Short and sweet

Today's post, as the title suggests, is short and sweet. Just to let all my friends know that I have recommenced with my applique!!!  Yaaaay!!!  I've been a little queasy today, but nothing I can't live with.  I'll just applique on.  Good bye.

Joan

Joan can have visitors and would enjoy seeing you! Please call first and read the following list of things you need to know about Stem Cell patient visiting.

1. Only one visitor at a time

2. If you have been sick recently, feel like you are coming down with something or have family at home that are sick, please don’t come and visit for a couple weeks.

3. School age kids shouldn’t visit.

4. Pets can’t visit.

5. When you get here take off your shoes and leave them on the porch. Bring some slippers or socks for inside.

6. Do your hands, fingers and wrists with hand sanitizer, we have lots.

7. No plants or flowers, fresh fruit or vegetables.

8. If you want to bring food, call first to see what is allowed.

8. No touching, you can pass things back and forth, just keep using the hand sanitizer.

 There you have it!!  Doc's new orders. I can have company so if you find yourself with a free hour (or so) bring some handwork and come for a visit. My brain has been feeling focused enough to knit since return from DHMC. I occasionally need to lay my head back and rest my eyes, but I don't feel the need to sleep during the day.

      I thank everyone for the many cards, the emails and blog responses I have received.  They go such a long way toward helping me feel connected to my friends during my confinement.  There were a few days of feeling really lonely and isolated. I'm not really one to wallow in self pity for very long and now that I'm knitting again can applique be far behind?  Occupation is so important and when I didn't have the focus for the handwork I love, I felt like I had nothing.  But today, I have my first lace scarf nearly done and later, I'm going to start organizing my sewing room so that I can sit and sew when the spirit moves me.

        This morning I woke up with no nausea and an appetite (a first since pre transplant) and actually had something like a "real" breakfast. I had a cup of coffee and  a little piece of a bagel with cream cheese and raspberry jam.

          Time to get on with the day.  I'll start with a nice hot shower, using my niece's homemade soap; four ingredients: lye, coconut oil, water and oil of Bergamot. Does it get any simpler than that? And take the rest of the day from there.

Love to you all, Joan

October 23,2016

Greetings and Salutations,
        Feeling much better today. Not ready for applique, but I did work on the Free Press crossword for an hour and still have energy left for a post. Had a nice hour's nap this morning and still feeling refreshed from it. Charlie has decided not to ask me if I want something to eat, he's just preparing food and putting it in front of me.  This seems to be working as I don't have to think about what I want to eat, which would be nothing if I have to think about it. Jello with fruit is a favorite and counts as a liquid.
         Hope you're all enjoying this beautiful blustery Sunday. Perfect sewing room weather and I'm with you in spirit.

Love to all, Joan

October 22, 2016

Hi Everyone,
    It's been a few days since I posted, at least I can do it myself, no dictation.
On Thursday last, we drove home from DHMC, setting off around 11:00 a.m. Kudos to the Dr's and staff for ensuring the early start.  Much appreciated. The only hiccup happened at the Kennebunk rest area. After going in to pee, I had just gotten settled into the car when I messed my pants, Grrrrrrrrr! So in I went again to clean up.  No other mishaps, but Charlie was a nervous wreck driving 395 through  Portland. I felt for him but there was nothing I could do except stay awake and keep an eye on traffic and offer words of encouragement. We arrived home about 5:15 p.m. Friend Deb arrived about 5:45 with chicken soup for our supper.
    Nice to sleep in our own bed again but I'm waking up at the times when the night nurses would come in for vitals and the phlebotomist would come in to draw blood (3:30 a.m.).  And then I'm napping during the day at the same times I did in the hospital. On the whole, sleep is elusive.  So is appetite.  I eat a little something when I feel hungry, mostly Deb's soup.  Baked goods are impossible to swallow, my mouth is so dry.  I have no saliva to help wash things down.
       Yesterday I saw Dr. Connelly at WCGH and received two bags of hydration while there. I go back on Monday for more hydration and blood work. On Wednesday we go back to DHMC for a follow up visit.  We will stay overnight and come back on Thursday.
      My energy level is extremely low and I have no interest in knitting or applique at all (yikes) and I'm running out of steam for this post so I think this is it.

