beating this back and continuing to give me the best life we can.

We don’t have a plan of action quite yet. Dr. Rado wants to consult with Dr. Geiver, a radiation oncologist, to see if I am a good candidate for radiation. If I am, then I will get radiation while continuing to get chemo and he will switch out one of my chemo drugs for a different drug that might work better of the bone metastases. I will also start on a 28 day regimen of a type of drug called bisphosphonates, which help to strengthen the bones and help prevent additional lesions. I will meet with Dr. Rado next Wednesday and start chemo and the bisphosphonates next Thursday. Radiation will be started shortly thereafter if it turns out that I am a good candidate. I hope so since that is just another weapon in the arsenal to beat this disease.

Until then, I enjoy the holidays with my family and give thanks for the incredible blessings that I have in my life. I may not have my health, but I can still enjoy everyday activities and the time with my family and friends. I am grateful that I can spend this time with them and look forward to many more Christmas days.

God blessings on you during this holiday. Give thanks for all you have. Each day, each moment, each person in your life is a very special gift.

Cookies!

Christmas is quickly approaching and my daughter and I have entered the baking mode. She announced to me yesterday that she wants to make cookies and dipped pretzels. So we embarked on a successful shopping expedition to acquire all the necessary ingredients. In order to ensure that we had adequate energy to accomplish such a monumental task, immediately following our shopping expedition, we took nice long naps. Then we spent our Saturday night dipping pretzels and making cut out cookie dough. I ran out of energy prior to cutting out the cookies, and we left that task for today.

So today we are going to cut out and lavishly decorate sugar cookies, make some fabulous melt in your mouth meltaways and, if we have time, whip up some powdered sugar tea cakes. This is quite a treat. I don’t think my daughter has made cookies with me since she was in middle school! I enjoy her company so much!!

So, if you are in the neighborhood this week, stop by and have a cookie. I make a first rate cookie, and who doesn’t like a pretzel dipped in chocolate and more chocolate!!

I am slowly starting to feel better. I had my last neupogen shot yesterday, so hopefully in the next few days I’ll start getting my energy back again and feeling more like myself. I don’t know if my white count is going to hold this time, but will get my blood checked again on Christmas Eve when I see Dr. Rado. My shopping is just about done, a few more small things to buy and I still have all that wrapping to do! Wrapping to me is not a routine affair, I believe in decorating the packages and making them gorgeous and sparkling. I don’t have the decorating talent like my grandmother did; who decorated packages so pretty you didn’t want to open them, but I have my own little way of making them sparkle and shine.

I went to see my son yesterday and we had a very nice visit. It is so hard to see him in jail, but I think he is starting to learn his lesson. The hard part is going to be when he is released. He will be a felon with thousands of dollars in fines, no place to live and no job. He has definite challenges ahead of him and there are no programs or organizations out there to help prisoners reintegrate into society. And we wonder why there is such a high recidivism rate. It is not about rehabilitation it’s about retribution. Don’t even get me started on the shortcomings of our system of incarceration. It’s a majorly screwed up system designed to keep people in it, not turn them into productive members of society.

So…on to lighter, and happier, subjects. Enjoy these few days remaining before Christmas. I love this time as we build up with great anticipation to the big day. All the preparation and expectations. A time of love and forgiveness, of giving and receiving. A time of hope and redemption. Enjoy the season.

Reprimanded to Home, Again (sort of)

Well it’s another beautiful day in front of my fireplace with a cup of my Doma free-trade coffee, a homemade pumpkin scone (thanks to Angela) and a dog on my feet. Yes, I said ON not AT. Sophie sits on my feet. Gotta love that little 60 pound puppy. She keeps my feet warm.

I started to get out and about a little this week and have almost finished my Christmas shopping. I didn’t have that much to do anyway, so it was pretty minor trips to the store, mostly stocking stuffers. I found that yesterday I was starting to get my energy back and was beginning to feel like my old self again. It was a great feeling. We (mom, Mike and I) went and got our trees from Farmer’s Exchange, and I selected a beautiful tree. The family came over and we decorated it last night and now, it truly feels like Christmas.

