Well I promised a diary of my mini-allo transplant, so here I am on day -7. Transplant date is next Wednesday evening. I spent the week of December 15 in Omaha at Lied Transplant Center going through multiple tests - CT, PET, Muga, bone marrow biopsy, dental exam, EKG, Chest X-rays, Sinus X-rays, lung function tests, bloodwork, meetings with social workers, financial reps, research study nurses, post-BMT care class and GVH class. Wow, is that place organized! They presented me with a 3 ring binder of information including detailed itineraries for each day and monthly calendars for the next two months.
They then let me go home for Christmas and I was back on December 30 for more bloodwork and a PSCT info meeting and to fill a small cavity so that it wouldn't cause future trouble. January 1 I did my pre-transplant chemo which is a daily dose of Pentostatin for three days. I didn't have much queasiness from the chemo, more from the Reglan that they gave me for the nausea!! Once that left my system I felt fine.
They then let me go home for the two weeks until my transplant. I have weekly bloodwork here in Fargo and fax the results to them. This is also a clinical trial so I have trial labs that have to be fed exed to them.
I leave for Omaha (a six hour drive) on Monday, January 30. When I arrive, I have an exam with the physician's assistant. They will then check me into "cooperative care" . U of NE has a brand new transplant center, an incredible facility where you are either in-patient or in "cooperative care" where you basically stay in a two room hotel suite and bring your own 24 hour caretaker. Barring any complications my transplant will take place in cooperative care. Much nicer alternative to the hospital. There is a clinic open 24/7 on the third floor of the transplant center and the hospital is connected if that becomes necessary.
On Tuesday, day -1 I will receive 200 rads of total body irradiation (TBI) and they will start IV cyclosporin and cell cept to suppress my T-cells for tranplant. Tuesday, I will receive the new stem cells from my male, 24 year old life saver. I will remain in cooperative care from 5-18 days and then be released to stay in Omaha until day +70 which is April 2. (not that I'm counting)
My husband will be with me for the first two weeks and then I will have rotating caretakers when he goes home to be with our children who are 13, 9 and 7. Hopefully the weather will cooperate and I'll see them every other weekend.
Well sorry for the length of this. Hopefully the process will be so boring that I won't have much to write.
Well, tonight is the big night. I get stem cells from a 10/10 match 27 year old male donor. I figure that with some male blood in my veins I will finally understand my husband and two sons (not to mention our two male dogs).
Things have been moving right along since we got here Monday afternoon. I had a physical and history and was checked into cooperative care yesterday (Tuesday). I got my first dose if IV cyclosporine at 8AM and a baseline chest x-ray after that. Then two hours of hydration an IV bag of Zofran and off to the one dose of full body radiation. Boy was that a torture chamber type of experience...very strange. Then lots of rest until the 2nd dose of cyclosporin at 8-10pm. Felt ok other than a splitting headache from the Zofran infusion. Was given darvon and oxycontin and nothing touched it. Thankfully it was gone when I woke up this morning. Slightly nauseated this morning, especially if I move around too much. I feel much better lying down. Hopefully that will go away once they get my cyclosporin levels regulated and the radiation out of my system. I had more cyclosporin at 8am this morning and now I am free until 6:00 tonight when I start the premeds for the transplant. Then the transplant at about 8pm and then two hours of hydration and then two hours of cyclosporin. So I will be in the treatment room half the night.
I would appreciate all prayers during the transplant process at 8pm CST tonight. I'm a little nervous, but know that this is where God wants me to be.
Lied Transplant Center, Room 4709 987640 Nebraska Medical Center Omaha NE 68198-7640
When I started this journal I fully intended to write everyday, considering this procedure to be a piece of cake after my auto PSCT five years ago. But I'm finding that to not necessarily be true!
