Tuesday, August 23, 2011

1 Month Down

So it's been about a month now with my new cells. Things have not been easy, but just getting out of the hospital was a battle, as I just need to be home. I was able to come home on 8/10/11, just shy of my birthday (another milestone- I've lived to see 43!). The first week home was fine mentally, but physically exhausting and painful. Stairs are daunting, showering- difficult to stand too long, and my hands shake like a Parkinson's patient. (my writing is almost illegible) I also broke out in a rash in many places - and that can be a sign of rejection. Luckily? It itched like mad, *scratch, scratch*, which it usually wouldn't in the typical "rejection" type of rash. But I can be different and special, so off to the Dermatologist, and 2 skin biopsies. (no fun there!) I found out the results yesterday, and it is caused by the chemo, not rejection. Whew! Hopefully, I will continue on that note. They gave me a lot of ointments and put me on steroids for a bit, and it's helping the mad itching and healing process.

I am not sleeping at night, even on those precious days where I try to skip day sleeping. I am literally up 1/2 the night, every night now. I've tried different pills and loads of suggestions (dark room, turn off electronics earlier before bed, cool room, reading, etc...) and nothing is working, nor am I crashing after a few days. Wonder why... I did end up in hysterics the other night due to the memories of all this and all the time lost, and just how I felt in the hospital- so trapped and pumped full of poisons; I feel kind of abused in a way, if that's the word I'm looking for. I imagine it won't be the last time for hysterics, but I hope it's not a regular visitor! Chris helped me through it to calm down after an hour or so, along with some of my high end anxiety medication... So thankful for both of them! :)

My cousin and I were texting the other day about getting our children together, as my mom has done all summer with her. The kids love each other! I told her he had camp all week, but maybe we could come over after it one day to play. She said, oh, your mom will text me to set things up.  And from the outset, you see they've been doing this all summer, so it's natural to come out with that, but do you also see where it left me feeling? Like I'm not even the child's mother anymore. Made me cry. And it's not her fault, I don't blame her. But it hurt.

Anyway, things are stable for now for the most part. Let's hope it continues to be so while I look over my shoulder for awhile yet! I still want to write my donor and thank her- I'm just not sure what to say yet, and what "not" to say, as you are supposed to be anonymous. I am just the 42 yr old woman who received cells.
In a week or 2, I will have another bone marrow biopsy to see how far the engrafted cells have progressed. Should be interesting, other than the pain of course. LOL!

Friday, July 22, 2011

They are in!

Well, thank you all for your well wishes, good thoughts, and prayers!! I received my cells this morning about 11 am, and they are slushing around in my body, hopefully going to work as needed. =)  It was done as a blood transfusion for the most part- the nurse pushed them through my port slowly. It made me pretty nauseous, so they gave me drugs for that, and kinda just knocked me out. (I've been so tired all week from so little sleep in a hospital.)  Then it was done. I got some rest from the knockout drugs and ate lunch! (Big deal!)  It's made my legs ache a bit and so I got some pain medicine for that, otherwise, I don't feel much at this point. The big goal is to not have them get rejected of course. Just go in, become the new base for the white, red, and platelet cells to grow from in the next few weeks. And work like superstars, so any leukemic cells will be destroyed. And so the waiting begins again....
Not much else to report!! Thanks again, friends. =)

Monday, July 11, 2011


Well, I am on the edge of yet another hospital admission. The big one. I am dreading it. Another 3-4 weeks of no life, but nurses, doctors, and taking my vitals every 4 hours.  I know I should be grateful that I have a bone marrow/stem cell donor, but I feel so "not well" these days, I'm just not game for all this yet. But I really am grateful to the unknown 23 yr old woman who is taking injections daily to up her white cells just for me. You are a saint, whoever you are, and I love you for being so willing to help me like this.

All that medical miracle stuff is great... I just don't want it to be me.  So much can happen where things go wrong, I fear this admission. I fear this is a mistake. I feel like I'm leaping into a chasm with blind faith that someone will catch me. They say this is the best chance I have. Saying goodbye to my cells and hoping hers take over and fix everything. I'm sad that my body has failed. I'm still stunned after all these months that these words are in my daily life- stem cell, donor, transplant, chemo, chemo, chemo.... I have no idea what happened to make my life this way- I am certainly not living the high life here.

Anyway, the killing off of my cells (for the last time, I hope) begins on the 14th with more chemo for 6 days, then a rest day, then on the 21st, I receive the new cells as a transfusion. Then I wait to see if they take or reject, and I'm sure, receive a billion drugs in the meantime in the weeks that follow.

That's it for now!

Sunday, May 15, 2011

Milestones Passed

It's been awhile since I have *wanted* to write, but things are moving in a better direction now, and I am feeling more up to it. I did get out of the hospital on April 16th after 2 months, and recovery has been slow. The wait for the bone marrow biopsy to see if the 2nd month, and 2nd harsher treatment, worked was extremely difficult- so many emotions running through my mind, so much disbelief that it would work, and basically wondering how many days I had left here. What would they try next? Could my body take it? Would I even want to continue this misery?  Luckily, the 2nd treatment put the Leukemia into remission- 0% cells detected- the best I could hope for!  Gratitude and relief for a second.... as the road is still long.

