Wednesday, July 28, 2010
At which point her head exploded.
Just in case you don't remember, a hotel room was one of the options that my doctor gave me, so I thought we had made a good decision.
I was told that, and I quote, "they absolutely forbade me from exposing others by checking into a hotel room".
So, it's ok for me to go home and expose my home and pet to the radiation, but it's not ok to go to a hotel and be holed up in a room for 3 days?
This whole conversation led me to find out that I would have to take 3-4 days (that's a whole week in summer session, which equals out to a months worth of material in a regular semester, which we cover) off work. If you remember I had just backed out half way through the first half of the summer because of my surgery. While they had and continue to be super understanding and supportive of everything, I was pretty certain that this would not go over well.
So, I rescheduled everything. It will go like this now:
August 6th: I will take my last doses of the fast acting thyroid hormone that I've been on since right after my surgery. I will also start my special low iodine diet this day which includes me eliminating nearly everything that I love from my diet. I will post about that later, but just suffice it to say that all I can eat is veggies, fruit, and Matzo bread. Should be fun.
August 12th: This is the last day of summer 2 classes and I will have all my calculations done and entered before I leave the school that night.
August 13th: I will go into the office for some quick blood work
August 16th: I will check into the hospital as an in-patient to complete this treatment. I will be in complete and total isolation for at least a couple of days, so this solves the issue of where I'm going to live for those days.
August 20th: I will travel back to my doctor's office where I will have my total body scan and, hopefully, will be declared free and clear of this issue for awhile.
The only thing that I will be missing is our annual and mandatory associate faculty meeting that happens the Thursday after I do my radiation. As far as I know, I won't be able to attend, but my boss has been super kind about this an agrees when I thought it was the lesser of two evils.
While I'm in the hospital, I'm going to start a detox plan that I've done in the past, but also include an external detox, so that my radiation levels drop faster and I won't be such a risk to Caleb and Piper. That's really what I'm the most concerned about is exposing them to something that could affect them long term or in the future.
I'll also be investing in a Geiger counter to monitor my radiation levels. Words I never thought I would ever formulate into a sentence.
Saturday, July 17, 2010
Weight: 29.6lb (81%)- I keep waiting for her to break that 30lb mark, but she just hasn't gotten there yet. I'm not sure why I consider this some benchmark, but I do...
Length: 34.75in (71%)- She's short compared to where her brother was at this point. Maybe that's where I'm getting the 30lb thing, but then again he was over 20lb at 3 months too.
Head Circ: 19.5 (92%)
All in all we were told that she is growing very well and is very proportionate.
Piper is much more daring and physical at this age than her brother ever was. Anytime we go somewhere, one can be certain that she will be trying to and probably succeeding at whatever her brother is doing. Speaking of her brother, she and he are inseparable still. They play and fight together all day long! They just have the funniest relationship in that they can beat the tar out of each other all day long but if someone else tries to hit/push/etc, the other will come to their aid immediately. I never have to worry about them as long as they are together!
Monday, July 12, 2010
Another, http://ashleyadamsjournal.blogspot.com belongs to a mom of a little girl, just about 4, who is gravely ill and fighting severe rejection of a transplant that she had a few years ago.
The last, http://cotaforemersonw.com/node/46 belongs to another mom of a tiny precious girl who has been fighting after 2 multi-organ transplants over the past few years.
Here's the thing guys, I have cancer, I know that, but I'm going to be ok. I don't know that I would be able to live through one of these different scenarios. To have your child gravely ill, dying in my college friend's case, is so much more than my issues. I will be fine. I will, the Lord willing, be around to see my children grow up, get married, have babies, but my dear friends more than likely will not.
Please pray for these families and little girls now. While I don't know, in person Ashley or Emerson's mom, I feel as if I have known them for years (isn't the internet wonderful!). It just puts my situation all into perspective.
Thursday, July 08, 2010
What he said was that he was pretty surprised that my condition turned out to be cancer because it was so atypical. I really had no symptoms from the cancer other than the lymph node issue and most of my symptoms were stemming from my thyroid being so hyperactive. However, he did tell me that there was a lesion (cancer) on half of my thyroid so I'm wondering if that may have been what started the hyperthyroid symptoms to begin. I'm in the process of researching that one. My doctor did seem a little miffed about the fact that there were 24 lymph nodes in all that were removed and only 1 tested positive for cancer. My response to this was what you would probably expect me to say. I told him, in no uncertain terms, that I had a positive diagnosis of cancer and that I wanted to be sure that I didn't have to repeat this surgery and have all the cancer removed. He just looked at me and finally agreed that I was probably right. Hm.
