The Train is Back on the Track

Just a quick post to let you know that all is well in the Land of Transplants. I was very excited to receive a revised schedule of “coming attractions” last night during dinner.  As I predicted, we are one week off from the previous schedule.

I will have an appointment with Dr Arai on Wednesday and I will have my central line put in on Thursday the 31st.  On that day, I begin the shots to increase my stem cells. Erin and I have a fun day planned for the 4th, when I will be having my cells harvested, for about four hours, while I am hooked up to a machine. (No, really. It will be fun. I can’t help but smile when I am with Erin.). I don’t know how many days it will take to complete the harvest. They say it is one to five days. I am thinking I can do it in two.

My date to check into Stanford is the 15th. I hope the nurses are ready for me. I’m not sure they know who they are dealing with, here. And that’s all I’m gonna say.

Since I had the colonoscopy on Tuesday, we have had a few e mails with Paige, the nurse coordinator who works with my doctor. I have to say, we might have gotten a little “pushy”. I mean, Kimmie’s life is on hold and she wants her transplant, OK? So, I sent an e mail apologizing to her for being a pain in the ass. I am quite relieved to say she e mailed back, saying that in no way did I win the “most difficult patient award”. I’m glad. Because I’m going to tell you, that when this whole ridiculousness (the disease thing) started, I made a decision. I decided I would try to be the nicest patient in the doctor’s office/hospital/lab they had all day. And it has served me well. I am running the risk of being really sappy and goody-two-shoes here, but this is true. I have had some fun times at my appointments. I have made some good friends. This whole process has just not been that bad. Because I decided it wouldn’t be!

So there you have it! Smile! Try to have fun out there! Life just ain’t that bad! And I am getting my transplant!   YAAAAAAYYYYYY!

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Family Bingo. And that Other Thing.

