Small Change in Plans

For some reason a bed didn't open up as it should have and they are going to delay the start of Jen's treatment by one day. She will still have the port put in today (waiting for that now), but won't start the HiCy until tomorrow.

Details

Today was a day that put us in much more positive spirits knowing that another Myositis patient has benefited from HiCy. I was also happy to hear that having visitors that are healthy is OK. Anyone thinking of suprising me- you must go through these questions.
Any live vaccines in the past 28 days (live flu?) Had chicken pox in the past 28 days? Had nausea, vomiting, diarrhea in the past week? Any runny nose, cough or cold? Cold sores, blisters? Skin rash?

I also was pleased to be given such thorough information slowly. We were given a large binder of everything to expect about getting chemo both in the hospital and out. - Treatment information, Managing Side Effects, Nutrition, Exercise, Coping, Care at Home, etc. There is some good info about what to do with certain symptoms, anemia, mouth care, taste changes, fatigue, naseau, food safety, etc. I will ask about getting a better oral thermometer. I don't trust the air flow with my digital ear one. Anything over 100.5 and you must contact the doc immediately.
We will wear N95 masks that have better filters in them than the regular ones.

What to pack:
clean clothes for each day- yeah don't have to wear a gown!
soft toothbrush and mild toothpast- flossing only if you do already
moisturizing soap
can't bring your own meds to the hospital- they will provide them with hospital pharmacy
no razors- you have to watch out for bleeding since your platelets that control clotting are wiped out

Meds:
I will get HiCy for 4 days and start tomorrow night.
Mesna will be given to protect the bladder wall from the side effects of HiCy.
After 4 days I will be given Norfloxacin, Fluconazole, Valacyclovir, Amoxicillin.
6 Days after HiCy I will be given the growth factor to speed along the "reboot."

I will do CK weekly to track and will hopefully do some physical therapy too if I am up to it.
I get line placed at 1pm and then we start with hydration. I will try to write or call in between bathroom runs....

First day in Baltimore

Jenny and I arrived in Baltimore today at 11:00. Parking was the typical dizzying experience of driving around those parking garages we used to run up for exercise in Indiana (few hills). But I dropped Jen off at the front door and eventually met her in the HIPOP center. A few minutes later they had drawn some blood from Jenny (about 10 vials) and we were talking with Dr. Hesdorffer in one of the examination rooms. Dr. Hesdorffer explained the procedure, which was exactly as Dr. Brodsky had described it, so no news there. But it was good to have a refresher.

The big news was that Dr. Hesdorffer knew of a guy from WA who had Myositis and came to JH for HiCy treatment! I don't know why no one mentioned this to us before. . . I could have sworn we specifically asked if there were examples of using HiCy to treat Myositis but maybe not. Anyway, this guy was in really bad shape, bound to a wheelchair and couldn't really feed himself. But 2 months after HiCy he was skiing black diamonds in Washington state! (Dr. Hesdorffer made it clear that he had known how to ski before getting Myositis!) So that was good news. Apparently this patient has been in remission for a year now.

We learned that the greatest risk of infection comes from Jen's own gut. Apparently there are bugs in there hanging out that get out of control when the HiCy supresses her immune system. That is why she will take 4 different antibiotics in about 4-5 days. It also means that although she needs to be careful about infection from others, the doctor wasn't AS concerned about it as we thought he would be. We did wear masks in the hospital, which is oddly comforting. We also learned when and where we were going to go tomorrow. At noon Jen will have the line put in and then will be transfered to the HiCy area (floor 4b) where she will begin hydration and eventually the chemo.

We then checked into our hotel, which is fine. We walked down to an indoor market that sold lots of different types of food. Jen got a salad, but I couldn't resist a phatty borrito. In a bit here she is going to wipe herself (whole body) down with sterilized wipes they gave us in the hospital. She will do that again tomorrow morning before going in to the hospital. It will be good to get this started after so much planning. Jen has been a trooper and, although nervous, is also looking forward to getting started.