Unfortunately, I had my blood work done yesterday and my white cells are still not coming back and I am neutropenic again. So I am back on neupogen shots daily and we’ll check again next Thursday to see if the white count holds. I should be completely reprimanded to my home again, but I just can’t live like that all the time. I am being smart and staying away from crowds, but I had my family over last night, including my grandson (the germ monster) and basically said to heck with worrying about getting sick. I am so glad I did, it was wonderful to see that little guy again and to spend time with my family and decorate the tree. What a fantastic evening.

I did get really tired last night. I don’t know if it is because I just did too much yesterday or if it is a side effect of the neupogen shot, but I slept soundly except when I woke up at 3am with my bones aching and again at 6:30 to make sure my daughter was getting ready for school. I slept in to 9:30, so almost 12 hours. I certainly can sleep! I cannot blame my poor blood counts on a lack of sleep. I get more than my share of sleep every night these days!

So today I focus on finishing my daughter’s present. I have a physical therapy appointment at 3pm (to work on the lymphedema in my arm) and then I’m picking Jessie up from day care and Peyton and I will hang out with him for a few hours until his mommy gets off work. I have no major plans for the weekend except to wrap presents and enjoy the company of my daughter. Her boyfriend is gone for the holidays, so I really have her undivided attention for Christmas!! I have cards for my friends at the office, but since there are a few people there who are sick, I will probably have Mike deliver them for me and I’ll try to get in to see everyone after the holidays. I really miss my friends at the office.

I’m going to see my son tomorrow, even though the jail is certainly not the best place for me to be. I’m going to take Lysol wipes and wipe down the phone and counter where I sit. You don’t actually see the person face to face, it is all via video monitors. It is almost Christmas and I don’t know if they have visitation next week on his regular visitation day because of the holidays, so I want to make sure he sees a friendly face, the face of someone who loves him, for Christmas. There is not a lot I can do for him, I got him a subscription to the newspaper, which was something he really wanted, and I have ordered him a few books. Other than that, all I can do is tell him that I love him and keep praying for him.

So for Christmas I want my bone marrow to start working again. If you are praying for me, pray for healthy bone marrow. I see Dr. Rado next week and we will decide when I start chemo again. Given the difficulties I have had this round, I don’t know if I’ll be starting up the week after Christmas or if we are going to have to wait a few more weeks. Part of me wants to get started and get it over with and part of me wants to wait and give my body a little more time to regenerate. I guess I’ll leave that decision up to the wisdom of my doctor. I know he has my best interests in his heart.

So, as you prepare for the holidays, think of the intangible things that are in your life that you should be thankful for. When I start thinking of all the beautiful things that grace my life, I realize that my cup is not just full, it overflows, spilling down the side and running off the table. I am so blessed it is without measure. And so, I believe, are you. Just take a moment to realize it.

God bless.

Still Resting!

I was allowed out for a little while yesterday, as long as I was “smart” about it, staying away from big crowds and sick people. I spent most off the day working on a special present I am doing for my daughter, which I won’t discuss here just in case she decides to read my blog. I took a trip to the bank and stopped by Target late in the afternoon, and I am definitely going to have to ease back into activity. Just those few errands left me feeling totally exhausted and ready for a nap. Wow. I am really a wimpy weenie!!

I am just amazed at the toll that this round of chemo has taken on me. Thank goodness it was right before a break; I don’t think I could take another round right now, no matter how many transfusions they gave me. There is a cumulative affect of chemo and there were six rounds preceding this one, and each one did get progressively more difficult culminating in this final awful round that has left me lying in the dirt. I wonder if I’ll ever be the same again.

It has opened my eyes that I need to really focus on my health and let go of everything else in my life that is not a priority. If I don’t survive this battle, nothing will matter anyway, so focusing on my health certainly makes sense. I’m sleeping a lot and not worrying about cleaning or laundry or anything. I told my daughter she can do the laundry when she gets out of school on Friday and Davidson and Susan Wood have hired Merry Maids to come and clean my house over the holidays, so I can just sit back and enjoy this time in front of my fireplace. My only worry is running out of propane.

