6 Months Post-Transplant

I just celebrated my 6 month post-transplant milestone with a visit to the BMT clinic to see Dr. V. Good news: I didn't have to have a bone marrow biopsy-- just lots of blood work. (Well, that's more like awesome news for just for me.) Better news: Only 3 of the 8 medications I currently take are related to the transplant. I have had almost thirty different medications since transplant. Dr. V has been slowly taking me off the Prograf-- the anti-rejection medication. I am down by 80% now with no evidence of GVHD. Best news: DNA (STR) testing continues to show that greater that 95% of my blood cells are donor cells (Tracy's cells). The lab will never report 100%-- but this is basically saying just that. My old blood cells can no longer be detected. My bone marrow transplant continues to prove successful. A TRUE MIRACLE!

Clinic Visits- April 17, 2008 and May 1, 2008

I have had two clinic visits since I last posted. A lot can change in just two visits!

Thursday, April 17, 2008

My friend, Michelle, accompanied me on Thursday, April 17. Michelle is a great friend (and I am so blessed so have so many of them) and she is always so practical and pragmatic that she won’t let me worry about the “what ifs”. (Thanks, Michelle)

I can’t tell you how much I enjoy having company with me during clinic visits. Well, first off, I probably shouldn’t be driving myself because certain medications “may effect” response times (the roads are safer without me behind the wheel). Second, while I’ve been getting great news at almost every visit since February, I still like having the comfort of having someone with me (it’s that one brain cell that runs around my head worrying about the “what ifs”). Third, and most importantly, I love spending time with my friends (many of whom I haven’t been able to visit with because of the crappy cancer thing).

Again, I was fortunate for only one stick for the blood draw. I think being warmer and drinking more water beforehand helps. We got back to an exam room pretty quickly. Maybe time just passed faster chatting with Michelle. Anyway, vitals were good and all my labs looked great. I really need to take a picture of Dr. V’s smile—it’s the best!

I always hate having to mention any unusual symptoms to her because it’s always an “Uh-oh” kind-of thing. Just the night before, I started having a sore throat. I really hate sore throats now because that was the one major symptom I had when I was diagnosed in September. A look with a flash light revealed that I had developed a case of oral thrush. Yeah, I know. Oral thrush (a type of yeast infection).

Three of our four kids developed thrush while nursing. It is not pleasant as a nursing mom either! The kids were always treated with this yucky yellow Nyastatin suspension like 4-5 times a day where I had to use a dropper to wash the insides of their cheeks. I always had to be treated with some topical antifungal medication too. It was always a huge pain to treat because if not 100% treated it just keeps coming back. I feel just plain awful for babies that get oral thrush. It really is unpleasant! Dr. V prescribed oral antifungal tablets, Clotrimazole, to take 5 times a day. The tablets had to dissolve slowly under the tongue (like over 30-40 minutes) and tasted weird.

We’ve probably mentioned before how my immune system isn’t fully functional. Much like an infant, I am susceptible to many common infections that can cause more serious complications. Fortunately, thrush isn’t life threatening but its appearance is a visible sign that I still don’t have a normal functioning immune system. The regime of chemotherapy for a bone marrow transplant had two specific jobs: to wipe out the bone marrow (the source of my cancer) and to destroy (erase) my immune system. The doctors only want to fight one battle: the DONOR cells attacking MY body. The second battle being MY body attacking the DONOR cells that will become the new (cancer free) blood source. Anyways, if you’d really like to learn about your immune system and how it works go to: http://www.howstuffworks.com/immune-system.htm. Sorry for getting side tracked and rambling on about that (but it explains why the recovery from an allogeneic transplant takes so long.) I have to “grow” a new immune system (and even get re-immunized later).

So, back my visit with Dr. V… Dr. V finished the visit with saying “see you in a month!” Whoa! A month?! Wow!

(Oh yeah, I forgot to mention I had a chest x-ray, too. Initial report is clear).

But, alas, a month’s wait was not meant to be. As I’ve mentioned before, I do not tolerate medications in the “–azole” family (anti-fungals). So, taking the fluconazole with the clotrimazole (for the oral thrush) really wiped me out. I really started feeling sick again with nausea. I also started having joint pain in my hands, knees and ankles. So back to the clinic I went.

Thursday, May 1, 2008

Todd was able to go with me to this visit. I have always hated long visits but the longer they end up being is just more time that we can spend together. (And, no, I don’t make up symptoms just so I can be with Todd—it’s just a bonus).

