Day 70 and what about posting updates?!?

I know I promised to be more diligent about updating this blog but what had happened…….:) I started to get so many spam saying they were reading my blog. I was kind of upset because I didn’t want just anybody reading it. It was meant for friends, family and those that may have the same disease. I was getting 20 to 30 a day. At first I thought they were people interested in the disease but they all were spam wanting me to use whatever services they were promoting. I talked to administrator of this network and she confirmed that it was all spam. She ran some kind of filter through and I haven’t been receiving any.
So what does that got do with writing current updates?? Well as I became more involved in the transplant procedure I found myself too tired or just not feeling like it. I never thought I would get this behind!!
Today is day 70!! Woowho!!! So what does that mean? It means that I am 70 days out from
receiving my brothers cells and I have totally engrafted!! In other words I am making only
my brothers cells!! That is what want to see. Now this procedure has me very
immunocompromised. Especially because of immunosuppression drugs that I have to take daily
therefore we are at high, high risk for infection. Also certain viruses that you may have
had throughout life that stay dormant in your body after initial infection and never bother
you as long as you are healthy. CMV(cytomegalovirus), herpes virus including the strain that
causes cold sores and the strain that chicken pox/shingles are the main ones that can
resurface during transplant and mess your graft up. So they monitor us every week with a
blood test for CMV which is the one that can very serious if not fatal it starts infecting
your whole body. They want to know that is resurfacing before it causes symptoms. My test
titter-tottered for several weeks but seem not to hit the magic number. On day 30 the test
came back passing the magic number. I am treated with an anti-viral called Foscarnet for
four weeks. Well I have been on it a little longer because the level will not go back down
and stay down. It will fall one week and go back up the next week. This is happening because
they are adjusting the dosage because Foscarnet is irritating to the kidneys and they are
trying to protect my kidney function. So today I was just told it went up a smigen so they
are contemplating taking the dosage up. Like I said the virus is not making me sick but it
causes suppression of the bone marrow. I am making cells but the virus tries to stop it.
Until they get a couple weeks of not detectable, I won’t be able to come home.:/ As far as the transplant journey itself, it has gone very well and most days are uneventful. Again that is what they want to see. The Adult Bone Marrow/Transplant clinic where I get my trouble has a phenomenal program. They have 7 dedicated, very smart and wonderful doctors that are doing great things. The nursing and support staff are also top notch. They take very good care of us. I have been coming to the clinic since I was diagnosed in 2004. I am a familiar face around there and they spoil me! :) Tommorrow I will talk about another procedure I will be doing called Donor Lymphocyte Infusion. Meanwhile everyone stay cool and out of the oppressive heat. Thank you for all your prayers and know that have faired well the last 70 days. I was sicker when I was in the hospital last fall than I am doing this transplant. I have had my puny days but nothing like last fall. May God continue to bless you all. Love,
Irene

Day 8 and hanging tough!

Yesterday was totally different from Day 6. I had to have platelets transfused because my platelet fell to 5!  I also had potassium and antibiotics. I also had a chest  x-ray to make sure there isn’t anything growing in my lungs!  So it was a long day!  I had a slight reaction to the platelets so I received Benadryl and then I was really tired and sleepy.  Today though, day 8,  I only needed potassium and the antibiotics. All my blood cells have dropped which is expected. My hemoglobin is coming down now too so maybe tomorrow I well get blood. I am feeling tired but other than that I am hanging tough!  It gets kind of boring waiting for the cells to engraft and because I have no white cells to protect from infection, I go to the clinic and  back to the apartment!!  Have to stay  away from potential infections. I read a lot and watch TV!  Exciting! :)  I won’t complain because I don’t want to get sick! I still have several weeks before I engraft!  Even then I will still be on immunosuppressant medicine (Cellcept is what it is called),that will make me susceptible to infection.  My dear daughter is my caregiver this week and she is doing a good job!  She cooked a full meal last night for me which is a big undertaking for her!! :)  She makes sure I get to the clinic on time each day because I don’t like getting up!!  I again thank everyone for all prayers being sent up for me!  I know they are being answered.  Until tomorrow be blessed!

