Rough Week

Chemo brain has thoroughly set in, so if this post is a bit stream of conscious, bear with me! My second round of chemo worked the opposite of my first. My first round, I felt off for the first 4-5 days, had some isolated nausea and other problems the first couple days, and then felt pretty much great until my next session after the fifth day or so (with the exception of a migraine that may not have even been related to chemo). This session, I started off feeling fairly well for the first 4-5 days and then things went down hill after that. I went back to work on Tuesday morning feeling fine, and was there for about an hour and then immediately got sick and stayed sick until this morning. My nausea went from being nonexistent prior to Tuesday, to being pretty steady until today. I’m really over having to discuss my nausea and bowel movement appearance at length, so I’ll spare the blog community from this.

Prior to my battle with nausea, I did have several really good days which I’m very thankful for. Rene and I did quite a few errands over the weekend and had a board game night with some other Army couples that live in the area and also commute to Fort Hood. My sister, Marisa, came to stay with me for my second chemo so it’s been extremely nice having her around to help out with things. We also went to church and took my in-laws out for a late Father’s Day meal on Sunday. They also gave us and set up a new grill for our 2 year anniversary (which was Monday!) Overall a great weekend, but I think I overdid it which lead to my rough week.

Adding to the problem is that a couple days after my second chemo, my less than 2 year old scottish terrier (Frasier) was diagnosed with mange. If anyone has never dealt with this (and I hope you don’t), it. is. awful. The poor thing is on more medications than I am. The vet put him on an anti-anxiety (3x/day), anti-itch (3x/day) and anti-biotic (1x/day). We also have to treat him with advantage multi once a week for two weeks, and also give him baths with a medicated shampoo 2x a week until it clears up. I’m not supposed to interact with the animals much at all due to risk of infection, so Rene & my sister have been bearing the brunt of it. I really sympathize since prior to chemo I itched all over for about 2 months. I’m really worried his immune system is suffering because he’s picked up on the cancer stress in the house, and it really makes me feel awful. It’s taken about a week, but luckily Frasier’s skin has cleared up quite a bit. The poor thing has several bald spots though, which brings me to the next topic: hair loss.

A few weeks ago I started my journey trying to find a wig and get TRICARE to pay for it. Luckily, due to the amazing ladies at P&H Services in Cedar Park, I was able to get TRICARE to pay for one wig. As I’ve mentioned on here before, TRICARE was a bit difficult. On their website it was pretty easy to figure out that they were supposed to pay for a one wig, one time for a cancer patient. When I called to ask about this, they said my primary care manager (PCM) needed to make the referral. They did not explain to who the referral needed to be made or where to go to find participating vendors. When my PCM called them to ask how to do that, they told her that she just needed to write me a prescription and I could take it into a medical supply shop. However, they did not give her a list of any participating medical supply shops. Through some lucky Googling, I found P&H Services and left a message on their online form basically saying, “Do you know how I can get TRICARE to cover a wig? Please help!” Luckily, they were able to liaise between TRICARE and my PCM and get the proper paperwork taken care of without my further involvement (Praise the lord!) Long story short, is that yes, to get TRICARE to pay for the wig your PCM does need to make a referral to the medical supply shop but it seems like you’re able to choose which one you go to. I’m just glad that I found one that knew what to do and could handle it without needing me to do anything else.

So  I approached Operation Find a Wig very much like Operation Find a Wedding Dress. A couple of weeks ago I started my wig journey with my friend Megan. Megan is a friend of mine from Lafayette who also ended up in the Austin area around the same time I did. She’s also an aesthiology (skin care professional) and the first person I thought of to come with me to look for a wig. We tried on pretty much every wig at P&H and took pictures. I then sent the pics out to my close friends and family, but I really wasn’t ready to make a purchase until I had my mom with me. I also requested a few more wigs in different colors closer to my natural hair color as well. P&H offered to order these for me without charging me since they needed some new ones for inventory. Luckily my mom came into town on Sunday and we went wig shopping on Monday. I slept on it a night and ended up purchasing this one on Tuesday:

This is the Jon Renau HD Flame wig. These wigs are awesome because they  can be styled.

