Giving Thanks

As I sit here and think of the things that I am thankful for, I came up with this list.

1.) For the Love of Family and Friends.
2.) Surviving Stage IV Rectal Cancer.
3.) Being able to find Clinical Trials that are Close to me.
4.) Working Daily at a Job that I find enjoyable at times.
5.) For those who gave their lives so we can enjoy Freedom.

Things have been good this week, still having minor urinary control problems; which seems to be more of a problem at night when I start to reach REM Status. This I will address on Monday when I go back to Karmanos for the work up on the 3rd Trial. I have also been thinking about Life cycles Ending and new Cycles starting. I sent an email to Dr. Heath about this, but as of this posting she has not responded, so this too shall be addressed.
Medically, this week has been filled with no visits to Dr. Steve or the Emergency Room. I have been coughing a little more with the feeling that there is something there to come up, but nothing does; except this morning I spit up some green phlegm, I wasn't surprised. I have a wheezing feeling in my right lung when I breath just right, so I know something is happening. The headaches are still present, some days a little more intense then others, but taking a couple of Tyonel helps for a little bit. Otherwise no other changes have happened medically.
Musically, I have found myself getting into organizing my collection of MP3's and Flac music that I have been collecting for quite a while, last time I counted I had about 63 years of music in my collection. It ranges from Dave Brubeck to Moby to Bob Marley, Metallica and bunch more artists. The Genres I cover are just about all of them, reggae, rock, folk, big band, new age and every one in between.
Well, I'll be ending this here. Enough about my giving thanks. I hope that yours has been safe and joyous.

9 Days Since Last Posting

OK, I just realised that it has been a while since I have posted and I do have a few things to discuss here. I have gotten then information on Clinical Trial #3 and it looks preeettyyy intense, depending on the Chemotherapy Drug given to me at the time of Infusion, will determine my schedule. Ok! I'm getting a head of myself a little here, backing up here a little bit. Trial #3 will consist of an oral drug and IV Infusion. The oral drug is already approved by the FDA for use, so the work up fortunately is going to be on November 30th and it will include the Physical, an Echo-cardiogram, then wrapping it up with a CT Scan; which means that I will be busy for a better part of the day. I should also find out when I will start this Trial on the the 30th, which will be good news, since I'm anxious to get started again.
I have been getting back into the work schedule and getting use to working a full week without any interruptions for the Clinical Trials. I had my 6 year anniversary on Wednesday with the Cable Company, who would believe it, I've been doing Technical Support for that long and have seen a lot of organizational changes along the way. Enough with this.
I've been busy with getting Transcripts from the Colleges and Universities that I've attended, so that I can prepare to go back to College to take up Networking and further my knowledge and career outlook. I am excited about going back after taking sometime off and getting myself employed by a company that has been able to provide me with a stable job, so it is time to get on with things and start looking at a way to better market my skill set and start getting away from the Technical Support end of the business. Don't get me wrong, do the job I love it at times and I also hate it at times. Sure there are corporate policies that are totally wacked, but working around them and daily office politics I enjoy being able to help people and I try to educate them a little along the way. Some calls are better then others.
For now, I'm ending this so that I can concentrate on other things for the day and find out more information on a few personal things that I have let go.