Love to all, Joan

Last full day of Hospital Stay

Exciting news, I go home tomorrow (Thursday) Yes this is earlier than the expected three weeks, but they tell everyone three weeks, but the actual elapsed time is closer to 15-16 days if all goes well. I walked OUTSIDE today , eating solid food today and able to take all my pills. Not much else to report, lots of preparation going on to get ready.  Signing off for now.

Going, Going, Gone!

Tuesday

Its time to stop sending cards and letters to my Dartmouth Hitchcock address as I will probably be discharged on Thursday. As you can see from today's chart  my numbers are going up, I feel good, I actually ate something this morning, and took my pills by mouth.  Later I am going to get my head shaved, will post pictures later. That's all for now , will post again later today.

Monday, Monday

Good news is neutrophils (ANC) counts are  up today as is the white cell count (WBC) 

The bad news is that my body is working very hard to produce all these new cells and it makes me very tired. I only managed 5 laps today. Had a little scare last night with a fever, temp was 101,  Much blood was drawn , x-rays taken, but nothing conclusive was the cause. Temperatures today have been normal.  The nurses all say a fever is a common side effect, but they don't take any chances. I was  pooh poohing the dr when he wanted to do all the tests, but he reminded me that I was neutopenic and I had to admit he had a point.

We worked a little on the puzzle today, but I really don't have my usual energy for jigsaw puzzles.

We watched our usual Longmire episode this afternoon.

I thank everyone for their thoughts and prayers. Keep those cards and letters coming.

The daily progress chart

Sunday's Post

Joan is still pretty weak so I am taking dictation again today - Charlie

Feeling better today. Blood counts are all still down, but I feel like I am over a hump. I had a hankering for an orange soda and I phoned Charlie at 6:30 this morning to bring some. I have kept all that I drank down today.. I haven't had to fight down any pills since they are giving me all my meds by IV. Feel so much better doing it that way. Many many thanks to Dereka for putting up with me on my two worst days. Hopefully her next visit will find me greatly improved.

There is a family room here and Charlie and I working on a difficult jig saw puzzle. Dereka we need you.

Had a little black out spell today in the bathroom, After the nurse and dr checked me out they are giving me more fluids and don't seem too concerned. I had an IV installed in my other arm to handle the overload of fluid bags.

Have not resumed knitting but I am thinking about it.  Lots of birds still coming to the feeder. All in all, much better. Did get 8 laps in in spite of all the IVs I have to drag around.  Joan

Saturday's News

Not much different today, still in the low blood level stretch. Sick, tired, no energy. John and Dereka got us 20 lbs of birdseed and we have more birds than ever. Pine Grosbeaks and Tufted Titmice have joined in on the feed. We did work on a puzzle for a short while but ran out of steam. Nurses are so kind and caring. Got in 7 laps of walking today but it was an effort.

Oncology/ Hematology patient rooms are at the North Entrance. Joan is in the West Wing which is the Pentagon shaped tower at the far left of the photo.Her room is on the first floor.

I had to flap my arms really hard to get high enough for this photo.

Charlie

Todays Adventures

Joan has no energy to type today so I (Charlie) am again taking dictation. Dereka came first thing and spent the day with me while Charlie went to a local guitar shop to spend some time and a little money. (Thanks MJers. )

Feeling a little better today than yesterday, but still wiped out. Did manage 12 laps with Dereka and Charlie. Still not able to keep much down. Neutirphils and white cells are at zero as are my energy levels.

Birds and chipmunks eating about 3 lbs per day. wish I could.

Blood levels are nearing rock bottom . Dereka is here making sure I use proper grammar. I am at my lowest energy level yet. Only two short walks today and those were under duress. Energy level extremely low, having trouble keeping meds down. and having lots of naps. I did actually have a chocolate  milk shake last night, but not much today. I just don't have the energy to write more today if Charlie is typing  my dictation.

I am very grateful for all the cards, emails and posts to my blog. Thank you all so very much.