This wig worked well for me because its easy to part and my mom and husband were both comfortable with it because its similar to how I wore my hair in college.  I had considered going curly or with a drastically different hair color, but in the end it was really important to me and my family that I looked like me. It came in at the perfect time, because my hair started falling out last weekend. Luckily, I was blessed with a head of thick hair, so it wasn’t immediately apparent. But I personally hated the constant falling out. And because my hair is so thick, it was pretty much constant and had the potential to drag out for a very long time. When I came home from work sick on Tuesday, I was ready to shave it. My mom and Rene took an extra day to be convinced, but on Wednesday evening we all agreed it was time.

(Pastor) Amy recommended I go see her friend Bethany at Super Cuts. This was even more perfect than Amy realized because Bethany told me that she shaved her head when her mom went through chemo 5 years ago. She really empathized with us and kept telling me how brave I was the whole time and that it was okay to cry if I needed to. Marisa took a video of the shaving process, but since I don’t want to pay WordPress to post it you can see it on my Facebook page at www.facebook.com/TheLymphomaLetters.

Before: Waiting in the lobby for my shave

After: I posted this one to Facebook after my shave and really appreciated all the supportive comments I received! It really made me feel that I was still beautiful!

As we headed out from Super Cuts Bethany told us that one of her other clients has paid for my hair cut and not to worry about it. One thing about cancer that I’ve noticed is that every time I’ve reached a really low moment, people always find a way to show me how wonderful they are. And God shows me that he’s still with me no matter what.

Chemo Eve

So I admit I was overly cocky about the Novarel (HCG) shot. If you recall, I had said I would give the HCG shot to myself at “exactly 8 p.m.” on Saturday night. That didn’t quite happen. I had it prepped and all ready to go. I watched the how-to video several times, I even invited my friend (Pastor) Amy over for moral support. And I just couldn’t go through with it. At one point I had gone so far as to get the needle up to my skin, but since it was an intramusucal injection in my hiney as opposed to be subcutaneous (fatty) injections in my tummy that I was used to, the needle basically just bounced back. Despite watching the how-to video where it talks about using a fast “dart-like” motion, I was convinced I could just slowly put the needle in like I had done with my other shots. Knowing you have to inject yourself with a 1.5 inch needle and actually looking at it (and being in a very unnatural position while doing it) is all very different than watching the how-to video.

So Amy was a gem and started making phone calls to all the healthcare professionals she knew in the area. About an hour and a half later, she drove me to Florence (a town about 25 minutes away) to meet up with our friend, Jessica. Jessica is a nurse and was a friend from our former church in Copperas Cove in the Fort Hood-area. She basically had me drop trow in a church parking lot, while Amy stood guard, and was done in about two seconds. I could barely even feel it at all, but she was nice enough not to make me feel like a huge baby for not giving myself the injection. We were convinced we would get arrested for drug dealing or something, but luckily our late night church parking lot injection went unnoticed by the people of Florence.

I proceeded to freak out because at this point the shot was about 2 hours later than it was supposed to be, but I was convinced by the on-call nurses and my friend, Victoria, that it would be fine and wouldn’t affect the egg retrieval on Monday, and luckily it did not. All in all, the egg retrieval went pretty well. We had to be in day surgery by 6:30 a.m., so we opted to stay in Temple the night before so we didn’t have to worry about oversleeping, potentially hitting I-35 traffic, etc. I’m all about limiting stress as much as possible. Unfortunately TRICARE doesn’t reimburse travel unless its 100+ from your residence and the Temple hospital is only 48 miles away, but c’est la vie. I won’t complain since TRICARE covers so much compared to other insurances.

Thanks to everyone’s comments, I was very vocal about having adhesive allergies and they gave me paper tape this time instead of the regular bandages. I didn’t have any issues from the bandages this time, thankfully. They did, unfortunately, stick the IV in my hand. However, since I was very vocal about my distaste for hand IVs, the nurse numbed be up really well beforehand. So other than the initial shot, it wasn’t too bad. I’m learning that being vocal pays off!