Day 6 and counting; Happy New Birthday to me!!!

Ok, ok!  I know I said I would give an update everyday but…….actually I was kept busy all last week.  I was in the clinic everyday at 8am  and sometimes wouldn’t leave until 5pm. Of course my brother had to go with me as well as they prepared him for his part in all this.  So enough with all the excuses just get to the update, right?  Firstly I want to say that I have the most wonderful, selfless and kind brother that didn’t hesitate to withstand  all the tortous injections twice a day for 6 days plus being hooked up to a machine for 6 hours to extract his stem cells.  He then went back on the machine a second day!  He was able to give me 15 million stem cells!!!  Now the injections that they gave him made his bones ache bad enough to need pain meds.  The injections make the bone marrow produce lots of cells at a rate that you dont normal make therefore the bone pain.  He was a real trooper and I will be indebted to him forever.  He would just say, “But it is for a good cause!”  I am happy to be that cause! :)   While he was getting injections, I was getting my conditioning chemotherapy so I could receive his cells.  That entailed 4 days of a chemotherapy to kill off all my cells in my bone marrow and another drug that is an antibody that kills the “T” cells that can harm my new cells. That drug gave me hives on my face after I would receive but other than that the conditioning went very well.  On Wednesday I received the first half of my brothers cells (8 million) at 3:30 pm EST.  So when you have this type of  transplant the day I received the cells  is my new birthday!!   That is why I wrote in the heading Happy New Birthday.  My associate pastor came to bless the cells for me and it was very inspirational to know I am going to get a new healthy immune system!  The procedure is not that exciting but to know that my brothers cells will become my new cells is so emotional for me.  It is hard to put in words how grateful and thankful I am.  Now I just wait for those cells to engraft and that could take another several weeks.  In the meanwhile I take alot of medications to fight infections and an immunosuppressant drug to prevent graft vs. host disease.  That can be a problem if it happens.  That is when my brothers cells could fight my body and cause problems.  Even though we match well, his cells are still foreign to my body and they could attack my body.  That is why they give immunosuppressant drugs with this type of transplant and it will help the cells to climatize to me and work like they are supposed to.  I go to the clinic everyday so they can check my blood to see if I need anything like potassium, platlets, blood, etc.  Right now I have no white cells at all and very few platelets so tomorrow I might have to get transfused with platelets if they are lower than they were today.  I didn’t have to have anything today except my IV antibiotics!  I only had to stay for 2 hours!  Of course it is not like I can go shopping or something like that.  I just get to come back to the apartment!  Everything so far has gone well and I am feeling pretty well considering.  I pray it stays that way! LOL   Thank you all for all the prayers and I am not going to promise to update everyday but I will try harder.  Just know that I am hanging tough even with some trying side effects. Until tomorrow, God bless!

I am finally here!! Day -3 and counting!

