I have had a great week…lots of fun with my girlfriends! Brenda arrived shortly after Kimmie left, and we had so much fun shopping, eating, laughing, and just hanging out! As I said earlier, what a great way to end my stay here! Wade is here now, and our weekend project is to figure out how to get all of our stuff packed in my vehicle. I will see Dr. Hosing on Monday and she will decide if I am ready to be released. I have a new “issue” going on…BK Virus. This is a virus that in its primary form is asymptomatic or a mild respiratory infection. The virus then disseminates to the kidneys and urinary tract where it stays for the life of the individual. About 80% of people have this latent form of the virus. It remains latent until the body undergoes some type of immunosuppression. It happens primarily to transplant patients. The steroids and the immunosuppressant I take for Graft vs Host disease are what brought it on according to Dr. Hosing. There are no drugs to treat it, it just has to run its course, which can be a few weeks to 2 months. My team is working hard on managing my symptoms. I am on continuous IV fluids (24/7) to try to flush the virus out of my system. I carry a tote bag with me everywhere with the IV bag and pump in it. My major symptom is pain. Kidney and urinary tract pain is absolutely brutal! In fact, this morning Wade almost took me to the ER….the pain meds I was on had worn off before the next dose was due. They have upped my pain meds to oxycontin and dilaudid which will be much better. If I can prove I can manage my symptoms over the weekend, I think Dr. Hosing will release me on Monday. If not, then I will be here another week. Keep your fingers crossed! On Monday, it will be day +98, only 2 days shy of that magic Day 100. Meanwhile I’m not looking down, I am focused on home!
Here are some fun facts:
I just reviewed my medications list with my Pharmacy Dr. and started counting….22 different meds each day. Quick, grab me an oversized pill container!
American Idol auditions are going on right now at Reliant Stadium, about 3 blocks from our apartment. There are 8000 contestants trying out!
Houston is the fourth most populous city in the nation. Wade says there is only one place hotter than Houston and that is…..hell!
“Houston” was the first word spoken on the moon.
Brenda and me….fun times!
What a fun weekend I’ve had….Kimmie came to see me! We did all the girlfriend stuff – and had a blast! Of course shopping we had no trouble with! We shopped for makeup, shoes, clothes, and what did we do but get me another wig….this one we aptly named the Diva Wig! I have got to stop the wig madness, but there is just one more I want! LOL! Here are some pics:
The Diva Wig at Sam Moon
Kimmie with the Diva Wig
Celebrating Survivorship at Pappadeaux’s
This morning I saw Dr. Hosing and we are thinking that after I see her next Monday, I may be released to go home!!!!! She wants to see how I do after the chemo this week. Otherwise I would not see her again until I come back in a month. I got the second round of chemo started today, 2 shots in the ole belly, everyday until Friday. Really hoping this round isn’t as brutal as the last one! I was in a lot worse shape when I took the first round so I am hoping this one won’t be as bad since I am doing so much better.
It was off to the airport to take Kimmie, lots of hugs and tears! I will be back to the airport in a couple of hours to pick up my girlfriend, Brenda who will stay with me until Wednesday! Woo Hoo! What a great way to spend my last week here – with my two dearest girlfriends having fun! Poor Wade…he is not going to like that credit card bill!
Life is so good…what an amazing journey!
Last night on the drive back from dinner, we saw the Wienermobile parked in a hotel parking lot! I busted a “U” so fast my head was spinning! Here it is, folks!
Whether you are on the wienermobile or my personal journey to be cancer-free and a survivor, here is my motto, mantra, goal, keep me on track thought/ideal: You can’t look down, you have to move forward, or you will never make it home. I am hoping I will be released one week from today! The count down begins! I can’t wait to get there!