They doped me up for this procedure more than any other. From the initial shot in the IV, I started feeling dizzy. I remember them wheeling me into the operating room and chatting with the nurses. I remember that one of them told me she was pregnant with twins, so I shared my story about the psychic and gave her baby name suggestions (Aidan spelled backwards is Nadia if anyone is interested). I remember moving off the gurney to the operating table and after that I was completely out. I woke up in the recovery room seemingly seconds later. After waking up, I continued to lose time quite a bit. I kept thinking I had gone back to sleep, and Rene would tell me that no, I was just talking to him 30 seconds before that. It was pretty humorous. The doctor came in a little while after the procedure and told me they had gotten 17 eggs! That I definitely remember.

On Tuesday, the embryologist called to tell me we had 7 embryos. Today we had 9, so that was very exciting news! According to the embryologist they were “tarty for the party!” It’s very likely we’ll lose a few over the next couple of days but that’s definitely a good number to start off with. Much more than we had hoped or dreamed we would have.

The recovery hasn’t been too bad. I was a nauseated the first day, but that was might have been my fault since I was overly confident in the anti-nausea medicine and decided to eat left over Chinese food. Again, I’m still learning. Now that we can cross IVF off our to-do list, I went to the dentist for my 6 month check up. Unfortunately you can’t have dental work done while you’re on chemo due to infection risk, so I wanted to get a good cleaning in beforehand. I also met with my oncologist to touch base yesterday. My chemo starts on Thursday and I think both Rene and I benefited from having a talk with her. Since we’d been so consumed with IVF, I hadn’t seen her since my bone marrow biopsy more than 2 weeks before, and Rene had never met her.

One of the most frustrating things about chemo is that I have to give up all raw foods, including fruits and vegetables. I can still have them canned, frozen, or cooked, but the risk for bacterial infection is too high with raw. That also means I can’t have any sushi, which is basically an entire food group in our family’s diet. So as part of a pre-Chemo celebration, Rene took me to Chik-Fil-A yesterday so I could enjoy my usual grilled chicken sandwich complete with lettuce and tomato one last time before chemo. We then went to Walmart to stock up on some chemo friendly snacks. That proved a bit too ambitious for me, and I got pretty cramped up on that trip, so I took it easy the rest of the evening and re-watched some of the episodes from True Blood last year to pump up for the new season.

Today, Rene went back to work and I mostly relaxed. One of my other favorite “meals” that I won’t be eating during chemo are the soft-taco supremes from Taco Bell, so I ventured out to get those at lunch. This also proved to be too ambitious, and from a combination of my recovery, the Texas heat and waiting too long to eat I got a bit dizzy and nauseous while I was out, and didn’t enjoy the meal as much as I wished.

While I was out, I also retrieved my prescriptions from the pharmacy. Luckily, I’ll be getting a numbing cream so I can prep the port area before chemo starts tomorrow. They also prescribed me a pain killer. While I’m on the chemo, I’ll be immuno-suppressed and they need to know about any kind of infection I might have, so I can’t take any Advil, Tylenol and basically any over the counter pain medication because they can mask fevers. They also gave me anti-nausea and anti-inflammatory medicine to help assuaged some of the other chemo symptoms as well.

I get asked a lot about what kind of side effects I’ll have. I’m honestly not sure because chemo is different from person to person, session to session. The main things to watch out for are fatigue, nausea, constipation, loss of appetite, lethargy, light sensitivity, proneness to bruising and infection. I will probably lose some of my hair, if not all.

People always seem really fascinated and horrified with the hair loss aspect. Losing my hair is honestly the least of my worries. I just got in a multi-pack of turbans I ordered from Amazon, and they seem like they’ll get the job done if/when I lose my hair. Part of me is really not sad at all about the prospect since I’ll get a break from bad hair days and expensive haircuts for awhile! I’ll also potentially lose body hair which means I’m not plucking my eyebrows until further notice. Why put myself through such torture if I’m just going to lose them anyway? I’m still shaving my legs because, I mean, a girl has to have some standards. But honestly, hair loss is not something that bothers me a whole lot. Watch me freak out in a few weeks when it does happen, but right now I feel okay with it.