Anyway, labs revealed that I was slightly anemic again (caused by certain medications that suppress RBC production). No problems with the insurance company this time and I got a shot of Arenesp. Dr.V also said that my symptoms aren’t related to GVHD (chronic) which would be reflected in certain lab work and she just didn’t see it. We went through my list of medications and my complaints. She decided that any benefit from several medications that often cause these side effects weren’t worth it. The result is I no longer have to take Lipitor (high cholesterol), Norsvasc (hyper-tension), Clotrimazole (thrush—which had cleared up), Fluconazole (prophylactic anti-fungal and Prograf stabilizer) and Entocort (GI steroid). Whoa! The hope is that a lot of my crummy symptoms will subside and she’ll start weaning the Prograf dose. Right now, getting off the steroid and reducing the Prograf is really important.

I’ll be back in clinic in two weeks. Hopefully, with more good news!

D + 38 – Home Again

When Tuesday’s clinic visit came, we figured it would be a relatively short visit. That turned into what we thought would be an overnight stay at the hospital so they could run a couple of tests the next day. Then one night turned into two which quickly became three. Finally, after four nights in the hospital, Courtney is back in her own bed.

This was a long week made longer with uncertainty. Each day brought with it more questions that seemed to take forever to get answered. When is the EGD? When do we get results? Can Courtney go home? What’s causing the nausea? Will there be more tests? Can Courtney go home tomorrow? Is that a new medication? What are we waiting for? When can we talk to a doctor? Why are we here?

Eventually most of the questions were answered, and Courtney’s condition slowly improved. Her blood counts took a turn for the better. The pain she had been feeling just below her ribs subsided. And, the nausea, that had been so persistently bothering her for the past week, finally relented today.

Here’s a quick recap of what transpired since Wednesday:

Thursday – Courtney finally underwent the EGD (For those of you wonder how to pronounce “Esophagogastroduodenoscopy”, here’s the pronunciation - ĕ-sof′ă-gō-gas′trō-dū′ō-den-os′kŏ-pē). Other than the fact that Courtney’s resistance to Versed caused her to fight the nurses as they forced the scope down her throat, the procedure went well. The doctor’s report actually includes the statement, “After adequate conscious sedation was achieved, the patient was intubated and the scope advanced under direct visualization to the third part of duodenum.” I’m not sure how they define “adequate.” I suppose they thought Courtney wouldn’t remember it. I think that’s usually the case with the “conscious sedation.” Anyway, they got the information they were looking for, and in the process took some nice pictures of Courtney’s innards. (Not many people can say they’ve seen their duodenum.) The verdict – Courtney has gastric paresis and acute gastritis. Given the recent chemotherapy and all the meds she’s been taken, neither of these was a surprise. In the process, they took a couple of biopsies. These results won’t be back for a few days.

After the procedure, Dr. V. started Courtney on the steroid Prednisone. This is used to counteract the GVHD, if any, and hopefully help her feel much better. Unfortunately, it has the unpleasant side effect of causing restlessness, and Courtney didn’t sleep well Thursday night.

Friday – First official day to be off the Foscarnet. Thank goodness. Hopefully she won’t have to revisit this drug. And hopefully we see her condition steadily improve. Basically Friday was spent weaning Courtney off of the IV meds they had been giving her since Tuesday. By “weaning” I mean switching to an oral form. They want to make sure she keeps them all down before sending her home. Right now, their biggest concern is that she consistently gets her antibiotics and Prograff (anti-GVHD drug). They really don’t want these to come back up or for her not to take them because she feels too nauseous. So, one more night in the hospital. And it was NOT a fun night.

The night was long because she had a bad reaction to another drug. Add Meclizine to the list. Dr. V. decided to try it to help her nausea since the scopalomine patch didn't seem to be helping that much. She took her first dose yesterday afternoon without problems. However, her second dose, given around midnight last night, made her react much the same way compazine did back in October. Skin crawling, muscle twitching, painful, irritating, etc. Unfortunately, the nurse had to page the doctor to get permission to give her benedryl. So, it took a little while to get and took a while longer for it to work. Since that was the only new medication given, and since it's kinda in the same family as compazine, we were fairly confident that meclizine was the culprit. So, we told her nurse to skip the next dose, due at 6:00 AM, until we could discuss it with Dr. V. Well, at 6:00 AM the nurse came in, nudged Courtney awake just enough so she could take it. Courtney, having only been asleep for barely three hours, took it without really knowing what it was. And, sure enough within an hour, was feeling the effects again. Fortunately, Dr. V was at the hospital by then, and Courtney was able to quickly get the benedryl and dilodid via IV. That helped alleviate the side effects much faster than last night. So, no more meclizine.

