For Carleen

[ErinC1973]

Carleen,

I am sorry I have to post a new topic here; for some reason it wouldn't let me reply to your OP.

Congratulations on making a decision. I do hope it all goes smoothly for you and you get a baby out of it the first try!

I'd like to speak to you firstly as an infertility patient, and secondly as a caregiver of a cancer patient. But I'd like to give you a bit of background on myself also. We started trying to conceive in 1998 when I was 25. In 1999 we started seeing a reproductive endocrinologist, had all the tests along with exploratory laparoscopy/hysteroscopy. All tests were fine. We moved onto IUI's with Clomid, did 3 consecutive months all of which were BFN (big fat negative in the infertile world!). Moved onto IVF in 2000. Had good stats, good fertilization rate, embryos were grade 1 (the best) and cell division was fantastic. Transferred 3, resulted in a chemical pregnancy. Subsequently had a natural pregnancy the following month (LONG story but it was not planned nor wanted because I was on provera, which is synthetic progesterone and not safe in pregnancy--almost wound up in a lawsuit) and had to have a D&C for blighted ovum on our 5th anniversary. Did IVF #2, had terrible numbers, it was a bad cycle all the way around, transferred 5 and it was a BFN. Switched RE's and reverted back to IUI with injections in 2001, first two were BFN, third resulted in my twins who are now 4. I am almost 31 weeks pregnant with #3, a boy, which is a miracle pregnancy

(natural conception). I'm leaving out a lot, but this is the general idea.

When I was doing my first round of IUI's, my stepdad was going through his chemo for NSCLC in 1999 and getting sicker and sicker. I seriously felt like a time bomb was ticking inside me and if I didn't get pregnant I'd not be able to give him anything to live for. He never saw us realize our dreams. My grandpa (whom I lived with until I was 14) died exactly a year later. I went through all of those emotions in 2000 again, trying to get pregnant and give him something to live for that entire year. My husband sat me down one day and told me he felt like he was always running to try to keep up with me regarding all of the treatments, appointments, meetings, etc. I became a moderator for a website for people dealing with ART (assisted reproductive technology) answering questions generally geared towards beginning advanced medicine. I also became an advocate for insurance rights for infertility patients. My life was wrapped around the world of TTC.

When my grandpa died, I stepped back and thought of all the stress I put myself under to get pregnant. My new RE forced me to step back in treatment, too. I begrudgingly agreed. I told him to get me on the waiting list for the next batch of IVF'ers, though. Talk about being surprised when we saw FOUR beating hearts on our ultrasound! (I went on to lose two of the quads at 9 weeks).

What I want to tell you is that IVF completely changed my life. I seriously don't think I could ever EVER do it again. I just don't think I'm a strong enough person. The drugs made me crazy. I had hot flash upon hot flash. My best friend is beginning her journey with infertility now. I just gave her my stack of books. I feel for her so deeply; they have been trying for 7 years without going to the doc because she has always been afraid to get a diagnosis. And unfortunately they have no insurance coverage so this is another stressor. Of course I've been doing what I can to guide them on bringing their costs down. We were lucky to actually have insurance because we live in a mandated state, but we didn't always have insurance so I learned how to make things work.

Unfortunately what any RE will tell you is that generally the first IVF is a learning experience for both doctor and patient, and if you get pregnant it should be considered a BIG plus. You can't know going into it (unless you've done previous injectible cycles) how your body will respond to the drugs. You may need more or less; there is little room to tweak them when you are in an actual cycle. All of this means the $$$ adds up.

Today, as I said, I am 31 weeks with a miracle baby. Unfortunately, there is little room to rejoice because my mom's cancer is growing. She lives with us and has MANY medical issues--wheelchair bound from polio, scoliosis, osteoporosis, breast cancer in 1999 (three weeks after my dad died), polycystic kidney disease diagnosed a month after my twins were born, and now she is on dialysis, and got the LC diagnosis the month she got her five year NED from breast cancer. Top it all off with the fact that my mom went to chemo three weeks before Christmas, came home, walked in the door, and fell, breaking her arm and kneecap. Since she needs her arms to walk any length with a walker, she was hospitalized for three weeks and then transferred to skilled nursing care, where she has been for three weeks. The best part of it all??? I'm at home, on complete bedrest, and have only seen her three times in six weeks because I've been in preterm labor since 19 weeks.