From extensive Googling I also found out that TRICARE will pay for one wig. I called my primary care manager and she’s going to figure out how to navigate that system to get that paid for, so I’ll keep you posted on how that process is works. Right now I’m planning just to wear the wig for special occasions and maybe to work, otherwise I’m going to turban it up or go au natural. As an Alias fan, I’ve always had a penchant for wigs anyway, so I might just stock up on some cheap costume ones with bizarro colors just for funsies.

I’m the one in the bright red wig dressed up as Sydney Bristow from Alias in this Halloween 2005 photo.

I also learned from Victoria that I qualify for a temporary disability tag, so my PCM is also helping me out with that process as well. Apparently it has to go through the tax office and not DPS or the DMV, who knew? Victoria also told me about this amazing program called Cleaning for a Reason, where maid services volunteer to clean chemo patients houses for once a month for free. I’ve already been approved and have my first session coming up in mid-June. I’m super ecstatic about this, and my house, pets and husband will also benefit greatly!

The actual chemo process starts tomorrow morning. So Rene is taking me out tonight for sushi for a “chemo eve” date, and then we’ll be in the hospital for more than four hours tomorrow while I receive treatment. I’ll keep you posted on how that process goes!

Edit: I also can’t have fresh flowers due to chemo. Quite a few of you have been amazing and have ordered some for me the past few weeks. Starting now, I won’t be able to have them in the house. If for some reason you’ve already ordered some for me, don’t worry, I’ll have Rene get them to a nursing home or some other deserving purpose.

IVF with Cancer

Since my port placement, I haven’t had a lot of specifically “cancer stuff” happening. Rene and I enjoyed a nice, long weekend for Memorial Day last week. We did our fair share of laying around the house, and Rene’s parents also came down from Waco and we went to the zoo, played Fact or Crap, made a frozen yogurt trip, and ate at a German restaurant (the land of Rene’s & his mother’s births). I was able to go back to work on Tuesday for most of the week, and I have to say I was ready! Although I do enjoy my “cancer uniform” of sweats and over-sized button downs, it was nice to feel well enough to go to work and have somewhat of a routine for a few days.

What brings me to the topic of this post is that while I haven’t had any cancer-specific appointments since my port placement, I have been undergoing fertility treatments. Since I chose to blog so publicly, I waited awhile to make this entry because its such a sensitive topic to so many people, I wasn’t sure if/how I wanted to approach it. I also wanted to have as much information as possible to share with you, in case this blog turns into an early resource for someone who just found out their own diagnosis. Unfortunately, possible infertility is just one of the many harsh realities that both male and female patients have to deal with, and my goal with this blog is to be as open and honest about the experience as possible.

I was extremely fortunate that the possibility of infertility was brought up with me early on. From what I understand, not everyone is given that information beforehand and have since struggled to have children. The pulmonologist was the first doctor I saw after my diagnosis and he made sure to put it on my list of things to ask the oncologist about. The oncologist also made an appointment for me with a fertility specialist the same week I saw her. Fortunately, the fertility outlook for the form of chemo I’ll be taking is fairly positive, however, the chance was still high enough to be a concern. Rene and I always wanted to be parents, and although I’m open to adoption, having biological children isn’t a door I want to risk closing just yet. In addition to chemo, I’ll also be doing radiation during my treatment which also has its own set of risks. Since we can’t predict how well I’ll respond to the initial treatment, it’s always possible they could try something that might be less friendly to fertility as well.

Being in our mid-20s and only having been married about 2 years, Rene & I had never attempted to conceive before. My knowledge of ultrasounds was based on one surface ultrasound I had a couple years ago when someone suspected I had ovarian cysts, and I was told to have a full bladder so they could more easily read the ultrasound. So I went to my first fertility consultation appointment thus, and quickly discovered I would be having a vaginal ultrasound and a full-bladder is actually not a good thing to have. It was uncomfortable for me and the doctors kept complaining that my bladder was “in the way.” Just a head’s up for anyone going in for fertility counseling, but I digress…

Once they determined I was otherwise healthy and fertile, the doctor explained to me that there’s several options:

Egg harvesting: I take hormone shots that encouraged my body to release a large quantity of eggs and then the doctors go in and get them. Afterward they cryofreeze them until Rene & I are ready to have a baby, and then they thaw them, fertilize them and implant them.