Anyway, my endocrinologist said that he felt that I was probably "cured" (his word, not mine) but if I wanted to do the radiation treatment with the radioactive iodine then we would do it. I told him that I wanted to do it and do it as soon as possible. Since we are going to go ahead with this. The plan is as follows:
- On the 23rd of July, I will take my last pill that is basically giving me the thyroid hormone that my body needs. This is the part that I am dreading the most because even if someone has a diagnosis of hypothyroidism, they still have some native tissue that is secreting the thyroid hormone that they need, but I have none. So, once I stop the medication I'm afraid that I will be a lump. The best part? I will be off this medication for nearly 3 weeks. Great.
- The 30th of July, I will go back to the endocrinologist's office where I will have blood drawn (by the way the word endocrinologist must mean vampire in some long ago language) and have basic blood panels checked as well as a pregnancy test performed.
- August 2nd, I will check in as an outpatient into Presbyterian Hospital of Dallas where I will be given a rather largish dose of radioactive iodine in pill form. I will simply swallow the pill, be evaluated for a little while and leave. The kicker with this part of the treatment is that I have to be in complete isolation from my children. My doctor told me that I could go home but I would have to be completely isolated from Caleb and Piper, meaning that they couldn't even be in the house with me. Seeing as it would be much more difficult to move them out than to move me, I'll be getting a hotel room where I will be staying for 48 hours, only leaving to get food and go to work.
- On the 6th of August I will go back to my doctor's office to have my total body scan. This is where they will determine if the cancer has spread to any other part of my body. This would normally be a scary part of the test except for the fact that whatever cells take up the iodine will immediately die and I will excrete them in my urine. So, basically if the cancer has gone anywhere else the pill will take care of it. Once again, this leaves me wondering why they haven't come up with a treatment like this for other cancers...
- The morning of the 7th, I will take my first Synthroid, the synthetic thyroid hormone that I will be on for the rest of my life.
So, that's the plan unless there is some snafu that happens, but we're hoping it doesn't. I was so hoping that we were going to be able to do this sooner, but the earliest that this treatment can be done after surgery is 5 weeks and the 2nd would be right at 5 weeks post op. We are just praying for correct timing on this and some other things that are happening in our lives that I can't really elaborate on here quite yet. If the timing is thrown off then we are looking at some expenses that we really don't need nor are we prepared for. I think that all of us are just ready for this to be done and over.
Monday, July 05, 2010
I guess the answer to that is that I'm doing pretty well, considering the surgery that I've had. I'm doing everything now that I did before, changing diapers, doing dishes, doing laundry, etc, just a bit slower than I used to.
I do experience a bit of pain with my incision. Mostly, that is coming from the healing process. My doctor's nurse informed me that the twinges and itching that I am feeling is from the fibers that are repairing the area. The only thing is that when I get one of those "twinges" it stops me in my tracks and I usually jump from the feeling. It's almost as if a small electrical charge is being applied to my body. Such a strange feeling!
Something I didn't really anticipate happening was my reaction to having an incision that is so visible to the public. I am normally not a self conscious person, but I find myself not wanting to be alone in public because of the looks that I have received from some people.
My left arm is a bit of an issue as well, something that I wasn't expecting but is totally normal. Evidently my doctor needed to strip down the nerve that supplies my upper muscles (deltoid, sternocleidomastoid, etc) that allows me to lift my arm and it is one mad nerve. This presents itself as me not being able to lift my arm fully and experiencing a bit of pain from that. I have been told to make sure and use my arm in normal, everyday activities and I will see some improvement from just those movements. I have found that this is true. While in the hospital and early last week I could hardly lift my arm at all and now I can lift it just over half way. It still makes it difficult to do some everyday activities (brush my hair, flat iron my hair, shave, put on deodorant, etc), but I do those things anyway with the knowledge that it will come back.
I will go see my endocrinologist on Wednesday to get a plan laid out for when I need to complete my one radiation treatment and scan and will be pushing for that to happen sooner rather than later.
Tomorrow, Tuesday, is the first day that I'm going to be alone all day with the children and, frankly, I'm looking forward to it. The kids are so out of sorts after having people in and out of the house and not being on the strict schedule that they are so used to and crave. I am going to get them back to normal this week and then I start back to work next Monday. I guess more than anything I'm ready to get my life back and not think about having cancer anymore. It seems that's going to happen sooner rather than later and I'm so glad!
Thursday, July 01, 2010
As soon as I walked in, I found out that the timing that had been set just 12 hours prior was pushed back even further than where we had started. My original surgery time was 11am, but that was moved up to 10 on Wednesday. When I arrived, I found out that I had been moved back to 12. I was a bit nervous, as to be expected, but this news made me a little more nervous.
I was taken back to the pre op area and was prepped for surgery, which involved answering the same questions that I had multiple days before, putting on some compression stockings (that was a sight, let me tell you!), and getting into a gown to hurry up and wait.
After some digging around (this would prove to be the norm for my stay) for IV access, I got some fluids, made a couple of trips to the bathroom and sat and talked with my mom, dad and Jes.