Dr. V gave Courtney the go ahead to go home if she felt up to it. After sleeping for a few more hours, she was feeling much better and very much wanted to go home and see the kids again. So we packed up and headed home. Now, after a good evening of spending some time with the kids, eating a couple of small meals without getting nauseous, she’s sleeping soundly in her own bed once again. Quite the contrast to last night.

One more thing. Dr. V came in yesterday evening and told us the genetic tests came back. The report states that her cells were >95% donor (Tracy) cells!! >95% is the highest it can be reported. And Dr. V said basically it's 100%. She also said, "No recipient (Courtney) DNA detected." Which means no leukemia, and less likely that it'll reappear!! Very good and happy news. Courtney couldn't wait to call Tracy, but when we did get her on the phone, Court was too emotional to talk.

It's nice having good news once again. These happy milestones help soooo much, especially after a very long and crummy week.

D+17 - Almost home

Christmas Eve and Christmas night were finally fever free nights, and on the 26th, Courtney was feeling so well that the doctors actually told her she could probably go home on Friday, December 28th. Needless to say, that didn’t happen. Here it is Saturday night and she’s still here in the hospital.

Early Wednesday morning Courtney’s fevers came back. Though the fevers didn’t spike as high as before, they lasted about 48 hours and delayed her discharge. The doctors wanted her fever free for at least 48 hours before sending her home. In the meantime they ran more tests to try to determine the source of her fever and rule out an infection of any kind. As of now all tests have come back negative and her fevers have since subsided and we still don’t know what was causing them.

The only reason Courtney is still in the hospital now is because of something that crept up earlier this week. Prior to the transplant Courtney tested positive for having “been exposed” to cytomegalovirus (CMV). Apparently this is a fact held true by about 80% of the adult population. This virus lays dormant in most people until their immune system is suppressed for whatever reason. Without treatment in can be life threatening, which is why the test for it in the first place. After the transplant they check her blood every 72 hours to see if the CMV is reactivating. Their tests can show that the virus is active before it begins to have any effects on the body. So, Courtney’s tests showed that the virus indeed had started to multiply and they began the IV administration of Foscarnet.

The regimen for Foscarnet is infusion of saline for 1 to 2 hours, infusion of Foscarnet for two hours and more saline for 1 to 2 hours. So, it’s about a six hour process and needs to be done twice a day until the CMV tests come back negative. After a negative test they continue to give her Foscarnet once a day until she completes three weeks of receiving the drug. While all of this can be done at home with the help of an IV pump, they wanted to wait until her latest CMV tests came back, hoping they could send her home with a once-a-day dose. This would make managing routine trips to the clinic a lot easier. I’m not sure how well IV pumps and poles travel. It would be cumbersome to say the least.

So, all continues to go relatively well with the transplant. The stems cells have done their thing wonderfully. And Courtney has fought through some crummy side effects valiantly. Fortunately, most of the unpleasantries have subsided including fever, rash, headaches, nausea and painful tingling. She's still fighting through a lack of appetite, some occasional nausea and fatigue. Nevertheless, she's ready to go home, spend time with the children and sleep in her own bed, uninterrupted through the night.

As it stands now, the plan is for Courtney to go home Monday, December 31st. That would be a tremendous moral victory for Courtney – to keep the hospital stays confined to 2007.

D + 9 - Hanging tough

It’s hard to believe that it’s already been nine days since the transplant. And it’s been three months since the diagnosis! They’ve obviously been the three worst months of our lives, and yet we have many great memories that we will one day cherish…when this is all over. Time is an interesting phenomenon – on the one hand is seems to go by excruciatingly slow, but when it’s in the past you wonder where it’s gone.

During the past five days Courtney has been coping with medication, side effects and neurtropenia (lack of white blood cells, specifically neutrophils). The rash finally subsided after about five days and some disagreement with the doctors as to which medication actually caused the rash. This is important to know, as Courtney would like to do everything possible to avoid it in the future. Sometimes, however, it’s difficult to determine which medication is causing which side effect when they give her five or more at a time. And when ALL the medications list many of the same side effects: headache, nausea, fatigue, rash, dizziness, etc.

