It is the night of February 19th @ 0120, so technically it is the 20th. Patrick and Rick spent the evening with me and I had a glass of wine-medicinal purposes only, of course. I sent Mom home in the late afternoon. She was falling asleep. That woman
is the hardest working woman we know. There is no way we can get through this without her. Not only is she a HUGE emotional support for us, but she also takes care of the everyday needs such as; laundry, cooking, cleaning, and dog walking. I am going to miss
her so much next week, but she needs a break just as Patrick does. I know how hard it is to be the support system in the hospital. It wears and tears on the mind. When Logan was in Children's Hospital on Seattle, we all took turns, or shared the time together,
taking care of Logan. I know how emotionally draining it is to sit around and watch. I am so grateful to have the same support as Logan.
My WBC doubled to 200 yesterday and I am thrilled. Normal is over 4k, but by gosh, it still doubled. I am going
to look at this as a positive thing. I believe we can pray it right up! Come on ANC's! Get to 500 so I can be released! I have a party or two to attend! Okay, so it's not like a raging kegger or anything, but five women in a house sounds amazing and I don't
want to miss out! My friend Laura agreed to be the videographer for our new dance video. That will take place either here in the hospital or out in the street in front of the house. I am beyond excited. It is the little things that keep me positive and happy.
Yesterday (Thursday) I had the pleasure of several visitors-two of which were unexpected bonuses. I had Mom, Patrick, and Rick, Laura, Reeva, and Jan! Laura brought an amazing Asian lunch buffet and I actually ate a big plateful and it tasted good! She
also brought me a new, very cute hat. Rick and Patrick left about the time Laura arrived. They had some secret plan to go shopping. It's not too often you see guys giddy about going shopping. Well Rick just had to buy me something cool. Patrick admitted they
had planned to go to Cabelas, but they stopped in a leather shop downtown first. There they found the perfect gifts; gorgeous furry slippers and an amazingly beautiful fur hat! I felt like royalty as I walked around the floor decked out in glorious fur. I
pranced around showing off as red blood cells were being infused.
Speaking of red blood cells, I feel so much better after the transfusion. I could tell I was pretty low. My walks are certianly not as energetic. There has been no dancing. Yesterday
was the furthest I have walked since the infection. I managed 2.71 miles. I try not to beat myself up for not walking four plus miles per day. I keep reminding myself that I am recovering from chemo, I am very anemic, and I was very ill just a week ago. But
I also don't want to use that as an excuse, so I will continue to push myself. It will be three miles today!
I know you want to hear more about the wine. To be honest, I had to choke it down. It didn't taste good. It wasn't the wine, it's my darn chemo
damaged taste buds. But it did the trick- I got sleepy. I fell asleep anout 9:45 and slept till 12:45. I have gotten three solid hours! I am pretty sure I can sleep more. My nurse Kristina tucked me in like a momma tucking in her little child. She assured
me she wouldn't bother me till 0550. If she walked in here right now and caught me blogging, I would probably be in trouble.
I was up till 0400 and then I dozed fitfully; thankful for those three hours. And the wine. I'm thankful for the wine. I saw
both Megan and Dr.Mulvey today. Dr.Mulvey mentioned how well I am doing. "How well???" I asked. I thought maybe he was going to tell me he would let me go home early. I then looked over at Megan, who quickly mentioned the whole 500 ANC requirement. I tried
to brush it off and pretend I wasn't trying to negotiate. After all I told them I wouldn't!
I spent the day walking, getting a platelet transfusion, playing a new game with Mom and Patrick that Aunt Connie sent, working on taxes, and nasically
just killing time. I said goodbye to our friend Rick and got a promise from him to come visit us at the Mayo Clinic when it's time for transplant.
Darci from the Mayo Clinic called me today to ask the staus of my remission. I told her we would be doing
another BMA when my counts come up. She then proceeded to tell me they have been looking for a match and there is no one that matches me. They are even saying my brother isn't a half match, so we can't mix his marrow and cord blood together which was the plan
if we couldn't find a match. So basically I have no idea what they are going to do with me. It sounded like they are waiting to see if I am in remission before they start looking at the cord blood registry. I am frustrated. I am scared. I am angry.