My fabulous doctor walked in right around 12 and we talked for a bit and I lost it. I had been very strong through all this and had hardly shed a tear, but knowing that I was about to be wheeled into an OR and that I had cancer, but not know what they would find when they opened me up, scared me to no end. Jes let me cry for a moment and then helped me pull it together for the entrance of the anesthesiologist who promptly took one look at me and gave me a nice dose of Versed to make me loopy. And we were off...
The last things I remembered were the nurses and anesthesiologist positioning me on the table and then she started giving me meds that put me under and we were on our way.
When I woke up, the first thing I did was locate a clock and quickly determined that it read 7:22. I then puked.
I guess I don't have to remind you that I just had my neck filet'd (as Jes would say) open and I was violently puking. Now, THAT was fun!
That continued on for the next couple of hours with every recovery room nurse giving me doses of every anti-nausea/vomiting drug they had at their disposal. After a phone call to my doctor, they all decided to give me Phenegra, Zofran AND Reglan (a drug that has recently been black boxed) to me all at the same time and THAT stopped it. It also made me high and I promptly passed out.
Forty minutes later I was moved to my room where I would spend the next few days. The vomiting was under control, only happening one more time when I literally ran (well as fast as one can run just a few hours out of the OR) from the toilet back to my bed.
The nursing staff did the best they could to leave us alone Thursday night, but since I didn't get back to my room until nearly 9:30, they did need to bother us a couple of times for vitals checks and antibiotic bag hangs. Around 5am the charge nurse decided to practice his blood draw skills on me and proceeded to poke me twice, blowing 2 veins before both my mom and I asked him to send the lab up when they got in. A few hours later a girl from the lab popped in, found a deeply hidden vein and got the blood they needed in just moments.
I spent Friday just trying to get out from under the fog that is all the meds that were pumped into my body the night before. There was alot of me going from bed to bathroom, walking the halls, and making laps around my tiny room with my mom. The other thing that I really couldn't do well was swallow. I tried to take my thyroid med Friday morning and ended up letting it dissolve on the back of my tongue because it got stuck. We also had to pulverize my pain meds and mix them with chocolate pudding. Let's just say that I don't think I'll ever be able to eat chocolate pudding without tasting that nasty bitter flavoring of Darvocet again!
By Friday night I was getting ready to get home. My IV was bothering me, I couldn't get comfortable, I was able to swallow most things, and I just ticked off at being contained. So, when my doctor pulled one drain tube and asked me if I wanted to leave on Saturday morning, I jumped at the chance. We decided that it probably wouldn't be a good idea for me to go straight home quite yet since the children would probably jump on me, so my mom took me back to her house for the night. This was the 3rd night after surgery and I was feeling pretty rotten, so it was really for the best.
Sunday morning my mom drove me home and I was never so happy to see my chaotic, messy, happy house than I was that day!
My mom hung out with us through Wednesday, yesterday, driving me to and fro and helping me get everything back in order after all the goings on of the last week.
Today, Thursday, I am exactly 1 week post op and am feeling really good. I am only taking the Darvocet at night when the pain seems to be worse, especially when I'm lying down, but I hope to wean off that this next week. During the day I just take Tylenol when I start feeling not so hot. I am also able to do a bit more everyday, so I think that I'll be ok when I'm finally left alone with the kiddos on Tuesday.
We have been so very blessed by all of my friends who have come over to either watch the kids or bring us food just about every other day. On Thursday, the day of my surgery, my friend Kim was here with both of her kids until around 3, when my friend Keri's husband came over with 2 of their 3 kids to watch Caleb and Piper. When it was apparent that I was not going to be out of surgery until late and then hung out in recovery even longer, Keri came over, after a full day's work, and put the kids to bed and sat until Jes got home around 10:30. We have had so many people bring us food, or who are going to bring us food, which has been such a blessing to not have to think about. Then there are all of the people who have been praying for us. I just can't thank everyone enough! We have been put on prayer lists all over the US and we have felt it. I don't think that we would have been able to get through this with such ease and confidence without knowing that we have so many people in our corner. We love all of you and just can't thank you enough!
Ok, so I should wrap up this super long post but I want to give my pathology report too. Again, my fabulous doctor called me himself, in the middle of his work day, to give me the report. It seems that all the lymph nodes that they removed on the left side of my neck all had papillary thyroid cancer in them but all of the margins were clear. He removed the nodes in the central (middle) portion of my neck when he took out my thyroid and those were all clear with no cancer. My thyroid was Hashimodo's hyperthyroid, so all those hyperthyroid symptoms I had been having were coming from that. Since he was in the area, he took a small piece of my thymus and had it analyzed as well. It came back clean too. He looked at the margin nodes on the right side, but those all were clear and he did not extend the incision up that side. My doctor, who has done hundreds of these in his 16 years, says that if he has to assign a number then I would have stage 1 and that since I'm so young and otherwise healthy then I will be completely clear of cancer after my 1 radiation treatment. This was the best news that I could have gotten, not only because it has such a good outcome but also because there is now no question what this was and we know that it can be cleared!