Christmas will come whether or not presents are purchased or stockings are filled. I watched that great classic “The Grinch That Stole Christmas” the other night and it reminded me that it’s not about the presents anyway. It’s about the birth of Christ. It’s about celebrating our redemption. It’s about spending time with the ones we love and holding tight to those people. It’s about standing heart to heart and hand to hand.

Those Whos are sure smart little critters!!

Resting.

Why is it that everyone wants me to rest, and then when I stay in bed until noon, my family wants to know why I’m still in bed? Isn’t that what I’m supposed to be doing?

I am resting and wondering when I’m going to have the energy to do anything again. It’s a real catch 22. Am I tired because by body and blood counts are totally wiped out or am I tired because I haven’t done anything for the last few weeks? Or maybe a combination of both? I have to say, I sure am sleeping well. I could sleep and sleep and sleep. No problemo. I’m asleep for 10-12 hours at a time and could still take a nap during the day. So, resting is not an issue. But getting back to doing something is a challenge. I’m going to give myself another day of doing nothing, an easy Sunday in front of the fireplace, and then check in with my nurse tomorrow and get moving again. Just a little bit at first. A nice short walk with the dogs. Not enough to get short of breath but enough to get the blood moving. I feel like I need some activity to get my body healthy.

Every day is a challenge. I have one more day of neupogen, so hopefully by tomorrow I’ll start feeling better. The neupogen really makes me feel crummy and makes my bones ache. I am not sure if I get to get out and about this week or if I am still confined to my home until they run my blood levels again, which isn’t until Thursday. If I’m confined to my home, that’s okay. It’s not been that bad. In fact it is sort of liberating to not have to go anywhere and not have to do anything. I don’t think I’ve ever been in that position in my adult life. I have always had responsibilities to do something everyday, whether it be groceries, laundry, cleaning…there is always something. I don’t have to do anything. I sorta like it. I can’t say I could get used to it, because I know that I’m not a sit around forever type of girl, but for now, its okay. I’m learning how to be happy without constant activity.

So for now, I rest. My goal is to get my body healthy enough to start chemo again, which is crazy. I want to get healthy so I can do all this again? Am I nuts? Sometimes, I think I must be, because why would I want to put myself through this three more times, but if that is the way I am going to get rid of the cancer, than I am all for it. Lets rock n roll. If all goes well, I’ll be done by March. It will be a spring worth celebrating!

Reprimanded to my Home

If you remember, I was supposed to have 6 rounds (12 doses) of chemo and then we would do Round 7 for “good measure.” Well, this “one more round for good measure” is not working out so well for me. It has landed me in the hospital and has now confined me to my home. If my oncologist ever wants to do “one more round for good measure” I’m just going to have to say no.

I had my blood levels checked this morning and the GOOD news is that my platelets are up to 44. While that isn’t exactly a stellar number and is a far cry from a normal count of 150, it is a heck of a lot better than 8 where I was at risk to bleed to death! I’m still at risk for bleeding at 44, but I’ll clot eventually, so as long as I don’t get in a car accident or have a major head trauma, I should be fine. I need to be cautious, but not live in a bubble. Also, the fact that I have 44 means that my body is finally starting to produce its own platelets and I don’t have to depend on the kindness of donor platelets. That is great news. Hopefully by next week’s blood checks I’ll be up over 100.

The BAD news is that my white count has bottomed out again and I am severely neutropenic. That means I’m at risk for infection and I’m back in that bubble. I cannot be in public, so any activities that I had planned for the weekend that involved being in the general public are out. I don’t have to be hospitalized, but I do have to stay home and away from people.

I had a busy weekend planned too. I was scheduled to do the curtain speech at the Nutcracker this weekend as a member of the Mid-Columbia Ballet Board of Directors. I had already worked on memorizing the speech, because I always do it sans script because I think it is more personal that way. It is tough to hold a microphone in one hand, a script in the other and still have personal contact with your audience. Luckily, I was figuring this might happen, so I had given the producers a head’s up to have a back up ready for me. So Joel Rogo (owner of the dance studio) has dusted off his tie and will be handling the curtain speech this weekend. I also won’t be able to attend the Nutcracker as planned, and will be missing the performance for the first time in more than seven years. The Kadlec Holiday party was scheduled for tomorrow night, so I’ll be missing my company holiday party. Then there is the shopping. I have Christmas shopping to do. Christmas isn’t going to be happening if I can’t go shopping!! So my bone marrow better get back on track. I have things to do!!

