My Sky Full of Stars

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Yes, it’s that Cold Play song. I kept hearing it before I went into the hospital and I’m happy it’s still on the radio, now that I’m back out driving again.

I think of my friends as stars in my sky. If there is one thing I learned from this transplant experience is that my sky is even more full of stars than I thought it was.

I read pretty much everything I can get my hands on about Amyloidosis and Multiple Myeloma. Even though I like to think I have a mind for science, the truth is I am easily lost when it gets too technical. So I gravitate toward real patient experiences. I was saddened recently when I read that someone had lost friends when they were diagnosed. Some of the people they knew just didn’t know how to react or how to help, and simply stopped communicating.  The scary part was that I read it again someone else. And again. I cried. I couldn’t imagine what that would be like. My friends have been with me every step of the way. In turn, I’ve been able to keep my life somewhat normal.  While I have felt like I’ve been on the receiving end of a lot of kindnesses, I like to think I’ve continued to give back, as well. Because although things have changed, nothing has really changed!

My last post was all about summing up the month I was gone, but I forgot something. Of the 31 days I was gone, nine of them were spent in the apartment in Mountain View.  I was required to have someone with me 24/7  to make sure I took my meds, ate properly and monitored my temperature. I felt it was asking a lot of anyone to take time out from their lives to help. It WAS a lot to ask, but I had no shortage of offers of help. I will be forever grateful to Paula, Erin and Joanne for stepping in to take care of me. I am also fortunate to have had Pauline and Jan, ready to help if needed, and of course to Howard.

I’ll tell you a secret though. I was looking forward to this time. It isn’t often that you get to have one of your friends, or sister, ‘captive’ with you. I had them all to myself. No one was rushing off to get home or to get to work or back to family. And while I know this wasn’t always easy for them, I loved the one on one time that we got to spend together. It was wonderful to have Paula and Erin all to myself during their shifts. And then there is my sister. Joanne and I are very close. We hadn’t seen each other in over a month, due to different illnesses that had conspired to keep us apart. Our time together was worth the wait!

Thank you to all of you, my brightly shining stars. To all of you who helped. To all of you who visited. To all of you who messaged me. To all of you who thought about me or prayed for me.

I live a life underneath a brilliantly colored sky that no fog can ever mask.

Thank you.

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Home, Sweet Home, the Real One.

It is with a touch of irony that I sit here writing in my “Will Run for Wine” shirt. For I am neither currently running, nor am I drinking alcohol. But wearing it makes me smile and there are thoughts of what is to come, as my life continues to get back to normal in little bits and pieces.

I came home last night. I didn’t realize how excited I would be until the Physician’s Assistant, “Lenny” gave the ‘go ahead’.  We had anticipated the release, so much so that we had packed everything up, including the food in a cooler and had returned the keys to the apartment. Nothing like a little confidence! I had thought we should come back to the apartment to get the food after the appointment, knowing there was also the chance we might have to stay. But Howard didn’t want to drive back south, before heading home, east, and it turned out to be the best plan. Once they said I could go, I couldn’t get back to Concord fast enough! So glad we had tied up all the loose ends at the apartment!

Below,  gettin’ the heck outta there!

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I’ve been thinking about this last month, and as strange as it sounds, I want to savor all the experiences I had.  What could have been a difficult month simply was not. I know no other way to say it. I had some really good times. And the times that weren’t….well, they were expected and due to the tremendous support I had, far easier than I ever would have guessed.

I went into this transplant as a relatively strong and healthy person. I know that was a huge factor in getting through the difficult parts. I know that not everyone goes to spin class in between the cell harvest and the transplant. Not everyone goes out for a run before going to the hospital. I’m fortunate. Very.

Physically I was in good shape, but more importantly, was my mental state. To explain it, I have to admit the method behind my madness. I like to make people laugh. I don’t know if I knew how much until Facebook came into my life. When I realized I would be going into the hospital, I figured it was going to provide me with lots of new material. So, I brought a few props along and proceeded to have a grand old time with them. In addition I brought some colorful lights for my room. It was bright and cheery in room 124. Smiles are contagious, and that was reinforced many times over while I was there.  To my friends who helped out with my posts, I will always be grateful. Paula, it was great ‘having a cigar’ and playing poker with you!  Pauline and Andy,  thank you for participating in the ‘field trip’ that my ten pets (foamboard cutouts) took to see me.

