Next month isn’t going to be so easy. It’s a biggie – 6 months since my transplant. I have to have another bone marrow biopsy, the pulmonary (lung) test again, a full lab workout, and injections (because I’m like a newborn) along with my regular doctor’s visit. All of this will hopefully happen on one day, but boy, is that going to be a LONG, unpleasant day. I’ll deal with it, though; I just hope Joel can. He’s never been with me for one of my biopsy procedures at Moffitt and I fully admit that I’m not exactly fun company before or after it’s done. In the end, I believe it will be good. So far, my results have continued to be positive so there is no reason for that to change. I do ask that you continue to pray for me, especially on June 25th – that’s the day in looks like I’ll be back at Moffitt. I’ll keep you posted!

Related posts:

1. An Update from Tampa
2. Busy Week
3. Jamie’s Test Results

Related posts:

1. A Valentine’s Weekend to Remember
2. Jake and Daddy go to the Fair
3. +5 and counting

For my gift, Joel and the boys gave me stackable mother’s rings. I love them! One ring is for Jacob with his birthstone and birth date, and the other is for Joshua.

I gave mom a mother’s ring too. I gave her one years ago with birthstones for me, Paul, and Reg. With this ring, I wanted to add all the grandchildren. It was difficult to find one that would accommodate everyone, but I finally found one. The large stone is for mom, and I put everyone else in order based on birth date. So it goes: me, Paul, Reg, Casey, Jacob, Scarlett, Joshua. I put the ring in the plastic canvas box that I made in Tampa. Oh, and for fun, I got mom a flying pig with actual battery-powered wings.

Joel and Jake took me out to lunch at Duffy’s. It was my idea because I got an email that said mothers eat free on Mother’s Day. I had some yummy beer-battered shrimp. Jake was really good; the placemat was a huge asset. He colored, played tic-tac-toe, and did the maze on his matt and mine.

We went to Lidia’s later that afternoon to celebrate. Angel grilled. Mami made black beans. I handled dessert. It was a pretty good evening until Joshua decided that it was time to leave. We did leave after his normal bedtime, so his fussiness wasn’t unexpected. We got him home, bathed him, and he went down without a problem.

Related posts:

1. Why Joshua?
2. Early Christmas
3. Build-A-Moment

Friday was the worst. Joel and I went to Miami in order to see my oral surgeon. Our appointment was for 2:30PM and we weren’t even called to the back until after 5PM. We just sat and waited and waited and waited. We ran out of things to do to pass the time. I read three magazines, wrote in my notebook, checked my email on my phone, surfed on my phone, watched some news on the TV they had running… We usually have to wait – an hour or so, but three hours is a bit much. Then, we had to wait in the back. Finally, we saw my oral surgeon and honestly, it wasn’t a very long visit because I’m good.  Good news is that I’m done having PET/CT scans for my first cancer. I believe I stated in a previous post that I canceled this year’s after my oncologist told me not to get it, saying that my body’s been through enough and does not need more radiation. My oral surgeon did have me make an appointment to see him for a follow-up in a year, but we’ll see when the time comes. Most likely, he’s just going to want to talk about reconstruction. We’ve discussed it several times in the past, but right now, that’s not even “on the table.” Surgery is not something I should be undergoing during my recovery; it would just set me back; plus, I would definitely need a higher platelet count. Besides, my mouth piece is working just fine at the moment. So, we didn’t get to leave Miami until around 6PM – rush hour time. It was not pretty, but fortunately, it was much better once we got on the Turnpike. By the time we got back to West Palm, we were hungry, tired, cranky, and it was late. We were supposed to go to a cancer celebration for all the Christ Fellowship cancer groups. They made it sound like fun and fellowship, but we didn’t go. It was just so late. I emailed those in charge to apologize; I had RSVPed and made cookies for the event. I have to say I’m still bummed I wasn’t able to go, but I received very nice return emails telling me not to fret and that God put me exactly where I needed to be. So I guess that’s it.