Looking at the bright side, I get to stay home and catch up on movies, read books and rest, rest, rest. I am still pretty tired and the shots to improve my white count make my bones hurt. So I will embrace this coveted rest time. How many people wish they could take a break from the hustle and bustle of everyday chaos and do nothing for a few weeks? So eat your heart out all of you crazily going from one activity to another, caught up in the holiday madness, I’m going to go take a nap.

Besides. There is always online shopping. :-)

Keeping the Faith

I had a dear friend in Wyoming send me an email sharing how angry she was that all this is happening to me. It made me sit back and think…am I angry? And if I am angry…who am I angry at?

So I searched my heart and soul and realized that anger is not an emotion that I harbor anymore. Not at anyone. I’d be lying if I told you that I have not had my moments of anger as I screamed “why me” at God for this injustice. But somewhere during these months of sickness and these times of despair I faced the anger and released it to the winds to carry to the four corners of the earth. I surrendered it to God. Anger eats me up inside and I realized that it is an emotion that was more harmful to me than the cancer. And as I looked at why I was angry it became apparent, what am I angry about? There are millions of people that have it worse off than me, who are starving, living in poverty, who couldn’t even begin to get treatment for the most basic of medical needs, much less cancer. I live in a place and in an era that allows me access to the highest standard of medical care available. If there is a way to beat this disease, I have been given the tools to beat it.

It’s hard to look at the “bright side” when battling a life threatening illness, but there is always something to be gained, if one is willing to take the time to open their minds to the possibilities. I have gained a knowledge and awareness of my place in this world and my impact on the people around me. I have been given the opportunity to reach people that I don’t even know through this blog and to share my story. I have been allowed the honor to encourage others and to instill hope into their lives. Cancer has given me the gift of immeasurable love. I don’t think I ever realized how many people love and care about me until this crisis struck. Then I looked around and there were so many friends reaching their hands out to lift me up. I truly had no idea. How could I even begin to entertain anger in my soul with all the love in my life? Sure, I could be angry. But I’m not. I’m tired of the battle and sometimes I get sad and my heart fills with despair, but I am comforted by the treasure of friends who continually overwhelm me with their kindness and their compassion.

God has a plan. We just don’t see the big picture. How can we? We are just one little cog in the wheel of the universe and it is beyond our comprehension to understand how our lives, our strife, can affect the whole. But with faith, lemons can create lemonade and joy can be found in the midst of the sadness. Faith can carry us through a myriad of crisis; we just need to look upward, not inward.

So it is in my life as I keep the faith and I move through my day with the hope of being cured. I worked for a few hours yesterday turning everything over to Wendy and allowing myself to take the remainder of the week to stay home and rest. And rest I do! I am so tired and I just want to sleep and sleep and I have allowed myself to do just that. When my platelets were checked yesterday they had dropped down to 23, so they are still going the wrong direction. The only thing I can do is rest and hope that my bone marrow starts working again producing platelets. We are going to check my blood levels again on Friday and I am praying that the numbers come up. If not, then there are more transfusions in my future.

This latest issue has made me sit back and think about my treatment and my need to focus on my health. I need to take the time to get well and put my health as the number one priority in my life. I have decided to only go to work for a few hours next week to see what else needs to be done and then to take the rest of the month off to strengthen my body and prepare for the next rounds of chemo. When I go back to work it will probably be for only two days a week. The next rounds are going to be important; I want them to be my last.

I am on the mend. I just need to get these darn platelets up. In the meantime I rest. And rest. And rest. And rest.

Bak in Front of the Fireplace.

It’s a bitterly cold morning outside, only 10 degrees, but it is warm in front of the fireplace. It is so nice to be back in front of my fireplace, now richly decorated with its festive stockings. I’d like to say that I’m feeling all better and everything is just hunky dory, but I’d be lying. I am very tired and my body feels weak, but my spirits are good. Being in the hospital was not the greatest experience of my life, but I learned a lot about the affects of chemo on my body and how to treat those side effects. I thought I’d explain some of this medical jargon, so maybe it will make more sense to you when you read about it.