Day -1 I was given IV cyclosporin every twelve hours in the infusion room which is one floor down from my suite. Then I was given IV fluids and 32mg IV Zofran in anticipation of radiation sickness. I then had 200 rad TBI. By then I was tired, had a major headach and slept through the rest of the afternoon and the second cycle of cyclosporin which was given from 8-10pm. Day 0 (TRANSPLANT DAY!) was another round of cyclosporin in the morning. At 6pm I returned to the infusion room for more IV hydration. About 9pm I got premeds - Ativan/Demorol/Benedryl and so by the time that they started the transplant I was pretty much out for the night!! That two bags took about an hour and then I got two more hours of IV hydration and then my second dose if IV cyclosporin. So I finally left the infusion center at 4:15 am and returned to my room for 2 1/2 hours, which is when I was due to the infusion center for draws and more cyclsporin. It did make me vomit once that day, probably because of all the different meds I received at once during the transplant. However after that one time I was just fine and still am. Thankfully I only had three days of IV Cyclosporin and today I am on oral meds which seem to be easier on my system. Right now my meds are:
Oral Bactrim (2x/week)
Also Darvon and Oxycontin for the headache, neither of which touched it, it just went away on it's own. Zofran as needed.
Right now it's going well. I nap a lot and read a lot. My online hookup on my laptop isn't working but there are four computers in the resource room here so I can use them for communication purpose.
Big surprise this morning was that Debbie and I actually ran into each other in the elevator! She starts high dose BEAM tomorrow and we will both be on the same floor then. Pray for her as the side effect of beam can be harsh.
Same time tomorrow, hopefully it will be short and boring - I'm starting to appreciate boring!!
Well so far there hasn't been much to report. Debbie and I shared a treatment room the other day, it is great to have someone to talk to who is going through the same experiences. Actually her "suite" is across the hall and 3-4 doors down from mine. As for me, I'm just watching and waiting and adjusting to the meds. I usually have one bout of nausea a day with the cyclosporin which is controlled with Zofran and Ativan. I did get two units of blood yesterday and will get some IV magnesium today. My ANC is under 400 so they have added a new IV antibiotic which I can administer myself in my suite. Mouth sores may be kicking up so I will be getting some lidocaine mouthwash sometime today. This is so much nicer than being in a hospital room, the only downfall is that I have to be in the clinic downstairs by 7:30 every morning - I'd rather sleep part of the day away, time goes a little slowly when you get up so early, especially on the weekend. What about those Bucaneers??? My husband did our traditional superbowl watching - complete with snacks!! So far I am able to eat just about anything, just smaller amounts. Hopefully the mouthsores will resolve quickly and the nausea too. Well, I'm off to the clinic for some IV magnesium.
Teri Morse mini-allo 1/22/03 - University of Nebraska Medical Center
Nothing new for me, I feel exceptionally great this morning (of course it's only 8am) I saw Debbie in the infusion center and she's starting to feel pretty rough from the chemo...please keep her in your prayers, the rough part is just beginning for her.
Ok, it's not fair to tease us about our mistakes in days...we're in a little self-contained cocoon here, I'm not even always sure what day it is, except on the weekends when there is nothing to watch on TV especially now that football is over. My routine is same old, same old...3-4 hours in the clinic each morning, mostly waiting for the dr to make his rounds. I did get a blood transfusion a few days ago and so I was there for 8 hours!! Other than that I'm doing really well, keeping the mouth sores away by swishing and swallowing aloe vera juice and 4x day oral care. I take lots of meds but have been able to keep the nausea at bay for the most part with Ativan/Zofran. My ANC is pretty non-existent right now so in addition to twice weekly Bactrim I get Cefepime twice daily. Thankfully we can administer that by iv in our suite. My husband thinks that he's ready for an LPN degree since he takes all the vitals and records them and takes care of the iv fluids and antibiotics. In some ways I can't believe that a week and a half has gone so quickly but then again 8 1/2 more weeks seems like forever!
Teri Morse Moorhead, MN mini allo January 22, 2003
Nice thought going home early, but the GVH issues is as problematic with a mini as it is with a full allo, you just don't have all of the chemo illness to go with the transplant. Actually for a full allo they require you to stay in Omaha for at least 100 days, while I only stay 70 days. (only??) Oh well, I am blessed so far with no mouth sores, eating tons and feeling great. I even did the laundry the other day. The hard part is that it is going to be 50 degrees on Saturday here and I'd love to go for a drive but am not allowed so I guess I'll have to walk in the "healing garden" that they have set up here. I am not going to be released from cooperative care until I have an ANC of 500. Right now it's under 200 for sure and maybe even under 100. Thanks everyone for your encouragement and prayers, they're working...Today is Debbies transplant day - I walked by her room to see how she was doing and she was sleeping her new birthday away!! My kids are coming down this weekend, can't wait to see them!!
