A friend comes & I'm discharged!!

To read earlier posts, look to the right - Jan 2012 starts it all...

Wednesday, May 2^nd

Jackie came on at 8pm (actually still Tues the 1^st), start of headache, and the question is; do we wait to see if it gets worse or do you nip it in the bud? We decided to stop it early and got the Zophran right away and the Norco for the headache. Went to sleep and 1:30 am they came in to draw blood and we had good flow out of the PICC line tonight, Yay! I do have to sit up though for this to happen for some reason, it just works better for me that way, so I just do it. And then I usually go to the bathroom and get weighed and vitals done. I finally lost a lot of the water weight, about 10 pounds and feel so much better, so much less bloated! I had an Ensure since I still do not want to eat a lot of food. Stayed awake for a little while, watched some of the weather channel with this guy who took pictures in Puerto Rico; down in the caves and up in the mountains. It’s such a beautiful island. I actually got engaged to my first husband there.

When Jackie came in about 5am I needed platelets, my numbers are at 7! Which is my favorite number and it is the number of completion, biblically. I shared a bit of my story with Jackie and got a bit teary eyed as to how blessed I have been through this whole process.

It’s a quiet, peaceful morning here; not much color in the sky yet. If not too colorful, I probably won’t take a picture. It’s supposed to be 85 degrees today! You never know what you’re going to get, weather-wise. Not that it matters to me, being inside all the while. It’s supposed to get cooler again over the week end.

Thursday, May 3^rd

Overnight, I was awake, asleep, awake, asleep. Nothing bad happened, but did have some nausea and headache medicine before I went to bed. Wake up for blood draw, drink an Ensure. Wake for vitals early.  Needed platelets again today (#3) and those wonderful Neupogen shots to get the blood cells multiplying!  I’m at day +7 and I will keep getting the Neupogen shots until the numbers start to rise – so, rise numbers, rise!! Beautiful sunshine this morning, I slept through the sunrise but I imagine all will enjoy the warm sunshine today.

I’m getting company today!!! Yay, my girlfriend Carol is coming up from Florida to stay with me for about a week! I’m so excited. She and I share the same birthday and we’ve been friends for about 15 years. It’ll be good to have her here, we laugh a lot! She owns her own business and can use the break as well! Works well for both of us. J She brought me CHOCOLATE!! And a few other little goodies, she is such a good friend! She knows I’m gluten free, and she brought some yummy GF treats.

This is a post SCT picture, we didn’t get to get a picture together when she was up in Chicago with me!

Before Carol got there, I took a shower (nice of me, huh?) and noticed a slight rash on my lower left abdomen. Hhhmmm, wonder what that’s about. I showed it to my nurse Carolyn, and she said we will keep an eye on it.

By the time they came back to give me my  evening meds, the rash had spread farther across my tummy and was under my bandage at my PICC line (which concerns me most, of course) and up and down my right arm and hand. I noted that my knuckles were very dry and rough the last few days but thought it was from washing my hands so often and using the sanitizing stuff.  I did have to get platelets again, which you get Benadryl and Tylenol prior to that, and the rash is still spreading not getting any better! Tomorrow the dermatology team will come in to take a look at it.

Friday, May 4^th  

Waiting for Team Burt to check on me and let me know how my numbers are doing!  Today is Day +8 and all is going well as expected. Dermatology came and examined my rash. No action taken at this point, we’ll just see how things go from here.

I had a bag of platelets and one unit of red blood cells as a boost, when you get them they usually raise your blood counts by one point and I was at .2 and it should put me over 1, which is why I may get to go home!

Saturday, May 5^th

1:15 am, my nurse tonight is Joe and he just came in to draw blood.  I didn’t need any meds before bed tonight, Yay! No nausea or pain meds which have been the norm for me before; but I do have a little discomfort from the injection sites of the Neupogen, just not enough to worry about.  I got a bed that is different than most of the others here that I have heard about in that mine doesn’t “blow up and release”. I think it’s been a blessing though because the bed makes a lot of noise when this occurs. I just have to roll back and forth, right side, left side and a little on my back. I’m not much of a back sleeper because I don’t seem to be able to breathe as easily in that position. If I put the top of the bed up a little bit, that works okay.

