October 26, 2012 at 12:42pm
Wow, what a roller coaster! The past week has been really hard.
Here’s what the doctors came to understand over the last several days. After my allergic reaction to the Vacomycin (rash) another rash took over, that one being the result of what we now know is early engraphment syndrome (EES). This means that I received a really good “cell dose” from my donor and my immune system (what was left of it) began fighting and rejecting immediately. This caused fevers, chills, rash and gastrointestinal issues. It took several days to figure out that it was engraphment issues because it also looked like an infection, virus, or fungi. The treatment for EES (Early Engraphment syndrome) is large doses of steroids. The problem with starting steroids too soon is that they have the side effect of suppressing an immune system, and if I were to have had a bacterial or viral infection, the steroids would have suppressed what I needed to fight it. So, the docs waited 5-6 days. Finally, after nothing grew from the blood cultures, they gave me the steroids.
With that, came another set of problems. Most people, when they receive steroids, only get small doses. I was receiving 70 units a day. That made me feel so amped up and jittery, I couldn’t sleep. However, the rash subsided, as did the fevers, almost the moment they gave me the steroids. Process of elimination - early engraphment syndrome!
Today they are reducing the steroids by half and hoping that the engraphment syndrome doesn’t return. You can bet I’m on the lookout for any skin changes and of course freaked out that a fever will return. Fingers crossed!
Bottom line, I’m exhausted. Feels like I have slept in weeks. I receive regular infusions of platelets and packed red blood cells to keep me going while waiting for my (her) white blood cells to begin to replicate. Right now I’m at 0.3 WBC. That is not abnormal on Day +14. I wait anxiously for those counts to rise.
Having been through this once before, I thought I was prepared. However, as the days pass and more things happen to me that I didn’t expect, I’m constantly reminded how out of control this feels and I’m scared. I know, as the days pass it will hopefully become clearer, but living day by day is harder than I thought. Cancer isn’t just hard on me physically; it’s hard on me emotionally too.
It’s been challenging to get to the blog in the last few days. As I continue to circle the same drain for the last four days, not a whole lot to report. Same ol’, same ol’, nausea, vomiting, fever, chills and an overall ache. I had a CT scan yesterday to rule out any internal infection, but thankfully, all clear! My blood cultures continue to come up negative, which is a good thing as well. That means that these persistent fevers are more likely due to a low white count, or an allergic reaction to the Vacomycin (causing an irritating, itchy, rash all over my body) or the nupogen injections. With all the medications on board, it’s hard to say whats causing what. The most important part is that nothing is happening here that they haven’t seen before. Dr. Forman said it could be this way for another 5 days or so as we wait for engraphment.
I spend my days in bed, with little energy for much else. The big energy push comes when I have to shower. When I feel up to it, we’re watching The Wire.
As always, the love, care, support and well wishes me the world to me.
It appears both from how I feel and my blood counts, the bottom of this journey has arrived. Here’s to hoping the only place to go is UP!
Feeling pretty weak and in the bathroom often —- use your imagination.
I began to run a fever today. It is either a result of some infection, but more than likely it’s a result of the newbie (donor) cells attempting to make a home in my body and finding some resistance from my ‘old’ self. I was started on an antibiotic ‘just in case’ and quickly developed a severe allergy reaction called red man’s syndrome. Nothing too serious, but Vancomycin is off the preferred drug list forever!
I mostly sleep all day, with little energy for much else. Food drips through a bag so I don’t have to worry about getting and keeping down the nutrients I need to help those newbie cells grow. If I’m awake, I’m watching Homeland! Love that show!! Next, The Wire.
As always, I’m appreciating the notes, cards, emails, fb messages and the like. I can’t wait to feel well enough to actually be bothered I’m so isolated.
For all my breaking bad fans!
October 15, 2012 at 9:36pm
The journey to health is going to be a long one and it felt like it started today. My counts dropped (.8 WBC) and I’m under house arrest meaning I can’t leave my room. I had a tough time eating because everything upsets my stomach, yet another lovely side effect of the chemo. Unfortunately, I still have an appetite, but everything upsets my stomach. I had a nice visit from a friend of mine that went through transplant about a year and half ago and she gave me some tips on food. The best advice she gave me was Cup O’ Noodles! Turns out it was good and didn’t upset my stomach. Thanks Julie!!
One of my nurses had a good analogy when referring to the transplant process. I have recently fired all the old staff in my body (cells) and we hired a new staff (new cells) and we are now waiting for the old staff to pack up and make room for the new hires. The new hires are still in training and I can’t wait until they get up to speed and take over!
I think the next couple of days will be a lot like this one. A lot of stomach and GI pains, trips to the bathroom, low energy, lounging in bed and the sound of a ticking clock. Blah.
Remember your first time trying a lemon?
October 13, 2012 at 10:18pm
Yesterday, at 1:30 am, I finished receiving my donor cells. It was mostly anti-climactic. I slept through most of it because of the pre-drugs they gave me to reduce any possibility of a negative reaction. It came in two bags that look just like a bag one would get if receiving a blood transfusion. Each bag took about three hours to ‘gravity’ drip. In transplant language, I am now day +1. As of now, my counts are dropping pretty quickly, and I will soon start feeling the mental and physical effects of my lowered counts until those new, precious stem cells begin to reproduce (engraphment). I am told engraphment can take up to 21 days to occur. Presently, my WBC is at 1.4, and once it drops below 1.0, I can no longer leave my room. Luckily, up until this point, I have not felt horrible. There have been moments here and there of feeling a bit crappy, but overall I feel fine.