Besides having to deal with all of the aforementioned side effects during the past week, Courtney has also head to cope with a sore throat, fevers, and painful tingling in her extremities. The biggest concern for the doctors is the fever. Whenever Courtney’s temperature is above 100.7, they take precautions to rule out infection. These precautions include blood culture (checking for yeast or bacteria), chest x-ray (checking for fluid build up) and changing her antibiotics. So far, everything has tested negative (that’s good). Idiopathic fevers during neutropenia are somewhat common and not too threatening. Things become more disconcerting when the doctors can actually find a source of a fever. Still, we’d rather that Courtney not have fevers at all.

So, after a few weeks with relatively few unpleasantries, Courtney is back to facing the ugly side of cancer and treatment. So far, thankfully, things have not gotten nearly as bad as they did during her first round of chemotherapy in October. We’re still holding out hope that that was the worst of it. Now she’s just fighting through this phase and waiting for her bone marrow to come back from vacation and go back to work. Doctor V said we shouldn’t really expect to see any activity until the 26th or later.

So, ten more days. That’s our goal for Courtney – to be well enough to go home by the 31st. What better way to ring in the new year!

D – 3 and counting until transplant

Sorry, I didn’t mean to let this much time pass before updating the blog. But here’s what’s happened the past five days.

As I mentioned, last Tuesday, Courtney was admitted to Zale-Lipshy hospital for the bone marrow, or more precisely, the stem cell transplant. They admit her 8 days prior to the actual transplant so the can administer the chemotherapy that prepares her body for the transplant. Tuesday night they started her on her first chemo called Busulfan. They gave it to her for four days, four times a day for a total of 16 doses. Each dose, that was administered through her neostar catheter, took two hours. During this time, she couldn’t leave the room, so she didn’t risk spreading the toxic chemicals around the hospital.

She tolerated Busulfan fairly well, with relative mild side effects. Her worst experience was an itchy rash that was most likely caused by a steroid they gave her along with the Busulfan. To counteract the rash, the gave her an antihistamine. They thought about giving her benedryll, but since it was the middle of the day and she didn’t want to feel too drowsy, they gave her something else. Ironically, she had an allergic reaction to the other drug and they ended up having to give her benedryl anyway. She also had some mild intestinal discomfort the past few days.

We were able to squeeze in a few visits with the kids Tuesday evening, Thursday evening and Saturday morning. They aren’t allowed to go back to her room, but when’s she feeling up to it and not hooked up to any toxic chemicals, Courtney can leave the confines of her room and hallway and visit with the kids in a “family room” on her floor. They’ve been coping extremely well with their mother being in the hospital so much these past couple of months. It’s amazing how resilient and level headed they all are. It continues to be a huge blessing to have them so well adjusted to such a difficult circumstance.

Courtney’s sister, Tracy, who had been staying with her at night up until Saturday night, received her first of four rounds of Neupogen injections Saturday morning. She got her second dose this morning and so far seems to be experiencing about what the doctors told her to expect – general achiness and discomfort that feels rather flu like. So she could get her rest, I stayed with Court last night and tonight, while my mom has held down the fort with the kids at home and Courtney's mom continues to stay with her during the day.

Courtney received her last dose of Busulfan last night at midnight. I know I’ve brought it up before, but they really don’t seem to value sleep very much in hospitals. For instance, last night Courtney got hooked up to her chemo at 12:00 and then unhooked at 2:00 AM. Three hours later, although it seemed like much less, at 5:00 AM a nurse came in to check her vitals. At 6:00 AM a Fellow came in to check her over. Then 30 minutes later he came back with Dr. V who did the same checks. Another mere 30 minuets passed before her nurse of the day came in to perform the same checks. And he was followed by the breakfast lady 20 minutes later. By now, you pretty much just throw in the towel and give up trying to sleep. It’s just too painful to keep waking up right after falling back to sleep.

At 10:00 AM this morning Courtney received her first of two doses of Cytoxan. Unfortunately this one hasn’t been as nice as the first chemo drug. Within 15 minutes, Courtney’s nose felt irritated, her sinus felt pressure and her head started hurting. Her headache has lasted all day and was ultimately accompanied by bouts of vomiting. This is always demoralizing for Courtney, but we’re reassuring her that this is quite normal and almost expected with this particular drug. Her second and last dose comes tomorrow (Monday) morning, and her nurse indicated that many people tolerate the second dose quite a bit better than the first, but it’s no guarantee. So, she may be in for another long day tomorrow. At least Tuesday will be a day of rest, with NO chemo drugs.