Thankfully, this upcoming week looks pretty good. I’m finally done with catching up on doctor’s appointments. Now, it’s my oncologist, physical therapy, and once a month at Moffitt. May be that still seems like a lot, but it’s a relief after playing “catch up” with my OB-GYN, primary, oral surgeon, scans, tests, etc. I can just focus on my main day-to-day recovery, and perhaps, I will finally get a real routine going. I feel it coming…

Hugs to everyone!

Related posts:

1. Information Update
2. Finally the Week Is Over…
3. St. Patty’s Day = Release Day (Love the Luck of the Irish)

I went on-line last week and found several cool buttons; I just couldn’t help myself. They arrived in the mail this week, and I added several to my purse.

On the left, several women in my cancer support group commented about how they love the button that says “Retail Therapy Beats Chemotherapy.” For me, it’s too true. I have enjoyed being able to go out to stores since my BMT doctor said I could. I didn’t even care back then that I had to wear a mask out. Now, I don’t have to, but I always carry one with me just in case. The “Never place a period where God has placed a comma” button reminds me of how God is in control, and even though there are times when I want to fight for control, ultimately He is undoubtedly the one who rules over my life.

On the right side is my “Cancer Sucks” button that I bought in the Moffitt gift shop ages ago. I also have a funny button about germs and a truthful one about attitude.

Thinking about myself, I think I cared too much about what other people thought, and thus, I supressed doing things – even if it would make me smile. In the past, having the buttons so prominently displayed on my purse (something I take everywhere) might have made me self-conscious. I’ve been through too much to live that way anymore, so I say again “I love my flare.” Maybe it is a little childish, but why not? I think several of my buttons are inspirational; others are just funny, but overall, they are there to bring joy – and what more could you want?

I can’t fit all my “flare” on my purse without my purse becoming crowded. I think I’ll rotate. On the left are more buttons with sayings. On the right are mostly my holiday buttons, and I’ve had most of these for years.

My message? Do what makes you happy (as long as you’re not hurting someone else).

Wear Flare!

Related posts:

1. No Hair Fashion Show
2. +4 + More
3. Quirky Me

Joel put the photos together in a collection that tell our story.  I would definitely recommend viewing it.

http://www.flickr.com/photos/24856421@N00/sets/72157623940338340/

Let us know what you think.

Related posts:

1. Information Update
2. +5 and counting
3. This Week in Review

My oncologist also does not think I should go on Fosamax (osteoporosis medication). He says that the calcium I’m taking should be enough for now because the bone density test only showed me to be slightly over (1.1 when 1.0 is normal). It’s overkill and early. He said that it would make more sense to take it a few years down the line when I’m on fewer drugs and after having other bone density tests to compare to the first one. He told me that Fosamax is a pain of a drug to take. You can’t eat; you have to sit up or stand for at least an hour afterwards, and apparently only 2% of the drug is absorbed by the body; thus, it would be difficult to take with all of my other drugs and it wouldn’t necessarily give me much benefit. Interestingly, he gave the same impression about the Gleevac I’m taking. He thinks that since I’m on such a low dose that it may basically be doing little more than a placebo. He’s going to check the levels in the blood soon to see if that’s the case, and I get the feeling if it’s doing nothing, he’s going to take me off of it.

My oncologist also decided that I don’t need to come in for blood work every week; he thinks every 2 weeks is enough. This is awesome because now I’ll have fewer appointments, and a little more freedom. In fact, today I drove my car by myself and went to CVS to pick up my prescriptions. I felt very independent. Tomorrow, I’m going to take some food to my niece before taking Jake to his speech therapy session, and mom’s going to stay home with Josh because he’s having OT tomorrow instead of Friday. I will eventually have to take Jacob by myself anyway, but I was surprised when mom suggested it; it didn’t think she’d let me. I’m glad to see that she’s really starting to let go. We both need to return to our lives, and try to find a “new normal.”