So, I felt pretty good, even when the side effects from chemo kicked in, and I was in a happy place in my head. But I don’t know if I really could have pulled this off without all of the people watching out for me. I had visitors, lots! Repeat visitors, who made a long drive to see me. And those who couldn’t kept me busy online. The texts, the e mails, the posts!  I was hopping!  I didn’t even have time to learn French.  OK, that’s a lie. Because I invested a major chunk of my life watching Breaking Bad episodes. I still have some recovering to do and once I finish Season 5 , who knows?  Apprendre Le Francis?  Il est possible de faire!

I’m back home now and what is next? Recovery isn’t over. It’s just begun. I feel really great!   I’ll admit I’m tired as the day comes to a close and the stairs are work to climb.  But I walked a brisk 2 miles this morning. It was a beautiful morning and to breathe it all in without a mask was priceless! I can’t wait to do more, but I know it’s baby steps for now.  I can’t run yet due to the blood clot and the blood thinners I’m on. I can’t drink yet, due to the effect it has on platelet counts, but honestly, I’ve lost my taste for it. It will come back soon enough. There is a time and place for everything.  And although it will be about three years before my hair is as long as it was,  I have no choice but to find the brighter side to that.  I am the mad hatter. I’ve got about 16 from which to choose every day!

 

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Again, I can not say it enough. I have been surrounded by love from so many people. Love is powerful. It is a force that cannot be stopped. I felt it from all of you. You were there for me. I can only hope to be there for you in your time of need, like you have been for me. I am forever changed. And I have you to thank.

4 Days out, and Fingers Crossed!

I’m not being a very good blogger. I had had high hopes for myself. I was going to update all the time, because let’s face it, I have had plenty of time. But I haven’t even posted that I’ve been back at the apartment since Tuesday. It’s now Saturday. I am hoping that was the last hospital stay for a very very long time!

Erin was my designated care giver on Tuesday when I got ‘sprung’. Her shift would have begun Sunday night, but I was tied up at Stanford, so we did not get to spend as much time together as we had planned. Still, we had a good time for the short time we were together.  Wednesday, we enjoyed a walk around the complex, which was about all I could manage that day. Erin is a great person to have by my side, whether running a 20 miler, or struggling to take a walk after the transplant!

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On Wednesday evening, my sister Joanne took over. This was big! Joanne had left on a cruise before I had gone in for the transplant and had come home sick with a cold and shingles. Then her husband Randy got chicken pox! Since I can’t be exposed to any of this, I felt like I would never see them again! And Joanne wasn’t too happy about it either. But at last, we were in the clear.

 

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Joanne had to take me to two appointments on Thursday. First was an ultrasound at 9:15, then we went back to the apartment for a while. We arrived for the 1:30, in the ITA, expecting to be put into one of the regular rooms, but were escorted to our own little private suite with an adjoining bathroom. At first we thought I was being protected from everyone else, but no, the room was to protect the other patients from me! I was now the town pariah! It turns out that a UTI I had been diagnosed with in the hospital was an unusual one and resistant to most antibiotics. But on the plus side, I was informed that should I need to be hospitalized in the next six months, I would be guaranteed my own private room. Although I am going to try very hard to stay out of the hospital from now on, I have to say I was quite pleased about that.

On Friday, we had absolutely nothing on the agenda. We got in two walks, which was good for me, as I am working on getting my strength back. We kept ourselves busy with several activities. What would two grown women do in an apartment all day? How about watching the movie Frozen, making chocolate chip cookies, and taking a trip to the park? It worked for us!

 

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I Can’t Decide Where I Want to Stay

It is amazing how busy one can be doing not very much at all! I think it’s time for an update. And another chick pic. Why did the chicken cross the hall? Details to follow.

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On Monday, it was quiet until the afternoon, when I was told my central line needed to removed. I would also be changing rooms.  My days of the private room were over, but on the bright side, I would be getting released on Wednesday. The line was taken out with a local, which was wasn’t bad, and they started an IV in my arm which would be there until a “PICC’ line could be installed. (Similar to a central line) There was concern there could be bacteria that had attached itself to the central line.  And Moving? I had so much stuff in that room,  including chickens and cats in all sorts of places, that I was anxious when they told me about the transfer.  But they had a ‘moving committee’ that came in and packed it all up in about 10 minutes!  Apparently they do this all the time. And that is why the chicken crossed the hall!