(Before I get started, credit goes to Joanne for the bingo title, because she might read this!)
Cousins Weekend had arrived! My sister Joanne and I had planned to drive down to Santa Cruz together, as she was going to be picking me up from my meeting with my transplant doctor at 4, after her own meeting.  This way, Howard and I did not have to take two cars to Stanford. Something positive came out of the appointment being cancelled.  I was able to go with Joanne to her meeting in Pleasanton. All I had to do was kill time shopping while she was busy, and our weekend started a few hours earlier than it would have!
Now, I am capable of spending extended periods of time in a mall without making a single purchase. But Friday, I had two things I don’t always have: money and a mission.  I had my own little “pajama party”. Most of the pj’s at Penney’s were on sale and I wanted to stock up for my hospital stay.
Pleased with my purchases, we were on our way!
PJs
So, how did the weekend come about anyway?
It isn’t something we do all the time. This was the first…and I hope not the last.
It all started at our family reunion for the Italian side of my family back in a March. We were celebrating the arrival of my grandfather at Ellis Island in March of 1914, so it was the 100th anniversary of the Ottone’s in the US. Several of my cousins and I had become Facebook friends and we had been chatting online. At the reunion, we talked about getting the girl cousins together, but we didn’t set a date.
When I posted about having the transplant coming up, I was seeking out people to have fun with, before the process started. My cousin Maria jumped in and said we should really do it. So we came up with a date for July. It was another positive thing coming from the land of rare disease. These silver linings are out there and they are not hard to find!
Maria graciously offered her beach home. We cannot thank her enough for hosting this magical weekend. What it turned out to be was a fabulous time to get to know some people we had been related to all our lives, yet hadn’t had the chance to really know.
My Italian grandparents had five children, who went on to produce the next generation numbering 24, 13 of which are female. We got together at family gatherings when we were young, but most of us did not see each other outside of that. We did not go to the same schools, and there was quite an age gap between the older and the younger cousins. I hardly talked to my older cousins. I was one of the little kids and was pretty non-existent in their eyes. I don’t blame them. If roles  had been reversed, I’m sure I would have done the same. Fast forward about 50 years, and it’s amazing how much closer in age we are now! A five year gap means nothing. This was an opportunity to get to know some pretty amazing people. I had been very excited about it and it was all I had hoped for. There were eight of us in attendance.
Eightsie
When I was expecting my second child, I talked to my mom about her having 6. I was so in love with Trevor, my first, that I couldn’t imagine feeling the same way about another child. But she assured me that the heart expands to accommodate all of the love you will have for all your children. She was right, of course. I think about that a lot now. My heart has expanded many times over. I cannot believe the amount of love I have in my life.  As I continue to connect with people I have known, but of whom I’ve lost track,  and meet new people, I am often overwhelmed to the point of tears, with the good fortune I have.  I have so many incredibly wonderful people in my life.  And this weekend was another opportunity for my heart. We talked about our early memories, our lives today, our kids, our jobs. There were family stories, a few secrets and a few surprises. It was a low key weekend, with no pressure to do anything but be together. We ate, we drank, we laughed. Thank you to my sisters, Marilyn, Susi and Joanne, and my cousins, Maria, Joan, Leslie and Laurie. I found the perfect sign at a shop in Capitola to summarize, which I gave to Maria. I certainly can’t tell all!
BeachPlaque
On the last day, Joanne and I went to Salinas (not exactly on own way home) to see our dad. Visits with him are hard for us. We remember the incredibly active and social man he was late into his 80’s. He is 92 now and barely knows who we are. He no longer speaks very much. But his eyes lit up when he saw us and that alone made the extra hours on the road so worth it.
Daddy
That night, Joanne picked up our brother Gerry from the airport, as he was visiting from Wisconsin this week. Monday I got the pleasure of going on a hike with him and having him over for the afternoon. Joanne had made a comment on Facebook about “sibling bingo” and filling her “card”, as she had seen or texted or talked to all of the sibs in one day. Thus the title. I can say that with the exception of my brother Bill, I had a full family bingo card for the week, even though we had not all gathered in one place. I didn’t get to see Gerry today as I was busy, but I’ll get to see him again before he leaves.
Gerry
And what was I busy with today?
It was colonoscopy day! So exciting! The truth is, having been warned on how awful the prep for this is,  I have to say it it was not as bad as I thought. Now, mind you, it was unpleasant. I did not enjoy it.
NoteColo
But it just goes into my file of invasive procedures, along with all the others that I keep in my head. I’ve gotten through everything. I will get through more.  I was highly motivated to get it done. As usual, I was treated extremely well by the good people at Stanford. The procedure went off without a hitch. I passed (no pun intended!) with flying colors and the results are on the way to my wonderful insurance company now.
This transplant should be back on track! I should know soon when everything is going to start again. I am ready!

A Bump in the Road

There had to be one coming. Things had been going smoothly, and that’s not at all normal for my life! I’m talking about insurance approval.  Had I been told a month ago, when I submitted the other required documents, that I would need to have the results of a colonoscopy submitted, I would have gotten one. (I should have had one by now, but I haven’t!) Now, we are down to the wire and my insurance has not approved the transplant. As of today, all of my appointments have been cancelled.

The good news is that I am going in for the procedure next Tuesday, thanks to Stanford, who never seems to let me down. (The local guy we called was going to see me in a few weeks or a month) As soon as the results are in, and let’s hope they don’t find anything funky, we can reschedule everything. Although I will not be following the schedule I had planned, it’s going to be OK.

Why would I be upset anyway? Well, there are lots of reasons. I am counting the days here. In spite of my quest to live in the moment, and not “wish my life away”, I want and need to get this done. I am in limbo right now. I feel like my life is on hold until I start this. I want to move through this experience and come out the other side, ready to get on with my life. And it’s not just about getting done. I want to fully experience this process, even with its expected unpleasantries. It is my hope that I can help others through my experience. I have volunteered to share my story with the folks at the myelomabeacon web site. So, I’ve been waiting for it to start.