@0100- sleepless night again.... Brush it off, I told myself. It is out of your control. I'm not giving up, but I am going to stop worrying. I'm taking back control of what I can. I contacted www.bethematch.org to
ask them what it took to do a community bone marrow drive. I have organized several drives, but that was when the Blood Bank of Alaska was in charge of bone marrow drives. It's all different now. My concern is they are going to charge a fee for the community
drive. They allude to that on their website. It doesn't make sense though because anyone between the ages of 18-44 can get a free kit and get on the registry. Of course I have to wait to hear back till at least Monday. Everything is a "hurry up and wait" game.
In one of the drives I organized, a sweet young lady was registered. Caitlin was a very close friend of Logan's. She was devastated to lose her friend and wanted to do something in his memory. When she was just a young adult, she signed up to become a bone
marrow donor. It was just a short time before she matched someone! It was amazing. Caitlin bravely went through the whole process. Her marrow was removed via blood stream. It was infused into the patient and the patient survived. Because of Logan, Caitlin
was able to save a life. Oh how I would have given anything to have been someone's donor. My whole family signed up and all of us were disappointed we never matched anyone, I was an avid blood donor too and am so sad I will not be able to donate blood again.
I am used to giving, not taking. But now I am begging; someone please save my life.
2/21/15- 0230 and I am once again wide awake. I know lots of people with insomnia. They function just fine. I will be ok. I have hospital insomnia. It's curable by being
released. Maybe I can tell Megan and Dr.Mulevy that they can be guaranteed a 100% chance of curing me if they release me. Of the hospital insomnia anyway. No, I don't think they will buy it.
I walked over three miles today. I feel my strength returning.
I haven't danced in days, but it's coming. I can feel my legs twitching to move. Maybe I should start a Zumba club here! That would tone me back up! Hmmm. At the very least I need to organize a walking club. I mentioned it to a few people, but so far no response.
I can hold a whistle in my mouth under my mask and blow it to motivate people to walk faster.
I have had a new nurse in training the past few nights. I can tell Tonya is going to be a really good nurse. Tonight at midnight I pulled my nerf gun from
under the covers and shot at her. The darn dart went by and she didn't even notice! I loaded it up and shot again. She barely made a noise, picked up the dart, and handed it back to me. She said, "I have four teens. Nothing scares me". I forgot my darn duck
call at the house. I bet that would scare her! She just proved she is not easily rattled. She will do fine.
It is now 0800 so it seems natural to be awake. I just keep pretending I slept. Mind over matter- if I say it enough I will believe it.
Dr.Reaves, the on-call doctor, just came to see me. He instantly exclaimed, "you look so much better than last week!" I said, "I really must have been sick because I don't remember you at all." He said he came when Mom had spent the night with me. He ordered
me more red blood cells as I have dropped once again. He ordered my IV fluids be stopped during the day. For the first time in my life, my BP is high and the fluids are likely the culprit. Another concern is my arm is really hurting and the hematoma popped
up huge while getting BP checked. If it isn't one thing, it is another! I guess we can just use my leg to check my blood pressure. My poor veins.
Michele, my day nurse, just told me she is a leukemia survivor. She had ALL at the age of 8, and AML at
15. She had a bone marrow transplant. She is doing so well and is 11 years post transplant. I am encouraged.
11:30 p.m.- I managed a total of maybe 1.5 hours of napping this afternoon. I was thrilled that I was able to sleep during the day at all. That
isn't normal for me. My pattern has been up all night, up all day. I fell asleep fairly early tonight, but woke up at 11:00 wide awake. Hospital Insomnia sucks. I will call my Nurse, Charles, at midnight so he can hang my bag of antibiotics. Logan, my superb
CNA, will come in with him and do my vitals. They "tag-team" me every night, trying to help me be a successful sleeper. It's a nice thought, but no matter what the good intentions are, it doesn't seem to work.
Gary got here last night and leaves early
tomorrow afternoon. I feel like I didn't get enough time with him, I was so groggy all day and kept falling asleep. It's his voice! He has such a soothing voice...We did have a great conversation last night that really helped me understand Dr.Mulvey's point
of view about staying here until it's time to go to the Mayo Clinic. This hospital is awesome. I am on an oncology ward and the nurses are highly trained. They know me. They know what to look for, and they are aware of any subtle change in me that may indicate
a serious problem. Gary has a BMW and he takes it to the same place to get its oil changed. He said "I could get the oil changed anywhere, but I take it to the same place because they know my car and they can foresee a problem and take care of it before it
becomes worse." Something finally clicked with me. I have had great continuity of care. To interrupt that now, for a short season in my life, may end up being detrimental to my health. I hurt because I want to go home so badly. I miss my family and friends.
