Wednesday, December 17, 2008

Round 3, Day 3

It is Wednesday, day 3 of chemo. I got an early start today. It is 10:15 and I am half way through the first bag of chemo. Today I receive Etopocide and Cisplatin. Yesterday I received the same two plus Bleomycin. Cisplatin is the nasty one that causes all of the nausea, but so far so good. I had a little uneasiness last night, but after taking Compazine, Atavan, and eating several ginger cookies I was fine. Not to mention the Emend, Decadron, and some other anti-nausea drug they give me at the clinic each day. I am heavily armed against nausea.

Life is good.

They have wireless access here that is nice to keep me occupied during my long days. I am enjoying surfing the web while listening to some tunes on my new Zune; given to me by a group of very good friends to help get me through these days. It is a great help. For those of you that are not familiar with the Zune it is made by Microsoft, and is a small media device similar to an iPod that plays music, movies, FM radio, photos, and probably much more that I have yet to discover. It is very cool.

I have not heard yet what my HCG count is from Monday, but next time my nurse comes by I will ask and add it to this posting. I am hoping we get that number down to a three digit number this week. I will let you know.

It is a cold and snowy day here in Michigan, the kind I like. I hope you are all staying warm.

Monday, December 15, 2008

Round 3, Day 1

I am sitting here in the St. Joseph Cancer Center, 2/3 rd's of the way through my first bag of chemo (etoposide). I am feeling good, thanks to many anti-nausea drugs. I met with my oncologist this morning prior to the start of chemo. My WBC count was back up to 4.2. That is good news; normal is 4.0 to 10.0. So I am just barely back in the normal range. Now with this week's chemo treatment it will drop again.

My oncologist also said I looked great. He confirmed that the pulmonary function test from last week was perfectly normal. He reaffirmed that he is very pleased with my progress thus far, and the treatment is working very well. We also schedule my fourth and final round of chemo. It will begin on January 5 and my last day of chemo will be January 20! Just over a month to go. After that he will re-evaluate me to decide what further treatment is needed. Usually there are remnants of the tumors that may be treated surgically, with more chemo, or with radiation. He continues to believe that the drop in the tumor marker indicates that the tumors are greatly reduced as well. We have not been able to retrieve the results of the CT scan done at Wyandotte Hospital yet to confirm the expected reduction in tumor size.

From my blood draw today they will check the tumor markers again and I should have the results by Wednesday.

I hope everyone is doing well and surviving the cold weather (depending on where you live). Ethan rolled over for the first time by himself last night after celebrating Grandpa's birthday with him. He continues to be a joy and is great fun to play with these days. His personality is really starting to come through, and like many boys, he enjoys wrestling with dad. I have the scratches to prove it.

Thank you all for following my progress and sending you thoughts and prayers. This blog has helped me chronicle and cope with what I am going through, and is an easy way to keep many people informed. I did not, however, expect how much strength it would give me. Thank you all for giving me strength through your support, love, and kindness.

Peace be with you all.

Sunday, December 14, 2008

Round 3 Tomorrow

It's Sunday morning, December 14 (Happy Birthday Dad), and I start round 3 tomorrow. I have had over a week off from Chemo and am feeling great. I have had some good news this week regarding my thyroid. On Thursday we saw the endocrinologist and he said my thyroid is back to normal. If anything, I may now have a little hypothyroidism. The good news is that I no longer have to take the thyroid medication for hyperthyroidism, so that means two less medications to take each day.

I also had some news from my blood draw on Tuesday. I was hoping that my white blood cell count would have really rebounded during this week off. If it was normal, I was looking forward to getting out this weekend and going to Megan's aunt's surprise birthday party yesterday, and to church this morning. Unfortunately, my WBC count was still 2.5. So I am still quarantined to the condo for now. It is hard staying home like you are sick, when you are not actually sick. On the other hand, I am happy that I am not sick!

Speaking of being quarantined to the condo, we signed a purchase agreement on Tuesday. That's right, we actually sold the condo! We are scheduled to close on December 29th, and we plan to rent a place for awhile. This has been a long process. Besides having the condo on the market since April with just this one offer, the buyer had told us several times over the last couple months that she was going to make an offer and it never came. So finally it did, and though is not what we were hoping for, it is a palatable loss. In this market that may be all we can ask for.

The other news from the blood draw is that the Coumadin and Lovenox have not changed my bleeding time yet, so they increased my Coumadin dose. Their hope is that by the middle of the week it will be at a therapeutic dose and I will no longer have to take the Lovenox. That makes me very happy, because the Lovenox is the injection that I have to give myself everyday. The shot itself really isn't that bad; I think the worst part is the psychology of it. It's a small needle and truly is a small pick, but the thought of sticking a needle in your belly is what I have to pump myself up for everyday. I thought that I was sensitized enough to needles that it would be nothing. I give shots everyday at work, and I grew up getting allergy shots in my arm on a regular basis. That's not even mentioning the countless blood draws I have had in the last couple of months. I think that if I had to give myself a shot in the arm or leg is would be easier than the stomach. I hear 90% of my patients tell me that they hate needles, and now I will be able to sympathize more with them. I guess if the location of the injection has a strong effect on the psychology of the experience, the mouth is certainly one of those sites. Unfortunately I have not come up with an alternative for the dental injection just yet.

