The Q Family Blog » Leukemia

Tampa in a Day!

Jamie — Sat, 22 May 2010 02:00:50 +0000

I had my second monthly visit back at Moffitt and I’m amazed that Joel and I did it all in one day. We left at about 7:15AM and arrived around 10:15AM. I still don’t know how Joel did the trip in 3 (not 4) hours. He says that he’s “the man” but I’m thinking he’s a “speed-demon.” My check-in time wasn’t until 11:30AM, so we went to Mojo’s – the used bookstore that mom and I discovered while living in Tampa. Then, we went to Moffitt. It was all new for Joel. Hard to believe, but he’s never been there. It’s always been me and mom. We were still early, so we went to the pharmacy so I could pick up my nasty, oily liquid that I still need to get at Moffitt because my BMT doctor told me that it would be really difficult to get outside the hospital because it’s a mixture. After that, check in, labs, and a bandage change. I got a big hug 2x from the lab tech that I would see pretty much every other day when I was an outpatient. Joel and I then had a little time to go and grab a quick bite at the cafeteria. Our doctor appointment was at 1PM and we got called back pretty close to that time. We also didn’t wait long before we saw the PA and my BMT doctor afterwards. My labs were similar to the last month’s, so the doctor was happy. She decreased my meds, which made me happy. She discontinued my neurotin (which I really don’t think I’ve needed for months); then she lowered my magnesium from 12 pills a day to 9 (so awesome!), and finally she lower my prednisone (steriod) to 5mg from 7.5. Things went by relatively quickly and smoothly. After checking out and making next month’s appointment, we were back in the car and heading home a little after 2PM. I think Joel and I were back home with some Chinese take-out by 5:30PM. The timing still really surprises me and I almost can’t believe we were in Tampa today.

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!

This Week in Review

Jamie — Tue, 11 May 2010 02:36:21 +0000

This was another busy week of appointments. I had physical therapy on Monday and Thursday. On Tuesday, I attended the cancer support group meeting for the second month in a row at the Christ Fellowship Royal Palm campus. On Wed., I saw my primary doctor. She said I looked good. I talked to her about temporary menopause. I had looked it up prior and it’s pretty much what it says. For me, it could be caused by chemo, the BMT, and all the medications I’m on. The reason I wanted to talk about it with my primary is due to the fact that last week I had my first “hot flash.” At first, I didn’t know what it was. I just felt hot for 30 seconds or less. Then, I was having that same feeling every evening at least once. In fact, I was at dinner one night last week and mom said my face looked flushed and my ears were red. I read about hot flashes and that seems to be what I’m experiencing. However, it’s’ not a bother. It’s short-lived, and I’ve been through SO much worse. Basically, my primary doctor said we should just wait and see. She agreed with my oncologist that it is unnecessary to put me on anything else right now. Like him, she sees me going on some drugs in future years – hormones and possibly the Fosamex. As for my blood work, I need to watch my intake of carbs because it makes my pancreas work harder and makes sugars. My blood sugar and triglycerides are on a high side, and she wants me to just watch myself so I don’t end up with diabetes. Not to worry at this point. She doesn’t want me to change my diet; I just need to avoid sitting and eating giant pasta bowls or big cups of fruit, etc. I’m not concerned, but I’ll be diligent.

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!

Survivor Portraits

Jamie — Thu, 29 Apr 2010 04:30:46 +0000

Photography has become a hobby for Joel, and he’s really gotten into it. I’m not talking about taking some pictures; I’m talking different lenses and lighting and framing and other stuff I know nothing about. Joel does a lot of nature and scenery photographs, but he had this idea to do a portrait session with me. It took weeks to get everything together: lighting, a black backdrop, the right lens, a red drape… We did the session Sunday night. It was a little torturous. The lighting was hot; the wooden floor was hard; Joel had issues, and I felt that I really looked big/fat. However, in the end, I think Joel selected some really tasteful photographs that reflect this point in time. I have survived, but I’m still recovering and my appearance reflects this fact.

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.