For all of you who continue to follow my journey, let me thank you for your continued support. I appreciate it more than you can know.

Related posts:

1. Almost Too Much Information and Events
2. St. Patty’s Day = Release Day (Love the Luck of the Irish)
3. It’s Wednesday Again

Wednesday

I made tons of phone calls, and got some good test results. My mammogram, and ultrasound came back clear. My ovaries are intact and it does not appear that I’m going through early menopause. Apparently, my lack of the female monthly visit is most likely due to my cocktail of drugs, especially the prednisone (steroid), which may be suppressing me. Prednisone is really odd. I’m told I have to have it, yet it causes plenty of issues as well. Drugs are weird in the sense that they’re both good and bad for you.

With my good test results, came some bad ones as well. However, they weren’t my results. Wednesday evening, Joel noticed a change in Tigger’s behavior (our cat). He was acting lethargic and slow; then upon closer examination, he noticed that Tigger looked severely bloated. Joel called me over to look as well and Tigger’s sides were definitely large and sticking out. Our thought was that his urinary track was blocked again. That’s what happened to him in June practically days after I ended up in the hospital with my cancer diagnosis.  He had to have emergency surgery and was in the hospital for a week, costing us a small fortune.  Being realistic, our main concern this time around was Tigger’s comfort and that he not be in pain even if that meant putting him to sleep. We did not want him to suffer through the night, so Joel called our vet. Getting to the point, our vet told us to take him to an emergency clinic. I petted Tigger and basically said good-bye prior to Joel taking him, and I’m glad I did because he didn’t come back. Skipping the details and Joel’s wait,  an x-ray showed masses in his liver and pancreas, and possibly the lungs. Although we didn’t have it 100% confirmed with blood tests, the vet said the results appeared consistent with cancer, possibly lymphoma and at its advanced stage, there was really very little that could have been done.  It was a shock, especially for Joel who was ready to put our beloved 12 year old cat to sleep, but certainly not prepared to hear that he needed to be euthanized due to cancer. It was an emotional night. We lost Whiskers not that long ago and now Tigger. We still have Oslo and he’s a great cat, especially with the boys. I mean Josh has even grabbed his whiskers, pulled hard, and Oslo just sits there and stares lovingly.  As for Joel and I we can’t help but be sad because the cats we’ve had for pretty much our entire relationship have now both passed on. With this happening Wednesday night, I really didn’t want to have to leave the next morning for Tampa, but I had little choice.

Thursday

Mom and I left in the morning for our 4 hour trip to Moffitt in Tampa. We were expecting an uneventful trip as this was merely my first monthly visit back and I’ve been doing fine so far. The drive is so dull with nothing to look at, but we made it there safely. We had lunch and went to our favorite used book store, Mojos. The rest of the day was uneventful since my appointment wasn’t until Friday at 9:30AM.

Friday

Arriving in Tampa was more emotionally difficult than I thought it would be. Seeing the familiar buildings and roads in Tampa brought back a flood of memories, and unfortunately, I can’t say they’re exactly good. Friday was the hardest as we pulled up to the hospital. Walking into Moffitt, I grew quiet watching patients in wheelchairs, wearing masks, and looking sick. I really didn’t want to be there. I think it was easier when I living in Tampa; the hospital was routine. Friday was just not the same.

As we entered the BMT clinic, we saw the familiar face of a patient we hadn’t seen in ages.  She had been on the BMT floor at same time as me. We didn’t know what had happened to her because we hadn’t seen her for weeks before I left in mid-March. Mom talked to her while I checked in. She was called shortly thereafter and a few minutes later her husband, showed up. Apparently, she had called him to let him know that we were in the clinic so he came to see us. It turns out that they were worried that something had happened to me. Mom talked to him and we learned that they still didn’t know when they would get to leave Moffitt. Crazy. His wife had her transplant in October. The reason she was on the floor at the same time as me was because she got sick and had to be readmitted to the hospital. She eventually got to leave the floor about the week or two before I did, but then ended up back a couple of weeks later. She’s doing better than before, but she’s having some issues that her doctors are still trying to understand. Her husband said they have to come to the hospital every day for infusions and/or transfusions, including weekends. Mom said that he looked like he’s at his wits end; one can’t help but feel bad.