MD Anderson gave me a free wig, so yesterday Wade and I went to the Beauty/Barber Shop on the 6th floor between elevators E and F. The shop is operated by Volunteer Services. In fact all the gift shops at MDA are operated by Volunteer Services which I think is cool! We signed in and were taken back by a sweet, shy girl. There were several wigs on display…but I noticed nothing in the red range! Well, they had jet black, dark brown, blonde (that looked like baby doll hair!), and gray. I started trying on wigs. OK y’all, at the beginning of this journey, I said I would not wear a wig…it would be hot and itchy! Actually I learned it is a fun thing to do. Especially trying on all the styles and colors…I really hate to admit this! Gray, black, and blonde were definite NO’s. So I went with the brown. Wade and I had some errands to do after this, and he kept telling me he felt as if he were with the wrong woman! LOL!!! Here it is!
I have lots of good news to report today! First of all the appointment with my neurologist went very well. She said I had compressed and inflamed peroneal nerves that exit on the outside of my legs, just under my knees. These nerves are causing my lower legs and feet to be weak and numb, and it also causes the foot drop. It is definitely not due to chemo, which I was thrilled to hear. It is due to me not having much tissue on my legs right now and being a side sleeper and leg crosser….all the bad things for the peroneal nerve! It will just have to heal. She also doesn’t believe I need to wear the leg braces, only lace up shoes. I was so klutzy with those things, what a relief! Of course I have to break that news to my Physical Therapist tomorrow. If some of my meds are perturbing this problem, it will become evident as I am weaned off my immunosuppressant. My sister, Jan, came to stay with me for the weekend and she got here in time to go with me to this appointment which was great! I also saw the ophthalmologist Friday and had a 4 hour wait instead of the previous appointment which was 5 hours! But everything checked out ok and there are very few blind spots left. Good news!
Jan and I had a great time on Saturday shopping at Sam Moon and then The Galleria. We ate out at Hillstone, which we loved. Our biggest laugh came when she tried on my wig! She graciously agreed to let me post the picture!
Jan left yesterday, and Wade came in last night. I was soooo happy to see him! It had been 2 weeks since he had been here…usually it is every other week. We went to my appointment this morning, had my usual magnesium IV, and saw my Team and Dr. Hosing. This was my strategy: got all dressed up, makeup, wig, jewelry, contact lenses (which they didn’t notice, I’m not supposed to wear them quite yet, but I secretly got permission from the ophthalmologist!) the whole deal. Since I have to leave the apartment by 6:35 to be there at 7:00 I usually don’t do all of this. When my team came in they just really looked at me! I told them I was hoping they would let me go home if they knew how good I felt and looked! Well, guess what!?! Maybe week after next I will be dismissed! Happy dance! Here is the down side….I was due for my 2nd round of Vidaza chemo beginning today, but my platelets are still too low so we are postponing that until next Monday. Two shots a day in the belly for 5 days. If that goes well I will get to go home that weekend. I am praying no other issues pop up between now and then! That will be day +95, just 5 days away from that magical number they use here, 100 days! I’M A SURVIVOR!!!!! By the time I get home I will have been in Houston for 4 months.
Wade took me out on a date to celebrate at Pappas Bros. Steak House. We had a steak which was very delicious! Perfect evening! Our apartment is about 3 blocks from Reliant Stadium and The Texans are playing their first game tonight so traffic is very congested around here. I noticed the tailgaters started setting upon Thursday morning!
Have a great evening!
About to go out for dinner to celebrate!
This has been a good week. Glo has been here and we’ve had a great time. We even sneaked off to Galveston for a few hours and ate lunch on the seawall, listened to the ocean and smelled the saltwater. We ate the freshest shrimp…it was delicious! No, I did not ask permission from my team to be over 30 minutes away from the hospital! I decided to just go with it and I am so glad we did!