Information Update

Jamie — Wed, 28 Apr 2010 02:07:50 +0000

Today I saw my oncologist, and I think it was a good visit. At the very least, I liked what he had to say. He thinks that my BMT doctor is micromanaging me and going into overkill with certain things. First, he does not think I should have the PET/CT follow-up for my previous oral cancer. He said that a physical examination should be more than sufficient, and that my body has already been through enough. The radiation from a PET is really high and I simply do not need that kind of exposure. I was going to have the test this Friday, but now I’m not. I can’t say I’m sad about it; I never looked forward to the IV, scary radioactive fluid in the lead box and syringe, or the long scan. I am, however, keeping my appointment to see my oral surgeon a week from this Friday. I called and left a message about what my oncologist said; hopefully, my they will understand.

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.

Almost Too Much Information and Events

Jamie — Sat, 24 Apr 2010 14:33:32 +0000

I’m not really sure where to start because there’s so much since that has happened since I blogged on Tuesday. I guess I’ll just start and see where it leads. Hopefully, I’ll make sense and not go off on too many tangents.

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

A Different Week

Jamie — Wed, 21 Apr 2010 02:57:53 +0000

This week is a bit different. Friday is my doctor day versus Tuesday because it’s time for my first monthly visit back in Tampa at Moffitt. We’re leaving Thursday and my appointments start at 9AM on Friday. Scheduled are lab work and a meeting with my BMT doctor. I expect a pretty uneventful visit – at least that’s the goal. I’ll post the results once we return.

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.

Busy Week

Jamie — Tue, 13 Apr 2010 23:56:55 +0000

This is a super busy week for appointments. Yesterday (Monday) I had an ultrasound ordered by my OB just to make sure that my ovaries are okay. There’s a question as to whether or not I might go into early menopause. Then, I had my first PT here. It’s been weeks so even though a lot of what we did was evaluation, the exercises I did do are killing me today. The front of my thighs are super ouchy even to the touch! Hopefully, by tomorrow, it’ll be better. I did a lot of walking today and that helped until I stopped or went to sit down.

FUN FACT: Joshua’s Occupational Therapist and my Physical Therapist lady are both named Julie.

Today was the normal Tuesday blood work and bandage change. My levels are either the same or slightly higher. No drops so that’s good.

Tomorrow, I take Jacob to a speech therapist to be evaluated. He has pronounciation problems and Joel and I swear that he sounds like someone from Boston.

Thursday, I have PT again after a morning mammogram. Then, on Friday Joshua has OT. Oh, and Gabriel’s celebrating his 2nd birthday on Saturday.

Whew!

Mom and I go back to Moffitt next week. Our appointment is on Friday, April 23rd in the morning so we’re going to go up Thursday and come back on Friday after the labs and appointment with my BMT doctor.

I’ll pretty happy today because last night I had a horrible headache and ended up going to bed early. I’m always happy to be pain free – although I wish my thighs would stop hurting. Ouch, my muscles.

Keep the prayers coming and add our friends Elli and Manny to your list. Manny was unable to start his round 7 of chemo due to borderline counts. Hopefully, he’ll be where he needs to be next Monday. In the meantime, he needs to rest and enjoy his 30th birthday this week.

G is for…

Jamie — Thu, 08 Apr 2010 02:08:08 +0000

G is for the cancer support Group I attended at Christ Fellowship’s Royal Palm Beach campus last night. I plan to go back next month; I found the group to be positive and very nice. There was at least 15 people there. Most were survivors; some were currently going through treatment, and a couple were caregivers. For me, the sharing of stories was the best part. Since I was the newbie, my story was the longest since no one knew anything about me, but everyone really listened and seemed to genuinely care. And again, they were positive and talked about the benefits to being positive – something I’ve really tried to emulate. No one shared the same story as me, as usual, but there were a few throat, neck, and lung patients who connected with my first cancer. Their experiences reminded me of my surgery and radiation in 2005. In fact, many had/have the same radiation oncologist. No one had ALL or leukemia. Most of the women had or have breast cancer. I was also probably the youngest one there, which Joel says is one of our most difficult issues personally because it’s so hard to find anyone to talk to about our experiences. This is one of the main reasons I wanted to go. I feel called to share – my experiences, information, knowledge… interestingly, one of the co-coordinators introduced something he felt called to do at this particular meeting. He wants to start a team where volunteers from the group will be paired with a new member to the group based on gender and type of cancer; this is the type of thing I wanted to do. I want to help at least one person.