Platelets are what make your blood clot. Without platelets you would bleed to death. Did you know that transfused platelets only last in your body for a few days and the ones that are transfused are used up really fast when you are as low as I was. That is why it took me so long to go to the ER on Saturday. I had received two units of platelets on Friday, so why would I need to go to the ER? In my mind I thought I just needed to wait it out and the platelets would eventually “kick in” and the bleeding would stop. Well, that isn’t how it works, and now I know. When platelets are falling as fast as mine were the transfused ones are used up really quickly and my body isn’t making any to replace them, so even after a transfusion, the platelets can get even lower. Transfused platelets just don’t stay in your body that long, maybe a few days, and then your body has to start making its own. I ended up getting six units of platelets, two on Friday, two on Saturday and two on Monday. For some reason, when I get platelets I react with fever and chills, so a platelet transfusion isn’t very fun, but I’m sure glad when the bleeding stops, and my counts come up so I don’t have to worry about bleeding to death.

Red cells aren’t used up quite as quickly. My red count was low, but not as dangerously low as my platelets, and even they continued to fall after the transfusion. The red cells carry oxygen. So when my red cells are low, I am weak and short of breath, my heart rate is high because it has to work so hard with less oxygen. I ended up getting five units of packed red blood cells, which is high concentration red cells. Its nice when the red cells kick in because the energy comes back and I can walk up with stairs without my heard pounding out of my chest and feeling like a ran a marathon. I still get a little short of breath on the stairs, but its getting better, so I know my counts are coming up.

I have spent the last week neutropenic, which means I don’t have the white cells that fight off infection. When you are neutropenic, they don’t recommend that you get out and about at all since you are susceptible to just about anything. They have been giving me shots called neupogen to increase my white cell production. I have one more shot today, and hopefully that will be it. The neupogen makes my bones ache since it is stimulating cell production, so the neupogen is pretty miserable, but necessary.

I am not sure when they are going to check my blood levels again. When I go in today to get my neupogen shot I’m going to talk to Michelle, my chemo nurse, and ask her when we are checking blood levels and when I can resume normal activity. I have realized that I need to find a way to get my work wrapped up and take some time off. I am not sure how to strengthen my body and get my bone marrow back to normal producing platelets and blood cells, but I am sure that rest has a lot to do with it, and that is not something that I am very good at doing. I have realized that I probably need to take some significant time to rest and recover. Otherwise, I’m never going to make it through the next round when we start up again at the end of the month.

The only good news is that if I’m this sick, the chemo is working. Its killing all the cells and hopefully, the tumors and cancer cells are dying even quicker than all my good cells. It is certainly a balancing act. Only kill enough to keep me alive. What a crazy dose of medicine!

Home Sweet Home

My nose stopped bleeding. Thank God. I never realized how much I appreciated breathing through my nose until I couldn’t anymore! I had a restful night last night, at least as restful as one can have when they are in the hospital, and my nurse was nice enough to wait until 4:30am to take my vitals this morning and the phlebotomist didn’t come in until 5am to take my blood. So I really got to sleep in, at least by hospital standards.

I was blessed by Angela Ball coming by this morning with a cup of Starbucks and a pumpkin scone on her way to work at 6am. Wonderful way to start my day with a visit from a dear friend and some much needed caffeine. The coffee here at the hospital leaves a lot to be desired. I was graced with a steady stream of visitors throughout the morning. I am humbled by the number of friends I have and how many people care for me and are praying for me. It the reason I keep persevering and am able to make it through this treatment as well as I have and with as good of an attitude as I have, because of the people supporting me. They keep me going and going and going, just like the energizer bunny. My friends energize me.

Dr. Rado also came to see me this morning, what a treat to see MY doctor, not some random physician that gets assigned to you at the hospital. I was scolded for not calling him on his cell phone this weekend when I started having problems, and I was firmly reminded that I am not only his patient, but I am also his friend, and I should be calling him if I need him. Duly noted. Hopefully, I won’t be in this position again! I don’t really want to go through this another time, it was miserable. Dr. Rado agreed to let me go home after I received another two units of platelets and doses of neupogen today and tomorrow.