What I do know is that I will be very happy when I no longer have to stab myself in the stomach everyday.

Wednesday, December 10, 2008

Ethan's 4 Month Appointment

Ethan just had his 4 month appointment today. He is 25 1/2" and weighs 16 lbs. 4 1/2ounces. Besides the 2 bottom teeth that are through the surface, Ethan has begun to roll over (from back to stomach), reaches for toys and talks & laughs up a storm! He also discovered his feet this past week.

And, just as I begin to type this, Ethan is waking up from his dinner nap (yes, we sometimes get to eat dinner together in silence!).

Enjoy some recent photos...





Saturday, December 6, 2008

End of Round Two

I spent the day at the hospital on Thursday, but had much better news than the last day spent there. It was the last day of chemo for round two, and a day of follow up tests on my port and my lungs.

I began the day with a dye study of the port to see if it was still functional. The concern was that the DVT I suffered the week before may have involved a blockage of the port by the blood clot. They accessed the port and injected it with dye, then took an x-ray to see if the dye flowed through the port and the catheter (into the superior vena cava). The port was 'wide open' as the doctor said, and I could see it on the x-ray. This means that I could use the port for my chemo that day, and that it would not have to be replaced. The other aspect of the x-ray that I noticed was the clarity of my bronchus (wind pipe). When the mass was found in my chest last month it was pushing my bronchi to the side and compressing it about 50%. On the x-ray the bronchus was straight and did not appear compressed. It is certainly not definitive, but it looked promising.

My chemo treatment went well, and I received some more good news about my blood counts. The HCG tumor marker has continued to drop, and is was 1360 on December 1! If you recall, I started out at >200,000 and was at 5000 at the start of the second round. Normal is 0-5. So I still have a little way to go, but my progress thus far is greater than expected and very encouraging.

My white blood cells continue to be low, however. My count on December 1 was 1.6 and on December 4 was 1.8. The lowest it dropped in the last round was 1.7. My neutrophils dropped to 0.3 this round, as opposed to 0.7 in the last round. These are all indications of how well my body can fight off infection. Basically it can't, so I have been staying quarantined at home lately. Thankfully I have Megan and Ethan to keep me company and entertained.

After I completed the chemo, I had another pulmonary function test. I had a baseline test before I began the first round of chemo. This test measures the capacity and function of my lungs. The bleomycin has the ability to affect the lungs, as did the blood clot if it had moved. The test showed that my lungs were functioning normally, and even slightly better than when I started treatment.

I still feel great, and I now have a little reprieve from treatment. I will start the next round of chemo on December 15, so I have a whole week off! Whatever shall I do?

Tuesday, December 2, 2008

I'm an 'oncology textbook'!

I had a checkup with my oncologist yesterday, and after the weekend that I had he said I am an oncology textbook. Everything that could be happening to me is happening, no matter how rare it is. The good news is that he is very excited about how well the treatment is working. As I see it, as long as the treatment is successful, I might as well be rare.

My last post was Friday morning before my chemo treatment, and before I noticed things were changing. As I was preparing for my appointment I noticed that my left arm seemed edematous, or swollen. The left arm is the one with the port. I noticed when I woke up that if felt a little funny, but more like I had slept on it wrong and cut off the circulation. That feeling slowly improved, but after a couple of hours I knew it wasn't going away. Then I noticed by just looking at my arms the left one was considerably larger than the right arm. My range of motion seemed decreased as well. Since I already had an appointment for chemo I didn't call the doctor, I just figured we would sort it out at the appointment.

Once at the cancer center, I showed the nurse my arm and she was immediately concerned about a blood clot associated with the port. This was what was in the back of my mind as well, but I was still just hoping I slept on it wrong. My nurse, Cathy, proceeded to measure the diameter of each arm, and it was clear that the left arm was swollen. She conferred with the oncologist on call that day, whom decided to proceed with chemo via an IV in the right arm, and then send me to the ER to check for a deep vein thrombosis (DVT). Basically a blood clot in one of the veins of my arm. The chemo must go on though!

Once in the ER they ran a doppler ultrasound on me and indeed found a DVT. This is commonly found in the legs, and is rare in the arms. However, with a port there is an increased risk. The real risk of a DVT is that the clot can move. If it moves to the vessels of the lungs it becomes a pulmonary embolism and is a life threatening condition. The docs in the ER were great. They don't see many DVT's in the arm, so they were in close contact with the oncologists, and together they put me on blood thinners. I am now on Coumadin and Lovenox. The wonderful news is that Lovenox is given by injection in the abdomen daily, and I get to do it myself! The hits just keep coming.