Well, it really is Day +11 today (I double checked!) and nothing new to report. My counts are starting to climb in fact I have normal platelets for the first time in months. My ANC is 22 - nothing to write home about. I'm changing caregivers, Todd is going home and my mom will be here for a week. I got to have my kids come down which has been wonderful. Now we're not sure if the roads are going to be too icy for them to be able to get from Omaha to Fargo today...oh well, I'd love to have them here for another day!! I'm feeling great, the aloe vera juice has kept the mouth sores away, God has been faithful as always!
Sorry I haven't been better about writing every day but thankfully there just isn't enough to write about. I'm feeling really good, minimal nausea easily controlled. I am still in cooperative care waiting for my counts to come in. My platelets, which were in the 40's to start are now in the 400's. My WBC has jumped from 1's to 3.9. However we're waiting on the bands and segs which are just not cooperating, two days ago I had a total of 7, now I have 1! The doctors don't seem concerned, they say everyone is different, and it will happen all at once. My days consist of a draw at 7:30am and then a three hour wait in the infusion room for the doctors, who come in say everything is fine and walk out again. By 11:00am I'm usually back in my suite and lately I've had IV fluids with magnesium because the Cellcept that I'm on drains the magnesium from my body. I take three magnesium pills three times a day and one IV push and my levels are still low the next morning! Other than that I watch a lot of TV, read and have even been on the stationery bike. Mail is the big excitement of the day here!! I am incredibly thankful for boring, that's what we want. I feel like I could be home doing my normal stuff, it's hard to comprehend that I'll be here until April!!
Well, I have an ANC of 600 today!!! Up from 250 yesterday, so I guess that constitutes a trend! I will most likely be released from coop floor tomorrow and move up to my own room where I can stay by myself if I choose to!!
Skip, Thanks for the email, it was great to meet you too, it's been so nice to be able to talk to Debbie and all of her sisters, gives me company down in the long mornings in the clinic. Todd is home with the kids again - I think he's wishing he was here again, lots easier than chasing around the 8 , 9 and 13 year olds! They'll be down this weekend, can't wait!
Well, I was officially released from cooperative care yesterday!! Basically I am outpatient now although I will be staying in the same building, just in Room #6715 not 4709 anymore. Same exact room, same exact layout, colors, just no emergency nurse button on the phone, although I do still have an emergency pull cord next to my bed.
I am free...to go outside, to go to a movie, to go to a museum, anywhere there are not hoards of people...I can even go for a ride in a car, haven't been in one since January 20. If I get out a little now I might even save some of the brain cells that have been deteriorating with bad TV and my electronic Yatzee game.
Thanks for the cards and prayers and emails, they are lifesavers!
Well, today is three weeks since transplant and for the very first time I have had no medical appointments of any kind! I needed no blood draws, iv's or doctor appointments!! I could sleep in and did! Tomorrow I have an 8am blood draw and a 4pm doctor check up and that's it until next Tuesday, God willing! That just seems so strange. You get really used to all of the attention and babying and all of the sudden you're on your own. My ANC yesterday was in the 700's, it's been above 500 since Sunday, so hopefully it'll just keep on going.
Thank you all so much for all of the cards and emails, I'd thank you all separately, but I know I'd forget someone and would feel terrible. Your support is so wonderful and all the cards on my wall brighten some very long days (but I'm not complaining - I love boring!:)
God bless you all in this fight that we share,
What a weekend...we got 9 inches of snow here Friday night in Omaha and I wasn't even sure that I would see my family. They ended up making here about 1:30 the next day and who did we run into but Debbie and her family in the elevator!! We rented a local hotel cheap through priceline and Todd brought my three kids and the yorkie! We ate out, celebrated my son's 8th birthday, went shopping for pants for my oldest son and just enjoyed being outside. It felt so normal that I was in tears all day thinking about them leaving me here! So they left the birthday boy with me since my Mom will be coming tomorrow or the next day and he will go back with her. He's been missing me the most - our habit of snuggling each night before he goes to sleep - I'm not sure who's been missing it the most! He is my cheerful, funny, loving, compassionate "tough" guy - I have missed him so much - he doesn't have as much of a life of his own as the others do and is such good company. The others all left an hour ago and have five hours to go, so I'm praying that their trip will go quickly and easily. I miss them all already!