On Monday I saw my team and found out that I am supposed to be scheduled next week for my second round of chemo, however my platelet count might not be good enough yet so I will find out on Monday when I go. I also learned that the Graft VS Host disease may be in my gut now, so they have stopped tapering me off of my steroid drugs. The third issue is my numb feet and weak legs, which I will see the neurologist on Friday. So everything is kind of on hold right now. Most of my fellow transplant buds are getting out of here, in fact the ones I knew with related donors are already gone. They just don’t have the issues us non-related donor transplant patients have. The non-related people I’ve been on the 10th floor with all this time are also gone. I may be the last one standing! But I am trying hard and looking forward! My team isn’t talking yet about a time frame.
Yesterday I got fitted with my leg braces and think they will help me a lot. For one thing, I can now walk on a treadmill instead of trying to find air conditioned indoor places to walk! At first I was very uncoordinated and klutsy but it didn’t take long to adjust. I am sure I will have to break them in! I only have to wear them when I am outside the house. They actually make me walk normal again. My Physical Therapist says I have improved. Yippee! I am truly working at it. Lots of walking and elastic band exercises. My Occupational Therapist is working my upper body and the PT is working the lower body. I believe exercise is going to be a key factor in my wellness.
Today’s agenda is to find another pair of lace up shoes with a removable insole to wear with the braces, maybe something not so pink! So it’s off to the Galleria. Hope everyone has a great day!
You know if I haven’t blogged all week, I’m either having fun with Blaire, or busy at the hospital! This week it was both! It all started out with muscle weakness in my lower legs and numbness on top of my feet. So I was referred to Physical Therapy for an assessment. By the end of the assessment, Andrew informed me that my anterior tibialis muscle is very weak due to the steroid treatment I am on for GVHD. This is the muscle going from the top of your foot up the shin bone. By the end of the appointment, I could hardly pick my feet up and arrangements were being made to have me fitted for braces to keep me from falling. When Dr. Hosing found out, she referred me to a neurologist to have a consult to rule out any neurological problems. I had my first therapy session with Andrew on Thursday. I made it through fine, but was glad it was over! When my muscles get tired, it’s very difficult to pick up my feet when I am walking and my feet just kind of go “splatt” on the floor. Weird! Then I had my Occupational Therapy assessment with Vivianne Tuesday, and found out that I will be learning lots of good tricks to deal with Cancer Related Fatigue. She is preparing me for the transition I will make whenever I go home, especially around the week that I will be on the Vidaza chemo every month. I will go to PT twice a week and OT twice a week until I am released to go home, and I think it is something I will enjoy. They are both in the Rehabilitation Services at MDA and have a very nice facility and extremely caring therapists. I am in the process of being scheduled for the neurologist, so I don’t yet know when that will happen. I will be fitted for the braces Tuesday. Another great appointment I had this week was my First Survivorship Program Visit with Nora. It was a 2 hour class, one on one, preparing me for the transition of going home and beyond. I got all the scoop on what and when I can start doing things again, really every aspect of life after transplant. I found it very encouraging, helpful, and hopeful! Nora will be working with Dr. Hosing’s team on my return visits, scheduling different labs, tests, and helping me with any issues I may have. At the beginning of the session Nora told me I am a survivor now and caregivers are now included as survivors too! Blaire and I shed a few happy tears when she was talking about that! My team is starting to decrease the steroid treatment as of tomorrow, and then we will see if my GVHD is going to flare up again. I think this will determine when I will get to go home. So everybody have happy thoughts that it will be OK!
Blaire and I had a great 5 days together! It just passed by too quickly! On Tuesday we met Kelli at La Madeleine for lunch and had a great time! I learned that when nothing else sounds good to me, their potato soup tastes really good! Andrew, (the PT) told me I needed to walk at least 2 extra hours a day for my leg muscles so Blaire and I incorporated walking into shopping. Not a bad deal! I took Blaire to the airport this afternoon and picked up Glo about the same time. I’m really looking forward to spending the week with her, we started off with a nice early dinner at PF Chang. Yummy! I think the next time I see some of my “caretakers” it will be at home, so I am really enjoying spending my last few weeks with them here in Houston!
Everyone have a great weekend!