Treatments and More

Well, seeing how it has been over a month now since I typed anything here. Where to start?!?!? Well, October was a month of work, Clinical Trials, Visits with Dr. Heath, PET Scan, CT Scans and sleeping.
The days slipped away in a blurred haze of confusion and wonderment. With bills coming in from Karmanos, I had to address the issue of why they had not been redirected to the appropriate Study Pharmacom to pay and now these have been taken care of. More time spent on the phone getting my Health Insurance Provider to acknowledge why a bill for Dr. Fuerquer, Flower Hospital Cancer Center Radiology, was not paid, but the Bill for Jennifer was from March 2009. This was sent back for reprocessing, since the Representative realised that the mistake was on their end. Thankfully, I was able to keep myself focused and not loose my temper over this, since I've become a little more cynical towards Health Care and how screwed up it has become, but that is for another forum and not here.
The 2nd Clinical Trial that I started, I was fortunate enough to be able to continue into the 2nd Round, since the lesions had not grown that much and seemed to be stabilizing. PET Scan done, results looked good there, then another Infusion. CT Scan #2, results came back a little less then anticipated by me. The good news is that there is no New Leisons on my Lungs, YAY!!!! The bad news is the lesions have grown a little more, thus putting me in the 17% range and at 20% is when I would have been removed from the Study; so I decided to voluntarily remove myself from the Study since it wasn't showing positive progress.
I also readdressed the issue of me not having much control of urinating, so I tried the Condom Catheter, which was a good idea; but it just didn't work. Dr. Heath changed my Meds from Vesicare to Daetrol and this seems to be helping the control issue, except at night I'm still having some challenges with it and have been woke up with myself being flooded and the protection being loaded. More concentration on this will be given to prevention of flooding the towel that I sleep on and having to change my clothes in the middle of the night.
For now I am waiting to hear about the next Study and what I'll have to do in the way of Tests to get worked up and going with it.

Downtime Between Treatments

Well this week is the "off" week from the Clinical Trial. I have a CAT Scan scheduled for Friday Evening and I am still waiting for Dr. Heath's Nurse to call and confirm my Appointment with the Dr. Heath for Thursday.
Mean time, I say Dr. Jeff Forquer at the Hickman Cancer Center at Flower Hospital to go over my 6 month review with him. I asked him to look at the last CAT Scan from Karmanos, since the report noted a lymph node has increased in size and was pressing up against my bladder, thus causing me to having the urge to urinate more frequently and in some cases uncontrollably. I have taken the necessary precautions to prevent embarassing moments in my daily life. I wanted Dr. Forquer to see if I could do more radiation therapy to help reduce the lymph node
Well, I got the call from Dr. Forquer last night and he said that the lymph node is in the lower part of the Sacrum, Tail Bone Area, and it is in the same area that I had Radiation previously and it probably would be more harmful then helpful if I was to have more Radiation Treatment in the Area, so I mentioned to him that I have noticed in the last couple of days my urge and frequency to Urinate situation has gotten better and that I am not getting up 2 or 3 times at night and now I'm getting up 1 or 2 times; which are good signs that something is happening in a positive way. Dr. Forquer and I agreed that I could call them up and come back if I had any questions that I needed answered.
In the meantime, I have been thinking about what has been happening in the last few months, both from a personal and medical view point and I have not slept to well the last few nights. September is National Ovarian Cancer Awareness Month, which means increased advertisements of the symptoms and treatments available; but I suppose education is wonderful for those who want to learn and take action. My problem with this educational stuff being broadcast is, how many people who hear about it actually do anything about it? How many of these individuals, who has heard the about it and wants to do something about it, cannot do anything about it; since they have no insurance or afraid to see if they have Cancer? I don't know for sure. I know Carmen and I have chatted about this and she has several of the symptoms, but she is without health insurance at this time and I worry for her. Ok, that's the medical view point on the topic of Cancer, Ovarian Awareness Month. Personally, I feel good and have become more comfortable with Doctors, Nurses, and the general public telling me that I don't like like the "A-Typical" Cancer Patient; who exhibits the side-effect symptoms that most have. The Side-effect symptoms are Nausea, V omitting, Weakness, and Severe Fatigue. I do deal with fatigue in a minor issue and deal with as it hits me, but at the sametime I know it doesn't help when I stay up later then I should to get things in order, then having to get up at 4am to get into work by 6am, 4 days a week. The 10-hour shifts at work are not bad, but there are some days that I'll go home after working, eat dinner, then go to bed. Yesterday was one of these days, but instead of sleeping through the night, I only slept at most an hour then got up until around 11:30pm. I woke up this morning and felt good, but now that I've been at work for a little over 2 hours, I'm starting to fell fatigued. Lunch will be at 10am and I'll see how I am feeling then and buy a soda if need to.
The other thing that people do not take into account, is the person who has the cancer and their mental state. By this, I mean does the person suffer depression, ie: every day blues or severe depression that requires treatment? I will admit to being depressed at times, but I tend to start to get myself involved with other activities that helps to keep me active mentally and if this doesn't work, then I surround myself with some comedy or friends.
Well, for now I am just fatigued and dealing with it on day to day basis. and waiting for the CAT Scan results.