I went into the bathroom for 10 seconds and when I came out my 8 year told me that a lady deb had told him to tell me that she was going home! She was so nervous before her appointment, I am so happy for her!! Now she can concentrate on getting stronger and going back to a normal life, hopefully for many years to come!!
As for me, I think that I'm experiencing some mild GVH in the gut but now treatment yet. I had a bone marrow biopsy today to determine chimerism - how much of a percentage of my marrow is his and how much is mine. Also to determine if the marrow is still clear of lymphoma. I'm having some slight problems with heart racing, especially at night when it tends to give me a panic attack when I don't feel like I can get a good breath. Doesn't bother me too much during the day most of the time. It's hard to know what's normal and what's not. So far my counts are good and doctors are encouraged. It will take a couple of weeks for the tests to come back. Next week I will reach the halfway point of my stay...it' s still blessedly boring but getting a bit slow too, especially with Debbie and her sisters gone...
Hi all, Sorry, I'm not too good about daily updates but life here isn't very different, I have blood draws and clinic appts every Tues and Thurs and other than that I'm on my own, which since I don't have a car here consists of sitting around my room if I don't have a visitor. I did have my 8 year old here with me all week. What a trooper! He was helpful, remembered all his hand washing and reminded me to put on a mask when the cleaning lady vacuumed our room! He went home with my Mom today and I will miss his cheerful presence, but it was time for him to go back to his friends and get outside!!
For excitement last night I decided to run a little fever, a first since I've been here. Since it only got to 99.6 I just kept an eye on it and went to bed. Gone when I woke up but woke up with watery stools and no appetite. Fever returned about 5 and by 8pm it was 100.1 so I headed down to the clinic for some cultures. They said the bloodwork looked fine and my cultures won't be back and so are doing nothing tonight but I will have to see my Dr. tomorrow if I'm still feverish. I just checked and it seems to be hanging in at 100, at least it hasn't risen for a couple of hours. Could be a GVH thing starting too I guess. Something is up because I have felt extremely emotional and weepy and that is definitely not me. I'm starting to wonder if I have post traumatic stress or something. Each Sunday when my family leaves is unbearable but it happens during the week too. Very unnerving to have tears for no good reason on the middle of the elevator!! Thankfully other than the fever and the tears I feel ok!! I do miss seeing Deb and her sisters around though, but sure am glad she is home. You should rest Deb!! I couldn't even think straight when I left the hospital after my auto 5 years ago and I spent three weeks in a hotel before I went home!! You're just a baby immune system yet, let them baby you...enjoy it while you can...
Thanks so much for the email support everyone, it really does help get me through the days here which go much more slowly now that I'm outpatient. Bonnie, you were right on with your evaluation of my moodiness but the missing ingredient is...large doses of cyclosporin each AM and PM. I have alternated between tears and raging at my husband on the phone. I call to sincerely apologize and end up ranting at him in tears. All of the sudden it hit me last night as I prayed for forgiveness and hated myself...where have I seen/felt this behavior before??? When I had the chemo Promace Cytobom 6 years ago it involved massive doses of Prednisone. I finally had to ask my doctor to wean me off of it because it caused such awful mood swings that I figured that even if it saved my life I wouldn't have any family to spend it with!! So I talked to my coordinator today and sure enough, cyclosporin known to cause major mood swings. Great, and I could be on this for a year, six months for sure. AND...if this gut stuff is the beginning of GvH I will get Prednisone on top of it. My husband is going to be so thrilled...good thing apartments are cheap in Fargo - my yorkie and retriever and I might need one for awhile. Either that or my 13 year old may have to go live there!! :) Adolescence and cyclosporin, I can tell already that is not going to be a good combination.