What remains with me in my heart today may have nothing to do with cancer. There was a couple where the wife is a 3 year survivor of ovarian cancer, but that’s not their current concern. Their concern is for their youngest daughter who has been suffering from debilitating headaches that cause her to faint. She’s only 14, in 9th grade, and so far, the only thing the doctors seem to agree on is that she is having bad migraines. The parents are beside themselves. The daughter hasn’t been able to go to school for a month and a half. The two neurologists they’ve seen are polar opposites with one wanting to drug her up and the other wanting to give her nothing. The parents haven’t been able to find a middle ground or some agreement. Your heart can’t help but go out to them. The mother kept tearing up and is so frustrated. She calls and calls. They’ve gone to Miami. They just want to know how to help their daughter, but all the tests so far have shown nothing. Shortly before writing this, I contacted one of the group’s co-coordinators in the hope of being able to reach this couple. The husband told me that the daughter currently has an incomplete as her 3rd quarter grade from her English teacher and I wanted to see if I could somehow help – possibly by tutoring or via strategies or whatever. Hopefully, I’ll get a return email tomorrow.

G is also for my visit today to my OB-GYN. My doctor was extremely happy to see me. She was always incredibly sweet and caring to me during the part of my ordeal when I was pregnant with Joshua, and she’s still the same wonderful lady. I had a fun (sarcasm) papsmear and asked her my questions. First, I needed to know if I could possibly experience early menopause. Why? Well, not to go into too much detail, but my periods have really been off and I haven’t had anything since February. I also told her that my oncologist was surprised I have had any kind of period; he literally said, “You’re ovaries still work?” In response, my OB-GYN said that with all that I’ve been through, this could all just be normal but just in case, I’m going to have an ultrasound on Monday. She said I could have a hormonal test but that the results would not necessarily be accurate, so we decided against it at this time. I also asked for a script so that I can get my mammogram done because I didn’t exactly get it done like I normally do before school starts in August, so I have to call to make that appointment. Lastly, my oncologist said I can go off of my Prozac. Mom doesn’t want me to, so I asked my OB. She asked why my oncologist wanted to take me off it, and I told her he stated that he felt the Prozac was to help me through my baby blues, which he believes is now over so the drug’s job is done. My OB said that the baby blues can last as long as a year so I could still have it, but she also said that with my mom here, now is the best time to stop the drug and see what happens. If I feel any negative feelings or depression, I should immediately go back on it and if I don’t notice any mood changes, my mom should. Plus, my OB said that if I go off successfully, mom will feel better leaving – whether she realizes it or not right now.

My heartfelt thanks go out to all of you who continue to read this blog and pray for me and my family. God bless.

Cancer Tuesday

Jamie — Tue, 06 Apr 2010 20:49:04 +0000

I know the title’s a bit abrupt. It will probably jolt Joel; I know he doesn’t like the “C” word. I usually say I was sick or ill, but today is a cancer-based day for me. I have labs this morning and I’m going to a cancer group at the Christ Fellowship Royal Palm location for the first time tonight. I’m a tad nervous since it’s my first time ; I don’t know what to expect, but the two members I’ve talked to have been very nice. I’m going more to see if I can help others, which will hopefully help me in return. In Tampa, I really felt the need to do something. With my previous cancer, I think I focused on trying to go on and put it behind me. I know it’s what Joel really wanted to do, and I completely understand the sentiment. This time I don’t want to do that. I’ve been through so much and I’ve learned so much that there’s a desire, a need to share with others who don’t know what they’re facing or don’t know if what’s happening is “normal.” I had a lot of questions and really no one to talk to. Much like my last cancer, I always seemed to be further along than the people I talked to and/or befriended. Plus, going on-line is NOT a good idea. Mom and Joel read up on ALL and I only read one paragraph on-line during my whole ordeal. Why? Well, after one paragraph, I was basically dead, so I was done with that. The information on-line is worst case and dark and not completely accurate. For instance, my bone marrow transplant was nothing like what it said it would be on-line. I just had a bag of stem cells from my donor transferred through my Hickman similar to a blood or platelet transfusion. It was basically painless and quick in my case – although I did vomit but that was probably more from nerves. On-line the BMT is described as a frightening experience where 10 needles are placed in the patient’s bone in various places on the body in order to receive the stem cells. This also happens to the donor prior to the transplant. However, this is what happens if you are a child whose bones have yet to mature. My donor had to receive shots to increase his white blood cell production and then he went through something similar to dialysis. He gave blood that was filtered and then what wasn’t needed was returned to him. It’s not the most comfortable, but it’s closer to donating blood than having 10 needles stuck in you. So, my point is that information on-line is not necessarily valid. Do you know where I read that paragraph? The American Cancer Society. It wasn’t Joe Bob’s Cancer Extravaganza page, but a reputable location. This is part of the reason why I blog. It’s the honest truth and if someone wants to really read about the experience, he or she can. In fact, a caretaker of a Moffitt patient currently in the hospital found my blog and has been “stalking” me as she put it – not really. However, she finally decided to contact me directly and I told them to ask me anything and email me anytime.