News got even worse when mom asked whether he had heard any news about the other people who were on our floor. He revealed that another patient had died and I found myself deeply affected.  The 22 year old college student, the youngest on our floor, passed away some time between my departure and return. His mother was literally the last familiar person we saw before leaving Moffitt. She explained that her son had some sort of respiratory infection that the doctor’s hadn’t yet been able to figure out. He died due to some kind of head issue – cranial pressure or something – perhaps a tumor.

Why was I so affected? He and I both arrived on the floor the same day. We were both the youngest people on the floor. We both had our transplants at the same time, and we both received cells from German donors. He was so young with his whole life ahead of him.  We didn’t have the same cancer. Tyler had non-Hodgkins lymphoma. He also didn’t listen well – not always doing what the doctors said, not walking much, not really taking care of himself like he should have. He’s also the once who cut his Hickman line (chest IV), which is incredibly dangerous in terms of possible infection. I’m just bummed by the news and can’t help but feel guilty. Now, out of approximately 12 patients on my floor, 5 have passed. That’s more than the 1 out of 4 – 25% transplant mortality statistic. Scary.

When I finally had my appointment. My PA examined my finger nails because they’ve been really brittle lately, breaking super easy. Plus, they have a bump/wave-like texture going on. The PA says that it’s the chemo coming out and that with time my nails will grow back normal so no worries. I also told  him about how I’m bruising easily. I’m a black and blue mess. Mom jokes that the authorities will come get her on charges of adult abuse. The PA explained that the drugs – especially prednisone (what a shock) – causes the skin to thin and vessels to become sensitive, making them easy to bruise.  We also talked about the importance of sunscreen and being careful outdoors. If I’m outside, protective clothing like a floppy hat in conjunction with sunscreen is a must. I learned that generally sunscreen protection fades after about 2 hours and should be reapplied at that time regardless of what the sunscreen instructions state. I also learned that getting a sunburn is the last thing I ever want to get because for me I would really be in a lot of pain. The PA explained that the immune system is responsible for repairing damaged skin cells and since my new immune system is still getting acclimated to my body, a sunburn could cause the donor cells to go “overboard” trying to repair the burn resulting in effects similar to sun poisoning.

When we finally got to see my doctor, I learned my last bone marrow biopsy test results were good. My bone marrow remains 100% donor and my blood is now 95% donor.  My blood level was at 93% donor at my last biopsy, and my doctor said that 95 is pretty much 100% because the values are measured in ranges and the range is 95-100. She also told us that they normally give patients a year to reach these numbers and it’s excellent news that I’ve achieved them during my first 3 months post transplant – a very good sign.   Also, as with my last biopsy, there are still no signs of the Philadelphia chromosome, which was basically the reason why I had to have the transplant in the first place. The doctor showed us the line in the results paperwork that states that there is no evidence – both major and minor – of the chromosome. This is still excellent news because even after going into remission, it was the Philly chromosome that placed me at high risk for relaspe.

My transplant doctor made very few changes to my drugs. Basically since I’m doing well, she doesn’t want to mess with my cocktail. Drugs are one of those unpredictable things since different individuals can react differently; thus, my doctor is not going to fix what isn’t broken even though I would love to take fewer pills. She did lower my prednisone a tiny bit (YAY!)  from 10 to 7.5. She also gave me a prescription for a drug called Fosamax. She wants me to take it because my bone density test showed the signs of slight osteoporosis in my left hip. I have to take the drug once a week and I can’t lie down afterward because it can cause some nasty heartburn. Before I start, though, she wanted me to call my OB and make sure she’s okay with it because as my “female doctor,” she should be the one to monitor my usage.