In vitro fertilization (IVF): Egg harvesting + using sperm to actually fertilize the eggs and create embryos. The embryos are then frozen until we’re ready for them and then they’re implanted.

Lupron: A monthly shot that basically shuts down the ovaries. Studies indicate that women who are on lupron during treatment have a higher chance of fertility afterward.

My doctor recommended IVF because its the most reliable method, and also using lupron throughout my treatment. If any other Grey’s Anatomy fans recall, Izzy & Alex did IVF a couple of seasons ago for the same reason. (Maybe they’ll bring Izzy back for this potential plot line for the future?) Although egg harvesting and storage is now becoming more available, there’s just not a lot of research on how well those eggs fertilize after being cryofrozen for a time. A lot of women are in the process of freezing eggs, but not a lot of women have retrieved them yet. The research they do have indicates that embryos are more likely to result in viable  pregnancies than the eggs being fertilized after being frozen. However, a lot of people do choose egg harvesting because its more affordable and because many women are single and would rather save their egg’s for Prince Charming’s sperm rather than donor sperm. Whatever the situation, people choose different methods for different reasons.

I’d love to say we did a lot of research, soul searching and praying before making our decision, but that just wasn’t the case. Given the fact that I a) have cancer, and b) was about to start my menstrual cycle, we had to make a decision extremely quickly and we opted for IVF. It just felt like the “right” path for us. To allude to Hunger Games, the odds have NOT been in my favor thus far in the sense that I’ve been diagnosed with cancer at 25 period. We always wanted to be parents and I wanted to increase our odds at having little Rene’s and Laura’s in the future as much as possible. Unfortunately, IVF is not a cheap route to take and right now most American insurance companies don’t cover it– including TRICARE– which is the military insurance that I have because Rene is active-duty. IVF is generally between $10-15K per treatment, and our experience has fallen into that. Luckily, TRICARE will cover everything else related to my cancer treatment and we decided it was a cost that was worth it for us.

The nurse did refer me to several charity programs out there for people who are undergoing fertility treatments due to cancer though, so I definitely recommend anyone in a similar situation to check them out. Lance Armstrong’s LiveStrong Foundation (which happens to be based locally in Austin, TX) has a whole program dedicated to fertility called FertileHope.org. FertileHope works by offering a list of participating clinics that offer discounted fertility services. In addition to the FertileHope discount, we also qualified for a military discount, and the estimate we received for IVF at the Austin-area clinic was around $7,500. Coincidentally, my friend (Jersey City) Amy had connected me with her friend Victoria St. Martin who went through IVF last year due to breast cancer. She did IVF through another charitable program, the Sher Institute (HaveABaby.com) and referred me to their participating clinic in Dallas (about 3.5 hours away). If you’re interested in learning more about her journey, you can visit her website at breastcancerat30.com. She’s been an amazing resource for me throughout this experience.

The quote we received from the Dallas clinic was about $5,500. Unfortunately, the charitable programs weren’t able to offer long-term storage of the embryos and future implantation was going to be at least $3,000. In the end, we opted to stay with our physician at our current healthcare system since we already had a relationship built with them and they were able to offer us a payment plan on a package that included harvesting, storage and future implantation for about the same total price. We also were not up to driving to and from Dallas due to cost and time constraints. So although it was more money upfront, it will probably pay off for us in the future and be more convenient since we won’t have to travel as far. We still have to travel about 45 minutes north to our healthcare system’s headquarters. Again, this is just the route Rene & I chose, it’s really specific to the situation. I would say that if I had been single or didn’t have TRICARE to cover my additional expenses, or lived in Dallas, etc. I probably would have gone with the charitable organizations. I think it also was a great option for those interested in egg harvesting, which was around $1,000 or less. The additional resources page on FertileHope was also a tremendous help, http://www.fertilehope.org/financial-assistance/additional-programs.cfm. They also offer information about options for men going through cancer treatment as well.