Everything is going just wonderfully, I’m glad to say.  I had my middle of the night usual ritual of toilet time, Ensure, a little TV watching and then back to sleep. Awake again at 5:30am with just a little back pain in the lumbar area from Neupogen. I might do a Norco, perhaps. And I might get discharged today! Yes, today is the day!! Blood count is up so I can leave!! The best part of the whole day was getting the PICC line removed! My regular nurse was leaving early, so another nurse I had met only once before for a short stint was the one to do the honors. This is a picture of how long that sucker was that was in my body. It went from my inner arm (just above my elbow joint) to the center of my chest.

This is Lauren, wonderful nurse who removed my PICC line:

Carol came in to this good news and we packed up my stuff and went to say good bye to some folks on the floor! I also had to wait for something before we could actually leave the floor and when we could we walked over to the Galter Pavillion to the Walgreens there to get my prescriptions, and they were closed! They close at 4:00pm on Saturdays and it was about 4:10pm. It took all I had to make that trek, which is only about 2 blocks but that was all I could do. We took a taxi back to the apartment.  Got hold of Amy and they transferred the prescription to the other Walgreens. I appreciate Walgreens for that perk, you can order from anywhere and they can get it for you from any other Walgreens, even in another state! Those of you following me for a SCT, this is a good note for you to get settled in a Walgreens near you if possible so you can do the same.  As I rested, Carol went to pick up my prescription (she only needed to know my home address) then we order Thai food from Grubhub.com. It tasted so good, because we got home about 5:00pm and until we decided and they delivered it was about 6:30pm and we were HUNGRY!! I had to take another pain pill for my achy back and about 7:30pm I crawled back in bed, talked to Eddie a little bit and then just crashed. It felt so good to lie down on a real bed (queen) and spread out if I wanted to! To be able to roll over without having to lift my body and turn side to side is great! Slept until 11:15 when I woke to use the bathroom and I took my Clonazepam (like Xanax) and slept until 4:30am. Woke for a little while again and went to the kitchen to set up the coffeepot for when Carol woke up and went back to bed and slept again until about 7:30am!

Sunday, May 6^th

I got up for breakfast, spent a little time on the computer; probably facebook and my e mail. I actually managed to stay up until after lunch, and then I took a 2 hour nap. At about 5:00pm I was able to remove my bandage off the PICC line incision and take a shower! Can l tell you how glorious that felt? I wasn’t tethered to an I.V. pole nor did l have to wrap my arm in saran wrap to keep the PICC line dry. The rash is still pretty prominent and tomorrow I go for blood work, so I will make sure they know it is still present. Other than that, I am feeling pretty good. I’m going to get dressed and maybe take a walk down the halls in this hotel!

Monday, May 7^th

We went to Galter Pavillion this morning for my blood work; I don’t know when the results will be back from that. Took a cab today to and from everywhere, feeling pretty tired. We went to the Castle and the Elephant for lunch then went back to the apartment and I took a nap. When I woke up I was a bit hungry since I only had soup at lunch so I ate some leftover tuna and crackers. Ate dinner and went to bed early. Carol is still here and she is reading a lot and just relaxing herself. She owns her own business and this has been a good break for her (so she says, she’s a good friend to come babysit me!).

Tuesday, May 8^th

I still got the rash, using hydrocortisone ointment on it. They told me to stop taking the Diflucan, because it could be what is causing the rash. It has spread all across my torso and arms and it itchy as all get-out! Ointment is not really helping, neither is the prescribed anti-itch medicine! L They are going to have me up my prednisone to 60 mg for 3 days, 40 mg for 3 days, then 20 mg for 3 days, 10 mg for 1 day and back to my normal 7.5 mg to start the decreasing regime I am on. If this is the only bad thing that has come of this whole transplant process, it is so worth it. Other than that, I’m just still tired (of course) and weak. If I’d do a little something, I’d get so tired. Carol went out grocery shopping for me this morning and made a grape salad which looks absolutely scrumptious. We had lunch from downstairs today, Carol had a huge Greek salad and I had chicken salad and French fries and we both have leftovers. 