I miss my animals at home. I miss my job and co-workers. I truly love my Alaska life and I want it back. But patience is a virtue. First step is to get me back in remission and then Dr.Mulvey will let me go home for a visit. For now, that has to be enough.
One of my nurses, Andrew, came in this afternoon to visit. We ended up having a nerf gun fight. He told me he had planned to come in this afternoon and jump on my bed to try and scare me, but my current nurse, Michele, threatened his life if he woke me
up. He just wanted to pay me back for some tricks I played on him. I don't know what he is referring to; I am such a nice, compliant, and perfect patient. Before I hit the call light for my antibiotic, I need to come up with a plan to scare Charles and Logan....
2/22/15- I slept more last night then I have in days. I may have gotten four hours. Despite the fact it was broken sleep, I feel more energetic. Perhaps it is the private shower I now have! Yes, I got moved again. I may not have a big room, but I do have
a wardrobe to put my clothes and a beloved private shower that heats up better than the shared ones. I had been lamenting for days that I was unable to have a shower that was actually warm. It's the little things in a hospital that keep one from going insane.
Yesterday morning before my shower, I took out my insulin pump site because it was time to change it. I had it in my left hip area. I didn't realize it was bleeding. I jumped in the shower, washed my bald head and started drying off. I looked down at the
floor and saw all this pink colored substance. I didn't have my glasses on, so it took me a couple seconds to figure out what was going on. I looked at my hip and saw my precious blood squirting out like a geyser. I was already due for blood that day! Luckily
the shower was right next to the nurses station. I wrapped a towel around me, cracked the door, and said, "I need a bandaid!" One of my favorite nurses, Jess, came in with a bunch of gauze and a bandage. I thanked her for her ASSistance. Crisis averted.
All modesty has disappeared out the window since becoming sick. One person after another comes in my room each day to listen to my lungs, my heart, check my pulses, and ask me if I have had a bowel movement. That question is usually asked in front of all
my guests. I will often have a CNA on one side checking my vitals, while a nurse is on the other side messing with my IV. The CNA's will put the thermometer in my mouth while the BP cuff is on one arm and a finger on the other hand has the device to measure
my pulse and oxygen. That leaves the CNA to hold the thermometer in my mouth. It makes me feel like a newborn calf getting a bottle of milk. This morning I was still hooked up to Tad and I was rummaging through the wardrobe to find cute pajamas to wear today.
As I stood there stretching the tubing as far as it went, it suddenly dawned on me that I am like a chained dog. Or we could compare me to a prisoner who has been restrained due to threatening escape. It's not a good feeling. I just laugh it off though, otherwise
I will go insane. I have cabin fever like you wouldn't believe. It looks like a sunny day so perhaps a walk outside with Ringo would be the prescription this patient orders.
@2:30 p.m. I have gone for three walks, but none of them with my precious Ringo.
I have walked 3.35 miles so far today. My goal is now 4. Right now I am getting one of the lumens of my PICC cleaned out. It won't flush, so they are using a medical Draino product on it.
Patrick leaves at 6 tomorrow morning. I am so happy for
him to get a break, but boy, am I ever going to miss him! We don't have a return ticket for him yet. I am really hoping my counts come up soon, the next biopsy shows remission, and I can go home for my birthday on March 10th. If that is the case, he can just
stay home and wait for me.
I finished my day with 4.25 miles after getting to walk Ringo. Despite four walks today, I have the worst cabin fever. I am so tired of being in this small room. I really need out of the hospital. I don't want to have a gazillion
people checking on me. I need OUT!
2/23/15 @ 0430- I had a bit of a psychological breakdown last night. I have an idea of how a prisoner might feel. It is not a good feeling. Patrick talked me down though. He spent the night with me since he left this
morning. I was able to sleep off and on since about 8:00 last night. Even though the sleep was broke up with IV antibiotics, vital checks, etc., I feel like I got more sleep than I have had in days.
I got weighed at midnight last night. I am now
at my lowest weight which is not impressive. I am afraid to face Megan in a bit. The thing is, I have been eating a lot! My taste buds are cooperating and food tastes good again. I guess all the walking is just taking off the weight. It doesn't really make
sense because I exercise a whole lot more at home and don't overeat. I maintain a healthy weight there.
I have two visitors coming today. First, Debbie from church in AK will be here, and then Laura is coming. Tomorrow Dorothy will be here and the other
three will arrive Thursday. It's going to be a busy week! I won't have time for psychological breakdowns thankfully.
