To anyone that cares to read about my return
Posted: Mon Dec 22, 2008 10:31 am
First off I would like to apologize to anyone that was at the Epic Meet that I committed to attending. As a result to not showing up at the meet I was told that I am not a well liked person on this forum anymore, and if others agree that is their choice. As a couple people on the forums know that I have met at various meets in the Midwest that on July 23rd my wife was diagnosed with stage 3 adenoid cystic carcinoma breast cancer so my situation has been quite busy. If anyone does not know of this type of breast cancer it is a very serious type and occurs in less then 3% of cancer patients. Our road has been long with a lot of support from friends and family helping out where they can. Her cancer was also estrogen positive which isn’t normal for her type of cancer. Well with a little background on the subject I can get to our story.We were planning to start a family and my wife made an App. with her gynecologist, her appt was for July 21st, on the 20th she was doing a self exam and found the lump. On the 23rd She went to her appt and made mention of it to her Dr. the Dr. wasn’t very concerned about it because of her age (my wife is 27) but sent her over for x-rays to be safe. After reviewing the x-rays the Dr.'s were highly suspicious, of the mass and decided that a biopsy would be good. They scheduled the biopsy for the 22nd in the morning. The next day we go in for the biopsy and the rush the testing to get answers for her. About 2:00p.m. we got some answers in the form of it is lymphoma or basically cancer of the lymph nodes. They originally diagnosed it as Hodgkin’s Lymphoma because of her age and the location of the mass (high up on the right side of the breast near the arm pit). The original testing did not show as breast cancer but showed as cancerous cells of an unfamiliar type as the Dr.’s described to us, so they diagnosed it based on age and location and test results. They scheduled surgery for removal of the tumor for the 29th of July. We spent the weekend telling family and friends. On Monday the 28th we get a call stating that they were moving the surgery to the next week as the surgeon wasn’t comfortable removing the tumor with out an exact diagnosis of the tumor. They sent copies of the X-rays with portions of the biopsy sample overnight to Johns Hopkins, Mayo, University of Chicago, and University of Madison for further testing They all came back and said Breast Cancer. We thought we were set came time for surgery and once again it was canceled and moved down another week as Mayo and Johns Hopkins were now second guessing their original test, once again based on age and location, and they want to run further test. We meet with our surgeon and he wants to refer Katie (that’s my wife) to Madison to have some additional testing done to help with the diagnoses of the cancer; one being a full body scan with a machine that they do not have at their hospital and to do a bone scan to see it the cancer had spread to her bones. The bone scan was negative, and the body scan reveled that the tumor had doubled in size and was growing rapidly. One of the earlier test confirmed that the cancer was in the lymph nodes as this scan confirmed. Now we are getting confirmation that it is in fact Breast cancer and now it is time for surgery. On Aug 5th we go in to have the surgery and get the tumor removed, when they remove the tumor they also took all the level 1 lymph nodes as well as some of the level 2 lymph nodes to biopsy to determine how far the cancer has spread. The cancer was in all of the level 1 lymph nodes as well as 70% of the level 2 lymph nodes that they removed. This is where the diagnosed it as stage 3 meaning that it was more advanced and it was now able to spread even though the tumor was removed because of the advancement in the lymph nodes. Katie spends the next week recouping for the surgery, and we have to go to a post op with the surgeon. This is where we discussed what form of treatments she would be looking to and when she would potentially be starting, and the discussion of the long process it will be for us to have children. The surgeon refers us to an Oncologist out of Rockford that will be taking a full time residency at the cancer treatment in Freeport where Katie works to discuss further treatment of her specific cancer. We ask the Oncologist about having children in the future and he says that it will be very unlikely that my wife will be able to conceive after her treatment because of the damage that Chemo does to the body. We ask him his opinion and he says it would be best to go through treatment and see where we are after and try for a baby then or adopt. We also talk to her Family practice Dr. as well as the Dr. She works for. They give us other options in means of harvesting eggs. We set up another appointment with the oncologist to determine if this was a logical choice. The reason he didn’t give us that as an option because of the levels of estrogen that would be needed to produce the amount of eggs needed for the retrieval to be successful. He was concerned being she had an estrogen positive tumor that the estrogen produced by the fertilization process would form new tumors, and he wanted to start chemo ASAP and this would prolong the treatment, but said in the end it was our choice So once again we talk to the surgeon, Katie’s Dr. and the Dr. she works for and they all concur the with the oncologist but insist that if we want children that we should strongly consider the egg harvesting route to be 100% sure that she has eggs, because after the treatment she might not be able to produce eggs. In the end we decide to look into egg harvesting and let all the Dr.’s know where we stand. Katie and I were having trouble looking into clinics for this; Katie’s Dr. was also looking for a clinic for us. We were all having trouble because her tumor was estrogen positive; the process was too risky for them without the chance of Katie getting cancer back. On Aug 21st we get a call form her Dr. with great news, she found a