Wednesday, May 9^th

Carol left today, we had such a nice visit and I am so thankful that she was here for me. It seems like whenever I needed someone when something was going to go wrong or when I needed extra help, God always had someone here for me at that time! Ruth Ann was here when I had that dizzy episode, Eddie was here his first time when I got the fever and needed to get to the ER, and Carol when I needed help with getting me and all my stuff out of the hospital and back to the apartment. Of course, God himself has been with me through it all in a way no other could be! When I was here alone, I seemed to get along just fine and nothing happened that required anyone else but Him and me!

time after SCT

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Sat early a.m. 28^th

Friday I had chemo, did pretty well thru it but around 7pm I got dizzy again. Went to bed around 10pm and was still dizzy but when I woke at 1:30am I wasn’t dizzy anymore. I had the most pleasant experience at this point.  As I lay in my bed I felt like I was being cradled in the arms of my Heavenly Father. If you can picture a set of hands cupped together with me lying in the middle; that is exactly where I felt I was. It was the most peaceful feeling I think I have ever known. I spent time with my Father, had a little snack (Ensure again and a rice cake), was able to have a private time in the bathroom, and fell peacefully to sleep. Dr. Burt should be in to see me in the morning, hopefully he will be pleased and hopefully my numbers are going in the right direction. I don’t know what are in the plans for tomorrow with the meds; maybe just some antibiotics. So far; so good. Good night. Thank you Lord, you’ve been such a blessing.

If someone wants to know the plain truth of why I feel the way I do about my belief, it’s so simple. Knowing in your heart, in your very being, that there is a God that made the heavens and earth; and that He sent His son to die on a cross as a sacrifice, for you, for me, for anyone to be forgiven of our sins and share a place in heaven with Him. If you believe that, it is so uncomplicated and it gives you a peace that goes beyond all understanding. Then you know you have a place for eternity and are in a right relationship with the Father. It is such a comfort, so overwhelmingly peaceful. 

2:45am

Woke up with hunger pangs, as I didn’t eat a lot today (yesterday really) so I have some Ensure on the table and asked for a cup of ice to help. Feel better in the tummy and helped my headache too which could be because I was hungry or because I wear my eye mask around my head all night! Nothing like having something wrapped around your head all night, but if you don’t it’s hard to sleep. Now, little bendy straws present a problem with drinking the Ensure; when you drink from them, they want to drip little brown spots on your nice, clean gown and it looks like you’re lactating chocolate milk! Ha ha ha. Well, you know, we are in a women’s hospital with lots of babies, so…guys, I don’t know about you but we women have a good excuse!

Sat, April 28th 6am

The wind is blowing like crazy, not sure if it’s raining or sleeting or snowing! But, it is definitely windy. I haven’t turned on the tv or asked anyone yet, but I will. No sunrise this morning, it’s covered by clouds, but there is definitely one in my heart. 

  

Got woke up about 4am with news that my hemocrat count was at 7.7 so I had to have 2 units of blood and some potassium, the potassium part isn’t unusual for me. Got that right away, but it takes a while for the blood to come up from pharmacy. Once that got running, I started to feel a bit better, I was definitely feeling like a weak little puppy there for a while.

Had a most beautiful sunrise this morning! After the aide helped me to the bathroom, I could see the sun through the screen of my window just getting prettier and prettier, I managed to get up and go over to lift up the screen (blinds of a sort) and I took about 10 pictures. Oh, the Glory of the Lord in the morning, it was just beautiful and really blessed me.

 Day +2 today, I am neutropenic now, counts are at .6 that means the numbers are going where they are supposed to.  And I feel good, I really am feeling good; I know it’s all in the good Lord’s hands.