Our Daily Post

They have started posting blood counts today. The last 3 days show a dropping white cell , neutrophil, hemoglobin and plateletes. They will continue to drop for several days as will energy levels. As of today I haven't even got motivation to knit! Charlie is prodding me to do our walks. All this has hit right on time according to schedule. I did stay awake while we watched another episode of Longmire, which we do together every day.Still having problems keeping nausea at bay and things swallowed don't want to stay down. My spirits are still good since all these things are expected and on schedule. Charlie is on his way out to fill the bird feeder. This morning a volunteer named Ed came by, scrubbed up and played  his Ukelele for us and chatted. Very enjoyable.

View of our little buddy. He comes everyday and stuffs his cheeks full. Also have chickadees, finches, woodpecker, nuthatches, and a cardinal comes ocassionally . Today we had our first blue jay.

Walking is way ahead of schedule, unfortunately eating is a little below schedule. The weakest point in her blood levels should hit in a day or two and she will feel more tired. Right now Joan is feeling pretty good aside from the nausea. Here is a picture of her with her RN

Central Veinous line was removed today, everything they need to inject now can go into an I V. Dereka left this morning but did 8 laps around the course with me. The circular course is 132 feet for each lap. Nausea was actually a little worse today and still can't keep any food down. Had a nice visit from the hospital Chaplain. Charlie and I walked 10 laps around the course and hope to do more later today. We watched an episode of  Longmire on Netflix and then I had a nap.How I long to be outside and feel the wind in my hair while I still have it. Charlie keeps my bird feeder full and I have woodpeckers, sparrows, finches, nuthatches and chickadees along with my chipmunk. The nurses are all arguing about who will get the multicolored socks I am knitting. I can't sleep all night because nurses are in checking vitals or taking blood regularly. Thank you for all the cards and messages, we read them all. Joan

Joan is feeling better but still not eating much, they are trying a different antinausea drug today. She looks good and is taking a shower right now. Dereka and I are going into Lebanon today and do laundry. So far the chemo effects have been minimal compared to what they could be. Just as I was leaving for the hospital, Thursday morning I got a call from one of the Drs to discuss an "Event" that occurred during the actual transplant. Her blood pressure and heart rate dropped to where she was unconscious for 15 minutes. After much testing and consulting they still don't know what caused it. Out of hundreds of stem cell transplants, they had never seen it happen, and they were prepared for any number of known issues,. After 4 specialists interviewed, tested, reviewed independently, they all came to the same conclusion - Rather than chance a second planned stem cell injection later in the day as planned, they would stay with the one they had just done. Joan had received a little more than the minimum stem cells required in the first injection and they didn't feel a second one was necessary, given the unknown reaction. All tests came back fine and now three days later she feels fine. NO MORE surprises like that Please..  Charlie

Saturday - Feeling much better.still taking some antinausea meds that make me sleepy. I walked 16 laps around the walking area today with Dereka and Charlie. We knitted and talked .Had a nice visit. Not eating much yet, but that should pass. Dereka took Charlie on a wild ride through the countryside of Vermont and claimed she wasn't lost. Charlie brought some sunflower seeds and filled the empty feeder outside my window. Now we have lots of chickadees and finches. We also have a chipmunk that loves to visit now

Been here at Dartmouth Hitchcock Medical Center for 3 days now. Got here Wednesday October 5th and spent most of the day having tests and meeting some of the 35 members of my transplant team.At around 5;15 PM I received my big dose of chemo.

On Thursday got lots of anti nausea meds and didn't feel very well all day and they made me very sleepy. Lots of nurses and Drs. in and out all day. Charlie and I walked 1 lap around the patient area and later did 3 more laps.

On Friday they gave me the actual stem cells around 11 am . Didn't go as well as everyone had hoped. After 3 syringes full, my blood pressure dropped, heart rate slowed and I passed out for 15 minutes. After a bunch of tests they still are not sure why that happened but I am ok now. Dr, Meehan and his team have decided I got  enough stem cells and are not going to inject any more since they still don't know why I passed out.

It's 3:40 pm Friday, I am resting comfortably, Charlie is here with me everyday.