When I got pregnant with my twins, of course it was a high risk pregnancy because of multiples, but also because we had done ART. We never knew I'd have preterm labor beginning, again, at 19 weeks. No one could know. I had a lot of other issues, also, and had to go three times a week to the hospital for testing. At 29 weeks I was admitted and stayed there, strung out on drugs, for 47 days. I ultimately delivered two healthy babies, but it was a long, hard road. This road is even harder, with toddlers to care for. At this point I'm just biding my time until I am admitted, and then my mom will be away, and I will be roughly an hour away from her, and my husband will have to divide his time among the kids, my mom, and me. His commute to work is 55 miles one way.

I feel utterly helpless, hopeless, and guilty because I cannot be with my mom and support her. Her healing of her broken bones is going well, but her pain seems to be getting worse from the cancer. Her schedule for the week is like this: Monday, Chemo and therapy, Tuesday Dialysis and Therapy, Wednesday Othro surgeon and therapy, Thursday Dialysis and therapy, Friday therapy, Saturday Dialysis and therapy. Sundays hubby or my aunt brings the kids to see her. I swear with everything in me that before I got pregnant and was able to go to her appointments with her this is when she was doing well, her tumor disappeared, and she had a great attitude. I know she does not begrudge me for this pregnancy ONE BIT, but because I can't get out of bed and help her I suffer the guilt of being responsible for her tumor growth. I saw that you are in WI; looks like you are just about 2.5 hours from me. We go up to Cancer Treatment Centers of America once a month. Unfortunately since my mom fell she has had to go locally...another reason I feel like things are going downhill.

IVF is a time-consuming, exhausting process. I know literally hundreds of women going through the process now (actually most of them are on #8 or up at this point, I've known them so long) and they say things I could completely relate to--they live their lives in blocks of time--beginning of cycle, waiting for labs results, then down regulation cycle, in anticipation of starting stims, then ultrasound after ultrasound, then retrieval, and fertilization, then waiting for reports on results, and the 2WW (two week wait) for the pregnancy test, and then waiting the month to re-cycle again. You are such a strong person for making this decision--I wish you the BEST of luck and I do hope to hear you were successful.

I can only imagine what it would be like to be exactly in your shoes--in this aspect I can only guess you to be extremely torn in your feelings; on one hand, excited at the prospect of bringing a new life into your lives, and on the other, scared of what the future may bring with your husband. I do also know couples who are going through your situation now (testicular cancer, i.e.) and what you are feeling is completely normal. I don't know which clinic you are going to , but most clinics nowadays require counselling before begnining the IVF process, and they have psychologists on site to help. We went through all of this for four years--a specialist not only in the field of psychology but infertility is invaluable at this point in time.

The CDC stats for reproductive clinics just came out last month, and on my boards there is a lot of talk about them. Clinics have a habit of inflating their stats one way or another (it's hard to explain, but suffice it to say that I've been there). There are a lot of facets to stats--my clinic, for instance, had the best-rated lab in the country, which meant their embryologists were top-notch. It is interesting to compare stats between your own clinic and THE top clinics in the country: Cornell, CCRM, St. Barnabas, for example. And of course the success rate is only pregnancies--the number of live births goes down drastically in any clinic, and you need to factor in cancellations (and why?) and miscarriages, and that number goes down. For instance, the clinic my best friend is going to interestingly had a five percent decline in live births from 02-03, and a significant decline in general success for ages 35-39...and their rates weren't too hot to begin with.

If they haven't talked to you already, you need to enquire about a clinic's "package deal," for instance, a lot of clinics these days offer three IVF's for x amount of dollars, and if you don''t take home a baby in three cycles, you get a percentage refund. I was looking at a local clinic's website this week and they are the first I have ever seen to offer a 100% refund! Pretty impressive. Of course frozen cycles are significantly cheaper, but you have to be able to GET the embryos to freeze to get that far! Also, if you are a cash-paying customer and pay for your cycle up front, they should offer a discount of 10-20% off the top. Of course this doesn't include meds, which are a significant portion of your cycle. But...there are other ways of getting your meds cheap...on the record, I donated my unused meds to my clinic after I was finished cycling, and they give these meds to patients. Off the record...I have helped friends get their meds for a LOT cheaper than the recommended mail-order pharmacy...

Gosh, I so hope this works for you. I am continually amazed by your strength, although I know I don't post too often anymore to show that support. I have honestly been avoiding this place--denial I suppose. But coming here today brought back a flood of reasons why I joined in the first place. I think I saw where you are starting your meds next week---which ones will you be on?

My best friend and her husband are at the RE's office as I type this for their consult on their BIE (basic infertility eval). It brings back memories...and I've always been honest with them about how hard it is. But you'll never know if you don't try!!

All my best to the both of you, in every facet of your marriage. You are about to embark on a scary journey, but having been through all of this cancer #e!!, it should be a cakewalk!!

Erin