My nurse, Alex, just brought in my blood results and I am officially neutropenic; “TLTC” Too Low To Count. That means being extra cautious, washing hands, keeping clean, vitals every 4 hours instead of every 8 hrs. If I walk the halls, I have to wear gown, gloves and a mask. And visitors must be extra careful too. This is just as expected and numbers are where they should be at this point! I’m smiling!!

Sunday, April 29^th

Dr Burt just came in, we talked about how I was feeling and that I will be getting another unit of blood today. We were also talking about the sunrise and he said something I found very special and want to share it with you. He was telling me how he loves to watch the sunrise over the lake whenever he can; he says it’s like “watching a moving mural from God”. 

Monday, April 30^th

Last day of the month, feel really good today! Overnight, there was a minor issue that God took care of as only He can! My nurse Alex was going to tell the PCT Carmellita to let me sleep until blood draw time of 3am instead of waking me at the 4 hour time of 1:30am for vitals, but she forgot (that was the God part). So, while Carmellita was taking my vitals, Alex came in to do the blood draw at this earlier time and it was good thing because my lines were clogged and she had to order certain “cleaning out” fluid which has to sit in the lines for an hour to break down the clog. If she had come in at the 3am time instead of the earlier time, she would not have gotten the blood draw in time for the early morning reading that has to be down to the lab by a certain time! Thank you Lord!!

While I was awake I had an Ensure and a couple of rice cakes because I was hungry! I guess having something to eat is a good thing; it will help me get stronger, yeah! I was also able to sit in the bathroom and take care of that business in private. I sure hope when this is all over and I’m out of here I don’t wake up at 3am to go to the bathroom! But, for now, let it come when it may.

I was able to go back to sleep and I slept until 5:45am. It was cloudy this morning so I wasn’t able to get a sunrise picture today but that’s okay, you can’t have a beautiful sunrise every morning but it’s still a beautiful day – This is the day the Lord has made, and I shall rejoice and be glad in it! 

Tuesday, May 1^st

Starting about 7pm last night, boy did I get a headache. It started just slightly but by 8pm it was much worse, so I went to sleep. Woke up about 9 and it was a little more; probably put it at a 7 out of 10 pain wise, so I called in the nurse and got some Zophran for my tummy, because that was a little iffy too. She called the doctor on call and he just wanted to give me some Tylenol, well I wanted to laugh; Tylenol doesn’t do anything for me, so I got some Norco and I slept pretty good, waking occasionally with the headache at about a level 4. All I have to say to those who do this behind me, is don't try to be superman; if it starts to hurt or you get nausea, ask for medicine! It it's bothering you, they have a pill for that! haha! Actually, it's much easier on you if you can stop the pain/nausea before it gets too bad than wait and have to fix it later and it takes more meds to help.

When I woke this morning about 4:30am to visit the bathroom, I just felt lighter like I had lost a lot of my body fluids. My feet and toes felt better and my stomach felt smaller too. I was retaining a lot of fluids and my feet and lower legs were really swollen. My poor little toes looked like sausage links. I don’t know if it helped, but I lay upside down on the bed with the head of the bed elevated so that my feet were elevated too! My mom and mother-in-law used to do this when they felt bloated in the legs/feet and I thought it might be worth a try! It seems to have worked pretty well!

New Birthday and beyond....

Thursday, April 26^th

STEMMIES GOING IN TODAY!! What an exciting day! It is a bit like Thanksgiving dinner, you work hard and long to get this most beautiful feast together, hours are spent prepping, baking pies, and peeling vegetables, cutting, chopping, slicing, and carving. You set a pretty table with your best china and your best silverware. You use the crystal glasses and put all the food in your special serving bowls with the really big spoons. The centerpiece of the table has to be perfect and appropriate for the event. Everyone’s been invited and you gather around the table for a good prayer of thanks, sit down to eat and.... it’s over in 20 minutes!