It is so nice to be home. I got excellent care at the hospital, the nurses were amazing, but I was so ready to be in my own home with my puppies and my kitty and my daughter and my own bed. I got home about 1:30 and went straight to bed for the afternoon. I am so tired and weak and will be back to bed early this evening. My puppies were very happy to see me and were more than willing to snuggle up and take a nap with me today.

Thanks for all your prayers while I was in the hospital, without your prayers; I’d probably still be there.

Now I wait.

Anyone who has been in a hospital knows that it is no place for sick people and certainly no place to get rest!

I got to the Kadlec ER at about 12:30 on Saturday. There are definite advantages to being a neutropenic cancer patient and one of them is you get taken to a room right away. When I arrived, I told the nurse “I am a patient of Dr. Rado’s and I am neutropenic.” This allowed me to bypass all the sick people in the waiting room. I went straight to a room…no triage…no waiting…no muss…no fuss. I spent the next five hours in the ED getting blood work done, receiving platelets and having my nose packed, which was an absolutely lovely experience. Having a “nose tampon” shoved up your nose is an experience everyone should have at least once. Makes one appreciate breathing.

Originally, they had said I was going to the CDU for my platelets, which meant I would be here for a little while, but not actually admitted. Imagine my surprise when I found out that I was not going to CDU, but was being admitted until “at least tomorrow.” ‘At least tomorrow’, what the heck does that mean?! I just needed platelets and then go home, right? Well, I guess not. I was informed that I was in the hospital until my platelets came up and my bleeding stopped. This is when another advantage to begin neutropenic came in. I had to have a private room, so I ended up on the surgical floor, which are nice big private rooms, with individual baths and showers, so much better than the medical floor, which desperately needs to be redone.

Still, not a place to rest. I finally got to my room about 6pm and ordered something to eat, I hadn’t eaten all day. I found it very hard to consume food while my nose was bleeding, so I really hadn’t eaten much for three days. Just about the time I was getting my food, it was time to go get a chest x-ray. So I was transported to x-ray, got back to my room, started eating and it was time for IV antibiotics and a blood draw. Finally, I got to eat. And tasty soup it was!! Maybe being so hungry helped.

I was getting blood transfused until about 11pm and my last blood draw was at midnight. At that time my platelets had finally come up to 42, but my hemoglobin had not increased at all. Finally I got to sleep a little bit, in short one hour bursts. The bed is terribly uncomfortable and the pillow, awful, and the hallway noise, not to mention the incredibly bright red clock on the wall that counts out not only the minutes, but the seconds. So you can see second by second all the minutes you are not sleeping! Very handy.

After only four short hours, it was time for my vitals. Then at 6am another blood draw and IV antibiotics. At 8am another blood draw…are you getting the picture here? No rest. Rest is not allowed in hospitals.

Now I wait. I wait to see if the doctor is going to release me. My latest levels shows platelets down just a little to 39 but my hemoglobin is finally starting to come up. I think my nose has finally stopped bleeding and I hope the doctor will yank this dang nose tampon out soon! It makes for difficult breathing, and it looks funny.

I’m ready to go home. I promise to keep resting if they would just let me go home!

Need your prayers!!

Well, it’s been a hell of a week. I’m in the hospital, trying to get my platelets up above an 8. Normal is 150-400. On Thursday morning I knew there was something wrong when I wasn’t able to get my nose to stop bleeding. So I headed over to the cancer center to have my blood drawn and about 2 hours later got a call that my platelets were critical low, only 15. I was also anemic and neutropenic (no white cells). So I needed a transfusion of platelets and packed red blood cells. We talked about doing the transfusion on Thursday night, but the only way to do it would have been to be admitted to the medical floor, and I wasn’t too keen on that, so I promised I would stay home, be careful and do my transfusion first thing on Friday morning.