Surprise I haven’t posted since I mentioned that I was finally going to have the stem cell transplant. Well yesterday was my first day of conditioning thus the -3 and counting. That means that when I finish the conditioning I will be at day 0 and I get the cells infused that day. Then I am off to the races. The conditioning consist of chemo to wipe out my bone marrow and an antibody to suppress my killer “T” cells so they won’t attack my brothers cells. I start anti rejection drugs tomorrow. I will be taking so much medicine I can start my own pharmacy!! Overall I am doing well except for the hives I broke out with from the antibody and of course it is mostly on my face. Can you say Bendryl please!! I have many challenges to come I just pray they will be minimal. My brother, Roger, has been a real trooper! He has to get two neupogen shots a day to stimulate his bone marrow to make more cells. After you get a couple of days of those your bones start throbbing with pain. He will do this for 4 days then on Tuesday they start collecting his cells to give to me. I will receive the cells on Wednesday and then they will collect more from him on Wednesday and I will get those on Thursday. Then it is wait and see if my bone marrow takes them up and starts reproducing them. It can take anywhere from 3 weeks to 30 days for this to happen. It is called engraftment. So until them I will be so susceptible to infection big time! I will be a walking Petrie dish waiting for any virus or bacteria to come my way!! They will have me on many ant-vitals and antibiotics to try to keep the bad guys away. The problem is the virus that lay dormant already in my body are the ones that can cause major problems! Then I have to ward off graft versus host disease which can be real threatening to me. Hopefully I won’t develop that because it can be serious and make me really sick. So there is alot of things that are real important than just waiting for cells to engraft. This is not a procedure for sissies. I have to suck it and pray alot! LOL I will do my best to blog as much as I can. This is real interesting biology, I just wish I didn’t have to experience first hand! LOL I know the Lord is watching over me and has my back and I will be cured by Him. I must remain faithful and know He is in control of this. I woke up this morning sininging “Jesus Loves Me” and yes I know because the bible tells me so! Thank you all for all the prayers and help. There are so many people in the background that are helping to make this happen. My heartfelt thanks to them too! Please don’t worry about for I am in good hands! Until tomorrow, I bid you all a good night!,

21/2weeks and counting!

Helloooo there! Just wanted to update that we are still on schedule for my allogenic stem cell transplant, May 5th. My doctor cut out my second cycle of chemo by 5 days because the side effects were getting to be too much. Severe body cramping because one of the drugs is neurotoxic as well as my platelet count was dropping too low. Other than that I am feeling well and am preparing for my absence at home. I have to pack for three months! Ugh!! I again I thank everyone for the continual prayers. I am faithful that the Lord is watching over me and is and will be directing this journey. God Be the Glory!!
I will get my apartment assignment by the end of the month. I can always be contacted by email or this blog. I going try real hard to blog more frequently as I go day to day through this but I have know idea how ill I will get. Everybody is different but they will make me as comfortable as possible.
FYI, someone was inquiring if they could send me fresh flowers
or fruit baskets while I am up there. No fresh flowers are allowed and only fruit that
doesn’t have to be washed is allowed to be sent. In other wards, don’t worry about it your prayers are more than enough! I have received gas gift cards as well as restaurant gift cards and I am very grateful because that well help with driving back and forth we have to do and providing meals while I am up there. But your prayers are sufficient! With that said I am going to sign off for now and I will update after I have my appointment with my doctor on Monday! Be blessed everyone! Irene

God does answer prayers, oh happy day!!

Well friends, I am checking in to let you all know that the oral chemo I have been taking is working!!!! The bone marrow biopsy came back that I am down to 10% of disease. I am going to take one more cycle in hopes of getting rid of that 10%! I learned today that I will be going to transplant May 5th!! Hallejiuh!! He is an on time God. He does it in His time because He knows what lies ahead for me. It has been a tedious and worrisome wait but I kept praying and keeping the Faith!! Thank you all too for your ceaseless praying! Keep the prayers coming! I will keep you posted as the time nears and try blog everyday during transplant. I don’t have my address yet but I will pass it on. I will have to stay at least to August. Hopefully no longer! Again thank you all for your prayers and thoughts! I look to the hills for all my help comes from above! God is so awesome! Stay tuned!

When God decides to close a door He will open new doors for you………..

