Good Days and Bad Ones

I had a very busy couple days this week…since we last talked I’ve had my second jiffy boob appointment. The second fill went well. He didn’t pour the saline all over me this time :) I can definitely see some puffy little boobs forming. However one is filling up higher than the other :/ I know this is normal and they will eventually match. I still can’t really feel anything but some tightness while he is filling. Fortunately my right side is numb where the port is so the needle doesn’t hurt going in. Unfortunately the left side isn’t numb and does hurt blah. After this fill there seems to be a little less skin under the arms so that is more comfortable. I still have a hard time sleeping and found that sleeping on the living room couch is the most comfortable for now.

Last week I called to make my next appointment with the oncologist (she wanted to see me a week after my PET CT) but her office said she wasn’t available till the 12th of December. She (the doctor) called me back that afternoon and said to come to her office right after my PET CT and she would squeeze me in even if they had to page her during her rounds. She said she wanted to keep a close watch over me and boy is she. I haven’t even started my chemo yet! I had my PET CT on Wed. (the 24th) which took about an hour and a half then I went to see the oncologist. I was surprised to get in quickly but I had to wait a long time because she wanted to get the results of the PET CT before I left. They didn’t have a preliminary report ready so she called and told them she wanted it read NOW. We waited for them to call back and Praise the Lord it was clear. I am so relieved.

My blood work showed that my iron is low so I have to go on Monday and Thursday for an iron infusion. I also have to have the picc-line put in ASAP. I tried to schedule that when I got home from my appointment but they were gone and closed till after the holiday. They won’t be back in the office till Monday. I called the oncologists office and they are going to call on Monday to get it set up. The plan is to get all that done next week and start the chemo on December 6th. She wrote out all my scripts which included the Flagel for the fistula, a drug for nausea, the steroid to take the day before the day of and the day after the chemo, some Ativan to help me relax, and a cranial prosthesis aka wig :/ So that was a very very long day and by the time I got home I was so exhausted and in a good bit of pain. This upset me a lot because it was my babies 18th birthday and I was not able to celebrate it at all. I was curled up in a ball on my couch and the more I thought about it the more upset I got. If all that wasn’t bad enough I started to cry and hoped that B didn’t hear me but he did. He sat and hugged me for a while and that helped a lot but I still felt so bad that I couldn’t celebrate and on top of that I was sitting there crying. Hubby did go get him a cake and we sort of sang (he didn’t really want us to) and then we had cake. That horrible day was followed by Thanksgiving. J was home from school and I felt better but not great. Wonderful hubsie cooked the entire dinner (thankfully he is a good cook ;) and it was wonderful. Then the four of us watched some movies including Elf (one of my favorite Christmas movies). It was a wonderful day! I know I will continue to have good days and bad days but no matter what type of day I am also counting my blessings!!!

And now I’ve started my Christmas shopping….on-line of course! Oh and the Pre-lit Christmas tree is up…now I just need to get it decorated…any volunteers :)

Another Fabulous Doctor: The Oncologist

I went for my first appointment with the Oncologist. I liked her very much; she is very nice, and very thorough. She spent a lot of time with me going over my medical history and explaining the treatment. She also examined me. She ordered some blood work to check many things including my blood count, iron, B12, and hormone levels. She is very concerned about how the chemo will affect my crohns disease, especially the fistula which is considered an ongoing infection. She wants me on the flagel during the treatment to try to prevent a flare. She is going to work with my GI and watch me very closely. She will give me shots to boost my blood count. She is worried that I will be more susceptible to lower blood counts. She may also tweak my crohns meds because some may not be compatible with the chemo. I have to have a PET Scan first for a baseline and to check on a spot on the sternum that the MRI showed. The Bone Scan found it to be nothing but the PET Scan will make sure. A week after that I go back to the Oncologist to get the script for the flagel and a wig and to schedule the procedure to insert a port into my chest. When all that is done (hopefully in 2 weeks) I will start the treatments. I will have a 3 hour infusion every 3 weeks for 3 to 4 months. The chemo cocktail will be a combination of Taxotere and Cytoxan. She will also give me something for nausea.

I am doing my exercises and the range of motion and strength in my arms is slowly improving. I am a little impatient about that. I feel like I should be progressing faster. I feel like everyone else would be fine and back to their normal activities by now. I’m still having good days and bad days. Some of the bad days involve my crohns which just makes everything worse. I still wear my jammies all day when I don’t have to go anywhere. I only have a few button down shirts so I save them for when I leave the house.

I mostly just have a tight feeling in my chest and I still have a lot of numb areas. I can definitely feel the expanders in my chest and they feel very strange and sometimes uncomfortable. Its really strange to feel the muscle flexing over top of them when I reach for something or even when I’m typing. The extra skin near the armpits is very uncomfortable. Some days it feels like it has moved further under my armpit (especially on my right side) and when my arm comes down on it there is some soreness. I’m glad tho that the extra skin is there, its one less thing that has to stretch. I just can’t wait for it to start being a boob again.

After my appointment on Friday we stopped at my lovely niece KAS’s house. This was the first time I went to visit someone. It was so nice to sit and visit her and her beautiful baby girl. PRS put her arms up for me to pick her up and I almost forgot and did. Its so hard not to scoop her up and give her hugs and kisses. Then Saturday we ventured to my niece CRSA’s house for my sister-in-laws birthday party. It was so nice to visit with most of my family and some friends. In about a month I hope to be dancing (or at least watching everyone else dance) at my niece CSE’s wedding.