And now, there is a delay. On the positive side, I had no plans! No races I’m training for (obviously!) and nothing I need to get to in September or October. My main concern is with the people helping me, and their schedules.  But of course, they understand. I was with two of my key players and dearest friends when I got the news. They assured me, we can roll with this. It will all be OK.

rim

A little glitch in my day, yes. I will have at least a few more days to work through before it all begins. I have to say, apart from the drama surrounding this latest wrinkle, it was a great day. Howard and I have worked out an agreement as far as exercise goes…I can do it.  I started it off with a run on the rim trail at the Lafayette Reservoir, with six of my favorite people. We saw the beauty of the newly risen sun as we stopped to take in the view from the hilltop. Later, after getting some work in, four of said favorite people and I headed to Oakland for a yummy vegan lunch. The afternoon was spent visiting with our friends from Texas, Rich and Cynda and their boys. Of course, this is what is really important. Connecting with people. When I remind myself of this, I come back to earth. Next up is “Cousins Weekend.” A chance to spend the weekend with a bunch of my female cousins and all three of my sisters, in Santa Cruz. I am excited! Very excited!

Deep breath. It’s going to be OK.

(Photo credit Pete Beck)

A year later…

I didn’t know I would get to where I am today. But I’m really glad I did.  I posted this on fb on July 16th.

Swing9

 

It was a year ago today at 1:00 in the afternoon.
I was finally getting my kidney biopsy results.
It was a brilliantly sunny day.
It was the birthday of a good friend.
So I didn’t tell him until the next day.
Because it wasn’t good news.
My life changed in an instant.
It’s now divided up into two segments, the before and the after.
But it’s not about good vs bad, or happy vs sad.
It’s about who I was and who I choose to be now.
Because, although I was terrified at first,
I realized soon after that I was given a gift.
I’ve always felt I had an appreciation for what it is truly important in life,
but now there is a clarity that wasn’t there before.
I’ve embraced living in the moment.
I feel I have a sense of purpose.
I am in love with loving the people in my life and being loved back.
And I’ve found that a steady stream of laughter makes for a joyful life.
Yes, there are moments when I want my old life back.
But I can wish for what was, or I can celebrate what is.
What is, is a pretty wonderful thing.
I’ve never been one to pass up a good party.

Beauty and the Beast

It’s getting closer now. The transplant.  I can feel it. It had seemed so far away. Now things will start happening late next week.

I am very well informed. I have known this transplant was a possibility for almost a year. Since the decision was made in May, I have done my homework. I know this procedure can be tough to get through. While I don’t know exactly how I will do and if there will be complications, I do know exactly what the plan is. I am ready. I have never been scared about this and I am not scared now. However, the mind is a mysterious thing. Since Friday I have had a vague sense of fear. It’s more of a physical sense than a mental one…I can feel it. I know I have felt this way at least one other time. In 2010, I almost had surgery on my broken finger and the 24 hours before, I seemed to go inside myself, seeking a quiet place to take it all in. I was nervous about it. It was ultimately cancelled as the surgeon decided it would heal on its own. But it was a close call, and I remember that strange way I felt. The first step in this next adventure is over a week away and I guess I have that feeling now because this is a much bigger deal.

On July 24th, I will have my central line put in. It’s a catheter that will go into one of the large veins near my heart. It will be used for blood draws, transfusions, and the actual transplant. This way, I will not have to have an IV in my arm the whole time. I could have the central line for as long as 6 weeks. After mobilization and apheresis (the collection of the cells), I get a short break before being admitted on August 8th. Chemo is scheduled for the 8th and 9th and the transplant will take place on the 11th. Oops, I have forgotten to explain how this works. I’ll back up a bit. This is an Autologous Stem Cell Transplant. My own cells are harvested and used. In theory, these cells are healthy. After my immune system is wiped out by chemo, and the bad cells are gone, it is hoped that after these cells are put back in, they will begin to rebuild a new healthier system. It is kind of a “reboot”. The goal is long term remission. I will be in the hospital 2 or 3 weeks and then I need to stay near by until at least Day 30. (Transplant day is referred to as Day 0) When I come home, I will go about the business of recovering. I will not be able to do a lot of things for a long time. One is to care for animals. Last I checked, that is how I make my living. So there you have it. This is life changing for me…at least in the short term. That’s why I am trying to cram all of 2014 into 7 months!