Even though it may be hell in the hallway! :) I must remain faithful even though it may seem like nothing is going my way. I am sorry I haven’t be blogging but it isn’t because I didn’t want to, it just slipped my mind. So here is the update, first and foremost I am doing very well, I repeat I am doing very well. My family and I have taken good care of myself. So disregard the rumors to the contrary. Secondly, I did return to Duke to be tested to see if January treatment worked. Unfortunately it did not but that doesn’t mean there isn’t a Plan C. That is what I getting ready to do, go to plan C. It consists of taking two oral chemo meds that are ridiculously priced. I am blessed to have excellent insurance but you know me I think of those that don’t have insurance and wonder. One is around $15,000 for 21 pills and the other one is $10,000 for 14 days!!! Get real, is it necessary to charge so much? How about the uninsured? How do they afford it? Often times they don’t and they don’t get access to the better treatment. I don’t want to talk politics but please tell me why somebody that didn’t have insurance not want help to get it???! People you don’t have to have cancer to go bankrupt after you go to the ER for something that can be fix and go home with a $30,000 bill. Yes have to pay it if you don’t have insurance and they will make your life miserable trying to collect it. You don’t have to have cancer to be need of healthcare. Unfortunately we don’t stay healthy forever. Once the aging process kicks in and in doesn’t kick in at 90 either, there are preventive things that need to be done to keep you well and can’t be paid out of pocket for the whole cost! Everyone needs health insurance, ok! You can rational all you want but unless you are disciplined enough to save alot of money that you put aside in your health piggy bank, you need healthcare! Ok!? Enough said. So tonight I will start my new meds for 21 days and then they will check my bone marrow again for response. It isn’t unusual for the disease to become resistant over time. It does but there maybe other chemo that it still responds to and that is what we are trying. I can stay home and take it. I don’t have to go to Duke to take it and I can have blood work monitored here until time to go back. I feel good and I was even riding my bike yesterday in the beautiful weather. The new meds will lower white, red and platelet counts so I have to remain cautious and staying out of big crowds and staying away from those known to be ill. I have gotten out a little so I don’t go stir crazy but I have just about everything I need right here at home. I again thank everyone for their thoughts and prayers. I have some wonderful people bring lunch by to say hello and allow me to have adult conversation. Yes it is hurry up and wait but I going to continue to believe God is in control here and he knows what has to be done in order for transplant to be successful. In God’s time and His time is not our time but it is always on time!! I will try to update my progress on these new meds on a regular basis. Be assured that we all are doing well. Please feel free to email, text, call or what have you. Again thanks for all the prayers they certainly help! Until next time take care and be blessed!

I’m back…………

I am sorry I haven’t done an update. I have been so good during lockdown that I even shocked myself! Lol I am doing very well and my white count is on it’s way back up. My hemoglobin is low and will take a little longer to go back up. So I tire easily but my body will eventually get use to it. I will soon have a new nohair-do! My scalp was so sore earlier in the week and I knew what that meant. My hair has slowly been coming out and if I pull at, brush it, etc a lot comes out. Today it has really been coming out and it is getting thinner. So this weekend, I will have Dennis give me a buzz cut. Every where I turn there is hair. I have passed the cats in shedding! :) Next week I will return to Duke and have a bone marrow biopsy and blood work. If the results are where they want them to be, then on to transplant. If not, a second round of chemo. So we are slowly getting there. Everyone has been so kind to us. We really do appreciate all that has been done for us! God is good!
I don’t know if everyone knows about the stomach virus(norovirus) that has been moving throughout the state but they are saying that the most effective protection and way to curtailing it is hand-washing. Even hand sanitizers don’t work that well for this virus, just good ole hand-washing for at least 15 seconds. Wash as frequently as you can especially if your around a lot of children. It can live on surfaces and can be picked up that way when you touch door handles, and other surfaces. It is easily transmitted. Wake County has been hit hard with breakouts. So that is your public health announcement for today! LOL Seriously though these type of break outs make my antenna go up. The symptoms can come on suddenly, vomiting and diarrhea. I am taking the proper precautions when I have to be out. An infection such as this could be very dangerous for the immune compromised individuals. Okay, wash those hands!
I will keep updating as I continue my journey through this labryinth of treatments! Stay tuned and that is all folks!! :) Be blessed! XXXOO

Humbly Grateful!