I LOVE MY FAMILY!!!

Trip to Jiffy Boob (and other firsts)

I had my first outing (that didn’t involve a doctor) on Sunday. I have been having a lot of trouble sleeping because I’m just not able to get comfortable. I am a side sleeper but it is not comfortable to sleep on my side and sleeping on my stomach is out of the question. I hate sleeping flat on my back so we went shopping for a wedge for the bed. I also got a good electric razor. With fewer lymph nodes I don’t want to risk cutting myself with a straight razor. After that I went in search of some flat slip on shoes. In order to be comfortable when I go out I’ve been wearing long button down shirts with leggings but I didn’t really have a nice pair of flats that look nice with them. While I was at the shoe store I not only found a nice pair of flats I also found two pairs of cute boots (like ughs). A black pair that is mid calf and a tan pair that goes just above the ankle. I bought them both :) hee hee. Sunday night I tried the wedge with a pillow but that hurt my neck. So I tried without the pillow but that hurt my neck also. I got my wrap around neck pillow (for traveling) and that worked great. I finally got a good night’s sleep.

I had my first jiffy boob appointment Tuesday. I was kind of nervous not knowing what to expect and also excited to take the first step toward my new perky boobs. The nurse came in first to explain the process and to mark the spot where the port is. She used a Magna-Finder to locate the magnetic port and marked it with an x. She used a topical anesthetic to numb the area. After about 10 minutes the Dr. came in and explained that it might feel cold and or a tight feeling. If it gets uncomfortable let him know. He used a needle to enter the port on the right (I didn’t even feel the needle go in) and with a long tube and large syringe he started injecting the saline. I felt this very cold sensation. I told him wow that is cold, it feels like you are pouring it all over me. He looked down and said “Oh I am…well that’s never happened before…the connecting piece at the syringe was loose”. Lol After he fixed that he injected the saline. It seemed like he put a lot in before it started to feel tight. He did the left side next. I did feel the needle pinch on this side. After he was done I could see a puffy area on both sides but mostly on the left. It just felt a little strange but not painful at all. I made an appointment to return in two weeks. I am still not allowed to use deodorant arrrrrrgggg. I am allowed to shave my armpits tho. YAY!!! I went home and had some lunch then took a short nap. When I woke up it was starting to hurt a little bit, like how a pulled muscle feels. So I took me a pain pill even though it was mild…since I am no longer one of those people who toughs it out. I am not fond of pain so why have it :). It still feels a bit sore today but not too bad.

I have been doing my exercises and I am starting to get more range of motion in my arms. I can push with my arms now to get out of the recliner and can almost get my hands to the back of my head to do a ponytail. I’ve been wearing my hair down the past few days to give my hubby a break. Oh look Sense and Sensibility is on…I think I’ll watch it (for like the 50th time :)

Crohns Disease update:
http://crohnsliveswithme.blogspot.com/

Look Ma…No Drains!!!

I saw the plastic surgeon on Tuesday and to my surprise he removed both drains. I really expected to have them in for at least one more week. He said everything looked good and he will start filling me up next week. I think I shall start calling his office Jiffy Boob :) He said everything else looks good. I am allowed to start getting the incisions wet which means real showers. I’ve been very excited about that. It feels so good to let the hot water run everywhere. It still hurts under my arms where the drains went in but thankfully it did not hurt at all when he pulled them out. Unfortunately I am still not allowed to use deodorant and soap and water does not seem to do anything to get rid of the smell. So far no one is complaining and I’m sure it bothers me more than anyone; after all I can’t get away from it. I also haven’t shaved my armpits so I feel very European :/ The overall pain is significantly less. It has become a very strange feeling. I am completely numb from the shoulder blades down to mid rib cage and armpit to armpit. That area also feels very hard to the touch. I think that might be due to the expanders. Even though the area is numb it feels like I have a very tight bra across the front or a board taped to my chest. I guess you could now say I am flat as a board lol. I also have a lot of extra skin stitched back toward my armpits. This skin will be used during the expanding process. This skin is numb also and feels very strange especially when I bring my arms forward or down on it. This will be a very interesting process. I’ve looked at my chest many times since that first peek. It looks very strange and ugly to me. I’ve heard that it is very upsetting for some women to see how it looks and the reality of their breasts being gone. I really haven’t experienced those feelings, not yet anyway. When I look at my chest and my incisions I don’t just see that my breasts are gone, more importantly I see and I know that the cancer is gone. That is what is most important. That is why I chose to do it this way.

For updates on my Crohns Disease journey go to:
http://crohnsliveswithme.blogspot.com/

But…..

When it comes to caregivers my hubby is the BEST of the best of the best! I have had many many surgeries during our married life. As a matter of fact my first major surgery was 1 year and 4 months after we got married. This wonderful man has had to do things for me that no one wants to do (even for the ones they love the most). I guarantee you most newly married men would have run away screaming and never looking back. Most men period would have run if not the first time surely the second, and most definitely the third or fourth time. Not my guy, he takes care of everything I need. Takes care of our boys and everything they need. Takes care of everything around the house, all this while he is working a full time very demanding job.

BUT he cannot put my hair into a ponytail to save his life!

I guess I can let that slide :)

For updates on my Crohns Disease journey go to:
http://crohnsliveswithme.blogspot.com/