Fever is gone today but diarrhea is worse so I was given a culture container for "homework". Transplant coordinator says not to worry so I guess I won't (if only it were that easy).
Thanks again for your support, it is much appreciated!
Well I now officially have been here more days than I have left. Barring complications or GvH rearing it's head I am supposed to be out of here on Day +70.
I'm running into some minor complications that we are just watching for now to see if it turns into GvH. I have diarrhea everyday, no cramping, no nausea that's just the way it is. But I am still running a low grade fever at night and am always cold and ache all over. During the days I feel better which is good, but the fever always returns. I am not sleeping well with the fever, either hot or cold all night and last night I didn't go to sleep until 4:30 am and then only after Ativan. I'm not supposed to rely on Ativan to sleep so I have restoril but that doesn't seem to work as well. I've tried Ambien and that puts me to sleep but nothing keeps me asleep. How can my body heal if I don't sleep well at night? I am not a daytime napper so that's not the problem.
I got my official chimerism test back today. The unofficial one said 98.5% donor cells, this one says 88.5%, which is still great. No lymphoma in the bone marrow either. Good news all around, if I didn't ache so much all night I could maybe believe it! The relapse monster likes to come out at night here...
Actually, I should correct that, it is technically day +44 since it is now 1:30am CST. As most of you know I've been plagued each evening by fevers as high as 100.8 which go away by morning and constant diarrea. I've been cultured everywhere and all was negative except the stool which hasn't come back yet. At 10am I received a phone call from my transplant coordinator saying that we now know why I'm not feeling so good. Evidently my CMV titers came back positive. They test these weekly so evidently this deadly illness has been caught extremely early. So I will be doing 2x daily iv's of gancocyclovere (sp?) which thankfully I can do myself. So if that wasn't enough fun for one day I was called with the info that my 84 year old grandfather has a lump the size of an egg under his jaw. He saw a surgeon yesterday who found more lymph nodes in his neck and armpits. A needle biopsy of the salivary gland came back negative and so they did a second. We get results of that tomorrow in time to fight for a full blown CT or node excision biopsy. In the meantime the hospice called him to let him know today that my grandmother who has Alzheimer's is going to die in the next few hours. Way too much for one day. I'm hoping to get back for the service to Rochester MN but we'll see how the counts are going and how I'm feeling. I was pretty close to this grandma, but know that she would not want me to put myself in danger to say goodbye. I said my goodbye the last time I saw her before I came here because this was almost a certainty before I get home.
I'm glad all days aren't like this one. I'm definately having a "loss of control" crisis, I can't plan, I can't take care of the details...a control freak like me could really lose it!!
Have a wonderful weekend everyone. Great news Debbi!!!
Teri Morse Day +44 and 26 more to go :)
Well praise God my Grandmother passed away peacefully at 2am this morning. We were very close and there was no reason for her to hang on. She already has her new body and best of all a new mind! It makes me happy to think of her as she was and not how she was when I left and said my goodbyes to her. I fully expected to travel back for her funeral as I had been told quite a bit earlier that I could. But evidently this CMV virus has changed that and my passport out of Omaha has been revoked even though I would be in Rochester, land of the Mayo Clinic. I'm sorry not to be there but know that she would never ever let me take a chance by going. But she's in heaven and I need to keep fighting for my life here on earth. Other than that no news. My husband and kids will be here tonight and my two oldest (13 &9) will stay for the week with me. It will be good to have company on Monday while I'm not at the services. I'm hoping that it will get warm so that maybe we can do some outside walking, I'm so ready for spring!
I haven't written for awhile because I've had company for almost the last two weeks straight. Friends, kids, friend, friend. Not much time to myself but boy is the time going fast! I'll have Wed-Sat to myself and then friends on the weekend. Then a whole week to myself before my sister comes down for the last week to take me home, God willing!! Day 70 is two weeks from today!!! I realize that I may not get to actually leave Omaha that day, but hopefully by the end of that week...Actually I'm not sure I want to leave this land of daily maids, buffet choices and no vehicle so no running...It's kind of relaxing. (I can say that now that I'm winding down)... No new news here, still on the ganglovir for the CMV+ but hoping to get to oral med by the end of this week. No sign of GVH - I'm hoping for some real minor skin stuff to get the graft vs. lymphoma effect...