The doctor also said she wanted me to see my primary care physician. My blood results show that both my good and bad cholestorol are on target but she said that my primary might want to do something about my triglycerides because they’re a bit high. She didn’t prescribe anything, thinking it unnecessary; however, she admitted that my primary might see things differently.

After finishing at Moffitt, we had lunch and hit the road. We got home safely, and it was great to return. I don’t have to go back until May 21st. I’m not sure if it will be mom or Joel who takes me; it’ll depend on when mom goes home.   Next Friday I have an appointment in Miami to have my annual PET/CT scan that I missed last year and then I meet with my oral surgeon on the following Friday for my annual checkup, which I also missed last year.  Those appointments are follow-ups from my oral cancer 5 years ago. Please pray they go well.

That’s all for now. Thank you for all the prayers. My news was good; my health is pretty good; and as long as this continues, I’m good

Related posts:

1. Information Update
2. It’s Wednesday Again
3. This Week in Review

So far this week, I’m still working on finding a routine, a schedule, and becoming more independent of mom. I think in a week I’ll have my schedule set. It looks like I’ll have something going on EVERY day – if it’s not me, it’s an appointment for the boys. Mondays and Thursdays look like they’re going to be my PT days. Tuesday is my oncologist day. Jacob is now slated to have speech therapy on Wednesdays. Right now, Josh has OT on Fridays, and we’re going to add PT as well; I’m just waiting for the woman who will do it to call me back so we can schedule a time – when? Who  knows? Busy, busy, but I think it’s good in the sense that it will establish a routine and that’s really something I’ve missed since returning home. A schedule and routine will allow me to know what to expect – although the  limitation can be annoying at time, especially since I don’t seem to have even one day off. As for independence, I’m driving more, cooking, making lunches, organizing… I still need to drive more but my confidence is there. I need do some laundry. Probably the more difficult task is Joshua. I can only change diapers wearing a mask and gloves, which I haven’t done yet because it’s preferred that I don’t do it at all (not that I’m complaining). Joshua is also exhausting; cute, cute, cute and much better about entertaining himself but still tiring. Fatigue is not as big of a problem as it once was, but it is not gone. Sometimes I do need a nap and I seem to suffer from allergy issues (which really didn’t used to be problem). Sinus headaches are the worst. Pain behind the eyes and I really can’t function. I had one Sunday and I pretty much spent the day in the bedroom relaxing – really not too bad, especially once the pain started to subside.

Today, we kept Josh home because he’s scheduled for  his next picture session. I’m hoping I picked a good time and that he’ll smile and look adorable – but kids are unpredictable!

I’M BACK… Josh was pretty good. I couldn’t have done it without mom’s help. Squatting is not something I can really do well yet. I think we got some cute pictures and Josh stayed calm most of the time. The difficult part was getting him to smile; he was so serious! We go back next Thursday to look at and order the photos we want.

PRAYER: I would like to ask those who read my blog to pray for our friends Elli and Manny. Manny is currently undergoing his 7th round of chemo. We pray that his side effects are minimal and that his recovery is speedy.

Related posts:

1. Jamie Undergoing Treatment this Week
2. A Week of a Different Color
3. Busy Week

We also decorated his room with the crafts that we’ve done. Last weekend it was Melty Beads (Jacob prefers a rainbow pattern) and sand art.

Today I cleaned out Jacob’s room, going through and organizing his toys in his closet, boxes, and bins. I feel I did an amazing job and that his room looks awesome. I separated his stuff and part like things together, so at least for now, we can find anything!

I love it.

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1. Completed Homemade Door Signs
2. Jake’s New Crush
3. Now It’s Tuesday