fertility clinic that would not only do the egg retrieval but they offered to waive all their retrieval fees, ultrasound fees, storage fees, and Dr. visit fees. We set up an appt. for the 28th to go meet the Dr. The facility that would do the retrieval was located in Middleton WI just 5min from Madison and 3.5 hours from home. We meet with the Dr. and discuss the fertility process and find that it is a relatively fast process moving at about 4 weeks from our first visit. We also get the final number that the process will cost for the injections that were needed thinking the insurance would cover. We turned a claim into her insurance, because they covered $10,000 worth of fertility bills over a lifetime which would have helped pay for most of the cost of the drugs and injections needed. About a week later we got a denial letter from the insurance because my wife was still fertile and was not considered infertile until her first round of chemo, but then it would be too late to retrieve the eggs.Our next appt. with the fertility clinic was on Sept 9th. We had to take our denial letter with us for proof that we were denied insurance for the drugs needed, and that we would have to apply for loans for the meds. We get to the appt. and the financial assistance person requested to see us as she had some great news that the pharmaceutical company that makes the meds decided to donate most of the cost of the meds leaving us to only need to pay $5862 for meds that were needed but not made by that company. If anyone is interested our final fertility bill was 22028.63 so for us to only have to pay 5800 of it was great. Katie is pretty close with her Dr. and was telling her the story of how the pharmaceutical company donated most meds and that all be had to pay was the $5800 left over. A couple days later we get a call from her Dr. stating that the hospital that Katie works for is picking up the rest of the tab. So now with all the hard stuff out of the way we can get on with treatments. Ove
r the next couple weeks me have to periodically drive back to Middleton for checkups on Sept. 15th, 18th, 22nd, and the 24th and one the 26th we made our last visit for egg retrieval and to have embryos made.On the 26th Katie had surgery to have her port placed for chemo and her chemo started on the 8th of Oct. Katie now goes to chemo every 3 weeks and gets 3 drugs administered in one sitting and she has to give herself a shot of neulesta the day after her chemo. The neulesta shot is to help her while blood cells regain after chemo as she is much more likely to get sick. Katie generally feels sick from the day after chemo up to about 3-4 days before her next treatment. She now only has 2 treatments left that will end at the end of January; then she will move onto 5 weeks of radiation. After that she will move onto a daily pill that is essentially a low dose of chemo for 5 years then we will be back to have our embryos placed and hopefully get pregnant. Katie has also been unable to work since she was diagnosed and will return to work part time when radiation starts.In other news some may know that I was going to buy a 09 6 spd. Challenger SRT when they were released. That Idea has been placed on hold for at least a year as I had 11000 saved for a down payment that we are using to make ends meat while adjusting to basically a single income household as she was moved to long term disability in October which only pay out at 30% with no benefits, ins. or taxes taken out. That’s the reasoning for not posting much on the forum, even though I didn’t really post much anyway. I would have much rather been at the epic meet. Maybe I should have posted that I wasn’t going to make it, but it wasn’t a concern to me at the time as I had other things on my mind. I know a couple people think I bailed because I didn’t want to drive the distance but with making the MN 7.5 Hr drive, and a Chicago meet. A MN meet, St Louis meet (6 hr drive) and monthly Chicago meets for the Mp3 car forums that I frequent, I assure that distance was not an issue.Aron
r the next couple weeks me have to periodically drive back to Middleton for checkups on Sept. 15th, 18th, 22nd, and the 24th and one the 26th we made our last visit for egg retrieval and to have embryos made.On the 26th Katie had surgery to have her port placed for chemo and her chemo started on the 8th of Oct. Katie now goes to chemo every 3 weeks and gets 3 drugs administered in one sitting and she has to give herself a shot of neulesta the day after her chemo. The neulesta shot is to help her while blood cells regain after chemo as she is much more likely to get sick. Katie generally feels sick from the day after chemo up to about 3-4 days before her next treatment. She now only has 2 treatments left that will end at the end of January; then she will move onto 5 weeks of radiation. After that she will move onto a daily pill that is essentially a low dose of chemo for 5 years then we will be back to have our embryos placed and hopefully get pregnant. Katie has also been unable to work since she was diagnosed and will return to work part time when radiation starts.In other news some may know that I was going to buy a 09 6 spd. Challenger SRT when they were released. That Idea has been placed on hold for at least a year as I had 11000 saved for a down payment that we are using to make ends meat while adjusting to basically a single income household as she was moved to long term disability in October which only pay out at 30% with no benefits, ins. or taxes taken out. That’s the reasoning for not posting much on the forum, even though I didn’t really post much anyway. I would have much rather been at the epic meet. Maybe I should have posted that I wasn’t going to make it, but it wasn’t a concern to me at the time as I had other things on my mind. I know a couple people think I bailed because I didn’t want to drive the distance but with making the MN 7.5 Hr drive, and a Chicago meet. A MN meet, St Louis meet (6 hr drive) and monthly Chicago meets for the Mp3 car forums that I frequent, I assure that distance was not an issue.Aron