Clinical Trial, Update

Ok, I've been on this 2nd trial since September 1st and so far have not had any major side-effects, minor side-effects I have experienced are: Fatigue and Headaches. The fatigue is the common side-effect and after the first week, I have been feeling really no more fatigue then usual. The last couple of nights I have been staying up a little later then normal, to get somethings completed. I know that I should be getting my sleep and resting as much as I can, but my personal life is starting to require more attention and I'm really not looking forward to providing the extra attention at this time; but it is necessary so that I don't loose personal items.
I have not discussed my personal matters on here before, but now I feel that it is necessary, so that I can vent/get it off my chest. Since the beginning of this year my Mum has been dealing with having her right hip replaced and she has been having problems with that not healing, infections and going back into the hospital a couple of times. The Orthopedic Surgeon she has is not very good at following up and giving forth right answers to the problems. This will be dealt with in good time. With Mum going into hospital this last time, she found out that the infection in her Hip was not as bad and Surgeon thought and he didn't have to remove the hip, so he packed the hip with antibiotics and sent her to rehab. While Mum was at home she fell a couple of times and the local Fire Department was called out. While Mum was in hospital a woman from Adult Protective Services made a visit and forced her way into the house, scaring the crap out of my eldest sister. Bottom line here, Mum wasn't allowed to go home, since it was a 2 story home and she had to climb stairs to get to the restroom...This caused tensions to run high and talk amongst the family that Mum was going to be moving into a house that had everything on the first floor, which is what we have been trying to do for sometime now, so this is a blessing for us. The move of Mum's stuff is being taken care of in a manner that is not the best, since I still have items at the house and couple of them have come up missing and my inquires into where they are at has been met with resistance. The difficult part of this, for me at least, is not letting my emotion get the best of me and causing more problems then necessary. Plus, when a few of the items that have been moved, no one called me to ask about my personal items what I would like done with them.
OK, enough of my personal life drama and on with the Clinical Trial....LOL!! I have been most amazed at the attention I have been getting each time I am in the Phase 1 Unit, which is good, since I get this from every Nurse in the Unit, at first I was a little freaked out, but now that I have been going up there, I am getting use to it. It is refreshing also to see that they take the time to check on my well being, offer assistance when necessary, or a bit of encouragement when needed. I will be ending this, since the calls here are starting to pick up and I'm needed.