The oncologist’s office was extremely busy since my doctor was out on vacation last week. We ended up sitting around for a while, but in the end, the visit was uneventful, which is a good thing. My blood counts are about the same as last week. My white blood cells and platelets are up a little and my hemoglobin is down a little. I’m still not in the “normal” range but I’ll eventually get there. It will just take time – may be a lot of time – we’ll see.

Tonight, as I said before, I’m going to the cancer support group at Christ Fellowship, so I’ll post anything interesting and/or the highlights tonight or tomorrow.

Thank you to those who continue to pray for my health and for my family. I may be home, but I’m still far from done so your prayers are appreciated.

Now It’s Tuesday

Jamie — Tue, 30 Mar 2010 21:26:35 +0000

Now that I’m home, Tuesday will be my medical update day instead of Wed. when I was at Moffitt. I have little to report. I didn’t see my oncologist; he’s visiting family up North for Passover. My blood work is pretty much constant. I’m certainly not in the normal range for much yet, but my counts are decent. Platelets are holding in the 70s; hemoglobin is a little above 10, and my white blood cells are over 3. There’s still a good way to go, but as long as there are no major drops, all is well. I did tell the nurse that my fingernails have become very brittle, breaking off and pealing. She recorded it, but the thinking is that it’s the drugs. Mom read this weekend that fingernail changes could be a symptom of GVH so we wanted to at least make them aware.

I also had my first dentist cleaning in ages. I had to take 4 amoxicillin pills an hour beforehand, which seems to be normal because my dentist was totally aware of that necessity. My teeth feel clean! I did well and the staff plus my dentist are just wonderful people. They really do care, and thanked me for writing to them while I was in Tampa. My dentist said my teeth look great and the hygienist said my gums look pink and healthy. It may not sound like much, but they both said that normally after what I’ve been through (chemo/BMT) the mouth shows wear, especially the gums. My dentist said from my mouth you wouldn’t know what I’ve been through. Excellent news.

So what have I been doing? Probably too much. Mom keeps telling me to take breaks and rest, so I’m trying to do more of that. It’s definitely making so that I sleep better, so it’s not all bad. I’m cooking dinner for my boys, making their lunches, and trying to help the boys out getting ready in the morning. The really tiring thing I’m doing is organizing the house. I’m almost done with the kitchen. I’m trying to de-clutter the cabinets and purge what we don’t use (donating what I can). I redid the fridge and the pantry too, putting together a food donation. I’m also switching to more glass versus plastic. Glass goes in the dishwasher better than plastic and glass doesn’t hold odors and bacteria like plastic can. I also saw on the news in Tampa that by putting hot (cold is okay) food in plastic, chemicals from the plastic seeps into the food. Yuck. It’s an investment, but should last longer; plus, Target had them on sale. Go bargain shopping!

I also finished going through Joshua’s room today. I’m giving the baby clothes to Lidia for a family in need that just had a baby boy, so that makes my happy. I hate it when perfectly good items go to waste. I think that’s why my nieces and I have been exchanging baby stuff back and forth for the passed few years. However, Amy and I are done so I think we both plan to just get rid of stuff – I mean who has the space? Basically, I’m going room by room, organizing and purging. Sometimes I just stare at the space for minutes on end, trying to envision how I’m going to move things, but I like doing it for the most part. In fact, those who really know me know that I’m an organizational nut.

I wish everyone a blessed Easter. I’m looking forward to the weekend. I have my niece’s baby shower on Sat. and Easter with the family on Sunday, so it’s a family weekend – as it should be. I hope everyone has a wonderful time with their families this special weekend when we believers remember how lucky we are to have Jesus in our lives.