The first to come in of the transplant team is the man with my frozen batch of stem cells. He is quiet and professional. I tell him I have heard about him from others, that he is “the quiet one” and I am rewarded with a smile. He gets busy thawing out my cells (runs them under the hot water in the sink) and then the rest of the “team” comes in. My nurse to do the honors today is Eric. He starts setting up the equipment on the IV pole for the infusion to begin. Dr. Burt, Amy and Dr. Hahn join the crowd and the process begins! Amy stayed with me the whole time, but the others ran in and out after the cells finished running in to me; only took about 25 minutes. They have to monitor me pretty closely, taking vitals every 15 minutes. I did very well through it all and had no issues at all.

                                                                            Eric

                                 Dr. Han, Dr. Burt, Amy (RN) & me after my cells were administered

 It was a very emotional day, in a good way. I got good mail, a book about sisters from my sister that she added a bunch of pictures of the two of us and our Mom and her sisters to the pages that just had me bawling my eyes out. I also got a great gift from my friend Shelley from Arizona that was befitting of the day. She sent me 3 stretchy headbands made of beads to dress up my head, they are so cute. With this present, she sent a card that touched my heart. It was a picture of a beautiful white long-haired cat with a tall crystal crown on its head. It represents to me being a princess and daughter of the King! 

I was hungry after the transplant; even though I thought I would need a nap, I didn’t. I laid there for a while trying to fall asleep but that didn’t happen, so I said I’ll have some turkey and cheese on 1 leaf of lettuce (chuckle) and some chocolate ice cream and ginger ale for burps. And, by the way, the chemo gas is pew…strong and not just air; so you need to protect your panties folks! They do have underwear liners that are of good size (after all it is a Women’s Hospital for having babies) that will take care of it.  Gonna go for a walk now…later.

Chemo nightmares!! Not a pleasant experience. I was told about the nightmares ahead of time but didn’t really think about them before they happened. The good part about them was I played the “hero” in my dreams! I had to save the world from a fire that came up from the pit of the earth. I actually “dug” myself into the middle of the fire to bring up dry earth to put it out. Yeah, me! In the next one, I saved another patient who checked himself out of the hospital, pulled out his picc line and was driving away from the hospital. He was stopped by a cop and I came along just in time to keep him from either being arrested or bleeding out! I got him back into the ER just in the nick of time!  There was a 3^rd dream, but I don’t remember that one, but I’m sure I saved more lives! I’m so healthy with all my new stem cells in me that I can take on the world!! However, when I woke also had the shakes and diarrhea and a sore bottom to go along with it. Saving the world is hard work!

                                            My future is so bright, I gotta wear shades!! 

Friday, April 27^th

I woke up this morning with a tummy ache, nothing major but just not feeling too good. Ate my breakfast, vanilla yogurt and a not much else. Had to take the usual bunch of pills (about 6 of them) and uh oh, here it comes! Caught the first little bit in my hands and fortunately my nurse, Stephanie, was in the room! She ran to the bathroom to get the pretty pink tub for me to upchuck in! There went all my pills in round two! She ran back and forth with about 3 different tubs for me because when you upchuck yogurt, the smell is enough to make you upchuck more! She brought me a wet washcloth too to clean up several times between vomiting, bless her heart. She hustled so quick back and forth between me and the bathroom to throw out the vomit and wash out the tub and get me a clean one for the next round, it was amazing! She would have won a marathon! She did in my book!! I haven’t thrown up for many years, since my girlfriend Tanya and I had food poisoning. I don’t have to remind myself it isn’t pleasant.

                                                                        Stephanie

                                                        My girlfriend Tanya

After that I was relieved to not have to take my pills again until a later time and I got some Zophran thru my picc line and it was my friend from then on whenever I started to feel nauseous, I would get some. Today I was introduced, by recommendation of my nurse, to Ensure! What a good thing this was, I loved it and over lots of ice it is just delicious! Gives you a good amount of protein and helps you have more energy since you don’t feel much like eating at this point. It almost tastes like a treat; like pudding in liquid form. Delicious! 

 more later....