Clinical Trial #2 - Starts

Well, on Thursday I went up to Karmanos Cancer Center and spent the entire day there. The schedule was hectic to say the least. 7:30a I had arrived in the Cat Scan Area or Radiology, then after that Carm and I walked up to the Clinic, where I registered and waited at 8:40am. A little after 9am I was taken inside by the Nurse, who I really wasn't thrilled with, since her bedside manners was not the best. She admitted that she had not worked in that clinic before and was still getting use to it. This made me even more apprehensive about having her around me. She left and the Physician's Assistant Mary Jo came in and went over the new Trial. I was conerned about it, since the information that I read talked about biopsying of the tumor or skin or both, well Mary Jo advised that they would do the biopsy of the skin and that it would not be a big chunk of skin, just 2 little punctures in the skin, that would be about the size of a ball point pen. Great news to hear, I relazed a little more and we discussed my Neuropathy which has been diagnosised at Grade 2, but Mary Jo said that it wasn't since I am able to type on a keyboard and button my shirt, so this too made me feel better, especially after she dropped a dime on the exam table and told me to pick it up, which I did without any problem.
After seeing Mary Jo, Carm and I proceeded to have an Echocardiogram done, which wasn't too bad, except for when the Tech started to jam the wand into my left side at the bottom of my ribs and I started to roll back and she kept pushing the wand in, then I mentioned to her that it was hurting and she apologized. After the Echo was completed, we went up to the Phase 1 Infusion area to speak with Andrea, the Lead coordinator, about the schedule and to get blood and urine drawn. The trial starts on Tuesday, Sept 1st, and proceeds from there with me going back in on Wednesday for the 24 hour follow up. The good thing is I don't have to worry about collecting my Urine and taking it into them, YAY!!! All collections will be done there. We also got mileage forms, so that we can submit them and get paid for traveling and gas, which will help.
After seeing Andrea, Carm and I walked to the Registration Desk, so that we could get our Pass for the Children's Hospital PET Scan area. By this time I was starting to feel the effects of not eating or drinking since 9am, I asked for a Navigator to transport me to the PET Scan. I wasn't suppose to be there until 2:30pm, but I figured if I could get in early then so be it. This worked out, since I was taken in at 1:30pm and was out of there a little after 3pm. Needless to say both Carm and I where feeling a bit worn out and didn't feel like doing much when we got home.
I called Mary Jo on Friday to find out the test results from the Urine and she mentioned that shw would be calling Dr. Schaeffer's Office to get somethings clarified since she was having a hard time reading through the records. I confirmed the phone number and she also mentined that she would be calling Dr. Rubin's Office also. The Urine Test came back negative and she mentioned that in the Report for the CAT & PET Scans it was noted that there was a Lymph Node that had grown, pressing up against my bladder, which might be causing me to have problems with frequent urination. I asked her about this and whether or not it was something new that had developed or if it was there all this time? She came back saying that it was noted on previous reports and that it was being watched. Now, she mentioned that she would have to look into treatment options since she could think out Radiation and Surgery. The Radiation Option may not work, since I had Radiation Treatment in that area back in 2008. Mary Jo reassured me that she would have an anaser for me on Tuesday. I have taken the necesary precautions to help avoid embarrassing moments, but there has been a couple of times that I have had accidents. It will be interesting to see what options they suggest, since I do not want to go wround like this for the rest of my life cycle.
After discussing the Trial and the days that Carm and I would be traveling to Detroit and back I called Mary Jo back in mid-afternoon to let her know that I would be doing the trial, shew mentioned that she was able to get all the information that she needed from Dr. Rubin's Office and was still waiting to hear back from Dr. Schaffer's Office. I told her to call me if she had any problems getting the information from Schaffer's Office and I would see what I could do.
Well, here it is another Saturday Morning and I will be ending this here. More to come in this never ending battle.

Clinical Trial #2 Information Received

Well, last Thursday I received call from Mioko, Clinical Trials Eligibility Coordinator for Karmanos Cancer Center, who was calling to give me a information on the next Study and also to let me know that I would have all testing done in 1 day. So, this means that I will have a Cat Scan at 7:30a, then I see the Physician's Assistant at 9am, then at 11am I have Ultrasound of my Heart scheduled. A short break after, with no food after 10:30a, and a PET Scan at 2:30p. So, it will be another busy day for me and Carmen, with a lot of waiting for procedures to be completed or just waiting between. Hopefully, I will be able to get the procedures completed without any problems and get my schedule set for treatment.
The one thing that makes this Trial a little different from the last one, is the biopsy of either the skin or tumor or both. I am hoping for one biopsy to be completed and not the two. I will have to wait and see how that goes and take it form there. Anxiousness is one thing that I am trying not to let get the best of me, this early, but I know on Wednesday it will be kicking into high gear. For now I will concentrate on working and doing things around the house, until I find out what exactly will be taking place with this Trial, since the material, I have read over states that the Trial is 5 months long. Nothing is mentioned about any other CAT/PET Scans in between, so this will be the one question that I will get an answer to. On the last Clinical Trial I had the CAT Scan during Cycle 2 and was scheduled for Cycle 3, when I got the news of the lesions growing 1 cm, but they are located in a Non-life Threatening are of the lung. This news was something that was a relief to Carmen and I, since we was not informed of this, nor did we think of questioning the location.
Well, with this information being at hand and the wait for Thursday, 8/27, the week will be interesting to say the least. May be I will go through the earlier posts and see if there is anything there that does not sound correct, but then again may be I will leave them alone.