Before I even left the office at my first consultation, we started the IVF process. They decided to go ahead and give me my first lupron shot. As mentioned earlier, women can receive this shot to help preserve fertility. Lupron also serves a purpose in IVF because it prevents early ovulation. The doctor decided to go ahead and give me the lupron shot because even if we opted against IVF, it would be good to have a lupron shot in my system for when I started chemo. The second step was my doctor personally wrote a letter himself to my husband’s commanding officer. The essential message of the letter was, “I need Rene’s sperm!” Not a topic your doctor usually has to discuss with your husband’s boss, but there’s the Army life for you. Rene was still in Kuwait at the time, and his leadership had been waiting for a treatment plan for my cancer before they decided if/when to send Rene home from deployment early. Luckily, the letter worked its magic and Rene was back home within 48 hours! I don’t think I’ve expressed enough gratitude to the Army for this, so thank you thank you thank you!

The next step was waiting for my period to start which was a couple days later (TMI, I know). They had my fertility meds shipped to me the next day. The meds really have been an adventure unto themselves. The primary med is Bravelle. Bravelle comes in a powder form that we then have to mix together with sodium chloride and administer the shot ourselves. Upon learning this, our first thought was, “Uhh…… are we qualified to do this?” FreedomPharmacy also sent us a how-to video that we watched the night before (and rewatched the day of the first shot) to help calm our nerves. Luckily I had Victoria as a resource to give me tips. We also called the nurse twice for reassurance that small air bubbles wouldn’t kill me, etc. The Bravelle comes in boxes with five vials to take a day. Fortunately, the nurse informed that I didn’t have to take five separate shots a day, but can mix the vials together for two shots a day. I take 150 iu (two vials) in the morning, and 225 iu (three vials) in the evening for a period of 10 days. They can either go in the fatty tissue of the stomach, or the thighs. My friend Victoria swears by the thigh, but I found that the tummy was easier. So again, it’s just a situational thing. Victoria found it easier to do the mixing herself and have her boyfriend do the shot. Since Rene felt qualified given his experience of administering a grand total of one IV for deployment training, we had initially planned to take this route as well. However, when push came to shove I preferred to do the shot myself. I liked having control of where it was going and when! I started last Thursday and today is my last day. Tonight at exactly 8 p.m. I have to give myself a shot of Novarel (HCG), which basically will tell my body its time to ovulate. I’m pretty intimidated by it as the needle is quite a bit longer, and I’ll have to use more solution, which means it’ll take longer to inject. Those milliseconds really seem like a long time when you’re giving yourself a shot!

My egg retrieval will be Monday morning. I’ll know that day how many eggs they’re able to retrieve, and by the end of the week we’ll know how many fertilized. Unfortunately, IVF is not an exact science. They might not be able to get every egg that is released, and not every egg will fertilize, and not every embryo will implant, etc. There’s also the tragic situation that I’ll ovulate early and they won’t be able to get any eggs. As my doctor explains, ovulation is one of mother nature’s greatest instincts and she doesn’t always like it when we try to mess around with her. However, all my tests and ultrasounds (of which I’ve had many the past two weeks), have been positive, so I’m very hopeful by this time next week I’ll be able to tell you how many embryos we have. We also made the decision that any embryos that we have that go unused will be donated to other couples. Although it will be weird to have biological children out there that we don’t even know about, I’d be happy knowing we may have been able to help another couple have a family. Again, it’s a personal decision people going through IVF might have to consider.

Interestingly. when I went to Voodoo Fest in New Orleans in 2006, a psychic told me I would have a set of fraternal boy/girl twins. At the time I rolled my eyes because no one in my family has ever had twins to my knowledge, but now I’m seeing how it might be a possibility since IVF increases the chance of multiples.

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Thanks to Facebook, I still have a photo of my 19-year-old self paying apt attention to the psychic who told me I would one day have twins at the 2006 Voodoo Festival in New Orleans.

Victoria was also told she would have twins by a different psychic. Maybe this is a go-to prediction psychics give young women? Who knows. The odds of that prediction being correct for most women are certainly not in their favor! Only time will tell I guess!