I need to do the things I want to do very soon. I’m running out of time. I’ve been eating desserts. I’ve said yes to every dinner and coffee invitation that I can. I’ve been to the movies twice now since May…incredible as I go whole years without doing that! I’m going to go out and run and bike and swim at least one more time…I have to, whether I am supposed to or not. And through it all, I am trying to take in any joy and beauty that I can.

Flowers

I planted flowers this weekend. I haven’t done that in ages. I am not sure if it is the need for beautiful things around me, or the need for dirt. The more I think about it, the more I realize it must be the dirt.  I will not be allowed to garden for 6 months. I must garden now!

I have told my son Trevor, and his girlfriend Brooke, that I would appreciate it if they would hold off on collecting the eggs from the chicken coop. That needs to be my job for now. It is a ritual that I really enjoy. Even when someone has already gotten the eggs, I take special care with my “girls” each day to clean the chicken poop out of the nesting boxes. I won’t be able to do that for 6 months either. I won’t be able to collect the eggs. Livestock care is completely off limits.

image

 

I’m feeling all this sense of urgency and yet I feel like I’m moving in slow motion. My regular life goes on. I have to work. I have to get the business ready for my absence. I have doctor appointments.  I have to occasionally clean the house. (Although I do not feel the need to dust and vacuum, more activities I will not be able to do…not sure why that is…)

Still, I will continue to search for the beauty in my life while I can. I want to breathe in all the fresh air I can and feel the sun on my shoulders. This “Beast” of a hospital stay is a comin’ like a freight train. I can hear the first few lines of “Band on the Run” playing in my head. “Stuck inside these four walls…”. Although I won’t be “sent inside forever” and I’m quite sure that I will see someone nice again, I know I am facing a challenge.

 

Honesty is best…

I have wanted to write the last couple of days, but I haven’t been in the mood. There is certainly a lot going on around me. Why haven’t I sat down and cranked out a new post? My blog is new, so this should be exciting for me. Part of it was I wasn’t sure whether to play catch up on some old stuff, or write about the latest. And part of it, the real reason, was that I just wasn’t happy.

If my blog is about the silver lining, then there is a feeling I need to find it, live it and roll around in that glitter all the time. But I can’t. Because no matter how good life is, it isn’t that way every moment. Recently, a friend reminded me that that just means I’m human. When I’m down, I’m just being a real person. It’s OK to show it. I know she’s right. Thank you, Paula.

I’ve been a little upset since the last meeting with the counselor we are seeing at my oncologist’s office. I’m supposed to be trying to gain weight before the transplant. I’m a little thin and they are worried I will lose more weight during the process. Being told to eat more is fun…until they also tell you to stop exercising. I’m sort of passionate about exercising and it takes care of my needs to be social as well. I don’t feel like eating as much when I don’t exercise. And now let’s throw in that I’m not supposed to be drinking any alcohol either. Nothing like taking all the fun stuff out of my life at once. I know it’s for my own good. I know it’s temporary, but I had wanted to have some serious fun before I have to stop everything. I had plans. And I feel like I’ve been ganged up on. So, there you have it. That’s how I have been feeling.

But you know what? I’m better now. Today was a great day. I had to start work very early this morning so we could leave for Stanford by about 11:30. I had several tests that needed to be done and it was tightly scheduled. I was kind of dreading the bone marrow biopsy. It was to be my third one. The first one last summer really hurt. The one I had in April was better. Today, I was so well taken care of, it was almost bordering on fun. Great nurses, lots of lidocaine… they made sure I was comfortable the whole time. I realized I was laughing and having a good time. I realized I had been doing that since I arrived at my first appointment. I was back. And it was good to be back!