Has anyone heard from Skip about Deb Walker?? I'm a little worried about her trip to KU for the staph infection since I haven't heard anything for a few days...
Take care everyone, thank you so much for the cards and emails, they always make my day!
Well here I am at day+59, 11 days from possible discharge and what am I doing?? I'm catching a cold!!! Low grade fever, sneezing and runny nose - great. I also face a week of restaging which is scary enough without the cold. If they find any sign of lymphoma I get to stay here and try to encourage some Graft vs lymphoma. If the scans and bone marrow are clear I get to go home April 1.
I don't care if I have to stay for the cold or because I develop some GVH on my own. I am just scared to death that they will find some lurking lymphoma after all this time. And of course all of the symptoms are starting in...achy nodes...most of you know the drill...they all go away after you get the all clear.
Please pray for clean tests for me. My CMV has been negative for the last two blood tests so I've been switched to oral and that shouldn't keep me here.
Thank you for all of the support, especially your funny cards Wendy, all the cards make my day and give me a reason to get up. I'll be here by myself all week during these tests and that's pretty nerveracking too but my husband is getting the house ready for me to come home and is really working hard. When it comes right down to it, this is one thing that you have to do alone no matter how many people you take along. Just you and God to face possible bad news...the best companion I could have.
How are you doing Deb?? Been thinking about you.
Teri Morse Day +59 mini MUD allo PSCT University of Nebraska Medical Center
Well, I'm supposed to go home 1 week from today!! But I have to graduate from all of my CT, BMB, cytology testing first. So this will be a very stressful week for me especially as I am alone here.
But...the worst part is that I've come down with some bug and they can't figure out what it is. Low grade fever (100.8 at highest), stuffy nose, drainage and a very very sore throat. Just the kind of thing that could keep me here awhle :(
I have a dr appt in one hour and we'll see what will happen. I'm sure I'll have a busy schedule for the rest of the week.
I love this place. Yesterday I didn't know when my testing would take place to restage me for my release and by today I have had a BMB w/Versed :), and a C/A/G CAT scan at 11:30 this morning and was called at 3:15 with the results!!!! They are CLEAR!!!!! All I need now for my discharge next week is the bmb to come back clean and donor cells over 50% (they were 85% at day 28) and to feel good!!!! So far a go on that one unless this diarrea that just started holds me up (hope its from the Zithromax)...
I could be home by this time next week!!! Thank you God!!! Thank you all too, couldn't have done it without your support!!!! I'll be back on Tueday with the rest of the results - please PRAY!!
Thanks! Teri Morse Day +65 of +70 day mini MUD allo
Today was my doctor's appointment and the rest of my tests looked great. No lymphoma in the bone marrow and I am now 95% donor cells. So, since I feel pretty healthy and don't have any on-going problems my dr. agreed to let me go home!! I will be back every two weeks for check-ups and see my dr at home the week in between!
Thank you so much to everyone...for meals to Todd, for help running the kids, for cards, emails and gifts for me, for helping Todd remodel and helping him to clean and do laundry...the list of thank yous is endless.
Biggest thanks is for being my prayer warriors and as always all praise goes to God - the Great Physician!!
Love Teri Morse and family
WEB MASTERS NOTE: If ever there was a time when April Fool's day worked in reverse this has got to be it. Good luck, good health and long life to you Teri, and your family.
On Sunday morning Teri had a blood vessel in her head start bleeding and she was not able to recover. It came on very quickly Sunday morning while she was looking for a church for us to attend for Easter service. She was at the computer and her brain just started to shut down from the pressure. I was with her at the time and we got her to the ER right away, they did a CAT scan and then she was operated on - but there was too much damage done by that time. We kept her on the respirator until we could get the children down to say goodbye but then let her go home.
I just wanted to let you know what was happening - if you could forward this to the list I would appreciate it thanks-