Go Pats!

Evaluation Day 2

Everything went smoothly yesterday and today. Today I had the MUGA scan, sinus CT, and chest x-ray. I feel better knowing my way around now with registration, parking, and housing. Our housing is very close but I was a little wobbly walking on the uneven streets. The woman at the security desk asked if I wanted a wheelchair and I quickly replied, "No thanks, we are fighting that!" I will bring my walking stick during all of this since I figure if I'm not confident walking now, I will be less so when I am tired and weak.

Glad to find out that we can have our townhouse cleaned more than normal. They are used to this request with others having bone marrow treatments. I was also pleased to see how many hand-sanitizing dispensers there are around the hospital. They are everywhere!

I have started to mentally prepare for being like the other vulnerable folks stuck in hospital gowns and booties. Luckily it won't be long and I am used to it. I am hoping we can find some green areas to sit in but I have a feeling it will just be wishful thinking.

I popped into the blood center where I did pheresis because I wanted to give them a follow-up. I am not sure how much they know about their patients progress after they leave. Since not many Myositis patients get pheresed, I wanted them to know that it did get me out of a rough spot. The nurse agreed that being aggressive with this condition now is the right thing. She has seen so many patients who wait too long to take any serious action.

The hardest part of all of this was saying goodbye to Graham. I know he is happy with family and being in a new school for a month, but we may need to set up the video cam so I can actually see his silly self.

Thanks again for all the well wishes and packages!

Evaluation Day 1

Jen has finished her first day of evaluation. Today she did a pulmonary function test (passed), and EKG (passed), physical/family history/drug review (no red flags), blood was drawn, and urine was sampled. Jen also stocked up on parking coupons.

Tomorrow they will conduct a heart scan and CTs of Jen's sinus and chest. We also learned that the hotel we will be staying at will take mail for us. There is also a grocery store near by and a shuttle to get there.

Thank you to everyone who has been calling and sending best wishes. Keep checking the blog for updates!

Almost There

I saw my Myositis doctor the other day so she could have me fill out some paperwork, do a strength test, take some blood for research, and to answer any questions. We discussed that I did not try regular dose Cytoxan and I again told her I don't wish to. I have seen the severity of this and don't want to play around any more. I owe it to myself and my family to be knowledgable and agressive with this right now.
I was starting to think that I was improving when I noticed some little changes here and there. But after seeing the doctor, we agreed that yes, things are still in need of improvement.
I will go down to 15mg Prednisone pre-treatment. I will take an acid reducer during treatment to help the fact that I will be taking Prednisone with little food. I will take Diflucan now and during treatment to control any yeast issues. Rituxan does not interfere with treatment we were told.
The case manager reminded me of our status as pioneers, both in terms of some snags with insurance and in terms of the excitment for remission and future research. I don't want any praise, just some muscle will do.

Counting Down

The reality has hit and so has some underlying anxiety. I am staying mentally busy with my many lists of what to bring- I even went out and got antibacterial spray, hand-santizers etc. because they don't sell those in Baltimore=) Also trying to keep up with physical therapy since I am afraid of losing muscle during all of this. Doing reps of what is most difficult is the best thing to do- like lying flat on stomach to all fours over and over, getting out of chair, etc. Good news on that - PT folks were happy with my progress since they last saw me in August. Not sure if it was Rituxan kicking in or Plasmapheresis, but I did improve from the summer. They noticed my ability to get out of a chair better and my torso is not so far back when walking. So I have gotten to a more managable level, but not what I could be. I got some adjustable ankle arm weights even though gravity seems to be enough some days.

I will be seeing Dr. Christopher before I start treatment so she can get a baseline of strength, labs, etc. and track my progress.

Andrew videotaped me the other day and it was pretty hard to watch. I didn't realize how I throw my legs, how my hips move all over, and how contorted I move when trying to get up from the ground. It is better than it was, I must remember that. Never underestimate the strength of your big toe=)