KimandDrill

(Pictured above playing with the drill they use for the biopsy)  I’m very happy to say that this was done in the ITA (the Infusion Treatment Area) where I will be spending a lot time coming up. Everyone was so nice. I’m actually going to be excited to come back and see them again. One of the nurses seemed to have a quirky sense of humor. I wouldn’t know anyone like that, now would I? I took an instant liking to her. When things don’t suck during this transplant, it’s going to be fun. I can just feel it. My life is pretty good. Wow, it’s nice to see the sparkle again.

But I’m going to try to remember that I can write even when the finish is a little dull. Being happy is a work in progress. And a little down time is OK as long as you can start laughing before too long.

Let’s Get This Party Started!

Where am I and how did I get here? It’s been almost a year since my life changed. Actually, it was a little over a year ago that I found out something was wrong. I just didn’t know how wrong…until D-Day. Diagnosis Day…July 16, 2013.

I’ve always been pretty healthy. By that I mean that I could do things like running 50 miles on my 50th birthday. I wasn’t always doing crazy things like that, but I’ve always had it in me. Nothing had really changed in 2013. I just had persistently swollen ankles.

I’m a runner and we can explore that whole thing later, but my first doctor visits in 2013 were to deal with my case of plantar fasciitis that was ruining my running life. Finally after realizing that both legs should not be swollen, I sought medical advice for that. I was in denial though, so it wasn’t until after being urged by family and friends.

Some lab work that indicated low protein in my blood led to my urine being tested. It was found to be full of protein. The nephrologist was the next step. I’ll spare you the frustration of trying to find a doctor with new health insurance.We had just switched from Kaiser when this all started, and had we not been pushy, I might still be waiting to be seen! I had a kidney biopsy in early July (exactly a year ago today as I write this!)  and the results took an extra long time. Instead of getting them on the 11th, I waited an extra 5 days. I was frustrated. Which little kidney disorder did I have? What meds would I be on? Would it interfere with running? That’s all I wanted to know.

Finally they called and asked that I come in the next day. I ignored the sense of urgency in the nurse’s voice, because I just wanted to get in there and get this done. The appointment was brief. I had something called “Amyloidosis” and it was “hard to treat”. Later in the day I realized that’s a code word for “you’re going to die from this.” She had told me not to google it because it would scare me.  I did, and it did. It turns out that she said that because most of the info on the internet is out of date. Treatments have come a long way. People live with this for a lot longer than they did a decade ago. Mine was found early while I’m still relatively healthy. So, that’s bonus points for me. But there is still no cure. It’s still probably going to kill me, eventually. Wow. That was not exactly what I was expecting to hear that day!

A bone marrow biopsy was done and I found out I have lots of bad plasma cells in my marrow. That means I have asymptomatic (or “smoldering”) Multiple Myeloma too. That’s a cousin of “Amy.” It’s cancer, and it isn’t curable either. Since the treatment is the same, no one made a big deal of it. They sort of forgot to tell me that the prognosis is way worse to have both. I learned that not too long ago from a published study.

So, I started chemo on August 12th. After 8 months, I got to have another bone marrow biopsy.. (They are super fun…not!)  Although the “light chains” in my blood are in normal range now, indicating success on the war against “Amy”, I still have a bunch of plasma cells. We discussed continuing chemo, but my husband, Howard, who is my biggest advocate and cheer leader and saver of all things Kimmie, wanted more. And I was ready to go along.

That more is my next adventure. It’s a stem cell transplant. I’m getting ready for that now. It will happen next month.

Strangely enough, I have felt fine throughout this whole thing. I run, I workout in the pool. I go to spin class. Had I not been continually injured, I would have run a marathon or 3 in the last year. Again, more on that later.

I don’t get it. I’ll never get it. I’ve always been a “Why not?” kind of person, instead of “Why me?” So, I don’t walk around thinking this is unfair. ^&*## happens, and this is my %%&*#. It’s just weird because I feel really normal. Having said that, I do feel I was supposed to learn something from all of this. I think I have. And I’ll be sharing that with you in the posts to come.

KimBananaSplit

Life is uncertain! Eat Dessert first!