Happy birthday to my awesome brother whom I miss so much. I am glad we got to celebrate when he came to see me last month. I am missing
so much. Next year will be a party everyday after I can put all this behind me and live like there is no tomorrow.
4:30 p.m. I have been able to take lots of naps this afternoon. As soon as I am free from "grogginess " I will work on that 1.5
miles I have left to go. Today's goal is just 3.0 because I just don't have a lot of energy today. My hemoglobin dropped again, but not low enough for a transfusion. Sure does make me tired though.
Debbie came today and brought me all kind of new toys!
I rubbed my hands with glee. Watch out night nurses! I have nothing to do but lie here and think about how to scare you in the middle of the night. Laura was unable to make it because she hurt her already hurt shoulder! I am praying for relief of pain for
her. Tomorrow Dorothy is here. My dance card remains full. I love all the visitors.
Patrick made it home okay and he is babysitting Ollie. She is such a joy to be around and I am sure she is helping to occupy his thoughts away from worrying about
me. I haven't seen her for almost a month and I am having Ollie withdrawals.
Today's devotional from Jesus Calling" begins with " Be on-guard against the pit of self-pity." I will need to read this several times today as I struggle with
being stuck in this prison.
Dr. Mulvey came by tonight. I wrote a note to him on my board begging to get out. I was shot down. However; he said I have monocytes now which indicate my WBC should be going up. I am praying I am out of here by Thursday.
How wonderful that would be.
2/24/15 @0430- I actually slept quite a bit tonight and took a few naps during the day yesterday. I have been up since 0330 because Tad was beeping. I told Sam she was fired because that doesn't happen on Charles's shift.
I think she was getting even with me for scaring her at midnight with my shooting panda. We have called a truce and she fixed Tad, but here I sit unable to sleep. She drew my blood a half hour ago. I am anxiously awaiting the results. Will I be rewarded
for my extreme patience and have a huge jump in my WBC's? Okay, so maybe I don't have extreme patience, but I haven't hurt anyone yet and so far haven't offered a bribe. Tomorrow marks two weeks of being in here. If only I could have cake, we could have a
party. I like cake.
I fell back to sleep anout 0545. I woke up at 0615 when Sam came in with my antibiotic. At least I got quite a bit of sleep last night. I should be able to go another three miles today. My counts came back. No transfusions needed
today. My WBC stayed the same. Three days in a row that it has been at 300. Three days in a row it was at 200 so I'm sure it will go up tomorrow. Come on, marrow! Produce me some healthy cells so we can kill Leuk!
Sometimes I hate looking in the mirror.
It reminds me my life has been permanently changed. How I long to be home visiting with my family and friends, cleaning my house, volunteering to help others, and working. Seeing my bald head in the mirror saddens me. I can't stop thinking about how Logan
must have felt. He was just a young kid and he missed his friends too. He longed to be home and normal as well. If I hadn't relapsed, I would be almost done and home.
I went for my morning walk to cheer myself up. Dillon from patient transport hunted
me down and took me for a CT scan of my sinuses. I can't escape this place or its staff. I think they have a beacon buried in my PICC line so they can keep an eye on me......
2/25/15 @0500- I slept in today! I had a pretty decent night. I had a different
CNA and evidently she wasn't aware I have a "don't call me, I will call you" agreement with the nurses and CNA's. She woke me up shortly after I fell asleep. I will admit I wasn't super sweet to her. She quickly left and came back at midnight when I called
for my antibiotic. She did my vitals then. I don't try to be difficult, but I am desperate for sleep.
My CT scan turned out okay. It shows the chronic sinusitis problem I have, but nothing acute and no infection or fungal infection which is what they
were checking for. The ENT doctor came to my room and stuck a camera up my nose. It was not the most pleasant experience, but since this journey began I have had worse.
I only managed a little over 2.5 miles. My body told me that was enough and I needed
to rest. I am very good at listening to my body. Megan came to see me yesterday and although sympathetic about my mental state from being in here, she reiterated it is for protection of my health and I am staying till my counts rise.
late yesterday afternoon. It is so good to finally be with her. We caught up a bit before I started dozing off. Mom had brought in a delicious dinner and she must have put something in it to help me sleep. I kicked them out about 8:30 and I was ready for bed.
I look forward to tomorrow with my three other gal pals arrive. Despite the circumstances and being in the hospital, we are going to have fun. I sure will miss my mom though. She leaves tonight. She is more than ready for a break.