Locks of Love

Hannah, my 4 year old, finally decided it was time to cut her hair. I donated my hair March of 07 and at the time she said she wanted to do it also when her hair grew out. So today after her bath she announced it was time to cut her hair. We measured and there was enough so I cut it off! I am so proud of my daughter for willing, and wanting to help other! She was talking bout the little girl who would wear her hair as we cut it off. I tried not to cry! It is amazing how a trial can bring out the best in people and bring a family together! I love my children and don't know what I would do without my husband! I am proud of their strength and support! I love you guys!

Day 2

Today my DH was home and he let me sleep in! I did not get up until around 10:00 which I really needed. I was a little nauseous but after I took my pills and ate some breakfast I began to feel better. My stomach turned a little later in the afternoon as well but I ate a bagel and it stopped. I have been really tired today. Like I'm dragging a little and I have been a little more emotional than usual (crying and getting angry)! But other than that it has been a good day.

The Nurse called from the clinic to check on me in the morning and the Dr. called later that afternoon. I also had calls from friends checking up on me and I felt a lot of love and support from them and family.

I talked to my DH about the fertility clinic. We were told before that there would be no way we could have children and that we should get my tubes tied - we did not - and I'm glad because Johns Hopkins said that was not true. But during those 6 months we had talked about adopting and we both felt really good about that. We have 3 children but really feel we have one more coming to our home. I don't care how he gets here so we decided that instead of spending the money on harvesting eggs now, storing them for years, and then maybe getting those eggs to be a baby later...we would rather spend that money adopting. There are babies out there that need a home and I have already given birth (beautiful births and wonderful pregnancies) 3 times. And we can try after chemo and if it works good and if not we can adopt! No worries now!

1st ChemoTreatment

So I am done and it was not all I had worked myself up for. First thing they did was take my vitals and to poke a JUMBO thumb tack looking thing into my port. It did not hurt any more that a normal IV but the pressure required made my stomach turn a bit. They said they will rotate ports (because I have 2) so one side is not TOO sore. And, if it gets bad, they can prescribe a numbing cream I would apply before arriving. Once the Thumb tack was in, they took blood to test for blood count and other important stuff and then attached a tube. They flushed it and clipped it and sent me to find a seat. There are recliners with IV poles all around the room. They provided me with a fleece blanket (courtesy of the Herceptin drug company) and I sat with my book to wait. The doctor came and had me sign some forms saying I won't sue if I have a allergic reaction to one of the drugs and talked to me about harvesting some of my eggs (because the drugs can cause me to become sterile), gave me the number to a fertility clinic and then I waited some more. After seeing that my blood count is ok they added a bag of fluids to the IV and some nausea drugs and I think a antibiotic. They also gave me a pill for nausea to take today and then one tomorrow and Thursday. When that was in me they began the drugs. The Methotrexate is yellow, and that came first, then the clear Vinorelbine. I read some and slept some then used the restroom. After about 2 hrs of IV fluids (I did not have my watch to know exactly how long) I was done. I made followup appointments and waited for my ride. I was very hungry by that time so we stopped and I got a salad and a chicken sandwich, picked up the kids and came home. I am feeling really good so far. I am a little tired and have a slight headache but nothing bad. they say day 2 is the worst so we will see. they also say the first time is easy and after that it gets harder so I mat not know the worst for a few weeks. Next time I will pack some snacks. They also said that if I suck on ice chips during treatment it will help to prevent the mouth sores because it will dilute the drug secreted in my saliva. So I think I will stop at a drive through and get a cup of Ice next time as well. I will get a bag all ready "My Chemo Bag" that will carry my blanket, a small pillow, my book, snacks and candy to suck on when my mouth feels yucky. Then I will bring ice and perhaps some juice - although with all the fluids they gave me my bladder filled fast so liquids may not be a good idea!

Port Placement

Right after - looking like an Oompaloopa (all orange from the iodine stuff) and looking tired!

I had a port placed on the 3rd of July and that went well! I am having some pain but my plethora of pain killers takes care of most of it! It looks really bad though: it is really bruised.

I was a little nervous for the port placement surgery. The only surgery I have ever had was my tumor resection - huge, lone, massive, and debilitating - so I did not have a fair picture to relate to!

Day 2! Looks good, feels sore.

The surgery was very easy. The anesthesia was not as deep (if that is how you say that). It put me to sleep but not like the last time where it took me 3 hours before I remembered how to breath on my own. I remember everything until the IV was given and I remember waking up. They say not to lift over 20 lbs for 3 weeks, but of course I could only go 2 days without lifting the baby so I hope I did not move or shift tubing.

The site is tender and looks a little alarming. The port is a bump a few inches below my collar bone and you can see/feel the tube that comes from it, up to the collar bone and then disappears. My husband is not very fond of it but he will have to get use to it because it will be there for a long while!!

They put a double port in. It has two circles on the front but they go to the same catheter and tube. The doctor said that way they can give and take at the same time, It is a little bigger than the ones in pictures I saw but even then it is only about 1 x 0.5 inches.

Day 4. The bruising drained. I taped a gauze over the entire thing last night so my PJ's would not rub but the tape tore my skin when I took it off - making it so much worse!

Starting Chemo

I have decided that it will take a long time to give past history so I had better start with current and work then work out from there in both directions!

So New news is that chemo starts tomorrow! I am very excited! They say that if it works (shrinks the tumor) I will have less pain within a month! That is a hope that is worth all the side effects!

The plan is to do 2 rounds (3-4 weeks each) and then do an MRI. If there is any shrinking or softening we will continue. If not we will adjust dose and/or meds. We will continue with the chemo until the tumor is manageable (there is little to no hope of it ever being GONE) and then use other drugs, surgery and/or radiation to keep it that small.

We are going start with weekly IVs of a low dose (have to get exact dose tomorrow) or Navelbine and Methotrexate.

With the low dose they do not anticipate as many side effects. I will probably NOT lose my hair and have a much lower chance of liver and heart damage. I do have to wash hands, use a foam tooth brush, electric razor, watch my diet, take my temp 2 times a day, and use pads instead of tampons. Side effect we are anticipating are some nausea, low blood count, some fatigue and mouth sores. I think I can live with that list. I guess we will see.

Wish me luck!

About me

I am just starting this page so give me a little time to get it up and running. I have been living with a desmoid tumor for 5 years now The first 4 and a half doctors said I was crazy and told me there was nothing wrong then they found it when I was 6 months pregnant. I had the baby and 3 weeks later 6 lbs of tumor was removed from my right gluteus muscles. I was good for about5 months before it returned. Now, a year later, I am still in constant pain and working with doctors trying to find drugs to help my life become manageable. The longer I have this, the more I desire a support system. I cannot find one, so I am creating one. If you or a loved one are suffering with a desmoid please help me group and find a voice so we can be heard. We need to find a cure and we need to support one another!!!