In retrospect, that wasn’t the wisest decision. My nose started bleeding again Thursday night about 10pm and bleed for the next 10 hours. It was a very very long night. The blood just would not coagulate. So on Friday morning I felt horrible, absolutely horrible. But I dragged myself up, stuffed my nose with tissue, armed myself with a box of Kleenex and headed over to the hospital. After two bags of platelets, the nose bleeding minimized and almost completely stopped. I thought I was in the clear.

Then the fever started. My fever started creeping up and by the time I left the hospital my temperature was 100.3. At 100.5 I have to call the doctor. So I went home and was feeling really crummy and went to bed. I woke up about an hour later and checked my temp, up to 101.8. So definitely going the wrong direction. I called the cancer center. They wanted me to go get a chest x-ray, blood and urine tests to see if I had a neutropenic infection. (blood infection). The chest and urine came out fine, so they sent me home and let me know that they would contact me on the blood cultures, which take 24-48 hours. So I went home and slept and slept. My fever finally broke about 3am and by the time I woke up at 7am I was weak and tired, but feeling much better. Then my nose started bleeding again. And it bleed and bleed and bleed. No matter what I did I couldn’t get it to stop. So by noon I called the doctor and asked him what to do. He said, “head to the emergency room”, so I did. At the ED they ran blood test and found that instead of my platelets going up, they have gone down, and now are at 8. My hemoglobin has also gone down from 9.1 to 8.9, so not a lot, but they are headed the wrong direction! So, unfortunately they admitted me to the hospital until I can 1) get my nose to stop bleeding and 2) get my platelets headed in the right direction – UP. I am in for at least 24 hours, maybe longer.

At least I was admitted to the surgical floor, 4th floor, which is a really nice private room. My nurses are so nice, in fact everyone has been super nice, caring and helpful. I know they only want me to be safe and healthy; I just hate being here at the hospital. They have these things on my legs to keep my circulation going so I can’t get up and around without the nurses help, which stinks, really takes away my independence.

So, my faithful prayer warriors, I am asking for your prayers. Pray that my platelets come up and that I get to go home tomorrow. I want to go home. I don’t like being here in the hospital. I want to get healthy and start my recovery.

Finding the Lost Woman

I have the most amazing friends. That really struck me the other day when I received another remarkable card of support. When I needed it the most, this card was there, encouraging me, cheering me on, helping to lift my head up out of the darkness. And the darkness is where I feel I have been.

Cancer takes me into this terrible dismal place where there is no joy, no laughter, no sound at all. It is not only the silence that surrounds me, but it is the total absence of light. Not even a pinprick in the distance. Absolute utter darkness. All that is good and right and joyful has been sucked out of the room leaving me in a place I no longer recognize as home with a person I no longer recognize as me. I looked at myself and realized that I don’t know that person looking back at me in the mirror. The person that I know is loud and gregarious and loves to talk and visit with her friends for hours on end. The woman that stares back at me is solemn and serious, preferring to remain alone in a solitary existence. She is tired and irritable, short tempered and sad, and yet her friends still loved her and support her, lifting her up, knowing that person that they love is still inside there somewhere, trapped in the bleak underpinnings of cancer.

My friends remember the person that I was before the cancer took it toll on not only my body, but my mind, my life, my essence as a woman, and they love me in spite of the person that I have become. They are kind enough to not ask where she is, or when she’ll be back, but soldier on with me secure in the knowledge that she is in there somewhere, lost and lonely, screaming to come back to her life. I realize how much I miss that woman, that girl, that smiling, laughing, loud mouthed, talk-incessantly without stopping person. I realize how much I want her back. And I look into the eyes of my friends, and I see her reflected back at me and know that she is still here; she is just trapped in the shadows of the disease and imprisoned in a jail of hopelessness and despair.

So I reach deep inside, beyond the darkness, the silence, the desolation and isolation and I see her. She is not lost, she is there, simply waiting to be set free again. Waiting for the opportunity to step forth and become the lead actor in this play called my life. My friends, the salt of the earth and the keepers of my smile, knew all along that she was still there, and yet they patiently await her return.

I am committed to return her to me and to you. I realize that I have not been the person that I want to be, and I desperately want that woman back. Only I can coax her back into existence. So, I am putting a smile on my face, laughter in my heart and words of joy on my lips. She is coming back, hold on to your hats!