According to treatment plan, they do a "clean-up" week of chemo in the hospital to make sure to get anything that might be hiding in the cells. I have just completed that, and am back home today, waiting for the fall-out this week. (The week after the chemo is terrible on the body- makes me very sick and tired all the time.) 

Hopefully now, they will find my donor, and then it's back into the hospital for 3-4 weeks for the transplant and some recovery time there.  If it takes too long to get the transplant going, I will have to endure another "clean-up" week, so as to not lose the remission. If untreated, it usually comes back within a year, so there is more work ahead!

But things are looking good right now- I am thankful for the support I receive and well wishes.  I hope to find a little "life" in my spirit in the next few weeks before my next battle begins. =)

Wednesday, March 23, 2011

Big Sigh.....

Well, so much has happened, and yet, essentially nothing has changed. I had a bone marrow biopsy approximately 2 weeks following the chemo week. The results showed that nothing had changed. My stats are the same in regard to the % of leukemia cells in the marrow. (They are looking for less than 5% as a success toward remission, and I'm in the 40's- not even close). The following 2 weeks were recovery and transfusions when needed. Of course the decision of what to do next was discussed, and a clinical trial was mentioned. The clinical trial did look attractive, as it is done outpatient, and after a full month here, I am so sick of being away from my home. However, the goal of the trial was to determine a maximum amount a patient could take of a certain drug. Plus I couldn't get any info on the people who have gone before me, as to the success rate of going into remission. XX It just was too iffy, however it would still be available to me if this next treatment doesn't work either.
I am now doing a week of stronger chemo this week, and not so thrilled. Waiting for all those evil side effects to occur as well.... Still in the hospital- earliest date of release is now Apr 16th, which I doubt will actually happen. My brother was tested as a bone marrow donor, and there is a 25% chance of a sibling being a full match. Obviously now they are going for a transplant, so like I said, Apr 16th is probably a joke.
Yet still, they have to clear the bone marrow to get the transplant to work, so please think happy thoughts for me that this round of chemo will reduce that # immensely! Thanks =)

Friday, February 25, 2011

Hard week!

So yes, I was admitted last Monday to start the evil treatment.  The port was placed under total anesthesia at my request, and might I recommend that to anyone ever having to do that. It might be a little more incovenient for them, but what the hell do you want to remember ANY of that for??  Chemo bag #1 placed around 9 pm, but ran an extra 4 hours (28 hours total, but should only run 24) due to a bad pump. 2nd chemo is done by a push injection and those 3 were done Mon, Tues & Wed nights. So *hopefully* all done with that particular one completely. (there's a chance it could have to happen again, but let's not get there now)
So I am on bag #4 of the continuous chemo and that'll run til like 3/4 am. (nice timing for the changing of all this- it's kind of a ruckus in the middle of the night). No rest in the hospital!
I do, apparently, have the best room in the house- lots of light, big window, and a big room and no roommate, due to the possible infection situation of course. Showering is the hugest pain in the ass, even though they unhook me, it's like being under a watering can. Takes forever and I get cold.
Emotions run up and down each day, with worries about if this will work, if it becomes a transplant situation, and a lot about how people will treat me, and how I will feel about myself and my world once this moves along (hopefully in a success). It's so life altering, that my old life and ways of looking at my days are gone, and I want no part of them anymore. You would think I would be grateful to live or see my son grow up or even get more time, but I have none of those thoughts. Much of what I feel is wanting to escape my previous life and move on from everybody and everything that used to be.
But it's a long road ahead, and I'm sure there is time to work through all this somehow. I imagine there will be a therapist in my future!!

Thursday, February 17, 2011

Time marches on like a runaway train.

So today I was supposed to go into the hospital and start chemo. However, my mother-in-law, who was taking care of my son today and tomorrow, had an emergency appendectomy on Monday night.  I took it as a sign that we should move this whole shindig to next Monday. I'm not real comfortable with the whole "weekend staff" set-up anyway. This should be better. However, the freaking-out has begun. As I type this, I am drugged (Clonazapam- for panic/anxiety), and I have a bad feeling I will be drugged the remainder of my time at home, up until Monday when I will probably need to be sedated and hauled off by some means. Seriously, you can't really understand this until you are faced with it.
I leave here totally intact (minus the peace of mind that has already been destroyed by all this), and when I come home 4-6 weeks later for a 2 week break, I will be someone else. Someone I don't want to be, who feels terrible, looks terrible, and I am guessing will be depressed. I'm sure I'm going to want to go back for more too... (4 more times). Long, evil road from hell.
Anyway, my food prep is almost complete. I am going to try and create some pumpkin and oat "treats" this weekend. Plus get my clothes together and clean the guest room up for my *special* visitor's arrival. Every day marches on with more preparation- the dining room table is full of everything I may want or need for the next month. Total pain in the ass.... =)