Actually, tomorrow’s dose of Cytoxan will be her last so called chemotherapy forever. I think it may be cause for celebration, but the festivities will have to wait. Maybe we’ll toast the IV bags, since that’s about the only fluid Courtney is able to take in when she’s so nauseous.

Courtney and Tracy continue to plug along doing what they have to do to prepare for the transplant on Wednesday. There’s no turning back now. No, really, legally they can’t. They both signed papers indicating that once the chemotherapy started, they couldn’t stop the procedure from moving forward. Although, I’m not sure what would happen if either tried. Fortunately, that won’t happen, as they both know how important this is and both are anxious to make this whole cancer episode a thing of the past.

T minus 8 days and counting to BMT

Officially it’s now 8 days before the bone marrow transplant (BMT). The BMT phase really began yesterday. Courtney went to have the PICC line removed from her arm and a new central line (Neostar) placed in her chest. It’s almost identical to the Hickman Catheter that she had during the first round of chemotherapy, except that it’s the right side of her chest and has three lumens (lines or tubes protruding from her chest). The worst part, besides the post-surgery pain, was the fact that a 45 minute procedure had us at the hospital for almost the entire day. We left the house at 9:00 AM, arrived at 9:30; they took her to surgery at 12:30; brought her back at 1:15; and let us leave at 3:00. Kind of a waste of a full day, especially when it’s supposed to be your last day at home before being admitted to the hospital for five weeks. Oh well, at least she had a private room with a TV to wait in, and the procedure went very smooth.

Today was check-in day. They wanted her to arrive by 9:00 AM for admission to the hospital. Unfortunately we had to stop by the BMT clinic (five minutes from the hospital) to sign some consent forms. Courtney had accidentally dated all the forms with 2008 the other day. Legally they needed them to be correct before they would move forward with the transplant. It was an honest mistake that you can blame on “chemobrain” (an actual known condition and not a name that I call Courtney these days – I promise) or blame on nervousness as Courtney was signing papers that say she consents to procedures that could cause adverse effects including death. I think that’s enough to make anyone forget what year it is.

So we arrived at 9:30, thinking that we had just thrown off the 5 week schedule, since they were somewhat adamant that we arrive at 9:00. However, upon checking in and getting comfortable, Courtney mostly hung out and enjoyed time with her sister, Tracy. They didn’t even hook her up to her IV until after 10:00 PM. So, by my estimation, we were more than 12 hours early. Another day that could have been spent at home.

The hardest part of the day was having to say good-bye to Tracy’s children, Alex and Paige. It’s been so much fun having them around. We don’t get to see the much since they’ve been in Italy, so it was really nice getting to spend time with them. Since Tracy will begin receiving her medication in a couple of days, Alex and Paige were escorted by their Aunt Maureen to her home in Pittsburgh. She flew in yesterday just to be able to fly back with them! While it was hard seeing them go with tears in their eyes, it’s so comforting knowing that Tracy’s kids will be well taken care of, or in Maureen’s words, “spoiled rotten” for the next couple of weeks. They deserve to be catered to while their mom is here helping save Courtney’s life. Once again, the love and support from family and friends has been amazing and continues to be so. Thank you, Maureen. It was very nice to finally meet you.

We continue to be amazed at the blessings this trial has brought to our family. While it’s a crummy way to bring them about, it’s given us the opportunity to meet some wonderful people – the staff at the hospitals and clinics have been awesome; it’s given us time to spend with family we wouldn’t normally have had – it’s hard traveling with kids overseas, or anywhere for that matter; it’s helped us to reconnect with old friends and it’s been so much fun catching up with some of them. While at first all of these were silver linings in a very dark cloud (borrowing from an old cliché), they’ve helped to brighten our lives, reducing the cancer to little wisps of clouds that cast the occasional shadow.

One of the hardest parts of moving forward with the transplant is sending Courtney towards something that we know will make her feel worse than she does today. It’s like turning around and heading back into a storm that you just drove out of. Courtney’s been doing so well, with each day literally getting better. You just don’t want to see that trend reversed in any way. Yet, we know that we have to do this to give her the best chance for a cure. And were fortunate to be able to do this now and get it over with, without having to drag it out for months or even years. This time next week we’ll be able to say that Courtney is done with chemotherapy…forever. And that will be the biggest blessing of all.