I have to be patient. I want these new donor cells to come into my body and begin to fight any of my remaining stem cells and any microscopic remaining cancer cells and ultimately WIN and eradicate my old blood system. As the doctor would say, we want ‘a little battle’, but not too big. It’s a careful balance. Too much is too hard on ones body and too little won’t kill the microscopic cancer cells that most likely still remain, even when I’m in “remission”. There are many hurdles yet to come and I will keep everyone updated as the days go on.
Here is the video of the day:
We love dogs. (in slow motion)
October 11, 2012 at 10:42pm
Day 4 ( or day -1)
Today I felt some of the effects of the chemotherapy. I was a little more fatigued then I have been in the previous days. Tomorrow I will receive my donor cells. We do not know exactly what time I will receive the cells, but we know it will take at least 2 hours because the marrow takes longer to infuse. I am anticipating a tough 3 weeks ahead after tomorrow, but more than anything I am ready to put this part of my life behind me.
I haven’t lost my hair yet, so all of the nurses are getting a kick out of “cuck fancer” in the back of my head. I imagine I will start losing my hear early next week.
Until my next update, here is a video.
P.S. If you agree with this video or you can get through the whole thing then you have every right to vote for this candidate.
October 10, 2012 at 10:39pm
Today was pretty uneventful and in the cancer world we will take that. I am feeling minimal side effects from the chemotherapy but nothing near complaining about. I am pretty anxious about getting my new donor cells on Friday and anticipating what the recovery process will be like.
So until tomorrow, here is the video of the day!
That is a lot of people at one show. Gotta admit it, it’s catchy.
October 9, 2012 at 8:33pm
I want to start off by thanking everyone for all of the kind messages I have been receiving the past few days. It really helps me get through the journey ahead. I finished my chemotherapy last night at about 10:30 pm, after having to chew on ice for about an hour to reduce the possibility of mouth sores. I was lucky and did not receive any mouth sores and the side effects of the chemo are not too strong today. I am feeling pretty good and I’ve gotten up and walked around the hospital a few times. The hardest part for me now is coming to terms with the fact that I will be in this hospital for the next 30 days having to do very tedious and systematic routines that include washing my mouth with 3 different products each day, getting my blood drawn 2 times a day, getting my vital signs checked every 4 hours, making sure I get up and walk when I am feeling good to keep my muscles strong, along with eating at least 3 meals a day.
But I truly do not have anything really to complain about yet. I am getting comfortable and I am ready for the journey ahead.
P.S. Here is the video of the day!
All he wants to is sing Nicki Minaj!
I’ve just been admitted to the 6th floor of the City of Hope, room 6207. This will be my new home for the next month. Everything is on schedule, with hydration occurring and chemotherapy later tonight. They say it shouldn’t get bad (the effects of chemotherapy) until tomorrow. So, for today, I’m busy making my room homey and making friends with the nurses, which are by the far the best nurses anywhere!! Sitting in the room, I can’t believe I’m here again. It seems just like yesterday I was here and thought I’d never return. My spirits are high and I’m ready to take on whatever comes my way.
I am going to try and update a little something everyday while I am in the hospital, so please check back as often as possible.
Thanks for all your support!
P.S. You are all here with me! Thanks Bonnie (See attached photo) P.P.S Video of the day Don’t judge a book by its coverhttp://www.youtube.com/watch?v=zv2Fbk47x8s
September 28, 2012 at 3:52pm
Cuck Fancer- My Update
So much has happened since my last update, so here is the most simplified version. I had a PET/CT scan about 2 weeks ago to show the doctor where the cancer is before the transplant. This is going be our base scan for the next year. Contrary to what we originally thought, I am completely PET negative (no cancer), going into this transplant. The doctor allowed me some time off (from chemotherapy) before my transplant. This is very good news. The best chance I have for the cancer to not come back is to be in remission before the transplant.
Originally my donor was going to donate on October 17th, and I was going to be admitted October 9th. Now she is able to donate on October 12th, so I am starting pre-transplant chemotherapy this Wednesday, October 3rd, and will be admitted to the hospital on October 8th. I will receive 5 consecutive days of outpatient chemotherapy between those dates. On October 8th, I will receive more chemotherapy one last time to make sure everything is gone. On October 9th 10th and 11th, I will be receiving anti-rejection drugs prophylacticly because of the high risk of Graph v Host Disease this transplant has.
On October 12th, I will receive my donor cells, which will only take about 20-30 minutes. It is a simple blood transfusion. Then begins the tough part. It will take about 10-14 days for these new cells to graph, and we hope they do. There will be some fighting between my old immune system and the new one that I am going to receive.
In this period of time, people develop acute Graph vs. Host disease, but with the anti-rejection drugs and the meds given, we hope we can manage all of the effects that may occur. This is a very serious time because my immune system is very weak. A common cold could become deadly. The average stay in the hospital is about 25 days from the day you receive your new donor cells.
We hope that we can quickly battle the acute G v H stage and move home. Once I am home, I cannot really leave my house for about 100 days. During that time I am on a low-bacteria diet because I am still very weak and immune suppressed. I will be seeing the doctor twice a week to monitor everything. At about day 60-150, people develop chronic G v H, which can be hard to deal with, but most people do not usually circum to it.
This is a journey I am ready for. I have never been more ready to lose my hair, feel weak and sick, only to create a better life for my future. I am ready to take on whatever may come my way.
I am going to try and update as often as possible while I am in the hospital.
Thank you for all the support!