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My sister Marilyn came for a visit during all the craziness on Monday.

I was released on Wednesday. It was kind of exciting to get to the apartment where I would be a staying in Mountain View. And to smell the fresh air! Which I couldn’t really smell because of my mask, but it’s the thought that counts!

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Paula was my first designated care giver. We had a good time together, and she took great care of me.

As I was finishing the last 3 episodes of Breaking Bad that I had, Paula was intrigued by it too. So we started over, and I saw the first 10 episodes again! It’s the kind of show you want to share with someone and this gave me a buddy with whom to discuss it.

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Unfortunately, I started having pain in my right calf on Wednesday. It persisted and I could barely control it with Tylenol. On top of that, a few days later, I had a case of Saturday Night Fever! It persisted enough that the BMT nurse told me to go to the ER. She thought the odds of me being admitted were low, but they decided to keep me for 24 hour observation. When they found a blood clot in my right leg on the ultrasound they did, that meant a couple of more days! It is Monday morning. I am still here.

i could be in worse places. It’s nice to see my favorite nurses again, but I was hoping to see them in another setting, like the BMT reunion next year. It is not at all unusual for patients to come back and that is one reason for staying in the ‘safe zone’. The clot should not be too serious, as it is below the knee, and my temp has been normal for the last 24 hours. Hoping to get back to Apartment Sweet Apartment very soon!  We shall see!

No More Bad Hair Days (For a While, Anyway)

You can’t have any of those, when you don’t have any hair.

It started coming out gradually around the 10th day after chemo, which was last Tuesday.  It was mainly on the pillow. But being me, I had to keep testing. How many hairs would come out if I ran my fingers through it? How much would come out in the shower if I ran the shower head across my head?  It sounds a bit like I was trying to torture myself, but I think I just wanted verification that it was really going. Once I figured out that it was, I was ready to speed up the process and have my head shaved. There are two reasons for this…I was going to lose it, so let’s just get it over with, and secondly, it was becoming a huge mess! Hair was everywhere. Changing my pillow cases twice a day was not enough.

There was, however, one teeny little obstacle. Well, not so teeny. It was 6 feet, 2 inches tall. My husband, Howard, who loves me very much, and has done everything for me, was really struggling with this. He had been keeping up the hope that I might be one of the extremely rare patients who does not lose their hair after Melphalan, the chemo drug I was given, prior to the transplant. He asked me not to have my head shaved, to keep my hair as long as possible. I know he’s very sad about it. I was too. But I got over it. Cutting my hair short on August 3rd was hard for me, but it was a good transition. The hardest part was losing my pony tail, so I had already done my grieving,

When Howard and Trevor came to see me Saturday morning, my hair was still pretty thick.   One would never know I was losing it at the rate I was. I told him what I wanted to do, and he just wasn’t ready. But I had a plan.  While the boys went off to the cafe for lunch, I took a shower. A very long one. I sat there running the shower head through my hair, time after time, and losing gobs of hair each time. I just wanted to feel clean again! I watched the hair pile up, every so often moving it from the drain to let the water drain out. I laughed, thinking about how it was starting to look like a small animal.  It was reminiscent of the days when I trimmed my dogs, thinking how I had almost enough hair for another dog! I was getting the feeling that I could certainly create one now!  By the time they came back, I had emerged from the shower with a whole new look. The hair on the top of my head was so thin, my scalp was clearly visible. I had him take a look at the small animal encircling the drain.  And he got it. He really got it.

Umm, yeh, I may have lost my hair, but I got a new puppy!

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I think I sort of got his OK to have the nursing assistant to take care of business Sunday morning. In any case, I had it done and it feels great. No more mess, and I can start wearing my hats.

So, I had a healthy stream of visitors to follow, nine to be exact. Paula wanted to see my head right away and by that time, I was kind of tired of wearing a hat.  When she told me my head had a nice shape to it, I happily chatted with her and Mike sans any head covering. I think I can do this!

So, now I just had a debate. Do I post a pic here of me without my hair? Do I put a warning at the top of the page that disturbing images may follow? Will it be offensive? I came to a conclusion. If you spend any time with me, my hat might blow off when we are together. And oh my gosh, you might see my head!   Really, I’m the one who has to live with this, so I think you can deal with it!  And, you know what, it’ll grow back!  Here goes!

Have a great day!

 

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