I have to apologize for not giving an update this week. It has been an uneventful week which is a good thing. Today, Friday, I had to have blood work done and basically I now have only 2 white cells left and not many more platelets but I have had no fevers or anything for that matter. But of course I have followed my doctor’s wishes to stay put. I only go out to have blood checked and I wear a mask when I do that. I return home and try to entertain myself. I haven’t allowed anyone to visit for the exception of a friend who traveled all the way from Long Island to attend a birthday party here locally, ask to come by to see me. Of course she was rudelly greeted with a face mask and hand sanitizer! LOL When someone has a white count as low as mine is now, allows them to be susceptible to some of the littlest, tiniest germs that can take me out. I basically have no means of fighting off infections, colds, etc.
Germs that would not even phase healthy people could be very bad for me. I am taking one
antibiotic and one anti-viral prophactically. That’s it and hopefully my counts don’t go
down any further because I am as low as I can go. I feel good except I tire easy because I
am anemic as well. Monday I will return to Duke for a full overlooking of my progress. If I
am still doing well on Monday then I will come home and wait until it is time to check to
see if treatment worked. I can continue to monitor blood here and only have to report to
Duke weekly. The plan is, if the treatment got all the rogue cells out of bone marrow then
on to transplant and forget about coming home for awhile. Enough of that boring stuff, I
wanted to say how grateful Dennis and I are for all the expressions of love and support
through monetary gifts, basket of wonderful to die for snacks and food.(that is real reason
I haven’t written update cuz I was feeding my face all week)LOL We were totally overwhelmed
by the gifts and out pour of support. I want to thank the many employees that work in
Physician Services department at SRMC for their generous love offering! The nurses and staff
at the Wound Care Center presented Dennis with a large wicker basket filled with wonderful
snacks and books. Just what someone would need when confined to home.(no aint sharing;)) I
even had someone make collards just because I said I had taste for them! Thank you, thank
you, thank you! You all know who you are and we are so thankful for all these act of
kindness! I often brag about my community when I am at Duke. I couldn’t ask to live and/or
be a part of such a supportive community! I continue to solicit your prayers for my family. They have to put up with a lot, me! Lol I must have seen every new movie that has come out on DVD. Then there is HBO, cinemax and Showtime to catch movies I haven’t seen. I do a lot of reading but I am still borrrred! How much tv can one watch without going stir crazy? Oh well, I am comfortably in my own home. The weather was so nice this week, I got some much needed exercise by walking my neighborhood. Yes exercise is part of the plan. We are told to walk as much as we can. Fitness center is out of the question but the great outdoors won’t hurt you as long as you don’t stop and smell the flowers!LOL I am not to be around fresh flowers or plants. Yes they carry germs too! Germs, germs, germs! That is all I here, “stay away from germs as much as possible”! LoL ;)
Until next time, watch out for those GERMS!! XXXOO
Thankfully yours,
Irene

Home Sweet Home

Shhh, it is a secret! I escaped today and if I promised to be good they would not send a posse after me. Thank goodness, it was a last minute decision my doctor made since so far I am not suffering real bad. But I think he was glad to get rid of me. I had to sign in blood that I would stay in and also not throw any wild parties. My blood work will be monitored by my local wonderful oncologist, Dr. Ahmed. I was going stir crazy living out of a suitcase in a motel where the housekeeper harassed us if we weren’t out of the room by 9am. She needed to clean so she could go home early. I wanted to go home too! I won’t know for a couple of weeks whether this chemo regimen worked. I can’t imagine anything possibly surviving the powerful stuff I was given 24 hours around the clock. Myeloma cells are notorious for being stubborn and hard to get rid of. So now we hurry up and wait. Monitor any side effects that still might come about but other than that I am optimistically surprise that I can still stand up, walk,eat and drink. Not all at the same time though!;) Thanks again for everyone’s prayers and well wishes. It means a lot, this can be a lonely existence. I also would like you to pray for my fellow partners in crime, who couldn’t go home today. There are a lot of them sicker than I. They look sad when you get to leave but we are always happy for one another and always cheering each other on! Until next time, nighty, night! XXXOO