I finally returned home from my 11:00 appointment at 6:00 pm with a bag of needles and my marching orders. I crashed quickly with my arm elevated, and when I woke up a few hours later it felt like the swelling was already going down. The next time I woke up at 1:00 am I noticed that I felt quite warm and had terrible shooting pains in the small of my back. I checked my temperature and it was 100.8 degrees! Normally that means I take a Tylenol and go back to bed, but with low blood counts it means I head to the ER. Any temperature over 100.5 means I need to seek medical attention because it could be the start of an infection that my body is no longer able to fight.

So my mom rushed over to watch Ethan and Megan rushed me to Wyandotte Hospital, for what would be another long day. Again the ER docs were great. They took a chest xray, drew blood, and put me on IV antibiotics and fluids. It turns out I did not have an infection, but may have just had a fever caused by the DVT and the chemo in combination. Within and hour or two my temp was normal and I felt normal again. They decided to admit me in the hospital until morning when an oncologist could examine me. They did find that my blood counts had dropped, which was a shock to me. In the morning at my chemo appointment my WBC's were 5.1, and at 2 am they were down to 1.9! It is amazing how quickly these change, particularly when you add a little stress to the body.

Morning came and I felt good. My biggest concern was that my counts were low and I was sitting in a hospital where there are plenty of bugs to get me sick. The covering oncologist at the hospital saw me and felt the same way. He wanted me to go home and rest. He also spoke with the on-call oncologist at St. Joe's whom also agreed. So it looked like I would be headed home once the oncologist spoke to the discharge doc.

Unfortunately the discharge doc had other ideas. He came in and saw me for 5 minutes, ordered a CT scan, more blood work, a consult with a vascular surgeon, and he wanted me to stay overnight or longer. I said the oncologists were ready to release me, and his comment was "they are just specialist, I have to look at the big picture." I quickly called Megan to call the oncologist at St. Joe's again, whom again said if my vitals are stable, I am better off at home.

They came to take me for the CT scan, at which point I said "I am not getting a CT scan unless someone can explain why it is necessary. I have spoken with 3 different doctors, two of them have said go home, and one of them is requesting all of these tests. Tell me why I need them." The answer was that it is protocol in the case of a DVT to rule out a pulmonary embolism. In the end, that made some sense to me, but I still question why that was not suggested by any of the other doctors, including the one that saw me for the DVT the day before. I still did not have faith in the one doctor that seemed to control my discharge.

I decided to go ahead with the CT scan for a couple of reasons. First of all, a pulmonary embolism can kill you quickly, and if this will show signs of one before I develop symptoms that would be beneficial. I also knew that a CT scan was in my future at the end of this round of chemo to check the size of the tumor, so I could take care of it now. Finally, I figured the doctor would be back to discuss the results of the scan and that would give me a chance to talk my way out of the hospital. I also realized that I could just walk out at any time, but I was hoping to do it through the appropriate channels.

I returned from the CT scan at 2:00, and at 4:00 was still being told the results were not available, So I called Megan and said come get me. At 5:00 there was still no word from the doctor, so I told the nurse I was leaving. If the doctor was worried about a pulmonary embolism four hours ago, I could have died in the time it took him to read the results of the scan! Clearly I am OK to go home. That's not to mention that I was never seen by the vascular surgeon or had any of the other tests he ordered. I think this was the case of a doctor trying to make the hospital more money.

The nurse was understanding and said I would have to sign a release that I was leaving 'against medical advice' (AMA) unless she could convince the doctor to release me. She said most of the docs just sign the discharge once a patient is ready to sign the AMA paperwork so that the insurance does not deny coverage. It turns out, this doc was not willing to do that. So I signed the AMA paperwork, which I found ironic since 2 of the 3 docs said I could leave in the morning. I was really only going against the advice of one power-tripping doctor. I returned home at about 6 pm and had a wonderful night's sleep. I have felt great ever since; the swelling is slowly going down in my arm and my breathing is completely normal--no signs of a pulmonary embolism.

I saw my oncologist yesterday, and he said I am doing great. I am scheduled for more chemo on Thursday and will have a dye test of the port that morning to see if it is still functioning. If the clot has rendered the port non-functional it will have to be removed and a new one placed. I will also have a pulmonary function test on Friday that will measure the effects of the bleomycin on my lungs. I suppose that this may also show any effects of a clot in the lungs.

I continue to run through everything in the oncology textbook, and I continue to beat it all! Bring it on!

Monday, December 1, 2008

Ethan has teeth!

This morning after eating, Ethan bit my arm and I felt his 2 bottom teeth! (That's letters O & P for those of you scoring at home). They are definitely through the surface, but he's too squirmy for us to take pictures. Ethan will officially be 4 months old on this Friday, Dec. 5! Leave it to a dentist's son to get his teeth in early!